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GOOD MORNING, EVERYONE.

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WELCOME TO THE JULY MEETING OF

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THE INTERAGENCY AUTISM

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COORDINATING COMMITTEE.

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IT'S A PLEASURE TO SEE YOU.

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I APOLOGIZE THAT I HAD TO BE

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VIRTUAL TODAY, BUT IT'S GREAT TO

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JOIN YOU.

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I DID INTRODUCE MYSELF AT THE

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LAST IACC MEETING.

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I'M SHELLI AVENEVOLI, CURRENTLY

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ACTING DIRECTOR OF NIMH.

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AS MANY OF YOU KNOW, DR. JOSHUA

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GORDON HAS STEPPED DOWN FROM HIS

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POSITION AT NIMH, AND SO NOW I'M

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SERVING AS THE CHAIR OF THE IACC

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AS WELL AS THE ACTING DIRECTOR

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OF NIMH.

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AS I SAID, IT REALLY A PLEASURE

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TO JOIN YOU TODAY.

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I DID INTRODUCE MYSELF JUST A

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LITTLE BIT AT THE LAST MEETING,

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WIBUT I THOUGHT FOR THOSE OF YOU

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WHO MAY NOT HAVE BEEN THERE,

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JUST BRIEFLY, I AM A

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DEVELOPMENTAL PSYCHOLOGIST BY

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TRAINING, WITH A PARTICULAR

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PASSION FOR YOUTH MENTAL HEALTH,

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UNDERSTANDING THE CAUSES AND

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IMPROVING THE LIFE OF YOUNG

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PEOPLE.

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DURING MY TENURE AT NIMH, I'VE

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REALLY HAD THE OPPORTUNITY TO

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WORK IN A VARIETY OF PLACES.

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I'VE BEEN HERE FOR 23 YEARS NOW,

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AND BOTH IN THE INTRAMURAL

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RESEARCH PROGRAM AS WELL AS

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RUNNING SOME PROGRAMS IN THE

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EXTRAMURAL RESEARCH PROGRAM.

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WITH A FOCUS PARTICULARLY AS I

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MENTIONED ON YOUTH MENTAL

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HEALTH, SUICIDE PREVENTION, AND

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MATERNAL HEALTH AS WELL.

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SO WHILE I AM NEW TO THE CHAIR

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POSITION, I'M VERY FAMILIAR WITH

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THE ACTIVITIES AND THE REPORTS

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OF THE IACC AND I'VE BEEN

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ATTENDING THESE COMMITTEE

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MEETINGS FOR A LONG TIME.

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SO I'M LOOKING VERY MUCH FORWARD

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TO WORKING WITH ALL OF YOU TODAY

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TO CARRY ON THE IMPORTANT WORK

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OF THIS COMMITTEE, AND I ALSO

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WOULD LIKE TO TAKE THIS

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OPPORTUNITY TO THANK DR. GORDON

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FOR HIS SERVICE AS CHAIR OF THE

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IACC FOR OVER THE LAST EIGHT

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YEARS.

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AND OF COURSE A BIG THANK YOU TO

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DR. SUSAN DANIELS, FOR HER

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CONTINUED SERVICE AS EXECUTIVE

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SECRETARY OF THE COMMITTEE.

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AND THANKS TO THE WHOLE TEAM AS

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WELL, ONI AND TEAM AS WELL.

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SO WE'RE VERY EXCITED FOR

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TODAY'S AGENDA ITEMS.

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WE WILL START THE MORNING WITH

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UPDATE FROM THE NATIONAL AUTISM

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COORDINATOR, AS WELL AS THE

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ROUND ROBIN.

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FOLLOWED BY PRESENTATIONS FROM

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MEMBERS OF THE FEDERAL

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INTERAGENCY WORK GROUP ON AUTISM

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OR AS WE LIKE TO CALL IT, FIWA.

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WE WILL ALSO DISCUSS COMMITTEE

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BUSINESS THIS MORNING, AND THEN

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IN THE AFTERNOON, WE WILL HEAR

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PUBLIC COMMENTS AND HAVE A

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SERIES OF PRESENTATIONS AND

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PANEL DISCUSSIONS ON THE TOPIC

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OF FAMILY CAREGIVING.

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SO WITH THAT I'D LIKE TO TURN IT

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OVER TO SUSAN FOR MORE REMARKS

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AND THE ROLL CALL.

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>> THANK YOU SO MUCH,
SHELLI.

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I'D ALSO LIKE TO WELCOME

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EVERYONE TO THIS MEETING OF THE

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INTERAGENCY AUTISM COORDINATING

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COMMITTEE, WHICH WILL BE OUR

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LAST ONE FOR THIS ITERATION.

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THE LAST FULL COMMITTEE MEETING,

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THAT IS.

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AS MANY OF YOU KNOW, THE AUTISM

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CARES ACT IS IN THE PROCESS OF

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RE-AUTHORIZATION AND WE HOPE

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THAT IT WILL BE RE-AUTHORIZED

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BEFORE THE SUNSET DATE OF

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SEPTEMBER 30TH, 2024, AND IN THE

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MEANTIME, WE'LL BE WORKING ON

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CLOSEOUT ACTIVITIES TO FINISH

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ALL THE PROJECTS THAT ARE

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REMAINING FOR THIS COMMITTEE.

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AND WE'RE JUST SO GRATEFUL TO

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THE COMMITTEE FOR THE WORK THAT

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YOU'VE DONE OVER THE PAST THREE

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YEARS.

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SO NOW I WILL TRANSITION OVER TO

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GIVING YOU SOME COMMITTEE MEMBER

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UPDATES.

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I'D LIKE TO WELCOME OUR NEWEST

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COMMITTEE MEMBER, MS. DEIRDRA

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ASSEY FROM THE DEPARTMENT OF

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JUSTICE.

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DEIRDRA, WOULD YOU LIKE TO SAY A

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FEW WORDS AND INTRODUCE

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YOURSELF?

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IF YOU'RE HERE?

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>> HI, EVERYONE.

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MY NAME IS DEIRDRA ASSEY, AND I

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AM A POLICY ADVISOR WITH THE

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BUREAU OF JUSTICE ASSISTANCE.

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ONE OF THE FUNDING ARMS OF THE

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DEPARTMENT OF JUSTICE.

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THIS IS MY FIRST MEETING AND I'M

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VERY EXCITED TO BE HERE.

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>> THANK YOU SO MUCH.

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WE'D ALSO LIKE TO WELCOME

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DR. BRIAN BLOOMER FROM THE

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ENVIRONMENTAL PROTECTION AGENCY,

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WHO IS SERVING AS AN ALTERNATE

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FOR THE EPA TODAY.

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BRIAN?

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>> YES, THANK YOU VERY
MUCH.

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MY NAME IS BRYAN BLOOMER.

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I'M A LONG-TERM EMPLOYEE, I'VE

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WORKED IN EXTRAMURAL RESEARCH

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FUNDING AS WELL AS THE

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INTRAMURAL PROGRAMS FOR AIR

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POLLUTION, CLIMATE CHANGE,

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CHEMICAL SAFETY, AND SAFE AND

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SUSTAINABLE WATERS.

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I'M REALLY GRATEFUL FOR THE

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OPPORTUNITY TO SUPPORT DR. THANK

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YOU VAL AND REBECCA AND BEING A

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PART OF THIS COMMITTEE TODAY AND

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OFFERING MY EXPERIENCE IN

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ADDITION TO MY PROFESSIONAL

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EXPERIENCE, MY PERSONAL

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EXPERIENCE AS A FATHER OF TWO

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PEOPLE WHO ARE DIAGNOSED ON THE

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AUTISM SPECTRUM.

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SO THANK YOU VERY MUCH FOR THE

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OPPORTUNITY.

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>> THANK YOU, BRYAN.

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FINALLY, I'D LIKE TO NOTE THAT

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SOME OF OUR COMMITTEE MEMBERS

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HAVE PROFESSIONAL UPDATES.

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SO DR. JENNY PHAN IS NOW

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RESEARCH ASSISTANT PROFESSOR AND

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ASSISTANT DIRECTOR OF COMMUNITY

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ENGAGEMENT IN THE CENTER FOR

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ADAPTIVE SYSTEMS OF BRAIN/BODY

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INTERACTIONS AT GEORGE MASON

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UNIVERSITY.

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CONGRATULATIONS, JENNY.

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AND IN ADDITION, MS. SAM CRANE

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IS NOW AN INDEPENDENT CONSULTANT

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AND SERVING ON THE BOARD OF THE

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AUTISTIC SELF ADVOCACY NETWORK.

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CONGRATULATIONS, SAM.

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NOW I'D LIKE TO TURN IT OVER TO

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THE ONAC DEPUTY DIRECTOR FOR

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SOME HOUSEKEEPING ANNOUNCEMENTS.

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>> GOOD MORNING,
EVERYBODY.

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HOUSEKEEPING NOTES FOR MEMBERS

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ATTENDING IN PERSON.

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PLEASE RAISE YOUR HAND TO BE

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RECOGNIZED TO SPEAK AND DURING

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THE VOTES THAT WE'LL HAVE DURING

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COMMITTEE BUSINESS.

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YOU CAN JUST RAISE YOUR HAND IN

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THE ROOM.

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AND WHEN YOU'D LIKE TO SPEAK,

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PLEASE TURN ON YOUR TABLETOP

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MICROPHONE AND TURN IT OFF WHEN

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YOU'RE FINISHED.

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FOR OUR MEMBERS ATTENDING

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VIRTUALLY, YOU CAN USE THE RAISE

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HAND FEATURE IN ZOOM TO BE

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RECOGNIZED.

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FOR VOTING, PLEASE USE THE ZOOM

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POLLS THAT YOU'LL SEE IN ZOOM.

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STAY MUTED AND KEEP YOUR CAMERA

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OFF DURING PRESENTATIONS AND

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BREAKS.

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AND YOU CAN TURN YOUR CAMERA ON

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DURING DISCUSSIONS AND UNMUTE

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YOURSELF TO SPEAK.

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FOR MEMBERS WHO WISH TO COMMENT

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IN WRITING, PLEASE SEND YOUR

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COMMENTS IN ZOOM TO THE PERSON

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LABELED "SEND COMMENTS HERE,"

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STEVEN ISAACSON AND HE'LL READ

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THEM OUT LOUD TO THE COMMITTEE.

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PLEASE KEEP YOUR COMMENTS BRIEF

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SO WE CAN HEAR FROM AS MANY

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PEOPLE AS POSSIBLE DURING THE

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DISCUSSIONS.

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FOR THOSE WHO WOULD LIKE CLOSED

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CAPTIONING, THAT'S AVAILABLE IN

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ZOOM FOR COMMITTEE MEMBERS, AS

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WELL AS ON VIDEOCAST FOR MEMBERS

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OF THE VIEWING PUBLIC.

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IN THE ROOM THERE'S A SENSORY

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ROOM AVAILABLE DOWN THE HALL FOR

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THOSE WHO MIGHT NEED A SENSORY

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BREAK.

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PLEASE DO NOT USE THAT ROOM FOR

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ANY KIND OF NOISY ACTIVITIES OR

220
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DURING THE LUNCH BREAK.

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WE ALSO HAVE A ZOOM ROOM DOWN

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THE HALL FOR THOSE WHO MIGHT

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NEED TO STEP OUT TO TAKE A CALL

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OR MEETING AND WE'LL HAVE SPACE

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AVAILABLE FOR LUNCH AS WELL.

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THERE'S RESTROOMS IN THE MAIN

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LOBBY, AND PLEASE SILENCE YOUR

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CELL PHONES TO NOT DISRUPT THE

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MEETING.

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AND I'LL TURN IT BACK OVER TO

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SUSAN.

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>> THANK YOU.

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ALL RIGHT.

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SO NOW WE WILL GO THROUGH THE

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ROLL CALL FOR THE COMMITTEE.

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AND WE DO HAVE MANY MEMBERS WHO

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ARE ONLINE TODAY, SO FEEL FREE

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TO UNMUTE YOURSELF AND TURN ON

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YOUR CAMERA WHEN I CALL YOUR

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NAME.

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SO FIRST, SHELLI AVENEVOLI.

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>> PRESENT.

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>> ALLYSON DEAN FROM ACF.

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>> GOOD MORNING.

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I'M HERE.

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>> ANYONE ELSE FROM ACF?

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JENNIFER JOHNSON FROM ACL.

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>> HERE.

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>> KAMILA MYSTERY TOLD ME
SHE

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MIGHT BE JOINING A LITTLE LATE.

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ARE YOU HERE YESTERDAY, KAMILA?

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FROM HRQ?

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I THINK SHE'LL BE JOINING US

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SOON.

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OH, ROBYN --

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>> YES, ROBYN FROM ARC IS
HERE.

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KAMILA WILL BE JOINING IN A

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LITTLE BIT.

259
00:08:26,206 --> 00:08:27,674
>> STUART SHAPIRA, I'M
HERE AS

260
00:08:27,674 --> 00:08:32,245
THE ALTERNATE AND KARO KARYL WIL

261
00:08:32,245 --> 00:08:33,079
JOIN AT 11:00.

262
00:08:33,079 --> 00:08:34,881
>> THANK YOU SO MUCH,
STUART.

263
00:08:34,881 --> 00:08:45,458
FROM CMS, JODI SI FOR MELISSA

264
00:08:48,061 --> 00:08:48,762
HARRIS?

265
00:08:48,762 --> 00:08:51,331
NOT GOING TO BE HERE TODAY.

266
00:08:51,331 --> 00:08:52,799
TIFFANY FARCHIONE IS NOT GOING

267
00:08:52,799 --> 00:08:55,435
TO BE ABLE TO JOIN US BUT DO WE

268
00:08:55,435 --> 00:08:56,703
HAVE MARTINE SOLAGES?

269
00:08:56,703 --> 00:09:02,308
>> GOOD MORNING, MARTINE
SEW

270
00:09:02,308 --> 00:09:04,611
SOLAGES, FDA.

271
00:09:04,611 --> 00:09:05,812
LAUREN FROM HRSA?

272
00:09:05,812 --> 00:09:06,312
>> PRESENT.

273
00:09:06,312 --> 00:09:07,881
>> THANK YOU.

274
00:09:07,881 --> 00:09:08,681
INDIAN HEALTH SERVICE, BARBARA

275
00:09:08,681 --> 00:09:11,551
ROLAND?

276
00:09:11,551 --> 00:09:12,619
>> GOOD MORNING, I'M HERE.

277
00:09:12,619 --> 00:09:15,221
>> THANK YOU, BARBARA.

278
00:09:15,221 --> 00:09:19,526
FROM THE NIH, DR. MONICA

279
00:09:19,526 --> 00:09:22,328
BERTAGNOLLI BUT PROBABLY THE

280
00:09:22,328 --> 00:09:24,531
ALTERNATE JANE SIMONE IS IN THE

281
00:09:24,531 --> 00:09:25,298
SEAT NEXT TO ME.

282
00:09:25,298 --> 00:09:26,733
I THINK SHE WILL BE HERE A

283
00:09:26,733 --> 00:09:29,469
LITTLE BIT LATER TODAY.

284
00:09:29,469 --> 00:09:31,070
THE NATIONAL INSTITUTE OF CHILD

285
00:09:31,070 --> 00:09:36,576
HEALTH AND HUMAN DEVELOPMENT?

286
00:09:36,576 --> 00:09:37,744
>> I'M HERE.

287
00:09:37,744 --> 00:09:38,845
>> ALICE KAU?

288
00:09:38,845 --> 00:09:39,612
>> YES.

289
00:09:39,612 --> 00:09:41,481
I'M ATTENDING AS AN ALTERNATE

290
00:09:41,481 --> 00:09:42,382
FOR DR. BIANCHI.

291
00:09:42,382 --> 00:09:44,984
>> THANK YOU SO MUCH,
ALICE.

292
00:09:44,984 --> 00:09:45,518
THE NATIONAL INSTITUTE OF

293
00:09:45,518 --> 00:09:46,719
DEAFNESS AND OTHER COMMUNICATION

294
00:09:46,719 --> 00:09:48,188
DISORDERS?

295
00:09:48,188 --> 00:09:50,023
>> YES, GOOD MORNING.

296
00:09:50,023 --> 00:09:50,657
JUDITH COOPER.

297
00:09:50,657 --> 00:09:53,526
I'M HERE REPRESENTING OUR

298
00:09:53,526 --> 00:09:54,427
DIRECTOR, DEB TUCCI.

299
00:09:54,427 --> 00:09:55,595
THANK YOU.

300
00:09:55,595 --> 00:09:57,363
>> THANK YOU.

301
00:09:57,363 --> 00:09:58,231
THE NATIONAL INSTITUTE OF

302
00:09:58,231 --> 00:10:00,200
ENVIRONMENTAL HEALTH SCIENCES?

303
00:10:00,200 --> 00:10:01,401
>> HELLO.

304
00:10:01,401 --> 00:10:03,570
THIS IS CINDY LAWLER.

305
00:10:03,570 --> 00:10:05,972
I'M REPRESENTING AS ALTERNATE

306
00:10:05,972 --> 00:10:08,608
FOR RICK WOYCHIK, NATIONAL

307
00:10:08,608 --> 00:10:09,809
INSTITUTE OF ENVIRONMENTAL

308
00:10:09,809 --> 00:10:10,477
HEALTH SCIENCES.

309
00:10:10,477 --> 00:10:10,977
GOOD MORNING, EVERYONE.

310
00:10:10,977 --> 00:10:11,711
>> GOOD MORNING.

311
00:10:11,711 --> 00:10:12,645
THANK YOU.

312
00:10:12,645 --> 00:10:13,646
THE NATIONAL INSTITUTE OF

313
00:10:13,646 --> 00:10:14,414
NEUROLOGICAL DISORDERS AS

314
00:10:14,414 --> 00:10:14,981
STROKE?

315
00:10:14,981 --> 00:10:19,118
>> HI, I'M CHRISTY HARDY,
I'M

316
00:10:19,118 --> 00:10:21,287
ATTENDING AS AN ALTERNATE FOR

317
00:10:21,287 --> 00:10:23,256
DR. WALTER KOROSHETZ, I'M ALSO

318
00:10:23,256 --> 00:10:25,892
IN SCOTLAND SO I HOPE THAT MY

319
00:10:25,892 --> 00:10:27,894
WIFI HOLDS.

320
00:10:27,894 --> 00:10:29,429
I'LL PROBABLY BE MUTED AND WITH

321
00:10:29,429 --> 00:10:34,367
MY CAMERA OFF.

322
00:10:34,367 --> 00:10:36,669
>> THANK YOU, KRISTI.

323
00:10:36,669 --> 00:10:37,437
SAMHSA, SUNNY PATEL?

324
00:10:37,437 --> 00:10:38,771
>> PRESENT.

325
00:10:38,771 --> 00:10:39,839
>> THANK YOU.

326
00:10:39,839 --> 00:10:43,009
DEPARTMENT OF DEFENSE?

327
00:10:43,009 --> 00:10:43,610
NICOLE WILLIAMS?

328
00:10:43,610 --> 00:10:44,310
>> HI, EVERYBODY.

329
00:10:44,310 --> 00:10:45,211
PRESENT.

330
00:10:45,211 --> 00:10:49,349
>> GOOD MORNING.

331
00:10:49,349 --> 00:10:50,984
THE DEPARTMENT OF EDUCATION,

332
00:10:50,984 --> 00:10:55,455
KRISTI KAVULIC?

333
00:10:55,455 --> 00:11:01,060
OR EMILY WEAVER?

334
00:11:01,060 --> 00:11:08,868
AND EPA, BRYAN BLOOMER.

335
00:11:08,868 --> 00:11:10,136
>> YES, I'M PRESENT.

336
00:11:10,136 --> 00:11:10,470
THANK YOU.

337
00:11:10,470 --> 00:11:12,472
>> THANK YOU.

338
00:11:12,472 --> 00:11:14,574
FOR THE DEPARTMENT OF HOUSING

339
00:11:14,574 --> 00:11:16,509
AND URBAN DEVELOPMENT, LEAH

340
00:11:16,509 --> 00:11:16,743
LOZIER?

341
00:11:16,743 --> 00:11:18,378
>> GOOD MORNING.

342
00:11:18,378 --> 00:11:20,580
>> GOOD MORNING, LEAH.

343
00:11:20,580 --> 00:11:22,515
DEPARTMENT OF JUSTICE, DEIRDRA

344
00:11:22,515 --> 00:11:24,851
ASSEY?

345
00:11:24,851 --> 00:11:26,719
>> GOOD MORNING, PRESENT.

346
00:11:26,719 --> 00:11:29,188
>> THANK YOU.

347
00:11:29,188 --> 00:11:30,757
THE DEPARTMENT OF LABOR, SCOTT

348
00:11:30,757 --> 00:11:32,325
MICHAEL ROBERTSON?

349
00:11:32,325 --> 00:11:33,793
I THINK MAYBE JOINING US A

350
00:11:33,793 --> 00:11:35,562
LITTLE LATER BECAUSE HE'S

351
00:11:35,562 --> 00:11:36,529
SEATED -- OH, THERE YOU ARE.

352
00:11:36,529 --> 00:11:37,864
>> GOOD MORNING.

353
00:11:37,864 --> 00:11:40,266
I'M PLANNING TO TRY TO BE IN

354
00:11:40,266 --> 00:11:42,535
PERSON THIS AFTERNOON, BUT JUST

355
00:11:42,535 --> 00:11:43,336
VIRTUAL THIS MORNING.

356
00:11:43,336 --> 00:11:43,570
THANKS.

357
00:11:43,570 --> 00:11:44,103
>> OH, GREAT.

358
00:11:44,103 --> 00:11:44,804
THANK YOU.

359
00:11:44,804 --> 00:11:47,040
ALL RIGHT.

360
00:11:47,040 --> 00:11:47,941
SSA.

361
00:11:47,941 --> 00:11:48,474
ALISON MARVIN?

362
00:11:48,474 --> 00:11:49,676
>> GOOD MORNING.

363
00:11:49,676 --> 00:11:51,477
THIS IS ALISON MARVIN.

364
00:11:51,477 --> 00:11:54,247
>> GOOD MORNING.

365
00:11:54,247 --> 00:11:56,015
AND THE VETERANS'

366
00:11:56,015 --> 00:11:57,216
ADMINISTRATION.

367
00:11:57,216 --> 00:12:00,153
>> THIS IS SCOTT PATTERSON
HERE

368
00:12:00,153 --> 00:12:00,620
FORMAT MILLER.

369
00:12:00,620 --> 00:12:01,788
>> THANKS, SCOTT.

370
00:12:01,788 --> 00:12:02,889
AND NOW I'LL GO THROUGH THE

371
00:12:02,889 --> 00:12:05,725
PUBLIC MEMBERS.

372
00:12:05,725 --> 00:12:06,759
MARIA MERCEDES AVILA?

373
00:12:06,759 --> 00:12:08,394
>> GOOD MORNING, I'M HERE.

374
00:12:08,394 --> 00:12:10,330
>> GOOD MORNING.

375
00:12:10,330 --> 00:12:13,199
ALICE CARTER?

376
00:12:13,199 --> 00:12:14,400
>> HI, GOOD MORNING.

377
00:12:14,400 --> 00:12:15,034
I'M HERE ALSO.

378
00:12:15,034 --> 00:12:17,870
>> GOOD MORNING.

379
00:12:17,870 --> 00:12:21,474
SAM CRANE?

380
00:12:21,474 --> 00:12:22,809
I THINK WILL BE JOINING US IN A

381
00:12:22,809 --> 00:12:24,444
LITTLE BIT.

382
00:12:24,444 --> 00:12:26,746
>> SHE'S TAKING SOMEONE TO

383
00:12:26,746 --> 00:12:28,715
SCHOOL SO SHE'LL BE HERE

384
00:12:28,715 --> 00:12:28,948
BRIEFLY.

385
00:12:28,948 --> 00:12:29,349
>> GREAT.

386
00:12:29,349 --> 00:12:32,652
THANK YOU.

387
00:12:32,652 --> 00:12:38,758
AISHA DICKERSON?

388
00:12:38,758 --> 00:12:39,492
TOM FRASIER?

389
00:12:39,492 --> 00:12:39,993
>> PRESENT.

390
00:12:39,993 --> 00:12:45,431
>> THANK YOU.

391
00:12:45,431 --> 00:12:48,301
AND DINAH GAZNER?

392
00:12:48,301 --> 00:12:50,069
TOLD ME THAT SHE MAY OR MAY NOT

393
00:12:50,069 --> 00:12:50,536
BE -- OH.

394
00:12:50,536 --> 00:12:51,237
>> THANK YOU.

395
00:12:51,237 --> 00:12:52,005
>> THANKS, EVERYBODY.

396
00:12:52,005 --> 00:12:53,106
I'LL BE POPPING IN AND OUT

397
00:12:53,106 --> 00:12:53,873
TODAY.

398
00:12:53,873 --> 00:12:57,210
IT'S DISSERTATION TIME.

399
00:12:57,210 --> 00:13:00,747
>> GOOD MORNING AND GOOD
LUCK

400
00:13:00,747 --> 00:13:11,157
WITH YOUR DISSERTATION.

401
00:13:13,559 --> 00:13:16,229
ALISHA HALL DAY?

402
00:13:16,229 --> 00:13:16,562
GREG JOHNSON?

403
00:13:16,562 --> 00:13:17,764
>> GOOD MORNING.

404
00:13:17,764 --> 00:13:21,034
>> GOOD MORNING.

405
00:13:21,034 --> 00:13:21,801
YETTA MYRICK?

406
00:13:21,801 --> 00:13:23,670
>> GOOD MORNING, HAPPY
SUMMER.

407
00:13:23,670 --> 00:13:24,203
I'M HERE.

408
00:13:24,203 --> 00:13:30,543
>> HAPPY SUMMER.

409
00:13:30,543 --> 00:13:34,280
LINDSEY NEBEKER?

410
00:13:34,280 --> 00:13:37,116
THANK YOU.

411
00:13:37,116 --> 00:13:37,650
JENNY MAY PHAN?

412
00:13:37,650 --> 00:13:39,085
>> HI, EVERYONE, I'M HERE.

413
00:13:39,085 --> 00:13:45,858
>> THANK YOU.

414
00:13:45,858 --> 00:13:47,393
CAMILLE PROCTOR?

415
00:13:47,393 --> 00:13:48,428
SUSAN RIVERA?

416
00:13:48,428 --> 00:13:49,395
>> GOOD MORNING, PRESENT.

417
00:13:49,395 --> 00:13:51,130
>> MATTHEW SIEGEL.

418
00:13:51,130 --> 00:13:52,231
>> HERE, THANK YOU.

419
00:13:52,231 --> 00:13:54,634
>> THANK YOU.

420
00:13:54,634 --> 00:13:58,137
LAURA IVANOVA SMITH?

421
00:13:58,137 --> 00:13:59,105
>> HERE.

422
00:13:59,105 --> 00:14:01,240
AND I LIKE TO GO BY IVANOVA.

423
00:14:01,240 --> 00:14:01,541
THANK YOU.

424
00:14:01,541 --> 00:14:02,508
>> THANKS.

425
00:14:02,508 --> 00:14:04,344
SORRY, YOU'RE LISTED ON THE

426
00:14:04,344 --> 00:14:05,344
ROSTER LIST HERE AS LAURA.

427
00:14:05,344 --> 00:14:08,548
THAT'S WHY I JUST --

428
00:14:08,548 --> 00:14:17,023
> HARI SLEEN

429
00:14:17,023 --> 00:14:21,327
VA SIN?

430
00:14:21,327 --> 00:14:21,894
HELEN TAGER-FLUSBERG IS NOT

431
00:14:21,894 --> 00:14:23,696
GOING TO BE PRESENT, IS AWAY.

432
00:14:23,696 --> 00:14:24,230
JULIE TAYLOR?

433
00:14:24,230 --> 00:14:24,630
>> PRESENT.

434
00:14:24,630 --> 00:14:25,231
>> THANK YOU.

435
00:14:25,231 --> 00:14:25,765
AND PAUL WANG.

436
00:14:25,765 --> 00:14:27,100
>> GOOD MORNING, EVERYONE.

437
00:14:27,100 --> 00:14:27,333
PRESENT.

438
00:14:27,333 --> 00:14:28,735
>> GOOD MORNING.

439
00:14:28,735 --> 00:14:30,069
WONDERFUL TO SEE MANY OF YOU

440
00:14:30,069 --> 00:14:31,370
VIRTUALLY AND DID I MISS

441
00:14:31,370 --> 00:14:31,604
ANYBODY?

442
00:14:31,604 --> 00:14:32,905
IS THERE ANYONE HERE

443
00:14:32,905 --> 00:14:33,973
REPRESENTING AN AGENCY THAT I

444
00:14:33,973 --> 00:14:38,277
DIDN'T CALL ON OR ANYONE ELSE?

445
00:14:38,277 --> 00:14:40,012
OH, JALYNN PRINCE, I DON'T KNOW

446
00:14:40,012 --> 00:14:40,880
HOW I MISSED YOU.

447
00:14:40,880 --> 00:14:43,282
I JUST SKIPPED OVER YOU ON LIST.

448
00:14:43,282 --> 00:14:44,250
SORRY.

449
00:14:44,250 --> 00:14:44,717
WELL, YOU WERE HERE.

450
00:14:44,717 --> 00:14:45,585
THANK YOU SO MUCH.

451
00:14:45,585 --> 00:14:48,421
AND THANKS FOR POINTING THAT

452
00:14:48,421 --> 00:14:48,588
OUT.

453
00:14:48,588 --> 00:14:48,988
>> HI.

454
00:14:48,988 --> 00:14:52,158
I THINK I MISSED MY

455
00:14:52,158 --> 00:14:52,992
INTRODUCTION.

456
00:14:52,992 --> 00:14:54,260
KRISTI KAVULIC FROM DEPARTMENT

457
00:14:54,260 --> 00:14:54,861
OF EDUCATION.

458
00:14:54,861 --> 00:14:57,396
>> GREAT TO SEE YOU,
CHRISTY.

459
00:14:57,396 --> 00:15:00,032
ANYBODY ELSE?

460
00:15:00,032 --> 00:15:00,466
ALL RIGHT.

461
00:15:00,466 --> 00:15:01,768
AND WE'LL ALSO KEEP TRACK IF

462
00:15:01,768 --> 00:15:04,170
PEOPLE START POPPING IN ONLINE.

463
00:15:04,170 --> 00:15:09,642
OH, AND ROB OXENDORF, NOT A

464
00:15:09,642 --> 00:15:10,643
MEMBER OF THE COMMITTEE BUT

465
00:15:10,643 --> 00:15:11,677
WATCHING TODAY CAN SAY HI.

466
00:15:11,677 --> 00:15:13,913
>> GOOD MORNING,
EVERYBODY.

467
00:15:13,913 --> 00:15:16,983
ROB OCHSENDORF WITH THE NATIONAL

468
00:15:16,983 --> 00:15:17,416
SCIENCE FOUNDATION.

469
00:15:17,416 --> 00:15:17,817
HAPPY TO BE HERE.

470
00:15:17,817 --> 00:15:18,718
>> THANK YOU.

471
00:15:18,718 --> 00:15:24,490
ANYONE ELSE?

472
00:15:24,490 --> 00:15:25,258
ALL RIGHT.

473
00:15:25,258 --> 00:15:26,559
THEN I THINK THAT COMPLETES OUR

474
00:15:26,559 --> 00:15:27,760
ROLL CALL.

475
00:15:27,760 --> 00:15:31,831
NEXT IS THE MINUTES, UNLESS DO

476
00:15:31,831 --> 00:15:32,932
YOU HAVE ANYTHING TO SAY,

477
00:15:32,932 --> 00:15:33,599
SHELLI?

478
00:15:33,599 --> 00:15:34,333
>> I DO NOT.

479
00:15:34,333 --> 00:15:34,667
THANK YOU.

480
00:15:34,667 --> 00:15:35,434
>> ALL RIGHT.

481
00:15:35,434 --> 00:15:36,435
YOU'RE JUST -- YOU'RE ON THE

482
00:15:36,435 --> 00:15:38,504
SCREEN SO I JUST WANTED TO MAKE

483
00:15:38,504 --> 00:15:39,705
SURE THAT YOU DIDN'T HAVE

484
00:15:39,705 --> 00:15:40,039
ANYTHING.

485
00:15:40,039 --> 00:15:41,407
SO THEN WE'LL GO THROUGH THE

486
00:15:41,407 --> 00:15:42,241
APPROVAL OF THE MINUTES.

487
00:15:42,241 --> 00:15:43,509
YOU ALL HAVE THE MINUTES FROM

488
00:15:43,509 --> 00:15:45,077
THE APRIL MEETING IN YOUR

489
00:15:45,077 --> 00:15:46,245
PACKETS AND IT WAS SENT OUT TO

490
00:15:46,245 --> 00:15:49,549
YOU IN ADVANCE.

491
00:15:49,549 --> 00:15:51,384
THIS SUMMARIZES SOME OF THE

492
00:15:51,384 --> 00:15:52,585
PROCEEDINGS OF THAT MEETING.

493
00:15:52,585 --> 00:15:53,653
DOES ANYONE HAVE ANY CONCERNS

494
00:15:53,653 --> 00:15:54,687
ABOUT THE MINUTES OR ANY

495
00:15:54,687 --> 00:15:55,655
CORRECTIONS THAT YOU WOULD LIKE

496
00:15:55,655 --> 00:15:59,592
TO HAVE MADE?

497
00:15:59,592 --> 00:16:02,728
SO I'M NOT SEEING ANYONE.

498
00:16:02,728 --> 00:16:04,430
IN THE ROOM OR IS THERE ANYONE

499
00:16:04,430 --> 00:16:05,464
VIRTUALLY THAT HAS ANY COMMENTS

500
00:16:05,464 --> 00:16:11,370
ABOUT THE MINUTES?

501
00:16:11,370 --> 00:16:12,738
NOT SEEING ANYONE.

502
00:16:12,738 --> 00:16:14,073
CAN I GET A MOTION ON THE FLOOR

503
00:16:14,073 --> 00:16:16,075
TO ACCEPT THE MINUTES?

504
00:16:16,075 --> 00:16:17,810
>> THIS IS YETTA MYRICK.

505
00:16:17,810 --> 00:16:19,278
I CAN PUT A MOTION FORWARD.

506
00:16:19,278 --> 00:16:19,779
>> THANK YOU.

507
00:16:19,779 --> 00:16:20,913
CAN WE GET A SECOND?

508
00:16:20,913 --> 00:16:21,747
>> I SECOND THAT.

509
00:16:21,747 --> 00:16:22,949
>> THANK YOU SO MUCH.

510
00:16:22,949 --> 00:16:25,351
ALL IN FAVOR, PLEASE RAISE YOUR

511
00:16:25,351 --> 00:16:26,485
HAND IN ZOOM OR RAISE YOUR HAND

512
00:16:26,485 --> 00:16:29,956
IN THE ROOM.

513
00:16:29,956 --> 00:16:31,224
EVERYONE IN THE ROOM HAS RAISED

514
00:16:31,224 --> 00:16:32,625
THEIR HAND.

515
00:16:32,625 --> 00:16:38,798
HOW ARE WE ON ZOOM?

516
00:16:38,798 --> 00:16:39,732
OKAY.

517
00:16:39,732 --> 00:16:41,234
SO LOOKS LIKE WE HAVE A MAJORITY

518
00:16:41,234 --> 00:16:47,073
THAT ARE IN FAVOR OF ACCEPTING

519
00:16:47,073 --> 00:16:48,007
THE MINUTES.

520
00:16:48,007 --> 00:16:49,208
ANYBODY OPPOSED TO ACCEPTING THE

521
00:16:49,208 --> 00:16:52,478
MINUTES?

522
00:16:52,478 --> 00:16:54,547
NONE IN THE ROOM.

523
00:16:54,547 --> 00:16:59,051
ANY ON ZOOM?

524
00:16:59,051 --> 00:17:00,353
IT'S A LITTLE HARD TO TELL

525
00:17:00,353 --> 00:17:01,354
BECAUSE OF THE -- MAYBE THE

526
00:17:01,354 --> 00:17:02,521
HANDS ARE STILL RAISED FROM THE

527
00:17:02,521 --> 00:17:02,889
PREVIOUS THING.

528
00:17:02,889 --> 00:17:05,291
IS THERE ANYONE -- AND YOU CAN

529
00:17:05,291 --> 00:17:06,926
ALSO SPEAK UP IF YOU WANT TO

530
00:17:06,926 --> 00:17:11,297
ABSTAIN FROM VOTING.

531
00:17:11,297 --> 00:17:12,398
IT LOOKS LIKE FROM ALL

532
00:17:12,398 --> 00:17:14,233
APPEARANCES HERE THAT WE HAVE A

533
00:17:14,233 --> 00:17:15,101
UNANIMOUS VOTE TO ACCEPT THE

534
00:17:15,101 --> 00:17:16,335
MINUTES SO WE'LL ACCEPT THEM AS

535
00:17:16,335 --> 00:17:16,569
WRITTEN.

536
00:17:16,569 --> 00:17:18,170
IF YOU DO HAVE ANY LAST-MINUTE

537
00:17:18,170 --> 00:17:19,605
CORRECTIONS OR CHANGES, JUST

538
00:17:19,605 --> 00:17:20,907
PLEASE LET THE OFFICE KNOW AND

539
00:17:20,907 --> 00:17:22,008
WE'LL GET THOSE POSTED

540
00:17:22,008 --> 00:17:23,009
IMMEDIATELY AFTER THE MEETING.

541
00:17:23,009 --> 00:17:26,913
SO THANK YOU SO MUCH.

542
00:17:26,913 --> 00:17:28,447
AND I THINK AT THIS POINT, I

543
00:17:28,447 --> 00:17:29,649
WILL CONTINUE THEN WITH THE

544
00:17:29,649 --> 00:17:30,983
NATIONAL AUTISM COORDINATOR

545
00:17:30,983 --> 00:17:32,184
UPDATE, UNLESS ANYONE HAS ANY

546
00:17:32,184 --> 00:17:34,487
QUESTIONS.

547
00:17:34,487 --> 00:17:34,921
ALL RIGHT.

548
00:17:34,921 --> 00:17:36,355
SO THEN WE WILL MOVE FORWARD

549
00:17:36,355 --> 00:17:42,695
WITH THAT.

550
00:17:42,695 --> 00:17:45,298
SO I HAVE A FEW UPDATES FOR YOU

551
00:17:45,298 --> 00:17:46,499
TODAY FROM THE WHITE HOUSE, SOME

552
00:17:46,499 --> 00:17:47,700
LEGISLATIVE UPDATES, FEDERAL

553
00:17:47,700 --> 00:17:49,135
COMMITTEE UPDATES, FEDERAL

554
00:17:49,135 --> 00:17:51,771
DEPARTMENT AND AGENCY

555
00:17:51,771 --> 00:17:52,872
HIGHLIGHTS, WHICH JUST ADD ON TO

556
00:17:52,872 --> 00:17:55,274
WHAT PEOPLE MIGHT WANT TO SHARE

557
00:17:55,274 --> 00:17:56,676
IN ROUND ROBIN, AND SOME

558
00:17:56,676 --> 00:18:07,019
ADDITIONAL UPDATES.

559
00:18:10,623 --> 00:18:11,791
SORRY ABOUT THAT.

560
00:18:11,791 --> 00:18:13,826
THE REMOTE SUDDENLY DECIDED IT

561
00:18:13,826 --> 00:18:18,898
WASN'T GOING TO MOVE.

562
00:18:18,898 --> 00:18:19,999
OKAY, THANK YOU.

563
00:18:19,999 --> 00:18:23,269
READY FOR THE NEXT SLIDE.

564
00:18:23,269 --> 00:18:24,937
SO FIRST AN UPDATE FROM THE

565
00:18:24,937 --> 00:18:25,371
WHITE HOUSE.

566
00:18:25,371 --> 00:18:26,706
IN SUPPORT OF PRESIDENT BIDEN'S

567
00:18:26,706 --> 00:18:27,840
EXECUTIVE ORDER ON INCREASING

568
00:18:27,840 --> 00:18:29,408
ACCESS TO HIGH-QUALITY CARE AND

569
00:18:29,408 --> 00:18:32,211
SUPPORTING CAREGIVERS, HHS

570
00:18:32,211 --> 00:18:33,112
SELECTED 20 STATES TO

571
00:18:33,112 --> 00:18:34,547
PARTICIPATE IN TWO SEPARATE

572
00:18:34,547 --> 00:18:36,282
TECHNICAL ASSISTANCE PROGRAMS

573
00:18:36,282 --> 00:18:38,551
THAT TOGETHER WILL HELP

574
00:18:38,551 --> 00:18:39,552
PARTICIPATING STATES BETTER

575
00:18:39,552 --> 00:18:41,654
RECRUIT, TRAIN, AND RETAIN

576
00:18:41,654 --> 00:18:44,690
DIRECT CARE WORKERS, WHICH WE

577
00:18:44,690 --> 00:18:45,992
KNOW IS A REALLY IMPORTANT ISSUE

578
00:18:45,992 --> 00:18:47,326
IN THIS COMMUNITY, AND PROVIDE

579
00:18:47,326 --> 00:18:48,527
HOME AND COMMUNITY-BASED

580
00:18:48,527 --> 00:18:49,662
SERVICES FOR OLDER ADULTS AND

581
00:18:49,662 --> 00:18:50,963
PEOPLE WITH DISABILITIES.

582
00:18:50,963 --> 00:18:52,598
AND WE PROVIDED THE LINK THERE

583
00:18:52,598 --> 00:19:02,975
FOR THE PRESS RELEASE.

584
00:19:10,716 --> 00:19:12,618
SO NEXT, THE BIDEN-HARRIS

585
00:19:12,618 --> 00:19:13,719
ADMINISTRATION UNVEILED A FINAL

586
00:19:13,719 --> 00:19:15,121
RULE THAT WILL PROTECT AND

587
00:19:15,121 --> 00:19:16,689
IMPROVE HOW MILLIONS OF ELIGIBLE

588
00:19:16,689 --> 00:19:18,824
PEOPLE APPLY FOR, RENEW AND

589
00:19:18,824 --> 00:19:19,592
MAINTAIN HEALTHCARE COVERAGE

590
00:19:19,592 --> 00:19:21,694
THROUGH MEDICAID, THE CHILDREN'S

591
00:19:21,694 --> 00:19:22,662
HEALTH INSURANCE PROGRAM, AND

592
00:19:22,662 --> 00:19:24,764
THE BASIC HEALTH PROGRAM.

593
00:19:24,764 --> 00:19:27,600
WE PROVIDED THE PRESS RELEASE.

594
00:19:27,600 --> 00:19:29,568
HERE.

595
00:19:29,568 --> 00:19:33,072
ALSO WITH THIS UPDATE, THE WHITE

596
00:19:33,072 --> 00:19:33,873
HOUSE OFFICE OF SCIENCE AND

597
00:19:33,873 --> 00:19:35,408
TECHNOLOGY POLICY HAS A WORKING

598
00:19:35,408 --> 00:19:36,876
GROUP FOR THE NATIONAL SCIENCE

599
00:19:36,876 --> 00:19:39,078
AND TECHNOLOGY COUNCIL, AND THIS

600
00:19:39,078 --> 00:19:40,446
WORKING GROUP IS CALLED THE

601
00:19:40,446 --> 00:19:41,714
DISABILITY DATA INTERAGENCY

602
00:19:41,714 --> 00:19:42,348
WORKING GROUP.

603
00:19:42,348 --> 00:19:43,883
I'M A MEMBER OF THIS WORKING

604
00:19:43,883 --> 00:19:45,317
GROUP, AND SEVERAL OF MY FEDERAL

605
00:19:45,317 --> 00:19:46,752
COLLEAGUES ARE MEMBERS OF THIS

606
00:19:46,752 --> 00:19:49,922
WORKING GROUP THAT IS WORKING TO

607
00:19:49,922 --> 00:19:50,790
COORDINATE ACTIVITIES TO

608
00:19:50,790 --> 00:19:51,991
STRENGTHEN THE FEDERAL

609
00:19:51,991 --> 00:19:53,392
GOVERNMENT'S USE OF DISABILITY

610
00:19:53,392 --> 00:19:55,795
DATA TO ADVANCE EQUITY FOR

611
00:19:55,795 --> 00:19:56,729
PEOPLE WITH DISABILITIES.

612
00:19:56,729 --> 00:19:58,998
AND THE MEMBERSHIP CROSSES

613
00:19:58,998 --> 00:20:00,833
MULTIPLE DEPARTMENTS AND

614
00:20:00,833 --> 00:20:02,501
AGENCIES, AND THIS WORKING GROUP

615
00:20:02,501 --> 00:20:03,903
IS GOING TO BE WORKING TOWARD

616
00:20:03,903 --> 00:20:06,105
CREATING A FEDERAL EVIDENCE

617
00:20:06,105 --> 00:20:07,473
AGENDA ON DISABILITY EQUITY BY

618
00:20:07,473 --> 00:20:10,242
THE FALL OF 2024, SO IN JUST A

619
00:20:10,242 --> 00:20:11,477
FEW SHORT MONTHS.

620
00:20:11,477 --> 00:20:12,878
AND THEY RECENTLY HELD A SERIES

621
00:20:12,878 --> 00:20:14,413
OF VIRTUAL LISTENING SESSIONS

622
00:20:14,413 --> 00:20:15,481
WITH INDIVIDUALS AND

623
00:20:15,481 --> 00:20:16,382
ORGANIZATIONS FROM THE

624
00:20:16,382 --> 00:20:18,451
DISABILITY COMMUNITY.

625
00:20:18,451 --> 00:20:19,752
AND INDIVIDUALS REPRESENTING

626
00:20:19,752 --> 00:20:22,188
AUTISM AND IDD WERE INCLUDED IN

627
00:20:22,188 --> 00:20:22,822
THAT.

628
00:20:22,822 --> 00:20:24,056
AND THERE ARE ALSO SOME

629
00:20:24,056 --> 00:20:25,558
INTERVIEWS WITH FEDERAL SUBJECT

630
00:20:25,558 --> 00:20:26,859
MATTER EXPERTS THAT ARE

631
00:20:26,859 --> 00:20:28,294
UNDERWAY.

632
00:20:28,294 --> 00:20:29,595
AND THE WORKING GROUP

633
00:20:29,595 --> 00:20:30,696
IMPORTANTLY HAS PUBLISHED A

634
00:20:30,696 --> 00:20:33,866
REQUEST FOR INFORMATION CALLED

635
00:20:33,866 --> 00:20:35,067
"NOTICE OF AVAILABILITY AND

636
00:20:35,067 --> 00:20:36,936
REQUEST FOR INFORMATION, FEDERAL

637
00:20:36,936 --> 00:20:39,004
EVIDENCE AGENDA ON DISABILITY

638
00:20:39,004 --> 00:20:42,074
EQUITY" TO COLLECT PUBLIC INPUT

639
00:20:42,074 --> 00:20:43,709
ON THE USE OF DISABILITY DATA,

640
00:20:43,709 --> 00:20:46,779
HOW WE CAN ENSURE THAT FEDERAL

641
00:20:46,779 --> 00:20:48,881
DISABILITY DATA IS INCLUSIVE OF

642
00:20:48,881 --> 00:20:50,850
ALL DIFFERENT KINDS OF

643
00:20:50,850 --> 00:20:52,351
DISABILITIES, HOW TO MAKE THE

644
00:20:52,351 --> 00:20:54,653
DATA ACCESSIBLE, AND MANY OTHER

645
00:20:54,653 --> 00:20:57,723
RELATED ISSUES.

646
00:20:57,723 --> 00:20:59,458
AND THIS RFI WAS RELEASED ON MAY

647
00:20:59,458 --> 00:21:01,327
30TH AND IS CLOSING ON

648
00:21:01,327 --> 00:21:01,760
JULY 15TH.

649
00:21:01,760 --> 00:21:03,095
SO JUST IN ANOTHER WEEK.

650
00:21:03,095 --> 00:21:04,296
I WOULD HIGHLY ENCOURAGE MEMO

651
00:21:04,296 --> 00:21:08,667
WERS OMEMBERSOF OUR COMMITTEE AN

652
00:21:08,667 --> 00:21:09,969
THE PUBLIC WHO ARE INTERESTED IN

653
00:21:09,969 --> 00:21:11,704
DISABILITY DATA TO LOOK AT THIS

654
00:21:11,704 --> 00:21:12,738
RFI AND PROVIDE RESPONSES

655
00:21:12,738 --> 00:21:14,106
BECAUSE IT'S REALLY IMPORTANT WE

656
00:21:14,106 --> 00:21:18,277
GET REPRESENTATION OF AUTISM,

657
00:21:18,277 --> 00:21:20,146
IDD, OTHER

658
00:21:20,146 --> 00:21:23,215
NEURODIVERSITY-RELATED ISSUES IN

659
00:21:23,215 --> 00:21:24,283
THIS RFI SO THAT THE COMMITTEE

660
00:21:24,283 --> 00:21:27,019
CAN USE THAT INFORMATION TO

661
00:21:27,019 --> 00:21:28,721
FORMULATITY RECOMMENDATIONS

662
00:21:28,721 --> 00:21:29,755
AROUND DISABILITY DATA

663
00:21:29,755 --> 00:21:35,027
COLLECTIONS IN THE FUTURE.

664
00:21:35,027 --> 00:21:36,128
SO THE LINK IS PROVIDED THERE.

665
00:21:36,128 --> 00:21:37,396
THERE'S THE FEDERAL REGISTER

666
00:21:37,396 --> 00:21:37,630
NOTICE.

667
00:21:37,630 --> 00:21:38,964
IF YOU HAVE TROUBLE FINDING IT,

668
00:21:38,964 --> 00:21:40,366
YOU CAN ALSO EMAIL ME AND I'LL

669
00:21:40,366 --> 00:21:41,800
BE HAPPY TO SHARE THE RFI WITH

670
00:21:41,800 --> 00:21:46,939
YOU.

671
00:21:46,939 --> 00:21:48,674
FOR LEGISLATIVE UPDATES, I'D

672
00:21:48,674 --> 00:21:50,776
LIKE TO SHARE JUST A BRIEF

673
00:21:50,776 --> 00:21:52,044
UPDATE ABOUT THE CARES ACT AND

674
00:21:52,044 --> 00:21:55,681
WHAT'S HAPPENING.

675
00:21:55,681 --> 00:21:57,316
SO THE KEY PROVISIONS ARE

676
00:21:57,316 --> 00:21:58,551
RE-AUTHORIZATION OF THE IACC

677
00:21:58,551 --> 00:22:02,454
THROUGH SEPTEMBER 2029, AND

678
00:22:02,454 --> 00:22:04,423
CURRENTLY IMPROVEMENTS TO ENSURE

679
00:22:04,423 --> 00:22:05,958
APPROPRIATE CHANNELING OF

680
00:22:05,958 --> 00:22:07,827
RESOURCES TOWARDS THE MOST

681
00:22:07,827 --> 00:22:09,895
IMPACTFUL FORMS OF RESEARCH.

682
00:22:09,895 --> 00:22:10,896
LANGUAGE TO INCLUDE INDIVIDUALS

683
00:22:10,896 --> 00:22:12,198
ACROSS THE FULL SPECTRUM AND

684
00:22:12,198 --> 00:22:14,166
FULL LIFESPAN.

685
00:22:14,166 --> 00:22:15,267
AND INDIVIDUALS WITHIN THE

686
00:22:15,267 --> 00:22:16,435
AUTISM COMMUNITY HAVING AN

687
00:22:16,435 --> 00:22:18,671
OPPORTUNITY TO ENGAGE IN

688
00:22:18,671 --> 00:22:19,872
RESEARCH AND THE RESEARCH

689
00:22:19,872 --> 00:22:23,576
PROCESS AND OTHER ACTIVITIES.

690
00:22:23,576 --> 00:22:26,645
SO IN FEBRUARY, A BILL WAS

691
00:22:26,645 --> 00:22:28,547
INTRODUCED IN THE HOUSE, AND

692
00:22:28,547 --> 00:22:30,783
THAT WAS CO-SPONSORED BY

693
00:22:30,783 --> 00:22:31,984
REPRESENTATIVES CHRIS SMITH AND

694
00:22:31,984 --> 00:22:34,286
HENRY CUELLAR.

695
00:22:34,286 --> 00:22:36,021
ON THE 14TH OF FEBRUARY, THERE

696
00:22:36,021 --> 00:22:37,256
WAS A HOUSE COMMITTEE ON ENERGY

697
00:22:37,256 --> 00:22:39,325
AND COMMERCE, SUBCOMMITTEE ON

698
00:22:39,325 --> 00:22:45,798
HEALTH HEARING ABOUT THIS BILL.

699
00:22:45,798 --> 00:22:48,067
IN MAY, THERE WAS ANOTHER

700
00:22:48,067 --> 00:22:49,868
HEARING TO CONSIDER A MARKUP OF

701
00:22:49,868 --> 00:22:51,270
23 BILLS THAT INCLUDED THE

702
00:22:51,270 --> 00:22:54,874
AUTISM CARES ACT OF 2024.

703
00:22:54,874 --> 00:22:56,809
AND ON JUNE 12TH, THE HOUSE

704
00:22:56,809 --> 00:22:58,811
COMMITTEE ON ENERGY AND COMMERCE

705
00:22:58,811 --> 00:23:00,546
VOTED 42-0 TO REPORT THE BILL TO

706
00:23:00,546 --> 00:23:01,547
THE FULL HOUSE.

707
00:23:01,547 --> 00:23:03,716
SO THAT'S WHERE THAT SITS AT THE

708
00:23:03,716 --> 00:23:05,484
MOMENT, AND THE SENATE ALSO HAS

709
00:23:05,484 --> 00:23:15,427
THEIR VERSION.

710
00:23:15,427 --> 00:23:16,829
SO ANYWAY, THIS IS UNDERWAY.

711
00:23:16,829 --> 00:23:18,597
WE ARE HOPEFUL THAT IT WILL BE

712
00:23:18,597 --> 00:23:21,333
RE-AUTHORIZED BY ACCEPT 30TH,

713
00:23:21,333 --> 00:23:23,402
BUT OUR OFFICE WILL CREATE A

714
00:23:23,402 --> 00:23:25,504
WEBPAGE TO KEEP TRACK OF ALL THE

715
00:23:25,504 --> 00:23:26,905
DIFFERENT EVENTS AS WE DID IN

716
00:23:26,905 --> 00:23:28,974
PAST YEARS FOR THE

717
00:23:28,974 --> 00:23:29,975
RE-AUTHORIZATION, SO BE LOOKING

718
00:23:29,975 --> 00:23:30,743
FOR THAT PAGE.

719
00:23:30,743 --> 00:23:32,278
WE'LL SEND OUT AN EMAIL TO

720
00:23:32,278 --> 00:23:34,446
NOTIFY PEOPLE THAT IT'S UP AND

721
00:23:34,446 --> 00:23:35,681
WE'LL CONTINUE POSTING UPDATES

722
00:23:35,681 --> 00:23:39,818
THERE.

723
00:23:39,818 --> 00:23:41,353
I ALSO JUST WANTED TO POINT OUT

724
00:23:41,353 --> 00:23:43,522
THAT THERE WAS A PIECE OF

725
00:23:43,522 --> 00:23:45,190
LEGISLATION THAT IS GOING TO BE

726
00:23:45,190 --> 00:23:46,292
RECEIVING SOME ACTION TODAY

727
00:23:46,292 --> 00:23:48,694
THAT'S RELEVANT TO THE AUTISM

728
00:23:48,694 --> 00:23:51,297
COMMUNITY.

729
00:23:51,297 --> 00:23:56,335
SO THERE IS AN AMENDMENT IN A

730
00:23:56,335 --> 00:23:59,772
BILL FOR AGRICULTURE THAT IT

731
00:23:59,772 --> 00:24:00,939
WOULD PREVENT FDA FROM BANNING

732
00:24:00,939 --> 00:24:01,907
DEVICES THAT HAVE BEEN ORDERED

733
00:24:01,907 --> 00:24:03,876
FOR AN INDIVIDUAL BY A COURT,

734
00:24:03,876 --> 00:24:05,477
WHICH WOULD INCLUDE ELECTRIC

735
00:24:05,477 --> 00:24:06,845
SHOCK DEVICES.

736
00:24:06,845 --> 00:24:08,247
AND THE APPROPRIATIONS COMMITTEE

737
00:24:08,247 --> 00:24:09,748
IS EXPECTED TO MARK UP AND VOTE

738
00:24:09,748 --> 00:24:11,750
ON THE BILL TODAY.

739
00:24:11,750 --> 00:24:14,586
SO I'M SURE THAT ADVOCACY

740
00:24:14,586 --> 00:24:16,221
ORGANIZATIONS THAT ARE TRACKING

741
00:24:16,221 --> 00:24:18,090
THIS WILL BE KEEPING PEOPLE

742
00:24:18,090 --> 00:24:19,191
POSTED ON IT, BUT JUST WANTED

743
00:24:19,191 --> 00:24:21,060
YOU TO BE AWARE OF THAT

744
00:24:21,060 --> 00:24:23,862
ACTIVITY.

745
00:24:23,862 --> 00:24:25,331
SO FOR FEDERAL COMMITTEE

746
00:24:25,331 --> 00:24:26,965
UPDATES, I'M GOING TO MENTION A

747
00:24:26,965 --> 00:24:28,500
FEW UPDATES FROM DIFFERENT

748
00:24:28,500 --> 00:24:29,134
COMMITTEES.

749
00:24:29,134 --> 00:24:31,670
SO THE INTERAGENCY COMMITTEE ON

750
00:24:31,670 --> 00:24:32,671
DISABILITY RESEARCH JUST RELEASE

751
00:24:32,671 --> 00:24:36,575
A COUPLE OF IMPORTANT DOCUMENTS.

752
00:24:36,575 --> 00:24:39,211
SO THERE IS A WHITE PAPER ON THE

753
00:24:39,211 --> 00:24:41,180
FEDERAL STATUTORY DEFINITIONS OF

754
00:24:41,180 --> 00:24:42,281
DISABILITY, WHICH HAS BEEN

755
00:24:42,281 --> 00:24:44,550
UPDATED NOW TO REFLECT THE

756
00:24:44,550 --> 00:24:45,651
LATEST IN DISABILITY

757
00:24:45,651 --> 00:24:45,984
DEFINITIONS.

758
00:24:45,984 --> 00:24:49,521
YOU MAY BE INTERESTED IN

759
00:24:49,521 --> 00:24:50,956
CHECKING THAT OUT, AND WE WILL

760
00:24:50,956 --> 00:24:52,391
POST IT ON THE IACC WEBSITE

761
00:24:52,391 --> 00:24:52,658
SOMEWHERE.

762
00:24:52,658 --> 00:24:57,429
WE WILL GET THAT THERE AS WELL.

763
00:24:57,429 --> 00:24:59,064
THE ICDR ALSO RELEASED THE

764
00:24:59,064 --> 00:25:00,599
SURVEYING THE LANDSCAPE OF

765
00:25:00,599 --> 00:25:02,568
DISABILITY DATA AND STATISTICS

766
00:25:02,568 --> 00:25:04,203
TOOLKIT THAT HAS INFORMATION

767
00:25:04,203 --> 00:25:05,204
ABOUT DISABILITY DATA

768
00:25:05,204 --> 00:25:06,305
COLLECTIONS.

769
00:25:06,305 --> 00:25:08,640
THE ICDR HELD A FEW DIFFERENT

770
00:25:08,640 --> 00:25:10,409
LUNCH AND LEARN WEBINARS, AND

771
00:25:10,409 --> 00:25:12,411
THEIR LATEST WAS A SERIES OF

772
00:25:12,411 --> 00:25:13,412
PRESENTATIONS BY REPRESENTATIVES

773
00:25:13,412 --> 00:25:15,247
OF FEDERAL AGENCIES THAT PROVIDE

774
00:25:15,247 --> 00:25:16,882
FUNDING FOR DISABILITY AND REHAB

775
00:25:16,882 --> 00:25:17,750
RESEARCH.

776
00:25:17,750 --> 00:25:19,318
AND THEY ALSO HELD THEIR ANNUAL

777
00:25:19,318 --> 00:25:20,919
STAKEHOLDER MEETING RECENTLY,

778
00:25:20,919 --> 00:25:22,688
AND THESE ARE RECORDED AN YOU

779
00:25:22,688 --> 00:25:24,323
CAN FIND THEM ON THE ICDR

780
00:25:24,323 --> 00:25:27,826
WEBSITE.

781
00:25:27,826 --> 00:25:29,595
THE RAISE FAMILY CAREGIVING

782
00:25:29,595 --> 00:25:30,562
ADVISORY COUNCIL, WE'LL BE

783
00:25:30,562 --> 00:25:32,097
HEARING FROM TODAY BUT THEY HAD

784
00:25:32,097 --> 00:25:33,198
A JOINT MEETING RECENTLY WITH

785
00:25:33,198 --> 00:25:35,067
THE ADVISORY COUNCIL TO SUPPORT

786
00:25:35,067 --> 00:25:36,034
GRANDPARENTS RAISING

787
00:25:36,034 --> 00:25:37,403
GRANDCHILDREN ON JUNE 13TH, AND

788
00:25:37,403 --> 00:25:38,771
WE WILL HEAR UPDATES ON THAT

789
00:25:38,771 --> 00:25:42,374
LATER.

790
00:25:42,374 --> 00:25:42,875
THE NATIONAL COUNCIL ON

791
00:25:42,875 --> 00:25:43,809
DISABILITY RECENTLY HELD A

792
00:25:43,809 --> 00:25:45,878
MEETING ON JUNE 27TH AND WE

793
00:25:45,878 --> 00:25:47,946
PROVIDED THE LINK FOR THAT IN

794
00:25:47,946 --> 00:25:49,381
THAT MEETING THERE.

795
00:25:49,381 --> 00:25:52,484
THE DISABILITY ADVISORY

796
00:25:52,484 --> 00:25:54,186
COMMITTEE MET ON MAY 16TH AND

797
00:25:54,186 --> 00:25:56,955
INCLUDED A DIALOGUE ON DIGITAL

798
00:25:56,955 --> 00:25:58,057
ACCESSIBILITY, AND YOU CAN WATCH

799
00:25:58,057 --> 00:26:02,327
THE RECORDING AT THE LINK

800
00:26:02,327 --> 00:26:04,062
PROVIDED.

801
00:26:04,062 --> 00:26:05,931
THE COORDINATING COUNCIL ON

802
00:26:05,931 --> 00:26:08,967
ACCESS AND MOBILITY HAD AN

803
00:26:08,967 --> 00:26:11,003
UPDATE THAT THE FEDERAL TRANSIT

804
00:26:11,003 --> 00:26:11,670
ADMINISTRATION ANNOUNCED THAT 17

805
00:26:11,670 --> 00:26:12,604
PROJECTS IN 15 STATES WILL

806
00:26:12,604 --> 00:26:14,239
RECEIVE FUNDING TO INCLUDE

807
00:26:14,239 --> 00:26:15,107
PUBLIC TRANSPORTATION FOR PEOPLE

808
00:26:15,107 --> 00:26:18,477
WITH DISABILITIES.

809
00:26:18,477 --> 00:26:19,378
OLDER ADULTS AND INDIVIDUALS

810
00:26:19,378 --> 00:26:20,979
WITH LOW INCOMES, SO WE PROVIDED

811
00:26:20,979 --> 00:26:22,514
SOME INFORMATION ON THE LINK

812
00:26:22,514 --> 00:26:25,684
THERE ABOUT THAT.

813
00:26:25,684 --> 00:26:26,785
THE FEDERAL PARTNERS IN

814
00:26:26,785 --> 00:26:27,653
TRANSITION IS CONTINUING TO WORK

815
00:26:27,653 --> 00:26:29,188
ON THEIR STRATEGIC PLAN THAT IS

816
00:26:29,188 --> 00:26:33,225
ABOUT YOUTH WITH DISABILITIES.

817
00:26:33,225 --> 00:26:33,892
AND THEIR GENERAL ASSEMBLY

818
00:26:33,892 --> 00:26:35,527
MEETING WAS HELD ON MAY 16TH

819
00:26:35,527 --> 00:26:38,063
FEATURING A PRESENTATION ON AI

820
00:26:38,063 --> 00:26:39,565
AND DISABILITY EMPLOYMENT AND

821
00:26:39,565 --> 00:26:40,466
THEY'RE PLANNING THEIR NEXT

822
00:26:40,466 --> 00:26:43,669
MEETINGS FOR SEPTEMBER.

823
00:26:43,669 --> 00:26:45,437
THE CHILDREN'S INTERAGENCY

824
00:26:45,437 --> 00:26:46,472
COORDINATING COUNCIL IS HOLDING

825
00:26:46,472 --> 00:26:48,507
AN EVENT TO EXPLORE ISSUES AND

826
00:26:48,507 --> 00:26:50,042
OPPORTUNITIES RELATED TO BENEFIT

827
00:26:50,042 --> 00:26:51,610
ACCESS AND UTILIZATION FOR

828
00:26:51,610 --> 00:26:52,744
CHILDREN AND THEIR FAMILIES THAT

829
00:26:52,744 --> 00:26:55,447
ARE EXPERIENCING POVERTY.

830
00:26:55,447 --> 00:26:56,648
SO YOU MAY BE INTERESTED IN THAT

831
00:26:56,648 --> 00:26:58,183
AND WE'VE PROVIDED THE

832
00:26:58,183 --> 00:27:00,819
REGISTRATION LINK.

833
00:27:00,819 --> 00:27:03,255
AGAIN I TRY TO GIVE YOU UPDATES

834
00:27:03,255 --> 00:27:04,323
ABOUT THESE OTHER COMMITTEES

835
00:27:04,323 --> 00:27:05,224
BECAUSE THEY'RE DOING REALLY

836
00:27:05,224 --> 00:27:06,291
IMPORTANT WORK THAT INTERSECTS

837
00:27:06,291 --> 00:27:06,859
WITH OUR WORK.

838
00:27:06,859 --> 00:27:08,260
WE DEFINITELY DO NOT WANT TO

839
00:27:08,260 --> 00:27:09,161
DUPLICATE EFFORT BUT WE ALSO

840
00:27:09,161 --> 00:27:10,996
WANT TO BE AWARE OF WHAT'S

841
00:27:10,996 --> 00:27:12,531
HAPPENING IN THESE OTHER FEDERAL

842
00:27:12,531 --> 00:27:15,200
AGENCY COMMITTEES.

843
00:27:15,200 --> 00:27:16,502
FEDERAL ADVISORY COMMITTEES.

844
00:27:16,502 --> 00:27:19,471
SO A COUPLE OF UPDATES ON

845
00:27:19,471 --> 00:27:20,339
FEDERAL DEPARTMENTS AND

846
00:27:20,339 --> 00:27:20,772
AGENCIES.

847
00:27:20,772 --> 00:27:23,642
THE U.S. DEPARTMENT OF HEALTH

848
00:27:23,642 --> 00:27:24,710
AND HUMAN SERVICES MARKS THE

849
00:27:24,710 --> 00:27:25,911
ONE-YEAR ANNIVERSARY OF

850
00:27:25,911 --> 00:27:26,478
PRESIDENT BIDEN'S EXECUTIVE

851
00:27:26,478 --> 00:27:28,780
ORDER ON INCREASING ACCESS TO

852
00:27:28,780 --> 00:27:30,082
HIGH-QUALITY CARE AND SUPPORTING

853
00:27:30,082 --> 00:27:31,183
CAREGIVERS.

854
00:27:31,183 --> 00:27:31,917
WHICH GOES ALONG WITH OUR THEME

855
00:27:31,917 --> 00:27:34,553
TODAY.

856
00:27:34,553 --> 00:27:35,854
AND WE HAVE A LINK TO THE

857
00:27:35,854 --> 00:27:37,189
STATEMENTS.

858
00:27:37,189 --> 00:27:37,823
THE ADMINISTRATION FOR COMMUNITY

859
00:27:37,823 --> 00:27:38,957
LIVING ANNOUNCED NEARLY

860
00:27:38,957 --> 00:27:40,459
$2 MILLION TO SUPPORT STATE

861
00:27:40,459 --> 00:27:41,360
IMPLEMENTATION OF THE NATIONAL

862
00:27:41,360 --> 00:27:43,428
STRATEGY TO SUPPORT FAMILY

863
00:27:43,428 --> 00:27:44,429
CAREGIVERS, WHICH I'M SURE WE'LL

864
00:27:44,429 --> 00:27:45,397
BE HEARING MORE ABOUT TODAY AS

865
00:27:45,397 --> 00:27:48,133
WELL.

866
00:27:48,133 --> 00:27:50,903
THE U.S. DEPARTMENT OF JUSTICE'S

867
00:27:50,903 --> 00:27:53,005
CIVIL RIGHTS DIVISION AND HHS

868
00:27:53,005 --> 00:27:54,673
ADMINISTRATIOADMINISTRATION FORY

869
00:27:54,673 --> 00:27:55,240
LIVING AND OFFICE FOR CIVIL

870
00:27:55,240 --> 00:27:56,775
RIGHTS HELD AN EVENT TO

871
00:27:56,775 --> 00:27:58,176
CELEBRATE THE 25TH ANNIVERSARY

872
00:27:58,176 --> 00:28:02,381
OF THE OLMSTEAD DECISION.

873
00:28:02,381 --> 00:28:03,582
SO YOU CAN SEE THE RECORDING

874
00:28:03,582 --> 00:28:05,918
THERE ON THAT LINK, AND ACL DID

875
00:28:05,918 --> 00:28:07,619
A BLOG POST ON IT.

876
00:28:07,619 --> 00:28:09,821
AND THE HHS OFFICE FOR CIVIL

877
00:28:09,821 --> 00:28:12,624
RIGHTS ALSO FINALIZED A RULE

878
00:28:12,624 --> 00:28:13,425
STRENGTHENING PROTECTIONS

879
00:28:13,425 --> 00:28:14,726
AGAINST DISABILITY

880
00:28:14,726 --> 00:28:16,328
DISCRIMINATION UNDER SECTION 504

881
00:28:16,328 --> 00:28:17,896
OF THE REHAB ACT, AND THERE'S A

882
00:28:17,896 --> 00:28:22,234
PRESS RELEASE FOR THAT.

883
00:28:22,234 --> 00:28:24,169
I ALSO WANTED TO HIGHLIGHT THAT

884
00:28:24,169 --> 00:28:25,737
NIMH HAS A NEW WEBINAR SERIES

885
00:28:25,737 --> 00:28:26,705
COMING UP THAT YOU MIGHT BE

886
00:28:26,705 --> 00:28:27,239
INTERESTED IN.

887
00:28:27,239 --> 00:28:28,874
IT'S CALLED THE DISABILITY

888
00:28:28,874 --> 00:28:29,975
EQUITY AND MENTAL HEALTH

889
00:28:29,975 --> 00:28:33,045
RESEARCH WEBINAR SERIES.

890
00:28:33,045 --> 00:28:34,746
AND THE FIRST TWO WEBINARS HAVE

891
00:28:34,746 --> 00:28:35,447
BEEN SCHEDULED.

892
00:28:35,447 --> 00:28:37,616
THE FIRST ONE IS ON AUGUST 8TH

893
00:28:37,616 --> 00:28:40,586
FEATURING NEV JONES ON

894
00:28:40,586 --> 00:28:41,153
TRANSFORMING MENTAL HEALTH

895
00:28:41,153 --> 00:28:43,589
DISABILITY RESEARCH THROUGH LI 

896
00:28:43,589 --> 00:28:45,824
LIVED EXPERIENCE, LEADERSHIP AND

897
00:28:45,824 --> 00:28:46,491
CO-PRODUCTION.

898
00:28:46,491 --> 00:28:49,328
THE SECOND ONE IS DIELLE

899
00:28:49,328 --> 00:28:50,862
LUNDBERG AND JESSICA CHEN,

900
00:28:50,862 --> 00:28:52,497
FRAMEWORK FOR UNDERSTANDING

901
00:28:52,497 --> 00:28:53,265
STRUCTURAL ABLEISM IN

902
00:28:53,265 --> 00:28:53,565
HEALTHCARE.

903
00:28:53,565 --> 00:28:54,800
THERE WILL BE ADDITIONAL

904
00:28:54,800 --> 00:28:55,801
WEBINARS AS WELL.

905
00:28:55,801 --> 00:28:57,970
SO KEEP AN EYE OPEN FOR THAT.

906
00:28:57,970 --> 00:29:00,339
AND WE'LL BE PUTTING THAT UP ON

907
00:29:00,339 --> 00:29:01,573
THE EVENTS SECTION OF OUR

908
00:29:01,573 --> 00:29:08,847
WEBSITE AS WELL.

909
00:29:08,847 --> 00:29:10,949
I WANTED TO SHARE AN UPDATE ON A

910
00:29:10,949 --> 00:29:11,950
NON-GOVERNMENTAL ACTIVITY THAT I

911
00:29:11,950 --> 00:29:13,018
PARTICIPATED IN RECENTLY.

912
00:29:13,018 --> 00:29:15,754
THIS JUNE, THE 17TH SESSION OF

913
00:29:15,754 --> 00:29:17,522
THE CONFERENCE OF STATES PARTIES

914
00:29:17,522 --> 00:29:20,525
TO THE UN CONVENTION ON THE

915
00:29:20,525 --> 00:29:21,793
RIGHTS OF PERSONS WITH

916
00:29:21,793 --> 00:29:22,427
DISABILITIES TOOK PLACE IN

917
00:29:22,427 --> 00:29:23,228
NEW YORK.

918
00:29:23,228 --> 00:29:25,631
THIS IS A MEETING OF OVER 150

919
00:29:25,631 --> 00:29:28,767
NATIONS TO TALK ABOUT DISABILITY

920
00:29:28,767 --> 00:29:30,135
RIGHTS AROUND THE WORLD AND THE

921
00:29:30,135 --> 00:29:32,004
OVERARCHING THEMES FOR THIS YEAR

922
00:29:32,004 --> 00:29:33,438
WERE RE-THINKING DISABILITY

923
00:29:33,438 --> 00:29:34,973
INCLUSION IN PREPARATION FOR THE

924
00:29:34,973 --> 00:29:36,708
SUMMIT OF THE FUTURE.

925
00:29:36,708 --> 00:29:39,544
AND SOME ADDITIONAL THEMES WERE

926
00:29:39,544 --> 00:29:40,312
DISABILITY EMPLOYMENT,

927
00:29:40,312 --> 00:29:42,614
TECHNOLOGY INNOVATION, INCLUDING

928
00:29:42,614 --> 00:29:44,049
A LOT ABOUT A.I., AND THE

929
00:29:44,049 --> 00:29:46,118
PERSONS WITH DISABILITY AND HOW

930
00:29:46,118 --> 00:29:48,887
THEY'RE INCLUDED IN RESPONSE TO

931
00:29:48,887 --> 00:29:50,522
HUMANITARIAN EMERGENCIES.

932
00:29:50,522 --> 00:29:53,892
AND I HAD THE PRIVILEGE OF

933
00:29:53,892 --> 00:29:54,993
SERVING ON THE U.S. DELEGATION

934
00:29:54,993 --> 00:29:56,261
TO THE U.N. FOR THIS MEETING,

935
00:29:56,261 --> 00:29:58,096
ALONG WITH OFFICIALS FROM THE

936
00:29:58,096 --> 00:30:01,233
U.S. DEPARTMENT OF STATE, USAID,

937
00:30:01,233 --> 00:30:03,669
ACL, CDC, AND THE U.S. ACCESS

938
00:30:03,669 --> 00:30:04,636
BOARD.

939
00:30:04,636 --> 00:30:07,806
AND I TRIED TO BE AVAILABLE TO

940
00:30:07,806 --> 00:30:09,241
PROVIDE ASSISTANCE WITH REGARD

941
00:30:09,241 --> 00:30:11,643
TO AUTISM, NEURODIVERSITY AND

942
00:30:11,643 --> 00:30:11,810
IDD.

943
00:30:11,810 --> 00:30:13,612
AND I ALSO WANTED TO POINT OUT

944
00:30:13,612 --> 00:30:18,984
THAT IACC MEMBER DENA DP. ASSNER

945
00:30:18,984 --> 00:30:20,819
SPOKE ON EMPLOYMENT AND FAMILY

946
00:30:20,819 --> 00:30:22,788
SUPPORT AT A SIDE EVENT THAT WAS

947
00:30:22,788 --> 00:30:23,689
SPONSORED BY THE GOVERNMENT OF

948
00:30:23,689 --> 00:30:24,122
MALTA.

949
00:30:24,122 --> 00:30:25,991
IT WAS WONDERFUL TO SEE THERE

950
00:30:25,991 --> 00:30:26,858
WERE THREE SEPARATE SIDE EVENTS

951
00:30:26,858 --> 00:30:28,193
THAT WERE FOCUSED ON AUTISM.

952
00:30:28,193 --> 00:30:30,262
SO THERE WAS ONE THAT WAS AN

953
00:30:30,262 --> 00:30:31,563
AUSTRALIAN EVENT FEATURING THEIR

954
00:30:31,563 --> 00:30:32,898
NATIONAL STRATEGY AND THEY HAD

955
00:30:32,898 --> 00:30:35,834
VERY HIGH LEVEL GOVERNMENT

956
00:30:35,834 --> 00:30:37,936
OFFICIALS FROM AUSTRALIA ATTEND

957
00:30:37,936 --> 00:30:41,773
THE MEETING TO TALK ABOUT THEIR

958
00:30:41,773 --> 00:30:42,641
COORDINATION AROUND AUTISM AND

959
00:30:42,641 --> 00:30:44,042
THEY HAVE NOT ONLY A NATIONAL

960
00:30:44,042 --> 00:30:45,143
STRATEGY FOR AUTISM BUT THEY

961
00:30:45,143 --> 00:30:46,144
HAVE ONE FOR DISABILITY THAT

962
00:30:46,144 --> 00:30:49,648
THEY'RE TRYING TO COORDINATE,

963
00:30:49,648 --> 00:30:50,749
AND THEY'RE PUTTING A NUMBER OF

964
00:30:50,749 --> 00:30:51,850
DIFFERENT PROGRAMS IN PLACE TO

965
00:30:51,850 --> 00:30:53,552
TRY TO SUPPORT PEOPLE ON THE

966
00:30:53,552 --> 00:30:54,820
AUTISM SPECTRUM, WHICH WAS

967
00:30:54,820 --> 00:30:55,554
REALLY EXCITING.

968
00:30:55,554 --> 00:30:57,522
AND THERE WAS A SOUTH AFRICAN

969
00:30:57,522 --> 00:30:59,191
VIRTUAL EVENT FEATURING AUTISTIC

970
00:30:59,191 --> 00:31:02,494
VOICES IN AFRICA.

971
00:31:02,494 --> 00:31:04,029
AND THERE WAS A COLLABORATIVE

972
00:31:04,029 --> 00:31:06,998
EVENT SPONSORED BY IRELAND, NEW

973
00:31:06,998 --> 00:31:09,101
ZEALAND, HUNGARY AND THE WHO ON

974
00:31:09,101 --> 00:31:10,168
SUPPORTING AUTISTIC PEOPLE IN

975
00:31:10,168 --> 00:31:11,803
SOCIETY AND THEY TALKED A LOT

976
00:31:11,803 --> 00:31:12,904
ABOUT SELF ADVOCACY.

977
00:31:12,904 --> 00:31:14,139
PERSONALLY I FELT THIS WAS

978
00:31:14,139 --> 00:31:16,108
REALLY IMPORTANT THAT AUTISM WAS

979
00:31:16,108 --> 00:31:17,909
GETTING THIS LEVEL OF VISIBILITY

980
00:31:17,909 --> 00:31:19,945
AT THE U.N., AND HOPEFULLY THAT

981
00:31:19,945 --> 00:31:23,215
WILL CONTINUE.

982
00:31:23,215 --> 00:31:24,750
SO KEEP YOUR EYES OPEN FOR THAT

983
00:31:24,750 --> 00:31:25,350
NEXT SUMMER.

984
00:31:25,350 --> 00:31:28,053
IT TAKES PLACE IN JUNE.

985
00:31:28,053 --> 00:31:29,955
AND I THINK THIS IS MY FINAL

986
00:31:29,955 --> 00:31:30,188
UPDATE.

987
00:31:30,188 --> 00:31:31,490
I WANTED TO POINT OUT THAT

988
00:31:31,490 --> 00:31:33,692
THERE'S A NEW NEURODIVERSITY AS

989
00:31:33,692 --> 00:31:35,594
WORK PLAYBOOK, FEDERAL EDITION,

990
00:31:35,594 --> 00:31:36,394
THAT WAS DEVELOPED BY THE

991
00:31:36,394 --> 00:31:38,263
UNIVERSITY OF WASHINGTON AIMED

992
00:31:38,263 --> 00:31:40,465
AT HELPING FEDERAL AGENCIES

993
00:31:40,465 --> 00:31:41,066
ESTABLISH NEURODIVERSITY

994
00:31:41,066 --> 00:31:42,768
EMPLOYMENT PROGRAMS AND CREATE A

995
00:31:42,768 --> 00:31:45,103
MORE INCLUSIVE WORKPLACE.

996
00:31:45,103 --> 00:31:48,607
AND SO FEDERAL PARTNERS, YOU'LL

997
00:31:48,607 --> 00:31:50,675
WANT TO CHECK THAT OUT AND IF

998
00:31:50,675 --> 00:31:52,778
YOU'RE TRYING TO SUPPORT

999
00:31:52,778 --> 00:31:53,445
NEURODIVERSITY EMPLOYMENT IN

1000
00:31:53,445 --> 00:31:54,646
YOUR AGENCY, THAT WILL BE AN

1001
00:31:54,646 --> 00:31:56,181
IMPORTANT GUIDING DOCUMENT TO BE

1002
00:31:56,181 --> 00:32:01,753
HELPFUL TO THEM.

1003
00:32:01,753 --> 00:32:02,521
EVERYTHING THAT I TALKED ABOUT

1004
00:32:02,521 --> 00:32:05,056
IS IN A DOCUMENT THAT YOU'VE ALL

1005
00:32:05,056 --> 00:32:05,390
RECEIVED.

1006
00:32:05,390 --> 00:32:06,792
IT POSTED ON THE WEB AND IT'S

1007
00:32:06,792 --> 00:32:08,326
JUST MORE IN PARAGRAPH FORMAT.

1008
00:32:08,326 --> 00:32:12,798
SO ARE THERE ANY QUESTIONS ABOUT

1009
00:32:12,798 --> 00:32:18,303
THIS UPDATE THAT I'VE PROVIDED?

1010
00:32:18,303 --> 00:32:20,272
OH, YES, YETTA.

1011
00:32:20,272 --> 00:32:21,473
>> SO JUST ONE THOUGHT.

1012
00:32:21,473 --> 00:32:22,541
I'M THINKING ABOUT ONE OF THE

1013
00:32:22,541 --> 00:32:24,743
FIRST UPDATES YOU PROVIDED WITH

1014
00:32:24,743 --> 00:32:26,745
THE RFA THAT'S OPEN FOR FIVE

1015
00:32:26,745 --> 00:32:27,579
DAYS, THAT WAS NEW INFORMATION

1016
00:32:27,579 --> 00:32:29,281
TO ME, AND I WONDER IF THERE'S A

1017
00:32:29,281 --> 00:32:32,617
WAY FOR US TO -- FOR YOUR OFFICE

1018
00:32:32,617 --> 00:32:33,952
TO SHARE OUT WITH THE COMMITTEE

1019
00:32:33,952 --> 00:32:35,954
A LITTLE BIT EARLIER, LIKE WHEN

1020
00:32:35,954 --> 00:32:37,923
THINGS ARE -- LIKE IF IT'S GOING

1021
00:32:37,923 --> 00:32:39,357
TO BE CLOSE TO THE TIME THAT WE

1022
00:32:39,357 --> 00:32:41,193
HAVE THE MEETING AND IT'S DUE,

1023
00:32:41,193 --> 00:32:44,162
JUST BECAUSE I WOULD LOVE TO

1024
00:32:44,162 --> 00:32:45,697
PROVIDE A COMMENT BUT GIVEN MY

1025
00:32:45,697 --> 00:32:46,565
SCHEDULE, I DON'T KNOW IF I'M

1026
00:32:46,565 --> 00:32:48,233
GOING TO BE ABLE TO DO IT IN

1027
00:32:48,233 --> 00:32:48,800
FIVE DAYS.

1028
00:32:48,800 --> 00:32:50,769
SO I THINK IT'S IMPORTANT FOR US

1029
00:32:50,769 --> 00:32:53,038
TO HAVE THIS INFORMATION JUST A

1030
00:32:53,038 --> 00:32:54,673
LITTLE BIT EARLIER OR IF THERE

1031
00:32:54,673 --> 00:32:56,341
IS A WAY, SO THAT'S ONE OPTION.

1032
00:32:56,341 --> 00:32:57,642
ANOTHER OPTION IS IF THERE IS A

1033
00:32:57,642 --> 00:32:59,978
WAY TO BE LINKEDIN FOR THOSE OF

1034
00:32:59,978 --> 00:33:02,080
US WHO ARE NOT FEDERAL MEMBERS

1035
00:33:02,080 --> 00:33:07,118
TO KNOW WILLIS SERV WHICH LIST E

1036
00:33:07,118 --> 00:33:09,187
ON, NOT THAT WE NEED MORE EMAIL

1037
00:33:09,187 --> 00:33:10,522
BUT TO KNOW WHEN THESE THINGS

1038
00:33:10,522 --> 00:33:11,723
ARE COMING DOWN THE PIKE, I

1039
00:33:11,723 --> 00:33:12,657
THINK WOULD BE HELPFUL.

1040
00:33:12,657 --> 00:33:13,959
>> WE ACTUALLY ARE
THINKING

1041
00:33:13,959 --> 00:33:17,362
ABOUT DOING MAYBE A MONTHLY OR I

1042
00:33:17,362 --> 00:33:18,864
DON'T KNOW WHAT THE TIME FRAME

1043
00:33:18,864 --> 00:33:20,732
WOULD BE UPDATE EMAIL.

1044
00:33:20,732 --> 00:33:22,434
I KNOW PEOPLE GET OVERWHELMED

1045
00:33:22,434 --> 00:33:24,669
WITH EMAILS AND WE DON'T WANT TO

1046
00:33:24,669 --> 00:33:26,104
FLOOD YOU WITH EMAILS, BUT THERE

1047
00:33:26,104 --> 00:33:27,072
ARE TIMES WHEN THERE ARE THINGS

1048
00:33:27,072 --> 00:33:28,006
LIKE THIS COMING UP.

1049
00:33:28,006 --> 00:33:29,841
I ALSO -- I DID POST IT ON MY

1050
00:33:29,841 --> 00:33:31,276
LINKEDIN BUT I KNOW NOT

1051
00:33:31,276 --> 00:33:32,277
EVERYBODY READS ALL THE SOCIAL

1052
00:33:32,277 --> 00:33:34,446
MEDIA ALL THE TIME.

1053
00:33:34,446 --> 00:33:36,114
AND WE DID TWEET IT.

1054
00:33:36,114 --> 00:33:39,618
>> I'M TRYING NOT TRYING
TO GIVU

1055
00:33:39,618 --> 00:33:39,918
MORE WORK.

1056
00:33:39,918 --> 00:33:41,119
>> NO, NOT AT ALL.

1057
00:33:41,119 --> 00:33:42,721
>> BUT AS WE THINK ABOUT
HOW DO

1058
00:33:42,721 --> 00:33:43,922
WE MAKE THESE THINGS MORE

1059
00:33:43,922 --> 00:33:44,689
ACCESSIBLE TO THE LARGER

1060
00:33:44,689 --> 00:33:47,259
COMMUNITY AND WE WANT A DIVERSE,

1061
00:33:47,259 --> 00:33:49,394
YOU KNOW, COMMENTS COMING IN, I

1062
00:33:49,394 --> 00:33:50,595
THINK GIVING MORE TIME AND SPACE

1063
00:33:50,595 --> 00:33:51,830
FOR THAT WOULD BE HELPFUL.

1064
00:33:51,830 --> 00:33:52,898
>> ABSOLUTELY.

1065
00:33:52,898 --> 00:33:54,666
SO WE COULD MAYBE FOR THE NEXT

1066
00:33:54,666 --> 00:33:56,401
ITERATION OF THE IACC LOOK AT

1067
00:33:56,401 --> 00:33:57,235
HAVING -- I DON'T KNOW IF IT

1068
00:33:57,235 --> 00:33:59,504
WOULD BE A WEEKLY, BIWEEKLY OR

1069
00:33:59,504 --> 00:34:00,772
MONTHLY EMAIL THAT SUMMARIZES

1070
00:34:00,772 --> 00:34:01,773
SOME OF THESE THINGS.

1071
00:34:01,773 --> 00:34:03,008
BUT IF YOU'RE LOOKING FOR THE

1072
00:34:03,008 --> 00:34:04,075
INFORMATION IN A QUICK WAY, YOU

1073
00:34:04,075 --> 00:34:05,644
CAN ALSO VISIT MY LINKEDIN.

1074
00:34:05,644 --> 00:34:10,015
I DID A POST ABOUT IT.

1075
00:34:10,015 --> 00:34:11,549
AND WE WILL BE HAPPY TO SEND TO

1076
00:34:11,549 --> 00:34:12,417
YOU DIRECTLY AS WELL.

1077
00:34:12,417 --> 00:34:14,085
BUT IT WOULD BE GREAT TO HAVE

1078
00:34:14,085 --> 00:34:14,886
COMMENTS FROM THE AUTISM

1079
00:34:14,886 --> 00:34:17,689
COMMUNITY.

1080
00:34:17,689 --> 00:34:19,124
 INCLUDED THERE.

1081
00:34:19,124 --> 00:34:23,495
ANY OTHER COMMENTS OR QUESTIONS?

1082
00:34:23,495 --> 00:34:23,795
ALL RIGHT.

1083
00:34:23,795 --> 00:34:26,398
SO THEN WE WILL MOVE ON TO ROUND

1084
00:34:26,398 --> 00:34:28,199
ROUNDROBIN.

1085
00:34:28,199 --> 00:34:29,834
SO WE HAVE A FEW MINUTES FOR

1086
00:34:29,834 --> 00:34:31,603
PEOPLE TO SHARE ANY UPDATE FROM

1087
00:34:31,603 --> 00:34:33,138
YOUR AGENCIES OR YOUR

1088
00:34:33,138 --> 00:34:35,106
ORGANIZATIONS OR JUST YOUR OWN

1089
00:34:35,106 --> 00:34:36,107
PERSONAL WORK IN THE AUTISM

1090
00:34:36,107 --> 00:34:38,843
FIELD.

1091
00:34:38,843 --> 00:34:39,711
IF YOU HAVE ANYTHING TO SHARE.

1092
00:34:39,711 --> 00:34:41,046
IS THERE ANYONE THAT WOULD LIKE

1093
00:34:41,046 --> 00:34:41,813
TO SHARE?

1094
00:34:41,813 --> 00:34:42,914
I'M JUST LOOKING AROUND THE

1095
00:34:42,914 --> 00:34:43,348
ROOM.

1096
00:34:43,348 --> 00:34:47,218
I'M LOOKING AT JALYNN.

1097
00:34:47,218 --> 00:34:48,386
>> THERE'S A VERY
INTERESTING

1098
00:34:48,386 --> 00:34:52,657
PROJECT THAT HAS BEEN STARTED BY

1099
00:34:52,657 --> 00:34:54,960
THE HUNTSMANS IN UTAH AND IT'S

1100
00:34:54,960 --> 00:34:56,728
CALLED "STOP THE STIGMA

1101
00:34:56,728 --> 00:34:59,130
TOGETHER," AND IT'S ABOUT MENTAL

1102
00:34:59,130 --> 00:34:59,564
HEALTHCARE.

1103
00:34:59,564 --> 00:35:01,633
THEY HAD THEIR SECOND SUMMIT

1104
00:35:01,633 --> 00:35:03,535
ABOUT THREE WEEKS AGO, AND I'VE

1105
00:35:03,535 --> 00:35:04,736
HAD THE OPPORTUNITY OF

1106
00:35:04,736 --> 00:35:06,371
PARTICIPATING FOR TWO TIMES WITH

1107
00:35:06,371 --> 00:35:08,106
THEM AS THEY'RE LAUNCHING THIS

1108
00:35:08,106 --> 00:35:09,140
ACROSS THE COUNTRY.

1109
00:35:09,140 --> 00:35:10,141
AND ONE OF THE THINGS THAT WE'RE

1110
00:35:10,141 --> 00:35:13,511
VERY INTERESTED IN IS

1111
00:35:13,511 --> 00:35:15,280
REPRESENTING THE AUTISTIC

1112
00:35:15,280 --> 00:35:19,751
POPULATION AND ALSO CAREGIVERS.

1113
00:35:19,751 --> 00:35:21,519
BECAUSE AUTISM IS NOT A MENTAL

1114
00:35:21,519 --> 00:35:22,954
HEALTH CONDITION BUT THERE ARE

1115
00:35:22,954 --> 00:35:25,123
PEOPLE ON THE SPECTRUM WHO WILL

1116
00:35:25,123 --> 00:35:27,826
HAVE MENTAL HEALTH CHALLENGES,

1117
00:35:27,826 --> 00:35:29,527
AND THAT IS NOT BEING ADDRESSED

1118
00:35:29,527 --> 00:35:32,364
FULLY YET, AND PEOPLE ARE STILL

1119
00:35:32,364 --> 00:35:33,498
WRAPPING THEIR MINDS AROUND IT.

1120
00:35:33,498 --> 00:35:36,468
AND ALSO THE IMPORTANCE OF

1121
00:35:36,468 --> 00:35:38,336
CAREGIVERS HAVING GOOD SUPPORT

1122
00:35:38,336 --> 00:35:39,738
AND FEELING THAT THEY CAN REACH

1123
00:35:39,738 --> 00:35:40,972
OUT WITHOUT STIGMA BECAUSE IF

1124
00:35:40,972 --> 00:35:45,210
YOU DON'T HAVE HEALTHY

1125
00:35:45,210 --> 00:35:46,111
CAREGIVERS, YOU DON'T HAVE

1126
00:35:46,111 --> 00:35:47,412
HEALTHY INDIVIDUALS.

1127
00:35:47,412 --> 00:35:49,614
AND SO IT'S AN INTERESTING

1128
00:35:49,614 --> 00:35:50,615
SITUATION, AND IF ANYBODY HAS

1129
00:35:50,615 --> 00:35:52,784
ANY QUESTIONS ABOUT IT, IT IS

1130
00:35:52,784 --> 00:35:56,755
OPEN TO OTHERS ACROSS THE

1131
00:35:56,755 --> 00:35:57,589
NATION, THE AMERICAN ALZHEIMER'S

1132
00:35:57,589 --> 00:36:02,427
DISETHE AMERICAN AD COUNCILIS P.

1133
00:36:02,427 --> 00:36:04,062
IT'S GOING TO BE AN IMPORTANT

1134
00:36:04,062 --> 00:36:04,963
MOVEMENT FOR AMERICA IN THE

1135
00:36:04,963 --> 00:36:06,264
WHOLE BUT ALSO FOR OUR

1136
00:36:06,264 --> 00:36:08,233
POPULATION.

1137
00:36:08,233 --> 00:36:09,434
>> THANK YOU.

1138
00:36:09,434 --> 00:36:11,636
I SAW A HAND OVER HERE.

1139
00:36:11,636 --> 00:36:12,537
IVANOVA?

1140
00:36:12,537 --> 00:36:14,806
>> YES.

1141
00:36:14,806 --> 00:36:16,341
I HAVE TWO UPDATES.

1142
00:36:16,341 --> 00:36:17,942
THE FIRST ONE IS FROM THE

1143
00:36:17,942 --> 00:36:21,813
UNIVERSITY OF WASHINGTON LAND.

1144
00:36:21,813 --> 00:36:24,015
THIS FALL, THERE WILL BE THE

1145
00:36:24,015 --> 00:36:29,287
10-YEAR ANNIVERSARY OF THE

1146
00:36:29,287 --> 00:36:29,821
SELF-ADVOCATE DISCIPLINE.

1147
00:36:29,821 --> 00:36:31,823
I STARTED THAT DISCIPLINE AS

1148
00:36:31,823 --> 00:36:33,792
BEING THE FIRST LAND TRAINEE

1149
00:36:33,792 --> 00:36:34,559
BACK IN 2014.

1150
00:36:34,559 --> 00:36:36,728
SO WE'RE GOING TO BE CELEBRATING

1151
00:36:36,728 --> 00:36:38,063
OUR 10-YEAR ANNIVERSARY.

1152
00:36:38,063 --> 00:36:41,132
SO I JUST WANTED TO SHARE THAT.

1153
00:36:41,132 --> 00:36:44,069
AND ALSO IN WASHINGTON, WE MADE

1154
00:36:44,069 --> 00:36:48,173
A BILL CALLED NOTHING ABOUT US

1155
00:36:48,173 --> 00:36:49,574
WITHOUT US SO THAT IT MAKES

1156
00:36:49,574 --> 00:36:50,442
PEOPLE WITH DIRECT LIVED

1157
00:36:50,442 --> 00:36:53,745
EXPERIENCE GET TO HAVE A SAY ON

1158
00:36:53,745 --> 00:36:54,879
WORKFORCES, TASK FORCES AND

1159
00:36:54,879 --> 00:36:56,614
COMMITTEES THAT DIRECTLY IMPACT

1160
00:36:56,614 --> 00:36:57,816
THEM.

1161
00:36:57,816 --> 00:36:59,217
AND SO IT'S CALLED NOTHING ABOUT

1162
00:36:59,217 --> 00:37:00,251
US WITHOUT US.

1163
00:37:00,251 --> 00:37:05,390
I JUST WANTED TO SHARE THAT, AS

1164
00:37:05,390 --> 00:37:07,058
A CELEBRATORY THING.

1165
00:37:07,058 --> 00:37:07,358
THANK YOU.

1166
00:37:07,358 --> 00:37:12,430
>> THANK YOU.

1167
00:37:12,430 --> 00:37:15,166
AND WE'LL GO TO THE WEB HERE, WE

1168
00:37:15,166 --> 00:37:16,734
SEE THAT PAUL WANG HAS HIS HAND

1169
00:37:16,734 --> 00:37:17,836
RAISED AND THEN TOM, YOU'LL BE

1170
00:37:17,836 --> 00:37:18,903
NEXT.

1171
00:37:18,903 --> 00:37:19,370
SO PAUL?

1172
00:37:19,370 --> 00:37:20,572
>> THANK YOU, SUSAN.

1173
00:37:20,572 --> 00:37:22,273
I JUST WANT TO HIGHLIGHT THE

1174
00:37:22,273 --> 00:37:24,042
BULLETS THAT WE HAVE UPDATES

1175
00:37:24,042 --> 00:37:25,143
FROM THE SIMONS FOUNDATION IN

1176
00:37:25,143 --> 00:37:26,010
THE MEETING MATERIALS.

1177
00:37:26,010 --> 00:37:27,779
FIRST OF ALL, WE MAKE AVAILABLE

1178
00:37:27,779 --> 00:37:29,748
QUITE A NUMBER OF RESEARCH

1179
00:37:29,748 --> 00:37:31,816
RESOURCES TO FACILITATE RESEARCH

1180
00:37:31,816 --> 00:37:33,151
RELATED TO AUTISM AND

1181
00:37:33,151 --> 00:37:34,285
INFORMATION FOR THAT CAN BE

1182
00:37:34,285 --> 00:37:39,190
FOUND AT SAFARI.ORG, SFARI.ORG.

1183
00:37:39,190 --> 00:37:41,192
SECONDLY, WE HAVE AN ANNUAL

1184
00:37:41,192 --> 00:37:43,261
GRANTING PROGRAM THAT USED TO BE

1185
00:37:43,261 --> 00:37:44,129
CALLED BRIDGE TO INDEPENDENCE.

1186
00:37:44,129 --> 00:37:45,930
NOW IT'S CALLED FELLOWS TO

1187
00:37:45,930 --> 00:37:46,264
FACULTY.

1188
00:37:46,264 --> 00:37:49,267
IT IS FOR SENIOR POSTDOCTORAL

1189
00:37:49,267 --> 00:37:50,902
RESEARCHERS TO TRANSITION INTO

1190
00:37:50,902 --> 00:37:52,437
THEIR FIRST INDEPENDENT FACULTY

1191
00:37:52,437 --> 00:37:53,338
POSITIONS, AND THIS IS

1192
00:37:53,338 --> 00:37:54,873
SPECIFICALLY TARGETED TO

1193
00:37:54,873 --> 00:37:56,441
CANDIDATES WHO HAVE BACKGROUNDS

1194
00:37:56,441 --> 00:37:57,408
AND EXPERIENCES THAT

1195
00:37:57,408 --> 00:38:01,412
RUNDREPRESENTED IN SCIENCE.

1196
00:38:01,412 --> 00:38:02,380
WHETHER THAT IS A MINORITY

1197
00:38:02,380 --> 00:38:05,350
RACIAL OR ETHNIC GROUP OR

1198
00:38:05,350 --> 00:38:06,684
INDIVIDUALS WHO HAVE AUTISM

1199
00:38:06,684 --> 00:38:08,219
THEMSELVES OR, FOR EXAMPLE,

1200
00:38:08,219 --> 00:38:09,621
MILITARY VETERANS AS WELL.

1201
00:38:09,621 --> 00:38:10,989
FINALLY I JUST WANT TO SHARE

1202
00:38:10,989 --> 00:38:13,825
THAT THE SIMONS FOUNDATION IS

1203
00:38:13,825 --> 00:38:14,792
EXPANDING ITS AUTISM IN THE

1204
00:38:14,792 --> 00:38:16,127
WORKPLACE INITIATIVE, HAVING

1205
00:38:16,127 --> 00:38:17,562
LAUNCHED A GRANT PROGRAM THAT

1206
00:38:17,562 --> 00:38:20,198
GIVES FUNDING TO NON-PROFIT

1207
00:38:20,198 --> 00:38:22,700
EMPLOYERS TO SUPPORT AUTISTIC

1208
00:38:22,700 --> 00:38:23,334
INDIVIDUALS IN THE WORKPLACE.

1209
00:38:23,334 --> 00:38:25,837
THANK YOU.

1210
00:38:25,837 --> 00:38:29,207
>> THANK YOU, PAUL.

1211
00:38:29,207 --> 00:38:30,508
WAS THE AUDIENCE ABLE TO HEAR

1212
00:38:30,508 --> 00:38:31,042
ANY OF THAT?

1213
00:38:31,042 --> 00:38:32,076
I DON'T THINK SO.

1214
00:38:32,076 --> 00:38:33,611
>> ONLINE?

1215
00:38:33,611 --> 00:38:35,380
I HEARD IT ONLINE.

1216
00:38:35,380 --> 00:38:36,681
>> YOU HEARD IT ONLINE?

1217
00:38:36,681 --> 00:38:40,718
>> I DID, YEAH.

1218
00:38:40,718 --> 00:38:41,953
>> I COULD ALSO HEAR IT.

1219
00:38:41,953 --> 00:38:48,092
I HAD TO TURN UP MY VOLUME.

1220
00:38:48,092 --> 00:38:50,962
>> I'M SORRY TO ASK YOU TO

1221
00:38:50,962 --> 00:38:52,797
REPEAT IT AND MAYBE TURN UP YOUR

1222
00:38:52,797 --> 00:38:54,332
VOLUME A LITTLE BIT BECAUSE OUR

1223
00:38:54,332 --> 00:38:55,099
AUDIENCE IN THE ROOM WASN'T ABLE

1224
00:38:55,099 --> 00:38:55,733
TO HEAR.

1225
00:38:55,733 --> 00:38:56,935
I COULD HEAR IT BECAUSE I'M A

1226
00:38:56,935 --> 00:38:58,903
LITTLE CLOSE TO THE SPEAKERS.

1227
00:38:58,903 --> 00:38:59,571
>> RIGHT.

1228
00:38:59,571 --> 00:39:01,873
I'LL TRY TO SPEAK MORE LOUDLY

1229
00:39:01,873 --> 00:39:02,073
ALSO.

1230
00:39:02,073 --> 00:39:03,308
JUST POINTING OUT THE BULLETS

1231
00:39:03,308 --> 00:39:06,477
THAT WE HAVE IN THE ROUND ROBIN

1232
00:39:06,477 --> 00:39:07,579
UPDATES MEETING MATERIAL FROM

1233
00:39:07,579 --> 00:39:08,580
THE SIMONS FOUNDATION.

1234
00:39:08,580 --> 00:39:09,581
FIRST OF ALL THERE ARE A NUMBER

1235
00:39:09,581 --> 00:39:11,316
OF RESEARCH RESOURCES THAT WE

1236
00:39:11,316 --> 00:39:13,218
MAKE AVAILABLE TO RESEARCHERS

1237
00:39:13,218 --> 00:39:14,752
WHETHER THEY ARE FROM ACADEMIA

1238
00:39:14,752 --> 00:39:16,721
OR INDUSTRY OR OTHER SPHERES

1239
00:39:16,721 --> 00:39:19,023
THROUGH AN APPLICATION PROCESS.

1240
00:39:19,023 --> 00:39:21,226
PLEASE SEE SFARI.ORG FOR

1241
00:39:21,226 --> 00:39:22,093
INFORMATION ABOUT THAT.

1242
00:39:22,093 --> 00:39:24,162
SECONDLY, WE HAVE AN AWARD

1243
00:39:24,162 --> 00:39:25,630
PROGRAM WHICH IS NOW CALLED THE

1244
00:39:25,630 --> 00:39:28,600
FELLOWS TO FACULTY AWARD FOR

1245
00:39:28,600 --> 00:39:29,901
SENIOR POSTDOCS WHO ARE

1246
00:39:29,901 --> 00:39:31,669
TRANSITIONING TO AN INDEPENDENT

1247
00:39:31,669 --> 00:39:32,437
FACULTY POSITION.

1248
00:39:32,437 --> 00:39:34,872
THIS IS TARGETED SPECIFICALLY TO

1249
00:39:34,872 --> 00:39:36,341
CANDIDATES WHO HAVE BACKGROUNDS

1250
00:39:36,341 --> 00:39:37,875
AND EXPERIENCES THAT ARE

1251
00:39:37,875 --> 00:39:39,944
UNDERREPRESENTED IN SCIENCE,

1252
00:39:39,944 --> 00:39:42,347
WHETHER THEY ARE FROM A MINORITY

1253
00:39:42,347 --> 00:39:43,881
RACIAL OR ETHNIC GROUP OR THEY

1254
00:39:43,881 --> 00:39:45,383
ARE INDIVIDUALS WITH AUTISM OR,

1255
00:39:45,383 --> 00:39:46,818
FOR EXAMPLE, MILITARY VETERANS

1256
00:39:46,818 --> 00:39:48,720
WHO ARE UNDERREPRESENTED IN

1257
00:39:48,720 --> 00:39:49,387
SCIENCE.

1258
00:39:49,387 --> 00:39:52,156
AND FINALLY, WE AT THE SIMONS

1259
00:39:52,156 --> 00:39:54,459
FOUNDATION HAVE A NEW AUTISM IN

1260
00:39:54,459 --> 00:39:57,295
THE WORKPLACE INITIATIVE GRANT

1261
00:39:57,295 --> 00:39:57,762
PROGRAM.

1262
00:39:57,762 --> 00:39:59,430
THIS IS FOR NON-PROFIT EMPLOYERS

1263
00:39:59,430 --> 00:40:01,366
TO BUILD THE INFRASTRUCTURE AND

1264
00:40:01,366 --> 00:40:03,034
TRAINING THAT ARE NEEDED TO

1265
00:40:03,034 --> 00:40:04,535
SUPPORT AUTISTIC INDIVIDUALS IN

1266
00:40:04,535 --> 00:40:05,003
THEIR WORKPLACE.

1267
00:40:05,003 --> 00:40:06,871
THANK YOU.

1268
00:40:06,871 --> 00:40:08,172
>> THANK YOU SO MUCH.

1269
00:40:08,172 --> 00:40:09,807
AND WE ALSO DO HAVE THE

1270
00:40:09,807 --> 00:40:11,709
INFORMATION IN THE PACKET FOR

1271
00:40:11,709 --> 00:40:12,677
THE ROUND ROBIN, SO IF YOU WANT

1272
00:40:12,677 --> 00:40:14,212
TO JUST READ IT, YOU CAN GO TO

1273
00:40:14,212 --> 00:40:15,780
THE PACKET.

1274
00:40:15,780 --> 00:40:16,748
ALL RIGHT.

1275
00:40:16,748 --> 00:40:17,782
AND THEN TOM FRASIER.

1276
00:40:17,782 --> 00:40:20,151
>> THANKS, SUSAN.

1277
00:40:20,151 --> 00:40:21,586
I WANTED TO JUST MENTION A

1278
00:40:21,586 --> 00:40:23,254
COUPLE OF THINGS RELEVANT TO

1279
00:40:23,254 --> 00:40:25,456
AUTISM SPEAKS WORK, AND

1280
00:40:25,456 --> 00:40:26,557
OBVIOUSLY THERE'S THINGS IN THE

1281
00:40:26,557 --> 00:40:28,393
PACKET, I WON'T REITERATE THOSE,

1282
00:40:28,393 --> 00:40:29,861
BUT PLEASE DO READ THOSE.

1283
00:40:29,861 --> 00:40:31,696
BUT I JUST WANT TO HIGHLIGHT A

1284
00:40:31,696 --> 00:40:33,464
COUPLE OF THINGS FROM AUTISM

1285
00:40:33,464 --> 00:40:35,667
CARES, THE SUPPLEMENT WHAT SUSAN

1286
00:40:35,667 --> 00:40:36,234
SAID EARLIER.

1287
00:40:36,234 --> 00:40:37,535
SO THERE'S LANGUAGE IN THE BILL

1288
00:40:37,535 --> 00:40:39,103
TO CREATE A NEW AUTISM

1289
00:40:39,103 --> 00:40:40,371
INTERVENTION RESEARCH NETWORK

1290
00:40:40,371 --> 00:40:43,975
FOR COMMUNICATION NEEDS.

1291
00:40:43,975 --> 00:40:45,009
THERE'S ALSO LANGUAGE IN THE

1292
00:40:45,009 --> 00:40:46,978
BILL AROUND AGES AS FOCUS FOR

1293
00:40:46,978 --> 00:40:48,413
FUTURE RESEARCH, AND THE

1294
00:40:48,413 --> 00:40:49,414
GOVERNMENT ACCOUNTABILITY

1295
00:40:49,414 --> 00:40:50,782
OFFICE, THERE'S LANGUAGE IN

1296
00:40:50,782 --> 00:40:52,250
THERE TO REQUIRE THEM TO ISSUE A

1297
00:40:52,250 --> 00:40:53,484
STUDY AND REPORT ON INCREASING

1298
00:40:53,484 --> 00:40:56,688
THE NUMBER OF DEVELOPMENTAL AND

1299
00:40:56,688 --> 00:40:58,756
BEHAVIORAL PEDIATRICIANS.

1300
00:40:58,756 --> 00:41:00,825
THE OTHER UPDATES FOR US AROUND

1301
00:41:00,825 --> 00:41:02,126
OUR ADVOCACY EFFORTS FOR THE

1302
00:41:02,126 --> 00:41:03,695
AUTISM FAMILY CAREGIVERS ACT,

1303
00:41:03,695 --> 00:41:04,562
OBVIOUSLY THAT'S RELEVANT TO

1304
00:41:04,562 --> 00:41:07,832
TODAY'S MEETING, THE BIPARTISAN

1305
00:41:07,832 --> 00:41:10,635
LEGISLATION CREATES A NEW PILOT

1306
00:41:10,635 --> 00:41:13,371
PROGRAM AT HRSA TO FUND LOCAL

1307
00:41:13,371 --> 00:41:14,906
CAREGIVER SKILLS TRAINING SITES.

1308
00:41:14,906 --> 00:41:16,240
25 SITE IN 15 STATES.

1309
00:41:16,240 --> 00:41:18,443
AND THE BILL CURRENTLY HAS 34

1310
00:41:18,443 --> 00:41:18,876
CO-SPONSORS.

1311
00:41:18,876 --> 00:41:22,513
BY THE WAY, AUTISM CARES HAS 44

1312
00:41:22,513 --> 00:41:23,481
BIPARTISAN CO-SPONSORS ON THAT

1313
00:41:23,481 --> 00:41:25,483
BILL NOW.

1314
00:41:25,483 --> 00:41:28,653
AND THEN LASTLY FOR ME, THE

1315
00:41:28,653 --> 00:41:31,022
OFFICE OF CAREGIVER HEALTH, SO

1316
00:41:31,022 --> 00:41:32,724
AUTISM SPEAKS JUST RECENTLY

1317
00:41:32,724 --> 00:41:34,859
JOINED A COALITION WITH THE

1318
00:41:34,859 --> 00:41:36,294
ROSALYN CARTER INSTITUTE, AND

1319
00:41:36,294 --> 00:41:37,929
SEVERAL OTHER ORGANIZATIONS,

1320
00:41:37,929 --> 00:41:38,930
MANY OTHER ORGANIZATIONS.

1321
00:41:38,930 --> 00:41:40,565
I THINK IT'S 167 STAKEHOLDERS

1322
00:41:40,565 --> 00:41:46,204
THAT SIGNED THE LETTER THAT

1323
00:41:46,204 --> 00:41:48,573
WOULD CALL FOR CREATION OF A NEW

1324
00:41:48,573 --> 00:41:49,841
OFFICE OF CAREGIVER HEALTH

1325
00:41:49,841 --> 00:41:51,042
WITHIN HHS, AND THE MISSION

1326
00:41:51,042 --> 00:41:53,344
WOULD BE ADVANCING HEALTH AND

1327
00:41:53,344 --> 00:41:54,779
WELL-BEING OF FAMILY CAREGIVERS

1328
00:41:54,779 --> 00:41:55,346
ACROSS THE NATION.

1329
00:41:55,346 --> 00:41:56,981
I DO JUST WANT TO EMPHASIZE, WE

1330
00:41:56,981 --> 00:41:58,449
ARE LOOKING FOR FOLKS THAT WOULD

1331
00:41:58,449 --> 00:42:00,551
BE INTERESTED IN POTENTIALLY

1332
00:42:00,551 --> 00:42:03,388
BEING A SITE FOR AUTISM SPEAKS

1333
00:42:03,388 --> 00:42:04,722
CAREGIVER SKILLS TRAINING,

1334
00:42:04,722 --> 00:42:07,992
PARENT TRAINING AND INFORMATION

1335
00:42:07,992 --> 00:42:09,527
CENTER, AND IF YOU COULD CONTACT

1336
00:42:09,527 --> 00:42:10,561
AUTISM SPEAKS, THE LINK IS IN

1337
00:42:10,561 --> 00:42:12,196
THE UPDATES, THE ROUND ROBIN

1338
00:42:12,196 --> 00:42:12,697
UPDATES.

1339
00:42:12,697 --> 00:42:13,931
OUR MISSING RESOURCE ALSO HAS

1340
00:42:13,931 --> 00:42:16,868
BEEN UPDATED WITH NOW MORE THAN

1341
00:42:16,868 --> 00:42:19,771
13,000 INDIVIDUALS, WITH GENOMIC

1342
00:42:19,771 --> 00:42:21,072
DATA AND LOTS OF CLINICAL DATA

1343
00:42:21,072 --> 00:42:22,940
AS WELL FOR RESEARCHERS, AND

1344
00:42:22,940 --> 00:42:26,144
THEN LASTLY THE WHO UNICEF

1345
00:42:26,144 --> 00:42:28,646
REPORT, THE 2023 GLOBAL REPORT

1346
00:42:28,646 --> 00:42:31,382
ON CHILDREN AND DEVELOPMENTAL

1347
00:42:31,382 --> 00:42:32,950
DISABILITIES HAS BEEN RELEASED

1348
00:42:32,950 --> 00:42:36,721
AND THEY'RE HOLDING A WEBINAR ON

1349
00:42:36,721 --> 00:42:37,288
JULY 30TH, 8:30 TO 10:00 IF

1350
00:42:37,288 --> 00:42:38,222
PEOPLE ARE INTERESTED, THEY'RE

1351
00:42:38,222 --> 00:42:39,657
GOING TO USE THAT WEBINAR TO

1352
00:42:39,657 --> 00:42:40,324
DISSEMINATE THE REPORT.

1353
00:42:40,324 --> 00:42:43,494
THANKS.

1354
00:42:43,494 --> 00:42:44,796
>> THANK YOU SO MUCH.

1355
00:42:44,796 --> 00:42:46,631
ANYONE ELSE WANT TO SHARE FOR

1356
00:42:46,631 --> 00:42:49,534
ROUND ROBIN?

1357
00:42:49,534 --> 00:42:50,735
BRYAN.

1358
00:42:50,735 --> 00:42:52,603
>> YES, THANK YOU.

1359
00:42:52,603 --> 00:42:53,604
SO I'M BRYAN BLOOMER.

1360
00:42:53,604 --> 00:42:55,406
I WORK IN THE OFFICE OF THE

1361
00:42:55,406 --> 00:42:57,775
ADMINISTRATOR IN THE OFFICE OF

1362
00:42:57,775 --> 00:43:01,179
CHILDREN'S HEALTH PROTECTION.

1363
00:43:01,179 --> 00:43:04,482
OUR DIRECTOR OF THE OFFICE OF

1364
00:43:04,482 --> 00:43:07,452
CIVIL RIGHTS HAS UNDERGONE A

1365
00:43:07,452 --> 00:43:08,419
MULTIYEAR INITIATIVE TO CREATE A

1366
00:43:08,419 --> 00:43:09,954
SAFE AND WELCOMING ENVIRONMENT

1367
00:43:09,954 --> 00:43:10,855
FOR PERSONS WITH DISABILITIES.

1368
00:43:10,855 --> 00:43:11,889
AS PART OF THAT EFFORT, HE'S

1369
00:43:11,889 --> 00:43:13,524
BEEN WORKING HARD TO BASELINE

1370
00:43:13,524 --> 00:43:14,826
THE NUMBER OF EMPLOYEES WHO ARE

1371
00:43:14,826 --> 00:43:15,960
CURRENTLY WORKING AT THE AGENCY

1372
00:43:15,960 --> 00:43:17,061
WITH DISABILITIES.

1373
00:43:17,061 --> 00:43:20,031
AS THAT HAS TO BE SELF-REPORTED

1374
00:43:20,031 --> 00:43:22,900
IN OUR MANAGEMENT TRACKING

1375
00:43:22,900 --> 00:43:24,836
SYSTEMS, AND I THINK THE LAST

1376
00:43:24,836 --> 00:43:27,138
TWO YEARS, HE HAS BEEN FAIRLY

1377
00:43:27,138 --> 00:43:29,173
SUCCESSFUL AT THE END OF THIS

1378
00:43:29,173 --> 00:43:31,676
MULTIYEAR EFFORT, AND HAS

1379
00:43:31,676 --> 00:43:33,444
ESTABLISHED WHAT I BELIEVE IS A

1380
00:43:33,444 --> 00:43:38,483
REASONABLE BASELINE AND BOTH

1381
00:43:38,483 --> 00:43:39,917
EMPLOYEE COUNSELING, SUPPORT

1382
00:43:39,917 --> 00:43:41,018
SERVICES, AS WELL AS ONGOING

1383
00:43:41,018 --> 00:43:43,120
TRAINING FOR THE SENIOR

1384
00:43:43,120 --> 00:43:44,288
EXECUTIVE AND POLITICAL

1385
00:43:44,288 --> 00:43:46,190
LEADERSHIP AT THE AGENCY.

1386
00:43:46,190 --> 00:43:48,159
SO I DON'T KNOW IF THAT HAD BEEN

1387
00:43:48,159 --> 00:43:49,393
REPORTED OUT PREVIOUSLY, BUT WE

1388
00:43:49,393 --> 00:43:50,795
HAVE SIGNIFICANT MOVEMENT IN THE

1389
00:43:50,795 --> 00:43:52,029
AGENCY IN MY OPINION, AND I JUST

1390
00:43:52,029 --> 00:43:53,331
WANTED TO MAKE SURE EVERYBODY

1391
00:43:53,331 --> 00:43:58,503
WAS AWARE OF THAT AND CAN SEE

1392
00:43:58,503 --> 00:43:59,971
JUAN CARLOS POTENTIALLY AS A

1393
00:43:59,971 --> 00:44:00,404
RESOURCE.

1394
00:44:00,404 --> 00:44:01,472
HE'S HAPPY TO HELP ANYBODY ELSE

1395
00:44:01,472 --> 00:44:03,808
WHO MAY BE UNDERTAKING A SIMILAR

1396
00:44:03,808 --> 00:44:04,141
INITIATIVE.

1397
00:44:04,141 --> 00:44:05,543
>> THANK YOU FOR THAT
UPDATE,

1398
00:44:05,543 --> 00:44:07,945
BRYAN.

1399
00:44:07,945 --> 00:44:08,746
AND YETTA.

1400
00:44:08,746 --> 00:44:10,081
>> SO ONE MORE THING FROM
ME.

1401
00:44:10,081 --> 00:44:12,016
I THINK MANY OF YOU KNOW I SERVE

1402
00:44:12,016 --> 00:44:15,553
AS THE CDC'S ACTOR-ONLY

1403
00:44:15,553 --> 00:44:17,288
AMBASSADOR TO THE DISTRICT OF

1404
00:44:17,288 --> 00:44:19,123
COLUMBIA I DON'T THINK THIS IS

1405
00:44:19,123 --> 00:44:22,026
IN THE ANNOUNCEMENT ABOUT --

1406
00:44:22,026 --> 00:44:25,096
THAT'S IN THE PACKET, BUT THE

1407
00:44:25,096 --> 00:44:26,230
PROGRAM IS 20 YEARS OLD THIS

1408
00:44:26,230 --> 00:44:27,832
YEAR SO I WANT TO GIVE A SHOUT

1409
00:44:27,832 --> 00:44:28,866
OUT ABOUT THAT.

1410
00:44:28,866 --> 00:44:33,170
ALSO THROUGH MY WOR WORK ESPECIY

1411
00:44:33,170 --> 00:44:35,673
BEING A PARENT OF A NOW ADULT,

1412
00:44:35,673 --> 00:44:36,574
AUTISTIC ADULT, IS THINKING

1413
00:44:36,574 --> 00:44:42,880
ABOUT HOW TO BRIDGE GAPS BETW 

1414
00:44:42,880 --> 00:44:44,215
BETWEEN -- MATERIALS AND AUTISM

1415
00:44:44,215 --> 00:44:45,449
SO HOT OFF THE PRESS, I ACTUALLY

1416
00:44:45,449 --> 00:44:47,351
NEED TO SEND THIS TO THE CDC

1417
00:44:47,351 --> 00:44:49,120
FOLKS, CREATED A DOCUMENT CALLED

1418
00:44:49,120 --> 00:44:51,589
USING THE CDC'S LEARN THE

1419
00:44:51,589 --> 00:44:54,125
SCIENCE ACT EARLY MATERIALS POST

1420
00:44:54,125 --> 00:44:55,359
AUTISM DIAGNOSIS OR EDUCATIONAL

1421
00:44:55,359 --> 00:44:56,694
CLASSIFICATION TO HELP FAMILIES

1422
00:44:56,694 --> 00:44:58,329
THINK ABOUT WHAT THEY CAN --

1423
00:44:58,329 --> 00:44:59,430
WHAT GOALS THEY MIGHT BE

1424
00:44:59,430 --> 00:45:01,098
THINKING ABOUT FOR THEIR CHILD

1425
00:45:01,098 --> 00:45:03,634
USING THE LEARNING SCIENCE ACT

1426
00:45:03,634 --> 00:45:05,570
EARLY MATERIAL.  SO ONE VERY

1427
00:45:05,570 --> 00:45:06,671
QUICK EXAMPLE IS IF A PARENT IS

1428
00:45:06,671 --> 00:45:08,506
INTERESTED IN BUILDING SOCIAL

1429
00:45:08,506 --> 00:45:10,141
AND EMOTIONAL SKILLS, THEY CAN

1430
00:45:10,141 --> 00:45:12,710
TALK TO THEIR PSYCHOLOGIST OR

1431
00:45:12,710 --> 00:45:15,346
SPECIAL EDUCATION TEACHER OR FOR

1432
00:45:15,346 --> 00:45:16,314
OBVIOUSLY LANGUAGE AND

1433
00:45:16,314 --> 00:45:17,214
COMMUNICATION, THEY CAN TALK TO

1434
00:45:17,214 --> 00:45:18,616
THE SPEECH AND LANGUAGE

1435
00:45:18,616 --> 00:45:19,984
PATHOLOGIST, BUT AFTER LOOKING

1436
00:45:19,984 --> 00:45:24,255
AT THE LEARN THE SIGNS MILESTONE

1437
00:45:24,255 --> 00:45:25,957
AND SAY OKAY, MY CHILD MIGHT NOT

1438
00:45:25,957 --> 00:45:27,825
BE DOING THIS RIGHT NOW BUT I

1439
00:45:27,825 --> 00:45:30,528
WANT MY CHILD TO BE ABLE TO --

1440
00:45:30,528 --> 00:45:31,996
SUPPORT THEM IN DOING -- GETTING

1441
00:45:31,996 --> 00:45:33,130
TO THIS MILESTONE AND HAVING

1442
00:45:33,130 --> 00:45:33,564
THAT CONVERSATION.

1443
00:45:33,564 --> 00:45:35,533
SO I THINK IT'S REALLY IMPORTANT

1444
00:45:35,533 --> 00:45:37,902
EARLY ON TO ENSURE THAT FAMILIES

1445
00:45:37,902 --> 00:45:38,970
ARE -- HAVE THE RESOURCES THAT

1446
00:45:38,970 --> 00:45:40,605
THEY NEED TO HAVE THESE

1447
00:45:40,605 --> 00:45:41,405
CONVERSATIONS WITH PROVIDERS.

1448
00:45:41,405 --> 00:45:42,473
SO JUST WANTED TO SHARE THAT

1449
00:45:42,473 --> 00:45:44,642
OUT.

1450
00:45:44,642 --> 00:45:46,043
>> THANK YOU, YETTA.

1451
00:45:46,043 --> 00:45:47,278
AND SCOTT ROBERTSON HAS AN

1452
00:45:47,278 --> 00:45:51,215
UPDATE.

1453
00:45:51,215 --> 00:45:52,316
>> THANKS.

1454
00:45:52,316 --> 00:45:54,719
AND SORRY FOR NOT HAVING

1455
00:45:54,719 --> 00:45:57,254
PROVIDED THIS PREVIOUSLY IN THE

1456
00:45:57,254 --> 00:45:59,323
UPDATED -- THE UPDATE DOCUMENT.

1457
00:45:59,323 --> 00:46:02,660
JUST A FEW SHORT THINGS FROM US

1458
00:46:02,660 --> 00:46:04,729
AT THE DEPARTMENT OF LABOR, AND

1459
00:46:04,729 --> 00:46:06,063
WE HAVE PREVIOUSLY ANNOUNCED THE

1460
00:46:06,063 --> 00:46:09,600
THEME OF ACCESS TO GOOD JOBS FOR

1461
00:46:09,600 --> 00:46:12,370
ALL AS THE THEME FOR NATIONAL

1462
00:46:12,370 --> 00:46:13,537
DISABILITY EMPLOYMENT AWARENESS

1463
00:46:13,537 --> 00:46:15,740
MONTH COMING UP IN OCTOBER.

1464
00:46:15,740 --> 00:46:21,345
WE RECENTLY HAD WEBINARS ON COG

1465
00:46:21,345 --> 00:46:23,347
NISSABILITIES AND NEURODIVERSITY

1466
00:46:23,347 --> 00:46:26,517
AND MENTAL HEALTH FOR THE JOB

1467
00:46:26,517 --> 00:46:27,618
ACCOMMODATION NETWORK, AND OUR

1468
00:46:27,618 --> 00:46:29,253
TECHNICAL ASSISTANCE AND POLICY

1469
00:46:29,253 --> 00:46:30,021
DEVELOPMENT CENTER FOR EMPLOYERS

1470
00:46:30,021 --> 00:46:32,923
ALSO RECENTLY HAD A WEBINAR ON

1471
00:46:32,923 --> 00:46:38,796
THE MENTAL WELL-BEING OF GEN-Z

1472
00:46:38,796 --> 00:46:39,830
WORKERS.

1473
00:46:39,830 --> 00:46:41,832
ADDITIONALLY, WE HAVE RECENTLY

1474
00:46:41,832 --> 00:46:44,235
ANNOUNCED THE AWARDING OF

1475
00:46:44,235 --> 00:46:45,536
COOPERATIVE AGREEMENTS TO HELP

1476
00:46:45,536 --> 00:46:48,873
YOUTH AND YOUNG ADULTS WITH

1477
00:46:48,873 --> 00:46:51,809
DISABILITIES ADDRESS OBSTACLES

1478
00:46:51,809 --> 00:46:54,679
TO EMPLOYMENT, AND THE

1479
00:46:54,679 --> 00:46:55,646
ANNOUNCEMENT EMPHASIZED

1480
00:46:55,646 --> 00:46:57,314
ESPECIALLY THAT $10.5 MILLION

1481
00:46:57,314 --> 00:46:58,683
HAS BEEN AWARDED TO FUND THE

1482
00:46:58,683 --> 00:47:01,585
FIRST YEAR OF THESE FOUR-YEAR,

1483
00:47:01,585 --> 00:47:03,387
FIVE-YEAR COOPERATIVE

1484
00:47:03,387 --> 00:47:04,155
AGREEMENTS, DEVELOPING

1485
00:47:04,155 --> 00:47:06,223
STRATEGIES TO ASSIST YOUTH AND

1486
00:47:06,223 --> 00:47:07,858
YOUNG ADULTS WITH DISABILITIES,

1487
00:47:07,858 --> 00:47:09,994
PARTICULARLY IN UNDERSERVED

1488
00:47:09,994 --> 00:47:12,663
COMMUNITIES IN SUCCESSFULLING

1489
00:47:12,663 --> 00:47:13,531
TRANSITIONING TO THE WORKFORCE.

1490
00:47:13,531 --> 00:47:15,533
THOSE AWARDS HAVE BEEN GRANTED

1491
00:47:15,533 --> 00:47:16,734
TO THE CONNECTICUT DEPARTMENT OF

1492
00:47:16,734 --> 00:47:18,803
LABOR, THE KANSAS DEPARTMENT OF

1493
00:47:18,803 --> 00:47:22,106
COMMERCE, MINNESOTA KPT OF

1494
00:47:22,106 --> 00:47:26,644
ECONDEPARTMENTAND THE NEW YORK F

1495
00:47:26,644 --> 00:47:26,844
LABOR.

1496
00:47:26,844 --> 00:47:27,411
>> THANK YOU, SCOTT.

1497
00:47:27,411 --> 00:47:32,983
ANY OTHER UPDATES?

1498
00:47:32,983 --> 00:47:34,151
I THINK WE ARE COMPLETED WITH

1499
00:47:34,151 --> 00:47:35,553
THE UPDATES.

1500
00:47:35,553 --> 00:47:39,824
SO NEXT WE WILL MOVE ON TO THE

1501
00:47:39,824 --> 00:47:41,225
FIWA PRESENTATIONS, AND WE'LL

1502
00:47:41,225 --> 00:47:45,996
HAVE A BREAK AT 11:35.

1503
00:47:45,996 --> 00:47:47,765
BUT FOR THE FIWA PRESENTATION,

1504
00:47:47,765 --> 00:47:49,433
AT THE JANUARY IACC MEETING, WE

1505
00:47:49,433 --> 00:47:51,102
HAD A SERIES OF PRESENTATIONS BY

1506
00:47:51,102 --> 00:47:52,503
MEMBERS OF THE FIWA.

1507
00:47:52,503 --> 00:47:53,938
THE FEDERAL INTERAGENCY WORK

1508
00:47:53,938 --> 00:47:55,639
GROUP ON AUTISM.

1509
00:47:55,639 --> 00:47:57,608
, TO SHARE UPDATE FROM THEIR

1510
00:47:57,608 --> 00:47:59,577
AGENCIES ABOUT RELEVANT PROGRAMS

1511
00:47:59,577 --> 00:48:01,145
AND INITIATIVES AND ACTIVITIES

1512
00:48:01,145 --> 00:48:02,480
RELATED TO AUTISM AND

1513
00:48:02,480 --> 00:48:05,116
DISABILITIES.

1514
00:48:05,116 --> 00:48:06,517
WE DIDN'T HAVE TIME TO HAVE ALL

1515
00:48:06,517 --> 00:48:08,085
THE FIWA MEMBERS PRESENT AT THE

1516
00:48:08,085 --> 00:48:08,953
JANUARY MEETING, SO WE'RE GOING

1517
00:48:08,953 --> 00:48:13,124
TO HAVE AN ADDITIONAL SET OF

1518
00:48:13,124 --> 00:48:14,859
MEMBERS OF THE FIWA SHARE THEIR

1519
00:48:14,859 --> 00:48:17,228
UPDATE HERE.

1520
00:48:17,228 --> 00:48:18,763
AND TO GIVE YOU BACKGROUND ON

1521
00:48:18,763 --> 00:48:21,165
THE FIWA AGAIN, THE FEDERAL

1522
00:48:21,165 --> 00:48:22,800
INTERAGENCY WORK GROUP ON AUTISM

1523
00:48:22,800 --> 00:48:25,703
IS A GROUP -- AN ALL-FEDERAL

1524
00:48:25,703 --> 00:48:28,439
VOLUNTARY GROUP OF FEDERAL

1525
00:48:28,439 --> 00:48:30,608
OFFICIALS THAT MEETS ON A

1526
00:48:30,608 --> 00:48:32,977
REGULAR BASIS TO WORK ON FEDERAL

1527
00:48:32,977 --> 00:48:35,146
COORDINATION AROUND AUTISM, AND

1528
00:48:35,146 --> 00:48:37,214
I'M THE CHAIR OF THAT COMMITTEE

1529
00:48:37,214 --> 00:48:39,683
AND WE MEET IN BETWEEN IACC

1530
00:48:39,683 --> 00:48:40,985
MEETINGS TO WORK ON

1531
00:48:40,985 --> 00:48:42,520
IMPLEMENTATION OF THE STRATEGIC

1532
00:48:42,520 --> 00:48:44,155
PLAN, AND ALSO TO WORK

1533
00:48:44,155 --> 00:48:45,156
COLLABORATIVELY ON OTHER

1534
00:48:45,156 --> 00:48:46,957
PROJECTS SUCH AS REPORTS TO

1535
00:48:46,957 --> 00:48:48,793
CONGRESS THAT WERE REQUIRED FOR

1536
00:48:48,793 --> 00:48:51,328
US TO COMPLETE AND ANY OTHER

1537
00:48:51,328 --> 00:48:53,964
REQUIREMENTS IN THE CARES ACT.

1538
00:48:53,964 --> 00:48:55,866
SO THAT'S ALWAYS GOING ON IN THE

1539
00:48:55,866 --> 00:48:58,369
BACKGROUND, AND THEY ALSO HEAR

1540
00:48:58,369 --> 00:49:00,037
UPDATES ABOUT THE IACC FROM ME

1541
00:49:00,037 --> 00:49:01,672
AT THOSE MEETINGS AND THE FIWA

1542
00:49:01,672 --> 00:49:02,940
HAS A LITTLE BIT BROADER

1543
00:49:02,940 --> 00:49:04,241
MEMBERSHIP THAN THE IACC, SO

1544
00:49:04,241 --> 00:49:05,876
THERE ARE A FEW AGENCIES AND

1545
00:49:05,876 --> 00:49:07,378
DEPARTMENTS THAT ARE NOT ON THE

1546
00:49:07,378 --> 00:49:09,113
IACC THAT ALSO ATTEND FIWA

1547
00:49:09,113 --> 00:49:10,414
MEETINGS.

1548
00:49:10,414 --> 00:49:12,416
AND IT'S A WONDERFUL GROUP OF

1549
00:49:12,416 --> 00:49:13,818
PEOPLE AND THIS PRESENTATION

1550
00:49:13,818 --> 00:49:16,053
WILL GIVE YOU THE OPPORTUNITY TO

1551
00:49:16,053 --> 00:49:18,222
HEAR FROM SEVERAL OF THOSE

1552
00:49:18,222 --> 00:49:21,859
MEMBERS, AND I'M ALSO PLEASED TO

1553
00:49:21,859 --> 00:49:23,327
SAY THAT WE HAVE NEW MEMBERS TO

1554
00:49:23,327 --> 00:49:25,529
THE FIWA FROM THE HHS OFFICE OF

1555
00:49:25,529 --> 00:49:26,597
THE ASSISTANT SECRETARY OF

1556
00:49:26,597 --> 00:49:30,301
PREPAREDNESS AND RESPONSE OR AS

1557
00:49:30,301 --> 00:49:31,936
ASPR, AND ALSO FROM THE FEDERAL

1558
00:49:31,936 --> 00:49:33,604
EMERGENCY MANAGEMENT AGENCY FROM

1559
00:49:33,604 --> 00:49:34,471
THE DEPARTMENT OF HOMELAND

1560
00:49:34,471 --> 00:49:35,272
SECURITY AND WE'LL BE HEARING

1561
00:49:35,272 --> 00:49:35,940
FROM THEM TODAY.

1562
00:49:35,940 --> 00:49:42,079
SO OUR SPOKERS T SPEAKERS ARE MN

1563
00:49:42,079 --> 00:49:45,916
RAMOS FROM HRSA, DR. NICOLE

1564
00:49:45,916 --> 00:49:48,285
WILLIAMS, FROM THE DEPARTMENT OF

1565
00:49:48,285 --> 00:49:50,921
DEFENSE, BOTH OF WHOM ARE ON THE

1566
00:49:50,921 --> 00:49:51,655
IACC.

1567
00:49:51,655 --> 00:49:53,190
DR. ALLYSON DEAN, ALSO ON THE

1568
00:49:53,190 --> 00:49:54,758
IACC FROM THE ADMINISTRATION FOR

1569
00:49:54,758 --> 00:49:57,394
CHILDREN AND FAMILIES.

1570
00:49:57,394 --> 00:49:59,263
BARBARA ROLAND, IACC MEMBER FROM

1571
00:49:59,263 --> 00:50:00,064
THE INDIAN HEALTH SERVICE AND

1572
00:50:00,064 --> 00:50:00,931
ALSO ON FIWA.

1573
00:50:00,931 --> 00:50:04,001
AND THEN WE'LL BE HEARING FROM

1574
00:50:04,001 --> 00:50:07,471
DR. MAXINE CALMAN FROM ASPR,

1575
00:50:07,471 --> 00:50:08,439
OFFICE OF THE ASSISTANT

1576
00:50:08,439 --> 00:50:09,440
SECRETARY FOR PREPAREDNESS AND

1577
00:50:09,440 --> 00:50:12,209
RESPONSE AND DR. SHERMAN GILLAMS

1578
00:50:12,209 --> 00:50:14,078
JR. FROM THE FEDERAL EMERGENCY

1579
00:50:14,078 --> 00:50:15,079
MANAGEMENT AGENCY.

1580
00:50:15,079 --> 00:50:16,480
SO EACH SPEAKER WILL HAVE FIVE

1581
00:50:16,480 --> 00:50:21,452
MINUTES TO SPEAK, AND I'D ASK

1582
00:50:21,452 --> 00:50:22,653
EACH YOU HAVE PLEASE TO GIVE A

1583
00:50:22,653 --> 00:50:23,420
LITTLE INTRODUCTION TO

1584
00:50:23,420 --> 00:50:24,622
YOURSELVES AS YOU BEGIN YOUR

1585
00:50:24,622 --> 00:50:25,055
PRESENTATIONS.

1586
00:50:25,055 --> 00:50:26,190
AFTER THE LAST SPEAKER, WE'LL

1587
00:50:26,190 --> 00:50:27,558
HAVE SOME TIME FOR THE COMMITTEE

1588
00:50:27,558 --> 00:50:29,393
TO DO SOME Q & A WITH YOU.

1589
00:50:29,393 --> 00:50:30,728
SO WE'LL BEGIN WITH LAUREN

1590
00:50:30,728 --> 00:50:40,838
RAMOS.

1591
00:50:44,742 --> 00:50:45,643
>> GOOD MORNING.

1592
00:50:45,643 --> 00:50:47,177
I'M LAUREN RAMOS FROM THE HEALTH

1593
00:50:47,177 --> 00:50:49,013
RESOURCES AND SERVICES

1594
00:50:49,013 --> 00:50:50,180
ADMINISTRATION OR HRSA AS WE'RE

1595
00:50:50,180 --> 00:50:50,414
KNOWN.

1596
00:50:50,414 --> 00:50:51,815
I'M THE DIRECTOR OF OUR DIVISION

1597
00:50:51,815 --> 00:50:53,250
OF MATERNAL AND CHILD HEALTH

1598
00:50:53,250 --> 00:50:54,585
WORKFORCE DEVELOPMENT AND SERVE

1599
00:50:54,585 --> 00:50:57,688
AS THE LEAD FOR OUR AUTISM

1600
00:50:57,688 --> 00:50:58,188
INVESTMENTS.

1601
00:50:58,188 --> 00:50:59,323
IN CASE YOU'RE NOT FAMILIAR WITH

1602
00:50:59,323 --> 00:51:01,525
HRSA, HRSA PROVIDES EQUITABLE

1603
00:51:01,525 --> 00:51:03,060
HEALTHCARE FOR THE NATION'S

1604
00:51:03,060 --> 00:51:07,564
HIGHEST NEED COMMUNITIES.

1605
00:51:07,564 --> 00:51:08,799
OUR AUTISM INVESTMENTS FOCUS ON

1606
00:51:08,799 --> 00:51:11,168
THREE AREAS.

1607
00:51:11,168 --> 00:51:12,503
TRAINING, HEALTHCARE AND OTHER

1608
00:51:12,503 --> 00:51:14,038
PROFESSIONALS TO SCREEN, REFER,

1609
00:51:14,038 --> 00:51:15,873
AND PROVIDE SERVICES FOR

1610
00:51:15,873 --> 00:51:16,674
CHILDREN AND YOUTH WITH AUTISM

1611
00:51:16,674 --> 00:51:18,709
OR OTHER DEVELOPMENTAL

1612
00:51:18,709 --> 00:51:19,176
DISABILITIES.

1613
00:51:19,176 --> 00:51:21,111
WE ALSO PROMOTE EVIDENCE-BASED

1614
00:51:21,111 --> 00:51:22,313
INTERVENTIONS THROUGH OUR

1615
00:51:22,313 --> 00:51:23,080
RESEARCH PROGRAM.

1616
00:51:23,080 --> 00:51:24,982
AND LASTLY ENSURE THE

1617
00:51:24,982 --> 00:51:28,385
IMPLEMENTATION OF BEST PRACTICES

1618
00:51:28,385 --> 00:51:34,391
FOCUSED ON TRANSITION FOR YOUTH.

1619
00:51:34,391 --> 00:51:35,526
I'LL BRIEFLY GO THROUGH EACH OF

1620
00:51:35,526 --> 00:51:36,760
THOSE AREAS STARTING WITH OUR

1621
00:51:36,760 --> 00:51:37,528
TRAINING PROGRAMS.

1622
00:51:37,528 --> 00:51:38,762
HRSA SUPPORTS TWO TRAINING

1623
00:51:38,762 --> 00:51:39,330
PROGRAMS.

1624
00:51:39,330 --> 00:51:40,764
THE FIRST IS THE LEADER SHEP

1625
00:51:40,764 --> 00:51:42,499
EDUCATION AND DEVELOPMENTAL AND

1626
00:51:42,499 --> 00:51:44,468
OTHER RELATED DISABILITIES OR

1627
00:51:44,468 --> 00:51:45,703
LEND PROGRAM, WHICH IS MUCH

1628
00:51:45,703 --> 00:51:49,340
EASIER TO SAY.

1629
00:51:49,340 --> 00:51:50,841
THE LEND PROGRAM PROVIDES

1630
00:51:50,841 --> 00:51:52,509
INTERDISCIPLINARY TRAINING FOR

1631
00:51:52,509 --> 00:51:53,444
HEALTHCARE AND OTHER PROVIDERS

1632
00:51:53,444 --> 00:51:54,745
AND PROFESSIONALS THAT ADDRESS

1633
00:51:54,745 --> 00:51:57,314
NEEDS OF CHILDREN AND YOUTH WITH

1634
00:51:57,314 --> 00:51:57,815
AUTISM, DEVELOPMENTAL

1635
00:51:57,815 --> 00:51:58,515
DISABILITIES AND REALLY PROMOTE

1636
00:51:58,515 --> 00:52:00,250
THE HEALTH OF THOSE WITH

1637
00:52:00,250 --> 00:52:00,684
DISABILITIES.

1638
00:52:00,684 --> 00:52:03,053
THERE ARE 60 LEND PROGRAMS

1639
00:52:03,053 --> 00:52:04,688
ACROSS THE COUNTRY SO WE HAVE A

1640
00:52:04,688 --> 00:52:06,323
NATIONAL REACH ON THE MAP ON THE

1641
00:52:06,323 --> 00:52:07,324
SLIDE, YOU CAN SEE THOSE STATES

1642
00:52:07,324 --> 00:52:09,760
THAT ARE IN THE DARKER BLUE HAVE

1643
00:52:09,760 --> 00:52:10,961
AT LEAST ONE LEND PROGRAM.

1644
00:52:10,961 --> 00:52:12,363
THOSE IN LIGHT BLUE HAVE A

1645
00:52:12,363 --> 00:52:13,597
PARTNERSHIP WITH AN EXISTING

1646
00:52:13,597 --> 00:52:15,299
LEND PROGRAM, AND I JUST WANT TO

1647
00:52:15,299 --> 00:52:16,934
ACKNOWLEDGE THAT WE HAVE SEVERAL

1648
00:52:16,934 --> 00:52:19,269
IACC MEMBERS THAT ARE CONNECTED

1649
00:52:19,269 --> 00:52:20,437
TO LENDS.

1650
00:52:20,437 --> 00:52:21,905
YOU ALREADY HEARD THAT TODAY.

1651
00:52:21,905 --> 00:52:23,107
WE HAVE PROJECT DIRECTORS,

1652
00:52:23,107 --> 00:52:24,875
FACULTY AND FORMER TRAINEES.

1653
00:52:24,875 --> 00:52:27,745
WE THANK YOU AND ACKNOWLEDGE Y 

1654
00:52:27,745 --> 00:52:28,112
YOU.

1655
00:52:28,112 --> 00:52:29,647
THE LEND PROGRAMS PROVIDE A

1656
00:52:29,647 --> 00:52:30,414
FELLOWSHIP PROGRAM FOR THOSE

1657
00:52:30,414 --> 00:52:31,915
REALLY INTERESTED IN AUTISM AND

1658
00:52:31,915 --> 00:52:33,083
THE HEALTH OF PEOPLE WITH

1659
00:52:33,083 --> 00:52:33,517
DISABILITIES.

1660
00:52:33,517 --> 00:52:35,152
SO PEOPLE GO TO THE LEND PROGRAM

1661
00:52:35,152 --> 00:52:36,587
FROM THEIR GRADUATE OR

1662
00:52:36,587 --> 00:52:37,588
POSTGRADUATE TRAINING PROGRAM

1663
00:52:37,588 --> 00:52:40,424
AND GET REALLY INTENSIVE

1664
00:52:40,424 --> 00:52:41,325
ACADEMIC, CLINICAL AND

1665
00:52:41,325 --> 00:52:43,994
LEADERSHIP AND COMMUNITY-BASED

1666
00:52:43,994 --> 00:52:44,695
OPPORTUNITIES TO REALLY

1667
00:52:44,695 --> 00:52:45,662
UNDERSTAND WHAT IT'S LIKE TO

1668
00:52:45,662 --> 00:52:48,265
HAVE A DISABILITY AND THEN TO BE

1669
00:52:48,265 --> 00:52:49,900
ABLE TO SCREEN, REFER AND

1670
00:52:49,900 --> 00:52:51,568
PROVIDE SERVICES AS APPROPRIATE

1671
00:52:51,568 --> 00:52:52,903
TO THOSE WITH AUTISM AND

1672
00:52:52,903 --> 00:52:53,537
DEVELOPMENTAL DISABILITIES.

1673
00:52:53,537 --> 00:52:57,474
THE HALLMARK OF LEND IS ITS

1674
00:52:57,474 --> 00:52:58,776
INTERDISCIPLINARY NATURE.

1675
00:52:58,776 --> 00:53:01,011
WE REACH OVER 25 DISCIPLINES,

1676
00:53:01,011 --> 00:53:02,713
THOSE INCLUDE MEDICINE, NURSING,

1677
00:53:02,713 --> 00:53:03,447
PSYCHOLOGY, SOCIAL WORK,

1678
00:53:03,447 --> 00:53:05,282
PHYSICAL THERAPY, AUDIOLOGY,

1679
00:53:05,282 --> 00:53:06,583
OCCUPATIONAL THERAPY AND MORE.

1680
00:53:06,583 --> 00:53:07,718
AND A REALLY IMPORTANT AND

1681
00:53:07,718 --> 00:53:09,720
UNIQUE FEATURE OF LEND WAS THAT

1682
00:53:09,720 --> 00:53:11,688
WE INCLUDE IN MEANINGFUL WAYS

1683
00:53:11,688 --> 00:53:13,223
FAMILIES OF PEOPLE WITH

1684
00:53:13,223 --> 00:53:14,491
DISABILITIES AND SELF-ADVOCATES

1685
00:53:14,491 --> 00:53:18,328
IN OUR PROGRAM.

1686
00:53:18,328 --> 00:53:19,730
EACH YEAR LEND PROGRAMS REACH

1687
00:53:19,730 --> 00:53:22,032
ABOUT 18,000 TRAINEES AND OVER

1688
00:53:22,032 --> 00:53:22,966
380,000 WITH CONTINUING

1689
00:53:22,966 --> 00:53:29,640
EDUCATION.

1690
00:53:29,640 --> 00:53:31,075
OUR SECOND TRAINING PROGRAM IS

1691
00:53:31,075 --> 00:53:32,142
THE DEVELOPMENTAL BEHAVIORAL

1692
00:53:32,142 --> 00:53:34,511
PEDIATRICS PROGRAM OR DBP.

1693
00:53:34,511 --> 00:53:35,579
DBP PROGRAMS REALLY WORK TO

1694
00:53:35,579 --> 00:53:36,814
INCREASE ACCESS TO EVALUATION

1695
00:53:36,814 --> 00:53:38,949
AND SERVICES FOR CHILDREN WITH

1696
00:53:38,949 --> 00:53:40,150
DEVELOPMENTAL AND BEHAVIORAL

1697
00:53:40,150 --> 00:53:41,018
CONCERNS.

1698
00:53:41,018 --> 00:53:42,986
WE SUPPORT 13 PROGRAMS AND EACH

1699
00:53:42,986 --> 00:53:45,989
OF THOSE PROGRAMS SUPPORT THE

1700
00:53:45,989 --> 00:53:47,091
THREE-YEAR FELLOWSHIP FOR

1701
00:53:47,091 --> 00:53:47,858
PEDIATRICIANS THAT ARE

1702
00:53:47,858 --> 00:53:49,626
INTERESTED IN SPECIALIZING IN

1703
00:53:49,626 --> 00:53:49,960
DBP.

1704
00:53:49,960 --> 00:53:51,862
THEY ALSO PROVIDE SIGNIFICANT

1705
00:53:51,862 --> 00:53:53,197
TRAINING AND CONTINUING

1706
00:53:53,197 --> 00:53:54,498
EDUCATION TO OTHER PROVIDERS TO

1707
00:53:54,498 --> 00:53:56,900
GIVE THEM SOME GROUNDING IN DBP

1708
00:53:56,900 --> 00:53:57,501
ISSUES.

1709
00:53:57,501 --> 00:53:59,903
IN OUR LAST COMPETITION, WE

1710
00:53:59,903 --> 00:54:01,004
EXPANDED THE PROGRAM TO INCLUDE

1711
00:54:01,004 --> 00:54:02,973
A BROADER FOCUS ON SOME

1712
00:54:02,973 --> 00:54:04,475
INTENSIVE TRAINING FOR

1713
00:54:04,475 --> 00:54:06,743
PEDIATRICIANS IN DBP ISSUES,

1714
00:54:06,743 --> 00:54:09,513
REALLY THINKING ABOUT ACCESS TO

1715
00:54:09,513 --> 00:54:10,747
DIAGNOSTIC SERVICES, DECREASING

1716
00:54:10,747 --> 00:54:12,749
WAIT LISTS AND REALLY THINKING

1717
00:54:12,749 --> 00:54:13,951
ABOUT SPREADING DBP KNOWLEDGE.

1718
00:54:13,951 --> 00:54:16,186
THOSE PROGRAMS REACH OVER 1900

1719
00:54:16,186 --> 00:54:19,123
TRAINEES EACH YEAR AND ANOTHER

1720
00:54:19,123 --> 00:54:19,756
38,000 PRACTICING PROFESSIONALS

1721
00:54:19,756 --> 00:54:22,359
THROUGH CONTINUING EDUCATION.

1722
00:54:22,359 --> 00:54:24,661
HRSA ALSO SUPPORTS AN

1723
00:54:24,661 --> 00:54:25,429
INTERDISCIPLINARY TECHNICAL

1724
00:54:25,429 --> 00:54:26,964
ASSISTANCE CENTER THAT IS HOUSED

1725
00:54:26,964 --> 00:54:28,565
AT THE ASSOCIATION OF UNIVERSITY

1726
00:54:28,565 --> 00:54:30,634
CENTERS ON DISABILITIES THAT

1727
00:54:30,634 --> 00:54:32,836
SUPPORT THE LEND AND DBP

1728
00:54:32,836 --> 00:54:35,172
NETWORKS.

1729
00:54:35,172 --> 00:54:36,273
I'M GOING TO SHIFT AND TALK A

1730
00:54:36,273 --> 00:54:37,741
LITTLE ABOUT OUR AUTISM RESEARCH

1731
00:54:37,741 --> 00:54:38,475
PORTFOLIO NOW.

1732
00:54:38,475 --> 00:54:41,345
WE SUPPORT RESEARCH IN THREE

1733
00:54:41,345 --> 00:54:42,346
TYPES OF PROGRAMS.

1734
00:54:42,346 --> 00:54:44,748
THE AUTISM RESEARCH NETWORKS,

1735
00:54:44,748 --> 00:54:45,949
AUTISM SINGLE INVESTIGATOR

1736
00:54:45,949 --> 00:54:47,551
INNOVATION PROGRAMS, AND

1737
00:54:47,551 --> 00:54:49,853
INVESTIGATOR INITIATED PROGRAMS.

1738
00:54:49,853 --> 00:54:51,155
YOU CAN SEE KIND OF WHAT THAT

1739
00:54:51,155 --> 00:54:53,223
LOOKS LIKE ON THIS SLIDE.

1740
00:54:53,223 --> 00:54:54,391
BUT ESSENTIALLY WE HAVE FOUR

1741
00:54:54,391 --> 00:54:56,426
AUTISM RESEARCH NETWORKS, ONE

1742
00:54:56,426 --> 00:54:57,694
FOCUSED ON PHYSICAL HEALTH

1743
00:54:57,694 --> 00:55:00,697
ASPECTS OF AUTISM, ONE ON

1744
00:55:00,697 --> 00:55:01,231
BEHAVIORAL HEALTH, ONE ON

1745
00:55:01,231 --> 00:55:02,232
HEALTHY WEIGHT FOR CHILDREN AND

1746
00:55:02,232 --> 00:55:03,433
YOUTH WITH AUTISM AND

1747
00:55:03,433 --> 00:55:04,334
DEVELOPMENTAL DISABILITIES, AND

1748
00:55:04,334 --> 00:55:06,670
ONE ON DBP ISSUES.

1749
00:55:06,670 --> 00:55:10,040
THE RESEARCH NETWORKS PROVIDE A

1750
00:55:10,040 --> 00:55:10,941
MULTICENTER SCIENTIFIC

1751
00:55:10,941 --> 00:55:12,209
COLLABORATION FOR RESEARCH INTO

1752
00:55:12,209 --> 00:55:14,611
THAT TOPIC AREA AS WELL AS

1753
00:55:14,611 --> 00:55:15,913
DEVELOPMENT AND DISSEMINATION OF

1754
00:55:15,913 --> 00:55:17,981
GUIDELINES.

1755
00:55:17,981 --> 00:55:19,483
THE SINGLE INVESTIGATOR

1756
00:55:19,483 --> 00:55:20,951
INNOVATION PROGRAMS, OF WHICH WE

1757
00:55:20,951 --> 00:55:22,886
HAVE TWO, FOCUS ON MORE EMERGING

1758
00:55:22,886 --> 00:55:25,989
OR UNDERSTUDIED ISSUES.

1759
00:55:25,989 --> 00:55:28,859
WE SUPPORT ONE, A LONGITUDAL

1760
00:55:28,859 --> 00:55:29,893
DATA ANALYSIS KIND OF LOOKING AT

1761
00:55:29,893 --> 00:55:31,762
THE EARLY ORIGINS OF AUTISM AND

1762
00:55:31,762 --> 00:55:32,996
LIFE COURSE ASPECTS OF AUTISM

1763
00:55:32,996 --> 00:55:34,731
AND A SECOND THAT'S FOCUSED ON

1764
00:55:34,731 --> 00:55:35,365
TRANSITION.

1765
00:55:35,365 --> 00:55:37,034
AND LASTLY, OUR SMALLEST PIECE

1766
00:55:37,034 --> 00:55:39,403
OF OUR RESEARCH PORTFOLIO IS THE

1767
00:55:39,403 --> 00:55:41,905
INVESTIGATOR INITIATED PROGRAMS.

1768
00:55:41,905 --> 00:55:43,941
THOSE ALLOW INDIVIDUALS TO

1769
00:55:43,941 --> 00:55:45,709
SUBMIT APPLICATIONS TO STUDY

1770
00:55:45,709 --> 00:55:47,678
SOMETHING TO REPLICATE AN

1771
00:55:47,678 --> 00:55:49,313
INTERVENTION OR A SERVICE TO

1772
00:55:49,313 --> 00:55:50,914
TEST SOMETHING WITH AN

1773
00:55:50,914 --> 00:55:52,449
UNDERSERVED POPULATION, OR TO DO

1774
00:55:52,449 --> 00:55:54,518
SOME SECONDARY DATA ANALYSIS.

1775
00:55:54,518 --> 00:55:56,753
ALL OF OUR RESEARCH WORK ALIGNS

1776
00:55:56,753 --> 00:55:58,388
TO THE IACC STRATEGIC PLAN AND

1777
00:55:58,388 --> 00:55:59,957
WE REALLY TRY TO WORK TO ADVANCE

1778
00:55:59,957 --> 00:56:04,628
THE PLAN AS WELL.

1779
00:56:04,628 --> 00:56:05,829
OUR NEXT AREA IS WHAT WE CALL

1780
00:56:05,829 --> 00:56:06,797
THE BEST PRACTICES PROGRAM.

1781
00:56:06,797 --> 00:56:09,366
WE HAVE RECENTLY REDESIGNED AND

1782
00:56:09,366 --> 00:56:10,367
COMPETED THAT PROGRAM THIS YEAR

1783
00:56:10,367 --> 00:56:12,002
TO HAVE A SPECIFIC FOCUS ON

1784
00:56:12,002 --> 00:56:16,740
TRANSITION FOR YOUTH WITH AUTISM

1785
00:56:16,740 --> 00:56:17,574
AND/OR EPILEPSY.

1786
00:56:17,574 --> 00:56:18,308
WE'RE REALLY THINKING ABOUT

1787
00:56:18,308 --> 00:56:19,409
THOSE YOUTH WITH THE HIGHEST

1788
00:56:19,409 --> 00:56:20,510
SUPPORT NEEDS AND SO THESE ARE

1789
00:56:20,510 --> 00:56:24,615
NEW PROGRAMS THAT WILL SUPPORT

1790
00:56:24,615 --> 00:56:26,483
STATES OR OTHER APPLICANTS TO BE

1791
00:56:26,483 --> 00:56:28,452
ABLE TO DEVELOP FRAMEWORKS TO

1792
00:56:28,452 --> 00:56:30,587
REALLY THINK ABOUT WHAT A

1793
00:56:30,587 --> 00:56:32,856
SUCCESSFUL TRANSITION FROM CHILD

1794
00:56:32,856 --> 00:56:34,191
TO ADULT SERVING SYSTEMS.

1795
00:56:34,191 --> 00:56:35,392
SO THINKING ABOUT THE RANGE OF

1796
00:56:35,392 --> 00:56:38,195
TRANSITION SERVICES, HEALTHCARE,

1797
00:56:38,195 --> 00:56:39,263
EMPLOYMENT, EDUCATION, ALL OF

1798
00:56:39,263 --> 00:56:40,497
THE THINGS THAT WE NEED FOR

1799
00:56:40,497 --> 00:56:44,167
QUALITY OF LIFE FOR YOUTH, AND A

1800
00:56:44,167 --> 00:56:45,102
SIGNIFICANT FOCUS ON FAMILY

1801
00:56:45,102 --> 00:56:46,737
SUPPORT AND CAREGIVING SUPPORT.

1802
00:56:46,737 --> 00:56:48,672
THIS PROGRAM WILL ALSO SUPPORT A

1803
00:56:48,672 --> 00:56:50,307
NATIONAL TA CENTER TO REALLY BE

1804
00:56:50,307 --> 00:56:51,708
ABLE TO REPLICATE AND SPREAD

1805
00:56:51,708 --> 00:56:53,143
THOSE BEST PRACTICES.

1806
00:56:53,143 --> 00:56:54,611
WE'LL BE AWARDING THAT FIRST

1807
00:56:54,611 --> 00:56:55,812
ROUND OF GRANTS IN THE COMING

1808
00:56:55,812 --> 00:56:57,681
WEEKS, SO STAY TUNED FOR MORE

1809
00:56:57,681 --> 00:57:00,651
INFORMATION THERE.

1810
00:57:00,651 --> 00:57:02,252
BEFORE I CLOSE, I JUST WANTED TO

1811
00:57:02,252 --> 00:57:03,987
HIGHLIGHT THE SUPPORTING ACCESS

1812
00:57:03,987 --> 00:57:07,824
FOR EVERYONE OR SAFE INITIATIVE.

1813
00:57:07,824 --> 00:57:08,558
HRSA SUPPORTED THIS INITIATIVE

1814
00:57:08,558 --> 00:57:10,627
THROUGH THE LEADERSHIP OF OUR

1815
00:57:10,627 --> 00:57:11,194
DEVELOPMENTAL BEHAVIORAL

1816
00:57:11,194 --> 00:57:13,497
PEDIATRICS RESEARCH NETWORK TO

1817
00:57:13,497 --> 00:57:16,933
DEVELOP A CONSENSUS STATEMENT

1818
00:57:16,933 --> 00:57:18,568
THAT WAS REALLY DRIVEN BY PUBLIC

1819
00:57:18,568 --> 00:57:22,072
INPUT AND A RANGE OF HEALTH

1820
00:57:22,072 --> 00:57:23,106
PROFESSIONALS, INDIVIDUALS, AND

1821
00:57:23,106 --> 00:57:24,441
SELF-ADVOCATES TO THINK ABOUT

1822
00:57:24,441 --> 00:57:25,942
WHAT IS A STANDARD OF PRACTICE

1823
00:57:25,942 --> 00:57:27,911
FOR HEALTHCARE TO SUPPORT YOUTH

1824
00:57:27,911 --> 00:57:28,412
WITH NEURODEVELOPMENTAL

1825
00:57:28,412 --> 00:57:29,313
DISABILITIES.

1826
00:57:29,313 --> 00:57:31,281
IT WAS RECENTLY PUBLISHED IN

1827
00:57:31,281 --> 00:57:34,985
PEDIATRICS, AND IF YOU GO TO THE

1828
00:57:34,985 --> 00:57:38,689
SAFEDBP.ORG WEBSITE, YOU CAN

1829
00:57:38,689 --> 00:57:40,724
ACCESS THE CONSENSUS STATEMENT,

1830
00:57:40,724 --> 00:57:42,392
A PLAIN LANGUAGE SUMMARY AND AN

1831
00:57:42,392 --> 00:57:43,126
EXECUTIVE SUMMARY.

1832
00:57:43,126 --> 00:57:45,796
WE ASK FOR YOUR HELP AND PROMOTE

1833
00:57:45,796 --> 00:57:46,863
IN SETTINGS THAT ARE APPROPRIATE

1834
00:57:46,863 --> 00:57:48,332
FOR YOU TO REALLY SPREAD

1835
00:57:48,332 --> 00:57:49,866
EQUITABLE CARE AND ACCESS FOR

1836
00:57:49,866 --> 00:57:52,035
HEALTHCARE FOR YOUTH WITH

1837
00:57:52,035 --> 00:57:52,769
NEURODEVELOPMENTAL DISABILITIES,

1838
00:57:52,769 --> 00:57:53,904
AND YETTA WAS ALSO PART OF THAT

1839
00:57:53,904 --> 00:57:54,671
PANEL AS WELL.

1840
00:57:54,671 --> 00:57:56,807
YOU CAN FOLLOW HRSA ON SOCIAL

1841
00:57:56,807 --> 00:57:58,675
MEDIA, YOU CAN GO TO OUR

1842
00:57:58,675 --> 00:57:59,876
WEBSITE, FIND OUT MORE ABOUT OUR

1843
00:57:59,876 --> 00:58:02,012
AUTISM PROGRAMS, AND I'M HAPPY

1844
00:58:02,012 --> 00:58:03,180
TO SERVE AS A RESOURCE FOR YOU

1845
00:58:03,180 --> 00:58:03,480
AT ANY TIME.

1846
00:58:03,480 --> 00:58:07,317
THANK YOU.

1847
00:58:07,317 --> 00:58:08,485
>> THANK YOU SO MUCH FOR
THAT

1848
00:58:08,485 --> 00:58:09,553
UPDATE.

1849
00:58:09,553 --> 00:58:13,256
NECK WE'LL NEXT WE'LL HEAR FROME

1850
00:58:13,256 --> 00:58:13,523
WILLIAMS.

1851
00:58:13,523 --> 00:58:15,759
>> HI, EVERYBODY.

1852
00:58:15,759 --> 00:58:16,226
NICOLE WILLIAMS.

1853
00:58:16,226 --> 00:58:19,529
I AM THE PROGRAM MANAGER FOR THE

1854
00:58:19,529 --> 00:58:22,099
DEPARTMENT OF DEFENSE'S AUTISM

1855
00:58:22,099 --> 00:58:23,600
RESEARCH PROGRAM WITHIN THE

1856
00:58:23,600 --> 00:58:24,701
CONGRESSIONALLY DIRECTED MEDICAL

1857
00:58:24,701 --> 00:58:28,739
RESEARCH PROGRAMS OR CDMRP.

1858
00:58:28,739 --> 00:58:30,440
BEING IN THE DOD, WE LOVE OUR

1859
00:58:30,440 --> 00:58:32,409
ACRONYMS AND VERY LENGTHY TERMS.

1860
00:58:32,409 --> 00:58:33,610
FOR THOSE OF YOU WHO ARE NOT

1861
00:58:33,610 --> 00:58:36,646
FAMILIAR WITH THE CDMRP, WE'RE A

1862
00:58:36,646 --> 00:58:37,948
FUNDING ORGANIZATION.

1863
00:58:37,948 --> 00:58:42,119
CURRENTLY WE'RE OVER A

1864
00:58:42,119 --> 00:58:44,354
$1 BILLION ENTERPRISE FOR 2024,

1865
00:58:44,354 --> 00:58:46,189
WHICH INCLUDES FUNDING 35

1866
00:58:46,189 --> 00:58:47,958
DIFFERENT DISEASES AND

1867
00:58:47,958 --> 00:58:52,763
DISORDERS, EVERYTHING FROM BR 

1868
00:58:52,763 --> 00:58:56,466
BREAST CANCER, PROSTATE CANCER,

1869
00:58:56,466 --> 00:58:57,901
OBVIOUSLY AUTISM RESEARCH,

1870
00:58:57,901 --> 00:59:00,137
EPILEPSY AND DISORDERS

1871
00:59:00,137 --> 00:59:04,508
EVERYTHING FROM -- MORE MILITARY

1872
00:59:04,508 --> 00:59:06,810
FOCUS, SPINAL CORD INJURY, AND

1873
00:59:06,810 --> 00:59:08,612
ALZHEIMER'S, TBI, THINGS OF THAT

1874
00:59:08,612 --> 00:59:08,845
SORT.

1875
00:59:08,845 --> 00:59:09,946
SO I JUST HAVE A COUPLE OF

1876
00:59:09,946 --> 00:59:10,280
SLIDES.

1877
00:59:10,280 --> 00:59:14,151
I'M GOING TO GIVE AN OVERVIEW,

1878
00:59:14,151 --> 00:59:15,519
HOW WE STARTED AND WHERE WE ARE

1879
00:59:15,519 --> 00:59:18,855
AND THEN AN UPDATE ON OUR FY 24

1880
00:59:18,855 --> 00:59:19,322
PROGRAM.

1881
00:59:19,322 --> 00:59:21,591
SO THE ARP'S VISION IS TO

1882
00:59:21,591 --> 00:59:23,827
IMPROVE THE LIVES OF INDIVIDUALS

1883
00:59:23,827 --> 00:59:26,630
WITH ASD NOW AND IN THEIR

1884
00:59:26,630 --> 00:59:27,497
FUTURE, AND TOWARDS THAT, OUR

1885
00:59:27,497 --> 00:59:29,533
MISSION IS TO PROMOTE INNOVATIVE

1886
00:59:29,533 --> 00:59:31,067
RESEARCH THAT ADVANCES THE

1887
00:59:31,067 --> 00:59:32,969
UNDERSTANDING OF ASD, AND LEADS

1888
00:59:32,969 --> 00:59:35,205
TO IMPROVED OUTCOMES FOR SERVICE

1889
00:59:35,205 --> 00:59:37,007
MEMBERS, THEIR FAMILIES AND THE

1890
00:59:37,007 --> 00:59:38,175
AMERICAN PUBLIC.

1891
00:59:38,175 --> 00:59:40,076
YOU CAN SEE HERE FROM THE CHART

1892
00:59:40,076 --> 00:59:42,512
AT THE BOTTOM THAT THE PROGRAM

1893
00:59:42,512 --> 00:59:45,015
FIRST STARTED IN 2007 WITH A

1894
00:59:45,015 --> 00:59:47,050
7 1/2 MILLION DOLLARS

1895
00:59:47,050 --> 00:59:48,585
APPROPRIATION, AND WE HAVE

1896
00:59:48,585 --> 00:59:49,586
CONTINUALLY RECEIVED FUNDING

1897
00:59:49,586 --> 00:59:51,455
SINCE THAT POINT.

1898
00:59:51,455 --> 00:59:53,156
THE ONE THING THAT WILL JUMP OUT

1899
00:59:53,156 --> 00:59:55,659
AT YOU IS THAT IN FY 20, WE

1900
00:59:55,659 --> 00:59:58,395
ACTUALLY SAW A DOUBLING OF OUR

1901
00:59:58,395 --> 01:00:00,764
APPROPRIATION TO $15 MILLION,

1902
01:00:00,764 --> 01:00:01,665
AND THAT'S WHERE WE'VE BEEN FOR

1903
01:00:01,665 --> 01:00:02,999
THE PAST FIVE CYCLES.

1904
01:00:02,999 --> 01:00:06,002
SO IN TOTAL, THE PROGRAM HAS

1905
01:00:06,002 --> 01:00:07,571
RECEIVED JUST UNDER

1906
01:00:07,571 --> 01:00:09,306
$165 MILLION, WHICH IS

1907
01:00:09,306 --> 01:00:11,174
TRANSLATED TO 220 AWARDS AND I'M

1908
01:00:11,174 --> 01:00:15,111
HAPPY TO SAY THAT ALL OF OUR FY

1909
01:00:15,111 --> 01:00:18,682
23 PROJECTS HAVE BEEN FUNDED.

1910
01:00:18,682 --> 01:00:20,650
15 OF THOSE ARE ON OUR WEBSITE

1911
01:00:20,650 --> 01:00:22,252
THAT YOU CAN SEE HERE AT THE

1912
01:00:22,252 --> 01:00:24,554
BOTTOM WITH THE QR CODE.

1913
01:00:24,554 --> 01:00:29,025
THE ABSTRACTS ARE THERE, FUNDING

1914
01:00:29,025 --> 01:00:30,660
INFORMATION, AS WELL AS THE

1915
01:00:30,660 --> 01:00:32,062
INVESTIGATORS AND THEIR

1916
01:00:32,062 --> 01:00:32,796
INSTITUTIONS IF YOU WANTED TO

1917
01:00:32,796 --> 01:00:37,300
TAKE A LOOK.

1918
01:00:37,300 --> 01:00:41,605
SO SEVERAL YEARSING A, WE YEARSY

1919
01:00:41,605 --> 01:00:43,006
DEVELOPED A STRATEGIC PLAN TO

1920
01:00:43,006 --> 01:00:44,007
BETTER VOCALIZE WHAT THE PROGRAM

1921
01:00:44,007 --> 01:00:44,941
WAS MOST INTERESTED IN.

1922
01:00:44,941 --> 01:00:48,445
WHERE WE FELT OUR NICHE WAS IN

1923
01:00:48,445 --> 01:00:51,281
THE BROADER SCOPE OF AUTISM

1924
01:00:51,281 --> 01:00:52,382
RESEARCH.

1925
01:00:52,382 --> 01:00:53,884
SO WE DEVELOPED OUR STRATEGIC

1926
01:00:53,884 --> 01:00:55,652
PLAN, WHICH COMPRISES OF FOUR

1927
01:00:55,652 --> 01:00:56,820
STRATEGIC GOALS WHICH I HAVE

1928
01:00:56,820 --> 01:00:58,788
HERE ON THE RIGHT-HAND SIDE.

1929
01:00:58,788 --> 01:01:02,158
SO THE PROGRAM IS INTERESTED IN

1930
01:01:02,158 --> 01:01:04,127
FUNDING THOSE TREATMENTS AND

1931
01:01:04,127 --> 01:01:05,762
INTERVENTIONS FOR AUTISM,

1932
01:01:05,762 --> 01:01:07,864
PROJECTS THAT WILL HELP ADDRESS

1933
01:01:07,864 --> 01:01:09,566
THE NEEDS OF AUTISTIC

1934
01:01:09,566 --> 01:01:12,102
INDIVIDUALS AS THEY MOVE INTO

1935
01:01:12,102 --> 01:01:13,737
ADULTHOOD, PROJECTS  THAT WILL

1936
01:01:13,737 --> 01:01:15,372
SUPPORT THOSE CARING FOR THE

1937
01:01:15,372 --> 01:01:17,173
AUTISM COMMUNITY, AND THEN THE

1938
01:01:17,173 --> 01:01:19,042
MORE BASIC MECHANISTIC STUDIES

1939
01:01:19,042 --> 01:01:20,911
TO HELP US UNDERSTAND THE

1940
01:01:20,911 --> 01:01:26,116
CAUSES, MECHANISMS AND SIGNS FOR

1941
01:01:26,116 --> 01:01:26,483
ASD.

1942
01:01:26,483 --> 01:01:29,719
AGAIN THOSE FOUR STRATEGIC GOALS

1943
01:01:29,719 --> 01:01:31,121
ARE REALLY CENTERED AROUND OUR

1944
01:01:31,121 --> 01:01:31,855
VISION STATEMENT.

1945
01:01:31,855 --> 01:01:33,323
WHAT I SHOW HERE ON THE

1946
01:01:33,323 --> 01:01:34,391
SUBBULLETS UNDER THESE FOUR

1947
01:01:34,391 --> 01:01:35,425
CATEGORIES ARE WHAT WE CALL OUR

1948
01:01:35,425 --> 01:01:36,359
AREAS OF INTEREST.

1949
01:01:36,359 --> 01:01:38,328
SO THE SPECIFIC TYPES OF

1950
01:01:38,328 --> 01:01:40,196
RESEARCH WE'RE LOOKING FOR EACH

1951
01:01:40,196 --> 01:01:40,630
YEAR.

1952
01:01:40,630 --> 01:01:43,900
THIS IS NOT AN ALL-ENCOMPASSING

1953
01:01:43,900 --> 01:01:46,069
LIST, EACH FUNDING SOLICITATION

1954
01:01:46,069 --> 01:01:47,304
NOTES THOSE SPECIFIC AREAS OF

1955
01:01:47,304 --> 01:01:48,872
INTEREST BUT I JUST WANTED TO

1956
01:01:48,872 --> 01:01:51,541
GIVE EVERYBODY A FEEL FOR THE

1957
01:01:51,541 --> 01:01:53,376
TYPES OF AREAS WE ARE MOST

1958
01:01:53,376 --> 01:02:01,818
INTERESTED IN.

1959
01:02:01,818 --> 01:02:04,788
SO MOVING ON TO OUR FY 24

1960
01:02:04,788 --> 01:02:06,256
PROGRAM, I JUST WANTED TO CALL

1961
01:02:06,256 --> 01:02:08,792
ATTENTION TO OUR FUNDING

1962
01:02:08,792 --> 01:02:09,759
OPPORTUNITIES, AND SOME OF OUR

1963
01:02:09,759 --> 01:02:12,662
NEW AREAS OF INTEREST FOR THIS

1964
01:02:12,662 --> 01:02:12,862
YEAR.

1965
01:02:12,862 --> 01:02:15,732
SO YOU CAN SEE HERE FROM THE

1966
01:02:15,732 --> 01:02:16,733
INFOGRAPHIC, THIS PROGRAM HAS

1967
01:02:16,733 --> 01:02:19,669
WORKED REALLY DILIGENTLY ON

1968
01:02:19,669 --> 01:02:21,638
FUNDING RESEARCH ACROSS THE

1969
01:02:21,638 --> 01:02:23,173
CONTINUUM.

1970
01:02:23,173 --> 01:02:25,241
SO EVERYTHING FROM THOSE VERY

1971
01:02:25,241 --> 01:02:28,144
INITIAL CONCEPTS, THOSE

1972
01:02:28,144 --> 01:02:29,379
INNOVATIVE NON-INCREMENTAL

1973
01:02:29,379 --> 01:02:30,914
RESEARCH IDEAS WITH NO

1974
01:02:30,914 --> 01:02:32,749
PRELIMINARY DATA THROUGH OUR

1975
01:02:32,749 --> 01:02:35,452
DISCOVERY AWARD, TO THOSE BIT

1976
01:02:35,452 --> 01:02:39,089
MORE MATURE EARLY IDEAS, THROUGH

1977
01:02:39,089 --> 01:02:40,824
OUR IDEA AWARD OR IDEA

1978
01:02:40,824 --> 01:02:43,426
DEVELOPMENT AWARD, AND THEN

1979
01:02:43,426 --> 01:02:44,194
FULL-FLEDGED CLINICAL TRIALS.

1980
01:02:44,194 --> 01:02:46,096
SO LOOKING AT THOSE PROJECTS

1981
01:02:46,096 --> 01:02:48,898
THAT HAVE THE POTENTIAL FOR

1982
01:02:48,898 --> 01:02:51,067
RAPID IMPLEMENTATION FOR THE

1983
01:02:51,067 --> 01:02:54,004
TREATMENT AND/OR MANAGEMENT OF

1984
01:02:54,004 --> 01:02:54,571
AUTISM.

1985
01:02:54,571 --> 01:02:55,538
ALSO OVER THE PAST SEVERAL

1986
01:02:55,538 --> 01:02:57,173
YEARS, WE'VE REALLY PUT MORE OF

1987
01:02:57,173 --> 01:03:00,210
A FOCUS ON RECRUITING AND

1988
01:03:00,210 --> 01:03:02,412
RETAINING THOSE EARLY CAREER

1989
01:03:02,412 --> 01:03:03,913
INVESTIGATORS TO GIVE THEM THE

1990
01:03:03,913 --> 01:03:05,248
OPPORTUNITY FOR FUNDING TO MAKE

1991
01:03:05,248 --> 01:03:06,850
SURE THEY STAY WITHIN THE

1992
01:03:06,850 --> 01:03:07,417
RESEARCH FIELD.

1993
01:03:07,417 --> 01:03:09,152
AND WE DO THAT REALLY IN TWO

1994
01:03:09,152 --> 01:03:10,487
WAYS.

1995
01:03:10,487 --> 01:03:12,422
WITH OUR CLINICAL TRIAL AWARD,

1996
01:03:12,422 --> 01:03:14,391
WE OFFER AN EARLY CAREER

1997
01:03:14,391 --> 01:03:18,428
INVESTIGATOR OPTION WHERE WE

1998
01:03:18,428 --> 01:03:19,629
PARTNER THOSE EARLY CAREER

1999
01:03:19,629 --> 01:03:20,497
INVESTIGATORS WITH AN

2000
01:03:20,497 --> 01:03:21,998
EXPERIENCED INVESTIGATOR TO GIVE

2001
01:03:21,998 --> 01:03:23,867
THEM THE TRAINING AND MENTORSHIP

2002
01:03:23,867 --> 01:03:26,169
TO BECOME SUCCESSFUL CLINICAL

2003
01:03:26,169 --> 01:03:28,438
TRIAL RESEARCHERS AS THEY MATURE

2004
01:03:28,438 --> 01:03:31,708
THROUGH THEIR CAREER.

2005
01:03:31,708 --> 01:03:34,010
WE ALSO OFFER A CAREER

2006
01:03:34,010 --> 01:03:35,745
DEVELOPMENT AWARD THAT'S FOCUSED

2007
01:03:35,745 --> 01:03:36,546
ON THOSE EARLY CAREER

2008
01:03:36,546 --> 01:03:38,848
INDEPENDENT INVESTIGATORS, AS

2009
01:03:38,848 --> 01:03:40,550
WELL AS TRYING TO BRING IN

2010
01:03:40,550 --> 01:03:42,285
PERHAPS THOSE ESTABLISHED

2011
01:03:42,285 --> 01:03:43,953
INVESTIGATORS FROM ANOTHER

2012
01:03:43,953 --> 01:03:46,423
RESEARCH FIELD THAT WANT TO DIVE

2013
01:03:46,423 --> 01:03:52,762
INTO AUTISM RESEARCH.

2014
01:03:52,762 --> 01:03:53,930
A COUPLE THINGS I WANTED TO

2015
01:03:53,930 --> 01:03:56,132
POINT OUT HERE FOR OUR AREAS OF

2016
01:03:56,132 --> 01:03:57,300
INTEREST FOR FY 24, THERE ARE

2017
01:03:57,300 --> 01:04:00,236
FOUR NEW ONES WE'VE INCLUDED

2018
01:04:00,236 --> 01:04:01,037
THIS YEAR.

2019
01:04:01,037 --> 01:04:03,540
LOOKING AT THOSE PROJECTS THAT

2020
01:04:03,540 --> 01:04:05,408
HAVE THE COMMUNITY SUPPORT AND

2021
01:04:05,408 --> 01:04:07,911
PARTICIPATORY RESEARCH

2022
01:04:07,911 --> 01:04:11,314
INTERVENTIONS, STUDIES THAT

2023
01:04:11,314 --> 01:04:12,415
ADDRESS FACTORS IMPACTING

2024
01:04:12,415 --> 01:04:13,683
QUALITY OF LIFE FOR CURRENT AND

2025
01:04:13,683 --> 01:04:16,186
FORMER MILITARY FAMILIES.

2026
01:04:16,186 --> 01:04:18,488
PROJECTS CENTERED AROUND GENDER

2027
01:04:18,488 --> 01:04:20,457
IDENTITY AND SEXUAL HEALTH, AND

2028
01:04:20,457 --> 01:04:22,759
THEN FINALLY, PROJECTS LOOKING

2029
01:04:22,759 --> 01:04:25,662
TO UNCOVER NEW ADVANCES USING A

2030
01:04:25,662 --> 01:04:26,863
STRENGTH-BASED MODEL.

2031
01:04:26,863 --> 01:04:28,732
OVER THE PAST COUPLE YEARS, WE

2032
01:04:28,732 --> 01:04:31,434
REALLY ARE TRYING TO GET THE

2033
01:04:31,434 --> 01:04:33,002
VOICES OF THE AUTISM COMMUNITY

2034
01:04:33,002 --> 01:04:34,738
TO BE INVOLVED WITH THE RESEARCH

2035
01:04:34,738 --> 01:04:37,140
THAT'S BEING CONDUCTED, SO

2036
01:04:37,140 --> 01:04:40,076
ACROSS ALL OF OUR FUNDING

2037
01:04:40,076 --> 01:04:42,812
MECHANISMS, WE ENCOURAGE

2038
01:04:42,812 --> 01:04:44,447
RESEARCHERS TO INVOLVE AUTISTIC

2039
01:04:44,447 --> 01:04:50,120
INDIVIDUALS, FAMILY MEMBERS,

2040
01:04:50,120 --> 01:04:53,289
INNER CAREGIVERS IN THEIR

2041
01:04:53,289 --> 01:04:55,492
RESEARCH PROJECT TEAMS.

2042
01:04:55,492 --> 01:04:57,160
JUST AN ANCILLARY NOTE, OVER THE

2043
01:04:57,160 --> 01:04:58,128
PAST COUPLE OF YEARS,

2044
01:04:58,128 --> 01:04:59,295
PARTICULARLY WITH THE CAREER

2045
01:04:59,295 --> 01:05:01,264
DEVELOPMENT AWARD, WE HAVE BEEN

2046
01:05:01,264 --> 01:05:02,665
SEEING AN INCREASE IN THE NUMBER

2047
01:05:02,665 --> 01:05:04,834
OF AUTISTIC RESEARCHERS

2048
01:05:04,834 --> 01:05:06,169
SUBMITTING TO THE PROGRAM, SO

2049
01:05:06,169 --> 01:05:07,871
THAT'S VERY EXCITING AND REALLY

2050
01:05:07,871 --> 01:05:09,439
GOOD NEWS TO GET THEIR VOICES

2051
01:05:09,439 --> 01:05:11,508
HEARD.

2052
01:05:11,508 --> 01:05:13,710
THE LAST THING I WANTED TO POINT

2053
01:05:13,710 --> 01:05:15,979
OUT AS FAR AS TIMELINES,

2054
01:05:15,979 --> 01:05:17,714
CURRENTLY OUR DISCOVERY AWARD,

2055
01:05:17,714 --> 01:05:19,682
AGAIN, THOSE ARE THOSE INITIAL

2056
01:05:19,682 --> 01:05:22,519
CONCEPTS, NO PRELIMINARY DATA,

2057
01:05:22,519 --> 01:05:26,122
SMALL DOLLAR AMOUNT, YOU KNOW,

2058
01:05:26,122 --> 01:05:30,360
TWO YEARS -- TWO-YEAR PERIOD OF

2059
01:05:30,360 --> 01:05:30,660
PERFORMANCE.

2060
01:05:30,660 --> 01:05:31,795
THE LETTER OF INTENT FOR THOSE

2061
01:05:31,795 --> 01:05:34,397
ARE DUE HERE IN A COUPLE WEEKS,

2062
01:05:34,397 --> 01:05:36,366
24 JULY, AND THEN FULL

2063
01:05:36,366 --> 01:05:37,901
APPLICATIONS WILL BE DUE MID

2064
01:05:37,901 --> 01:05:40,403
AUGUST.

2065
01:05:40,403 --> 01:05:43,239
AS FAR AS OUR OTHER THREE AWARD

2066
01:05:43,239 --> 01:05:45,208
MECHANISMS THAT I HAD MENTIONED,

2067
01:05:45,208 --> 01:05:46,709
THE IDEA DEVELOPMENT, CLINICAL

2068
01:05:46,709 --> 01:05:48,478
TRIAL AND THE CAREER DEVELOPMENT

2069
01:05:48,478 --> 01:05:51,881
AWARD, WE ACTUALLY HAD

2070
01:05:51,881 --> 01:05:53,082
PRE-PROPOSAL SUBMISSION AND THAT

2071
01:05:53,082 --> 01:05:54,684
DEADLINE HAS PASSED.

2072
01:05:54,684 --> 01:05:56,553
BUT THOSE WHO WERE INVITED TO

2073
01:05:56,553 --> 01:05:58,655
SUBMIT THOSE FULL APPLICATIONS,

2074
01:05:58,655 --> 01:06:00,390
THOSE ARE DUE IN THE MIDDLE OF

2075
01:06:00,390 --> 01:06:01,858
AUGUST AS WELL.

2076
01:06:01,858 --> 01:06:03,459
SO I JUST WANTED TO PUT A PLUG

2077
01:06:03,459 --> 01:06:04,961
IN, IF ANYBODY IS INTERESTED IN

2078
01:06:04,961 --> 01:06:07,397
TAKING A LOOK AT THE DISCOVERY

2079
01:06:07,397 --> 01:06:09,899
AWARD, IT IS STILL OPEN, SO I

2080
01:06:09,899 --> 01:06:11,000
ENCOURAGE EVERYBODY TO TAKE A

2081
01:06:11,000 --> 01:06:14,037
LOOK IF YOU'RE INTERESTED.

2082
01:06:14,037 --> 01:06:16,739
AND THAT IS ACTUALLY MY LAST

2083
01:06:16,739 --> 01:06:18,208
SLIDE.

2084
01:06:18,208 --> 01:06:20,844
>> THANK YOU VERY MUCH.

2085
01:06:20,844 --> 01:06:23,112
NEXT WE'LL BE HEARING FROM

2086
01:06:23,112 --> 01:06:24,681
DR. ALLYSON DEAN, FROM THE

2087
01:06:24,681 --> 01:06:26,049
ADMINISTRATION FOR COMMUNITY

2088
01:06:26,049 --> 01:06:26,983
AND -- FOR CHILDREN AND

2089
01:06:26,983 --> 01:06:28,785
FAMILIES.

2090
01:06:28,785 --> 01:06:30,186
>> HI.

2091
01:06:30,186 --> 01:06:31,487
DR. ALLYSON DEAN.

2092
01:06:31,487 --> 01:06:32,589
I AM THE INCLUSION AND

2093
01:06:32,589 --> 01:06:34,224
DISABILITY SERVICES SPECIALIST

2094
01:06:34,224 --> 01:06:36,759
FOR THE OFFICE OF HEAD START.

2095
01:06:36,759 --> 01:06:38,261
THE OFFICE OF HEAD START FITS

2096
01:06:38,261 --> 01:06:39,495
WITHIN THE ADMINISTRATION FOR

2097
01:06:39,495 --> 01:06:41,731
CHILDREN AND FAMILIES, WHOSE

2098
01:06:41,731 --> 01:06:44,367
MISSION REALLY IS TO SUPPORT THE

2099
01:06:44,367 --> 01:06:46,870
ECONOMIC AND SOCIAL WELL-BEING

2100
01:06:46,870 --> 01:06:49,272
OF CHILDREN, FAMILIES AND

2101
01:06:49,272 --> 01:06:50,139
INDIVIDUALS, SO THERE ARE MANY

2102
01:06:50,139 --> 01:06:52,242
PROGRAMS AND INITIATIVES WITHIN

2103
01:06:52,242 --> 01:06:55,745
ACF THAT TOUCH THE LIVES OF

2104
01:06:55,745 --> 01:06:56,746
INDIVIDUALS WITH AUTISM AND

2105
01:06:56,746 --> 01:06:57,580
THEIR FAMILIES, BUT TODAY I'M

2106
01:06:57,580 --> 01:06:59,883
GOING TO SPOTLIGHT WORK NEAR AND

2107
01:06:59,883 --> 01:07:02,252
DEAR TO MY HEART, WHICH IS EARLY

2108
01:07:02,252 --> 01:07:07,957
CHILDHOOD EDUCATION INITIATIVES.

2109
01:07:07,957 --> 01:07:08,925
SO WITHIN THIS SPOTLIGHT, I

2110
01:07:08,925 --> 01:07:10,460
WOULD SAY THAT OUR EARLY

2111
01:07:10,460 --> 01:07:12,095
CHILDHOOD INITIATIVES REALLY

2112
01:07:12,095 --> 01:07:14,264
FALL INTO TWO BIG BUCKETS.

2113
01:07:14,264 --> 01:07:16,232
THE FIRST IS SUPPORTING EARLY

2114
01:07:16,232 --> 01:07:17,967
SCREENING, ASSESSMENT AND

2115
01:07:17,967 --> 01:07:21,037
DETECTION OF DISABILITIES,

2116
01:07:21,037 --> 01:07:23,306
AUTISM, LEARNING DIFFERENCES, ET

2117
01:07:23,306 --> 01:07:23,973
CETERA.

2118
01:07:23,973 --> 01:07:27,944
WITH THE INTENT REALLY TO --

2119
01:07:27,944 --> 01:07:29,112
THAT THROUGH EARLY DETECTION, WE

2120
01:07:29,112 --> 01:07:30,013
CAN MAKE A DIFFERENCE IN

2121
01:07:30,013 --> 01:07:30,880
OUTCOMES FOR CHILDREN AND

2122
01:07:30,880 --> 01:07:32,615
FAMILIES.

2123
01:07:32,615 --> 01:07:34,250
WE DO THAT BY PARTNERING WITH

2124
01:07:34,250 --> 01:07:36,653
OTHER GOVERNMENTAL AGENCIES,

2125
01:07:36,653 --> 01:07:40,823
INCLUDING THE CDC, OCEP AND

2126
01:07:40,823 --> 01:07:41,991
OTHER ORGANIZATIONS COMMITTED TO

2127
01:07:41,991 --> 01:07:43,860
THE SAME MISSION.

2128
01:07:43,860 --> 01:07:46,162
AND WE DO THAT BY PROMOTING

2129
01:07:46,162 --> 01:07:48,197
THEIR MATERIALS TO FAMILIES AND

2130
01:07:48,197 --> 01:07:50,099
REALLY TO OUR WORKFORCE.

2131
01:07:50,099 --> 01:07:53,670
ONE OF THE THINGS WE RELY ON IS

2132
01:07:53,670 --> 01:07:56,506
WITHIN CDC IS THE BIRTH TO

2133
01:07:56,506 --> 01:07:57,507
5 WATCH ME THRIVE TRAINING,

2134
01:07:57,507 --> 01:07:59,142
WHICH ARE EARLY CARE AND

2135
01:07:59,142 --> 01:08:03,079
EDUCATION PROVIDERS THROUGH MANY

2136
01:08:03,079 --> 01:08:04,714
VENUES THAT WE PROMOTEMENT

2137
01:08:04,714 --> 01:08:09,652
WITHIN DIRECT SERVICE DELIVERY,

2138
01:08:09,652 --> 01:08:11,287
WITHIN ACF WE DELIVER DIRECT

2139
01:08:11,287 --> 01:08:12,155
SERVICE TO CHILDREN WITH AUTISM

2140
01:08:12,155 --> 01:08:13,690
BY INCLUDING THEM IN OUR HEAD

2141
01:08:13,690 --> 01:08:16,526
START PROGRAMS, OUR CHILD CARE

2142
01:08:16,526 --> 01:08:20,663
PROGRAMS, OUR PUBLIC PRE-K

2143
01:08:20,663 --> 01:08:22,098
PROGRAMS, AND WE DO ALL OF THAT

2144
01:08:22,098 --> 01:08:23,833
IN PARTNERSHIP WITH OUR IDEA

2145
01:08:23,833 --> 01:08:25,301
PARTNERS WHO DELIVER PART B AND

2146
01:08:25,301 --> 01:08:29,605
PART C SERVICES LOCALLY.

2147
01:08:29,605 --> 01:08:31,307
WE ALSO WORK DIRECTLY WITH THE

2148
01:08:31,307 --> 01:08:34,110
DEPARTMENT OF ED TO PROMOTE AND

2149
01:08:34,110 --> 01:08:36,279
PUBLISH A JOINT POLICY STATEMENT

2150
01:08:36,279 --> 01:08:38,381
THIS YEAR ON INCLUSION TO REALLY

2151
01:08:38,381 --> 01:08:40,350
PROMOTE LOCAL PARTNERSHIPS TO

2152
01:08:40,350 --> 01:08:41,317
SUPPORT CHILDREN WITH

2153
01:08:41,317 --> 01:08:42,852
DISABILITIES, CHILDREN WITH

2154
01:08:42,852 --> 01:08:45,054
AUTISM, TO RECEIVE THE EARLY

2155
01:08:45,054 --> 01:08:47,824
INTERVENTION AND EARLY CHILDHOOD

2156
01:08:47,824 --> 01:08:48,491
SPECIAL EDUCATION SERVICES THAT

2157
01:08:48,491 --> 01:08:51,928
THEY ARE ELIGIBLE FOR WITHIN

2158
01:08:51,928 --> 01:08:52,795
LEAST RESTRICTIVE ENVIRONMENTS,

2159
01:08:52,795 --> 01:08:54,664
WHERE THEY CAN PLAY AND LEARN

2160
01:08:54,664 --> 01:08:56,632
AND DEVELOP ALONGSIDE THEIR

2161
01:08:56,632 --> 01:08:58,501
TYPICALLY DEVELOPING PEERS.

2162
01:08:58,501 --> 01:09:00,536
THE POPULATION OF CHILDREN WITH

2163
01:09:00,536 --> 01:09:02,171
DISABILITIES IN OUR EARLY

2164
01:09:02,171 --> 01:09:03,306
CHILDHOOD EDUCATION SETTINGS

2165
01:09:03,306 --> 01:09:06,476
LAST YEAR WAS ABOUT 13%, AND

2166
01:09:06,476 --> 01:09:11,848
WITHIN THAT, 6,800, I BELIEVE,

2167
01:09:11,848 --> 01:09:13,349
CHILDREN HAVE A DIAGNOSIS OF

2168
01:09:13,349 --> 01:09:13,916
AUTISM.

2169
01:09:13,916 --> 01:09:16,319
AUTISM IS OUR FASTEST GROWING

2170
01:09:16,319 --> 01:09:18,087
DIAGNOSIS WITHIN OUR EARLY

2171
01:09:18,087 --> 01:09:22,658
CHILDHOOD EDUCATION SETTING.

2172
01:09:22,658 --> 01:09:25,728
SOME OF THE WAYS THAT WE SUPPORT

2173
01:09:25,728 --> 01:09:30,099
THE ADULTS WITHIN OUR WORK SCOPE

2174
01:09:30,099 --> 01:09:34,237
ARE, AS I ALREADY SAID, THE CDC

2175
01:09:34,237 --> 01:09:42,111
AS PARTICULARLY THE MILESTONE

2176
01:09:42,111 --> 01:09:42,545
MARKERS.

2177
01:09:42,545 --> 01:09:45,815
WE DEVELOPED A MOBILE APP CALLED

2178
01:09:45,815 --> 01:09:49,652
THE INCLUSION LAB WHICH IS A AN

2179
01:09:49,652 --> 01:09:51,721
APPLICATION FOR EARLY CHILDHOOD

2180
01:09:51,721 --> 01:09:53,489
TEACHERS WHO ARE WORKING WITH

2181
01:09:53,489 --> 01:09:54,457
CHILDREN WITH DISABILITY, WHO

2182
01:09:54,457 --> 01:09:56,859
CAN REALLY WORK THROUGH A

2183
01:09:56,859 --> 01:09:57,593
TEACH-ASSESS-ADJUST CYCLE IN

2184
01:09:57,593 --> 01:09:58,695
TERMS OF MAKING SURE THAT CHERN

2185
01:09:58,695 --> 01:10:03,166
HAVE THE SUCHILDREN HAVE THE SUY

2186
01:10:03,166 --> 01:10:05,468
NEED, THE TAILORED AND

2187
01:10:05,468 --> 01:10:07,003
INTENTIONAL SUPPORTS THAT ALLOW

2188
01:10:07,003 --> 01:10:08,404
THEM TO BE SUCCESSFUL TO FULLY

2189
01:10:08,404 --> 01:10:09,839
PARTICIPATE IN THEIR EARLY

2190
01:10:09,839 --> 01:10:10,706
CHILDHOOD LEARNING SETTINGS.

2191
01:10:10,706 --> 01:10:12,108
WE ALSO HAVE THE HEAD START

2192
01:10:12,108 --> 01:10:13,743
CENTER FOR INCLUSION, WHICH IS

2193
01:10:13,743 --> 01:10:17,814
AN ONLINE WEBSITE THAT INCLUDES

2194
01:10:17,814 --> 01:10:19,782
MANY RESOURCES TAILORED

2195
01:10:19,782 --> 01:10:21,184
SPECIFICALLY TO AUTISM SPECTRUM

2196
01:10:21,184 --> 01:10:22,385
DISORDER.

2197
01:10:22,385 --> 01:10:23,486
THESE INCLUDE FACT SHEETS,

2198
01:10:23,486 --> 01:10:27,223
TRAINING MODULES, AS WELL AS

2199
01:10:27,223 --> 01:10:31,461
ACTUAL PRACTICAL SUPPORTS FOR

2200
01:10:31,461 --> 01:10:33,062
TEACHERS LIKE CLASSROOM VISUAL

2201
01:10:33,062 --> 01:10:33,996
AIDS AND OTHER THINGS THAT CAN

2202
01:10:33,996 --> 01:10:35,064
REALLY HELP CHILDREN BE

2203
01:10:35,064 --> 01:10:36,165
SUCCESSFUL IN THOSE GROUP

2204
01:10:36,165 --> 01:10:40,970
LEARNING SETTINGS.

2205
01:10:40,970 --> 01:10:43,740
WE ALSO DO WORK, I WOULD SAY

2206
01:10:43,740 --> 01:10:45,808
PRIMARILY THROUGH PUBLIC PRE-K

2207
01:10:45,808 --> 01:10:47,510
AND OUR CHILD CARE DEVELOPMENT

2208
01:10:47,510 --> 01:10:49,245
BLOCK FUND INITIATIVES WITH

2209
01:10:49,245 --> 01:10:50,613
STATES.

2210
01:10:50,613 --> 01:10:53,116
WE ISSUE POLICY AND GUIDANCE TO

2211
01:10:53,116 --> 01:10:54,350
STATES.

2212
01:10:54,350 --> 01:10:57,487
WE ALSO PROVIDE FUNDING FOR

2213
01:10:57,487 --> 01:10:59,889
APPROXIMATELY I THINK LAST YEAR

2214
01:10:59,889 --> 01:11:00,656
1.4 MILLION CHILDREN TO BE

2215
01:11:00,656 --> 01:11:03,860
SERVED THROUGH CHILD CARE

2216
01:11:03,860 --> 01:11:04,827
PROGRAMS IN STATES.

2217
01:11:04,827 --> 01:11:07,330
AND WITHIN THOSE STATE SYSTEMS,

2218
01:11:07,330 --> 01:11:09,165
WE USE MANY LEVERS THROUGH THAT

2219
01:11:09,165 --> 01:11:10,800
FUNDING OPPORTUNITY TO SUPPORT

2220
01:11:10,800 --> 01:11:11,767
INCLUSION OF CHILDREN WITH

2221
01:11:11,767 --> 01:11:13,436
DISABILITIES.

2222
01:11:13,436 --> 01:11:15,738
INCLUDING CHILDREN WITH AUTISM

2223
01:11:15,738 --> 01:11:18,241
IN PROGRAMS INCLUDING INCREASED

2224
01:11:18,241 --> 01:11:19,442
REIMBURSEMENT RATES FOR PROGRAMS

2225
01:11:19,442 --> 01:11:23,679
AND OTHER INCENTIVES THAT HELP

2226
01:11:23,679 --> 01:11:24,781
PROGRAMS REALLY CREATE INCLUSIVE

2227
01:11:24,781 --> 01:11:27,917
SPACES FOR CHILDREN, AND PROVIDE

2228
01:11:27,917 --> 01:11:30,186
CARE FOR CHILDREN WHILE FAMILIES

2229
01:11:30,186 --> 01:11:32,755
GO TO WORK OR ATTEND TRAINING OR

2230
01:11:32,755 --> 01:11:34,490
EDUCATION PROGRAMS.

2231
01:11:34,490 --> 01:11:36,592
THIS YEAR IN PARTICULAR, WE

2232
01:11:36,592 --> 01:11:38,661
ISSUED POLICY GUIDANCE ON EARLY

2233
01:11:38,661 --> 01:11:40,730
CHILDHOOD BEHAVIORAL AND MENTAL

2234
01:11:40,730 --> 01:11:43,332
HEALTH SUPPORTS, WHICH REALLY

2235
01:11:43,332 --> 01:11:44,467
GIVES STATE GUIDANCE ABOUT HOW

2236
01:11:44,467 --> 01:11:47,103
THEY CAN USE THEIR FUNDING TO

2237
01:11:47,103 --> 01:11:48,471
INCREASE ACCESS TO BEHAVIORAL

2238
01:11:48,471 --> 01:11:51,107
AND MENTAL HEALTH SUPPORTS NOT

2239
01:11:51,107 --> 01:11:54,277
ONLY FOR CHILDREN AND FAMI

2240
01:11:54,277 --> 01:11:54,944
FAMILIES -- FAMILIES AND

2241
01:11:54,944 --> 01:11:56,379
CHILDREN WITH DISABILITIES, BUT

2242
01:11:56,379 --> 01:11:58,247
ALSO FOR CAREGIVERS.

2243
01:11:58,247 --> 01:12:00,483
AND IN ADDITION TO BEHAVIORAL

2244
01:12:00,483 --> 01:12:02,952
HEALTH SUPPORTS IN TERMS OF

2245
01:12:02,952 --> 01:12:04,053
HELPING CLASSROOM TEACHERS

2246
01:12:04,053 --> 01:12:06,556
UNDERSTAND HOW TO MANAGE

2247
01:12:06,556 --> 01:12:08,090
BEHAVIOR FOR CHILDREN WITH

2248
01:12:08,090 --> 01:12:09,525
DISABILITIES IN GROUP SETTINGS,

2249
01:12:09,525 --> 01:12:11,160
WHETHER THAT'S RELATED TO THEIR

2250
01:12:11,160 --> 01:12:13,229
DISABILITY OR NOT.

2251
01:12:13,229 --> 01:12:15,398
THOSE SUPPORT ARE PROMOTED, AND

2252
01:12:15,398 --> 01:12:17,366
ALSO MENTAL HEALTH FOR STAFF,

2253
01:12:17,366 --> 01:12:22,271
FAMILY AND ADULT WELL-BEING.

2254
01:12:22,271 --> 01:12:24,040
SO THOSE ARE SOME OF THE

2255
01:12:24,040 --> 01:12:25,808
INITIATIVES MOST CLOSELY ALIGNED

2256
01:12:25,808 --> 01:12:27,743
TO SUPPORTS FOR INDIVIDUALS WITH

2257
01:12:27,743 --> 01:12:28,744
AUTISM.

2258
01:12:28,744 --> 01:12:29,912
AND THANKS FOR LETTING ME SHARE

2259
01:12:29,912 --> 01:12:32,481
TODAY.

2260
01:12:32,481 --> 01:12:34,650
>> THANK YOU VERY MUCH.

2261
01:12:34,650 --> 01:12:36,619
NEXT WE'LL BE HEARING FROM

2262
01:12:36,619 --> 01:12:37,954
MS. BARBARA ROLAND FROM THE

2263
01:12:37,954 --> 01:12:43,092
INDIAN HEALTH SERVICE.

2264
01:12:43,092 --> 01:12:43,759
>> GOOD MORNING.

2265
01:12:43,759 --> 01:12:44,961
THANK YOU FOR ALLOWING US TO BE

2266
01:12:44,961 --> 01:12:48,764
A PART OF THIS PROGRAM.

2267
01:12:48,764 --> 01:12:49,866
WE SUPPORT AUTISM SERVICES AND

2268
01:12:49,866 --> 01:12:50,833
ARE VERY PROUD OF THE THINGS

2269
01:12:50,833 --> 01:12:53,569
THAT WE DO.

2270
01:12:53,569 --> 01:12:54,237
THE INDIAN HEALTH SERVICE

2271
01:12:54,237 --> 01:12:55,438
PROVIDES CLINICAL ASSESSMENT

2272
01:12:55,438 --> 01:12:58,708
SERVICES AND SUPPORT TO AMERICAN

2273
01:12:58,708 --> 01:13:00,710
INDIAN/ALASKA NATIVES REGARDING

2274
01:13:00,710 --> 01:13:00,943
AUTISM.

2275
01:13:00,943 --> 01:13:02,078
THESE SERVICES OFTEN INCLUDE

2276
01:13:02,078 --> 01:13:03,512
OTHER DIAGNOSES SUCH AS

2277
01:13:03,512 --> 01:13:05,581
DEPRESSION, ANXIETY, AND SUICIDE

2278
01:13:05,581 --> 01:13:07,883
AMONG OTHERS.

2279
01:13:07,883 --> 01:13:09,318
OUR PATIENTS MAY BE REFERRED TO

2280
01:13:09,318 --> 01:13:13,789
OUTSIDE PROVIDERS, AND COSTS MAY

2281
01:13:13,789 --> 01:13:17,960
BE COVERED WHEN AVAILABLE.

2282
01:13:17,960 --> 01:13:19,795
THE PROVIDER CONSULTATION CLINIC

2283
01:13:19,795 --> 01:13:21,230
ALLOWS FEDERAL TRIBAL AND URBAN

2284
01:13:21,230 --> 01:13:23,432
PROVIDERS TO SEEK EXPERT

2285
01:13:23,432 --> 01:13:26,636
ASSISTANCE IN CLINICAL GUIDANCE

2286
01:13:26,636 --> 01:13:27,770
FROM HEALTHCARE PROFESSIONALS.

2287
01:13:27,770 --> 01:13:31,440
WE SPECIALIZE IN ASD, FASD AND

2288
01:13:31,440 --> 01:13:32,041
NEURODEVELOPMENTAL DISORDERS.

2289
01:13:32,041 --> 01:13:34,910
SO YOU CAN ACCESS THE INDIAN

2290
01:13:34,910 --> 01:13:37,747
HEALTH SERVICE.GOV INDIAN

2291
01:13:37,747 --> 01:13:38,714
CHILDREN'S PROGRAM ON OUR

2292
01:13:38,714 --> 01:13:40,283
WEBSITE.

2293
01:13:40,283 --> 01:13:41,150
THIS CONSULTATION SERVICE IS

2294
01:13:41,150 --> 01:13:43,219
DESIGNED TO SUPPORT HEALTHCARE

2295
01:13:43,219 --> 01:13:47,523
STAFF WORKING IN FEDERAL, TRIBAL

2296
01:13:47,523 --> 01:13:53,763
AND RURAL FACILITIES AGES

2297
01:13:53,763 --> 01:13:59,101
1 THROUGH 23, PRIMARY HEALTH

2298
01:13:59,101 --> 01:13:59,869
PROVIDERS, BEHAVIORAL PROVIDERS

2299
01:13:59,869 --> 01:14:01,070
AND OTHER HEALTHCARE STAFF.

2300
01:14:01,070 --> 01:14:04,240
CONSUL TAIGS CAN HELP PROVIDE

2301
01:14:04,240 --> 01:14:04,907
BEHAVIORAL HEALTH INTERVENTION

2302
01:14:04,907 --> 01:14:05,341
RECOMMENDATIONS AND

2303
01:14:05,341 --> 01:14:07,943
RECOMMENDATIONS FOR SUPPORT AND

2304
01:14:07,943 --> 01:14:10,146
RESOURCES.

2305
01:14:10,146 --> 01:14:12,782
THE CENTER PROVIDES SUPPORT TO

2306
01:14:12,782 --> 01:14:18,788
PROVIDERS AND NEURODIVERSE

2307
01:14:18,788 --> 01:14:20,756
PUBLIC.

2308
01:14:20,756 --> 01:14:24,360
THE IHS PARTNERS WITH THE

2309
01:14:24,360 --> 01:14:28,064
INTERAGENCY AUTISM COORDINATING

2310
01:14:28,064 --> 01:14:30,032
COMMITTEE -- CONCERNING AUTISM

2311
01:14:30,032 --> 01:14:32,435
SPECTRUM DISORDER, WHICH YOU ALL

2312
01:14:32,435 --> 01:14:32,635
KNOW.

2313
01:14:32,635 --> 01:14:35,204
THE IACC -- TO ENSURE THAT A

2314
01:14:35,204 --> 01:14:36,939
WIDE RANGE OF IDEAS AND

2315
01:14:36,939 --> 01:14:39,342
PERSPECTIVES ARE REPRESENTED AND

2316
01:14:39,342 --> 01:14:40,743
DISCUSSED IN A PUBLIC FORUM.

2317
01:14:40,743 --> 01:14:43,479
THE IACC MISSION, WHICH I'M SURE

2318
01:14:43,479 --> 01:14:46,482
YOU ALL KNOW AS WELL, PROVIDES

2319
01:14:46,482 --> 01:14:49,051
ADVICE TO THE SECRETARY OF

2320
01:14:49,051 --> 01:14:50,753
HEALTH HEALTH AND HUMAN SERVICES

2321
01:14:50,753 --> 01:14:52,021
RELATED TO AUTISM SPECTRUM

2322
01:14:52,021 --> 01:14:53,222
DISORDER.

2323
01:14:53,222 --> 01:14:55,524
ALSO TO FACILITATE THE EXCHANGE

2324
01:14:55,524 --> 01:14:56,726
OF INFORMATION ON AND

2325
01:14:56,726 --> 01:14:59,995
COORDINATION OF ASD ACTIVITIES

2326
01:14:59,995 --> 01:15:00,996
AMONG AGENCIES AND

2327
01:15:00,996 --> 01:15:02,298
ORGANIZATIONS, AND TO INCREASE

2328
01:15:02,298 --> 01:15:05,134
PUBLIC UNDERSTANDING OF THESE

2329
01:15:05,134 --> 01:15:06,435
AGENCIES' ACTIVITIES, POLICIES

2330
01:15:06,435 --> 01:15:09,305
AND RESEARCH BY PROVIDING -- THE

2331
01:15:09,305 --> 01:15:14,777
MISSION OF IHS TELEBEHAVIORAL

2332
01:15:14,777 --> 01:15:16,212
HEALTH CENTER OF EXCELLENCE

2333
01:15:16,212 --> 01:15:17,513
INDIAN CHILDREN'S PROGRAM IS TO

2334
01:15:17,513 --> 01:15:20,015
EQUIP HEALTHCARE PROVIDERS WITH

2335
01:15:20,015 --> 01:15:21,884
TRAINING AND EDUCATION TO

2336
01:15:21,884 --> 01:15:25,521
PROVIDE EXCELLENT CARE FOR

2337
01:15:25,521 --> 01:15:27,456
AUTISM SPECTRUM DISORDER, FETAL

2338
01:15:27,456 --> 01:15:30,092
ALCOHOL SPECTRUM DISORDER AND

2339
01:15:30,092 --> 01:15:30,593
OTHER NEURODEVELOPMENTAL

2340
01:15:30,593 --> 01:15:36,866
DISORDERS.

2341
01:15:36,866 --> 01:15:38,934
IHS PROVIDES AUTISM-RELATED

2342
01:15:38,934 --> 01:15:41,804
WEBINARS THROUGH TBHCE.

2343
01:15:41,804 --> 01:15:43,305
HERE'S A LIST OF TOPICS THAT

2344
01:15:43,305 --> 01:15:44,774
HAVE BEEN PROVIDED THIS YEAR.

2345
01:15:44,774 --> 01:15:47,376
UNFORTUNATELY ALL OF THE

2346
01:15:47,376 --> 01:15:49,345
WEBINARS HAVE BEEN PRESENTED.

2347
01:15:49,345 --> 01:15:52,014
HOWEVER, THERE IS A PLACE THAT

2348
01:15:52,014 --> 01:15:55,985
YOU CAN GO TO THE IHS

2349
01:15:55,985 --> 01:15:57,019
TELEBEHAVIORAL HEALTH WEBSITE

2350
01:15:57,019 --> 01:15:58,888
THAT'S ON THE SCREEN, AND YOU

2351
01:15:58,888 --> 01:16:02,191
CAN LOOK AT THE ARCHIVED

2352
01:16:02,191 --> 01:16:05,361
PRESENTATIONS TH BACK FOR MANY,

2353
01:16:05,361 --> 01:16:10,166
MANY YEARS.

2354
01:16:10,166 --> 01:16:11,534
AND WE WILL WAIT ON QUESTIONS

2355
01:16:11,534 --> 01:16:13,402
UNTIL THE WHOLE PANEL DISCUSSES

2356
01:16:13,402 --> 01:16:13,602
THEM.

2357
01:16:13,602 --> 01:16:15,538
SO THAT'S IT FOR IHS.

2358
01:16:15,538 --> 01:16:17,873
THANK YOU VERY MUCH.

2359
01:16:17,873 --> 01:16:20,509
>> THANK YOU.

2360
01:16:20,509 --> 01:16:23,479
NEXT WE'RE GOING TO HEAR FROM

2361
01:16:23,479 --> 01:16:30,619
DR. MAXINE KELLMAN.

2362
01:16:30,619 --> 01:16:31,887
>> HELLO, EVERYONE.

2363
01:16:31,887 --> 01:16:34,857
I AM DR. MAXINE KELLMAN, SENIOR

2364
01:16:34,857 --> 01:16:38,661
PUBLIC HEALTH ANALYST, AND A

2365
01:16:38,661 --> 01:16:39,862
DESIGNATED FEDERAL OFFICER FOR

2366
01:16:39,862 --> 01:16:41,664
THE NATIONAL ADVISORY COMMITTEE

2367
01:16:41,664 --> 01:16:45,234
ON SENIORS AND DISASTERS.

2368
01:16:45,234 --> 01:16:47,970
I AM IN THE ADMINISTRATION FOR

2369
01:16:47,970 --> 01:16:49,205
STRATEGIC PREPAREDNESS AND

2370
01:16:49,205 --> 01:16:49,505
RESPONSE.

2371
01:16:49,505 --> 01:16:53,108
WE RECENTLY WENT FROM A STAFF

2372
01:16:53,108 --> 01:16:55,211
DIV TO OP DIV SO THAT'S OUR NEW

2373
01:16:55,211 --> 01:16:58,380
NAME BUT WE STILL GO BY ASPR.

2374
01:16:58,380 --> 01:17:00,449
TODAY I'LL GIVE A BRIEF OVERVIEW

2375
01:17:00,449 --> 01:17:02,618
OF ASPR'S ADVISORY COMMITTEES ON

2376
01:17:02,618 --> 01:17:03,853
OLDER ADULTS AND PEOPLE WITH

2377
01:17:03,853 --> 01:17:09,325
DISABILITIES.

2378
01:17:09,325 --> 01:17:11,293
NOW ASPR'S MISSION IN A NUTSHELL

2379
01:17:11,293 --> 01:17:15,431
IS TO SAVE LIVES, AND PROTECT

2380
01:17:15,431 --> 01:17:16,732
THE NATION FROM HEALTH SECURITY

2381
01:17:16,732 --> 01:17:22,972
THREATS.

2382
01:17:22,972 --> 01:17:24,306
FOR TODAY'S AGENDA, WE'LL GO

2383
01:17:24,306 --> 01:17:25,708
THROUGH LEGISLATION,

2384
01:17:25,708 --> 01:17:28,444
REGULATIONS, AND MEMBERSHIP.

2385
01:17:28,444 --> 01:17:30,880
THE NATIONAL -- FOR THE NATIONAL

2386
01:17:30,880 --> 01:17:32,414
ADVISORY COMMITTEE ON SENIORS

2387
01:17:32,414 --> 01:17:35,050
AND DISASTERS OR NACSD GOING

2388
01:17:35,050 --> 01:17:36,252
FORWARD, AND THE NATIONAL

2389
01:17:36,252 --> 01:17:37,286
ADVISORY COMMITTEE ON

2390
01:17:37,286 --> 01:17:37,887
INDIVIDUALS WITH DISABILITIES

2391
01:17:37,887 --> 01:17:42,024
AND DISASTERS, NACIDD.

2392
01:17:42,024 --> 01:17:42,258
 GOING

2393
01:17:42,258 --> 01:17:43,359
FORWARD.

2394
01:17:43,359 --> 01:17:45,327
AND ALSO GIVE AN OVERVIEW OF THE

2395
01:17:45,327 --> 01:17:50,799
RECOMMENDATIONS.

2396
01:17:50,799 --> 01:17:54,169
AS FOR THE LEGISLATION AND

2397
01:17:54,169 --> 01:17:55,704
REGULATIONS, THESE COMMITTEES

2398
01:17:55,704 --> 01:17:57,239
FALL UNDER THE AUTHORITIES OF

2399
01:17:57,239 --> 01:17:59,208
THE PANDEMIC AND ALL-HAZARDS

2400
01:17:59,208 --> 01:18:01,310
PREPAREDNESS AND ADVANCING

2401
01:18:01,310 --> 01:18:04,346
INNOVATIONS ACT, OR PAHPAIA.

2402
01:18:04,346 --> 01:18:06,882
THAT WAS CREATED IN 2019.

2403
01:18:06,882 --> 01:18:08,984
AND ALSO FEDERAL ADVISORY

2404
01:18:08,984 --> 01:18:11,387
COMMITTEE ACT OF FACA.

2405
01:18:11,387 --> 01:18:15,758
FOR THE COMMITTEE PURPOSE, THE

2406
01:18:15,758 --> 01:18:18,294
NACSD ADVISES AND PROVIDES

2407
01:18:18,294 --> 01:18:19,895
RECOMMENDATIONS TO BOTH THE HHS

2408
01:18:19,895 --> 01:18:21,363
SECRETARY AND THE ASPR AS IT

2409
01:18:21,363 --> 01:18:23,432
RELATES TO UNIQUE NEEDS OF OLDER

2410
01:18:23,432 --> 01:18:25,768
ADULTS, WHEREAS NACIDD FOCUSES

2411
01:18:25,768 --> 01:18:28,470
ON PEOPLE WITH DISABILITIES AND

2412
01:18:28,470 --> 01:18:29,905
BOTH ARE IMPORTANT FOR

2413
01:18:29,905 --> 01:18:31,974
PREPARATION FOR RESPONSE AND

2414
01:18:31,974 --> 01:18:36,045
RECOVERY DURING DISASTERS.

2415
01:18:36,045 --> 01:18:37,746
BOTH FALL UNDER THE GENERAL

2416
01:18:37,746 --> 01:18:42,618
SERVICES ADMINISTRATIONS AND

2417
01:18:42,618 --> 01:18:51,060
REQUIREMENTS VIA FACA.

2418
01:18:51,060 --> 01:18:52,695
IN TERMS OF MEMBERSHIP, BOTH

2419
01:18:52,695 --> 01:18:54,763
COMMITTEES HAVE SEVEN

2420
01:18:54,763 --> 01:18:56,966
NON-FEDERAL VOTING MEMBERS.

2421
01:18:56,966 --> 01:18:59,935
THEY SERVE THREE-YEAR TERM AND

2422
01:18:59,935 --> 01:19:01,303
PROVIDE RECOMMENDATIONS TO THE

2423
01:19:01,303 --> 01:19:05,074
SECOSECRETARY AND ASPR.

2424
01:19:05,074 --> 01:19:07,676
BOTH COMMITTEES HAVE 10

2425
01:19:07,676 --> 01:19:09,044
EX-OFFICIO MEMBERS FROM VARIOUS

2426
01:19:09,044 --> 01:19:11,046
AGENCIES INCLUDING THE V.A. AND

2427
01:19:11,046 --> 01:19:11,814
ACL.

2428
01:19:11,814 --> 01:19:16,518
FOR THE SENIORS COMMITTEES, AT

2429
01:19:16,518 --> 01:19:18,487
LEAST TWO HEALTH PROFESSIONALS

2430
01:19:18,487 --> 01:19:21,323
WITH EXPERTISE IN GERONTOLOGY

2431
01:19:21,323 --> 01:19:22,925
AND GERIATRIC DISASTER PLANNING

2432
01:19:22,925 --> 01:19:27,129
ARE REQUIRED.

2433
01:19:27,129 --> 01:19:28,397
 FOR THE INDIVIDUALS

2434
01:19:28,397 --> 01:19:29,531
WITH DISABILITIES COMMITTEE, AT

2435
01:19:29,531 --> 01:19:31,200
LEAST TWO HEALTH PROFESSIONALS

2436
01:19:31,200 --> 01:19:33,268
WITH EXPERIENCE IN DISABILITY

2437
01:19:33,268 --> 01:19:36,105
AND ACCESSIBILITY CARE IN

2438
01:19:36,105 --> 01:19:37,640
DISASTERS, AS WELL AS TWO PEOPLE

2439
01:19:37,640 --> 01:19:40,809
WHO ACTUALLY WITH DISABILITY AND

2440
01:19:40,809 --> 01:19:42,444
ALSO HAVE DISASTER MANAGEMENT

2441
01:19:42,444 --> 01:19:48,717
EXPERTISE.

2442
01:19:48,717 --> 01:19:52,521
FOR THE NACSD AND NACIDD

2443
01:19:52,521 --> 01:19:53,956
RECOMMENDATIONS, THE COMMITTEES

2444
01:19:53,956 --> 01:19:56,725
OFFER RECOMMENDATIONS TO ASSIST

2445
01:19:56,725 --> 01:19:58,360
THE SECRETARY IN BEST SERVING

2446
01:19:58,360 --> 01:20:01,296
OLDER ADULTS AND PEOPLE WITH

2447
01:20:01,296 --> 01:20:04,166
DISABILITIES BEFORE, DURING AND

2448
01:20:04,166 --> 01:20:06,235
AFTER DISASTER EVENTS.

2449
01:20:06,235 --> 01:20:08,203
RECOMMENDATIONS FOCUS ON COMMUTE

2450
01:20:08,203 --> 01:20:09,805
READINESS, INFRASTRUCTURE, AND

2451
01:20:09,805 --> 01:20:17,513
BEHAVIORAL HEALTH.

2452
01:20:17,513 --> 01:20:22,351
FOR TH THE NACSD, THE FIRST SETF

2453
01:20:22,351 --> 01:20:28,290
RECOMMENDATIONS COMPLETED IN MAE

2454
01:20:28,290 --> 01:20:30,459
DISSEMINATION OF EMERGENCY

2455
01:20:30,459 --> 01:20:31,860
PREPAREDNESS AND MITIGATION

2456
01:20:31,860 --> 01:20:34,396
INFORMATION BY MAKING IT MORE

2457
01:20:34,396 --> 01:20:37,099
ACCESSIBLE AND USER-FRIENDLY,

2458
01:20:37,099 --> 01:20:38,801
AND ALSO THE ESTABLISHMENT OF

2459
01:20:38,801 --> 01:20:40,202
DISASTER CARE CENTERS FOR OLDER

2460
01:20:40,202 --> 01:20:50,345
ADULTS.

2461
01:20:52,314 --> 01:20:54,683
THE NACSD COMPLETED ANOTHER SET

2462
01:20:54,683 --> 01:20:57,052
OF RECOMMENDATIONS IN 2023,

2463
01:20:57,052 --> 01:20:58,320
SEPTEMBER, ADVISING THAT HHS

2464
01:20:58,320 --> 01:21:00,589
SHOULD SEEK FUNDING THROUGH THE

2465
01:21:00,589 --> 01:21:04,193
OLDER AMERICANS ACT TITLE V II

2466
01:21:04,193 --> 01:21:06,829
FOR AN OFFICE OF STATE LONG-TERM

2467
01:21:06,829 --> 01:21:09,064
CARE OMBUDSMAN PROGRAM.

2468
01:21:09,064 --> 01:21:12,000
THIS PROGRAM WILL DEVELOP AN

2469
01:21:12,000 --> 01:21:14,336
EMERGENCY PREPAREDNESS TRAINING

2470
01:21:14,336 --> 01:21:16,505
CURRICULUM, PROVIDE SUPPORT

2471
01:21:16,505 --> 01:21:18,607
THROUGH GRANTS, AS WELL AS

2472
01:21:18,607 --> 01:21:20,142
ENCOURAGE REGULARLY SCHEDULED

2473
01:21:20,142 --> 01:21:21,443
PREPARATION MEETINGS AND DRILLS

2474
01:21:21,443 --> 01:21:24,079
RELATED TO LO LONG-TERM CARE

2475
01:21:24,079 --> 01:21:27,916
ADVOCACY.

2476
01:21:27,916 --> 01:21:30,652
HERE ARE ADDITIONAL

2477
01:21:30,652 --> 01:21:31,920
RECOMMENDATIONS RELATED TO

2478
01:21:31,920 --> 01:21:34,690
LONG-TERM CARE.

2479
01:21:34,690 --> 01:21:36,058
GIVE ME A SECOND TO QUICKLY

2480
01:21:36,058 --> 01:21:42,631
REVIEW.

2481
01:21:42,631 --> 01:21:44,366
AND HERE ARE ADDITIONAL

2482
01:21:44,366 --> 01:21:45,801
RECOMMENDATIONS, BUT WE

2483
01:21:45,801 --> 01:21:47,803
DEFINITELY ENCOURAGE YOU TO

2484
01:21:47,803 --> 01:21:51,640
VISIT OUR NACSD.GOV WEBPAGE TO

2485
01:21:51,640 --> 01:21:52,508
REVIEW THE RECOMMENDATIONS IN

2486
01:21:52,508 --> 01:22:01,049
DETAIL.

2487
01:22:01,049 --> 01:22:05,220
AS FOR THE NACIDD, THE

2488
01:22:05,220 --> 01:22:08,390
RECOMMENDATIONS INCLUDED THE

2489
01:22:08,390 --> 01:22:08,857
TIMELY DEVELOPMENT AND

2490
01:22:08,857 --> 01:22:11,326
DISTRIBUTION OF VIDEOS, PRESS

2491
01:22:11,326 --> 01:22:12,995
RELEASES, PRESS CONFERENCES, AND

2492
01:22:12,995 --> 01:22:16,932
ALL OTHER COMMUNICATIONS IN

2493
01:22:16,932 --> 01:22:18,133
AMERICAN SIGN LANGUAGE AND

2494
01:22:18,133 --> 01:22:20,536
REGIONAL OR LOCALLY USED SIGN

2495
01:22:20,536 --> 01:22:22,070
LANGUAGES APPROPRIATE FOR THE

2496
01:22:22,070 --> 01:22:23,972
POPULATIONS AFFECTED BY A PUBLIC

2497
01:22:23,972 --> 01:22:27,576
HEALTH EMERGENCY.

2498
01:22:27,576 --> 01:22:29,578
AS WELL AS JUST IN TIME TRAINING

2499
01:22:29,578 --> 01:22:31,213
FOR ALL PUBLIC HEALTH EMERGENCY

2500
01:22:31,213 --> 01:22:32,815
RESPONDERS.

2501
01:22:32,815 --> 01:22:35,184
AS STATED BEFORE, YOU CAN SEE

2502
01:22:35,184 --> 01:22:37,719
MORE DETAILS AND RECOMMENDATIONS

2503
01:22:37,719 --> 01:22:42,724
FOR THE NACIDD AT ITS WEBSITE,

2504
01:22:42,724 --> 01:22:48,330
THE NACIDD.GOV PUBLIC WEBSITE.

2505
01:22:48,330 --> 01:22:53,135
AND ANY QUESTIONS, WE HAVE A

2506
01:22:53,135 --> 01:22:56,305
RESOURCE MAILBOX FOR THE NACSD,

2507
01:22:56,305 --> 01:23:01,910
IT'S NACSD@HHS.GOV, AND NACIDD,

2508
01:23:01,910 --> 01:23:06,114
IT IS THE NACIDD@HHS.GOV.

2509
01:23:06,114 --> 01:23:07,850
THANK YOU.

2510
01:23:07,850 --> 01:23:10,452
>> THANK YOU SO MUCH.

2511
01:23:10,452 --> 01:23:12,754
AND OUR LAST PRESENTATION IN

2512
01:23:12,754 --> 01:23:14,189
THIS GROUP OF FIWA PRESENTATIONS

2513
01:23:14,189 --> 01:23:18,594
WILL BE BY DR. SHERMAN GILLUMS

2514
01:23:18,594 --> 01:23:19,461
FROM FEMA.

2515
01:23:19,461 --> 01:23:21,330
>> GOOD MORNING, EVERYONE.

2516
01:23:21,330 --> 01:23:22,564
I JUST WANT TO MAKE SURE YOU ALL

2517
01:23:22,564 --> 01:23:23,165
CAN HEAR ME?

2518
01:23:23,165 --> 01:23:24,499
>> YES, WE CAN HEAR YOU.

2519
01:23:24,499 --> 01:23:26,435
>> THUMBS UP?

2520
01:23:26,435 --> 01:23:28,937
THANK YOU.

2521
01:23:28,937 --> 01:23:31,907
WELL, HI, I AM THE FEMA

2522
01:23:31,907 --> 01:23:33,976
DISABILITY COORDINATOR.

2523
01:23:33,976 --> 01:23:36,645
I'M ALSO -- THE OFFICE OF

2524
01:23:36,645 --> 01:23:37,513
DISABILITY INTEGRATION AND

2525
01:23:37,513 --> 01:23:38,614
COORDINATION.

2526
01:23:38,614 --> 01:23:43,719
THESE TWO TITLES EMBODY TWO

2527
01:23:43,719 --> 01:23:45,954
APPROACHES TO DISABILITY

2528
01:23:45,954 --> 01:23:51,193
INTEGRATION THAT -- SINCE 2005,

2529
01:23:51,193 --> 01:24:01,303
WHICH

2530
01:24:17,152 --> 01:24:18,220
THAT'S FINE FOR YOU TO TURN OFF

2531
01:24:18,220 --> 01:24:19,187
YOUR I HAVE YOE IF YOU THINK

2532
01:24:19,187 --> 01:24:23,525
 -- TURN OFF YOURVIDEO IF YOU TL

2533
01:24:23,525 --> 01:24:24,860
MAKE THINGS COME THROUGH A

2534
01:24:24,860 --> 01:24:26,261
LITTLE BIT BETTER.

2535
01:24:26,261 --> 01:24:28,664
I BELIEVE YOU MIGHT BE LOGGING

2536
01:24:28,664 --> 01:24:29,264
BACK IN.

2537
01:24:29,264 --> 01:24:38,740
THERE YOU ARE.

2538
01:24:38,740 --> 01:24:40,742
>> SOUND CHECK --
CONNECTED?

2539
01:24:40,742 --> 01:24:42,778
>> YES, WE'RE CONNECTED
BUT YOUR

2540
01:24:42,778 --> 01:24:45,080
CONNECTION IS A LITTLE BIT

2541
01:24:45,080 --> 01:24:45,380
SHAKY.

2542
01:24:45,380 --> 01:24:46,381
IT IS CUTTING IN AND OUT A

2543
01:24:46,381 --> 01:24:47,616
LITTLE BIT.

2544
01:24:47,616 --> 01:24:48,483
IF YOU MIGHT ABLE TO MOVE A

2545
01:24:48,483 --> 01:24:49,718
LITTLE BIT TO GET BETTER

2546
01:24:49,718 --> 01:24:53,422
RECEPTION.

2547
01:24:53,422 --> 01:24:54,289
>> SURE.

2548
01:24:54,289 --> 01:24:55,824
I'LL TURN MY VIDEO OFF AND MAYBE

2549
01:24:55,824 --> 01:24:57,159
THAT HELPS.

2550
01:24:57,159 --> 01:24:58,460
HOW'S THAT?

2551
01:24:58,460 --> 01:25:00,529
>> I THINK I CAN HEAR YOU

2552
01:25:00,529 --> 01:25:02,931
BETTER.

2553
01:25:02,931 --> 01:25:04,299
GO AHEAD AND WE'LL SEE --

2554
01:25:04,299 --> 01:25:05,834
>> I'LL CONTINUE BUT LET
ME KNOW

2555
01:25:05,834 --> 01:25:09,972
IF YOU -- OKAY.

2556
01:25:09,972 --> 01:25:12,841
AS I WAS SAYING, THE AGENCY TOOK

2557
01:25:12,841 --> 01:25:20,849
A NEW --

2558
01:25:20,849 --> 01:25:27,389
>> WE CAN'T HEAR YOU NOW.

2559
01:25:27,389 --> 01:25:29,491
YES, TECHNOLOGY SOMETIMES

2560
01:25:29,491 --> 01:25:33,028
DOESN'T COOPERATE.

2561
01:25:33,028 --> 01:25:33,862
>> APOLOGIES.

2562
01:25:33,862 --> 01:25:37,799
I'M ACTUALLY OFF SITE,

2563
01:25:37,799 --> 01:25:40,102
DEPLOYMENT TO TEXAS.

2564
01:25:40,102 --> 01:25:45,040
BUT I'M -- [INAUDIBLE]

2565
01:25:45,040 --> 01:25:55,350
PRESENTATION HERE.

2566
01:25:55,851 --> 01:26:01,456
>> THANK YOU --

2567
01:26:01,456 --> 01:26:02,557
[PLEASE STAND BY]

2568
01:26:02,557 --> 01:26:05,327
>> AM I BACK?

2569
01:26:05,327 --> 01:26:08,730
>> CAN YOU TRY DIALING IN
TO

2570
01:26:08,730 --> 01:26:18,840
ZOOM?

2571
01:26:30,752 --> 01:26:35,957
SO AS DR. GILLUMS SAID, HE'S

2572
01:26:35,957 --> 01:26:38,593
DEPLOYED TO TEXAS ASSISTING WITH

2573
01:26:38,593 --> 01:26:40,796
A DISASTER, AND WE REALLY

2574
01:26:40,796 --> 01:26:41,596
APPRECIATE HIM TAKING A MOMENT

2575
01:26:41,596 --> 01:26:42,998
TO TRY TO UPDATE OUR COMMITTEE

2576
01:26:42,998 --> 01:26:44,900
BUT WE'RE HAVING A FEW TECHNICAL

2577
01:26:44,900 --> 01:26:54,242
PROBLEMS.

2578
01:26:54,242 --> 01:26:55,911
IN THE MEANTIME, I SEE THERE'S A

2579
01:26:55,911 --> 01:26:58,647
QUESTION FROM PAUL WANG UNTIL WE

2580
01:26:58,647 --> 01:27:00,482
GET DR. GILLUMS BACK.

2581
01:27:00,482 --> 01:27:01,149
GO AHEAD, PAUL.

2582
01:27:01,149 --> 01:27:02,417
>> THANK YOU.

2583
01:27:02,417 --> 01:27:04,586
JUST TWO QUICK FOLLOW-UPS TO

2584
01:27:04,586 --> 01:27:06,354
LAURA RASKIN RAMOS' PRESENTATION

2585
01:27:06,354 --> 01:27:07,122
FROM HRSA.

2586
01:27:07,122 --> 01:27:09,191
FIRST I WANT TO SELF-IDENTIFY AS

2587
01:27:09,191 --> 01:27:10,659
A LAND ALUM ALONG WITH MANY

2588
01:27:10,659 --> 01:27:11,727
OTHER PEOPLE ON THE COMMITTEE.

2589
01:27:11,727 --> 01:27:12,861
VERY PROUD TO BE ABLE TO SAY

2590
01:27:12,861 --> 01:27:13,829
THAT.

2591
01:27:13,829 --> 01:27:16,364
THE INTERDISCIPLINARY NATURE OF

2592
01:27:16,364 --> 01:27:18,467
LEND TRAINING IS REALLY, REALLY

2593
01:27:18,467 --> 01:27:19,334
IMPORTANT AND HAS IMPORTANT

2594
01:27:19,334 --> 01:27:20,435
IMPACTS, I THINK.

2595
01:27:20,435 --> 01:27:21,870
SECONDLY I JUST WANT TO SAY THE

2596
01:27:21,870 --> 01:27:23,105
SAFE INITIATIVE THAT SHE

2597
01:27:23,105 --> 01:27:24,439
HIGHLIGHTED, I THINK IT'S VERY

2598
01:27:24,439 --> 01:27:27,409
IMPORTANT AND IT WAS ACTUALLY

2599
01:27:27,409 --> 01:27:35,584
NOT ONLY YETTA BUT ALSO MO --

2600
01:27:35,584 --> 01:27:37,252
AND MATT SIEGEL WHO PARTICIPATED

2601
01:27:37,252 --> 01:27:38,120
IN THAT EFFORT.

2602
01:27:38,120 --> 01:27:40,222
WHEN THIS COMMITTEE CONVENES

2603
01:27:40,222 --> 01:27:41,189
AGAIN, I THINK IT WOULD BE A

2604
01:27:41,189 --> 01:27:42,724
GREAT THING TO HIGHLIGHT IN MORE

2605
01:27:42,724 --> 01:27:46,361
DETAIL.

2606
01:27:46,361 --> 01:27:49,731
>> GREAT SUGGESTION AND

2607
01:27:49,731 --> 01:27:50,699
OPPORTUNITY.

2608
01:27:50,699 --> 01:27:51,566
SHERMAN, ARE YOU BACK WITH US?

2609
01:27:51,566 --> 01:27:52,067
>> I AM.

2610
01:27:52,067 --> 01:27:52,901
CAN YOU HEAR ME?

2611
01:27:52,901 --> 01:27:55,270
>> YES.

2612
01:27:55,270 --> 01:27:56,571
>> MY APOLOGIES.

2613
01:27:56,571 --> 01:27:58,907
I'LL TRY TO SPEED US UP AND GET

2614
01:27:58,907 --> 01:27:59,541
BACK ON TRACK HERE.

2615
01:27:59,541 --> 01:28:02,344
>> NO PROBLEM.

2616
01:28:02,344 --> 01:28:04,045
>> THE TWO-PRONGED
APPROACH WAS

2617
01:28:04,045 --> 01:28:05,313
TO HAVE A PERSON WHO WAS GOING

2618
01:28:05,313 --> 01:28:06,681
TO BE CLOSE ENOUGH TO THE

2619
01:28:06,681 --> 01:28:08,450
ADMINISTRATOR TO MAKE SURE WE

2620
01:28:08,450 --> 01:28:09,551
ACCOMMODATE THE NEEDS OF PEOPLE

2621
01:28:09,551 --> 01:28:10,752
WITH DISABILITIES.

2622
01:28:10,752 --> 01:28:12,654
DURING THE PREPAREDNESS PHASE,

2623
01:28:12,654 --> 01:28:13,889
THE PLANNING PHASE OF EMERGENCY

2624
01:28:13,889 --> 01:28:14,823
MANAGEMENT BUT THE DIRECTOR PART

2625
01:28:14,823 --> 01:28:19,294
IS REALLY -- AND IT WASN'T CON

2626
01:28:19,294 --> 01:28:20,662
10 PLATE IN THE LAW BUT THIS

2627
01:28:20,662 --> 01:28:22,097
BECAME THE EMBODIMENT OF WHAT WE

2628
01:28:22,097 --> 01:28:23,532
ACTUALLY DO IN THE FIELD WHICH

2629
01:28:23,532 --> 01:28:24,766
WILL PROBABLY BE OF GREATER

2630
01:28:24,766 --> 01:28:26,268
INTEREST TO THIS INTERAGENCY

2631
01:28:26,268 --> 01:28:28,904
COORDINATING COMMITTEE.

2632
01:28:28,904 --> 01:28:30,238
AND YOU SHOULD SEE A SLIDE THAT

2633
01:28:30,238 --> 01:28:31,540
SAYS GUIDING POLICIES AND

2634
01:28:31,540 --> 01:28:32,641
MISSION TENETS.

2635
01:28:32,641 --> 01:28:34,976
WHEN I ASSUMED THE HELM BACK IN

2636
01:28:34,976 --> 01:28:38,246
AUGUST OF 2022, TWO YEARS AGO

2637
01:28:38,246 --> 01:28:41,283
ALMOST TO THE MONTH, THE FIRST

2638
01:28:41,283 --> 01:28:44,119
POINT OF NOTE WAS THAT WE HAVE A

2639
01:28:44,119 --> 01:28:45,987
STRATEGIC PLAN THAT WAS CRAFTED

2640
01:28:45,987 --> 01:28:51,293
AND IMPLEMENTED IN 2022 TO 2026

2641
01:28:51,293 --> 01:28:52,594
THAT HEAVILY CONSIDERED

2642
01:28:52,594 --> 01:28:53,361
STAKEHOLDER FEEDBACK.

2643
01:28:53,361 --> 01:28:55,163
THERE WAS A LOT OF FEEDBACK

2644
01:28:55,163 --> 01:28:56,898
ABOUT WHERE THE GAPS WERE, WHERE

2645
01:28:56,898 --> 01:28:57,899
NEEDS WEREN'T BEING MET AND

2646
01:28:57,899 --> 01:28:59,534
WE'RE TALKING ABOUT BEFORE,

2647
01:28:59,534 --> 01:29:00,936
DURING AND AFTER DISASTERS.

2648
01:29:00,936 --> 01:29:03,271
A LOT OF TIMES PEOPLE SEE FEMA

2649
01:29:03,271 --> 01:29:04,706
AS A RESPONSE ENTITY, BUT WE

2650
01:29:04,706 --> 01:29:06,575
ALSO DO A LOT OF PLANNING BEFORE

2651
01:29:06,575 --> 01:29:09,311
AND DURING THE DISASTER TO

2652
01:29:09,311 --> 01:29:11,613
ENSURE THAT WE MITIGATE RISKS AS

2653
01:29:11,613 --> 01:29:12,948
DISASTERS ARE UNFOLDING AND

2654
01:29:12,948 --> 01:29:15,250
THAT'S PRETTY IMPORTANT WHEN YOU

2655
01:29:15,250 --> 01:29:17,886
THINK ABOUT THE WAYS THAT

2656
01:29:17,886 --> 01:29:19,087
FAMILIES WHO HAVE A PERSON WITH

2657
01:29:19,087 --> 01:29:21,089
AUTISM OR AN INDIVIDUAL IS

2658
01:29:21,089 --> 01:29:22,824
IMPACTED NOT JUST IN DAILY LIFE

2659
01:29:22,824 --> 01:29:24,793
BUT DURING MOMENTS OF CRISES,

2660
01:29:24,793 --> 01:29:26,361
WHERE A LOT OF CONFUSION SETS IN

2661
01:29:26,361 --> 01:29:27,896
FOR A LOT OF PEOPLE.

2662
01:29:27,896 --> 01:29:30,065
AND THEN AGAIN, I AS A

2663
01:29:30,065 --> 01:29:32,100
DISABILITY COORDINATOR, MY ROLE

2664
01:29:32,100 --> 01:29:34,736
IS ESTABLISHED POST KATRINA,

2665
01:29:34,736 --> 01:29:37,472
EMERGENCY MANAGEMENT FORMAT

2666
01:29:37,472 --> 01:29:39,774
AFTER MANY PEOPLE WITH

2667
01:29:39,774 --> 01:29:41,009
DISABILITIES OR WHO ARE OLDER

2668
01:29:41,009 --> 01:29:42,944
DIED IN THAT DISASTER, I THINK

2669
01:29:42,944 --> 01:29:43,278
ABOUT 80%.

2670
01:29:43,278 --> 01:29:47,382
SO THE CHANCES OF DYING IN A

2671
01:29:47,382 --> 01:29:50,118
DISASTER NOT ONLY HURRICANE

2672
01:29:50,118 --> 01:29:51,519
KATRINA BUT OTHER DISASTERS.

2673
01:29:51,519 --> 01:29:52,721
SO THIS WAS THE ANSWER TO THAT

2674
01:29:52,721 --> 01:29:53,088
PROBLEM.

2675
01:29:53,088 --> 01:29:53,855
THEN OF COURSE MY OFFICE WAS

2676
01:29:53,855 --> 01:29:55,290
ESTABLISHED LATER ON.

2677
01:29:55,290 --> 01:30:00,996
BUT EXECUTIVE ORDER 13985 REALLY

2678
01:30:00,996 --> 01:30:02,297
GAVE US A DIRECTION, A MANDATE

2679
01:30:02,297 --> 01:30:07,235
TO NOT JUST LOOK AT EQUITY AS A

2680
01:30:07,235 --> 01:30:08,303
MISSION ESSENTIAL BUT HOW WE

2681
01:30:08,303 --> 01:30:10,238
MEASURE IT AND HOW WE ACTUALLY

2682
01:30:10,238 --> 01:30:11,306
GIVE EMBODIMENT TO WHAT IT MEANS

2683
01:30:11,306 --> 01:30:13,475
TO BE EQUITABLE IN DISASTER

2684
01:30:13,475 --> 01:30:14,075
RESPONSE.

2685
01:30:14,075 --> 01:30:15,610
THE NEXT SLIDE WILL PROVIDE A

2686
01:30:15,610 --> 01:30:17,779
FRAMEWORK FOR HOW WE DID THAT

2687
01:30:17,779 --> 01:30:19,481
DURING OUR TIME HERE.

2688
01:30:19,481 --> 01:30:22,517
AND ON THE NEXT SLIDE IT'S JUST

2689
01:30:22,517 --> 01:30:24,719
14 POINTS OF INEQUITY IN A

2690
01:30:24,719 --> 01:30:25,353
DISASTER CYCLE.

2691
01:30:25,353 --> 01:30:27,255
I SPENT THE FIRST MAYBE YEAR AND

2692
01:30:27,255 --> 01:30:29,124
A HALF NOT JUST GOING TO

2693
01:30:29,124 --> 01:30:30,425
DISASTERS BUT TALKING TO

2694
01:30:30,425 --> 01:30:31,693
SURVIVORS AND STAKEHOLDERS ABOUT

2695
01:30:31,693 --> 01:30:32,994
WHERE THE COMMON THREADS WERE,

2696
01:30:32,994 --> 01:30:34,529
WHERE THE THREAD WAS THROUGH

2697
01:30:34,529 --> 01:30:36,164
DISASTERS THAT ARE HIGHLY

2698
01:30:36,164 --> 01:30:36,865
VARIABLE.

2699
01:30:36,865 --> 01:30:39,668
A LOT OF VARIABLES DISTINGUISH

2700
01:30:39,668 --> 01:30:41,036
ONE DISASTER FROM ANOTHER.

2701
01:30:41,036 --> 01:30:42,137
BUT WHAT WERE THE THINGS THAT

2702
01:30:42,137 --> 01:30:44,139
KEPT HAPPENING OVER AND OVER AND

2703
01:30:44,139 --> 01:30:45,440
OVER AGAIN TO PEOPLE WITH

2704
01:30:45,440 --> 01:30:47,509
DISABILITIES OR HOW ARE THEY

2705
01:30:47,509 --> 01:30:49,044
IMPACTED DURING WHAT WE CALL THE

2706
01:30:49,044 --> 01:30:49,611
SURVIVOR JOURNEY?

2707
01:30:49,611 --> 01:30:51,112
AND I CAME UP WITH THESE 14

2708
01:30:51,112 --> 01:30:52,580
POINTS WHERE IF WE COULD DO A

2709
01:30:52,580 --> 01:30:54,449
BETTER JOB OF ANTICIPATING THAT

2710
01:30:54,449 --> 01:30:56,885
THIS IS WHERE THE PROBLEMS WILL

2711
01:30:56,885 --> 01:30:58,186
SURFACE, THEN WE COULD DO A

2712
01:30:58,186 --> 01:30:59,788
BETTER JOB OF ASSESSING THE RISK

2713
01:30:59,788 --> 01:31:02,090
AND USING DATA THAT TELLS US HOW

2714
01:31:02,090 --> 01:31:03,458
MANY PEOPLE ARE IN A GIVEN AREA,

2715
01:31:03,458 --> 01:31:05,560
WHAT TYPES OF DISABILITIES THEY

2716
01:31:05,560 --> 01:31:07,128
HAVE, HOW THOSE THINGS FACTOR

2717
01:31:07,128 --> 01:31:08,997
AGAINST THE WAYS IN WHICH

2718
01:31:08,997 --> 01:31:10,398
INEQUITY TENDS TO COME TO THE

2719
01:31:10,398 --> 01:31:11,866
SURFACE IN DISASTERS.

2720
01:31:11,866 --> 01:31:16,004
AND THE FIRST ONE IS REALLY

2721
01:31:16,004 --> 01:31:17,339
PROBABLY THE EASIEST TO FIX BUT

2722
01:31:17,339 --> 01:31:18,640
HARDEST TO IMPLEMENT BECAUSE IT

2723
01:31:18,640 --> 01:31:20,742
RELIES ON STATES AND COUNTIES

2724
01:31:20,742 --> 01:31:24,579
AND LOCALITIES PRIOR TO

2725
01:31:24,579 --> 01:31:25,680
DISASTERS INCLUDING PEOPLE WITH

2726
01:31:25,680 --> 01:31:26,514
DISABILITIES IN THE PLANNING

2727
01:31:26,514 --> 01:31:26,748
PROCESS.

2728
01:31:26,748 --> 01:31:28,650
I SPENT A GREAT DEAL OF TIME

2729
01:31:28,650 --> 01:31:32,821
LAST YEAR WORKING WITH NACDD AND

2730
01:31:32,821 --> 01:31:35,457
OTHER -- THE DV COUNCILS AT THE

2731
01:31:35,457 --> 01:31:36,758
STATE LEVEL TALKING THROUGH WAYS

2732
01:31:36,758 --> 01:31:38,193
WHICH THEY BECOME PART OF THE

2733
01:31:38,193 --> 01:31:39,661
DISASTER PLANNING PROCESS, AND

2734
01:31:39,661 --> 01:31:42,530
IF THEY'RE NOT INVITED, HOW DO

2735
01:31:42,530 --> 01:31:44,733
THEY FIND A SEAT AT THE TABLE,

2736
01:31:44,733 --> 01:31:47,569
WHETHER IT'S THROUGH IMPOSITION

2737
01:31:47,569 --> 01:31:49,270
OR JUST TALKING TO THE RIGHT

2738
01:31:49,270 --> 01:31:50,472
PEOPLE, BUT THEY HAVE TO HAVE A

2739
01:31:50,472 --> 01:31:51,439
SEAT AT THE TABLE TO TALK

2740
01:31:51,439 --> 01:31:52,640
THROUGH THESE ISSUES THAT ARE

2741
01:31:52,640 --> 01:31:54,209
GOING TO COME UP DURING

2742
01:31:54,209 --> 01:31:54,642
DISASTERS.

2743
01:31:54,642 --> 01:31:55,977
AGAIN, WE'RE SEEING THAT RIGHT

2744
01:31:55,977 --> 01:31:57,412
NOW IN TEXAS AND OTHER PLACES

2745
01:31:57,412 --> 01:32:00,181
WHERE WE HAD A TORNADO OUTBREAK

2746
01:32:00,181 --> 01:32:03,017
THROUGHOUT THE MIDWEST AND THE

2747
01:32:03,017 --> 01:32:04,219
WEST, WHERE PEOPLE ARE IMPACTED.

2748
01:32:04,219 --> 01:32:06,221
AND THEY OUGHT TO HAVE A SAY ON

2749
01:32:06,221 --> 01:32:07,522
WHAT THEIR NEEDS ARE PRIOR TO

2750
01:32:07,522 --> 01:32:10,358
THOSE MOMENTS WHEN A LOT OF

2751
01:32:10,358 --> 01:32:12,160
THINGS ARE THROWN INTO CHAOS.

2752
01:32:12,160 --> 01:32:17,198
AND IF YOU FOLLOW THE PRINCIPLES

2753
01:32:17,198 --> 01:32:22,904
POINTS OFINEQUITY, ARE WE CONSIG

2754
01:32:22,904 --> 01:32:24,105
CAREGIVERS IN THAT PROCESS,

2755
01:32:24,105 --> 01:32:25,540
EVACUATION AND TRANSPORTATION,

2756
01:32:25,540 --> 01:32:26,741
SHELTERING, AND I'LL TALK A

2757
01:32:26,741 --> 01:32:28,143
LITTLE BIT ABOUT SOME OF THE

2758
01:32:28,143 --> 01:32:29,878
PRACTICAL WAYS THAT I'VE

2759
01:32:29,878 --> 01:32:35,016
ENCOUNTERED THESE PROBLEMS, BUT

2760
01:32:35,016 --> 01:32:35,784
SHELTERING, TRANSPORTATION,

2761
01:32:35,784 --> 01:32:37,152
ESTABLISHING HOW WE COMMUNICATE

2762
01:32:37,152 --> 01:32:37,786
WITH PEOPLE AND WAYS THEY CAN

2763
01:32:37,786 --> 01:32:38,887
TELL US WHAT THEY NEED.

2764
01:32:38,887 --> 01:32:40,955
SO ALL THESE WAYS ARE WAYS MY

2765
01:32:40,955 --> 01:32:43,158
TEAM BEGINS THE PLANNING

2766
01:32:43,158 --> 01:32:44,492
PROCESS, EITHER PREVIOUS TO

2767
01:32:44,492 --> 01:32:46,327
LANDFALL IF IT'S A HURRICANE, OR

2768
01:32:46,327 --> 01:32:48,696
IF THERE IS A NO-NOTICE

2769
01:32:48,696 --> 01:32:50,098
DISASTER, WHEN IT HAPPENS, WE

2770
01:32:50,098 --> 01:32:51,299
IMMEDIATELY BEGIN TO LOOK AT

2771
01:32:51,299 --> 01:32:52,867
THESE 14 AREAS OF INEQUITY, AND

2772
01:32:52,867 --> 01:32:56,604
THIS IS WHERE, WHEN I TALKED TO

2773
01:32:56,604 --> 01:32:58,173
DV COUNCILS AND OTHER ENTITIES

2774
01:32:58,173 --> 01:32:59,941
THAT DO THE WORK THAT THIS

2775
01:32:59,941 --> 01:33:00,909
INTERAGENCY COUNCIL FOCUSES ON,

2776
01:33:00,909 --> 01:33:02,343
THIS IS WHERE WE TRY TO EDUCATE

2777
01:33:02,343 --> 01:33:03,745
FOLKS ON HOW TO LOOK AT THIS IN

2778
01:33:03,745 --> 01:33:06,648
A WAY THAT ALLOWS THEM TO BE

2779
01:33:06,648 --> 01:33:09,050
PROACTIVE AND SELF SUFFICIENT IN

2780
01:33:09,050 --> 01:33:10,518
MANY WAYS WHEN WE CONTEMPLATE

2781
01:33:10,518 --> 01:33:14,789
HOW BEST TO DO THESE ACTIVITIES.

2782
01:33:14,789 --> 01:33:15,790
IT ALWAYS HELPS WHEN I TALK

2783
01:33:15,790 --> 01:33:17,592
ABOUT WHAT WE DO TO REALLY GET

2784
01:33:17,592 --> 01:33:19,561
INTO THE HUMAN DIMENSIONS OF

2785
01:33:19,561 --> 01:33:20,328
DISASTERS, AND IN THIS CASE

2786
01:33:20,328 --> 01:33:23,198
WE'RE TALKING ABOUT AUTISM.

2787
01:33:23,198 --> 01:33:25,099
THAT PHOTO SHOWS ME AT SANIBEL

2788
01:33:25,099 --> 01:33:27,802
ISLAND AFTER THE HURRICANE,

2789
01:33:27,802 --> 01:33:30,438
HURRICANE IAN WHICH WAS ONE OF

2790
01:33:30,438 --> 01:33:31,906
THE COSTLIEST IN HISTORY HIT

2791
01:33:31,906 --> 01:33:33,308
THAT AREA AND KILLED QUITE A FEW

2792
01:33:33,308 --> 01:33:33,741
PEOPLE.

2793
01:33:33,741 --> 01:33:35,410
AND I'M ALWAYS LOOKING FOR

2794
01:33:35,410 --> 01:33:38,947
EVIDENCE OF A FAMILY, OF WHO WAS

2795
01:33:38,947 --> 01:33:42,217
IMPACTED, WHO ARE THE FACES THAT

2796
01:33:42,217 --> 01:33:44,419
OFTEN BECOME REMOVED AND

2797
01:33:44,419 --> 01:33:47,422
ANONYMIZED BY DISASTERS WHEN

2798
01:33:47,422 --> 01:33:50,592
THEY'RE LUP P LUMPED IN WITH A

2799
01:33:50,592 --> 01:33:51,292
SURVIVOR GROUP.

2800
01:33:51,292 --> 01:33:53,695
BUT THESE ARE REAL CONSEQUENCES

2801
01:33:53,695 --> 01:33:55,463
AND I CITE THREE THAT WERE WITH

2802
01:33:55,463 --> 01:33:57,198
ME DURING HURRICANE IAN.

2803
01:33:57,198 --> 01:33:58,166
THE FIRST WAS A CALL I RECEIVED

2804
01:33:58,166 --> 01:34:01,402
FROM A MOM WHO HAD TWO SONS WHO

2805
01:34:01,402 --> 01:34:02,704
HAVE AUTISM, THEY WERE SHELTERED

2806
01:34:02,704 --> 01:34:04,305
IN HER CAR BECAUSE SHE DIDN'T

2807
01:34:04,305 --> 01:34:06,808
WANT TO BE IN THAT CONJUGATE

2808
01:34:06,808 --> 01:34:08,743
SHELTER SITUATION WHERE PEOPLE

2809
01:34:08,743 --> 01:34:09,811
MIGHT MISUNDERSTAND ANY

2810
01:34:09,811 --> 01:34:10,912
BEHAVIORS OR ANY WAYS THAT HER

2811
01:34:10,912 --> 01:34:13,515
SONS MIGHT REACT TO BEING PUT IN

2812
01:34:13,515 --> 01:34:14,182
THAT SITUATION.

2813
01:34:14,182 --> 01:34:16,284
AND THEN BEING ADULTS, YOU KNOW,

2814
01:34:16,284 --> 01:34:18,152
AT THE SAME TIME.

2815
01:34:18,152 --> 01:34:19,654
SO I CITE THAT BECAUSE THAT WAS

2816
01:34:19,654 --> 01:34:21,656
ONE INSTANCE WHERE WE SHOW HOW

2817
01:34:21,656 --> 01:34:24,425
FAMILIES HAVE TO OFTENTIMES GO

2818
01:34:24,425 --> 01:34:26,728
BEYOND SIMPLY ADAPTING AS

2819
01:34:26,728 --> 01:34:27,929
SURVIVORS BUT ALSO ADAPT TO

2820
01:34:27,929 --> 01:34:28,997
SOCIAL ATTITUDES EVEN IN THE

2821
01:34:28,997 --> 01:34:32,567
MIDST OF A DISASTER, AND WE SEEK

2822
01:34:32,567 --> 01:34:34,202
TO STOP THAT OR DISRUPT THAT BY

2823
01:34:34,202 --> 01:34:36,204
GETTING AHEAD OF THESE BEHAVIORS

2824
01:34:36,204 --> 01:34:38,873
BEFORE DISASTERS HAPPEN.

2825
01:34:38,873 --> 01:34:40,408
ANOTHER STORY WAS A 6-YEAR-OLD

2826
01:34:40,408 --> 01:34:42,143
BOY WHO DROWNED, HIS BROTHER

2827
01:34:42,143 --> 01:34:44,045
ALSO DROWNED IN AN ATTEMPT TO

2828
01:34:44,045 --> 01:34:46,247
SAVE HIM AFTER HE WANDERED OFF

2829
01:34:46,247 --> 01:34:47,749
DURING OR IN THE IMMEDIATE

2830
01:34:47,749 --> 01:34:49,217
AFTERMATH OF HURRICANE IAN.

2831
01:34:49,217 --> 01:34:50,785
I TELL THAT STORY BECAUSE, ONE,

2832
01:34:50,785 --> 01:34:52,086
IT EDUCATES FIRST RESPONDERS ON

2833
01:34:52,086 --> 01:34:55,290
THE NEED TO UNDERSTAND AUTISM,

2834
01:34:55,290 --> 01:34:59,127
AND SOME OF THE COMMONALITIES

2835
01:34:59,127 --> 01:35:00,762
INCLUDE AN ATTRACTION TO WATER

2836
01:35:00,762 --> 01:35:02,564
AND THE TENDENCY TO WANDER OFF.

2837
01:35:02,564 --> 01:35:03,765
AND WE HAVE TO THINK ABOUT THAT

2838
01:35:03,765 --> 01:35:05,333
WHEN WE PUT FAMILIES IN SHELTERS

2839
01:35:05,333 --> 01:35:07,302
AND SETTINGS WHERE WE EXPECT

2840
01:35:07,302 --> 01:35:09,938
THEM TO BE SAFE IN THE

2841
01:35:09,938 --> 01:35:10,939
TRADITIONAL SENSE BUT WE ALSO

2842
01:35:10,939 --> 01:35:12,340
HAVE TO THINK ABOUT AREAS WHERE

2843
01:35:12,340 --> 01:35:14,242
THERE MIGHT BE BODIES OF WATER

2844
01:35:14,242 --> 01:35:18,079
OR WHERE YOU MIGHT BE -- ENABLE

2845
01:35:18,079 --> 01:35:19,280
FAMILIES TO PREVENT WANDERING IN

2846
01:35:19,280 --> 01:35:20,348
A SITUATION WHERE THERE ARE A

2847
01:35:20,348 --> 01:35:21,516
LOT OF PEOPLE HOUSED IN ONE

2848
01:35:21,516 --> 01:35:22,283
AREA.

2849
01:35:22,283 --> 01:35:24,786
AND THEN THE LAST ONE WAS AN

2850
01:35:24,786 --> 01:35:25,620
INSPIRATIONAL STORY.

2851
01:35:25,620 --> 01:35:27,689
THIS WAS A 7-YEAR-OLD BOY WHOSE

2852
01:35:27,689 --> 01:35:30,091
MOM TALKED ABOUT THE WAY HE PUT

2853
01:35:30,091 --> 01:35:35,396
ON A MASK, THE INK MACHINE

2854
01:35:35,396 --> 01:35:35,663
CHARACTER.

2855
01:35:35,663 --> 01:35:37,265
HE PUT ON A MASK DURING THE

2856
01:35:37,265 --> 01:35:38,032
HURRICANE AN BECAUSE OF THAT, HE

2857
01:35:38,032 --> 01:35:39,801
WAS ABLE TO TAKE AND REMOVE

2858
01:35:39,801 --> 01:35:41,135
HIMSELF FROM THE DANGER AND

2859
01:35:41,135 --> 01:35:42,537
UNCERTAINTY BY FEELING LIKE THE

2860
01:35:42,537 --> 01:35:43,871
CHARACTER, THE BENDY CHARACTER.

2861
01:35:43,871 --> 01:35:45,006
AND I THOUGHT THAT WAS

2862
01:35:45,006 --> 01:35:46,007
INTERESTING, BECAUSE AGAIN, IT

2863
01:35:46,007 --> 01:35:47,308
HELPS US BETTER UNDERSTAND WAYS

2864
01:35:47,308 --> 01:35:50,078
IN WHICH WE CAN SUPPORT FAMILIES

2865
01:35:50,078 --> 01:35:51,179
IN THIS CASE THAT WAS UNIQUE TO

2866
01:35:51,179 --> 01:35:52,914
THAT FAMILY, BUT KNOWING AND

2867
01:35:52,914 --> 01:35:53,514
UNDERSTANDING THAT THERE ARE

2868
01:35:53,514 --> 01:35:55,483
WAYS WE CAN HELP KIDS GET

2869
01:35:55,483 --> 01:35:56,918
THROUGH THE UNCERTAINTY OF

2870
01:35:56,918 --> 01:35:59,253
DISASTERS IS HELPFUL FOR US, AS

2871
01:35:59,253 --> 01:35:59,921
FIRST RESPONDERS.

2872
01:35:59,921 --> 01:36:01,656
SO I JUST WANTED TO POINT THOSE

2873
01:36:01,656 --> 01:36:03,725
OUT BECAUSE WE'RE ALWAYS HAVING

2874
01:36:03,725 --> 01:36:04,859
TO REMIND PEOPLE THAT THESE ARE

2875
01:36:04,859 --> 01:36:06,194
NOT STATISTICS OR DATA POINTS,

2876
01:36:06,194 --> 01:36:07,495
THESE ARE HUMAN BEINGS.

2877
01:36:07,495 --> 01:36:08,796
THERE ARE WAYS WE NEED TO

2878
01:36:08,796 --> 01:36:09,297
SUPPORT THEM.

2879
01:36:09,297 --> 01:36:13,134
AND THEN THE LAST SLIDE.

2880
01:36:13,134 --> 01:36:14,669
THE LAST SLIDE SHOWS THE ACTUAL

2881
01:36:14,669 --> 01:36:16,070
EFFORTS WE'VE UNDERTAKEN.

2882
01:36:16,070 --> 01:36:16,904
THERE WAS A COLLABORATION

2883
01:36:16,904 --> 01:36:18,773
BETWEEN THE DISABILITY

2884
01:36:18,773 --> 01:36:20,208
INTEGRATION WORKFORCE IN FEMA

2885
01:36:20,208 --> 01:36:24,245
AND THE AUTISM COMMUNITY IN

2886
01:36:24,245 --> 01:36:26,147
GUAM, WHERE THEY WERE ABLE TO

2887
01:36:26,147 --> 01:36:27,348
COLLABORATE ON MESSAGING AND

2888
01:36:27,348 --> 01:36:28,449
MAKING SURE THAT FAMILIES HAD

2889
01:36:28,449 --> 01:36:32,754
THE MESSAGING AND THE

2890
01:36:32,754 --> 01:36:33,554
INSTRUCTION ON HOW TO GET

2891
01:36:33,554 --> 01:36:34,722
SUPPORT EVEN IF POWER OUTAGES

2892
01:36:34,722 --> 01:36:35,823
WERE HAPPENING.

2893
01:36:35,823 --> 01:36:39,260
THESE WERE RADIO MESSAGES.

2894
01:36:39,260 --> 01:36:43,731
WE ALSO RELEASED IS368A.

2895
01:36:43,731 --> 01:36:45,266
THIS IS FREE OF CHARGE TRAINING

2896
01:36:45,266 --> 01:36:47,402
THAT ANYONE CAN TAKE.

2897
01:36:47,402 --> 01:36:48,836
YOU SIMPLY HAVE TO HAVE AN EMAIL

2898
01:36:48,836 --> 01:36:51,339
ADDRESS AND REGISTER ON THE FEMA

2899
01:36:51,339 --> 01:36:52,473
EMA WEBSITE AND TAKE THIS

2900
01:36:52,473 --> 01:36:52,907
TRAINING.

2901
01:36:52,907 --> 01:36:53,841
WE PROVIDE YOU WITH A LINK TO

2902
01:36:53,841 --> 01:36:55,977
THAT OR YOU CAN GOOGLE THE TITLE

2903
01:36:55,977 --> 01:36:58,112
THERE WILL POP UP, BUT THAT'S

2904
01:36:58,112 --> 01:36:59,414
THE WAY FOR US TO CREATE A

2905
01:36:59,414 --> 01:37:01,716
COMMON LANGUAGE AROUND HOW WE

2906
01:37:01,716 --> 01:37:03,951
ASSIST PEOPLE WITH DISABILITIES

2907
01:37:03,951 --> 01:37:04,619
IN DISASTERS.

2908
01:37:04,619 --> 01:37:06,154
THEN I'M GOING TO BE SPEAKING AT

2909
01:37:06,154 --> 01:37:08,790
THE NACBD CONFERENCE THIS WE'RE

2910
01:37:08,790 --> 01:37:09,290
IN D.C. .

2911
01:37:09,290 --> 01:37:10,591
I SPOKE LAST YEAR AT THE

2912
01:37:10,591 --> 01:37:11,759
CONFERENCE BUT A LOT OF THIS IS

2913
01:37:11,759 --> 01:37:14,762
AROUND HOW WE BRAINSTORM OR

2914
01:37:14,762 --> 01:37:15,663
CO-CREATE WAYS THAT WE COME UP

2915
01:37:15,663 --> 01:37:17,498
WITH SOLUTIONS TO HELPING

2916
01:37:17,498 --> 01:37:20,268
FAMILIES WHO HAVE A LOVED ONE

2917
01:37:20,268 --> 01:37:22,437
WITH AUTISM, HELPING CAREGIVERS

2918
01:37:22,437 --> 01:37:24,605
WHO PROVIDE CARE FOR THEM, COPE

2919
01:37:24,605 --> 01:37:27,842
WITH THE UNCERTAINTY THAT

2920
01:37:27,842 --> 01:37:30,044
DISASTERS OFTEN IMPOSE UPON.

2921
01:37:30,044 --> 01:37:32,980
WITBUT THESE ARE PROACTIVE WAYSE

2922
01:37:32,980 --> 01:37:34,215
SEEK TO BE PART OF THE

2923
01:37:34,215 --> 01:37:35,149
CONVERSATION WITHOUT OVERTAKING

2924
01:37:35,149 --> 01:37:35,550
THE CONVERSATION.

2925
01:37:35,550 --> 01:37:36,951
WHAT I MEAN BY THAT IS WE HAVE

2926
01:37:36,951 --> 01:37:38,219
TO ENABLE FAMILIES AND

2927
01:37:38,219 --> 01:37:41,622
STAKEHOLDERS AND ADVOCATES TO

2928
01:37:41,622 --> 01:37:42,390
LEAD THOSE CONVERSATIONS.

2929
01:37:42,390 --> 01:37:43,357
MY OFFICE HAS BEEN GOOD ABOUT

2930
01:37:43,357 --> 01:37:46,160
MAKING SURE THAT WE UPHOLD

2931
01:37:46,160 --> 01:37:50,398
CO-CREATION OF SOLUTION-MAKING

2932
01:37:50,398 --> 01:37:51,432
AND GENERATION SOLUTIONS AS A

2933
01:37:51,432 --> 01:37:52,967
COMPONENT OF HOW WE SUPPORT THE

2934
01:37:52,967 --> 01:37:53,434
AUTISM COMMUNITY.

2935
01:37:53,434 --> 01:37:55,269
I STOP THERE, I REALIZE I'VE

2936
01:37:55,269 --> 01:37:56,270
TAKEN A LOT OF TIME WITH THE

2937
01:37:56,270 --> 01:37:58,005
TECH DIFFICULTIES, BUT IF THERE

2938
01:37:58,005 --> 01:37:59,073
ARE ANY QUESTIONS, I'LL BE HAPPY

2939
01:37:59,073 --> 01:37:59,941
TO ANSWER THEM.

2940
01:37:59,941 --> 01:38:08,015
>> THANK YOU SO MUCH, DR.
GILL

2941
01:38:08,015 --> 01:38:09,317
DR. GILLUMS.

2942
01:38:09,317 --> 01:38:10,618
DR. GILLUMS ALSO WANT TO SAY

2943
01:38:10,618 --> 01:38:11,152
CONGRATULATIONS AGAIN ON

2944
01:38:11,152 --> 01:38:14,288
RECEIVING THE 2024 PRESIDENTIAL

2945
01:38:14,288 --> 01:38:14,922
LIFETIME ACHIEVEMENT AWARD FROM

2946
01:38:14,922 --> 01:38:16,591
PRESIDENT BIDEN FOR YOUR

2947
01:38:16,591 --> 01:38:16,824
SERVICE.

2948
01:38:16,824 --> 01:38:20,728
AND WE LOOK FORWARD TO HAVING

2949
01:38:20,728 --> 01:38:23,865
MORE PARTICIPATION FROM ASPR AND

2950
01:38:23,865 --> 01:38:26,267
FEMA IN FUTURE IACC AND I'M SURE

2951
01:38:26,267 --> 01:38:28,770
WE'LL BE DOING A SESSION ON

2952
01:38:28,770 --> 01:38:29,570
EMERGENCY PREPAREDNESS AND

2953
01:38:29,570 --> 01:38:30,805
RESPONSE IN THE FUTURE AND

2954
01:38:30,805 --> 01:38:32,673
PERHAPS EXPLORING THAT IN THE

2955
01:38:32,673 --> 01:38:33,107
STRATEGIC PLAN.

2956
01:38:33,107 --> 01:38:34,842
>> THANK YOU SO MUCH.

2957
01:38:34,842 --> 01:38:37,078
>> YOU'RE WELCOME.

2958
01:38:37,078 --> 01:38:39,180
THANK YOU EACH FOR SHARING YOUR

2959
01:38:39,180 --> 01:38:40,715
RECENT INITIATIVES AND PROGRAMS.

2960
01:38:40,715 --> 01:38:43,384
AS YOU ALL HEARD, MANY OF THESE

2961
01:38:43,384 --> 01:38:44,585
INITIATIVES AND PROGRAMS

2962
01:38:44,585 --> 01:38:45,920
DIRECTLY RELATE TO ISSUES THAT

2963
01:38:45,920 --> 01:38:48,022
WE'VE COVERED IN OUR STRATEGIC

2964
01:38:48,022 --> 01:38:49,557
PLAN, INCLUDING THE CAREGIVING

2965
01:38:49,557 --> 01:38:51,993
TOPIC WE'RE GOING TO BE TALKING

2966
01:38:51,993 --> 01:38:52,960
ABOUT TODAY.

2967
01:38:52,960 --> 01:38:54,462
SO WE'RE EXCITED TO SEE THE

2968
01:38:54,462 --> 01:38:57,298
EVOLUTION OF EACH OF THESE

2969
01:38:57,298 --> 01:38:59,801
PROGRAMS AND APPRECIATE YOUR

2970
01:38:59,801 --> 01:39:02,303
PARTICIPATION ON THE IACC, WHICH

2971
01:39:02,303 --> 01:39:03,805
HAS BEEN HELPFUL IN ALL OF THIS

2972
01:39:03,805 --> 01:39:05,773
COORDINATION.

2973
01:39:05,773 --> 01:39:07,642
SO WE HAVE A COUPLE OF MINUTES

2974
01:39:07,642 --> 01:39:09,277
FOR SOME QUESTIONS IF YOU HAVE

2975
01:39:09,277 --> 01:39:10,445
ANY, AND THEN I'LL TRY TO

2976
01:39:10,445 --> 01:39:11,512
TRANSITION US TO OUR BREAK SO

2977
01:39:11,512 --> 01:39:17,652
THAT WE CAN ALL TAKE A BREAK.

2978
01:39:17,652 --> 01:39:17,852
YETTA.

2979
01:39:17,852 --> 01:39:20,688
>> DR. GILLUMS IF YOU'RE
STILL

2980
01:39:20,688 --> 01:39:20,888
ON.

2981
01:39:20,888 --> 01:39:21,989
THANK YOU ALL FOR YOUR

2982
01:39:21,989 --> 01:39:22,523
PRESENTATIONS.

2983
01:39:22,523 --> 01:39:24,125
I THINK IT'S SO IMPORTANT FOR US

2984
01:39:24,125 --> 01:39:25,126
TO UNDERSTAND WHAT'S HAPPENING

2985
01:39:25,126 --> 01:39:28,396
ACROSS ALL THESE AGENCIES.

2986
01:39:28,396 --> 01:39:29,897
DR. GILLUMS, IF YOU'RE STILL ON,

2987
01:39:29,897 --> 01:39:30,965
WANTED TO KNOW MORE ABOUT THE

2988
01:39:30,965 --> 01:39:33,167
WORK THAT YOU DID WITH THE

2989
01:39:33,167 --> 01:39:34,368
PARENTS AND CAREGIVERS IN GUAM

2990
01:39:34,368 --> 01:39:37,939
AND HOW THAT CAME ABOUT, AND HOW

2991
01:39:37,939 --> 01:39:39,473
CAN THIS BE HAPPENING ACROSS THE

2992
01:39:39,473 --> 01:39:41,242
NATION?

2993
01:39:41,242 --> 01:39:41,742
>> THANK YOU.

2994
01:39:41,742 --> 01:39:42,844
I WANT TO MAKE SURE YOU CAN HEAR

2995
01:39:42,844 --> 01:39:43,244
ME.

2996
01:39:43,244 --> 01:39:44,212
CAN YOU HEAR ME OKAY?

2997
01:39:44,212 --> 01:39:46,180
>> YES, I CAN.

2998
01:39:46,180 --> 01:39:48,182
>> I'LL TELL YOU, IT CAME
ABOUT

2999
01:39:48,182 --> 01:39:48,783
PRETTY ORGANICALLY.

3000
01:39:48,783 --> 01:39:52,186
WHAT HAPPENED DURING THE MAUI

3001
01:39:52,186 --> 01:39:54,021
DISASTER, AND A GOOD THING ABOUT

3002
01:39:54,021 --> 01:39:54,822
THESE -- THERE'S NOTHING GREAT

3003
01:39:54,822 --> 01:39:56,190
ABOUT THEM, BUT THE GOOD THING

3004
01:39:56,190 --> 01:39:58,259
ABOUT PRE-NOTICE OR PRE-LANDFALL

3005
01:39:58,259 --> 01:39:59,694
DISASTERS IS WE HAVE A LOT OF

3006
01:39:59,694 --> 01:40:01,963
TIME TO PLAN, AND BECAUSE I HAVE

3007
01:40:01,963 --> 01:40:04,031
BEEN ENGAGING IN NACDD THAT

3008
01:40:04,031 --> 01:40:05,299
SUMMER, IT WAS ALREADY TOP OF

3009
01:40:05,299 --> 01:40:06,100
MIND FOR ME.

3010
01:40:06,100 --> 01:40:09,170
AND I BEGAN TO ASK THE QUESTION

3011
01:40:09,170 --> 01:40:11,005
EARLY ABOUT WHAT ADVOCATES ARE

3012
01:40:11,005 --> 01:40:13,574
ACTIVE ON THE GROUND, AND AUTISM

3013
01:40:13,574 --> 01:40:15,776
SPEAKS CAME UP.

3014
01:40:15,776 --> 01:40:18,512
SO I DIRECTED MY STAFF, WHO WAS

3015
01:40:18,512 --> 01:40:20,014
IN HONOLULU AT THE TIME WAITING

3016
01:40:20,014 --> 01:40:22,116
FOR THE HURRICANE TO PASS, WE

3017
01:40:22,116 --> 01:40:23,084
IMMEDIATELY BEGAN TO CONNECT

3018
01:40:23,084 --> 01:40:24,452
WITH THOSE FOLKS THROUGH THE RED

3019
01:40:24,452 --> 01:40:25,786
CROSS BECAUSE THEY WERE ALREADY

3020
01:40:25,786 --> 01:40:26,554
THERE, AND FIGURE OUT DURING THE

3021
01:40:26,554 --> 01:40:28,823
POWER OUTAGE, SPECIFICALLY WHAT

3022
01:40:28,823 --> 01:40:30,358
CAN WE DO TO MAKE SURE THAT

3023
01:40:30,358 --> 01:40:32,960
THOSE FAMILIES ARE GIVEN

3024
01:40:32,960 --> 01:40:34,595
DIRECTIONS NOT JUST ON WHERE THE

3025
01:40:34,595 --> 01:40:36,163
SHELTERS ARE, BUT WHAT TO EXPECT

3026
01:40:36,163 --> 01:40:37,565
AT THE SHELTERS.

3027
01:40:37,565 --> 01:40:40,601
AND SO WE UNDERTOOK A RADIO

3028
01:40:40,601 --> 01:40:41,802
CAMPAIGN, WE FIGURED THE RADIO

3029
01:40:41,802 --> 01:40:43,604
WAS THE MOST RELIABLE MEANS OF

3030
01:40:43,604 --> 01:40:45,473
GETTING IT OUT BECAUSE INTERNET

3031
01:40:45,473 --> 01:40:47,208
COMMUNICATION WASN'T GOING TO BE

3032
01:40:47,208 --> 01:40:47,475
RELIABLE.

3033
01:40:47,475 --> 01:40:49,710
BUT WE ALSO DEPARTMENT WANT TO

3034
01:40:49,710 --> 01:40:50,912
SIMPLY CREATE MESSAGING AND

3035
01:40:50,912 --> 01:40:51,345
IMPOSE THAT.

3036
01:40:51,345 --> 01:40:53,648
WE WANTED TO HAVE SOME SUBJECT

3037
01:40:53,648 --> 01:40:55,683
MATTER EXPERTISE WEIGH IN ON THE

3038
01:40:55,683 --> 01:40:57,985
BEST WAY NOT JUST BECAUSE OF THE

3039
01:40:57,985 --> 01:40:59,287
UNIQUE NEEDS OF PEOPLE WITH

3040
01:40:59,287 --> 01:41:01,489
AUTISM, BUT ALSO BECAUSE THERE

3041
01:41:01,489 --> 01:41:02,690
WERE LANGUAGE CONCERNS.

3042
01:41:02,690 --> 01:41:03,891
THERE WERE OTHER LANGUAGE AND

3043
01:41:03,891 --> 01:41:04,492
CULTURAL CONCERNS.

3044
01:41:04,492 --> 01:41:06,727
SO WE WANTED TO GET THAT RIGHT.

3045
01:41:06,727 --> 01:41:08,195
SO THERE WAS AN ORGANIC

3046
01:41:08,195 --> 01:41:09,630
CONVERSATION ON WHAT THAT LOOKS

3047
01:41:09,630 --> 01:41:11,499
LIKE SPECIFICALLY FOR FAMILIES

3048
01:41:11,499 --> 01:41:13,134
WITH AUTISM BECAUSE THE

3049
01:41:13,134 --> 01:41:15,403
ADVOCATES WERE ACTIVE THERE.

3050
01:41:15,403 --> 01:41:16,737
AND BECAUSE THEY WERE ACTIVE, WE

3051
01:41:16,737 --> 01:41:18,239
FOUND THEM TO BE A COMMUNICATION

3052
01:41:18,239 --> 01:41:19,674
CHANNEL THAT WE COULD EXPLOIT

3053
01:41:19,674 --> 01:41:22,710
FOR THE GOOD OF SURVIVORS WHO

3054
01:41:22,710 --> 01:41:24,345
PRESENTED CHALLENGES THAT WERE

3055
01:41:24,345 --> 01:41:26,314
UNIQUE TO AUTISM.

3056
01:41:26,314 --> 01:41:27,515
SO THE AVAILABILITY OF PEOPLE

3057
01:41:27,515 --> 01:41:28,883
WHO WERE WILLING TO DO THAT WORK

3058
01:41:28,883 --> 01:41:37,425
ON THE OTHER SIDE MADE IT EASY.

3059
01:41:37,425 --> 01:41:39,226
DOES THAT ANSWER YOUR QUESTION?

3060
01:41:39,226 --> 01:41:39,593
>> YES.

3061
01:41:39,593 --> 01:41:41,762
THANK YOU.

3062
01:41:41,762 --> 01:41:43,431
>> AND WE HAVE A QUESTION
FROM

3063
01:41:43,431 --> 01:41:46,934
DENA GASSNER AND THEN JENNY MAY

3064
01:41:46,934 --> 01:41:48,436
PHAN AND THEN WE'LL WRAP UP.

3065
01:41:48,436 --> 01:41:49,270
>> HI, EVERYBODY.

3066
01:41:49,270 --> 01:41:51,839
THANK YOU SO MUCH FOR BEING

3067
01:41:51,839 --> 01:41:53,140
HERE.

3068
01:41:53,140 --> 01:41:54,775
I HAVE A SMALL CONCERN AND I

3069
01:41:54,775 --> 01:41:56,577
WILL BE FRANK WITH YOU, I'M

3070
01:41:56,577 --> 01:41:58,012
DISSER TATING SO I'M POPPING IN

3071
01:41:58,012 --> 01:41:59,647
AND OUT AND IF I MISS SOMETHING,

3072
01:41:59,647 --> 01:42:01,449
I'M OPEN TO THAT FEEDBACK.

3073
01:42:01,449 --> 01:42:03,351
I HEAR A LOT OF CONVERSATIONS

3074
01:42:03,351 --> 01:42:06,187
ABOUT FAMILIES WHO HAVE KIDS

3075
01:42:06,187 --> 01:42:07,855
WITH AUTISM.

3076
01:42:07,855 --> 01:42:09,624
I DIDN'T HEAR NEARLY ENOUGH

3077
01:42:09,624 --> 01:42:13,294
ABOUT SUPPORTS AND ENGAGEMENT IN

3078
01:42:13,294 --> 01:42:16,831
CO-CREATION WITH AUTISTIC ADU 

3079
01:42:16,831 --> 01:42:19,834
ADULTS.

3080
01:42:19,834 --> 01:42:22,403
IACC IS COMPOSED OF A VARIETY OF

3081
01:42:22,403 --> 01:42:23,404
ROLES AND POSITIONALITIES HERE

3082
01:42:23,404 --> 01:42:24,805
THAT INCLUDES A LOT OF PEOPLE

3083
01:42:24,805 --> 01:42:26,140
WHO ARE AUTISTIC.

3084
01:42:26,140 --> 01:42:29,677
SO TO BE MORE EXPLICIT, IN EARLY

3085
01:42:29,677 --> 01:42:30,344
CHILDHOOD, I DIDN'T HEAR

3086
01:42:30,344 --> 01:42:31,312
ANYTHING ABOUT THE ADDITIONAL

3087
01:42:31,312 --> 01:42:33,681
LEVEL OF SUPPORT THAT IS NEEDED

3088
01:42:33,681 --> 01:42:36,183
FOR A PARENT WHO'S AUTISTIC,

3089
01:42:36,183 --> 01:42:38,052
PARENTING THEIR AUTISTIC CHILD.

3090
01:42:38,052 --> 01:42:40,421
MANY OF WHOM AT THE EARLY

3091
01:42:40,421 --> 01:42:41,522
CHILDHOOD INTERVENTION LEVEL

3092
01:42:41,522 --> 01:42:42,923
DON'T EVEN KNOW THAT THEY

3093
01:42:42,923 --> 01:42:44,025
THEMSELVES ARE ON THE SPECTRUM.

3094
01:42:44,025 --> 01:42:46,327
SO THAT CREATES A WHOLE CAN OF

3095
01:42:46,327 --> 01:42:46,727
WORMS.

3096
01:42:46,727 --> 01:42:52,633
I LIVED IT.

3097
01:42:52,633 --> 01:42:54,268
I ALSO HEARD VERY COMPARABLE

3098
01:42:54,268 --> 01:42:55,703
THINGS FROM FEMA ABOUT

3099
01:42:55,703 --> 01:42:56,971
SUPPORTING AUTISTIC FAMILIES

3100
01:42:56,971 --> 01:42:58,372
INSTEAD OF -- OR IN ADDITION TO

3101
01:42:58,372 --> 01:42:59,907
NEEDING TO SUPPORT AUTISTIC

3102
01:42:59,907 --> 01:43:02,443
ADULTS WHO MAY BE GOING THROUGH

3103
01:43:02,443 --> 01:43:04,245
CRISES.

3104
01:43:04,245 --> 01:43:05,246
AND I'D ALSO LIKE TO KNOW MORE

3105
01:43:05,246 --> 01:43:07,882
ABOUT HOW ALL THE AGENCIES ARE

3106
01:43:07,882 --> 01:43:09,483
DOING CO-CREATION IN THESE

3107
01:43:09,483 --> 01:43:12,119
POLICIES AND PROCEDURES WITH

3108
01:43:12,119 --> 01:43:12,987
AUTISTIC PEOPLE.

3109
01:43:12,987 --> 01:43:15,156
SO I'M TRYING NOT TO BE TOO

3110
01:43:15,156 --> 01:43:16,457
DETAILED BUT I'M TRYING ALSO TO

3111
01:43:16,457 --> 01:43:19,193
GET A BROAD VIEW OF HOW ARE

3112
01:43:19,193 --> 01:43:20,261
AUTISTIC PEOPLE ACTUALLY

3113
01:43:20,261 --> 01:43:21,796
CONTRIBUTING TO THESE POLICIES,

3114
01:43:21,796 --> 01:43:24,432
PROCEDURES AND PROTOCOLS.

3115
01:43:24,432 --> 01:43:25,066
>> THANK YOU.

3116
01:43:25,066 --> 01:43:26,834
AND WE CAN HAVE A FEW BRIEF

3117
01:43:26,834 --> 01:43:28,335
COMMENTS FROM FIWA MEMBERS IF

3118
01:43:28,335 --> 01:43:29,637
YOU'D LIKE TO SAY ANYTHING ABOUT

3119
01:43:29,637 --> 01:43:30,037
THAT.

3120
01:43:30,037 --> 01:43:32,473
OF COURSE WE ASK FOR THESE TO BE

3121
01:43:32,473 --> 01:43:33,808
VERY BRIEF PRESENTATIONS SO

3122
01:43:33,808 --> 01:43:35,509
PEOPLE WEREN'T ABLE TO GO IN

3123
01:43:35,509 --> 01:43:36,710
DEPTH INTO ALL THEIR PROGRAMS,

3124
01:43:36,710 --> 01:43:39,246
BUT IF YOU HAVE ANY BRIEF

3125
01:43:39,246 --> 01:43:40,514
COMMENTS, WELCOME HEARING FROM

3126
01:43:40,514 --> 01:43:46,320
FIWA MEMBERS.

3127
01:43:46,320 --> 01:43:49,123
>> I MEAN, CAN I JUST
SPEAK FOR

3128
01:43:49,123 --> 01:43:51,559
OURSELVES ACROSS ALL OF OUR

3129
01:43:51,559 --> 01:43:53,594
PROGRAMS, ADVOCATES ARE PART OF

3130
01:43:53,594 --> 01:43:55,362
NOT ONLY OUR PEER REVIEW PROCESS

3131
01:43:55,362 --> 01:43:56,831
WHICH, DENA, I THINK YOU WERE A

3132
01:43:56,831 --> 01:43:59,834
PART OF MANY YEARS AGO, BUT ALSO

3133
01:43:59,834 --> 01:44:00,568
OUR PROGRAMMATIC REVIEW PROCESS,

3134
01:44:00,568 --> 01:44:02,369
WE HAVE A SELF-ADVOCATE ON OUR

3135
01:44:02,369 --> 01:44:03,804
PANEL.

3136
01:44:03,804 --> 01:44:05,106
CURRENTLY -- SO SHE'S ABLE TO

3137
01:44:05,106 --> 01:44:07,408
GIVE A LOT OF INSIGHTS THAT

3138
01:44:07,408 --> 01:44:09,343
WASN'T NECESSARILY THERE JUST A

3139
01:44:09,343 --> 01:44:10,211
FEW YEARS BACK.

3140
01:44:10,211 --> 01:44:13,714
SO WE DEFINITELY LEAN ON THE

3141
01:44:13,714 --> 01:44:14,815
AUTISTIC ADULT COMMUNITY,

3142
01:44:14,815 --> 01:44:18,819
PROVIDE THEIR LIVED EXPERIENCES.

3143
01:44:18,819 --> 01:44:19,687
>> THANK YOU.

3144
01:44:19,687 --> 01:44:21,555
YOU ALSO MENTIONED THE

3145
01:44:21,555 --> 01:44:22,957
PARTICIPATION OF AUTISTIC

3146
01:44:22,957 --> 01:44:24,458
RESEARCHERS THAT HAS INCREASED

3147
01:44:24,458 --> 01:44:25,559
RECENTLY, WHICH IS GREAT.

3148
01:44:25,559 --> 01:44:26,594
ALLYSON DEAN HAD A COMMENT.

3149
01:44:26,594 --> 01:44:28,362
>> YEAH, I JUST -- I JUST
WANTED

3150
01:44:28,362 --> 01:44:30,431
TO RESPOND IN TERMS OF THE EARLY

3151
01:44:30,431 --> 01:44:31,866
CHILDHOOD COMMENT.

3152
01:44:31,866 --> 01:44:32,633
AGAIN, FIVE MINUTES, I PICKED

3153
01:44:32,633 --> 01:44:34,368
WHAT I THOUGHT WAS MOST SALIENT,

3154
01:44:34,368 --> 01:44:36,937
BUT WE HAVE JUST RECENTLY

3155
01:44:36,937 --> 01:44:40,875
LAUNCHED AN ENTIRE WEBSITE TO

3156
01:44:40,875 --> 01:44:42,176
SUPPORT ADULTS AND FAMILY

3157
01:44:42,176 --> 01:44:45,780
MEMBERS WITH DISABILITIES, AND

3158
01:44:45,780 --> 01:44:48,082
THE FOCUS OF THAT SITE REALLY IS

3159
01:44:48,082 --> 01:44:50,684
COGNITIVE DISABILITIES, LEARNING

3160
01:44:50,684 --> 01:44:52,653
DIFFERENCES, AUTISM SPECTRUM

3161
01:44:52,653 --> 01:44:53,087
DISORDER.

3162
01:44:53,087 --> 01:44:54,088
SO THAT WOULD BE PROBABLY WHERE

3163
01:44:54,088 --> 01:44:57,091
MOST OF OUR RESOURCES WOULD BE.

3164
01:44:57,091 --> 01:44:58,092
WE ALSO OF COURSE PARTNER

3165
01:44:58,092 --> 01:45:00,628
HEAVILY WITH THE PARENT TRAINING

3166
01:45:00,628 --> 01:45:01,929
INFORMATION CENTERS TO SUPPORT

3167
01:45:01,929 --> 01:45:04,532
FAMILIES WITH DISABILITIES.

3168
01:45:04,532 --> 01:45:06,400
>> THANK YOU, ALLYSON, AND
MAYBE

3169
01:45:06,400 --> 01:45:07,501
WE CAN GET THAT INFORMATION FROM

3170
01:45:07,501 --> 01:45:09,770
YOU AND ADD THEM TO THE ROUND

3171
01:45:09,770 --> 01:45:10,504
ROBIN DOCUMENT AFTER THE

3172
01:45:10,504 --> 01:45:10,871
MEETING.

3173
01:45:10,871 --> 01:45:13,307
>> SURE, ABSOLUTELY.

3174
01:45:13,307 --> 01:45:16,143
>> ALL RIGHT.

3175
01:45:16,143 --> 01:45:17,211
>> QUICK COMMENT.

3176
01:45:17,211 --> 01:45:19,914
A LOT OF MY WORK IS REALLY BEEN

3177
01:45:19,914 --> 01:45:21,682
INTERNALLY FOCUSED ON HOW WE

3178
01:45:21,682 --> 01:45:23,851
EDUCATE FIRST RESPONDERS ON

3179
01:45:23,851 --> 01:45:25,886
ASPECTS OF THE WORK THAT THEY DO

3180
01:45:25,886 --> 01:45:27,321
WHERE THEY MAY INTERACT WITH

3181
01:45:27,321 --> 01:45:27,755
SOMEONE.

3182
01:45:27,755 --> 01:45:30,858
I JUST COMPLETED AN EX-TECIAL EL

3183
01:45:30,858 --> 01:45:34,261
AFFAIRS ACADEMY VIDEO IN

3184
01:45:34,261 --> 01:45:36,997
COLLABORATION WITH NACDD WHERE

3185
01:45:36,997 --> 01:45:38,899
WE TALKED THROUGH HOW WE

3186
01:45:38,899 --> 01:45:42,336
RECOGNIZE THE SIGNS OF AUTISM

3187
01:45:42,336 --> 01:45:43,304
WHERE SOMEBODY MAY NOT BE ABLE

3188
01:45:43,304 --> 01:45:44,405
TO TALK ABOUT THAT, OR IF THEY

3189
01:45:44,405 --> 01:45:46,240
SEE IT FROM AFAR, WAYS THAT THEY

3190
01:45:46,240 --> 01:45:47,541
CAN BETTER UNDERSTAND AND HOW

3191
01:45:47,541 --> 01:45:48,008
THEY HELP.

3192
01:45:48,008 --> 01:45:49,710
SO IT'S REALLY ABOUT EDUCATING

3193
01:45:49,710 --> 01:45:50,578
THE WORKFORCE AND MAKING SURE

3194
01:45:50,578 --> 01:45:52,213
THAT WE UNDERSTAND IT WELL

3195
01:45:52,213 --> 01:45:55,983
ENOUGH TO DO A BETTER JOB.

3196
01:45:55,983 --> 01:45:59,153
WE ALSO DID A PODCAST WITH THE

3197
01:45:59,153 --> 01:46:03,958
FORMER CEO OF NHCBD ROBYN

3198
01:46:03,958 --> 01:46:04,792
TROUTMAN WHERE WE TALKED ABOUT

3199
01:46:04,792 --> 01:46:06,560
THE INTERSECTION OF AUTISM AND

3200
01:46:06,560 --> 01:46:07,761
DISASTERS AND DEVELOP MENTAL

3201
01:46:07,761 --> 01:46:08,862
DISABILITIES BROADLY IN

3202
01:46:08,862 --> 01:46:09,530
DISASTER.

3203
01:46:09,530 --> 01:46:11,098
SO WE'RE CREATING CONTENT THAT

3204
01:46:11,098 --> 01:46:12,199
HOPEFULLY WILL FINDITY WAY INTO

3205
01:46:12,199 --> 01:46:13,000
THE RIGHT HANDS AND MINDS.

3206
01:46:13,000 --> 01:46:13,634
>> THANK YOU.

3207
01:46:13,634 --> 01:46:15,803
NEXT WE'LL HEAR FROM JENNY MAY

3208
01:46:15,803 --> 01:46:16,237
PHAN.

3209
01:46:16,237 --> 01:46:17,304
>> HI, EVERYONE.

3210
01:46:17,304 --> 01:46:20,174
THIS IS JENNY SPEAKING.

3211
01:46:20,174 --> 01:46:21,141
DR. GILLUMS, I'M VERY THANKFUL

3212
01:46:21,141 --> 01:46:21,909
FOR WHAT YOU DO.

3213
01:46:21,909 --> 01:46:25,379
I WAS A FEMA ASSISTANCE

3214
01:46:25,379 --> 01:46:26,580
RECIPIENT DURING HURRICANE

3215
01:46:26,580 --> 01:46:27,715
KATRINA BECAUSE I GREW UP IN NEW

3216
01:46:27,715 --> 01:46:29,850
ORLEANS, SO I ABSOLUTELY SEE THE

3217
01:46:29,850 --> 01:46:30,618
IMPORTANCE OF THE WORK THAT YOU

3218
01:46:30,618 --> 01:46:32,987
DO FOR THE DISABILITY COMMUNITY.

3219
01:46:32,987 --> 01:46:37,691
AND I'M WONDERING, MA BECAUSE WE

3220
01:46:37,691 --> 01:46:39,293
ARE SEEING INCREASE OF TORNADOES

3221
01:46:39,293 --> 01:46:40,628
AND HURRICANES HAPPENING EARLIER

3222
01:46:40,628 --> 01:46:42,596
AND EARLIER EACH YEAR, AND THAT

3223
01:46:42,596 --> 01:46:44,999
THERE ARE FAMILIES AS

3224
01:46:44,999 --> 01:46:46,567
DR. GILLUMS RAISED A FEW CASES

3225
01:46:46,567 --> 01:46:48,235
DURING HIS PRESENTATION THAT

3226
01:46:48,235 --> 01:46:51,739
HAVE VERY UNIQUE SITUATIONS THAT

3227
01:46:51,739 --> 01:46:53,474
THEY'RE NAVIGATING AND NEED

3228
01:46:53,474 --> 01:46:55,542
FURTHER SUPPORTS AND ASSISTANCE

3229
01:46:55,542 --> 01:46:58,612
THAT THE IACC COULD PERHAPS

3230
01:46:58,612 --> 01:46:59,580
MAYBE DEVELOP A WORKING GROUP

3231
01:46:59,580 --> 01:47:04,318
WITH FEMA TO ADDRESS THE

3232
01:47:04,318 --> 01:47:06,987
CONCERNS THAT COULD BE

3233
01:47:06,987 --> 01:47:08,856
APPROACHING AND GROW IN THE

3234
01:47:08,856 --> 01:47:09,356
FUTURE.

3235
01:47:09,356 --> 01:47:13,093
I HAVE SEEN THINGS IMPROVE IN

3236
01:47:13,093 --> 01:47:15,162
TERMS OF FEMA SUPPORT FOR

3237
01:47:15,162 --> 01:47:16,230
FAMILIES WITH DISABILITIES, BUT

3238
01:47:16,230 --> 01:47:17,331
I THINK THERE'S GOING TO

3239
01:47:17,331 --> 01:47:20,901
PROBABLY BE INCREASE IN DEMANDS.

3240
01:47:20,901 --> 01:47:21,969
DR. GILLUMS, MAYBE YOU CAN SPEAK

3241
01:47:21,969 --> 01:47:22,870
TO THIS WITH ALL THE

3242
01:47:22,870 --> 01:47:24,738
MOBILIZATION YOU'RE DOING RIGHT

3243
01:47:24,738 --> 01:47:25,172
NOW IN 2024.

3244
01:47:25,172 --> 01:47:28,075
ARE YOU SEEING THESE INCREASES

3245
01:47:28,075 --> 01:47:29,209
HAPPEN AND THAT THERE ARE HIGHER

3246
01:47:29,209 --> 01:47:31,178
DEMANDS OF SUPPORT REQUESTS FROM

3247
01:47:31,178 --> 01:47:31,845
THESE FAMILIES, FROM AUTISM

3248
01:47:31,845 --> 01:47:34,148
FAMILIES?

3249
01:47:34,148 --> 01:47:36,717
>> THAT DATA POINT HASN'T
BORNE

3250
01:47:36,717 --> 01:47:39,019
ITSELF OUT IN MY WORK.

3251
01:47:39,019 --> 01:47:40,988
IT'S MORE THESE ISOLATED CASES.

3252
01:47:40,988 --> 01:47:42,690
I RELY ON STAKEHOLDERS,

3253
01:47:42,690 --> 01:47:43,590
COMMUNITY STAKEHOLDERS TO BRING

3254
01:47:43,590 --> 01:47:44,558
THAT TO ME, THOUGH.

3255
01:47:44,558 --> 01:47:46,226
WE NEVER KNOW WHERE DISASTERS

3256
01:47:46,226 --> 01:47:47,061
ARE GOING TO HAPPEN.

3257
01:47:47,061 --> 01:47:48,262
AND IF IT HAPPENS IN A PLACE

3258
01:47:48,262 --> 01:47:50,230
WHERE THERE'S A SIGNIFICANT

3259
01:47:50,230 --> 01:47:52,700
REPRESENTATION OF FAMILIES OR

3260
01:47:52,700 --> 01:47:54,234
INDIVIDUALS WHO LIVE WITH

3261
01:47:54,234 --> 01:47:56,537
AUTISM, THEN IT'S EASY BECAUSE

3262
01:47:56,537 --> 01:47:59,206
THEY'RE ALREADY AGGREGATED, BUT

3263
01:47:59,206 --> 01:48:01,008
IN PARTS OF TEXAS RIGHT NOW

3264
01:48:01,008 --> 01:48:02,076
WHERE TORNADOES WERE BATTERING

3265
01:48:02,076 --> 01:48:03,177
THE AREA AND NOW WE HAVE A

3266
01:48:03,177 --> 01:48:06,447
HURRICANE THAT MAY DO MORE

3267
01:48:06,447 --> 01:48:07,748
DAMAGE, IT'S HARD BECAUSE I NEED

3268
01:48:07,748 --> 01:48:09,917
THE ADVOCATES TO SURFACE.

3269
01:48:09,917 --> 01:48:12,986
AND A LOT OF THIS IS IDEALLY

3270
01:48:12,986 --> 01:48:14,154
ESTABLISHED BEFORE DISASTERS.

3271
01:48:14,154 --> 01:48:15,055
ONE OF THE THINGS I TALK ABOUT

3272
01:48:15,055 --> 01:48:16,457
IS THE NEED TO HAVE

3273
01:48:16,457 --> 01:48:19,259
ACCOUNTABILITY AT THE STATE

3274
01:48:19,259 --> 01:48:20,160
LEVEL, WHO'S OVERSEEING

3275
01:48:20,160 --> 01:48:21,695
DISABILITY COORDINATION ON THE

3276
01:48:21,695 --> 01:48:22,162
STATE SIDE?

3277
01:48:22,162 --> 01:48:24,198
SO I CAN BEGIN THAT CONVERSATION

3278
01:48:24,198 --> 01:48:24,798
QUICKLY.

3279
01:48:24,798 --> 01:48:25,699
THAT'S OFTEN THE GAP.

3280
01:48:25,699 --> 01:48:28,135
MAYBE THAT'S WHERE THE

3281
01:48:28,135 --> 01:48:31,839
INTERAGENCY COMMITTEE CAN HELP

3282
01:48:31,839 --> 01:48:33,173
ME SOCIALIZE THE IDEA OF HAVING

3283
01:48:33,173 --> 01:48:35,209
EVERY STATE HAVE A PERSON THAT'S

3284
01:48:35,209 --> 01:48:37,511
EITHER MY COUNTERPART, SOMEBODY

3285
01:48:37,511 --> 01:48:39,046
WHO'S RESPONSIBLE TO THE

3286
01:48:39,046 --> 01:48:39,713
EXECUTIVE LEADERSHIP IN THE

3287
01:48:39,713 --> 01:48:40,114
STATE.

3288
01:48:40,114 --> 01:48:42,116
AND ALSO WHERE DOES THIS SHOW UP

3289
01:48:42,116 --> 01:48:43,717
IN THE STATE'S DISASTER PLAN?

3290
01:48:43,717 --> 01:48:46,887
I'D LOVE TO COME UP WITH MODEL

3291
01:48:46,887 --> 01:48:48,389
EMERGENCY MANAGEMENT POLICIES

3292
01:48:48,389 --> 01:48:51,225
THAT CONTEMPLATE THE NEEDS OF

3293
01:48:51,225 --> 01:48:53,427
THOSE WITH LIVED EXPERIENCE WITH

3294
01:48:53,427 --> 01:48:53,761
AUTISM.

3295
01:48:53,761 --> 01:48:55,462
AND WE CAN ATTACH THOSE TO ANY

3296
01:48:55,462 --> 01:48:55,796
STATE.

3297
01:48:55,796 --> 01:48:57,231
THE NEEDS ARE NOT THAT MUCH

3298
01:48:57,231 --> 01:48:57,564
DIFFERENT.

3299
01:48:57,564 --> 01:48:59,299
IT'S THE CONTEXT THAT DIFFERS.

3300
01:48:59,299 --> 01:49:01,568
BUT I DO HAVE IDEAS ON HOW WE

3301
01:49:01,568 --> 01:49:03,871
CAN SCALE, AND I'D LOVE TO HAVE

3302
01:49:03,871 --> 01:49:08,275
THAT CONVERSATION AT ANY POINT.

3303
01:49:08,275 --> 01:49:09,009
>> THANK YOU.

3304
01:49:09,009 --> 01:49:10,411
AND THANK YOU AGAIN FOR GIVING

3305
01:49:10,411 --> 01:49:11,845
US THIS OPPORTUNITY TO SHARE

3306
01:49:11,845 --> 01:49:14,448
SOME OF THE WORK AMONG FEMA

3307
01:49:14,448 --> 01:49:16,950
MEMBERS AND HOPEFULLY YOU'LL

3308
01:49:16,950 --> 01:49:17,951
FEEL CONFIDENT THAT THE FIWA

3309
01:49:17,951 --> 01:49:19,686
WILL CONSTANTLY BE MEETING EVEN

3310
01:49:19,686 --> 01:49:20,821
WHEN THE IACC IS OUT OF SESSION

3311
01:49:20,821 --> 01:49:24,458
AND CONTINUING TO COORDINATE ON

3312
01:49:24,458 --> 01:49:28,729
BEHALF OF AUTISTIC FAMILIES,

3313
01:49:28,729 --> 01:49:30,364
INDIVIDUALS, AND WORKING WITH

3314
01:49:30,364 --> 01:49:31,131
THE COMMUNITY.

3315
01:49:31,131 --> 01:49:32,866
THANK YOU SO MUCH, AND WE'LL

3316
01:49:32,866 --> 01:49:35,736
TAKE A BREAK NOW AND RECONVENE

3317
01:49:35,736 --> 01:49:37,037
AT 12:05, AND I'LL JUST TRY TO

3318
01:49:37,037 --> 01:49:38,539
KEEP THE NEXT SESSION ON MY PART

3319
01:49:38,539 --> 01:49:40,107
A LITTLE SHORTER SO THAT YOU CAN

3320
01:49:40,107 --> 01:49:40,641
HAVE THIS BREAK.

3321
01:49:40,641 --> 01:49:41,942
THANK YOU SO MUCH.

3322
01:49:42,576 --> 01:49:43,544
SO I'LL GET STARTED.

3323
01:49:43,544 --> 01:49:44,545
I THINK PEOPLE WILL BE WALKING

3324
01:49:44,545 --> 01:49:45,312
INTO THE ROOM HERE.

3325
01:49:45,312 --> 01:49:46,914
WE'RE GOING TO GET STARTED ON

3326
01:49:46,914 --> 01:49:48,482
COMMITTEE BUSINESS.

3327
01:49:48,482 --> 01:49:53,520
IS OH SO SHELLSO SHELLI AND I WE

3328
01:49:53,520 --> 01:49:54,822
COLLABORATING ON THIS TO BRING

3329
01:49:54,822 --> 01:49:56,023
YOU ALL OUR UPDATES.

3330
01:49:56,023 --> 01:49:57,558
IN THE OVERVIEW, WE'RE GOING TO

3331
01:49:57,558 --> 01:49:59,860
BE TALKING ABOUT IACC

3332
01:49:59,860 --> 01:50:00,861
ACCOMPLISHMENTS AND THIS IS THE

3333
01:50:00,861 --> 01:50:02,262
LAST MEETING AND WE WANT TO

3334
01:50:02,262 --> 01:50:03,997
RECOGNIZE ALL THAT THE IACC HAS

3335
01:50:03,997 --> 01:50:05,199
MANAGED TO DO IN THE PAST FEW

3336
01:50:05,199 --> 01:50:05,799
YEARS.

3337
01:50:05,799 --> 01:50:08,368
ALSO OUR CLOSEOUT PLANNING FOR

3338
01:50:08,368 --> 01:50:09,803
THE COMMITTEE, INCLUDING

3339
01:50:09,803 --> 01:50:11,738
COMPLETION OF PENDING REPORTS.

3340
01:50:11,738 --> 01:50:14,174
AND THE 2024 IACC SUMMARY OF

3341
01:50:14,174 --> 01:50:17,644
ADVANCES DISCUSSION.

3342
01:50:17,644 --> 01:50:19,880
SO I'M GOING TO START WITH

3343
01:50:19,880 --> 01:50:22,950
SAYING THANK YOU TO IACC MEMBERS

3344
01:50:22,950 --> 01:50:24,918
AND ALTERNATES WHO'VE SERVED

3345
01:50:24,918 --> 01:50:25,886
BETWEEN 2021 TO 2024.

3346
01:50:25,886 --> 01:50:27,120
IT YOU CAN BELIEVE THIS, THERE

3347
01:50:27,120 --> 01:50:28,322
HAVE BEEN 80 DIFFERENT

3348
01:50:28,322 --> 01:50:29,723
INDIVIDUALS WHO HAVE SERVED IN

3349
01:50:29,723 --> 01:50:31,592
VARIOUS CAPACITIES WITH THE IACC

3350
01:50:31,592 --> 01:50:33,894
AS MEMBERS OR ALTERNATES, AND WE

3351
01:50:33,894 --> 01:50:35,963
GOT THEM ALL ON THIS SLIDE

3352
01:50:35,963 --> 01:50:38,432
TOGETHER, AND IT'S A WONDERFUL

3353
01:50:38,432 --> 01:50:40,033
DIVERSE GROUP, MANY DIFFERENT

3354
01:50:40,033 --> 01:50:41,335
PERSPECTIVES AND POINTS OF VIEW.

3355
01:50:41,335 --> 01:50:43,203
MANY DIFFERENT FEDERAL AGENCIES

3356
01:50:43,203 --> 01:50:45,038
AND DEPARTMENTS REPRESENTED AND

3357
01:50:45,038 --> 01:50:46,940
IT WAS THE LARGEST AND MOST

3358
01:50:46,940 --> 01:50:48,342
DIVERSE GROUP TO DATE.

3359
01:50:48,342 --> 01:50:50,544
AND WE'RE REALLY VERY GRATEFUL

3360
01:50:50,544 --> 01:50:52,379
TO ALL OF YOU, AND SHELLI, YOU

3361
01:50:52,379 --> 01:50:53,313
MAY ALSO WANT TO SAY SOMETHING

3362
01:50:53,313 --> 01:50:56,683
ABOUT THIS.

3363
01:50:56,683 --> 01:50:59,720
>> I JUST WANT TO
ACKNOWLEDGE

3364
01:50:59,720 --> 01:51:01,488
THE AMOUNT OF TIME AND EFFORT

3365
01:51:01,488 --> 01:51:04,424
THAT SO MANY INDIVIDUALS HAVE

3366
01:51:04,424 --> 01:51:06,727
CONTRIBUTED TO THIS COMMITTEE,

3367
01:51:06,727 --> 01:51:09,997
AND I THINK THIS IS A GREAT

3368
01:51:09,997 --> 01:51:11,231
OPPORTUNITY TO NOT JUST THANK

3369
01:51:11,231 --> 01:51:13,066
PEOPLE BUT FOR ALL OF US TO

3370
01:51:13,066 --> 01:51:14,668
REFLECT AND FEEL GOOD ABOUT THE

3371
01:51:14,668 --> 01:51:16,169
THINGS WE'VE ACCOMPLISHED OVER

3372
01:51:16,169 --> 01:51:17,804
THE LAST FEW YEARS.

3373
01:51:17,804 --> 01:51:18,939
THANKS, SUSAN.

3374
01:51:18,939 --> 01:51:20,107
>> THANK YOU.

3375
01:51:20,107 --> 01:51:21,642
YES, THANK YOU FOR YOUR SERVICE

3376
01:51:21,642 --> 01:51:22,809
TO THE COMMUNITY, TO THE

3377
01:51:22,809 --> 01:51:25,345
SECRETARY OF HEAL HEALTH AND HUN

3378
01:51:25,345 --> 01:51:26,813
SERVICES, AND TO ALL THE FEDERAL

3379
01:51:26,813 --> 01:51:27,781
AGENCIES FOR PROVIDING YOUR

3380
01:51:27,781 --> 01:51:30,083
INPUT ON A REGULAR BASIS IN THE

3381
01:51:30,083 --> 01:51:32,819
COMMITTEE, AND TO MEMBERS OF THE

3382
01:51:32,819 --> 01:51:34,688
PUBLIC WHO REGULARLY ATTEND OUR

3383
01:51:34,688 --> 01:51:35,689
MEETINGS, PROVIDE PUBLIC

3384
01:51:35,689 --> 01:51:38,659
COMMENTS, RESPOND TO OUR RFIs,

3385
01:51:38,659 --> 01:51:40,093
GIVE US COMMENTS ON OUR

3386
01:51:40,093 --> 01:51:40,360
DOCUMENTS.

3387
01:51:40,360 --> 01:51:42,262
WE REALLY APPRECIATE ALL OF YOUR

3388
01:51:42,262 --> 01:51:44,231
INPUT AND HAVE CONTINUED TO

3389
01:51:44,231 --> 01:51:47,935
STRIVE TO REFLECT THE

3390
01:51:47,935 --> 01:51:48,936
COMMUNITY'S INPUT INTO OUR

3391
01:51:48,936 --> 01:51:49,469
DOCUMENTS.

3392
01:51:49,469 --> 01:51:52,339
SO THANK YOU SO MUCH.

3393
01:51:52,339 --> 01:51:54,074
I ALSO WANT TO POINT OUT SOME

3394
01:51:54,074 --> 01:51:56,176
SPECIFIC ACCOMPLISHMENTS.

3395
01:51:56,176 --> 01:51:57,477
WE'VE HAD 11 FULL COMMITTEE

3396
01:51:57,477 --> 01:52:00,414
MEETINGS SINCE STARTING UP IN

3397
01:52:00,414 --> 01:52:01,982
2020-21, AND WE ALSO HAVE HAD

3398
01:52:01,982 --> 01:52:03,050
ONE WORKING GROUP MEETING

3399
01:52:03,050 --> 01:52:05,452
FOCUSED ON THE STRATEGIC PLAN,

3400
01:52:05,452 --> 01:52:07,654
AND SEVERAL DIFFERENT IMPORTANT

3401
01:52:07,654 --> 01:52:10,057
AUTISM-RELEVANT TOPICS DISCUSSED

3402
01:52:10,057 --> 01:52:12,259
INCLUDING HOUSING,

3403
01:52:12,259 --> 01:52:14,761
COMMUNICATION, MENTAL HEALTH,

3404
01:52:14,761 --> 01:52:16,430
EMPLOYMENT, NEEDS ACROSS THE

3405
01:52:16,430 --> 01:52:20,567
ENTIRE SPECTRUM, AGING, SOCIAL

3406
01:52:20,567 --> 01:52:22,970
SECURITY, PREVALENCE AND

3407
01:52:22,970 --> 01:52:24,705
EPIDEMIOLOGY, RACIAL AND ETHNIC

3408
01:52:24,705 --> 01:52:26,373
DISPARITIES AND EQUITY, JUSTICE

3409
01:52:26,373 --> 01:52:28,675
AND LAW ENFORCEMENT ISSUES,

3410
01:52:28,675 --> 01:52:32,145
INTERNATIONAL ACTIVITIES,

3411
01:52:32,145 --> 01:52:35,248
WANDERING, COVID-19 IMPACTS,

3412
01:52:35,248 --> 01:52:36,450
SUPPORTIVE SERVICES, AND TODAY

3413
01:52:36,450 --> 01:52:38,085
WE'RE GOING TO BE TALKING ABOUT

3414
01:52:38,085 --> 01:52:38,986
FAMILY CAREGIVING.

3415
01:52:38,986 --> 01:52:42,322
SO WE'VE COVERED A LOT OF GROUND

3416
01:52:42,322 --> 01:52:43,857
AND THE IACC STRATEGIC PLAN

3417
01:52:43,857 --> 01:52:46,593
REFLECTS THESE AND MORE TOPICS.

3418
01:52:46,593 --> 01:52:48,895
WE ALSO AS A COMMITTEE HAVE

3419
01:52:48,895 --> 01:52:50,530
COMPLETED SIX DIFFERENT REPORTS,

3420
01:52:50,530 --> 01:52:54,034
INCLUDING A BRAND NEW STRATEGIC

3421
01:52:54,034 --> 01:52:55,202
PLAN, THREE ISSUES OF THE

3422
01:52:55,202 --> 01:52:57,337
SUMMARY OF ADVANCES IN AUTISM

3423
01:52:57,337 --> 01:52:59,506
RESEARCH, AND TWO PORTFOLIO

3424
01:52:59,506 --> 01:53:00,273
ANALYSIS REPORTS.

3425
01:53:00,273 --> 01:53:01,942
AND WE CURRENTLY HAVE A

3426
01:53:01,942 --> 01:53:03,577
STRATEGIC PLAN UPDATE

3427
01:53:03,577 --> 01:53:05,879
ONCO-OCCURRING CONDITIONS THAT'S

3428
01:53:05,879 --> 01:53:08,849
PENDING, AN EDITION OF THE

3429
01:53:08,849 --> 01:53:10,484
SUMMARY OF ADVANCES THAT'S

3430
01:53:10,484 --> 01:53:11,551
PENDING AND A PORTFOLIO ANALYSIS

3431
01:53:11,551 --> 01:53:12,152
THAT'S PENDING.

3432
01:53:12,152 --> 01:53:13,887
AND ANOTHER ISSUE OF THE SUMMARY

3433
01:53:13,887 --> 01:53:15,522
OF ADVANCES AS WELL THAT WE'LL

3434
01:53:15,522 --> 01:53:16,623
BE TRYING TO PUT OUT.

3435
01:53:16,623 --> 01:53:17,691
SO THANK YOU FOR ALL OF YOUR

3436
01:53:17,691 --> 01:53:20,027
HARD WORK AND CONTRIBUTIONS TO

3437
01:53:20,027 --> 01:53:21,895
THESE DIFFERENT REPORTS.

3438
01:53:21,895 --> 01:53:22,929
TO EVERY PERSON ON THE COMMITTEE

3439
01:53:22,929 --> 01:53:25,599
AND TO THE PUBLIC FOR RESPONDING

3440
01:53:25,599 --> 01:53:27,134
TO RFIs TO HELP INFORM SOME OF

3441
01:53:27,134 --> 01:53:32,272
THESE DOCUMENTS.

3442
01:53:32,272 --> 01:53:33,940
SO TO GIVE YOU AN UPDATE ON THE

3443
01:53:33,940 --> 01:53:35,308
AUTISM CARES ACT, IT'S GOING TO

3444
01:53:35,308 --> 01:53:38,979
BE SUNSETTING ON SEPTEMBER 30TH,

3445
01:53:38,979 --> 01:53:39,179
2024.

3446
01:53:39,179 --> 01:53:40,380
AND THAT WILL END THE

3447
01:53:40,380 --> 01:53:42,015
AUTHORIZATION FOR THIS

3448
01:53:42,015 --> 01:53:42,282
COMMITTEE.

3449
01:53:42,282 --> 01:53:44,918
HOWEVER, WE ALSO KNOW THAT

3450
01:53:44,918 --> 01:53:47,421
CONGRESS IS WORKING VERY HARD ON

3451
01:53:47,421 --> 01:53:48,955
RE-AUTHORIZING THE CARES ACT AND

3452
01:53:48,955 --> 01:53:50,557
WHEN THAT RE-AUTHORIZATION

3453
01:53:50,557 --> 01:53:53,427
HOPEFULLY GOES THROUGH, THEN THE

3454
01:53:53,427 --> 01:53:56,263
IACC WILL BE CONTINUING ITS

3455
01:53:56,263 --> 01:53:58,899
WORK, AND WE WILL BE SEATING A

3456
01:53:58,899 --> 01:53:59,433
NEW COMMITTEE.

3457
01:53:59,433 --> 01:54:01,134
SO THE DRAFT LEGISLATION HAS

3458
01:54:01,134 --> 01:54:03,270
BEEN RE-AUTHORIZED -- TO

3459
01:54:03,270 --> 01:54:04,671
RE-AUTHORIZE THE IACC HAS BEEN

3460
01:54:04,671 --> 01:54:05,939
INTRODUCED IN CONGRESS AND WE

3461
01:54:05,939 --> 01:54:07,307
PROVIDED THE BILL THERE, AND THE

3462
01:54:07,307 --> 01:54:10,610
SENATE IS WORKING ON THEIR BILL.

3463
01:54:10,610 --> 01:54:13,447
AND HHS WILL BEGIN THE PROCESS

3464
01:54:13,447 --> 01:54:15,082
TO SOLICIT NOMINATIONS FOR NEW

3465
01:54:15,082 --> 01:54:17,050
PUBLIC MEMBERS ONCE WE HAVE

3466
01:54:17,050 --> 01:54:20,587
RECEIVED THAT RE-AUTHORIZATION,

3467
01:54:20,587 --> 01:54:22,689
AND ONAC WILL WORK WITH THE

3468
01:54:22,689 --> 01:54:23,523
OFFICE OF THE SECRETARY TO PUT

3469
01:54:23,523 --> 01:54:24,658
OUT A SOLICITATION.

3470
01:54:24,658 --> 01:54:26,159
IT WILL GO IN THE FEDERAL

3471
01:54:26,159 --> 01:54:28,061
REGISTER AND WE'LL SEND OUT

3472
01:54:28,061 --> 01:54:31,331
EMAILS, PUT IT ON TWITTER, OR X,

3473
01:54:31,331 --> 01:54:32,966
WE'LL PUT IT ON OUR WEBSITE, SO

3474
01:54:32,966 --> 01:54:34,701
YOU WILL HEAR ABOUT IT.

3475
01:54:34,701 --> 01:54:36,937
AND MEMBERS OF THE COMMITTEE

3476
01:54:36,937 --> 01:54:37,804
CURRENTLY PUBLIC MEMBERS WHO

3477
01:54:37,804 --> 01:54:39,106
HAVE ONLY SERVED ONE TERM WOULD

3478
01:54:39,106 --> 01:54:40,907
BE ELIGIBLE FOR RE-NOMINATION,

3479
01:54:40,907 --> 01:54:42,709
AND WE ALSO WILL WELCOME

3480
01:54:42,709 --> 01:54:44,911
NOMINATIONS FROM ACROSS THE

3481
01:54:44,911 --> 01:54:45,445
ENTIRE AUTISM COMMUNITY.

3482
01:54:45,445 --> 01:54:47,714
SO BE LOOKING FOR THAT MOST

3483
01:54:47,714 --> 01:54:49,516
LIKELY SOMETIME IN

3484
01:54:49,516 --> 01:54:51,918
OCTOBER/NOVEMBER.

3485
01:54:51,918 --> 01:54:54,087
AND WE JUST WELCOME AS MANY

3486
01:54:54,087 --> 01:54:55,989
PEOPLE PUTTING IN NOMINATIONS AS

3487
01:54:55,989 --> 01:54:58,592
WOULD LIKE TO SERVE.

3488
01:54:58,592 --> 01:55:01,128
IT'S A REALLY VALUED EXPERIENCE

3489
01:55:01,128 --> 01:55:02,763
BEING ABLE TO SERVE AND PROVIDE

3490
01:55:02,763 --> 01:55:04,297
YOUR INPUT TO THIS COMMITTEE IN

3491
01:55:04,297 --> 01:55:06,266
THAT WAY, AND WE'VE APPRECIATED

3492
01:55:06,266 --> 01:55:07,801
EVERYONE HERE AND LOOK FORWARD

3493
01:55:07,801 --> 01:55:08,869
TO THE NEW COMMITTEE IN THE

3494
01:55:08,869 --> 01:55:13,373
FUTURE.

3495
01:55:13,373 --> 01:55:14,407
ALICE CARTER HAS A QUESTION.

3496
01:55:14,407 --> 01:55:15,542
>> I HAVE A COMMENT, I
JUST WANT

3497
01:55:15,542 --> 01:55:17,410
TO THANK YOU, SUSAN, FOR YOUR

3498
01:55:17,410 --> 01:55:18,411
LEADERSHIP AND FOR MAKING

3499
01:55:18,411 --> 01:55:19,613
SERVING ON THIS COMMITTEE REALLY

3500
01:55:19,613 --> 01:55:22,749
A PLEASURE.

3501
01:55:22,749 --> 01:55:23,683
I HAVE BEEN PRESENT ONLY DURING

3502
01:55:23,683 --> 01:55:24,985
THE TIME FRAME YOU'RE TALKING

3503
01:55:24,985 --> 01:55:26,586
ABOUT, AND I JUST REALLY WANT TO

3504
01:55:26,586 --> 01:55:28,455
THANK YOU FOR WONDERFUL

3505
01:55:28,455 --> 01:55:30,023
LEADERSHIP AND LEADERSHIP MAKES

3506
01:55:30,023 --> 01:55:30,924
A HUGE DIFFERENCE.

3507
01:55:30,924 --> 01:55:32,459
>> THANK YOU SO MUCH,
ALICE.

3508
01:55:32,459 --> 01:55:35,729
AND I HAVE TO THANK THE ONAC

3509
01:55:35,729 --> 01:55:38,165
TEAM AND OUR CONTRACTOR, ROSALY

3510
01:55:38,165 --> 01:55:40,400
AND ASSOCIATES, AND THE NIH

3511
01:55:40,400 --> 01:55:41,535
CENTER FOR INFORMATION

3512
01:55:41,535 --> 01:55:42,736
TECHNOLOGY THAT ALSO HAVE BEEN

3513
01:55:42,736 --> 01:55:44,704
REALLY SUPPORTIVE IN TRYING TO

3514
01:55:44,704 --> 01:55:46,306
MAKE THESE MEETINGS GO SMOOTHLY

3515
01:55:46,306 --> 01:55:48,542
AND WE'VE ALL LEARNED TOGETHER

3516
01:55:48,542 --> 01:55:49,342
ON INCREASING ACCESSIBILITY.

3517
01:55:49,342 --> 01:55:52,846
I THINK WE'VE ACTUALLY REALLY

3518
01:55:52,846 --> 01:55:54,147
MADE SOME IMPORTANT STEPS IN

3519
01:55:54,147 --> 01:55:54,815
INCREASING THE ACCESSIBILITY OF

3520
01:55:54,815 --> 01:55:56,116
OUR MEETINGS AND WE APPRECIATE

3521
01:55:56,116 --> 01:55:58,118
ALL THE FEEDBACK AND CONTINUE TO

3522
01:55:58,118 --> 01:56:00,320
TRY TO IMPROVE AND INCORPORATE

3523
01:56:00,320 --> 01:56:02,722
YOUR SUGGESTIONS.

3524
01:56:02,722 --> 01:56:04,791
SO WE WILL BE CONTINUING TO DO

3525
01:56:04,791 --> 01:56:07,327
THAT AND WELCOME FEEDBACK, BUT

3526
01:56:07,327 --> 01:56:08,862
THANK YOU SO MUCH FOR THAT.

3527
01:56:08,862 --> 01:56:09,062
DENA.

3528
01:56:09,062 --> 01:56:10,497
>> I JUST WANTED TO SPEAK

3529
01:56:10,497 --> 01:56:13,133
SPECIFICALLY TO THE

3530
01:56:13,133 --> 01:56:13,500
ACCOMMODATIONS.

3531
01:56:13,500 --> 01:56:18,405
YOU KNOW, WE HAVE MORE

3532
01:56:18,405 --> 01:56:19,606
INDIVIDUALS IDENTIFYING AS

3533
01:56:19,606 --> 01:56:21,675
DISABLED ON THE COMMITTEE THAN

3534
01:56:21,675 --> 01:56:26,613
EVER BEFORE, AND ACCOMMODATING

3535
01:56:26,613 --> 01:56:29,649
THAT MANY WAYS OF COMMUNICATING,

3536
01:56:29,649 --> 01:56:31,318
I KNOW HAS NOT BEEN AN EASY

3537
01:56:31,318 --> 01:56:36,022
LIFT, BUT I JUST WANT TO

3538
01:56:36,022 --> 01:56:38,859
CHAMPION THE SUPPORT STAFF, THE

3539
01:56:38,859 --> 01:56:41,161
CONTRACTORS AND YOU, SUSAN, FOR

3540
01:56:41,161 --> 01:56:44,664
LISTENING WITH AN OPEN MIND AND

3541
01:56:44,664 --> 01:56:46,233
EXPEDITIOUSLY TRYING TO ADDRESS

3542
01:56:46,233 --> 01:56:47,734
ANY VOIDS IN TERMS OF

3543
01:56:47,734 --> 01:56:49,603
ACCOMMODATION AND SUPPORT THAT

3544
01:56:49,603 --> 01:56:51,705
HAVE MADE ATTENDING IACC AS BOTH

3545
01:56:51,705 --> 01:56:53,874
A MEMBER AND A COMMITTEE MEMBER

3546
01:56:53,874 --> 01:56:56,610
AND AS PUBLIC MEMBERS SO MUCH

3547
01:56:56,610 --> 01:56:57,611
MORE ACCESSIBLE THAN IT'S EVER

3548
01:56:57,611 --> 01:56:58,044
BEEN BEFORE.

3549
01:56:58,044 --> 01:56:59,679
SO I JUST WANTED TO GIVE YOU

3550
01:56:59,679 --> 01:57:01,414
KUDOS FOR THAT, ALL OF YOU.

3551
01:57:01,414 --> 01:57:03,016
THANK YOU.

3552
01:57:03,016 --> 01:57:04,084
>> THANK YOU SO MUCH.

3553
01:57:04,084 --> 01:57:05,085
AND THANK YOU EACH FOR YOUR

3554
01:57:05,085 --> 01:57:06,152
INPUT ON THAT.

3555
01:57:06,152 --> 01:57:07,921
WE'LL CONTINUE TRYING TO MAKE IT

3556
01:57:07,921 --> 01:57:10,390
MORE ACCESSIBLE OVER TIME.

3557
01:57:10,390 --> 01:57:11,458
SAM.

3558
01:57:11,458 --> 01:57:13,760
>> I ALSO WANTED TO GIVE
KUDOS

3559
01:57:13,760 --> 01:57:14,761
AND AS ONE OF THE PEOPLE WHO

3560
01:57:14,761 --> 01:57:17,931
WILL PROBABLY BE CYCLING OFF

3561
01:57:17,931 --> 01:57:19,599
BECAUSE I'M NOW APPROACHING THE

3562
01:57:19,599 --> 01:57:21,234
END OF MY SECOND TERM, I JUST

3563
01:57:21,234 --> 01:57:27,007
WANTED TO SAY HOW FAR THE IACC

3564
01:57:27,007 --> 01:57:27,774
HAS COME SINCE I STARTED.

3565
01:57:27,774 --> 01:57:32,045
WE STARTED WITH THREE MEMBERS

3566
01:57:32,045 --> 01:57:33,480
WHO ARE AUTISTIC, NOW IT'S CLOSE

3567
01:57:33,480 --> 01:57:35,115
TO A THIRD.

3568
01:57:35,115 --> 01:57:37,851
I WISH THAT WE COULD HAVE HAD

3569
01:57:37,851 --> 01:57:40,086
MORE IN-PERSON MEETINGS BEFORE I

3570
01:57:40,086 --> 01:57:42,355
CYCLED OFF BECAUSE IT'S SO GREAT

3571
01:57:42,355 --> 01:57:46,092
TO SEE HOW -- YOU KNOW, THERE'S

3572
01:57:46,092 --> 01:57:47,294
SEVERAL OTHER AUTISTIC PEOPLE IN

3573
01:57:47,294 --> 01:57:49,796
THE ROOM, AND IT'S A REALLY

3574
01:57:49,796 --> 01:57:55,835
FUNDI NA MIBGFUNDYNAMIC THAT'S N

3575
01:57:55,835 --> 01:57:58,872
WE WERE TRYING TO DO THIS BY

3576
01:57:58,872 --> 01:58:01,207
ZOOM ONLY, NOW THAT IT HYBRID.

3577
01:58:01,207 --> 01:58:02,575
BUT I REALLY HOPE THAT THIS

3578
01:58:02,575 --> 01:58:02,876
CONTINUES.

3579
01:58:02,876 --> 01:58:08,548
I HOPE THAT, YOU KNOW, THIS NEW

3580
01:58:08,548 --> 01:58:11,918
IACC WITH SO MANY NEW VOICES, SO

3581
01:58:11,918 --> 01:58:14,654
MANY DIFFERENT PEOPLE AS PUBLIC

3582
01:58:14,654 --> 01:58:15,855
MEMBERS, CAN BE MAINTAINED IN

3583
01:58:15,855 --> 01:58:19,492
THE NEXT CYCLE, AND I LOOK

3584
01:58:19,492 --> 01:58:22,796
FORWARD TO JOINING YOU ALL OVER

3585
01:58:22,796 --> 01:58:22,996
THERE.

3586
01:58:22,996 --> 01:58:24,297
>> THANK YOU, SAM, AND WE
HOPE

3587
01:58:24,297 --> 01:58:25,498
THAT YOU WILL COME BACK TO

3588
01:58:25,498 --> 01:58:25,932
MEETINGS.

3589
01:58:25,932 --> 01:58:27,500
THANK YOU BOTH TO JULIE TAYLOR

3590
01:58:27,500 --> 01:58:31,404
AND SAM CRANE FOR TWO TERMS OF

3591
01:58:31,404 --> 01:58:32,305
SERVICE ON THE IACC.

3592
01:58:32,305 --> 01:58:33,974
SO YOU'VE ALL BEEN WITH US SINCE

3593
01:58:33,974 --> 01:58:36,610
THE AUTISM CARES ACT OF 2014.

3594
01:58:36,610 --> 01:58:38,912
AND IT'S BEEN A LONG TIME, AND

3595
01:58:38,912 --> 01:58:41,214
WE ALL HAVE GROWN THROUGH THIS

3596
01:58:41,214 --> 01:58:42,315
PERIOD AND WE REALLY APPRECIATE

3597
01:58:42,315 --> 01:58:44,317
ALL OF YOUR MANY CONTRIBUTIONS

3598
01:58:44,317 --> 01:58:47,053
TO THE COMMITTEE AND LOOK

3599
01:58:47,053 --> 01:58:48,688
FORWARD TO CONTINUING TO EVOLVE

3600
01:58:48,688 --> 01:58:52,525
TOGETHER.

3601
01:58:52,525 --> 01:58:53,960
ANY OTHER COMMENTS BEFORE WE

3602
01:58:53,960 --> 01:58:56,696
MOVE FORWARD?

3603
01:58:56,696 --> 01:58:59,132
OH, IVANOVA.

3604
01:58:59,132 --> 01:59:01,301
>> THIS IS IVANOVA.

3605
01:59:01,301 --> 01:59:04,037
I'M JUST VERY HONORED TO HAVE

3606
01:59:04,037 --> 01:59:06,039
BEEN -- ALLOWED TO BE ON THE

3607
01:59:06,039 --> 01:59:08,141
IACC, AND I'M ALSO VERY THANKFUL

3608
01:59:08,141 --> 01:59:11,511
FOR ALL OF THE ACCOMMODATIONS

3609
01:59:11,511 --> 01:59:12,812
AND SUPPORTS THAT THE IACC HAS

3610
01:59:12,812 --> 01:59:13,780
GIVEN ME.

3611
01:59:13,780 --> 01:59:15,982
IT WAS KIND OF SCARY, TRYING TO

3612
01:59:15,982 --> 01:59:20,053
GET ON TO THE IACC, AND I REALLY

3613
01:59:20,053 --> 01:59:22,455
APPRECIATE THAT EVERYBODY REALLY

3614
01:59:22,455 --> 01:59:25,625
SUPPORTED ME WITH THE ONBOARDING

3615
01:59:25,625 --> 01:59:28,495
PROCESS AND SUPPORTED ME WITH

3616
01:59:28,495 --> 01:59:30,130
ALL THOSE LIKE LOGISTICAL

3617
01:59:30,130 --> 01:59:31,464
PAPERWORK THINGS THAT ARE REALLY

3618
01:59:31,464 --> 01:59:35,502
HARD FOR ME AS A PERSON WITH

3619
01:59:35,502 --> 01:59:36,269
INTELLECTUAL DISABILITIES, SO I

3620
01:59:36,269 --> 01:59:37,370
REALLY APPRECIATE ALL THAT

3621
01:59:37,370 --> 01:59:38,905
SUPPORT, AND I'VE BEEN REALLY

3622
01:59:38,905 --> 01:59:40,540
ENJOYING BEING ON THE IACC.

3623
01:59:40,540 --> 01:59:42,475
SO THANK YOU UC.

3624
01:59:42,475 --> 01:59:46,046
>> THANK YOU SO MUCH,
IVANOVA.

3625
01:59:46,046 --> 01:59:47,947
WELL, WE HAVE REALLY ENJOYED

3626
01:59:47,947 --> 01:59:49,816
WORKING TOGETHER, AND I LOOK

3627
01:59:49,816 --> 01:59:52,552
FORWARD TO US ALL KEEPING IN

3628
01:59:52,552 --> 01:59:52,852
TOUCH.

3629
01:59:52,852 --> 01:59:55,722
AND TO THE NEW ITERATION OF THE

3630
01:59:55,722 --> 01:59:56,823
COMMITTEE IN THE FUTURE, SO

3631
01:59:56,823 --> 01:59:57,924
WE'LL KEEP YOU POSTED ON NEW

3632
01:59:57,924 --> 02:00:00,593
DEVELOPMENTS IN THAT REGARD.

3633
02:00:00,593 --> 02:00:02,695
SO THE PLANS GOING FORWARD FROM

3634
02:00:02,695 --> 02:00:05,865
NOW ARE THAT IF WE DO GET THE

3635
02:00:05,865 --> 02:00:08,601
RE-AUTHORIZATION, OUR PLAN WOULD

3636
02:00:08,601 --> 02:00:09,903
BE AT THE TIME OF

3637
02:00:09,903 --> 02:00:11,237
SEPTEMBER 30TH, IF WE HAVE A

3638
02:00:11,237 --> 02:00:12,005
RE-AUTHORIZATION IN PLACE, THAT

3639
02:00:12,005 --> 02:00:15,075
WE WOULD EXTEND MEMBER TERMS FOR

3640
02:00:15,075 --> 02:00:16,609
180 DAYS, ONLY TO COMPLETE OLD

3641
02:00:16,609 --> 02:00:18,478
BUSINESS SO WE WILL NOT HOLD NEW

3642
02:00:18,478 --> 02:00:20,013
FULL COMMITTEE MEETINGS AND TAKE

3643
02:00:20,013 --> 02:00:21,981
UP NEW ISSUES, BUT WE HAVE A FEW

3644
02:00:21,981 --> 02:00:25,185
PROJECTS TO FINISH, SO WE WILL

3645
02:00:25,185 --> 02:00:27,253
WORK TO COMPLETE THE 2023 IACC

3646
02:00:27,253 --> 02:00:28,688
SUMMARY OF ADVANCES, WHICH

3647
02:00:28,688 --> 02:00:29,789
ACTUALLY IS ALMOST COMPLETE NOW

3648
02:00:29,789 --> 02:00:30,990
AND WE'LL TALK ABOUT THAT IN A

3649
02:00:30,990 --> 02:00:31,891
FEW MINUTES.

3650
02:00:31,891 --> 02:00:33,226
WE ALSO WILL COMPLETE THIS

3651
02:00:33,226 --> 02:00:34,861
CO-OCCURRING CONDITIONS UPDATE

3652
02:00:34,861 --> 02:00:36,563
OF THE STRATEGIC PLAN AND WE

3653
02:00:36,563 --> 02:00:37,530
DON'T WANT TO GIVE THAT TO THE

3654
02:00:37,530 --> 02:00:38,498
NEXT COMMITTEE BECAUSE THE

3655
02:00:38,498 --> 02:00:39,499
PREVIOUS COMMITTEE GAVE THAT TO

3656
02:00:39,499 --> 02:00:41,167
US, AND THANK YOU, JULIE TAYLOR,

3657
02:00:41,167 --> 02:00:42,802
FOR YOUR LEADERSHIP WITH THAT.

3658
02:00:42,802 --> 02:00:44,337
AND WE ARE DETERMINED TO GET

3659
02:00:44,337 --> 02:00:45,338
THIS DONE.

3660
02:00:45,338 --> 02:00:46,673
SO WE'LL TALK ABOUT THAT IN A

3661
02:00:46,673 --> 02:00:47,774
FEW MINUTES AS WELL.

3662
02:00:47,774 --> 02:00:50,276
AND THE 2024 IACC SUMMARY OF

3663
02:00:50,276 --> 02:00:51,244
ADVANCES.

3664
02:00:51,244 --> 02:00:52,812
SO THOSE WILL BE OUR GOALS, AND

3665
02:00:52,812 --> 02:00:54,547
WE'LL ACCOMPLISH SOME OF THIS BY

3666
02:00:54,547 --> 02:00:57,517
AFTER THIS MEETING, IF WE NEED

3667
02:00:57,517 --> 02:00:59,285
ADDITIONAL SHORT ZOOM MEETINGS

3668
02:00:59,285 --> 02:01:01,054
TO TALK WITH THE COMMITTEE, WE

3669
02:01:01,054 --> 02:01:02,455
MAY CONVENE THOSE AND WE'LL TELL

3670
02:01:02,455 --> 02:01:04,791
YOU A LITTLE MORE ABOUT THAT.

3671
02:01:04,791 --> 02:01:06,459
BUT YOU WILL BE HEARING ABOUT

3672
02:01:06,459 --> 02:01:08,962
THOSE TERM EXTENSIONS FROM THE

3673
02:01:08,962 --> 02:01:11,464
OFFICE WHEN THAT COMES UP ONCE

3674
02:01:11,464 --> 02:01:13,032
THERE'S A RE-AUTHORIZATION IN

3675
02:01:13,032 --> 02:01:14,334
PLACE.

3676
02:01:14,334 --> 02:01:17,737
AND OUR POST 2024 -- OR POST

3677
02:01:17,737 --> 02:01:18,938
JULY 2024 ACTIVITIES WILL

3678
02:01:18,938 --> 02:01:20,807
CONSIST OF -- WE'LL BE SENDING

3679
02:01:20,807 --> 02:01:22,242
YOU EMAILS MAYBE ASKING YOU TO

3680
02:01:22,242 --> 02:01:23,776
RESPOND TO SURVEYS AND SETTING

3681
02:01:23,776 --> 02:01:26,646
UP SOME SMALLER ZOOM MEETINGS,

3682
02:01:26,646 --> 02:01:28,948
JUST TO TAKE IN INPUT SO THAT WE

3683
02:01:28,948 --> 02:01:32,552
CAN COMPLETE PROJECTS.

3684
02:01:32,552 --> 02:01:34,921
AND NEXT I'LL SHARE WITH YOU THE

3685
02:01:34,921 --> 02:01:36,623
2023 IACC SUMMARY OF ADVANCES

3686
02:01:36,623 --> 02:01:38,057
UPDATE.

3687
02:01:38,057 --> 02:01:41,227
SO O NAC HAS PREPARED THE DRAFT

3688
02:01:41,227 --> 02:01:42,762
REPORT AND IACC MEMBERS WILL

3689
02:01:42,762 --> 02:01:44,964
RECEIVE THE DRAFT REPORT FOR

3690
02:01:44,964 --> 02:01:46,266
PREVIEW AND COMMENT VERY SOON,

3691
02:01:46,266 --> 02:01:48,134
SO WE'LL BE SENDING THAT OUT FOR

3692
02:01:48,134 --> 02:01:49,669
YOU, AND BEN WILL PREPARE THE

3693
02:01:49,669 --> 02:01:50,870
FINAL REPORT ONCE WE'VE RECEIVED

3694
02:01:50,870 --> 02:01:52,539
ANY FEEDBACK FROM YOU, AND

3695
02:01:52,539 --> 02:01:57,043
HOPEFULLY PUBLISH THIS SUMMER.

3696
02:01:57,043 --> 02:01:58,344
ONE ISSUE HAS COME UP WITH THIS.

3697
02:01:58,344 --> 02:02:00,146
ONE OF THE ARTICLES THAT THE

3698
02:02:00,146 --> 02:02:01,080
COMMITTEE SELECTED, THE AUTHOR

3699
02:02:01,080 --> 02:02:02,282
GOT IN TOUCH WITH US AND

3700
02:02:02,282 --> 02:02:03,583
ACTUALLY TOLD US THAT THERE WERE

3701
02:02:03,583 --> 02:02:04,884
TWO ARTICLES THAT THEY PUT

3702
02:02:04,884 --> 02:02:08,121
FORWARD THAT WERE BACK TO BACK

3703
02:02:08,121 --> 02:02:09,756
PUBLISHED ARTICLES, THEY'RE BOTH

3704
02:02:09,756 --> 02:02:13,493
NAMED THERE, THAT ARE PART OF A

3705
02:02:13,493 --> 02:02:14,260
PACKAGE THAT WAS IMPORTANT AND

3706
02:02:14,260 --> 02:02:15,895
THEY SAID THAT THEY WOULD LIKE

3707
02:02:15,895 --> 02:02:20,099
TO SEE BOTH ARTICLES AK

3708
02:02:20,099 --> 02:02:20,867
ACKNOWLEDGED, SO I WANTED TO ASK

3709
02:02:20,867 --> 02:02:22,769
YOU IF YOU ARE COMFORTABLE WITH

3710
02:02:22,769 --> 02:02:24,537
ACKNOWLEDGING BOTH IN THE SAME

3711
02:02:24,537 --> 02:02:25,638
ADVANCE, AND WE HAVE HAD

3712
02:02:25,638 --> 02:02:27,173
PRECEDENT TO DO THIS BEFORE,

3713
02:02:27,173 --> 02:02:29,475
WHERE, SAY, THERE WERE COMPANION

3714
02:02:29,475 --> 02:02:32,345
PAPERS, SO THESE ARE COMPANION

3715
02:02:32,345 --> 02:02:33,546
PAPERS IN THE SAME ISSUE OF

3716
02:02:33,546 --> 02:02:39,986
JAMA.

3717
02:02:39,986 --> 02:02:41,020
IF ANYONE HAS ANY QUESTIONS

3718
02:02:41,020 --> 02:02:42,121
ABOUT THAT, MORE THAN THAT, WHAT

3719
02:02:42,121 --> 02:02:43,756
WE WANTED TO ASK YOU IS IF YOU

3720
02:02:43,756 --> 02:02:44,958
HAVE ANY CONCERNS ABOUT US JUST

3721
02:02:44,958 --> 02:02:46,392
ADJUSTING THAT SUMMARY TO

3722
02:02:46,392 --> 02:02:49,929
ACKNOWLEDGE BOTH PAPERS

3723
02:02:49,929 --> 02:02:50,196
TOGETHER.

3724
02:02:50,196 --> 02:02:52,465
>> SO JUST TO CLARIFY, THE

3725
02:02:52,465 --> 02:02:54,100
SECOND ARTICLE WAS NOT

3726
02:02:54,100 --> 02:02:54,467
NOMINATED?

3727
02:02:54,467 --> 02:02:55,902
WE DIDN'T VOTE THE SECOND

3728
02:02:55,902 --> 02:02:56,302
ARTICLE DOWN?

3729
02:02:56,302 --> 02:02:57,870
>> SO WHAT HAPPENED
ACTUALLY AT

3730
02:02:57,870 --> 02:03:00,573
A PREVIOUS MEETING, BOTH OF THE

3731
02:03:00,573 --> 02:03:01,741
ARTICLES WERE NOMINATED AND AT

3732
02:03:01,741 --> 02:03:03,676
THE TIME I DON'T THINK WE WERE

3733
02:03:03,676 --> 02:03:04,677
COMPLETELY REALIZING THESE WERE

3734
02:03:04,677 --> 02:03:07,447
IN A BACK TO BACK PUBLICATION,

3735
02:03:07,447 --> 02:03:09,849
AND SO DR. GORDON ASKED, CAN WE

3736
02:03:09,849 --> 02:03:11,050
JUST CHOOSE ONE OF THEM AND WE

3737
02:03:11,050 --> 02:03:12,518
DID, AND WE CHOSE ONE OF THEM,

3738
02:03:12,518 --> 02:03:13,953
BUT THEN NOW THE AUTHOR HAS SAID

3739
02:03:13,953 --> 02:03:15,788
WELL, IT'S A LITTLE AWKWARD FOR

3740
02:03:15,788 --> 02:03:17,490
US TO MAYBE ACKNOWLEDGE ONE

3741
02:03:17,490 --> 02:03:18,057
WITHOUT THE OTHER BECAUSE

3742
02:03:18,057 --> 02:03:20,059
ACTUALLY THEY WERE BOTH IN A

3743
02:03:20,059 --> 02:03:21,761
PART OF AN FDA PACKAGE FOR

3744
02:03:21,761 --> 02:03:24,764
LOOKING AT THAT INTERVENTION.

3745
02:03:24,764 --> 02:03:26,165
SO THEY SAID THAT IT WOULD MAKE

3746
02:03:26,165 --> 02:03:27,834
MORE SENSE FOR US TO TRY TO

3747
02:03:27,834 --> 02:03:28,501
ACKNOWLEDGE BOTH AT THE SAME

3748
02:03:28,501 --> 02:03:29,002
TIME.

3749
02:03:29,002 --> 02:03:31,471
AND SO THAT'S SOME NEW

3750
02:03:31,471 --> 02:03:32,338
INFORMATION WE GOT THAT WE

3751
02:03:32,338 --> 02:03:33,439
DIDN'T HAVE AT THE TIME.

3752
02:03:33,439 --> 02:03:34,974
>> QUICK FOLLOW-UP, THIS
WILL

3753
02:03:34,974 --> 02:03:36,876
NOT KNOCK ANOTHER ARTICLE OFF,

3754
02:03:36,876 --> 02:03:37,677
THEY WOULD BE TOGETHER?

3755
02:03:37,677 --> 02:03:40,146
>> NO, THEY WOULD JUST BE

3756
02:03:40,146 --> 02:03:40,647
TOGETHER.

3757
02:03:40,647 --> 02:03:42,015
SO IT WON'T CHANGE ANYTHING IN

3758
02:03:42,015 --> 02:03:43,983
TERMS OF -- THERE'S STILL 20

3759
02:03:43,983 --> 02:03:45,118
DIFFERENT ARTICLES THAT YOU ALL

3760
02:03:45,118 --> 02:03:46,753
VOTED ON, AND YOU'LL SEE WHEN WE

3761
02:03:46,753 --> 02:03:50,390
SEND THAT OUT, AND SO I JUST

3762
02:03:50,390 --> 02:03:52,492
WANTED TO MAKE SURE THE

3763
02:03:52,492 --> 02:03:55,094
COMMITTEE IS OKAY WITH THIS, SO

3764
02:03:55,094 --> 02:03:57,030
I'D ASK YOU -- AND DO WE HAVE A

3765
02:03:57,030 --> 02:03:58,798
POLL SET UP OR -- YEAH, SO WE

3766
02:03:58,798 --> 02:04:00,533
HAVE A LITTLE POLL SET UP.

3767
02:04:00,533 --> 02:04:03,303
AND MAYBE ONI CAN YOU EXPLAIN

3768
02:04:03,303 --> 02:04:05,071
HOW THAT POLL WORKS?

3769
02:04:05,071 --> 02:04:05,738
>> YES.

3770
02:04:05,738 --> 02:04:07,240
SO THOSE OF YOU -- SORRY.

3771
02:04:07,240 --> 02:04:09,142
THOSE OF YOU WHO ARE ON ZOOM,

3772
02:04:09,142 --> 02:04:10,810
YOU CAN USE THE POLL.

3773
02:04:10,810 --> 02:04:12,045
IF YOU'RE IN THE ROOM, YOU CAN

3774
02:04:12,045 --> 02:04:13,546
JUST RAISE YOUR HANDS AND WE'LL

3775
02:04:13,546 --> 02:04:15,615
HAVE PEOPLE THAT ARE COUNTING

3776
02:04:15,615 --> 02:04:18,251
FOR AND AGAINST.

3777
02:04:18,251 --> 02:04:20,019
SO WOULD YOU LIKE ME TO -- OKAY.

3778
02:04:20,019 --> 02:04:22,655
SO IF YOU HAVE NO CONCERNS WITH

3779
02:04:22,655 --> 02:04:24,524
ADDING BOTH PAPERS TO THE

3780
02:04:24,524 --> 02:04:25,425
PUBLICATION, PLEASE RAISE YOUR

3781
02:04:25,425 --> 02:04:28,461
HANDS.

3782
02:04:28,461 --> 02:04:33,066
OR VOTE IN ZOOM.

3783
02:04:33,066 --> 02:04:33,733
NO CONCERNS.

3784
02:04:33,733 --> 02:04:40,440
NO CONCERNS.

3785
02:04:40,440 --> 02:04:42,175
KEEP YOUR HANDS UP SO WE MAKE

3786
02:04:42,175 --> 02:04:49,282
SURE WE GET EVERYBODY.

3787
02:04:49,282 --> 02:04:50,717
AND WE HAVE WALTER IN THE BACK.

3788
02:04:50,717 --> 02:04:51,784
I JUST WANT TO MAKE SURE YOU

3789
02:04:51,784 --> 02:04:52,385
GUYS SEE HIM.

3790
02:04:52,385 --> 02:04:52,719
THANKS.

3791
02:04:52,719 --> 02:04:53,686
ALL RIGHT.

3792
02:04:53,686 --> 02:04:55,688
DOES ANYBODY HAVE CONCERNS ABOUT

3793
02:04:55,688 --> 02:05:00,159
INCLUDING BOTH ARTICLES?

3794
02:05:00,159 --> 02:05:10,370
DR. RIVERA?

3795
02:05:14,240 --> 02:05:15,341
ANY ABSTAINING FROM VOTING IN

3796
02:05:15,341 --> 02:05:20,546
THE ROOM?

3797
02:05:20,546 --> 02:05:21,080
DR. JOHNSON?

3798
02:05:21,080 --> 02:05:21,614
OKAY.

3799
02:05:21,614 --> 02:05:23,683
AND ONLINE, WE HAVE 14 WHO SAID

3800
02:05:23,683 --> 02:05:24,951
THEY HAVE NO CONCERNS AND WOULD

3801
02:05:24,951 --> 02:05:27,653
LIKE TO ACKNOWLEDGE BOTH.

3802
02:05:27,653 --> 02:05:29,188
NO ONE ONLINE SAYING THEY HAVE

3803
02:05:29,188 --> 02:05:30,490
CONCERNS, AND WE HAVE ONE

3804
02:05:30,490 --> 02:05:40,533
ABSTAINING FROM VOTING.

3805
02:05:40,533 --> 02:05:42,034
>> SO IT LOOKS LIKE THE
MAJORITY

3806
02:05:42,034 --> 02:05:43,603
HAS SAID THAT THEY WOULD BE

3807
02:05:43,603 --> 02:05:45,138
COMFORTABLE WITH HAVING BOTH

3808
02:05:45,138 --> 02:05:46,773
ACKNOWLEDGED -- IF ANYONE WHO'S

3809
02:05:46,773 --> 02:05:49,175
DISSENTING WANTS TO SHARE ANY

3810
02:05:49,175 --> 02:05:50,610
COMMENTS, YOU'RE WELCOME TO DO

3811
02:05:50,610 --> 02:05:51,043
THAT.

3812
02:05:51,043 --> 02:05:54,313
I'M HAPPY TO HAVE YOU AIR ANY

3813
02:05:54,313 --> 02:05:55,181
CONCERNS YOU'D WANT THE

3814
02:05:55,181 --> 02:05:59,685
COMMITTEE TO KNOW ABOUT.

3815
02:05:59,685 --> 02:06:01,220
>> FIRST OF ALL, I'M FINE
WITH

3816
02:06:01,220 --> 02:06:02,989
IT BOTH BEING ACKNOWLEDGED.

3817
02:06:02,989 --> 02:06:04,290
IT'S NOT THE HILL I'M GOING TO

3818
02:06:04,290 --> 02:06:04,991
DIE ON.

3819
02:06:04,991 --> 02:06:07,427
BUT I DO THINK THAT IT NOT

3820
02:06:07,427 --> 02:06:08,828
COMPLETELY CLEAR TO ME THAT

3821
02:06:08,828 --> 02:06:10,363
THESE ARE COMPANION PIECES.

3822
02:06:10,363 --> 02:06:14,467
I THINK THEY ARE SEPARATE

3823
02:06:14,467 --> 02:06:14,967
ARTICLES.

3824
02:06:14,967 --> 02:06:15,968
WE LOOKED AT THEM BOTH.

3825
02:06:15,968 --> 02:06:17,837
WE VOTED ON ONE.

3826
02:06:17,837 --> 02:06:20,373
SO THAT'S MY ONLY DISSENT.

3827
02:06:20,373 --> 02:06:21,374
BUT I'M VERY HAPPY TO GO WITH

3828
02:06:21,374 --> 02:06:23,042
THE MAJORITY OPINION HERE.

3829
02:06:23,042 --> 02:06:24,410
>> OKAY.

3830
02:06:24,410 --> 02:06:25,878
ANYTHING ELSE THAT NEEDS TO BE

3831
02:06:25,878 --> 02:06:27,947
SHARED?

3832
02:06:27,947 --> 02:06:32,218
 IN THE ROOM?

3833
02:06:32,218 --> 02:06:32,652
OKAY.

3834
02:06:32,652 --> 02:06:33,019
SAM?

3835
02:06:33,019 --> 02:06:37,490
>> I WAS JUST GOING TO
SAY, WE

3836
02:06:37,490 --> 02:06:38,891
PUT IT IN IN A WAY THAT REFLECTS

3837
02:06:38,891 --> 02:06:40,126
THEY'RE BACK TO BACK COMPANION

3838
02:06:40,126 --> 02:06:41,661
PIECES SO THAT IT'S MORE CLEAR

3839
02:06:41,661 --> 02:06:42,462
TO READERS?

3840
02:06:42,462 --> 02:06:43,362
>> YES.

3841
02:06:43,362 --> 02:06:45,198
WE HAVE -- SO WE HAVE A VERSION

3842
02:06:45,198 --> 02:06:47,200
OF THE DRAFT WHERE WE'VE TRIED

3843
02:06:47,200 --> 02:06:49,202
TO WEAVE IT IN AND WE SAY THAT

3844
02:06:49,202 --> 02:06:52,705
THEY'RE COMPANION ARTICLES.

3845
02:06:52,705 --> 02:06:56,642
SO -- ALL RIGHT, SO WE WILL --

3846
02:06:56,642 --> 02:06:56,809
OH,

3847
02:06:56,809 --> 02:06:58,211
>> NOT THAT I'M MAKING ANY

3848
02:06:58,211 --> 02:06:59,145
SUGGESTIONS ABOUT YOU HAVING TO

3849
02:06:59,145 --> 02:06:59,846
RE-WORD THINGS THAT YOU'VE

3850
02:06:59,846 --> 02:07:02,315
ALREADY DONE, BUT I WONDER IF IT

3851
02:07:02,315 --> 02:07:03,416
WOULD MAKE ACCEPTS TO SORT OF

3852
02:07:03,416 --> 02:07:04,450
KEEP IT THE WAY THAT WE VOTED

3853
02:07:04,450 --> 02:07:05,885
AND THEN MAKE A NOTE AT THE

3854
02:07:05,885 --> 02:07:09,088
BOTTOM THAT JUST SAYS, THIS IS A

3855
02:07:09,088 --> 02:07:09,822
COMPANION -- I DON'T KNOW.

3856
02:07:09,822 --> 02:07:12,592
I MEAN, I'M SORT OF -- WE DID

3857
02:07:12,592 --> 02:07:15,027
VOTE ON ONE AS OPPOSED TO THE

3858
02:07:15,027 --> 02:07:15,695
OTHER AND I'M SURE THAT THEY

3859
02:07:15,695 --> 02:07:16,829
WOULD LIKE THEM ACKNOWLEDGED

3860
02:07:16,829 --> 02:07:18,664
KIND OF AS A PACKAGE.

3861
02:07:18,664 --> 02:07:19,899
I'M WONDERING IF WE COULD SORT

3862
02:07:19,899 --> 02:07:21,734
OF KEEP THE SUGGESTION OR THE --

3863
02:07:21,734 --> 02:07:22,668
SORT OF THE DESCRIPTION OF THE

3864
02:07:22,668 --> 02:07:25,171
ONE THAT WE HAD VOTED AS AN

3865
02:07:25,171 --> 02:07:28,207
ADVANCE AND THEN ACKNOWLEDGE THE

3866
02:07:28,207 --> 02:07:30,176
OTHER ONE SORT OF -- OR JUST --

3867
02:07:30,176 --> 02:07:31,611
HAVE IT ACKNOWLEDGED IN SOME WAY

3868
02:07:31,611 --> 02:07:33,179
SO PEOPLE WOULD SEE THAT THEY GO

3869
02:07:33,179 --> 02:07:33,980
TOGETHER.

3870
02:07:33,980 --> 02:07:35,781
BUT IF IT DOES AS YOU PUT THE

3871
02:07:35,781 --> 02:07:36,883
DESCRIPTION TOGETHER, IF IT

3872
02:07:36,883 --> 02:07:40,520
REALLY DOES FEEL LIKE THEY DO

3873
02:07:40,520 --> 02:07:42,622
REALLY CLEARLY GO TOGETHER, THEN

3874
02:07:42,622 --> 02:07:43,823
MAYBE THAT DOESN'T MAKE SENSE.

3875
02:07:43,823 --> 02:07:45,324
>> THAT MAKES SENSE.

3876
02:07:45,324 --> 02:07:47,026
WOULD YOU ALL FEEL COMFORTABLE

3877
02:07:47,026 --> 02:07:48,528
WITH US JUST LOOKING AT IT?

3878
02:07:48,528 --> 02:07:49,862
IT HARD TO DO IT IN THE ROOM

3879
02:07:49,862 --> 02:07:50,997
BECAUSE I'M NOT LOOKING AT IT

3880
02:07:50,997 --> 02:07:52,198
RIGHT NOW AND JUST LOOKING AT

3881
02:07:52,198 --> 02:07:54,267
AND SEEING WHAT ACTUALLY MAKES

3882
02:07:54,267 --> 02:07:55,801
SENSE IN THE CONTEXT, BUT THAT'S

3883
02:07:55,801 --> 02:07:57,236
AN ALTERNATE SUGGESTION WE COULD

3884
02:07:57,236 --> 02:07:58,271
JUST ACKNOWLEDGE THE OTHER ONE

3885
02:07:58,271 --> 02:08:01,407
AS A FOOTNOTE.

3886
02:08:01,407 --> 02:08:03,042
AND WE COULD ADD IT BACK TO THE

3887
02:08:03,042 --> 02:08:03,409
NOMINATION LIST.

3888
02:08:03,409 --> 02:08:04,710
IT WAS REMOVED FROM THE

3889
02:08:04,710 --> 02:08:06,445
NOMINATION LIST BUT WE COULD PUT

3890
02:08:06,445 --> 02:08:08,447
IT BACK ON THE LIST IF IT'S NOT

3891
02:08:08,447 --> 02:08:12,652
OVERTLY LIKE PUT IN THE ADVANCE.

3892
02:08:12,652 --> 02:08:15,254
>> YOU HAVE TWO COMMENTS
ONLINE.

3893
02:08:15,254 --> 02:08:16,522
ONE IS FROM ALICE CARTER.

3894
02:08:16,522 --> 02:08:17,490
>> ALICE?

3895
02:08:17,490 --> 02:08:18,791
THANK YOU, SHELLI.

3896
02:08:18,791 --> 02:08:19,492
ALICE, GO AHEAD.

3897
02:08:19,492 --> 02:08:20,726
>> I JUST WONNER D-DAY IF
WE

3898
02:08:20,726 --> 02:08:28,568
HAVWONDERED, IF WE HAVE ALIST OH

3899
02:08:28,568 --> 02:08:29,702
GO UNDER ONE NUMBER.

3900
02:08:29,702 --> 02:08:31,370
SO I THINK IN THAT CASE IT'S

3901
02:08:31,370 --> 02:08:32,405
CLEAR THESE ARE COMPANION PAPERS

3902
02:08:32,405 --> 02:08:33,806
AND IT WILL ALSO PROBABLY BE

3903
02:08:33,806 --> 02:08:35,141
OBVIOUS FROM THE CITATIONS THAT

3904
02:08:35,141 --> 02:08:36,275
THEY'RE COMPANION PAPERS.

3905
02:08:36,275 --> 02:08:39,211
>> SO HOW WE HAVE IT, IF
WE WERE

3906
02:08:39,211 --> 02:08:40,313
GOING TO DO THIS AND HOW WE'VE

3907
02:08:40,313 --> 02:08:41,981
DONE IT IN THE PAST WHEN WE HAD

3908
02:08:41,981 --> 02:08:43,616
THIS SITUATION OF COMPANION

3909
02:08:43,616 --> 02:08:45,484
PAPERS IS, WE'LL LIST BOTH

3910
02:08:45,484 --> 02:08:47,486
CITATIONS, HAVE ONE PARAGRAPH

3911
02:08:47,486 --> 02:08:49,355
THAT MENTIONS BOTH PAPERS AND

3912
02:08:49,355 --> 02:08:51,190
TALKS ABOUT HOW THEY RELATE, AND

3913
02:08:51,190 --> 02:08:52,091
THEN THAT'S IT.

3914
02:08:52,091 --> 02:08:54,293
AND IT'S ONE OF THE 20.

3915
02:08:54,293 --> 02:08:55,328
BUT TWO PAPERS ARE ACKNOWLEDGED

3916
02:08:55,328 --> 02:08:59,699
IN ONE OF THEM.

3917
02:08:59,699 --> 02:09:01,701
AND WAS IT PAUL THAT HAD --

3918
02:09:01,701 --> 02:09:03,235
ALLYSON, DO YOU HAVE A COMMENT?

3919
02:09:03,235 --> 02:09:05,204
>> YEAH, HI.

3920
02:09:05,204 --> 02:09:06,072
ALISON MARVIN FROM SOCIAL

3921
02:09:06,072 --> 02:09:09,809
SECURITY.

3922
02:09:09,809 --> 02:09:11,277
SO I THINK THE MAIN CONCERN HERE

3923
02:09:11,277 --> 02:09:13,012
IS THAT THERE WAS A FORCED

3924
02:09:13,012 --> 02:09:17,183
KICKOUT OF ONE OF THE PAPERS.

3925
02:09:17,183 --> 02:09:18,851
SO THAT POTENTIALLY BOTH PAPERS

3926
02:09:18,851 --> 02:09:20,820
COULD HAVE MADE IT INTO THE TOP

3927
02:09:20,820 --> 02:09:20,987
20.

3928
02:09:20,987 --> 02:09:24,423
SO THAT WAS MY CONCERN THAT WE

3929
02:09:24,423 --> 02:09:25,891
ELIMINATED ONE DELIBERATELY.

3930
02:09:25,891 --> 02:09:30,262
BUT I DO LIKE THE OPTION OF YOU

3931
02:09:30,262 --> 02:09:32,131
REVIEWING THEM AGAIN AND IF THEY

3932
02:09:32,131 --> 02:09:37,236
ARE TRULY COMPANION PIECES, TO

3933
02:09:37,236 --> 02:09:39,739
CALL THEM NUMBER 10A AND B,

3934
02:09:39,739 --> 02:09:41,374
WHICH IS FINE, OR WHETHER THE

3935
02:09:41,374 --> 02:09:43,442
OTHER OPTION WAS JUST SIMPLY TO

3936
02:09:43,442 --> 02:09:45,144
HAVE THE ONE WHICH WAS SELECTED

3937
02:09:45,144 --> 02:09:47,546
AND THEN SAY "PLEASE ALSO SEE

3938
02:09:47,546 --> 02:09:48,447
THIS COMPANION PIECE."

3939
02:09:48,447 --> 02:09:50,016
SO EITHER OF THOSE WOULD WORK,

3940
02:09:50,016 --> 02:09:54,387
DEPENDING ON WHAT YOU FEEL WHEN

3941
02:09:54,387 --> 02:09:55,021
YOU'VE REVIEWED BOTH OF THE

3942
02:09:55,021 --> 02:09:56,689
PIECES TO SEE HOW THEY FIT

3943
02:09:56,689 --> 02:09:59,158
TOGETHER.

3944
02:09:59,158 --> 02:09:59,825
>> THANK YOU.

3945
02:09:59,825 --> 02:10:01,360
AND PAUL, DO YOU HAVE ANY

3946
02:10:01,360 --> 02:10:02,228
COMMENTS, GIVEN THAT YOU WERE

3947
02:10:02,228 --> 02:10:06,265
PART OF THAT DISCUSSION WITH DR?

3948
02:10:06,265 --> 02:10:07,333
>> THANKS FOR ASKING.

3949
02:10:07,333 --> 02:10:10,503
I DON'T HAVE A STRONG OPINION

3950
02:10:10,503 --> 02:10:12,471
HERE ON WHICH WAY TO GO.

3951
02:10:12,471 --> 02:10:13,973
IT'S VERY HELPFUL TO KNOW THAT

3952
02:10:13,973 --> 02:10:15,608
THERE WAS A PRECEDENT.

3953
02:10:15,608 --> 02:10:18,110
I DON'T EXACTLY KNOW WHAT THAT

3954
02:10:18,110 --> 02:10:20,179
PRECEDENT WAS, AND MAYBE IT

3955
02:10:20,179 --> 02:10:22,682
MAKES SENSE TO FOLLOW MOST

3956
02:10:22,682 --> 02:10:23,883
CLOSELY ALONG THE LINES OF WHAT

3957
02:10:23,883 --> 02:10:25,051
THE PRECEDENT WAS.

3958
02:10:25,051 --> 02:10:27,019
BUT I ALSO LIKE THE IDEA OF JUST

3959
02:10:27,019 --> 02:10:28,854
KEEPING THE ONE THAT WE VOTED ON

3960
02:10:28,854 --> 02:10:30,056
AND THEN MENTIONING THE OTHER

3961
02:10:30,056 --> 02:10:32,358
ONE IN A FOOTNOTE AS A COMPANION

3962
02:10:32,358 --> 02:10:33,426
PAPER, I THINK THAT ALSO MAKES

3963
02:10:33,426 --> 02:10:34,527
SENSE.

3964
02:10:34,527 --> 02:10:36,062
SO I'M OPEN TO THESE VARIOUS

3965
02:10:36,062 --> 02:10:37,296
POSSIBILITIES.

3966
02:10:37,296 --> 02:10:37,797
>> GREAT.

3967
02:10:37,797 --> 02:10:40,232
IT SOUNDS LIKE THE COMMITTEE

3968
02:10:40,232 --> 02:10:42,702
MIGHT BE OPEN TO EITHER OPTION

3969
02:10:42,702 --> 02:10:44,570
DEPENDING ON WHICH ONE MAKES

3970
02:10:44,570 --> 02:10:46,072
MORE SENSE, BUT I THINK IT WILL

3971
02:10:46,072 --> 02:10:47,039
TAKE A LITTLE BIT OF REVIEW FOR

3972
02:10:47,039 --> 02:10:48,374
US TO FIGURE THAT OUT.

3973
02:10:48,374 --> 02:10:50,009
ONCE THAT'S RESOLVED, THEN WE'LL

3974
02:10:50,009 --> 02:10:51,477
BE SENDING IT OUT TO YOU FOR

3975
02:10:51,477 --> 02:10:52,578
REVIEW, BECAUSE I THINK THE

3976
02:10:52,578 --> 02:10:54,647
DOCUMENT IS BASICALLY READY.

3977
02:10:54,647 --> 02:10:56,248
SO WITH THAT, I THINK WE WILL

3978
02:10:56,248 --> 02:11:02,121
CLOSE OUT THIS DISCUSSION.

3979
02:11:02,121 --> 02:11:03,923
AND NEXT WE'RE GOING TO TALK

3980
02:11:03,923 --> 02:11:06,425
ABOUT THE 2024 IACC STRATEGIC

3981
02:11:06,425 --> 02:11:09,261
PLAN UPDATE, WHICH IS OUR REPORT

3982
02:11:09,261 --> 02:11:09,962
ONCO-OCCURRING CONDITIONS, BOTH

3983
02:11:09,962 --> 02:11:11,063
PHYSICAL AND MENTAL HEALTH

3984
02:11:11,063 --> 02:11:12,798
CONDITIONS AND THEIR IMPACTS ON

3985
02:11:12,798 --> 02:11:14,200
HEALTH OUTCOMES.

3986
02:11:14,200 --> 02:11:16,368
AND RIGHT NOW ONAC IS COMPLETING

3987
02:11:16,368 --> 02:11:18,671
A DRAFT OF THIS REPORT USING

3988
02:11:18,671 --> 02:11:21,140
INFORMATION THAT WE GATHERED

3989
02:11:21,140 --> 02:11:23,209
THROUGH THE PREVIOUS WORKING

3990
02:11:23,209 --> 02:11:25,044
GROUP THAT WORKED ON THIS, AS

3991
02:11:25,044 --> 02:11:28,481
WELL AS OUR VERY ROBUST RFI THAT

3992
02:11:28,481 --> 02:11:30,316
HAD OVER 1200 RESPONSES FROM THE

3993
02:11:30,316 --> 02:11:30,983
COMMUNITY, AND DISCUSSIONS WE'VE

3994
02:11:30,983 --> 02:11:32,718
HAD HERE IN THE IACC AND A

3995
02:11:32,718 --> 02:11:34,553
COUPLE OF WORKSHOPS THAT WE

3996
02:11:34,553 --> 02:11:38,157
HELD, AND SO THIS WAS ALL BEING

3997
02:11:38,157 --> 02:11:39,592
WOVEN TOGETHER INTO A DRAFT AND

3998
02:11:39,592 --> 02:11:40,526
I'LL SHARE WITH YOU THE OUTLINE

3999
02:11:40,526 --> 02:11:42,228
OF HOW THAT DRAFT LOOKS.

4000
02:11:42,228 --> 02:11:43,829
SO OUR PLAN, GIVEN THAT WE'RE

4001
02:11:43,829 --> 02:11:44,830
NOT HAVING ANOTHER FULL

4002
02:11:44,830 --> 02:11:46,232
COMMITTEE MEETING, WOULD BE THAT

4003
02:11:46,232 --> 02:11:47,566
WHEN WE SEND IT -- WE'RE GOING

4004
02:11:47,566 --> 02:11:50,369
TO BE SENDING TO THE IACC FOR

4005
02:11:50,369 --> 02:11:51,737
REVIEW, AT THAT TIME, WE'LL POST

4006
02:11:51,737 --> 02:11:54,507
IT ON A WEBPAGE THAT IS DEVOTED

4007
02:11:54,507 --> 02:11:56,475
TO THIS REPORT, AND ALSO INCLUDE

4008
02:11:56,475 --> 02:11:57,877
INFORMATION ABOUT ALL THE OTHER

4009
02:11:57,877 --> 02:11:59,178
ACTIVITIES RELATED TO THIS

4010
02:11:59,178 --> 02:12:01,013
REPORT THAT WE'VE DONE SO FAR,

4011
02:12:01,013 --> 02:12:03,682
SO THAT THE PUBLIC CAN ALSO

4012
02:12:03,682 --> 02:12:04,650
ACCESS THE INFORMATION AT THE

4013
02:12:04,650 --> 02:12:07,753
SAME TIME.

4014
02:12:07,753 --> 02:12:08,387
AND I'LL GO THROUGH THE PROCESS

4015
02:12:08,387 --> 02:12:09,989
THAT WE HAVE PLANNED.

4016
02:12:09,989 --> 02:12:12,057
SO ONAC IS GOING TO REVISE THE

4017
02:12:12,057 --> 02:12:13,859
DRAFT REPORT BASED ON IACC

4018
02:12:13,859 --> 02:12:17,163
MEMBER FEEDBACK THAT WE'LL BE

4019
02:12:17,163 --> 02:12:18,130
COLLECTING THROUGH A SURVEY

4020
02:12:18,130 --> 02:12:19,265
DOCUMENT THAT WE'LL BE SENDING

4021
02:12:19,265 --> 02:12:21,734
YOU, AND THEN WE'LL DISTRIBUTE A

4022
02:12:21,734 --> 02:12:23,903
SECOND DRAFT TO YOU IN THE FALL

4023
02:12:23,903 --> 02:12:25,304
OF 2024.

4024
02:12:25,304 --> 02:12:29,141
AND OUR PLAN WOULD BE TO HAVE A

4025
02:12:29,141 --> 02:12:30,876
BRIEF 1 TO MAXIMUM 2 HOURS

4026
02:12:30,876 --> 02:12:32,845
VIRTUAL MEETING THAT WILL BE

4027
02:12:32,845 --> 02:12:34,246
SCHEDULED FOR FALL OF 2024 TO

4028
02:12:34,246 --> 02:12:35,214
DISCUSS THE REVISED DRAFT WITH

4029
02:12:35,214 --> 02:12:37,082
THE GOAL OF MAYBE TAKING SOME

4030
02:12:37,082 --> 02:12:39,151
FINAL COMMENTS THAT WE COULD

4031
02:12:39,151 --> 02:12:40,419
INCLUDE IN APPROVING THE REPORT.

4032
02:12:40,419 --> 02:12:41,954
HOW, IF YOU HAVE SO MANY

4033
02:12:41,954 --> 02:12:43,389
COMMENTS THAT WE CAN'T APPROVE

4034
02:12:43,389 --> 02:12:44,857
THE REPORT, WE CAN ALWAYS JUST

4035
02:12:44,857 --> 02:12:46,091
HAVE ANOTHER SHORT MEETING

4036
02:12:46,091 --> 02:12:46,559
LATER.

4037
02:12:46,559 --> 02:12:48,727
SO WE WILL KIND OF TRY TO BE

4038
02:12:48,727 --> 02:12:49,895
FLEXIBLE AROUND THAT.

4039
02:12:49,895 --> 02:12:51,230
BUT OUR GOAL WOULD BE HOPEFULLY

4040
02:12:51,230 --> 02:12:55,034
GETTING IT APPROVED THIS FALL.

4041
02:12:55,034 --> 02:12:56,468
AND ONCE WE HAVE ALL OF THE

4042
02:12:56,468 --> 02:12:57,536
FEEDBACK, WE'LL FINALIZE THE

4043
02:12:57,536 --> 02:13:00,506
REPORT AND TRY TO PUBLISH IT

4044
02:13:00,506 --> 02:13:02,908
WITHIN 2024 IF POSSIBLE.

4045
02:13:02,908 --> 02:13:04,276
WE DON'T WANT TO PASS IT ON TO

4046
02:13:04,276 --> 02:13:07,379
THE NEXT COMMITTEE.

4047
02:13:07,379 --> 02:13:11,951
SO TO GO OVER SOME OF THE

4048
02:13:11,951 --> 02:13:12,751
CONTENTS, WE HAVE AN

4049
02:13:12,751 --> 02:13:13,886
INTRODUCTION THAT GOES OVER THE

4050
02:13:13,886 --> 02:13:15,754
EPIDEMIOLOGY OF CO-OCCURRING

4051
02:13:15,754 --> 02:13:17,056
CONDITIONS, HEALTH DISPARITIES,

4052
02:13:17,056 --> 02:13:21,360
RECENT IACC ACTIVITY AND

4053
02:13:21,360 --> 02:13:22,027
INTEREST THAT RELATE TO

4054
02:13:22,027 --> 02:13:23,896
CO-OCCURRING CONDITIONS, AND

4055
02:13:23,896 --> 02:13:25,231
COMMUNITY PERCEPTIONS OF

4056
02:13:25,231 --> 02:13:25,998
RESEARCH AND SERVICES NEEDS THAT

4057
02:13:25,998 --> 02:13:33,606
ARE TAKEN FROM THE RFI ANALYSIS.

4058
02:13:33,606 --> 02:13:36,175
CHAPTER 1 IS ON PHYSICAL

4059
02:13:36,175 --> 02:13:37,710
CO-OCCURRING HEALTH CONDITIONS,

4060
02:13:37,710 --> 02:13:39,011
EPILEPSY, GI ISSUES AND

4061
02:13:39,011 --> 02:13:40,679
DISORDERS, SLEEP ISSUES AND

4062
02:13:40,679 --> 02:13:42,748
DISORDERS, SENSORY AND A MOTOR

4063
02:13:42,748 --> 02:13:45,684
CHALLENGES, EHLERS DANLOS

4064
02:13:45,684 --> 02:13:47,453
SYNDROMES AND DYSAUTONOMIA,

4065
02:13:47,453 --> 02:13:50,823
HEALTH IN OLDER ADULTS AND AGING

4066
02:13:50,823 --> 02:13:51,590
HEALTH-RELATED CONDITIONS.

4067
02:13:51,590 --> 02:13:55,060
AND FOR CHAPTER 2, WHICH IS

4068
02:13:55,060 --> 02:13:55,828
ONCOOCCURRING MENTAL HEALTH

4069
02:13:55,828 --> 02:13:57,997
CONDITIONS, IT INCLUDES ANXIETY

4070
02:13:57,997 --> 02:14:00,299
DISORDERS, ATTENTION DEFICIT AND

4071
02:14:00,299 --> 02:14:03,135
HYPERACTIVITY DISORDER,

4072
02:14:03,135 --> 02:14:05,104
DEPRESSION, OBSESSIVE COMPULSIVE

4073
02:14:05,104 --> 02:14:07,940
DISORDER, SELF INJURIOUS

4074
02:14:07,940 --> 02:14:09,341
BEHAVIOR, AGGRESSIVE BEHAVIOR

4075
02:14:09,341 --> 02:14:11,543
AND EMOTIONAL DYSREGULATION,

4076
02:14:11,543 --> 02:14:13,345
SUICIDALITY, AND ADDITIONAL

4077
02:14:13,345 --> 02:14:14,446
MENTAL HEALTH CONDITIONS SUCH AS

4078
02:14:14,446 --> 02:14:15,981
BIPOLAR, FEEDING DISORDERS,

4079
02:14:15,981 --> 02:14:18,550
GENDER DYSPHORIA, PATHOLOGICAL

4080
02:14:18,550 --> 02:14:20,386
DEMAND AVOIDANCE, SCHIZOPHRENIA,

4081
02:14:20,386 --> 02:14:22,187
SUBSTANCE USE DISORDER, TOURETTE

4082
02:14:22,187 --> 02:14:24,290
SYNDROME AND OTHER TIC DISORDERS

4083
02:14:24,290 --> 02:14:26,258
AND TRAUMA AND ADVERSE CHILDHOOD

4084
02:14:26,258 --> 02:14:28,127
EXPERIENCES, WHICH IS A WIDER

4085
02:14:28,127 --> 02:14:29,428
SCOPE OF ISSUES THAT WE HEARD

4086
02:14:29,428 --> 02:14:33,232
ABOUT THROUGH OUR RFI, SO WE'VE

4087
02:14:33,232 --> 02:14:34,099
EXPANDED IT FROM THE PREVIOUS

4088
02:14:34,099 --> 02:14:36,168
WORKING GROUP.

4089
02:14:36,168 --> 02:14:39,004
ALSO CHAPTER 3 WHICH WILL BE

4090
02:14:39,004 --> 02:14:40,439
ONCOOCCURRING INTELLECTUAL,

4091
02:14:40,439 --> 02:14:41,206
COMMUNICATION AND OTHER

4092
02:14:41,206 --> 02:14:42,041
DEVELOPMENTAL DISABILITY, AND

4093
02:14:42,041 --> 02:14:43,676
WILL INCLUDE INTELLECTUAL

4094
02:14:43,676 --> 02:14:45,110
DISANLT, COMMUNICATION

4095
02:14:45,110 --> 02:14:46,645
CHALLENGES, AND RELATED

4096
02:14:46,645 --> 02:14:48,580
DEVELOPMENTAL DISABILITIES SUCH

4097
02:14:48,580 --> 02:14:59,058
AS FRAGILE X, ARE THE ETT, PHE 

4098
02:14:59,058 --> 02:15:04,730
PHELAN MACDERMID.

4099
02:15:04,730 --> 02:15:05,464
CONSIDERATIONS FOR INDIVIDUALS

4100
02:15:05,464 --> 02:15:06,365
WITH HIGH SUPPORT NEEDS,

4101
02:15:06,365 --> 02:15:08,067
REDUCING DISPARITY, AND THE

4102
02:15:08,067 --> 02:15:09,835
IMPACT OF COVID-19.

4103
02:15:09,835 --> 02:15:12,037
SO THIS IS JUST A VERY QUICK

4104
02:15:12,037 --> 02:15:13,939
SUMMARY OF HOW IT BEEN ORGANIZED

4105
02:15:13,939 --> 02:15:16,141
TO TRY TO COVER THE ISSUES THAT

4106
02:15:16,141 --> 02:15:17,643
WE'VE TALKED ABOUT HERE IN THIS

4107
02:15:17,643 --> 02:15:19,311
COMMITTEE THROUGH OUR WORKSHOPS

4108
02:15:19,311 --> 02:15:22,014
AND THE RFI AND OUR GOAL WAS TO

4109
02:15:22,014 --> 02:15:23,515
GIVE A NICE SUMMARY WITHOUT

4110
02:15:23,515 --> 02:15:25,517
MAKING IT SUPER LENGTHY BECAUSE

4111
02:15:25,517 --> 02:15:27,886
IF IT'S A 500-PAGE REPORT,

4112
02:15:27,886 --> 02:15:29,421
NOBODY WILL READ IT OR ONLY THE

4113
02:15:29,421 --> 02:15:30,389
MOST DEDICATED WILL TAKE THE

4114
02:15:30,389 --> 02:15:32,491
TIME TO READ THAT WHOLE REPORT,

4115
02:15:32,491 --> 02:15:35,194
SO WE'RE TRYING TO BE -- TRYING

4116
02:15:35,194 --> 02:15:38,030
TO COVER THE ISSUES WHILE ALSO

4117
02:15:38,030 --> 02:15:39,431
MAKING IT SOMEWHAT BRIEF AND

4118
02:15:39,431 --> 02:15:40,666
TRYING TO MAKE IT AS ACCESSIBLE

4119
02:15:40,666 --> 02:15:42,001
AS POSSIBLE.

4120
02:15:42,001 --> 02:15:45,604
SO WE'RE TRYING TO BALANCE THAT.

4121
02:15:45,604 --> 02:15:46,972
AND I SEE THERE ARE A COUPLE

4122
02:15:46,972 --> 02:15:49,508
QUESTIONS.

4123
02:15:49,508 --> 02:15:50,809
SO THE PLAN WOULD BE FOR

4124
02:15:50,809 --> 02:15:51,777
COMMITTEE MEMBERS TO RECEIVE ALL

4125
02:15:51,777 --> 02:15:53,045
THESE CHAPTERS FOR REVIEW ALONG

4126
02:15:53,045 --> 02:15:55,381
WITH A SURVEY TO FACILITATE

4127
02:15:55,381 --> 02:15:56,448
COLLECTION OF YOUR FEEDBACK AND

4128
02:15:56,448 --> 02:15:58,283
THEN FOR US TO MAKE REVISIONS.

4129
02:15:58,283 --> 02:16:01,086
SO WE EXPECT TO BE MAKING SOME

4130
02:16:01,086 --> 02:16:02,388
REVISIONS, IT'S NOT GOING TO BE

4131
02:16:02,388 --> 02:16:03,022
PERFECT ON THIS FIRST DRAFT BUT

4132
02:16:03,022 --> 02:16:04,289
THAT'S THE PLAN.

4133
02:16:04,289 --> 02:16:06,592
SO DENA, DO YOU HAVE A COMMENT?

4134
02:16:06,592 --> 02:16:09,995
>> I'M SORRY, CAN YOU GO
BACK TO

4135
02:16:09,995 --> 02:16:17,836
THE VERY FIRST SLIDE?

4136
02:16:17,836 --> 02:16:18,604
>> INTRO?

4137
02:16:18,604 --> 02:16:19,805
>> YEAH.

4138
02:16:19,805 --> 02:16:20,439
OKAY.

4139
02:16:20,439 --> 02:16:26,011
I JUST WANTED TO -- I DON'T

4140
02:16:26,011 --> 02:16:26,311
KNOW.

4141
02:16:26,311 --> 02:16:27,646
I THINK I CAN MAKE MY COMMENTS

4142
02:16:27,646 --> 02:16:28,147
LATER.

4143
02:16:28,147 --> 02:16:29,948
I JUST WANTED TO CAPTURE -- THE

4144
02:16:29,948 --> 02:16:33,752
HEALTH DISPARITIES AREA THERE IN

4145
02:16:33,752 --> 02:16:35,487
TERMS OF COMMUNICATION, WE SAW

4146
02:16:35,487 --> 02:16:37,589
IT IN THE EARLIER COMMENTS THAT

4147
02:16:37,589 --> 02:16:38,357
CAME IN.

4148
02:16:38,357 --> 02:16:39,958
WE TEND TO THINK OF THIS AS

4149
02:16:39,958 --> 02:16:41,794
BEING A BINARY, A VERBAL AND

4150
02:16:41,794 --> 02:16:45,831
NON-VERBAL.

4151
02:16:45,831 --> 02:16:49,635
AND I CAN'T ARTICULATE MORE

4152
02:16:49,635 --> 02:16:50,836
FIRMLY HOW THE ARRAY OF

4153
02:16:50,836 --> 02:16:52,905
COMMUNICATION CHALLENGES

4154
02:16:52,905 --> 02:16:53,906
AUTISTIC PEOPLE FACE BECOME PART

4155
02:16:53,906 --> 02:16:57,609
OF THIS HEALTHCARE DISPARITY

4156
02:16:57,609 --> 02:16:58,277
ISSUE.

4157
02:16:58,277 --> 02:16:59,912
IF YOU HAVE SOME LANGUAGE,

4158
02:16:59,912 --> 02:17:02,081
PEOPLE EXPECT YOU TO NOT HAVE

4159
02:17:02,081 --> 02:17:03,315
ANY COMMUNICATION IMPAIRMENT.

4160
02:17:03,315 --> 02:17:05,651
IF YOU HAVE INTERMITTENT

4161
02:17:05,651 --> 02:17:08,053
COMMUNICATION CAPACITIES, PEOPLE

4162
02:17:08,053 --> 02:17:10,255
DON'T UNDERSTAND THAT, AND YOU

4163
02:17:10,255 --> 02:17:11,757
KNOW, SIMPLY HAVING TO PICK UP

4164
02:17:11,757 --> 02:17:13,292
THE PHONE TO CALL TO MAKE AN

4165
02:17:13,292 --> 02:17:16,261
APPOINTMENT CAN BECOME AN

4166
02:17:16,261 --> 02:17:16,762
ASTRONOMICAL CHALLENGE.

4167
02:17:16,762 --> 02:17:18,497
SO I JUST HOPE WE'RE BEING VERY

4168
02:17:18,497 --> 02:17:20,599
EXPLICIT IN THAT ARENA AROUND

4169
02:17:20,599 --> 02:17:23,235
COMMUNICATION IMPAIRMENT.

4170
02:17:23,235 --> 02:17:24,403
>> WE APPRECIATE THOSE
COMMENTS.

4171
02:17:24,403 --> 02:17:25,571
YOU'LL HAVE A CHANCE ON THE

4172
02:17:25,571 --> 02:17:27,106
SURVEY TO LET US KNOW IF WHAT

4173
02:17:27,106 --> 02:17:30,075
WE'VE WRITTEN HAS NOT CAPTURED

4174
02:17:30,075 --> 02:17:31,610
CERTAIN ASPECTS AND WE CAN TRY

4175
02:17:31,610 --> 02:17:32,544
TO FILL IN THE GAPS.

4176
02:17:32,544 --> 02:17:34,546
>> THANK YOU SO MUCH.

4177
02:17:34,546 --> 02:17:35,180
>> THANK YOU.

4178
02:17:35,180 --> 02:17:37,049
I SEE THAT MATT SIEGEL HAS A

4179
02:17:37,049 --> 02:17:37,683
QUESTION, THEN WE'LL GO TO

4180
02:17:37,683 --> 02:17:39,751
JULIE.

4181
02:17:39,751 --> 02:17:40,752
>> THANKS, SUSAN.

4182
02:17:40,752 --> 02:17:42,488
CAN YOU GO BACK FOR A SECOND A

4183
02:17:42,488 --> 02:17:44,556
COUPLE SLIDES TO THE LIST OF

4184
02:17:44,556 --> 02:17:46,558
MENTAL HEALTH CONDITIONS?

4185
02:17:46,558 --> 02:17:47,292
>> OKAY.

4186
02:17:47,292 --> 02:17:52,865
LET ME GO -- THAT'S FORWARD.

4187
02:17:52,865 --> 02:17:53,298
>> SORRY, FORWARD.

4188
02:17:53,298 --> 02:17:58,871
YES.

4189
02:17:58,871 --> 02:18:03,142
SO I JUST WANTED TO SAY THAT IT

4190
02:18:03,142 --> 02:18:07,146
STICKS OUT TO ME THAT PATHOLOGIC

4191
02:18:07,146 --> 02:18:08,881
DEMAND AVOIDANCE IS UNLIKE

4192
02:18:08,881 --> 02:18:13,285
ALMOST ALL OF THE OTHER NAMED

4193
02:18:13,285 --> 02:18:16,555
CONDITIONS THERE IS NOT AN

4194
02:18:16,555 --> 02:18:19,091
OFFICIAL CONDITION RECOGNIZED IN

4195
02:18:19,091 --> 02:18:25,097
CURRENT DIAGNOSTIC LEXICONS,

4196
02:18:25,097 --> 02:18:29,568
DSM-V OR ICD11 AS FAR AS I KNOW,

4197
02:18:29,568 --> 02:18:33,038
AND SO I QUESTION, WHILE THERE

4198
02:18:33,038 --> 02:18:34,573
MAY HAVE BEEN FEEDBACK ABOUT IT,

4199
02:18:34,573 --> 02:18:37,442
I QUESTION IT BEING ON THIS LIST

4200
02:18:37,442 --> 02:18:38,577
AND NOT LOOKING TO HAVE A LONG

4201
02:18:38,577 --> 02:18:40,012
DISCUSSION HERE, BUT JUST NOTING

4202
02:18:40,012 --> 02:18:43,949
THAT I THINK THAT NEEDS FURTHER

4203
02:18:43,949 --> 02:18:46,885
REVIEW BECAUSE IT STICKS OUT AS

4204
02:18:46,885 --> 02:18:47,753
DIFFERENT FROM THE REST OF THE

4205
02:18:47,753 --> 02:18:48,720
LIST.

4206
02:18:48,720 --> 02:18:49,922
>> THANK YOU.

4207
02:18:49,922 --> 02:18:53,525
AND WE DEFINITELY WILL TAKE

4208
02:18:53,525 --> 02:18:55,194
FEEDBACK THROUGH THE SURVEY.

4209
02:18:55,194 --> 02:18:56,995
ONE OPTION, AND I RECOGNIZE WHAT

4210
02:18:56,995 --> 02:18:58,330
YOUR CONCERNS ARE THERE, IS TO

4211
02:18:58,330 --> 02:18:59,431
JUST ACKNOWLEDGE IT IN THE

4212
02:18:59,431 --> 02:19:00,933
SECTION THAT TALKS ABOUT THE

4213
02:19:00,933 --> 02:19:01,266
RFI.

4214
02:19:01,266 --> 02:19:03,435
WE DID HEAR FROM A LOT OF PEOPLE

4215
02:19:03,435 --> 02:19:04,736
ABOUT IT, SO WE COULD

4216
02:19:04,736 --> 02:19:08,073
ACKNOWLEDGE IT THERE AND NOT

4217
02:19:08,073 --> 02:19:10,742
HAVE A SECTION IN THIS SECTION

4218
02:19:10,742 --> 02:19:13,812
ABOUT THAT, BUT WE'LL SHARE WITH

4219
02:19:13,812 --> 02:19:14,847
YOU WHAT WE HAVE AND WELCOME

4220
02:19:14,847 --> 02:19:16,215
YOUR FEEDBACK AND CAN MAKE

4221
02:19:16,215 --> 02:19:19,184
ADJUSTMENTS.

4222
02:19:19,184 --> 02:19:19,351
SAM.

4223
02:19:19,351 --> 02:19:21,153
>> I WANT TO SECOND WHAT

4224
02:19:21,153 --> 02:19:23,455
DR. SIEGEL SAID.

4225
02:19:23,455 --> 02:19:27,459
I REALLY AM GRATEFUL HE POINTED

4226
02:19:27,459 --> 02:19:29,895
THAT OUT BECAUSE I GLOSSED RIGHT

4227
02:19:29,895 --> 02:19:32,731
OVER IT BUT IT IS ALSO SORT OF A

4228
02:19:32,731 --> 02:19:33,699
CONTROVERSIAL CATEGORY.

4229
02:19:33,699 --> 02:19:37,102
OH, IT'S A CONTROVERSIAL

4230
02:19:37,102 --> 02:19:39,371
CATEGORY OF -- WITHIN THE

4231
02:19:39,371 --> 02:19:43,308
AUTISTIC COMMUNITY, AND I THINK

4232
02:19:43,308 --> 02:19:44,476
THERE'S REAL THINGS THAT PEOPLE

4233
02:19:44,476 --> 02:19:46,778
ARE TALKING ABOUT THERE, BUT THE

4234
02:19:46,778 --> 02:19:50,382
FRAMEWORK AS DEMAND AVOIDANCE

4235
02:19:50,382 --> 02:19:57,789
VERSUS OTHER WAYS TO FRAME IT,

4236
02:19:57,789 --> 02:20:00,559
IT'S DEFINITELY UNDER ACTIVE

4237
02:20:00,559 --> 02:20:01,059
DEBATE.

4238
02:20:01,059 --> 02:20:03,862
I THINK SORT OF ACKNOWLEDGING IT

4239
02:20:03,862 --> 02:20:05,264
AS SOMETHING THAT PEOPLE BROUGHT

4240
02:20:05,264 --> 02:20:06,431
UP AND FLAGGING IT AS SOMETHING

4241
02:20:06,431 --> 02:20:09,835
THAT NEEDS MORE DISCUSSION, LIKE

4242
02:20:09,835 --> 02:20:12,004
MORE INVESTIGATION TO BETTER

4243
02:20:12,004 --> 02:20:15,674
FLESH OUT WHAT THIS IS AND ISN'T

4244
02:20:15,674 --> 02:20:19,745
AND WHETHER OR NOT IT'S A VALID

4245
02:20:19,745 --> 02:20:20,612
FRAMEWORK IS TOTALLY WARRANTED.

4246
02:20:20,612 --> 02:20:25,517
>> THANK YOU FOR THAT
FEEDBACK.

4247
02:20:25,517 --> 02:20:26,184
ANY OTHER COMMENTS?

4248
02:20:26,184 --> 02:20:29,488
DID WE HAVE -- OH, JULIE.

4249
02:20:29,488 --> 02:20:31,556
>> WILL THERE BE ANY PLANS
TO GO

4250
02:20:31,556 --> 02:20:33,725
BACK TO THE ORIGINAL WORKING

4251
02:20:33,725 --> 02:20:35,794
GROUP MEMBERS FROM THE LAST

4252
02:20:35,794 --> 02:20:37,195
CYCLE TO GET THEIR FEEDBACK ON

4253
02:20:37,195 --> 02:20:38,497
THE DRAFT AS WELL?

4254
02:20:38,497 --> 02:20:40,032
>> WE CAN DO THAT.

4255
02:20:40,032 --> 02:20:41,934
WE HAVEN'T -- WE DIDN'T WORK

4256
02:20:41,934 --> 02:20:43,235
THAT INTO THE PLAN GOING FORWARD

4257
02:20:43,235 --> 02:20:45,070
BUT WE COULD SEND IT BACK OUT.

4258
02:20:45,070 --> 02:20:47,906
I'D LIKE TO SEE THE IACC MAYBE

4259
02:20:47,906 --> 02:20:49,775
RESPOND TO IT FIRST AND TRY TO

4260
02:20:49,775 --> 02:20:51,343
REFINE IT, BUT IS THAT SOMETHING

4261
02:20:51,343 --> 02:20:53,278
THE IACC WOULD LIKE US TO DO?

4262
02:20:53,278 --> 02:20:54,913
TO TRY TO GO BACK TO THE

4263
02:20:54,913 --> 02:20:56,448
PREVIOUS WORKING GROUP?

4264
02:20:56,448 --> 02:20:57,416
FOR THOSE WHO MIGHT BE AVAILABLE

4265
02:20:57,416 --> 02:20:58,450
TO HELP US OUT.

4266
02:20:58,450 --> 02:21:00,118
>> AND, YOU KNOW, BECAUSE
IT WAS

4267
02:21:00,118 --> 02:21:05,657
IN THE LAST CYCLE, SO WE HAD TWO

4268
02:21:05,657 --> 02:21:06,858
ONE-DAY -- ONE -- WERE THEY

4269
02:21:06,858 --> 02:21:08,493
SEPARATE?

4270
02:21:08,493 --> 02:21:10,329
TWO WORKSHOPS AND WE BROUGHT IN

4271
02:21:10,329 --> 02:21:10,996
INTERNATIONAL EXPERTS TO SORT OF

4272
02:21:10,996 --> 02:21:12,197
TALK TO US ABOUT IT, AND THEN

4273
02:21:12,197 --> 02:21:13,899
THERE WAS A TWO-DAY WORKSHOP ON

4274
02:21:13,899 --> 02:21:14,232
MENTAL HEALTH.

4275
02:21:14,232 --> 02:21:16,668
THAT WAS A LONG TIME AGO NOW, SO

4276
02:21:16,668 --> 02:21:19,638
IT MAY OR MAY NOT BE, YOU KNOW,

4277
02:21:19,638 --> 02:21:20,706
APPROPRIATE IS NOT THE RIGHT

4278
02:21:20,706 --> 02:21:21,173
WORD.

4279
02:21:21,173 --> 02:21:22,674
WE MAY OR MAY NOT DECIDE WE WANT

4280
02:21:22,674 --> 02:21:23,608
TO DO THAT BUT IT'S SOMETHING

4281
02:21:23,608 --> 02:21:24,443
THAT WE COULD THINK ABOUT.

4282
02:21:24,443 --> 02:21:26,211
>> AND OUR PLAN, OF
COURSE, WAS

4283
02:21:26,211 --> 02:21:27,512
TO ACKNOWLEDGE THAT WORKING

4284
02:21:27,512 --> 02:21:29,448
GROUP FOR THEIR CONTRIBUTIONS TO

4285
02:21:29,448 --> 02:21:31,850
THIS AND BOTH COMMITTEES FOR

4286
02:21:31,850 --> 02:21:33,318
THEIR CONTRIBUTIONS.

4287
02:21:33,318 --> 02:21:34,353
SO DO PEOPLE HAVE A SENSE OF

4288
02:21:34,353 --> 02:21:35,654
WHETHER YOU'D LIKE FOR US TO ADD

4289
02:21:35,654 --> 02:21:37,723
A STEP OF HAVING THAT WORKING

4290
02:21:37,723 --> 02:21:42,928
GROUP TRY TO REVIEW THIS?

4291
02:21:42,928 --> 02:21:44,930
IS THERE A STRONG SENTIMENT THAT

4292
02:21:44,930 --> 02:21:50,969
YOU WANT US TO ADD THAT STUFF?

4293
02:21:50,969 --> 02:21:52,738
>> I DON'T THINK IT WOULD
HURT

4294
02:21:52,738 --> 02:21:53,005
ANYTHING.

4295
02:21:53,005 --> 02:21:54,106
THIS IS DENA.

4296
02:21:54,106 --> 02:21:55,607
>> AND I DO THINK THERE
WERE

4297
02:21:55,607 --> 02:21:56,508
PEOPLE FROM THE GROUP THAT CAME

4298
02:21:56,508 --> 02:21:57,909
TO THE WORKSHOPS THAT WERE

4299
02:21:57,909 --> 02:22:00,612
WONDERING KIND OF WHAT HAD COME

4300
02:22:00,612 --> 02:22:01,079
OF THAT.

4301
02:22:01,079 --> 02:22:01,847
>> RIGHT, RIGHT.

4302
02:22:01,847 --> 02:22:04,216
>> SO WE CAN SHARE IT BACK
WITH

4303
02:22:04,216 --> 02:22:04,649
THEM, OF COURSE.

4304
02:22:04,649 --> 02:22:06,385
>> OF COURSE, YES, WE CAN
SHARE

4305
02:22:06,385 --> 02:22:07,052
IT BACK WITH THEM.

4306
02:22:07,052 --> 02:22:08,387
SO WE CAN LOOK AT THE PROCESS

4307
02:22:08,387 --> 02:22:09,921
AND SEE IF WE WANT TO ADD A STEP

4308
02:22:09,921 --> 02:22:11,223
IN THERE TO HAVE THEM PROVIDE

4309
02:22:11,223 --> 02:22:12,858
SOME ADDITIONAL INPUT.

4310
02:22:12,858 --> 02:22:14,059
THINGS HAVE ALSO EVOLVED SINCE

4311
02:22:14,059 --> 02:22:16,695
THAT TIME, SO THERE MAY BE SOME

4312
02:22:16,695 --> 02:22:17,129
ADDITIONAL UPDATES.

4313
02:22:17,129 --> 02:22:18,530
WE TRIED TO LOOK THROUGH THE

4314
02:22:18,530 --> 02:22:20,832
LITERATURE FOR SOME RECENT

4315
02:22:20,832 --> 02:22:23,969
UPDATES TO TRY TO SUPPLEMENT

4316
02:22:23,969 --> 02:22:24,836
WHAT WE ALREADY HAD.

4317
02:22:24,836 --> 02:22:26,371
ANY OTHER COMMENTS FROM THE

4318
02:22:26,371 --> 02:22:28,840
COMMITTEE?

4319
02:22:28,840 --> 02:22:30,809
>> I JUST WANTED TO SAY I
ALSO

4320
02:22:30,809 --> 02:22:32,210
THINK IT MAKES SENSE TO TRY AND

4321
02:22:32,210 --> 02:22:34,980
JUST KICK IT BACK FOR A SHORT

4322
02:22:34,980 --> 02:22:35,213
REVIEW.

4323
02:22:35,213 --> 02:22:36,381
>> WITH THE PREVIOUS
WORKING

4324
02:22:36,381 --> 02:22:36,581
GROUP?

4325
02:22:36,581 --> 02:22:37,182
>> YEAH.

4326
02:22:37,182 --> 02:22:37,582
>> OKAY.

4327
02:22:37,582 --> 02:22:38,683
THANK YOU.

4328
02:22:38,683 --> 02:22:39,651
ALL RIGHT.

4329
02:22:39,651 --> 02:22:41,753
WE'LL SEE IF WE CAN WORK A STEP

4330
02:22:41,753 --> 02:22:45,791
IN THERE TO DO THAT TOO.

4331
02:22:45,791 --> 02:22:47,325
BUT I THINK WE'LL GET THE

4332
02:22:47,325 --> 02:22:48,427
COMMITTEE'S FEEDBACK FIRST SO WE

4333
02:22:48,427 --> 02:22:49,928
CAN TRY TO MAKE IT THE BEST

4334
02:22:49,928 --> 02:22:51,229
DRAFT WE CAN GET BEFORE WE DO

4335
02:22:51,229 --> 02:22:51,430
THAT.

4336
02:22:51,430 --> 02:22:53,165
>> AND I THINK WE COULD
ALSO

4337
02:22:53,165 --> 02:22:55,634
GIVE THEM TARGETED INSTRUCTIONS

4338
02:22:55,634 --> 02:22:57,702
TO NOT SORT OF START OVER BUT I

4339
02:22:57,702 --> 02:22:59,371
THINK WE CAN SORT OF FOCUS IT

4340
02:22:59,371 --> 02:23:00,105
AROUND MAKING SURE THAT THE

4341
02:23:00,105 --> 02:23:01,973
UPDATES IN THEIR CONTENT AREA IN

4342
02:23:01,973 --> 02:23:04,042
TERMS OF SORT OF THE ADVANCES IN

4343
02:23:04,042 --> 02:23:05,777
THE LITERATURE OR KNOWLEDGE

4344
02:23:05,777 --> 02:23:07,846
SINCE THE TIME OF THE WORKSHOP

4345
02:23:07,846 --> 02:23:09,047
SORT OF REFLECTS THEIR

4346
02:23:09,047 --> 02:23:10,048
UNDERSTANDING OF THE UPDATES IN

4347
02:23:10,048 --> 02:23:11,716
THAT AREA, AND THEN WE CAN GET

4348
02:23:11,716 --> 02:23:13,752
MORE TARGETED FEEDBACK FROM THEM

4349
02:23:13,752 --> 02:23:17,456
AS OPPOSED TO LEAVING IT WIDE

4350
02:23:17,456 --> 02:23:18,590
OPEN FOR CHANGES OR EDITS.

4351
02:23:18,590 --> 02:23:19,424
>> EXACTLY.

4352
02:23:19,424 --> 02:23:21,193
AND UNDERSTANDING THAT EACH

4353
02:23:21,193 --> 02:23:25,564
SECTION CAN'T BE A AN ENTIRE

4354
02:23:25,564 --> 02:23:26,865
REVIEW OF THE ENTIRE FIELD

4355
02:23:26,865 --> 02:23:28,400
BECAUSE OTHERWISE IT WOULD BE

4356
02:23:28,400 --> 02:23:29,367
MAYBE A THOUSAND PAGE DOCUMENT

4357
02:23:29,367 --> 02:23:32,537
WHICH WE DON'T REALLY WANT TO

4358
02:23:32,537 --> 02:23:32,771
HAVE --

4359
02:23:32,771 --> 02:23:34,840
>> I LIKE THAT IDEA AND I
THINK

4360
02:23:34,840 --> 02:23:36,575
THE ONLY OTHER WORD I'M GOING TO

4361
02:23:36,575 --> 02:23:38,710
THROW OUT IS TIMELINE, LIKE LOOK

4362
02:23:38,710 --> 02:23:40,045
AT YOUR TIMELINE AND SEE, IF

4363
02:23:40,045 --> 02:23:41,079
WE'RE TRYING TO GET THIS DONE

4364
02:23:41,079 --> 02:23:42,681
WITHIN A CERTAIN AMOUNT OF TIME,

4365
02:23:42,681 --> 02:23:44,549
IS THERE TIME TO DO THAT?

4366
02:23:44,549 --> 02:23:46,318
I HOPE THAT THERE IS.

4367
02:23:46,318 --> 02:23:47,652
BUT I THINK IT'S ALSO GOING TO

4368
02:23:47,652 --> 02:23:49,221
DEPEND ON THE FEEDBACK THAT YOU

4369
02:23:49,221 --> 02:23:51,156
GET BACK FROM US AS WELL.

4370
02:23:51,156 --> 02:23:52,457
SO A LOT OF MOVING PARTS, BUT

4371
02:23:52,457 --> 02:23:54,392
I'M NOT OPPOSED TO THEM LOOKING

4372
02:23:54,392 --> 02:23:55,494
AT IT.

4373
02:23:55,494 --> 02:23:56,795
>> WONDERFUL, THANK YOU.

4374
02:23:56,795 --> 02:23:58,029
SO THIS IS GOOD FEEDBACK.

4375
02:23:58,029 --> 02:24:00,165
WE'LL TAKE THIS ALL INTO

4376
02:24:00,165 --> 02:24:00,765
CONSIDERATION, SO YOU'LL BE

4377
02:24:00,765 --> 02:24:01,633
HEARING FROM US AND LIKE WE

4378
02:24:01,633 --> 02:24:03,502
SAID, WE WILL SHARE THE

4379
02:24:03,502 --> 02:24:05,604
DIFFERENT DRAFT ON THE WEB.

4380
02:24:05,604 --> 02:24:06,538
WE'LL CREATE A PAIM FOR IT SO

4381
02:24:06,538 --> 02:24:10,375
PAGE FOR IT ONTHE WEB SO THE PUP

4382
02:24:10,375 --> 02:24:11,476
UP WITH IT EVEN THOUGH WE WON'T

4383
02:24:11,476 --> 02:24:12,811
BE HAVING FULL COMMITTEE

4384
02:24:12,811 --> 02:24:13,078
MEETINGS.

4385
02:24:13,078 --> 02:24:13,578
ALL RIGHT.

4386
02:24:13,578 --> 02:24:16,214
READY TO MOVE ON TO THE NEXT

4387
02:24:16,214 --> 02:24:23,088
ITEM.

4388
02:24:23,088 --> 02:24:24,189
SO NEXT WE'RE GOING TO TALK

4389
02:24:24,189 --> 02:24:26,825
ABOUT THE 2024 IACC SUMMARY OF

4390
02:24:26,825 --> 02:24:28,326
ADVANCES.

4391
02:24:28,326 --> 02:24:31,096
IACC MEMBERS WILL DISCUSS

4392
02:24:31,096 --> 02:24:32,731
NOMINATIONS RECEIVED TO DATE AT

4393
02:24:32,731 --> 02:24:34,366
TODAY'S MEETING.

4394
02:24:34,366 --> 02:24:36,434
JUST A COUPLE OF REMINDERS, IACC

4395
02:24:36,434 --> 02:24:37,669
MEMBERS CAN CONTINUE TO NOMINATE

4396
02:24:37,669 --> 02:24:39,538
ARTICLES THROUGH THE END OF

4397
02:24:39,538 --> 02:24:39,804
2024.

4398
02:24:39,804 --> 02:24:41,573
SO YOU CAN SEND THEM TO US ON A

4399
02:24:41,573 --> 02:24:42,007
ROLLING BASIS.

4400
02:24:42,007 --> 02:24:46,578
WE'LL IT BE TO SEN CONTINUE TO U

4401
02:24:46,578 --> 02:24:47,479
REMINDERS ASKING FOR

4402
02:24:47,479 --> 02:24:49,447
NOMINATIONS.

4403
02:24:49,447 --> 02:24:50,315
IACC MEMBERS WILL RECEIVE A

4404
02:24:50,315 --> 02:24:51,850
BALLOT TO VOTE FOR THE TOP 20

4405
02:24:51,850 --> 02:24:53,351
ADVANCES IN JANUARY OF 2025,

4406
02:24:53,351 --> 02:24:55,353
WHICH WOULD BE WITHIN THE

4407
02:24:55,353 --> 02:24:55,787
EXTENSION PERIOD.

4408
02:24:55,787 --> 02:24:57,689
OF COURSE ASSUMING THAT THE

4409
02:24:57,689 --> 02:25:01,259
CARES ACT IS RE-AUTHORIZED.

4410
02:25:01,259 --> 02:25:02,861
AND WE ALSO WANTED TO ASK YOU IF

4411
02:25:02,861 --> 02:25:04,396
IACC MEMBERS MAY WISH TO HAVE A

4412
02:25:04,396 --> 02:25:07,265
BRIEF VIRTUAL MEETING IN JANUARN

4413
02:25:07,265 --> 02:25:11,203
OPPORTUNITY TO DISCUSS THE

4414
02:25:11,203 --> 02:25:21,646
NOMINATIONS BEFORE VOTING.

4415
02:25:36,194 --> 02:25:36,361
OKAY.

4416
02:25:36,361 --> 02:25:39,831
SO I JUST WANTED TO ASK YOU, ARE

4417
02:25:39,831 --> 02:25:41,266
YOU INTERESTED IN HAVING A BRIEF

4418
02:25:41,266 --> 02:25:43,668
VIRTUAL MEETING IN 2025 TO TALK

4419
02:25:43,668 --> 02:25:49,908
ABOUT THE NOMINATIONS?

4420
02:25:49,908 --> 02:25:52,410
YES, GO AHEAD.

4421
02:25:52,410 --> 02:25:53,712
AND YOU CAN RAISE YOUR HANDS ON

4422
02:25:53,712 --> 02:25:55,547
ZOOM TOO IF YOU'RE IN FAVOR OF

4423
02:25:55,547 --> 02:25:57,082
HAVING A VIRTUAL MEETING TO TALK

4424
02:25:57,082 --> 02:26:03,121
ABOUT NOMINATIONS?

4425
02:26:03,121 --> 02:26:08,059
OR IS THERE A POLL?

4426
02:26:08,059 --> 02:26:08,860
SORRY.

4427
02:26:08,860 --> 02:26:10,095
LOOKS LIKE THE MAJORITY IN THE

4428
02:26:10,095 --> 02:26:12,030
ROOM ARE INTERESTED.

4429
02:26:12,030 --> 02:26:14,366
AND I'M SEEING HANDS RAISED ON

4430
02:26:14,366 --> 02:26:19,270
ZOOM AS WELL.

4431
02:26:19,270 --> 02:26:20,872
I THINK THAT IT LOOKS LIKE WE'RE

4432
02:26:20,872 --> 02:26:23,074
PRETTY SAFE IN SAYING THAT THE

4433
02:26:23,074 --> 02:26:25,010
MAJORITY IS INTERESTED IN HAVING

4434
02:26:25,010 --> 02:26:26,311
A ZOOM MEETING TO TALK ABOUT

4435
02:26:26,311 --> 02:26:26,544
THAT.

4436
02:26:26,544 --> 02:26:30,248
SO WE CAN DO THAT.

4437
02:26:30,248 --> 02:26:32,217
AND SHELLI, I'M HEARING THE

4438
02:26:32,217 --> 02:26:33,118
RECOMMENDATION, GIVEN THAT WE'RE

4439
02:26:33,118 --> 02:26:36,621
OVER TIME, THAT WE COULD DEFER

4440
02:26:36,621 --> 02:26:39,257
DISCUSSION OF THE 2024

4441
02:26:39,257 --> 02:26:40,492
NOMINATIONS THAT HAVE BEEN

4442
02:26:40,492 --> 02:26:41,259
RECEIVED, OR WE COULD TRY TO

4443
02:26:41,259 --> 02:26:42,694
HAVE A BRIEF DISCUSSION.

4444
02:26:42,694 --> 02:26:43,895
WHAT WOULD THE COMMITTEE LIKE TO

4445
02:26:43,895 --> 02:26:46,498
DO?

4446
02:26:46,498 --> 02:26:49,834
SO WE HAD WHAT, 27, 28

4447
02:26:49,834 --> 02:26:50,302
NOMINATIONS?

4448
02:26:50,302 --> 02:26:52,270
28 NOMINATIONS THAT CAME IN.

4449
02:26:52,270 --> 02:26:54,472
WOULD YOU LIKE TO DISCUSS THAT

4450
02:26:54,472 --> 02:26:56,641
NOW BRIEFLY OR WOULD YOU LIKE TO

4451
02:26:56,641 --> 02:26:59,911
DEFER UNTIL WE MEET IN

4452
02:26:59,911 --> 02:27:00,779
POTENTIALLY JANUARY OR WE COULD

4453
02:27:00,779 --> 02:27:04,549
EVEN HAVE ANOTHER ZOOM MEETING.

4454
02:27:04,549 --> 02:27:08,153
>> I GUESS I WOULD SUGGEST
THAT

4455
02:27:08,153 --> 02:27:10,355
IF WE'RE GOING TO MEET, THAT

4456
02:27:10,355 --> 02:27:13,491
WOULD -- AND WE WOULD HAVE A

4457
02:27:13,491 --> 02:27:14,793
MORE ROBUST LIST AT THAT TIME,

4458
02:27:14,793 --> 02:27:15,894
WE COULD CONSOLIDATE THAT

4459
02:27:15,894 --> 02:27:16,194
DISCUSSION.

4460
02:27:16,194 --> 02:27:19,597
>> OKAY.

4461
02:27:19,597 --> 02:27:20,899
DOES EVERYONE FEEL COMFORTABLE

4462
02:27:20,899 --> 02:27:22,767
WITH THAT IDEA DEFERRING?

4463
02:27:22,767 --> 02:27:24,636
WE'LL JUST CONTINUE TO TAKE IN

4464
02:27:24,636 --> 02:27:26,805
NOMINATIONS OVER THE TIME

4465
02:27:26,805 --> 02:27:28,106
PERIOD, SO PLEASE DO SEND US

4466
02:27:28,106 --> 02:27:28,406
NOMINATIONS.

4467
02:27:28,406 --> 02:27:29,607
WE WANT COVERAGE OF ALL SEVEN

4468
02:27:29,607 --> 02:27:32,343
AREAS OF THE STRATEGIC PLAN PLUS

4469
02:27:32,343 --> 02:27:35,313
THE TWO ADDITIONAL AREAS WE'VE

4470
02:27:35,313 --> 02:27:37,482
ADDED, SO PLEASE ADD ITEMS FROM

4471
02:27:37,482 --> 02:27:43,288
WITHIN YOUR EXPERTISE AND/OR

4472
02:27:43,288 --> 02:27:44,589
OTHER ITEMS OF INTEREST THAT YOU

4473
02:27:44,589 --> 02:27:45,557
RUN ACROSS IN YOUR WORK.

4474
02:27:45,557 --> 02:27:50,395
SO THEN WITH THAT, WE'RE NOT

4475
02:27:50,395 --> 02:27:58,336
DISCUSSING THAT.

4476
02:27:58,336 --> 02:27:58,536
OKAY.

4477
02:27:58,536 --> 02:28:01,306
SO I THINK THAT WE WILL BE ABLE

4478
02:28:01,306 --> 02:28:03,274
TO MOVE THEN TO OUR LUNCH.

4479
02:28:03,274 --> 02:28:05,210
SO THAT YOU ARE ON TIME FOR

4480
02:28:05,210 --> 02:28:06,911
LUNCH AND THEN WE WILL RECONVENE

4481
02:28:06,911 --> 02:28:09,280
AFTER THAT.

4482
02:28:09,280 --> 02:28:11,082
SO IT'S MY JOB TO WELCOME YOU

4483
02:28:11,082 --> 02:28:12,183
BACK FROM LUNCH.

4484
02:28:12,183 --> 02:28:15,987
HOPE YOU ALL HAD A NICE BIT OF A

4485
02:28:15,987 --> 02:28:16,688
BREAK.

4486
02:28:16,688 --> 02:28:20,058
AND WE'RE HAPPY TO NOW TURN TO

4487
02:28:20,058 --> 02:28:22,660
THE ORAL COMMENT SECTION OF OUR

4488
02:28:22,660 --> 02:28:23,995
MEETING TODAY, THE PUBLIC

4489
02:28:23,995 --> 02:28:26,998
COMMENT SECTION.

4490
02:28:26,998 --> 02:28:27,999
WE WILL START WITH ORAL

4491
02:28:27,999 --> 02:28:30,068
COMMENTS, AND FIRST ON THE LIST

4492
02:28:30,068 --> 02:28:35,240
IS JACKIE KANCIR.

4493
02:28:35,240 --> 02:28:37,075
>> HI.

4494
02:28:37,075 --> 02:28:39,043
THANK YOU FOR THE TIME TO SPEAK

4495
02:28:39,043 --> 02:28:43,481
ON BEHALF OF NCSA ON THE

4496
02:28:43,481 --> 02:28:44,416
CRITICALLISH YOU'VE CAREGIVING

4497
02:28:44,416 --> 02:28:46,217
FROM THE HIGHEST SUPPORT LENS.

4498
02:28:46,217 --> 02:28:48,486
OUR REALITY IS LIVING IN A

4499
02:28:48,486 --> 02:28:49,587
PERSISTENT STATE OF CRISIS.

4500
02:28:49,587 --> 02:28:53,091
WE FACE INTENSE BEHAVIORS THAT

4501
02:28:53,091 --> 02:28:56,094
REQUIRE -- ENTIRE FAMILY.

4502
02:28:56,094 --> 02:29:02,667
THE -- LEFT WHOLLY TO PARENTS

4503
02:29:02,667 --> 02:29:05,737
DUE TO HCVS WAIVERS THAT

4504
02:29:05,737 --> 02:29:07,138
PROMISED BUT NEVER DELIVERED.

4505
02:29:07,138 --> 02:29:08,540
OUR FOUNDER PERISHED IN A FIRE

4506
02:29:08,540 --> 02:29:09,874
SHE COULD HAVE ESCAPED.

4507
02:29:09,874 --> 02:29:11,409
SHE WAS FOUND WITH HER ARMS

4508
02:29:11,409 --> 02:29:12,777
WRAPPED AROUND HER SON.

4509
02:29:12,777 --> 02:29:14,746
WITH SEVERE AUTISM, HE COULD NOT

4510
02:29:14,746 --> 02:29:16,948
BE CONVINCED TO FLEE.

4511
02:29:16,948 --> 02:29:19,317
THE RECENT MOVEMENTS IN

4512
02:29:19,317 --> 02:29:20,952
CAREGIVER SUPPORT ARE

4513
02:29:20,952 --> 02:29:21,386
ENCOURAGING.

4514
02:29:21,386 --> 02:29:23,788
MOST ARE TARGETED AT SENIORS

4515
02:29:23,788 --> 02:29:27,692
REQUIRING ON AVERAGE CARE LESS

4516
02:29:27,692 --> 02:29:28,593
THAN FIVE YEARS.

4517
02:29:28,593 --> 02:29:31,863
THE CAREGIVERS I REPRESENT MAY

4518
02:29:31,863 --> 02:29:33,097
SERVE THIS ROLE FOR FIVE DECADES

4519
02:29:33,097 --> 02:29:35,700
OR MORE IN CONSTANT SURVIVAL

4520
02:29:35,700 --> 02:29:35,900
MODE.

4521
02:29:35,900 --> 02:29:37,502
SOME SAY YOU CAN'T POUR FROM AN

4522
02:29:37,502 --> 02:29:39,704
EMPTY CUP, BUT THEY DO.

4523
02:29:39,704 --> 02:29:41,973
THEY MUST FILL THE ROLE OF AN

4524
02:29:41,973 --> 02:29:44,475
ENTIRE BIOPSYCHOSOCIAL

4525
02:29:44,475 --> 02:29:45,143
MULTIDISCIPLINARY TEAM FOR

4526
02:29:45,143 --> 02:29:47,345
DECADES ON END, YET THEY STAND

4527
02:29:47,345 --> 02:29:49,147
UTTERLY ALONE OVER PILES OF

4528
02:29:49,147 --> 02:29:50,148
DENIALS.

4529
02:29:50,148 --> 02:29:55,720
AND THEN THEY'RETIONED FROM THEM

4530
02:29:55,720 --> 02:29:58,456
SHARING THEIR AUTHENTIC

4531
02:29:58,456 --> 02:30:00,525
REALITIES.

4532
02:30:00,525 --> 02:30:02,393
WE RECOMMEND AUTHORIZING A

4533
02:30:02,393 --> 02:30:03,761
REPORT AND DEVELOP A STRATEGIC

4534
02:30:03,761 --> 02:30:05,563
PLAN OUTLINING THE SOLUTIONS TO

4535
02:30:05,563 --> 02:30:06,931
SECURE THE WELL-BEING OF FAMILY

4536
02:30:06,931 --> 02:30:08,900
CAREGIVERS INCLUDING DISTINCT

4537
02:30:08,900 --> 02:30:10,301
ANALYSIS WITH A PROFOUND AUTISM

4538
02:30:10,301 --> 02:30:10,969
POPULATION.

4539
02:30:10,969 --> 02:30:13,571
EXPLORE CAREGIVER PHYSICAL AND

4540
02:30:13,571 --> 02:30:14,772
MENTAL HEALTH, FINANCIAL

4541
02:30:14,772 --> 02:30:17,041
STABILITY, EDUCATIONAL AND

4542
02:30:17,041 --> 02:30:19,510
VOCATIONAL OPPORTUNITIES, AND

4543
02:30:19,510 --> 02:30:21,646
FOOD AND HOUSING SECURITY.

4544
02:30:21,646 --> 02:30:23,481
WE ALSO URGE IACC TO SECURE

4545
02:30:23,481 --> 02:30:25,083
SEATS FOR PARENTS WITH

4546
02:30:25,083 --> 02:30:27,252
EXPERIENCE IN THIS UNIQUE WORLD

4547
02:30:27,252 --> 02:30:29,888
WHO ARE VERY LOW ADAPTIVE

4548
02:30:29,888 --> 02:30:30,455
FUNCTIONING COLLIDES WITH

4549
02:30:30,455 --> 02:30:31,856
INTENSE AND OFTEN DANGEROUS

4550
02:30:31,856 --> 02:30:32,290
BEHAVIORS.

4551
02:30:32,290 --> 02:30:34,359
A WORLD NO ONE SHOULD BE LEFT TO

4552
02:30:34,359 --> 02:30:37,095
NAVIGATE ALONE.

4553
02:30:37,095 --> 02:30:38,696
IN HER LAST INTERVIEW SHORTLY

4554
02:30:38,696 --> 02:30:40,665
BEFORE THE FIRE, SHE SAID, I

4555
02:30:40,665 --> 02:30:42,433
QUOTE, I DIDN'T WANT PARENTS TO

4556
02:30:42,433 --> 02:30:43,635
SUFFER LIKE I DID.

4557
02:30:43,635 --> 02:30:45,570
I JUST DIDN'T WANT ONE MORE MOM

4558
02:30:45,570 --> 02:30:47,205
OR DAD TO GO THROUGH WHAT I WENT

4559
02:30:47,205 --> 02:30:49,407
THROUGH.

4560
02:30:49,407 --> 02:30:54,646
NCSA CARRIES HER VOICE WITH US.

4561
02:30:54,646 --> 02:30:58,917
THANK YOU.

4562
02:30:58,917 --> 02:31:00,652
>> THANK YOU VERY MUCH,
JACKIE,

4563
02:31:00,652 --> 02:31:01,953
FOR SHARING.

4564
02:31:01,953 --> 02:31:06,424
AND NEXT UP IS AMANDA LOPEZ FROM

4565
02:31:06,424 --> 02:31:13,531
SAM'S SIBS STICK TOGETHER.

4566
02:31:13,531 --> 02:31:14,499
>> GOOD AFTERNOON.

4567
02:31:14,499 --> 02:31:16,134
MY NAME IS AMANDA LOPEZ.

4568
02:31:16,134 --> 02:31:17,335
I'M A SPEECH LANGUAGE

4569
02:31:17,335 --> 02:31:19,871
PATHOLOGIST WORKING AT THE

4570
02:31:19,871 --> 02:31:21,105
AUTISM FOUNDATION IN JUPYTER,

4571
02:31:21,105 --> 02:31:23,107
FLORIDA AND I'M A PANELIST ON

4572
02:31:23,107 --> 02:31:28,379
SAM'S SIBS STICK TOGETHER.

4573
02:31:28,379 --> 02:31:29,747
I'M REQUESTING TO SPEAK WITH YOU

4574
02:31:29,747 --> 02:31:31,749
ABOUT THE NEEDS ABOUT SIBLINGS

4575
02:31:31,749 --> 02:31:34,686
LIKE MY SE. MY EARLIEST MEMORIES

4576
02:31:34,686 --> 02:31:38,957
AFTER MY BROTHER -- YOUNGER ME

4577
02:31:38,957 --> 02:31:40,925
KNEW WHEN MY PARENTS NO LONGER

4578
02:31:40,925 --> 02:31:43,628
COULD SUPPORTING AND ADVOCATING

4579
02:31:43,628 --> 02:31:45,463
FOR JUROR GEE WOULD BE MY ROLE.

4580
02:31:45,463 --> 02:31:47,498
IT'S A LOT FOR A CHILD TO THINK

4581
02:31:47,498 --> 02:31:48,433
ABOUT BUT NOT UNCOMMON FOR

4582
02:31:48,433 --> 02:31:49,634
SIBLINGS LIKE ME.

4583
02:31:49,634 --> 02:31:52,270
THE SAM SIBS STICK TOGETHER ROOM

4584
02:31:52,270 --> 02:31:54,172
BEGAN AS A VIRTUAL SIBLING

4585
02:31:54,172 --> 02:31:55,840
SUPPORT GROUP DEVELOPED

4586
02:31:55,840 --> 02:31:57,375
ESSENTIALLY OVERNIGHT AT THE

4587
02:31:57,375 --> 02:32:00,645
START OF THE COVID-19 PANDEMIC.

4588
02:32:00,645 --> 02:32:05,650
DR. KIMBERLY RAVICHIO AND

4589
02:32:05,650 --> 02:32:07,285
DR. AARON BURG WITS SAW THE NEED

4590
02:32:07,285 --> 02:32:10,355
TO SUPPORT SIBLINGS.

4591
02:32:10,355 --> 02:32:11,990
THE GROUP BEGAN AND CREATED A

4592
02:32:11,990 --> 02:32:13,725
SPACE FOR SCHOOL AGE SIBLINGS TO

4593
02:32:13,725 --> 02:32:15,026
MEET AND TALK ABOUT THEIR SHARED

4594
02:32:15,026 --> 02:32:15,493
EXPERIENCES.

4595
02:32:15,493 --> 02:32:17,628
SHE WELCOMED ADULT PARTICIPANTS

4596
02:32:17,628 --> 02:32:18,129
TO JOIN AND SHARE THEIR

4597
02:32:18,129 --> 02:32:18,429
EXPERIENCES.

4598
02:32:18,429 --> 02:32:19,497
I WAS ONE OF THEM.

4599
02:32:19,497 --> 02:32:20,932
THINKING BACK I HAD NEVER MET

4600
02:32:20,932 --> 02:32:22,967
ANOTHER CHILD MY AGE WITH AN

4601
02:32:22,967 --> 02:32:24,235
AUTISTIC SIBLING LET ALONE LIKE

4602
02:32:24,235 --> 02:32:24,702
MY BROTHER.

4603
02:32:24,702 --> 02:32:26,471
AND IT WAS SO SPECIAL TO SEE IN

4604
02:32:26,471 --> 02:32:28,306
THIS WELCOMING THOUGHTFUL SPACE

4605
02:32:28,306 --> 02:32:29,407
THESE KIDS HAD THE OPPORTUNITY

4606
02:32:29,407 --> 02:32:32,143
TO SPEAK FREELY, ASK QUESTIONS,

4607
02:32:32,143 --> 02:32:34,412
AND LISTEN TO EACH OTHER, SHARE

4608
02:32:34,412 --> 02:32:35,046
EXPERIENCES ONLY THEY COULD

4609
02:32:35,046 --> 02:32:37,348
RELATE TO.

4610
02:32:37,348 --> 02:32:38,783
SHORTLY AFTER IN COLLABORATION

4611
02:32:38,783 --> 02:32:40,685
WITH ALISHA HOLIDAY AND THE

4612
02:32:40,685 --> 02:32:42,153
AUTISM SCIENCE FOUNDATION, A

4613
02:32:42,153 --> 02:32:44,655
WEBINAR SERIES MODERATED BY

4614
02:32:44,655 --> 02:32:45,957
SAMANTHA WAS LAUNCHED.

4615
02:32:45,957 --> 02:32:48,226
ADULT SIBLINGS WERE INVITED TO

4616
02:32:48,226 --> 02:32:49,560
JOIN IN DISCUSSIONS ABOUT THE

4617
02:32:49,560 --> 02:32:50,428
SIBLING EXPERIENCE AND THE

4618
02:32:50,428 --> 02:32:51,629
SERIES BEGAN WITH PAMMISTS

4619
02:32:51,629 --> 02:32:55,700
TALKINGPANELISTSTALKING ABOUT TT

4620
02:32:55,700 --> 02:32:58,136
GREW TO INCLUDE RESEARCH

4621
02:32:58,136 --> 02:32:59,203
SURROUNDING THE SIBLING

4622
02:32:59,203 --> 02:33:00,605
RELATIONSHIP, TRANSITION

4623
02:33:00,605 --> 02:33:01,906
PLANNING, AND I FOUND AS I'VE

4624
02:33:01,906 --> 02:33:03,875
GROWN UP AS A SIBLING, MY NEEDS

4625
02:33:03,875 --> 02:33:04,876
HAVE EXPANDED.

4626
02:33:04,876 --> 02:33:06,277
I'M NOW CONSIDERING FUTURE

4627
02:33:06,277 --> 02:33:07,145
PLANNING AS SOMETHING THAT NEEDS

4628
02:33:07,145 --> 02:33:08,046
TO BE DONE RATHER THAN TALKED

4629
02:33:08,046 --> 02:33:08,713
ABOUT.

4630
02:33:08,713 --> 02:33:09,881
I'M CONSIDERING THE PLANS THAT I

4631
02:33:09,881 --> 02:33:11,115
HAVE FOR MY BROTHER, ALONG WITH

4632
02:33:11,115 --> 02:33:12,750
CARING FOR AGING PARENTS.

4633
02:33:12,750 --> 02:33:14,118
AND I NEED SUPPORT IN A

4634
02:33:14,118 --> 02:33:16,754
DIFFERENT WAY THAN I DID.

4635
02:33:16,754 --> 02:33:18,289
CURRENTLY I'M FACILITATING AN

4636
02:33:18,289 --> 02:33:19,657
ADULT SIBLING SUPPORT GROUP WITH

4637
02:33:19,657 --> 02:33:22,226
THE GUIDANCE OF DR. RAVICHIO AND

4638
02:33:22,226 --> 02:33:23,294
IN OUR FIRST MEETING WE

4639
02:33:23,294 --> 02:33:24,028
DEVELOPED GOALS.

4640
02:33:24,028 --> 02:33:24,929
I WANT TO SHARE SOME WITH YOU

4641
02:33:24,929 --> 02:33:26,831
ALL.

4642
02:33:26,831 --> 02:33:28,099
ONE, SHARE IN THE COMMON JOYS

4643
02:33:28,099 --> 02:33:29,967
AND CONCERNS THAT ARE UNIQUE TO

4644
02:33:29,967 --> 02:33:31,803
THE SIBLING RELATIONSHIP.

4645
02:33:31,803 --> 02:33:33,671
PROVIDE A SAFE SPACE TO SHARE

4646
02:33:33,671 --> 02:33:37,275
AND SUPPORT ONE ANOTHER, AND TO

4647
02:33:37,275 --> 02:33:37,809
LEARN MORE.

4648
02:33:37,809 --> 02:33:38,910
LEARN HOW TO TAKE ON THAT

4649
02:33:38,910 --> 02:33:39,644
CAREGIVER ROLE AND HOW TO

4650
02:33:39,644 --> 02:33:42,180
PREPARE FOR THE FUTURE.

4651
02:33:42,180 --> 02:33:44,348
FINAL GOAL SPEAKS TO ONE OF THE

4652
02:33:44,348 --> 02:33:45,650
SUBJECTS OF TODAY'S MEETING,

4653
02:33:45,650 --> 02:33:46,551
FAMILY CAREGIVING.

4654
02:33:46,551 --> 02:33:47,952
MANY SIBLINGS ARE AWARE AT AN

4655
02:33:47,952 --> 02:33:49,253
AGE YOUNGER THAN YOU MAY THINK

4656
02:33:49,253 --> 02:33:50,321
THAT ONE DAY THEY WILL BE THE

4657
02:33:50,321 --> 02:33:52,223
PRIMARY CAREGIVER OF THEY'RE

4658
02:33:52,223 --> 02:33:53,391
SIBLING.

4659
02:33:53,391 --> 02:33:53,624
 THEIR

4660
02:33:53,624 --> 02:33:54,292
SIBLING.

4661
02:33:54,292 --> 02:33:55,159
IT'S DIFFICULT TO FIND RESOURCES

4662
02:33:55,159 --> 02:33:56,260
AND SUPPORT THAT GIVE QUALITY

4663
02:33:56,260 --> 02:33:57,328
INFORMATION ABOUT HOW WE GET TO

4664
02:33:57,328 --> 02:34:01,699
THAT POINT.

4665
02:34:01,699 --> 02:34:03,000
SO CLOSE PARTNERSHIP WITH THE

4666
02:34:03,000 --> 02:34:04,202
AUTISM SCIENCE FOUNDATION HAVE

4667
02:34:04,202 --> 02:34:06,471
CREATED AN INCLUSIVE WEBSITE,

4668
02:34:06,471 --> 02:34:07,538
SAM'S SIBS STICK TOGETHER, AND

4669
02:34:07,538 --> 02:34:10,408
IT OFFERS RESOURCES ON STRESS

4670
02:34:10,408 --> 02:34:11,042
MANAGEMENT, TRANSITION

4671
02:34:11,042 --> 02:34:12,710
INFORMATION, AND IT HOUSES

4672
02:34:12,710 --> 02:34:13,911
QUALITY UP TO DATE RESEARCH

4673
02:34:13,911 --> 02:34:15,513
ABOUT THE SIBLING EXPERIENCE.

4674
02:34:15,513 --> 02:34:17,582
ALL WEBINARS SINCE ITS LAUNCH

4675
02:34:17,582 --> 02:34:18,816
ARE RECORDED AND AVAILABLE, AND

4676
02:34:18,816 --> 02:34:20,084
WE REALLY WANT TO MAXIMIZE OUR

4677
02:34:20,084 --> 02:34:21,519
EFFORTS TO PROVIDE SUPPORT TO

4678
02:34:21,519 --> 02:34:23,154
SIBLINGS IN A SPACE WHERE THEY

4679
02:34:23,154 --> 02:34:24,722
CAN ACCESS QUALITY INFORMATION

4680
02:34:24,722 --> 02:34:26,958
AND JOIN IN ON THESE CRUCIAL

4681
02:34:26,958 --> 02:34:27,291
CONVERSATIONS.

4682
02:34:27,291 --> 02:34:29,393
I WANT TO WELCOME ANY ADULT

4683
02:34:29,393 --> 02:34:30,528
SIBLING THAT WOULD LIKE TO JOIN

4684
02:34:30,528 --> 02:34:31,963
THE SUPPORT GROUP I'M CURRENTLY

4685
02:34:31,963 --> 02:34:32,296
FACILITATING.

4686
02:34:32,296 --> 02:34:35,233
YOU ARE WELCOME ANY TIME.

4687
02:34:35,233 --> 02:34:36,234
REGISTRATION IS ROLLING AND YOU

4688
02:34:36,234 --> 02:34:37,301
CAN FIND THE REGISTRATION LINK

4689
02:34:37,301 --> 02:34:39,804
ON THE HOME SCREEN OF SAM'S SIBS

4690
02:34:39,804 --> 02:34:41,672
STICK TOGETHER.COM.

4691
02:34:41,672 --> 02:34:43,608
I'M THRILLED TO SEE THE WORLD

4692
02:34:43,608 --> 02:34:45,276
RECOGNIZE THE UNIQUE NEEDS AND

4693
02:34:45,276 --> 02:34:46,210
STRENGTHS OF SIBLINGS AND THE

4694
02:34:46,210 --> 02:34:47,445
SUPPORT WE NEED.

4695
02:34:47,445 --> 02:34:52,350
THANK YOU.

4696
02:34:52,350 --> 02:34:53,351
>> THANK YOU, AMANDA, FOR

4697
02:34:53,351 --> 02:34:54,118
JOINING US.

4698
02:34:54,118 --> 02:34:55,620
NOW I'LL TURN IT OVER TO ONI FOR

4699
02:34:55,620 --> 02:35:00,691
THE WRITTEN COMMENTS.

4700
02:35:00,691 --> 02:35:03,060
>> GOOD AFTERNOON,
EVERYONE.

4701
02:35:03,060 --> 02:35:06,564
WE RECEIVED 58 WRITTEN PUBLIC

4702
02:35:06,564 --> 02:35:07,598
COMMENTS ON THE FOLLOWING

4703
02:35:07,598 --> 02:35:08,733
TOPICS.

4704
02:35:08,733 --> 02:35:12,336
WE RECEIVED 47 COMMENTS, I'M

4705
02:35:12,336 --> 02:35:13,538
SORRY, ON THE EXPERIENCES OF

4706
02:35:13,538 --> 02:35:16,207
FAMILY CAREGIVERS AND THE NEEDS

4707
02:35:16,207 --> 02:35:17,275
OF AUTISTIC INDIVIDUALS WITH

4708
02:35:17,275 --> 02:35:18,342
HIGH SUPPORT NEEDS.

4709
02:35:18,342 --> 02:35:19,777
AND THE NAMES OF THOSE

4710
02:35:19,777 --> 02:35:21,179
COMMENTERS ARE LISTED ON THE

4711
02:35:21,179 --> 02:35:23,247
SLIDE.

4712
02:35:23,247 --> 02:35:26,117
WE RECEIVED SIX COMMENTS ON THE

4713
02:35:26,117 --> 02:35:28,019
TOPIC OF RESEARCH AND SERVICE

4714
02:35:28,019 --> 02:35:30,688
NEEDS, RESOURCES AND POLICY

4715
02:35:30,688 --> 02:35:31,222
IMPLICATIONS.

4716
02:35:31,222 --> 02:35:32,857
ONE COMMENT ON THE TOPIC OF

4717
02:35:32,857 --> 02:35:34,358
INCLUSION OF AUTISTIC

4718
02:35:34,358 --> 02:35:36,761
PERSPECTIVES AND RESEARCH.

4719
02:35:36,761 --> 02:35:38,629
TWO COMMENTS ON THE ROLE OF THE

4720
02:35:38,629 --> 02:35:42,433
IACC AND THE FEDERAL GOVERNMENT.

4721
02:35:42,433 --> 02:35:43,634
AND TWO COMMENTS ON THE TOPIC OF

4722
02:35:43,634 --> 02:35:47,171
POTENTIAL CAUSES OF AUTISM.

4723
02:35:47,171 --> 02:35:48,573
THE FULL PACKET OF PUBLIC

4724
02:35:48,573 --> 02:35:51,709
COMMENTS IS AVAILABLE ON OUR

4725
02:35:51,709 --> 02:35:51,943
WEBSITE.

4726
02:35:51,943 --> 02:35:57,548
AT THE LINK LISTED ON THE SLIDE.

4727
02:35:57,548 --> 02:35:59,383
>> THANK YOU, ONI.

4728
02:35:59,383 --> 02:36:00,785
SO NOW WE WANT TO OPEN IT UP TO

4729
02:36:00,785 --> 02:36:02,753
ALL OF YOU IF THERE ARE COMMENTS

4730
02:36:02,753 --> 02:36:04,188
OR RESPONSES TO ANYTHING THAT

4731
02:36:04,188 --> 02:36:05,790
YOU'VE HEARD TODAY.

4732
02:36:05,790 --> 02:36:07,091
DENA, I SEE YOUR HAND UP.

4733
02:36:07,091 --> 02:36:08,626
SUSAN, YOU'LL HAVE TO HELP WITH

4734
02:36:08,626 --> 02:36:09,961
WHO'S IN THE ROOM.

4735
02:36:09,961 --> 02:36:11,896
>> HI, THANK YOU SO MUCH.

4736
02:36:11,896 --> 02:36:15,199
I DID WANT TO MENTION, AND I'M

4737
02:36:15,199 --> 02:36:17,602
SORRY AGAIN I'M MULTITASKING,

4738
02:36:17,602 --> 02:36:18,336
BUT THE SECOND SPEAKER, IF

4739
02:36:18,336 --> 02:36:21,739
YOU'RE UNAWARE OF IT, THE ARC US

4740
02:36:21,739 --> 02:36:24,442
ALSO HAS A NATIONAL SIBLING

4741
02:36:24,442 --> 02:36:25,876
COUNCIL, AND I SEE AN

4742
02:36:25,876 --> 02:36:26,978
OPPORTUNITY FOR GREAT

4743
02:36:26,978 --> 02:36:27,612
COLLABORATION THERE.

4744
02:36:27,612 --> 02:36:28,646
SO I JUST WANTED TO MENTION

4745
02:36:28,646 --> 02:36:29,580
THAT.

4746
02:36:29,580 --> 02:36:31,883
AND THEN I DID WANT TO REITERATE

4747
02:36:31,883 --> 02:36:35,620
SOMETHING THAT CONTINUES TO BE A

4748
02:36:35,620 --> 02:36:36,687
MISCOMMUNICATION,

4749
02:36:36,687 --> 02:36:38,222
MISUNDERSTANDING, BUT THERE ARE

4750
02:36:38,222 --> 02:36:40,157
SEVERAL MEMBERS OF THE CURRENT

4751
02:36:40,157 --> 02:36:44,095
IACC WHO HAVE DIRECT PARENTING

4752
02:36:44,095 --> 02:36:45,830
EXPERIENCE OF CARING FOR PEOPLE

4753
02:36:45,830 --> 02:36:50,101
WHO HAVE HIGH SUPPORT NEEDS.

4754
02:36:50,101 --> 02:36:52,737
I'M AFRAID PEOPLE ARE GETTING

4755
02:36:52,737 --> 02:36:54,272
THE IDEA THAT THERE'S

4756
02:36:54,272 --> 02:36:54,905
INSUFFICIENT REPRESENTATION FOR

4757
02:36:54,905 --> 02:36:56,574
PEOPLE WITH HIGH SUPPORT NEEDS,

4758
02:36:56,574 --> 02:36:57,675
BUT SEVERAL OF OUR MEMBERS ARE

4759
02:36:57,675 --> 02:36:59,777
GOING TO BE SPEAKING THIS

4760
02:36:59,777 --> 02:37:01,178
AFTERNOON, AND THEY ALSO

4761
02:37:01,178 --> 02:37:03,214
REPRESENT THE NEEDS OF HIGH

4762
02:37:03,214 --> 02:37:04,649
SUPPORT DEMAND PERSONS.

4763
02:37:04,649 --> 02:37:06,083
SO I JUST WANT TO MAKE SURE THE

4764
02:37:06,083 --> 02:37:09,787
PUBLIC IS AWARE THAT WE DO HAVE

4765
02:37:09,787 --> 02:37:12,223
CONSIDERABLE REPRESENTATION OF

4766
02:37:12,223 --> 02:37:14,592
AN ARRAY OF AUTISM NEEDS

4767
02:37:14,592 --> 02:37:16,560
REPRESENTED BY DIRECT CAREGIVING

4768
02:37:16,560 --> 02:37:18,529
EXPERIENCE ON THE COMMITTEE.

4769
02:37:18,529 --> 02:37:20,398
LASTLY, I DID WANT TO SAY THAT

4770
02:37:20,398 --> 02:37:23,134
AS I REVIEWED THE PUBLIC

4771
02:37:23,134 --> 02:37:24,669
COMMENTS, I JUST WANT TO

4772
02:37:24,669 --> 02:37:27,405
EMPHASIZE AS WE GO FORWARD THAT

4773
02:37:27,405 --> 02:37:29,573
WE REMEMBER THE UNIQUE

4774
02:37:29,573 --> 02:37:32,209
CAREGIVING NEEDS OF OTHER

4775
02:37:32,209 --> 02:37:33,044
AUTISTIC PARENTS.

4776
02:37:33,044 --> 02:37:35,246
SO MUCH OF THIS IS BEING

4777
02:37:35,246 --> 02:37:36,547
COMMUNICATED AS THOUGH IT'S A

4778
02:37:36,547 --> 02:37:38,082
BINARY, AS THOUGH IT'S PARENTS

4779
02:37:38,082 --> 02:37:40,584
WHO ARE NON-DISABLED PARENTING

4780
02:37:40,584 --> 02:37:41,886
DISABLED KIDS.

4781
02:37:41,886 --> 02:37:44,622
AND I'M HERE TO SAY AS ONE OF

4782
02:37:44,622 --> 02:37:46,824
THOSE PARENTS THAT, YOU KNOW,

4783
02:37:46,824 --> 02:37:48,225
THE COMMUNICATION BARRIERS WE

4784
02:37:48,225 --> 02:37:50,194
FACE, THE ADMINISTRATIVE BURDEN

4785
02:37:50,194 --> 02:37:52,797
WE FACE NAVIGATING SYSTEMS, THE

4786
02:37:52,797 --> 02:37:55,533
DEMAND FOR SOCIAL ENGAGEMENT AND

4787
02:37:55,533 --> 02:37:59,070
IEP MEETINGS IS AN EXAMPLE IS

4788
02:37:59,070 --> 02:38:02,540
NOT UNLIKE THE BURDEN THAT OTHER

4789
02:38:02,540 --> 02:38:04,909
PARENTS CARRY IN TERMS OF

4790
02:38:04,909 --> 02:38:06,010
NAVIGATING SYSTEMS, BUT WE'RE

4791
02:38:06,010 --> 02:38:07,912
DOING IT WITH AN 80-POUND BAC

4792
02:38:07,912 --> 02:38:08,312
PAC ON.

4793
02:38:08,312 --> 02:38:10,581
WE'RE DOING IT WITH A LOT MORE

4794
02:38:10,581 --> 02:38:11,248
COGNITIVE EFFORT.

4795
02:38:11,248 --> 02:38:12,350
SO I JUST HOPE GOING FORWARD

4796
02:38:12,350 --> 02:38:14,952
THAT WE CAN CONTINUE TO

4797
02:38:14,952 --> 02:38:16,153
PRIORITIZE THE ADDITIONAL NEEDS

4798
02:38:16,153 --> 02:38:19,857
OF PARENTING WHILE DISABLED.

4799
02:38:19,857 --> 02:38:25,029
THANKS.

4800
02:38:25,029 --> 02:38:26,330
>> THANK YOU, DENA.

4801
02:38:26,330 --> 02:38:27,531
OTHER COMMENTS OR QUESTIONS?

4802
02:38:27,531 --> 02:38:28,833
>> WE HAVE A COMMENT IN
THE

4803
02:38:28,833 --> 02:38:29,166
ROOM.

4804
02:38:29,166 --> 02:38:31,469
SAM CRANE.

4805
02:38:31,469 --> 02:38:33,738
>> THIS IS PROBABLY NOT
GOING TO

4806
02:38:33,738 --> 02:38:39,009
BE MY ONLY COMMENT.

4807
02:38:39,009 --> 02:38:41,278
BECAUSE I WANT US TO SORT OF GET

4808
02:38:41,278 --> 02:38:43,047
INTO OTHER TOPICS TOO, BUT

4809
02:38:43,047 --> 02:38:45,983
BEFORE WE SORT OF MOVE ON TO,

4810
02:38:45,983 --> 02:38:49,053
YOU KNOW, WHILE WE'RE TALKING

4811
02:38:49,053 --> 02:38:52,523
ABOUT THE TOPICS THAT DENA WAS

4812
02:38:52,523 --> 02:38:55,826
MENTIONING, I WANTED TO REALLY

4813
02:38:55,826 --> 02:38:57,695
HIGHLIGHT ONE OF THE COMMENTS

4814
02:38:57,695 --> 02:39:00,398
THAT I THINK GOT BURIED AND IT'S

4815
02:39:00,398 --> 02:39:03,667
AN ISSUE THAT'S VERY IMPORTANT

4816
02:39:03,667 --> 02:39:06,771
TO ME, WHICH IS THE LACK OF

4817
02:39:06,771 --> 02:39:08,839
AVAILABILITY OF LEGAL

4818
02:39:08,839 --> 02:39:12,576
REPRESENTATION TO PEOPLE WHO

4819
02:39:12,576 --> 02:39:16,947
DON'T PEEK BUT SPEAK BUT ARE INY

4820
02:39:16,947 --> 02:39:17,281
SETTINGS.

4821
02:39:17,281 --> 02:39:21,185
THE PROTECTION AND ADVOCACY DOES

4822
02:39:21,185 --> 02:39:24,355
HAVE THE ABILITY TO SERVE PEOPLE

4823
02:39:24,355 --> 02:39:25,589
WHO DON'T SPEAK WHO ARE

4824
02:39:25,589 --> 02:39:27,224
EXPERIENCING ABUSE AND NEGLECT

4825
02:39:27,224 --> 02:39:28,225
IN INSTITUTIONAL SETTINGS.

4826
02:39:28,225 --> 02:39:29,427
BUT NOW THAT WE ARE SEEING MORE

4827
02:39:29,427 --> 02:39:30,161
AND MORE PEOPLE IN THE

4828
02:39:30,161 --> 02:39:31,028
COMMUNITY, WHICH IS A REALLY

4829
02:39:31,028 --> 02:39:34,665
GOOD THING, IT'S REALLY

4830
02:39:34,665 --> 02:39:36,500
IMPORTANT THAT THE PROTECTION

4831
02:39:36,500 --> 02:39:39,670
AND ADVOCACY SYSTEM BE GIVEN THE

4832
02:39:39,670 --> 02:39:42,640
ABILITY TO VISIT COMMUNITY-BASED

4833
02:39:42,640 --> 02:39:45,075
SETTINGS AND THE MANDATE TO

4834
02:39:45,075 --> 02:39:48,412
VISIT COMMUNITY-BASED SETTINGS

4835
02:39:48,412 --> 02:39:51,715
FOR SITUATIONS WHERE SOMEONE IS

4836
02:39:51,715 --> 02:39:53,250
NON-SPEAKING, NOT ABLE TO

4837
02:39:53,250 --> 02:39:56,087
COMMUNICATE VERBALLY AND MIGHT

4838
02:39:56,087 --> 02:40:00,357
NOT OTHERWISE BE ABLE TO CONTACT

4839
02:40:00,357 --> 02:40:01,459
THE PNAs.

4840
02:40:01,459 --> 02:40:04,361
I KNOW IT MAKES PERFECT SENSE TO

4841
02:40:04,361 --> 02:40:06,030
ME THAT THE PNAs SHOULD IN

4842
02:40:06,030 --> 02:40:09,333
GENERAL BE RESPONDING TO THE

4843
02:40:09,333 --> 02:40:13,471
NEEDS OF PEOPLE -- YOU KNOW, THE

4844
02:40:13,471 --> 02:40:14,905
PERSON WITH A DISABILITY AS A

4845
02:40:14,905 --> 02:40:17,975
DIRECT CLIEN CLIENT AND MAKING E

4846
02:40:17,975 --> 02:40:19,410
THAT THE PERSON WITH A

4847
02:40:19,410 --> 02:40:20,377
DISABILITY EXPRESSES INTEREST IN

4848
02:40:20,377 --> 02:40:25,516
HAVING HELP, BUT THAT'S NOT

4849
02:40:25,516 --> 02:40:27,384
USUALLY A REQUIREMENT FOR

4850
02:40:27,384 --> 02:40:29,119
VISITING, MONITORING FOR ABUSE

4851
02:40:29,119 --> 02:40:31,388
AND NEGLECT IN INSTITUTIONAL

4852
02:40:31,388 --> 02:40:32,389
SETTINGS, WHICH IS SOMETHING

4853
02:40:32,389 --> 02:40:35,659
THAT THE PNAs HAVE.

4854
02:40:35,659 --> 02:40:35,960
 THE MANDATE

4855
02:40:35,960 --> 02:40:37,428
TO DO, AND I THINK IT IS

4856
02:40:37,428 --> 02:40:39,029
IMPORTANT THAT WE HIGHLIGHT THAT

4857
02:40:39,029 --> 02:40:40,598
THEY NEED TO BE EMPOWERED TO DO

4858
02:40:40,598 --> 02:40:42,366
THAT IN GROUP HOMES AND

4859
02:40:42,366 --> 02:40:47,638
COMMUNITY-BASED SETTINGS TOO.

4860
02:40:47,638 --> 02:40:48,672
>> THANK YOU, SAM.

4861
02:40:48,672 --> 02:40:49,573
MORE COMMENTS FROM THE

4862
02:40:49,573 --> 02:40:49,974
COMMITTEE?

4863
02:40:49,974 --> 02:40:51,642
IN THE ROOM, AND THEN SHELLI IS

4864
02:40:51,642 --> 02:40:54,712
ALSO LOOKING ON ZOOM.

4865
02:40:54,712 --> 02:40:58,349
IVANOVA?

4866
02:40:58,349 --> 02:41:01,619
>> I'D LIKE TO THANK THE
SAM'S

4867
02:41:01,619 --> 02:41:05,556
SIBS FOR THE COMMENTS.

4868
02:41:05,556 --> 02:41:10,127
I THINK SIBLINGS ARE REALLY

4869
02:41:10,127 --> 02:41:10,394
IMPORTANT.

4870
02:41:10,394 --> 02:41:12,329
I JUST HAVE A QUESTION IF

4871
02:41:12,329 --> 02:41:13,330
THEY'RE STILL AROUND, IS WHAT

4872
02:41:13,330 --> 02:41:15,733
ARE SOME WAYS THAT YOU HELP

4873
02:41:15,733 --> 02:41:17,401
SIBLINGS, BOTH THE DISABLED

4874
02:41:17,401 --> 02:41:19,570
SIBLING AND NON-DISABLED SIBLING

4875
02:41:19,570 --> 02:41:22,406
KEEP THAT HEALTHY SIBLING

4876
02:41:22,406 --> 02:41:25,242
RELATIONSHIP, AND NOT LET

4877
02:41:25,242 --> 02:41:28,846
CAREGIVING BECOME SOMETHING THAT

4878
02:41:28,846 --> 02:41:32,783
MAKES THE SIBLING RELATIONSHIP

4879
02:41:32,783 --> 02:41:36,587
TORN, LIKE, YOU KNOW, HOW DO YOU

4880
02:41:36,587 --> 02:41:38,188
HELP -- HOW DO YOU HELP SIBLINGS

4881
02:41:38,188 --> 02:41:40,891
SUPPORT EACH OTHER, STILL SEEING

4882
02:41:40,891 --> 02:41:44,528
EACH OTHER AS SIBLINGS, AND HELP

4883
02:41:44,528 --> 02:41:47,264
WITH THAT POWER DYNAMIC THAT CAN

4884
02:41:47,264 --> 02:41:49,567
HAPPEN AND CAN CAUSE A RIFT IN

4885
02:41:49,567 --> 02:41:51,835
SIBLING AND FAMILY

4886
02:41:51,835 --> 02:41:52,169
RELATIONSHIPS?

4887
02:41:52,169 --> 02:41:55,706
THANK YOU.

4888
02:41:55,706 --> 02:41:57,975
>> IF AMANDA IS STILL
AROUND,

4889
02:41:57,975 --> 02:42:08,485
YOU CAN FEEL FREE TO RESPOND.

4890
02:42:14,558 --> 02:42:17,661
I THINK THAT SHE MAY HAVE LOGGED

4891
02:42:17,661 --> 02:42:17,828
OFF.

4892
02:42:17,828 --> 02:42:18,862
JULIE HAS HER HAND UP IN THE

4893
02:42:18,862 --> 02:42:23,701
ROOM.

4894
02:42:23,701 --> 02:42:25,269
>> SCOTT, HAVE YOU HAD
YOUR HAND

4895
02:42:25,269 --> 02:42:26,103
UP FOR A LITTLE WHILE?

4896
02:42:26,103 --> 02:42:27,304
I'LL LET YOU GO FIRST IF YOU'D

4897
02:42:27,304 --> 02:42:27,738
LIKE.

4898
02:42:27,738 --> 02:42:27,972
OH.

4899
02:42:27,972 --> 02:42:30,040
ALL I WANT TO DO IS JUST AMPLIFY

4900
02:42:30,040 --> 02:42:31,008
ONE OF THE COMMENTS HERE THAT I

4901
02:42:31,008 --> 02:42:32,109
THINK WE'VE TALKED ABOUT A LOT

4902
02:42:32,109 --> 02:42:33,410
IN THIS COMMITTEE SO IT'S NOT

4903
02:42:33,410 --> 02:42:35,079
GOING TO BE ANY SURPRISE TO

4904
02:42:35,079 --> 02:42:37,648
ANYBODY HERE IN THIS ROOM, BUT I

4905
02:42:37,648 --> 02:42:40,851
JUST WANTED TO TALK ABOUT THE

4906
02:42:40,851 --> 02:42:43,454
BASIS AND SHORTAGE OF DIRECT

4907
02:42:43,454 --> 02:42:44,421
SUPPORT PROFESSIONALS FOR PEOPLE

4908
02:42:44,421 --> 02:42:45,322
WITH ALL DISABILITIES BUT ALSO

4909
02:42:45,322 --> 02:42:48,158
FOR PEOPLE WHO ARE AUTISTIC,

4910
02:42:48,158 --> 02:42:48,592
AUTISTIC PEOPLE.

4911
02:42:48,592 --> 02:42:50,227
AND THE TURNOVER THAT WE SEE IN

4912
02:42:50,227 --> 02:42:52,429
OUR FAMILIES AMONG DIRECT

4913
02:42:52,429 --> 02:42:53,764
SUPPORT PROFESSIONALS, PEOPLE

4914
02:42:53,764 --> 02:42:55,599
WHO ARE ABLE TO GET DIRECT

4915
02:42:55,599 --> 02:42:56,467
SUPPORT PROFESSIONALS INTO THEIR

4916
02:42:56,467 --> 02:42:58,035
HOMES, THE TURNOVER AND HOW THAT

4917
02:42:58,035 --> 02:42:59,336
CAN REALLY NEGATIVELY IMPACT THE

4918
02:42:59,336 --> 02:43:04,575
LIVES OF AUTISTIC PEOPLE, AND

4919
02:43:04,575 --> 02:43:05,943
THAT -- THE LOW PAY THAT A LOT

4920
02:43:05,943 --> 02:43:06,877
OF THESE PEOPLE ARE EXPERIENCING

4921
02:43:06,877 --> 02:43:08,946
AS A REAL REASON FOR THAT.

4922
02:43:08,946 --> 02:43:10,280
SO WE'VE TALKED ABOUT THIS

4923
02:43:10,280 --> 02:43:11,482
BEFORE, AND I'M SURE WE'LL TALK

4924
02:43:11,482 --> 02:43:12,683
ABOUT IT AGAIN, BUT IT CAME UP

4925
02:43:12,683 --> 02:43:13,784
IN A COUPLE OF THE COMMENTS SO I

4926
02:43:13,784 --> 02:43:14,985
JUST WANTED TO TAKE THE

4927
02:43:14,985 --> 02:43:16,086
OPPORTUNITY TO REALLY AMPLIFY

4928
02:43:16,086 --> 02:43:17,221
THAT AND SAY THAT THAT CONTINUES

4929
02:43:17,221 --> 02:43:20,190
TO BE A CRISIS AND THAT AUTISTIC

4930
02:43:20,190 --> 02:43:23,227
PEOPLE ARE GOING TO HAVE A HARD

4931
02:43:23,227 --> 02:43:24,528
TIME LIVING THEIR FULL LIVES IN

4932
02:43:24,528 --> 02:43:25,829
THE COMMUNITY AND REALLY

4933
02:43:25,829 --> 02:43:26,830
REACHING THEIR POTENTIAL IF WE

4934
02:43:26,830 --> 02:43:27,965
DON'T HAVE PEOPLE WHO ARE NOT

4935
02:43:27,965 --> 02:43:29,366
FAMILY MEMBERS TO BE ABLE TO

4936
02:43:29,366 --> 02:43:31,201
SUPPORT THEM IN DOING THAT.

4937
02:43:31,201 --> 02:43:32,536
SO I DON'T KNOW IF THIS IS

4938
02:43:32,536 --> 02:43:33,837
SOMETHING THAT OUR COMMITTEE CAN

4939
02:43:33,837 --> 02:43:36,573
CONTINUE TO REALLY BE THINKING

4940
02:43:36,573 --> 02:43:37,675
ABOUT IN THE NEXT ITERATION OF

4941
02:43:37,675 --> 02:43:38,876
THE IACC, BUT IT'S SUCH AN

4942
02:43:38,876 --> 02:43:44,548
IMPORTANT TOPIC AND IT REALLY  

4943
02:43:44,548 --> 02:43:46,016
LIMITS QUALITY OF LIFE FOR A LOT

4944
02:43:46,016 --> 02:43:47,851
OF PEOPLE TO NOT HAVE ACCESS TO

4945
02:43:47,851 --> 02:43:49,453
HIGH QUALITY OR CONSISTENT

4946
02:43:49,453 --> 02:43:51,155
DIRECT SUPPORT PROFESSIONALS.

4947
02:43:51,155 --> 02:43:52,856
>> CAN I JUST PIGGY BACK
ON

4948
02:43:52,856 --> 02:43:56,593
THAT, JULIE, S TO SAY WE'RE

4949
02:43:56,593 --> 02:43:57,795
LOOKING AT A TREMENDOUS NUMBER

4950
02:43:57,795 --> 02:43:59,229
OF PEOPLE WHO GET PULLED OUT OF

4951
02:43:59,229 --> 02:44:00,664
THE WORKFORCE, PRIMARILY MOTHERS

4952
02:44:00,664 --> 02:44:01,632
BUT A LOT OF CAREGIVERS, BECAUSE

4953
02:44:01,632 --> 02:44:06,537
WE DON'T HAVE ACCESS TO GOOD

4954
02:44:06,537 --> 02:44:07,738
CONSISTENT DAY SERVICES AND

4955
02:44:07,738 --> 02:44:13,544
DIRECT SUPPORT PERSONNEL.

4956
02:44:13,544 --> 02:44:14,078
>> THANK YOU.

4957
02:44:14,078 --> 02:44:16,380
SCOTT?

4958
02:44:16,380 --> 02:44:18,782
>> YEAH, I JUST WANTED TO
SAY, I

4959
02:44:18,782 --> 02:44:21,151
CONCUR WITH THOSE THOUGHTS AS

4960
02:44:21,151 --> 02:44:23,053
FAR AS COMMUNITY-BASED SUPPORTS,

4961
02:44:23,053 --> 02:44:24,254
ENHANCING IN THAT AREA.

4962
02:44:24,254 --> 02:44:27,858
WHICH IS ALSO INTERRELATED TO AS

4963
02:44:27,858 --> 02:44:29,393
A SOCIAL DETERMINANT OF HEALTH

4964
02:44:29,393 --> 02:44:31,161
TO GREATER HEALTH AND WELL-BEING

4965
02:44:31,161 --> 02:44:32,796
AND TO INDEPENDENT LIVING AND

4966
02:44:32,796 --> 02:44:34,365
EMPLOYMENT TOO FOR OUR END OF

4967
02:44:34,365 --> 02:44:36,633
THINGS IS THAT FOLKS WHO HAVE

4968
02:44:36,633 --> 02:44:38,602
BETTER COMMUNITY-BASED SUPPORTS

4969
02:44:38,602 --> 02:44:41,538
HAVE GREATER QUALITY OF LIFE AND

4970
02:44:41,538 --> 02:44:45,275
ABLE TO HAVE EMPLOYMENT ACCESS

4971
02:44:45,275 --> 02:44:47,010
THAT FITS THEIR INTERESTS, NEEDS

4972
02:44:47,010 --> 02:44:48,979
AND TALENTS AND SKILLS AND HAVE

4973
02:44:48,979 --> 02:44:50,414
CAREER DEVELOPMENT THAT WORKS

4974
02:44:50,414 --> 02:44:50,714
WELL.

4975
02:44:50,714 --> 02:44:52,583
I ALSO WANT TO CONCUR WITH SAM'S

4976
02:44:52,583 --> 02:44:53,350
COMMENT AS FAR AS ON THE

4977
02:44:53,350 --> 02:44:54,885
COMMUNICATION END OF THINGS,

4978
02:44:54,885 --> 02:44:55,552
THAT'S SOMETHING I'VE BEEN

4979
02:44:55,552 --> 02:44:56,954
TRYING TO EMPHASIZE, IS ACCESS

4980
02:44:56,954 --> 02:44:59,490
TO ALTERNATIVE AUGMENTIVE

4981
02:44:59,490 --> 02:45:00,758
COMMUNICATION SYSTEMS DEVICES

4982
02:45:00,758 --> 02:45:06,029
ACROSS MANY DIFFERENT LIFE AREAS

4983
02:45:06,029 --> 02:45:07,431
FOR EMPLOYMENT AND OTHER AREAS

4984
02:45:07,431 --> 02:45:09,299
THAT ALLOW FOLKS TO HAVE FULL

4985
02:45:09,299 --> 02:45:10,734
ACCESS AND OPPORTUNITY AND I

4986
02:45:10,734 --> 02:45:11,935
THINK THAT'S NOT ALWAYS

4987
02:45:11,935 --> 02:45:12,903
EMPHASIZED AS MUCH, AND

4988
02:45:12,903 --> 02:45:14,338
SOMETIMES IT'S BECAUSE FOLKS WHO

4989
02:45:14,338 --> 02:45:16,540
MAY HAVE DIFFERENCES IN

4990
02:45:16,540 --> 02:45:17,408
COMMUNICATION OR MAY BE

4991
02:45:17,408 --> 02:45:18,509
NON-SPEAKING OR JUST HAVE A

4992
02:45:18,509 --> 02:45:19,576
VARIETY OF DIFFERENT

4993
02:45:19,576 --> 02:45:20,244
COMMUNICATION MEANS MAY NOT

4994
02:45:20,244 --> 02:45:22,279
ALWAYS BE FULLY REPRESENTED IN

4995
02:45:22,279 --> 02:45:24,381
THE ROOM IN SCIENTIFIC STUDIES,

4996
02:45:24,381 --> 02:45:25,983
IN PAPERS, REPORTS, ET CETERA,

4997
02:45:25,983 --> 02:45:27,718
AND SO I THINK IT'S UP TO ALL OF

4998
02:45:27,718 --> 02:45:30,687
US TO EMPHASIZE THAT AS SORT OF

4999
02:45:30,687 --> 02:45:32,756
THE DIVERSITY AND COMPLEXITY IN

5000
02:45:32,756 --> 02:45:37,494
TERMS OF AN AWESOME LIVED

5001
02:45:37,494 --> 02:45:37,928
EXPERIENCE.

5002
02:45:37,928 --> 02:45:42,399
JUST BRIEFLY I WANTED TO ALSO

5003
02:45:42,399 --> 02:45:43,167
APPRECIATE THE COMMENTS THAT

5004
02:45:43,167 --> 02:45:44,268
WERE IN THE PUBLIC WRITTEN

5005
02:45:44,268 --> 02:45:46,904
COMMENTS ABOUT EMPLOYMENT ACCESS

5006
02:45:46,904 --> 02:45:49,406
INCLUDING KERRY BERGER, AND THEN

5007
02:45:49,406 --> 02:45:51,809
THERE WAS A COMMENT FROM ASN

5008
02:45:51,809 --> 02:45:52,376
INCLUDING MENTIONING I DON'T

5009
02:45:52,376 --> 02:45:54,478
KNOW IF THIS IS THE SAME BUT OUR

5010
02:45:54,478 --> 02:45:59,950
OWN PROJECT, RESEARCH SUPPORT

5011
02:45:59,950 --> 02:46:01,051
SERVICES FOR EMPLOYMENT, WE'RE

5012
02:46:01,051 --> 02:46:03,454
STRIVING DO MORE AS WE CAN SO WE

5013
02:46:03,454 --> 02:46:04,655
APPRECIATE ALL THE INPUT WE CAN

5014
02:46:04,655 --> 02:46:06,757
GET FROM CONSTITUENTS, IT'S

5015
02:46:06,757 --> 02:46:08,158
ALWAYS VALUABLE FOR US AND

5016
02:46:08,158 --> 02:46:10,127
EXPLORING HOW WE CAN IMPROVE

5017
02:46:10,127 --> 02:46:11,829
BETTER ACCESS TO EMPLOYMENT,

5018
02:46:11,829 --> 02:46:12,396
HIGH QUALITY OF LIFE.

5019
02:46:12,396 --> 02:46:15,999
THANKS.

5020
02:46:15,999 --> 02:46:16,433
>>

5021
02:46:16,433 --> 02:46:18,268
>> ARE YOU SEEING ANYTHING
ON

5022
02:46:18,268 --> 02:46:18,802
ZOOM, SHELLI?

5023
02:46:18,802 --> 02:46:19,703
>> I AM NOT.

5024
02:46:19,703 --> 02:46:21,338
>> OKAY.

5025
02:46:21,338 --> 02:46:27,144
HERE IN THE ROOM, JALYNN?

5026
02:46:27,144 --> 02:46:29,213
>> FOR THOSE OUT THERE,
THIS IS

5027
02:46:29,213 --> 02:46:30,047
JALYNN PRINCE.

5028
02:46:30,047 --> 02:46:31,815
I'VE HAD A VERY COMPLICATED

5029
02:46:31,815 --> 02:46:32,349
SITUATION WITH CAREGIVING

5030
02:46:32,349 --> 02:46:36,186
THROUGH OUR FAMILY, AND TO DO A

5031
02:46:36,186 --> 02:46:38,255
CONSOLIDATED VERSION OF THIS.

5032
02:46:38,255 --> 02:46:42,092
MY MOM TURNED 80 ONE WEEK AFTER

5033
02:46:42,092 --> 02:46:44,061
OUR YOUNGEST CHILD WAS BORN.

5034
02:46:44,061 --> 02:46:47,731
SO WE HAD AN 80-YEAR SPAN PLUS

5035
02:46:47,731 --> 02:46:49,600
TWO TEENAGERS, A HUSBAND, AND

5036
02:46:49,600 --> 02:46:51,902
MYSELF, ALL IN ONE HOUSEHOLD.

5037
02:46:51,902 --> 02:46:54,838
AND MY MOM, WHO HAD TURNED 80

5038
02:46:54,838 --> 02:46:56,240
JUST AT THE TIME THAT MADISON

5039
02:46:56,240 --> 02:46:58,242
WAS BORN LIVED WITH US UNTIL SHE

5040
02:46:58,242 --> 02:46:59,776
WAS 94.

5041
02:46:59,776 --> 02:47:01,845
SO THERE WERE SO MANY DIFFERENT

5042
02:47:01,845 --> 02:47:03,580
TYPES OF DEMANDS AND SO MANY

5043
02:47:03,580 --> 02:47:05,782
THINGS THAT I'VE SEEN BOTH WITH

5044
02:47:05,782 --> 02:47:09,052
SIBLINGS AND OUR CHILDREN'S

5045
02:47:09,052 --> 02:47:11,355
ASSOCIATES AND FRIENDS THAT ALSO

5046
02:47:11,355 --> 02:47:14,224
HAVE SIBLINGS ON THE SPECTRUM,

5047
02:47:14,224 --> 02:47:16,226
THAT I THINK SOMETIMES IT'S

5048
02:47:16,226 --> 02:47:17,728
EXPECTED THAT THE SIBLING WOULD

5049
02:47:17,728 --> 02:47:18,595
STEP FORWARD AND BE THE

5050
02:47:18,595 --> 02:47:20,030
CAREGIVER.

5051
02:47:20,030 --> 02:47:23,000
AND IN MANY SITUATIONS, THAT IS

5052
02:47:23,000 --> 02:47:24,735
ADMIRABLE, IT IS THE RIGHT

5053
02:47:24,735 --> 02:47:28,205
THING, BUT SOMETIMES WE NEED TO

5054
02:47:28,205 --> 02:47:30,207
UNDERSTAND WHAT THE OTHER FAMILY

5055
02:47:30,207 --> 02:47:31,341
MEMBERS HAVE GIVEN UP, NOT

5056
02:47:31,341 --> 02:47:33,176
BECAUSE OF THEIR CHOICE.

5057
02:47:33,176 --> 02:47:35,679
MY HUSBAND AND I DECIDED TO HAVE

5058
02:47:35,679 --> 02:47:36,346
ANOTHER CHILD.

5059
02:47:36,346 --> 02:47:39,516
OUR CHILDREN DIDN'T DECIDE THAT.

5060
02:47:39,516 --> 02:47:41,151
BUT THEIR LIVES WERE IMPACTED.

5061
02:47:41,151 --> 02:47:43,687
IT MAY SOUND SUPERFICIAL IN A

5062
02:47:43,687 --> 02:47:45,555
WAY, BUT BIRTHDAY PARTIES WERE

5063
02:47:45,555 --> 02:47:46,957
IMPACTED, HOLIDAYS WERE

5064
02:47:46,957 --> 02:47:48,058
IMPACTED.

5065
02:47:48,058 --> 02:47:49,359
VACATIONS WERE LIMITED.

5066
02:47:49,359 --> 02:47:51,762
THINGS WERE CHANGED BECAUSE OF

5067
02:47:51,762 --> 02:47:53,096
THE PERSON WITH THE HIGHEST

5068
02:47:53,096 --> 02:47:56,166
NEEDS.

5069
02:47:56,166 --> 02:47:58,135
AND WE DID SO LOVINGLY AND

5070
02:47:58,135 --> 02:47:59,770
CARINGLY, BUT THERE HAS BEEN A

5071
02:47:59,770 --> 02:48:03,040
SACRIFICE THAT IS OFTEN MADE BY

5072
02:48:03,040 --> 02:48:04,474
SIBLINGS, AND WHEN THEY MOVE

5073
02:48:04,474 --> 02:48:06,543
FORWARD AND THEY HAVE THEIR OWN

5074
02:48:06,543 --> 02:48:07,878
CHILDREN, IF THEY'RE TAKING CARE

5075
02:48:07,878 --> 02:48:10,180
OF THEIR UNCLE, HOW CAN THEY

5076
02:48:10,180 --> 02:48:13,583
NECESSARILY TAKE CARE OF THEIR

5077
02:48:13,583 --> 02:48:16,286
CHILDREN BECAUSE THOSE ARE THEIR

5078
02:48:16,286 --> 02:48:16,987
CHILDREN AND THEY DESERVE A

5079
02:48:16,987 --> 02:48:19,289
FUTURE TOO.

5080
02:48:19,289 --> 02:48:21,024
SO THE IDEA OF WHAT YOU WERE

5081
02:48:21,024 --> 02:48:23,360
MENTIONING ABOUT HAVING

5082
02:48:23,360 --> 02:48:26,096
ADDITIONAL TRAINED AND CAPABLE

5083
02:48:26,096 --> 02:48:28,065
CAREGIVERS IN LINE BECAUSE IF

5084
02:48:28,065 --> 02:48:29,800
THERE'S A SINGLE SIBLING AND

5085
02:48:29,800 --> 02:48:32,669
SOMETHING HAPPENS TO THEM, WHAT

5086
02:48:32,669 --> 02:48:33,236
HAPPENS?

5087
02:48:33,236 --> 02:48:35,439
SO IT A COMPLEX STORY, AND IT

5088
02:48:35,439 --> 02:48:36,940
GOES ON IN MANY DIFFERENT WAYS

5089
02:48:36,940 --> 02:48:39,142
THAT WE DON'T SEE WHEN WE SEE

5090
02:48:39,142 --> 02:48:41,178
THE FRONT DOOR OF OUR NEIGHBORS

5091
02:48:41,178 --> 02:48:42,646
WHO ARE LIVING WITH AUTISM, WHAT

5092
02:48:42,646 --> 02:48:44,848
THE COMPLICATIONS ARE, WHAT THE

5093
02:48:44,848 --> 02:48:46,283
IMPLICATIONS ARE, AND IT CAN GO

5094
02:48:46,283 --> 02:48:48,151
ON FOR GENERATIONS.

5095
02:48:48,151 --> 02:48:50,320
AND WE DO WANT TO HOPE THE BEST

5096
02:48:50,320 --> 02:48:52,322
AND PROVIDE THE BEST FOR OUR

5097
02:48:52,322 --> 02:48:54,157
LOVED ONES WHO ARE AUTISTIC.

5098
02:48:54,157 --> 02:48:55,592
THAT'S NOT THE QUESTION.

5099
02:48:55,592 --> 02:48:57,661
BUT THERE'S A LOT OF OTHER LIVES

5100
02:48:57,661 --> 02:48:58,862
ASSOCIATED WITH IT.

5101
02:48:58,862 --> 02:49:04,267
THANK YOU.

5102
02:49:04,267 --> 02:49:05,969
>> AND WE ALSO HAD YETTA
IN THE

5103
02:49:05,969 --> 02:49:07,971
ROOM WITH A COMMENT.

5104
02:49:07,971 --> 02:49:10,374
>> SO AS ALWAYS, I'D LIKE
TO

5105
02:49:10,374 --> 02:49:12,009
THANK THOSE WHO PROVIDED ORAL

5106
02:49:12,009 --> 02:49:14,511
COMMENTS AND WRITTEN COMMENTS,

5107
02:49:14,511 --> 02:49:15,412
TO IACC.

5108
02:49:15,412 --> 02:49:16,713
I THINK IT'S SO VERY IMPORTANT

5109
02:49:16,713 --> 02:49:19,349
FOR YOU ALL TO SHARE YOUR

5110
02:49:19,349 --> 02:49:20,350
INDIVIDUAL STORIES AND

5111
02:49:20,350 --> 02:49:20,684
EXPERIENCES.

5112
02:49:20,684 --> 02:49:22,319
IT REALLY HELPS TO INFORM THE

5113
02:49:22,319 --> 02:49:25,956
WORK THAT WE ARE DOING.

5114
02:49:25,956 --> 02:49:27,691
A LOT OF COMMENTS IN HERE, YOU

5115
02:49:27,691 --> 02:49:31,194
SAW THE NUMBERS OF FOLKS WHO

5116
02:49:31,194 --> 02:49:32,729
HAVE SHARED THEIR EXPERIENCE

5117
02:49:32,729 --> 02:49:35,565
ABOUT FAMILY CAREGIVING, MANY OF

5118
02:49:35,565 --> 02:49:37,000
WHICH WHEN YOU READ THE STORIES

5119
02:49:37,000 --> 02:49:38,935
AND I IMPLORE FOLKS WHO MIGHT

5120
02:49:38,935 --> 02:49:42,139
NOT BE IACC MEMBERS TO TAKE TIME

5121
02:49:42,139 --> 02:49:43,507
TO READ THROUGH THESE COMMENTS

5122
02:49:43,507 --> 02:49:45,208
AND FIND THE THREADS AND FIGURE

5123
02:49:45,208 --> 02:49:46,977
OUT HOW IN YOUR OWN COMMUNITIES

5124
02:49:46,977 --> 02:49:50,814
YOU CAN BE ADVOCATING.

5125
02:49:50,814 --> 02:49:52,449
YES, WORK NEEDS TO BE DONE.

5126
02:49:52,449 --> 02:49:54,618
WE HAVE THESE CONVERSATIONS

5127
02:49:54,618 --> 02:49:56,820
EVERY TIME WE MEET, THINGS ARE

5128
02:49:56,820 --> 02:49:58,488
MOVING BUT IT TAKES TIME, RIGHT?

5129
02:49:58,488 --> 02:50:01,925
AND SO THE WAY THINGS MOVE IS BY

5130
02:50:01,925 --> 02:50:03,627
US TELLING OUR STORIES AND BY US

5131
02:50:03,627 --> 02:50:07,664
ADVOCATING AND I JUST THINK IT'S

5132
02:50:07,664 --> 02:50:09,533
SO VERY IMPORTANT FOR PEOPLE TO

5133
02:50:09,533 --> 02:50:12,502
BE ACKNOWLEDGED FOR, YOU KNOW,

5134
02:50:12,502 --> 02:50:14,704
WHAT THEY'RE DOING AS AUTISTIC

5135
02:50:14,704 --> 02:50:17,007
INDIVIDUALS TO ADVOCATE AND TO

5136
02:50:17,007 --> 02:50:19,810
WORK EVERY DAY TO BE FUNCTIONAL

5137
02:50:19,810 --> 02:50:21,478
PARTS OF SOCIETY, TO BE ACCEPTED

5138
02:50:21,478 --> 02:50:22,913
INTO SOCIETY BECAUSE THE REALITY

5139
02:50:22,913 --> 02:50:25,882
IS THE WORLD IS NOT BUILT FOR

5140
02:50:25,882 --> 02:50:27,651
THEM, AND I SAY THAT AS SOMEONE

5141
02:50:27,651 --> 02:50:29,619
WHO IS THE MOTHER AND YOU'LL

5142
02:50:29,619 --> 02:50:31,488
HEAR ME SPEAK LATER OF A

5143
02:50:31,488 --> 02:50:32,689
20-YEAR-OLD WHO IS DIAGNOSED

5144
02:50:32,689 --> 02:50:35,625
WITH AUTISM, ADHD AND

5145
02:50:35,625 --> 02:50:36,760
INTELLECTUAL DISABILITY, RIGHT?

5146
02:50:36,760 --> 02:50:38,095
I DON'T HAVE HIS EXPERIENCE BUT

5147
02:50:38,095 --> 02:50:40,263
I'M HELPING HIM TO NAVIGATE, AND

5148
02:50:40,263 --> 02:50:41,331
IT'S CHALLENGING WHEN PEOPLE

5149
02:50:41,331 --> 02:50:43,767
JUST DON'T UNDERSTAND, YES, WE

5150
02:50:43,767 --> 02:50:45,836
HAVE COME A LONG WAY, BUT THERE

5151
02:50:45,836 --> 02:50:47,471
IS SO MUCH MORE WORK TO BE DONE

5152
02:50:47,471 --> 02:50:48,705
AND I'VE SAID THAT BEFORE, I'M

5153
02:50:48,705 --> 02:50:51,975
GOING TO CONTINUE TO SAY THAT,

5154
02:50:51,975 --> 02:50:55,712
RIGHT, BUT EACH OF US, RIGHT,

5155
02:50:55,712 --> 02:50:57,047
EACH INDIVIDUAL, ALL OF US

5156
02:50:57,047 --> 02:50:58,882
COMING TOGETHER AND SHARING OUR

5157
02:50:58,882 --> 02:50:59,983
STORIES AND DOING THIS WORK IS

5158
02:50:59,983 --> 02:51:01,084
GOING TO MAKE A DIFFERENCE.

5159
02:51:01,084 --> 02:51:03,720
SO I JUST WANTED TO UPLIFT AND

5160
02:51:03,720 --> 02:51:05,789
THANK EVERYONE FOR SHARING THEIR

5161
02:51:05,789 --> 02:51:06,690
STORIES, BECAUSE IT IS MAKING A

5162
02:51:06,690 --> 02:51:07,357
DIFFERENCE.

5163
02:51:07,357 --> 02:51:09,593
I KNOW WHEN YOU'RE IN HERE DAY

5164
02:51:09,593 --> 02:51:11,061
TO DAY, IT MAYBE SEEMS

5165
02:51:11,061 --> 02:51:12,362
IMPOSSIBLE, BUT I WANT TO

5166
02:51:12,362 --> 02:51:21,738
ACKNOWLEDGE YOU AND THANK YOU.

5167
02:51:21,738 --> 02:51:22,906
>> ANY OTHER COMMENTS IN
THE

5168
02:51:22,906 --> 02:51:23,473
ROOM?

5169
02:51:23,473 --> 02:51:24,641
IT DOESN'T SEEM LIKE ANYTHING ON

5170
02:51:24,641 --> 02:51:26,610
ZOOM.

5171
02:51:26,610 --> 02:51:28,378
SO WE'LL DO TOM AND THEN

5172
02:51:28,378 --> 02:51:28,745
IVANOVA.

5173
02:51:28,745 --> 02:51:31,248
>> I CAN GO VERY QUICK.

5174
02:51:31,248 --> 02:51:33,183
TO THE SUPPORT PROFESSIONAL

5175
02:51:33,183 --> 02:51:36,520
CRISIS ISSUE, I THINK -- OH,

5176
02:51:36,520 --> 02:51:36,720
SORRY.

5177
02:51:36,720 --> 02:51:38,155
THE THE SUPPORT PROFESSIONAL

5178
02:51:38,155 --> 02:51:42,626
CRISIS ISSUE, I THINK A ROLE

5179
02:51:42,626 --> 02:51:43,827
IACC CAN PLAY IS TO GUIDE US --

5180
02:51:43,827 --> 02:51:45,162
I DON'T THINK WE HAVE SUFFICIENT

5181
02:51:45,162 --> 02:51:47,764
RESEARCH TO UNDERSTAND WHAT ARE

5182
02:51:47,764 --> 02:51:48,932
THE CHARACTERISTICS OF

5183
02:51:48,932 --> 02:51:50,801
INDIVIDUALS THAT DO MAINTAIN

5184
02:51:50,801 --> 02:51:53,803
EMPLOYMENT IN THOSE SETTINGS?

5185
02:51:53,803 --> 02:51:55,105
WHAT KEEPS THEM EMPLOYED?

5186
02:51:55,105 --> 02:51:57,007
HOW DO WE BEST ORIENT THEM?

5187
02:51:57,007 --> 02:51:58,975
HOW DO WE MAKE SURE THAT THOSE

5188
02:51:58,975 --> 02:52:00,510
INDIVIDUALS FEEL COMFORTABLE

5189
02:52:00,510 --> 02:52:02,145
WORKING WITH THE FAMILY AND THE

5190
02:52:02,145 --> 02:52:04,181
OTHER CAREGIVERS IN THAT ROLE,

5191
02:52:04,181 --> 02:52:06,416
BECAUSE THAT'S A REALLY

5192
02:52:06,416 --> 02:52:07,717
COLLABORATIVE PROCESS THAT I'VE

5193
02:52:07,717 --> 02:52:08,585
EXPERIENCED OBVIOUSLY

5194
02:52:08,585 --> 02:52:10,687
PERSONALLY, BUT ALSO

5195
02:52:10,687 --> 02:52:11,555
PROFESSIONALLY, AND I THINK

5196
02:52:11,555 --> 02:52:14,291
THERE'S A LOT FOR US TO

5197
02:52:14,291 --> 02:52:17,794
UNDERSTAND THERE FROM A RESEARCH

5198
02:52:17,794 --> 02:52:19,129
PERSPECTIVE BUT THEN ALSO

5199
02:52:19,129 --> 02:52:19,996
THERE'S A TON OF SERVICES AND

5200
02:52:19,996 --> 02:52:20,997
SUPPORT STUFF THAT NEEDS TO

5201
02:52:20,997 --> 02:52:22,532
HAPPEN IN ORDER TO IMPROVE THAT

5202
02:52:22,532 --> 02:52:23,767
CRISIS BECAUSE IT IS REALLY A

5203
02:52:23,767 --> 02:52:27,604
CRISIS.

5204
02:52:27,604 --> 02:52:28,672
>> THANK YOU.

5205
02:52:28,672 --> 02:52:34,144
THEN IVANOVA.

5206
02:52:34,144 --> 02:52:36,980
>> I WANT TO GIVE
UNDERSTANDING

5207
02:52:36,980 --> 02:52:40,517
AND SOLIDARITY TO PEOPLE WHO ARE

5208
02:52:40,517 --> 02:52:44,020
IN CRISIS AND FAMILIES WHO ARE

5209
02:52:44,020 --> 02:52:44,454
STRUGGLING.

5210
02:52:44,454 --> 02:52:48,892
I THINK THAT WE REALLY NEED TO

5211
02:52:48,892 --> 02:52:50,694
ADVOCATE FOR BETTER SERVICES IN

5212
02:52:50,694 --> 02:52:53,230
THE COMMUNITY FOR PEOPLE TO GET

5213
02:52:53,230 --> 02:52:55,298
SUPPORTS OUTSIDE OF THEIR FAMILY

5214
02:52:55,298 --> 02:52:58,068
AS WELL, SO THAT PEOPLE START

5215
02:52:58,068 --> 02:52:59,936
CONNECTING WITH PEOPLE IN THE

5216
02:52:59,936 --> 02:53:04,074
COMMUNITY OUTSIDE OF FAMILY AND

5217
02:53:04,074 --> 02:53:05,175
GAIN THOSE NATURAL FRIENDSHIPS

5218
02:53:05,175 --> 02:53:07,143
AND SUPPORTS IN THE COMMUNITY.

5219
02:53:07,143 --> 02:53:08,812
IT COULD BE AN EMPLOYER, IT

5220
02:53:08,812 --> 02:53:10,580
COULD BE A BUSINESS OWNER, IT

5221
02:53:10,580 --> 02:53:15,185
COULD BE A COACH, IT COULD BE

5222
02:53:15,185 --> 02:53:16,720
THE TEACHER OF THE ART CLASS

5223
02:53:16,720 --> 02:53:17,354
NEXT DOOR.

5224
02:53:17,354 --> 02:53:19,990
BUT YOU KNOW, TRYING TO SUPPORT

5225
02:53:19,990 --> 02:53:22,626
CAREGIVERS AND HELPING THEIR

5226
02:53:22,626 --> 02:53:24,394
YOUNG ADULTS WITH DISABILITIES

5227
02:53:24,394 --> 02:53:27,564
GAIN THOSE OUTSIDE CONNECTIONS,

5228
02:53:27,564 --> 02:53:29,532
I THINK THAT WE NEED TO ADVOCATE

5229
02:53:29,532 --> 02:53:32,369
FOR MORE FUNDING FOR THAT, AND

5230
02:53:32,369 --> 02:53:35,972
WE NEED BETTER SUPPORTS FOR THAT

5231
02:53:35,972 --> 02:53:37,641
ADULT TRANSITION, BECAUSE A LOT

5232
02:53:37,641 --> 02:53:40,944
OF FAMILIES ARE BEING TOLD THAT,

5233
02:53:40,944 --> 02:53:42,679
OH, THEY'LL NEVER BECOME ADULTS

5234
02:53:42,679 --> 02:53:43,780
AND THAT'S NOT TRUE.

5235
02:53:43,780 --> 02:53:46,583
WE BECOME ADULTS, AND OUR

5236
02:53:46,583 --> 02:53:48,084
CAREGIVERS AND OUR FAMILIES NEED

5237
02:53:48,084 --> 02:53:50,820
TO BE SUPPORTED IN HELPING US

5238
02:53:50,820 --> 02:53:52,989
WITH THAT TRANSITION.

5239
02:53:52,989 --> 02:53:54,457
I WOULD NOT HAVE BEEN ABLE TO

5240
02:53:54,457 --> 02:53:56,960
TRANSITION WITHOUT MY PARENTS'

5241
02:53:56,960 --> 02:53:59,029
SUPPORT, AND BELIEVING IN ME AND

5242
02:53:59,029 --> 02:54:01,131
ALLOWING ME TO DO ADULT THINGS.

5243
02:54:01,131 --> 02:54:04,200
AND SO WE REALLY NEED TO COME

5244
02:54:04,200 --> 02:54:05,735
AROUND THESE CAREGIVERS AND HELP

5245
02:54:05,735 --> 02:54:09,039
THEM GET THAT SUPPORT FOR THAT

5246
02:54:09,039 --> 02:54:09,906
TRANSITION, AND SO THEY DON'T

5247
02:54:09,906 --> 02:54:12,542
HAVE TO WORRY WHEN THEY'RE

5248
02:54:12,542 --> 02:54:13,610
OLDER, THAT THERE IS A PLACE FOR

5249
02:54:13,610 --> 02:54:15,779
THEIR SONS AND DAUGHTERS THAT

5250
02:54:15,779 --> 02:54:18,815
THEY ARE SUPPORTED AND LOVED AND

5251
02:54:18,815 --> 02:54:21,084
SEEN AS A FULL HUMAN BEING AND

5252
02:54:21,084 --> 02:54:24,421
NOT JUST PUT IN AN INSTITUTION.

5253
02:54:24,421 --> 02:54:27,257
AND SO I REALLY JUST WANT TO

5254
02:54:27,257 --> 02:54:28,558
STAND BY THOSE CAREGIVERS AND

5255
02:54:28,558 --> 02:54:31,194
HELP THEM WITH THAT AND GET THE

5256
02:54:31,194 --> 02:54:32,662
FUNDING AND RESEARCH THEY NEED

5257
02:54:32,662 --> 02:54:35,298
TO BE ABLE TO GET THAT SUPPORT

5258
02:54:35,298 --> 02:54:40,236
IN THE COMMUNITY SO THAT WE

5259
02:54:40,236 --> 02:54:44,274
DEVELOP THOSE FREN SHIPS IN THEE

5260
02:54:44,274 --> 02:54:44,541
COMMUNITY.

5261
02:54:44,541 --> 02:54:44,841
THANK YOU.

5262
02:54:44,841 --> 02:54:49,412
>> THANK YOU.

5263
02:54:49,412 --> 02:54:51,314
JENNY MAI PHAN.

5264
02:54:51,314 --> 02:54:53,149
>> SO THE ADDITIONAL POINT
THAT

5265
02:54:53,149 --> 02:54:55,352
I WANT TO ADD IS I'VE HEARD

5266
02:54:55,352 --> 02:54:57,454
SOMEONE HERE SAY SIBLINGS BEING

5267
02:54:57,454 --> 02:55:00,724
TRAINED IN GUARDIANSHIP.

5268
02:55:00,724 --> 02:55:01,958
THERE ARE PARENTS WHO AREN'T

5269
02:55:01,958 --> 02:55:04,027
EVEN TRAINED IN THAT PROCESS.

5270
02:55:04,027 --> 02:55:05,328
AND I'M SPEAKING SPECIFICALLY

5271
02:55:05,328 --> 02:55:06,997
ABOUT FAMILIES OF COLOR THAT

5272
02:55:06,997 --> 02:55:09,833
I'VE SPOKEN WITH WHO KNEW

5273
02:55:09,833 --> 02:55:11,267
NOTHING ABOUT GUARDIANSHIP AS

5274
02:55:11,267 --> 02:55:13,002
THEIR CHILDREN TRANSITION INTO

5275
02:55:13,002 --> 02:55:14,671
ADULTHOOD.

5276
02:55:14,671 --> 02:55:18,174
SO I THINK THAT IS A VERY

5277
02:55:18,174 --> 02:55:21,444
CRITICAL MAYBE UNDERREPRESENTED

5278
02:55:21,444 --> 02:55:22,879
OR OVERSIGHT IN THESE

5279
02:55:22,879 --> 02:55:23,780
CONVERSATIONS, AND I THINK IT'S

5280
02:55:23,780 --> 02:55:26,950
VERY IMPORTANT TO ALSO INCLUDE

5281
02:55:26,950 --> 02:55:29,452
PARENTS OF COLOR WHO DON'T

5282
02:55:29,452 --> 02:55:31,688
UNDERSTAND THE GUARDIANSHIP

5283
02:55:31,688 --> 02:55:32,021
PROCESS.

5284
02:55:32,021 --> 02:55:32,756
>> THANK YOU.

5285
02:55:32,756 --> 02:55:35,325
SAM?

5286
02:55:35,325 --> 02:55:38,361
>> I WOULD ALSO ADD THEY
NEED TO

5287
02:55:38,361 --> 02:55:40,330
BE TRAINED IN ALTERNATIVES TO

5288
02:55:40,330 --> 02:55:43,933
GUARDIANSHIP.

5289
02:55:43,933 --> 02:55:47,871
[LAUGHTER]

5290
02:55:47,871 --> 02:55:49,639
AND ALSO I THINK WE NEED TO TALK

5291
02:55:49,639 --> 02:55:50,306
ABOUT THE ROLE OF

5292
02:55:50,306 --> 02:55:52,208
PERSON-CENTERED SUPPORTS, PERSON

5293
02:55:52,208 --> 02:55:52,842
DIRECTED SUPPORTS AND SERVICES

5294
02:55:52,842 --> 02:55:54,244
HERE.

5295
02:55:54,244 --> 02:55:55,412
WHICH ARE PROGRAMS WHERE PEOPLE

5296
02:55:55,412 --> 02:55:57,013
CAN CHOOSE THEIR OWN CAREGIVERS,

5297
02:55:57,013 --> 02:56:01,484
TRAIN THEIR OWN CAREGIVERS.

5298
02:56:01,484 --> 02:56:04,254
IT IS AN ABSOLUTELY CRITICAL

5299
02:56:04,254 --> 02:56:04,721
COMPONENT, ONE OF MANY

5300
02:56:04,721 --> 02:56:05,789
COMPONENTS IN TRYING TO ADDRESS

5301
02:56:05,789 --> 02:56:08,091
THE CAREGIVER SHORTAGE, BECAUSE

5302
02:56:08,091 --> 02:56:10,527
IT MEANS THAT WE CAN START

5303
02:56:10,527 --> 02:56:12,462
PAYING, FOR EXAMPLE, FAMILY

5304
02:56:12,462 --> 02:56:14,864
MEMBERS TO PROVIDE SERVICES,

5305
02:56:14,864 --> 02:56:16,633
FRIENDS TO PROVIDE SERVICES.

5306
02:56:16,633 --> 02:56:19,602
YOU CAN RECRUIT PEOPLE WHO

5307
02:56:19,602 --> 02:56:21,571
AREN'T ALREADY DIRECT SUPPORT

5308
02:56:21,571 --> 02:56:22,539
PROFESSIONALS, TRAIN THEM IN THE

5309
02:56:22,539 --> 02:56:23,640
SPECIFIC THINGS THAT THEY NEED

5310
02:56:23,640 --> 02:56:26,075
TO DO THROUGH THAT PERSON, AND

5311
02:56:26,075 --> 02:56:28,378
THEN GET THEM IN AND HELPING

5312
02:56:28,378 --> 02:56:29,045
PROVIDE CARE.

5313
02:56:29,045 --> 02:56:31,014
A LOT OF PERSON-DIRECTED

5314
02:56:31,014 --> 02:56:32,315
SUPPORTS AND SERVICES PROGRAMS

5315
02:56:32,315 --> 02:56:33,316
AREN'T AVAILABLE TO THE PEOPLE

5316
02:56:33,316 --> 02:56:35,084
WITH THE HIGHEST NEEDS.

5317
02:56:35,084 --> 02:56:40,323
SO IN D.C. , FOR EXAMPLE, YETTA

5318
02:56:40,323 --> 02:56:41,658
KNOWS, IT'S ONLY IN THE WAIVER

5319
02:56:41,658 --> 02:56:44,828
PROGRAM THAT HAS A PRETTY

5320
02:56:44,828 --> 02:56:49,532
LIMITED CAP ON ANNUAL SPENDING.

5321
02:56:49,532 --> 02:56:52,635
SO IF YOU NEED 24/7 OR EVEN

5322
02:56:52,635 --> 02:56:55,905
CLOSE TO 2 24/7 CARE, EVEN FULL

5323
02:56:55,905 --> 02:56:59,876
TIME, JUST 40 HOURS A WEEK, YOU

5324
02:56:59,876 --> 02:57:01,644
CAN'T DO PARTICIPANT-DIRECTED

5325
02:57:01,644 --> 02:57:03,012
SUPPORTS AND SERVICES AND WE

5326
02:57:03,012 --> 02:57:04,948
NEED TO BE ADVOCATING FOR

5327
02:57:04,948 --> 02:57:08,351
EXPANSION OF THOSE PROGRAMS.

5328
02:57:08,351 --> 02:57:09,219
>> THANK YOU.

5329
02:57:09,219 --> 02:57:09,419
YETTA?

5330
02:57:09,419 --> 02:57:12,155
>> JUST WANT TO COSIGN
WHAT SAM

5331
02:57:12,155 --> 02:57:14,057
SAID.

5332
02:57:14,057 --> 02:57:17,894
YEAH, FOLKS JUST DO NOT HAVE THE

5333
02:57:17,894 --> 02:57:19,095
EDUCATION ON HOW THESE SYSTEMS

5334
02:57:19,095 --> 02:57:20,296
WORK AND IT'S A CHALLENGE FOR A

5335
02:57:20,296 --> 02:57:25,235
LOT OF PEOPLE.

5336
02:57:25,235 --> 02:57:26,736
I FIND THIS -- AND I THINK I'VE

5337
02:57:26,736 --> 02:57:27,871
SAID THIS BEFORE IN OTHER

5338
02:57:27,871 --> 02:57:31,574
MEETINGS, I FIND THIS WITH THE

5339
02:57:31,574 --> 02:57:32,675
CLINICIANS, RIGHT?

5340
02:57:32,675 --> 02:57:34,777
THEY ARE TRAINED TO -- IN ALL

5341
02:57:34,777 --> 02:57:37,614
DUE RESPECT, AND I SAID IT THIS

5342
02:57:37,614 --> 02:57:38,982
WAY BEFORE, WITH ALL DUE RESPECT

5343
02:57:38,982 --> 02:57:40,517
TO THE CLINICIANS, THE

5344
02:57:40,517 --> 02:57:41,818
RESEARCHERS, YOU GUYS KNOW WHAT

5345
02:57:41,818 --> 02:57:42,919
YOU'RE DOING WHEN IT COMES TO

5346
02:57:42,919 --> 02:57:45,455
BEING A SPECIALIST IN YOUR AREA.

5347
02:57:45,455 --> 02:57:48,091
HOWEVER, IN THE COMMUNITY, THE

5348
02:57:48,091 --> 02:57:50,627
FAMILIES KNOW THAT THE AUTISTIC

5349
02:57:50,627 --> 02:57:51,694
SELF-ADVOCATES, RIGHT, THEY KNOW

5350
02:57:51,694 --> 02:57:52,929
WHAT'S HAPPENING IN THE

5351
02:57:52,929 --> 02:57:53,997
COMMUNITY ON THE GROUND.

5352
02:57:53,997 --> 02:57:55,465
AND THAT'S WHY IT REALLY

5353
02:57:55,465 --> 02:57:58,735
CRITICAL FOR US TO BE PARTNERING

5354
02:57:58,735 --> 02:57:59,836
TOGETHER TO FIGURE OUT, OKAY,

5355
02:57:59,836 --> 02:58:01,838
WHAT WORKS, WHAT DOESN'T WORK,

5356
02:58:01,838 --> 02:58:03,473
AND AGAIN, THERE'S THE ADDED

5357
02:58:03,473 --> 02:58:05,775
LAYER, WHEN YOU KNOW ONE

5358
02:58:05,775 --> 02:58:07,510
AUTISTIC INDIVIDUAL, YOU KNOW

5359
02:58:07,510 --> 02:58:08,545
ONE AUTISTIC INDIVIDUAL.

5360
02:58:08,545 --> 02:58:10,313
SO THAT'S A WHOLE OTHER THING,

5361
02:58:10,313 --> 02:58:11,381
BECAUSE HOW DO YOU CREATE

5362
02:58:11,381 --> 02:58:12,482
PROGRAMMING FOR THE INDIVIDUAL?

5363
02:58:12,482 --> 02:58:15,018
BUT IT NEEDS TO BE DONE IF WE

5364
02:58:15,018 --> 02:58:16,352
REALLY TRULY WANT THE INDIVIDUAL

5365
02:58:16,352 --> 02:58:18,755
TO BE A PART OF SOCIETY AN TO BE

5366
02:58:18,755 --> 02:58:20,924
INCLUDED.

5367
02:58:20,924 --> 02:58:21,124
RIGHT?

5368
02:58:21,124 --> 02:58:22,191
AND THAT'S GOING TO LOOK

5369
02:58:22,191 --> 02:58:23,393
DIFFERENT FOR EACH PERSON.

5370
02:58:23,393 --> 02:58:24,928
JUST LIKE EVERYONE IN THIS ROOM,

5371
02:58:24,928 --> 02:58:27,030
REGARDLESS OF WHETHER WE'RE

5372
02:58:27,030 --> 02:58:28,665
AUTISTIC OR NOT, IS DIFFERENT.

5373
02:58:28,665 --> 02:58:29,966
AND ARE MOVING IN THE WORLD THE

5374
02:58:29,966 --> 02:58:30,867
WAY WE CHOOSE TO MOVE IN THE

5375
02:58:30,867 --> 02:58:31,668
WORLD, RIGHT?

5376
02:58:31,668 --> 02:58:34,837
SO I THINK WHEN WE LOOK AT IT

5377
02:58:34,837 --> 02:58:36,072
FROM THAT LENS, THAT MAKES A

5378
02:58:36,072 --> 02:58:38,241
HUGE DIFFERENCE, BUT WE COULD

5379
02:58:38,241 --> 02:58:39,709
TALK ALL DAY, WHICH WE'LL TALK

5380
02:58:39,709 --> 02:58:41,711
LATER ABOUT CAREGIVING AND LIKE

5381
02:58:41,711 --> 02:58:44,080
THIS CLIFF THAT HAPPENS WHEN

5382
02:58:44,080 --> 02:58:45,548
FOLKS ARE TRANSITIONING TO

5383
02:58:45,548 --> 02:58:47,116
ADULTHOOD, IT IS A MESS, EVEN

5384
02:58:47,116 --> 02:58:49,919
WHEN YOU ARE LINKED IN, YOU

5385
02:58:49,919 --> 02:58:50,920
STILL DON'T KNOW WHAT'S

5386
02:58:50,920 --> 02:58:55,358
HAPPENING AND WHAT YOU'RE DOING.

5387
02:58:55,358 --> 02:58:57,093
>> WE'LL GIVE THE LAST
COMMENT

5388
02:58:57,093 --> 02:59:00,163
TO SCOTT SO WE CAN CLOSE OUT

5389
02:59:00,163 --> 02:59:01,164
THIS SESSION.

5390
02:59:01,164 --> 02:59:03,566
>> THERE'S ONE ONLINE TOO,

5391
02:59:03,566 --> 02:59:03,766
SUSAN.

5392
02:59:03,766 --> 02:59:04,200
>> OKAY.

5393
02:59:04,200 --> 02:59:06,669
WE'LL HAVE TWO THEN.

5394
02:59:06,669 --> 02:59:09,739
SCOTT, THEN DENA.

5395
02:59:09,739 --> 02:59:16,713
>>OKAY, THEN WE CAN MOVE
ON TO

5396
02:59:16,713 --> 02:59:18,114
DENA AN THAT WILL BE THE LAST

5397
02:59:18,114 --> 02:59:18,281
ONE.

5398
02:59:18,281 --> 02:59:20,383
>> I JUST WANTED TO ADD A
P.S.

5399
02:59:20,383 --> 02:59:23,753
TO THAT.

5400
02:59:23,753 --> 02:59:26,256
I HAVE A 35-YEAR-OLD SON, I'M AN

5401
02:59:26,256 --> 02:59:28,224
ADULT AUTISTIC, I'VE NAVIGATED

5402
02:59:28,224 --> 02:59:30,159
EVERY SYSTEM FROM EARLY

5403
02:59:30,159 --> 02:59:31,728
INTERVENTION ALL THE WAY THROUGH

5404
02:59:31,728 --> 02:59:33,596
TO POST SECONDARY INSTRUCTION.

5405
02:59:33,596 --> 02:59:36,332
FOR HIM AND I.

5406
02:59:36,332 --> 02:59:38,735
SOCIAL SECURITY, THE FOOD STAMPS

5407
02:59:38,735 --> 02:59:39,569
OFFICE, HOUSING.

5408
02:59:39,569 --> 02:59:41,504
AND I'M HERE TO SAY TO YOU THAT

5409
02:59:41,504 --> 02:59:45,308
THE GREATEST COST TO PARENTS IS

5410
02:59:45,308 --> 02:59:48,177
THE BURDEN OF HAVING TO FIGURE

5411
02:59:48,177 --> 02:59:50,446
OUT THE HIDDEN CURRICULUM BEHIND

5412
02:59:50,446 --> 02:59:53,383
THESE AGENCY PROTOCOLS.

5413
02:59:53,383 --> 02:59:56,452
IT IS TOTALLY INHUMANE FOR

5414
02:59:56,452 --> 02:59:57,754
PARENTS AND SIBLINGS TO HAVE TO

5415
02:59:57,754 --> 02:59:59,155
LEARN HOW TO MASTER THESE

5416
02:59:59,155 --> 03:00:01,357
SYSTEMS.

5417
03:00:01,357 --> 03:00:02,659
AND PARENT A CHILD WHO HAS NEEDS

5418
03:00:02,659 --> 03:00:05,061
AFTER SCHOOL.

5419
03:00:05,061 --> 03:00:07,397
WE ABSOLUTELY HAVE TO CREATE AN

5420
03:00:07,397 --> 03:00:09,699
ENTIRELY NEW WORKFORCE OF

5421
03:00:09,699 --> 03:00:11,567
SYSTEMS NAVIGATORS WHO ARE NOT

5422
03:00:11,567 --> 03:00:14,537
ALIGNED WITH THE AGENCIES

5423
03:00:14,537 --> 03:00:14,871
DIRECTLY.

5424
03:00:14,871 --> 03:00:17,407
WHEN WE APPROACH AGENCIES FOR

5425
03:00:17,407 --> 03:00:18,641
SUPPORT, THEY'RE LOOKING FOR A

5426
03:00:18,641 --> 03:00:20,743
WAY TO DENY US BENEFITS.

5427
03:00:20,743 --> 03:00:23,246
IT'S ALMOST LIKE A PREDATORY

5428
03:00:23,246 --> 03:00:24,247
RELATIONSHIP THAT THESE PEOPLE

5429
03:00:24,247 --> 03:00:26,015
EXPERIENCE.

5430
03:00:26,015 --> 03:00:29,319
WE NEED IMPARTIAL, UNBIASED

5431
03:00:29,319 --> 03:00:30,720
DIRECT SUPPORT NAVIGATORS WHO

5432
03:00:30,720 --> 03:00:32,655
HAVE MASTERY OVER THESE SYSTEMS,

5433
03:00:32,655 --> 03:00:34,924
SO THAT THAT BURDEN IS REMOVED

5434
03:00:34,924 --> 03:00:36,459
FROM THE FAMILIES.

5435
03:00:36,459 --> 03:00:37,760
THAT DOESN'T MEAN WE DON'T WANT

5436
03:00:37,760 --> 03:00:39,429
A VOICE, THAT DOESN'T MEAN WE

5437
03:00:39,429 --> 03:00:40,963
DON'T WANT TO KNOW ALL OUR

5438
03:00:40,963 --> 03:00:41,964
OPTIONS.

5439
03:00:41,964 --> 03:00:44,567
BUT IT'S JUST INHUMANE TO

5440
03:00:44,567 --> 03:00:47,136
CONTINUE TO DEMAND THAT WE HAVE

5441
03:00:47,136 --> 03:00:50,540
EXPERT MASTERY OF EACH

5442
03:00:50,540 --> 03:00:51,240
DEVELOPMENTAL SYSTEM THAT WE

5443
03:00:51,240 --> 03:00:52,608
HAVE TO GO THROUGH.

5444
03:00:52,608 --> 03:00:54,343
WE HAVE GOT TO CREATE A

5445
03:00:54,343 --> 03:00:57,180
WORKFORCE TO ADDRESS THIS.

5446
03:00:57,180 --> 03:00:58,681
SORRY, I JUST GET REALLY

5447
03:00:58,681 --> 03:00:59,649
IMPASSIONED ABOUT THIS BECAUSE I

5448
03:00:59,649 --> 03:01:00,683
THINK IT'S JUST TOO MUCH FOR

5449
03:01:00,683 --> 03:01:03,553
FAMILIES.

5450
03:01:03,553 --> 03:01:06,689
>> THAT DOES EXIST IN SOME

5451
03:01:06,689 --> 03:01:07,523
STATES, LIKE QUALITY TRUST IN

5452
03:01:07,523 --> 03:01:08,825
D.C.  DOES PROVIDE THAT KIND OF

5453
03:01:08,825 --> 03:01:10,259
SERVICE AND IT SHOULD DEFINITELY

5454
03:01:10,259 --> 03:01:10,993
BE EXPANDED.

5455
03:01:10,993 --> 03:01:11,761
>> ABSOLUTELY.

5456
03:01:11,761 --> 03:01:13,429
THANK YOU.

5457
03:01:13,429 --> 03:01:16,332
>> THANK YOU SO MUCH.

5458
03:01:16,332 --> 03:01:17,633
SHELLI, DO YOU HAVE ANY FINAL

5459
03:01:17,633 --> 03:01:18,067
COMMENTS?

5460
03:01:18,067 --> 03:01:20,369
>> I DO NOT, OTHER THAN I
THINK

5461
03:01:20,369 --> 03:01:22,372
ALL OF THIS CONVERSATION IS A

5462
03:01:22,372 --> 03:01:24,540
GREAT SEGUE INTO OUR FINAL

5463
03:01:24,540 --> 03:01:25,775
SESSION FOR TODAY.

5464
03:01:25,775 --> 03:01:27,076
THERE'S CLEARLY A LOT OF

5465
03:01:27,076 --> 03:01:29,412
INTEREST IN EXPLORING THE ISSUES

5466
03:01:29,412 --> 03:01:31,581
AROUND FAMILY CAREGIVING MORE

5467
03:01:31,581 --> 03:01:34,217
BROADLY AND SO WE'RE PLEASED TO

5468
03:01:34,217 --> 03:01:35,585
INTRODUCE THIS AFTERNOON SESSION

5469
03:01:35,585 --> 03:01:36,552
THAT'S FOCUSED PRECISELY ON

5470
03:01:36,552 --> 03:01:39,288
THIS.

5471
03:01:39,288 --> 03:01:40,390
WE ALL KNOW INDIVIDUALS ON THE

5472
03:01:40,390 --> 03:01:42,391
AUTISM SPECTRUM NEED VARYING

5473
03:01:42,391 --> 03:01:43,192
LEVELS OF SUPPORT TO ENSURE

5474
03:01:43,192 --> 03:01:44,560
THEIR NEEDS ARE MET.

5475
03:01:44,560 --> 03:01:45,695
WE'VE HEARD THAT FROM ALL OF YOU

5476
03:01:45,695 --> 03:01:46,329
TODAY.

5477
03:01:46,329 --> 03:01:49,432
CAREGIVERS ARE RESPONSIBLE FOR

5478
03:01:49,432 --> 03:01:50,533
MANY TASKS, FROM COORDINATING

5479
03:01:50,533 --> 03:01:54,837
WITH TEACHERS, DOCTORS, SERVICE

5480
03:01:54,837 --> 03:01:55,938
PROVIDERS, TO ENSURING SMOOTH

5481
03:01:55,938 --> 03:01:58,474
TRANSITIONS THROUGH LIFE STAGES,

5482
03:01:58,474 --> 03:02:00,777
TO PROVIDING 24/7 CARE IN SOME

5483
03:02:00,777 --> 03:02:01,677
CASES.

5484
03:02:01,677 --> 03:02:02,311
ALL OF THE THINGS YOU ALL HAVE

5485
03:02:02,311 --> 03:02:04,013
BEEN MENTIONING THROUGHOUT THE

5486
03:02:04,013 --> 03:02:05,181
DAY AND PARTICULARLY WITH THESE

5487
03:02:05,181 --> 03:02:07,350
LAST COMMENTS.

5488
03:02:07,350 --> 03:02:09,919
WE RECOGNIZE THE FAMILY

5489
03:02:09,919 --> 03:02:11,020
CAREGIVER SACRIFICE THEIR OWN

5490
03:02:11,020 --> 03:02:12,088
WANTS AND NEEDS IN ORDER TO

5491
03:02:12,088 --> 03:02:13,856
ENSURE THOSE OF THEIR LOVED

5492
03:02:13,856 --> 03:02:15,158
ONES, THE NEEDS OF THEIR LOVED

5493
03:02:15,158 --> 03:02:16,626
ONES ARE MET, AND WE ALSO

5494
03:02:16,626 --> 03:02:17,760
RECOGNIZE THAT THIS OFTEN

5495
03:02:17,760 --> 03:02:19,162
RESULTS IN PHYSICAL OR MENTAL

5496
03:02:19,162 --> 03:02:21,264
HEALTH ISSUES, EMPLOYMENT OR

5497
03:02:21,264 --> 03:02:22,064
FINANCIAL CHALLENGES WITHIN

5498
03:02:22,064 --> 03:02:24,567
THESE FAMILIES AS WELL.

5499
03:02:24,567 --> 03:02:26,536
SO WE WANTED TO SPEND THIS

5500
03:02:26,536 --> 03:02:28,437
AFTERNOON ACKNOWLEDGING THESE

5501
03:02:28,437 --> 03:02:29,539
CHALLENGES AND THE WORK THAT YOU

5502
03:02:29,539 --> 03:02:30,973
DO ON BEHALF OF YOUR LOVED ONES,

5503
03:02:30,973 --> 03:02:32,942
AND WE PLANNED A SESSION

5504
03:02:32,942 --> 03:02:34,343
SPECIFICALLY TO HIGHLIGHT THE

5505
03:02:34,343 --> 03:02:37,046
RESOURCES AVAILABLE FOR FAMILY

5506
03:02:37,046 --> 03:02:37,446
CAREGIVERS.

5507
03:02:37,446 --> 03:02:43,486
AND TO BRING ATTENTION.

5508
03:02:43,486 --> 03:02:45,121
THE ADDITIONAL NEEDS YOU'VE ALL

5509
03:02:45,121 --> 03:02:45,721
BEEN TALKING ABOUT IN YOUR

5510
03:02:45,721 --> 03:02:46,289
COMMUNITIES.

5511
03:02:46,289 --> 03:02:47,423
SO ILL WILL TURN IT OVER TO

5512
03:02:47,423 --> 03:02:49,525
SUSAN NOW TO INTRODUCE OUR FIRST

5513
03:02:49,525 --> 03:02:49,792
SPEAKERS.

5514
03:02:49,792 --> 03:02:53,296
>> THANK YOU, SHELLI.

5515
03:02:53,296 --> 03:02:54,831
SO WE PUT TOGETHER THIS

5516
03:02:54,831 --> 03:02:55,731
AFTERNOON'S SESSION TO PROVIDE

5517
03:02:55,731 --> 03:02:56,766
AN OPPORTUNITY TO THE IACC TO

5518
03:02:56,766 --> 03:02:58,067
HEAR ABOUT THE WORK OF OUR

5519
03:02:58,067 --> 03:03:01,704
SISTER FEDERAL COMMITTEES THAT

5520
03:03:01,704 --> 03:03:03,873
ARE MANAGED BY THE

5521
03:03:03,873 --> 03:03:04,440
ADMINISTRATION FOR COMMUNITY

5522
03:03:04,440 --> 03:03:05,474
LIVING THAT ADDRESS ISSUES

5523
03:03:05,474 --> 03:03:07,443
RELATED TO FAMILY CAREGIVING AND

5524
03:03:07,443 --> 03:03:08,678
AS WE KNOW, THIS IS AN IMPORTANT

5525
03:03:08,678 --> 03:03:11,113
TOPIC IN AUTISM BUT WE ALSO WANT

5526
03:03:11,113 --> 03:03:13,149
TO COORDINATE AND NOT DUPLICATE

5527
03:03:13,149 --> 03:03:13,749
EFFORT WITH OTHER COMMITTEES

5528
03:03:13,749 --> 03:03:17,053
THAT ARE WORKING IN THIS SPACE.

5529
03:03:17,053 --> 03:03:20,389
IN THE IACC, WE TOUCH ON THESE

5530
03:03:20,389 --> 03:03:22,558
ISSUES WITH THE SPECIFICITY OF

5531
03:03:22,558 --> 03:03:25,862
AUTISM, AND THERE IS ALSO A

5532
03:03:25,862 --> 03:03:28,064
COMMITTEE, THE RAISE FAMILY

5533
03:03:28,064 --> 03:03:28,631
CAREGIVING ADVISORY COUNCIL

5534
03:03:28,631 --> 03:03:29,532
THAT'S ASSIGNED A BROADER

5535
03:03:29,532 --> 03:03:31,467
MISSIONARY LATED TO FAMILY

5536
03:03:31,467 --> 03:03:32,735
CAREGIVING FOR INDIVIDUALS WITH

5537
03:03:32,735 --> 03:03:34,937
DISABILITIES AND OLDER ADULTS.

5538
03:03:34,937 --> 03:03:36,239
AND WE WILL HEAR ABOUT THAT

5539
03:03:36,239 --> 03:03:37,340
TODAY.

5540
03:03:37,340 --> 03:03:39,842
AND WE HOPE THAT THE INFORMATION

5541
03:03:39,842 --> 03:03:41,544
SHARED WILL BE CONVEYED TO THE

5542
03:03:41,544 --> 03:03:43,446
RAISE FAMILY CAREGIVING ADVISORY

5543
03:03:43,446 --> 03:03:45,348
COUNCIL SO THAT THEY CAN KNOW

5544
03:03:45,348 --> 03:03:46,382
MORE ABOUT SOME OF THE SPECIFIC

5545
03:03:46,382 --> 03:03:48,351
NEEDS THAT THE AUTISM COMMUNITY

5546
03:03:48,351 --> 03:03:50,553
IS SHARING AND WE'LL MAKE

5547
03:03:50,553 --> 03:03:51,888
CERTAIN TO SHARE THE PUBLIC

5548
03:03:51,888 --> 03:03:54,156
COMMENTS PACKET WITH ACL SO THAT

5549
03:03:54,156 --> 03:03:56,392
YOU CAN PASS IT ALONG TO YOUR

5550
03:03:56,392 --> 03:03:58,895
COMMITTEE AND THEY CAN READ

5551
03:03:58,895 --> 03:04:00,563
THROUGH THE COMMENTS FROM

5552
03:04:00,563 --> 03:04:01,631
FAMILIES OF INDIVIDUALS ON THE

5553
03:04:01,631 --> 03:04:04,233
AUTISM SPECTRUM AND FROM

5554
03:04:04,233 --> 03:04:04,967
AUTISTIC INDIVIDUALS.

5555
03:04:04,967 --> 03:04:06,302
AND THAT IN THE FUTURE, WE HOPE

5556
03:04:06,302 --> 03:04:08,938
THAT OUR COMMITTEES CAN FURTHER

5557
03:04:08,938 --> 03:04:10,172
COLLABORATE AND COORDINATE ON

5558
03:04:10,172 --> 03:04:11,607
THIS REALLY IMPORTANT ISSUE.

5559
03:04:11,607 --> 03:04:14,443
AND CREATE SYNERGY.

5560
03:04:14,443 --> 03:04:16,178
AND WITH THAT, I'D LIKE TO

5561
03:04:16,178 --> 03:04:17,446
INTRODUCE OUR FIRST SPEAKERS FOR

5562
03:04:17,446 --> 03:04:17,980
THIS SESSION.

5563
03:04:17,980 --> 03:04:19,749
SO WE'LL BE STARTING WITH SOME

5564
03:04:19,749 --> 03:04:20,750
PRESENTATIONS.

5565
03:04:20,750 --> 03:04:21,918
M AND FIRST WE'LL BE HEARING

5566
03:04:21,918 --> 03:04:24,487
FROM THE ADMINISTRATION FOR

5567
03:04:24,487 --> 03:04:26,355
COMMUNITY LIVING, DR. JENNIFER

5568
03:04:26,355 --> 03:04:28,658
JOHNSON, AN IACC MEMBER WHO'S

5569
03:04:28,658 --> 03:04:30,459
THE DEPUTY COMMISSIONER OF THE

5570
03:04:30,459 --> 03:04:33,429
ADMINISTRATION ON DISABILITY AND

5571
03:04:33,429 --> 03:04:35,364
MR. JONATHAN WESTIN IS AN AGING

5572
03:04:35,364 --> 03:04:37,166
SERVICES PROGRAM SPECIALIST IN

5573
03:04:37,166 --> 03:04:39,068
THE OFFICE OF SUPPORTIVE AND

5574
03:04:39,068 --> 03:04:42,471
CAREGIVER SERVICES, AND THEY'RE

5575
03:04:42,471 --> 03:04:43,806
GOING TO TALK ABOUT ACL

5576
03:04:43,806 --> 03:04:44,807
ACTIVITIES THAT SUPPORT FAMILY

5577
03:04:44,807 --> 03:04:45,141
CAREGIVERS.

5578
03:04:45,141 --> 03:04:46,442
SO I'LL HAND IT OVER TO YOU,

5579
03:04:46,442 --> 03:04:47,476
JENNIFER AND JONATHAN.

5580
03:04:47,476 --> 03:04:52,748
THANK YOU FOR BEING HERE.

5581
03:04:52,748 --> 03:04:54,517
>> THANK YOU FOR HAVING US
AND

5582
03:04:54,517 --> 03:04:55,251
INCLUDING US TODAY.

5583
03:04:55,251 --> 03:04:57,486
A VERY IMPORTANT TOPIC AS WAS

5584
03:04:57,486 --> 03:04:58,354
EVIDENCED IN THIS DISCUSSION

5585
03:04:58,354 --> 03:05:00,456
THAT WE JUST HAD ABOUT THE

5586
03:05:00,456 --> 03:05:03,459
IMPORTANCE OF SUPPORTING FAMILY

5587
03:05:03,459 --> 03:05:04,460
CAREGIVERS.

5588
03:05:04,460 --> 03:05:05,294
I JUST WANTED TO START BY

5589
03:05:05,294 --> 03:05:06,729
PROVIDING A LITTLE BIT OF

5590
03:05:06,729 --> 03:05:09,265
INFORMATION ABOUT THE

5591
03:05:09,265 --> 03:05:09,832
ADMINISTRATION FOR COMMUNITY

5592
03:05:09,832 --> 03:05:11,701
LIVING OR ACL FOR SHORT.

5593
03:05:11,701 --> 03:05:13,202
IN CASE SOME OF YOU AREN'T

5594
03:05:13,202 --> 03:05:16,639
FAMILIAR WITH US, WE ARE A PAR T

5595
03:05:16,639 --> 03:05:20,910
OF THE U.S. DEPARTMENT OF HEALTH

5596
03:05:20,910 --> 03:05:21,344
AND HUMAN SERVICES.

5597
03:05:21,344 --> 03:05:22,812
WE WERE CREATED ABOUT 12 YEARS

5598
03:05:22,812 --> 03:05:23,846
AGO WITH A MISSION TO ENSURE ALL

5599
03:05:23,846 --> 03:05:26,048
PEOPLE, REGARDLESS OF AGE,

5600
03:05:26,048 --> 03:05:27,683
DISABILITY, OR LEVEL OF SUPPORT

5601
03:05:27,683 --> 03:05:29,585
NEED CAN LIVE AND FULLY

5602
03:05:29,585 --> 03:05:32,121
PARTICIPATE IN THEIR

5603
03:05:32,121 --> 03:05:32,455
COMMUNITIES.

5604
03:05:32,455 --> 03:05:34,090
SO WHAT WE DO IS WE REALLY

5605
03:05:34,090 --> 03:05:34,957
BRIDGE THE COMMON INTEREST OF

5606
03:05:34,957 --> 03:05:36,559
PEOPLE WITH DISABILITIES AND

5607
03:05:36,559 --> 03:05:40,696
OLDER ADULTS TO MAKE SURE THEY

5608
03:05:40,696 --> 03:05:41,797
HAVE THE SUPPORTS THEY NEED TO

5609
03:05:41,797 --> 03:05:42,465
LIVE IN THE COMMUNITY.

5610
03:05:42,465 --> 03:05:44,900
SO THAT'S A VERY HIGH LEVEL

5611
03:05:44,900 --> 03:05:47,203
UMBRELLA OF WHERE WE HAVE

5612
03:05:47,203 --> 03:05:48,637
INTERSECTING INTERESTS OF BOTH

5613
03:05:48,637 --> 03:05:50,473
OLDER ADULTS AND PEOPLE WITH

5614
03:05:50,473 --> 03:05:52,308
DISABILITIES, IN TERMS OF THEIR

5615
03:05:52,308 --> 03:05:53,609
INTEREST TO LIVE IN THE

5616
03:05:53,609 --> 03:05:54,910
COMMUNITY.

5617
03:05:54,910 --> 03:05:56,679
BUT FROM THERE, OBVIOUSLY SOME

5618
03:05:56,679 --> 03:05:58,180
OF THE ISSUES, WHILE THERE ARE

5619
03:05:58,180 --> 03:05:59,482
SOME COMMONALITIES, WE DO DEAL

5620
03:05:59,482 --> 03:06:01,117
WITH ISSUES SPECIFIC TO BOTH THE

5621
03:06:01,117 --> 03:06:03,786
DISABILITY POPULATION AND OLDER

5622
03:06:03,786 --> 03:06:04,320
ADULTS.

5623
03:06:04,320 --> 03:06:08,257
BUT WITH THAT MISSION, WE DO

5624
03:06:08,257 --> 03:06:10,026
FUND A LARGE NUMBER OF

5625
03:06:10,026 --> 03:06:10,893
COMMUNITY-BASED DISABILITY IN

5626
03:06:10,893 --> 03:06:15,097
AGING ORGANIZATIONS IN LOCAL

5627
03:06:15,097 --> 03:06:16,298
COMMUNITIES ACROSS ALL THE U.S.

5628
03:06:16,298 --> 03:06:16,966
STATES OR TERRITORIES.

5629
03:06:16,966 --> 03:06:19,802
WE ALSO INVEST IN RESEARCH AND

5630
03:06:19,802 --> 03:06:22,805
EDUCATION AND INNOVATION THAT

5631
03:06:22,805 --> 03:06:23,572
ADVANCES COMMUNITY LIVING

5632
03:06:23,572 --> 03:06:25,007
OPPORTUNITIES FOR OLDER ADULTS

5633
03:06:25,007 --> 03:06:27,176
AND PEOPLE WITH DISABILITIES.

5634
03:06:27,176 --> 03:06:30,079
SO NOW IN TERMS OF THE TOPIC OF

5635
03:06:30,079 --> 03:06:32,381
CAREGIVING, INCLUDING FAMILY

5636
03:06:32,381 --> 03:06:35,017
CAREGIVING, IT'S LONG BEEN A

5637
03:06:35,017 --> 03:06:38,220
PRIORITY FOR ACL, BECAUSE FOR SO

5638
03:06:38,220 --> 03:06:39,221
LONG, SO MANY FAMILIES HAVE

5639
03:06:39,221 --> 03:06:42,024
REALLY FILLED IN MAJOR GAPS WHEN

5640
03:06:42,024 --> 03:06:44,427
IT COMES TO PROVIDING SUPPORT TO

5641
03:06:44,427 --> 03:06:46,295
OLDER ADULTS AND PEOPLE WITH

5642
03:06:46,295 --> 03:06:49,732
DISABILITIES FOR THEM TO STAY IN

5643
03:06:49,732 --> 03:06:50,332
THE COMMUNITY, ESPECIALLY IF

5644
03:06:50,332 --> 03:06:51,700
THEY'RE AT RISK FOR

5645
03:06:51,700 --> 03:06:53,903
INSTITUTIONALIZATION.

5646
03:06:53,903 --> 03:06:55,704
SO IT BEEN NOT ONLY AN IMPORTANT

5647
03:06:55,704 --> 03:06:58,674
PRIORITY FOR US FOR MANY, MANY,

5648
03:06:58,674 --> 03:07:00,409
MANY YEARS, IT ALSO BEEN AN

5649
03:07:00,409 --> 03:07:01,644
IMPORTANT PRIORITY FOR THIS

5650
03:07:01,644 --> 03:07:02,978
ADMINISTRATION AS SUSAN

5651
03:07:02,978 --> 03:07:04,847
MENTIONED EARLIER IN THE

5652
03:07:04,847 --> 03:07:07,149
PRESIDENT'S EXECUTIVE ORDER THAT

5653
03:07:07,149 --> 03:07:09,151
REALLY RECOGNIZES THE

5654
03:07:09,151 --> 03:07:11,020
SIGNIFICANT ROLE FAMILIES PLAY

5655
03:07:11,020 --> 03:07:12,154
IN CARING FOR THEIR FAMILY

5656
03:07:12,154 --> 03:07:16,192
MEMBERS WHO NEED IT.

5657
03:07:16,192 --> 03:07:17,960
THAT'S REALLY BECAUSE FAMILY

5658
03:07:17,960 --> 03:07:19,895
CAREGIVERS, AS AGAIN WAS

5659
03:07:19,895 --> 03:07:21,764
EVIDENCED IN THE DISCUSSION

5660
03:07:21,764 --> 03:07:24,700
TODAY, REALLY PROVIDE AN

5661
03:07:24,700 --> 03:07:25,901
OVERWHELMING MAJORITY OF

5662
03:07:25,901 --> 03:07:27,369
LONG-TERM CARE IN THE UNITED

5663
03:07:27,369 --> 03:07:28,804
STATES AND ARE FURTHER SUPPORTED

5664
03:07:28,804 --> 03:07:31,474
BY DIRECT SUPPORT PROFESSIONALS,

5665
03:07:31,474 --> 03:07:34,376
BUT AS MENTIONED, WE CERTAINLY

5666
03:07:34,376 --> 03:07:37,947
ARE FACING AN INCREASING CRISIS

5667
03:07:37,947 --> 03:07:40,249
WITH THE NEED FOR DIRECT CARE

5668
03:07:40,249 --> 03:07:41,884
PROFESSIONALS.

5669
03:07:41,884 --> 03:07:45,187
WE ESTIMATE THAT THERE ARE

5670
03:07:45,187 --> 03:07:46,889
53 MILLION OR MORE FAMILY

5671
03:07:46,889 --> 03:07:47,957
CAREGIVERS THAT ARE SUPPORTING

5672
03:07:47,957 --> 03:07:50,493
THEIR LOVED ONES TO STAY IN THE

5673
03:07:50,493 --> 03:07:51,961
COMMUNITY, AND WE KNOW, AGAIN,

5674
03:07:51,961 --> 03:07:53,496
THAT THE SHORTAGE OF DIRECT CARE

5675
03:07:53,496 --> 03:07:55,564
WORKERS IS REALLY PLACING MORE

5676
03:07:55,564 --> 03:07:56,699
RESPONSIBILITIES ON FAMILIES TO

5677
03:07:56,699 --> 03:07:59,869
DO THAT CAREGIVING.

5678
03:07:59,869 --> 03:08:03,839
OF THIS NUMBER, WE ESTIMATE THAT

5679
03:08:03,839 --> 03:08:04,406
2.7 MILLION GRANDPARENTS ARE

5680
03:08:04,406 --> 03:08:06,175
SERVING AS CAREGIVERS TO THEIR

5681
03:08:06,175 --> 03:08:07,910
GRAND CHILDREN, AND THERE IS AN

5682
03:08:07,910 --> 03:08:10,045
UNKNOWN NUMBER OF OTHER RELATIVE

5683
03:08:10,045 --> 03:08:11,580
CAREGIVERS THAT ARE SUPPORTING

5684
03:08:11,580 --> 03:08:13,649
THEIR FAMILY MEMBERS.

5685
03:08:13,649 --> 03:08:16,218
WHEN WE LOOK AT PEOPLE WITH

5686
03:08:16,218 --> 03:08:18,420
INTELLECTUAL AND DEVELOPMENTAL

5687
03:08:18,420 --> 03:08:20,489
DISABILITIES, DATA SHOWS THAT AT

5688
03:08:20,489 --> 03:08:22,258
LEAST 60% OF THOSE THAT ARE

5689
03:08:22,258 --> 03:08:23,826
RECEIVING PUBLICLY FUNDED

5690
03:08:23,826 --> 03:08:25,461
SERVICES AND SUPPORTS, MAINLY

5691
03:08:25,461 --> 03:08:27,329
MEDICAID, ARE LIVING WITH THEIR

5692
03:08:27,329 --> 03:08:30,566
FAMILIES, AND WE CAN ONLY ASSUME

5693
03:08:30,566 --> 03:08:33,202
THAT NUMBER IS THE SAME OR EVEN

5694
03:08:33,202 --> 03:08:34,637
MORE FOR FAMILIES AND

5695
03:08:34,637 --> 03:08:36,172
INDIVIDUALS THAT ARE NOT

5696
03:08:36,172 --> 03:08:37,706
RECEIVING PUBLICLY FUNDED

5697
03:08:37,706 --> 03:08:39,942
SERVICES AND SUPPORTS.

5698
03:08:39,942 --> 03:08:42,011
AND WHAT THIS DATA REFLECTS

5699
03:08:42,011 --> 03:08:44,446
REALLY IS THAT FAMILY MEMBERS

5700
03:08:44,446 --> 03:08:46,882
OFTENTIMES CAN'T JUST BE A

5701
03:08:46,882 --> 03:08:47,683
PARENT.

5702
03:08:47,683 --> 03:08:48,217
A SISTER.

5703
03:08:48,217 --> 03:08:49,451
A BROTHER.

5704
03:08:49,451 --> 03:08:53,589
AND UNCLE, GRANDPARENT, ANY

5705
03:08:53,589 --> 03:08:54,456
FAMILY MEMBER BECAUSE THEY HAVE

5706
03:08:54,456 --> 03:08:56,525
TO ALSO BE THE PERSONAL CARE

5707
03:08:56,525 --> 03:08:58,260
ATTENDANT, THEY HAVE TO BE THE

5708
03:08:58,260 --> 03:08:59,562
DRIVER, THEY HAVE TO BE THE

5709
03:08:59,562 --> 03:09:01,297
SOCIAL WORKER TO NAVIGATE THOSE

5710
03:09:01,297 --> 03:09:02,264
SYSTEMS AND FIGURE OUT THOSE

5711
03:09:02,264 --> 03:09:02,998
FORMS.

5712
03:09:02,998 --> 03:09:04,233
THEY HAVE TO BE THE NURSE

5713
03:09:04,233 --> 03:09:04,767
PRACTITIONER.

5714
03:09:04,767 --> 03:09:06,702
YOU CAN JUST NAME THE LIST OF

5715
03:09:06,702 --> 03:09:08,003
THINGS THAT FAMILY MEMBERS TAKE

5716
03:09:08,003 --> 03:09:12,007
OP ASON AS A RESPONSIBILITY.

5717
03:09:12,007 --> 03:09:13,776
WHEN WE LOOK AT THE COST OF IT,

5718
03:09:13,776 --> 03:09:14,777
JUST THE FINANCIAL COST OF IT,

5719
03:09:14,777 --> 03:09:17,780
WE ESTIMATE THAT CAREGIVERS ARE

5720
03:09:17,780 --> 03:09:22,518
SUPPLYING OVER $600 BILLION IN

5721
03:09:22,518 --> 03:09:26,622
UNPAID CARE, AND EXPERIENCE

5722
03:09:26,622 --> 03:09:27,489
ALMOST $500 BILLION PER YEAR IN

5723
03:09:27,489 --> 03:09:28,357
LOST INCOME.

5724
03:09:28,357 --> 03:09:30,326
SO THOSE ARE SIGNIFICANT

5725
03:09:30,326 --> 03:09:31,527
STAGGERING IN UM BERS IN TERMS

5726
03:09:31,527 --> 03:09:35,864
OF THE FINANCIAL COSTS.

5727
03:09:35,864 --> 03:09:37,299
LIKE I SAID, THE SITUATION IS

5728
03:09:37,299 --> 03:09:38,400
MADE THAT MUCH MORE DIFFICULT BY

5729
03:09:38,400 --> 03:09:41,070
THE SHORTAGE OF DIRECT CARE

5730
03:09:41,070 --> 03:09:41,637
PROFESSIONALS, AND IT'S ONLY

5731
03:09:41,637 --> 03:09:43,505
GOING TO GET WORSE THAN IT

5732
03:09:43,505 --> 03:09:45,474
ALREADY IS, BECAUSE THE

5733
03:09:45,474 --> 03:09:46,442
DEMOGRAPHICS SUGGEST WE WILL

5734
03:09:46,442 --> 03:09:49,478
NEED OVER 1 MILLION MORE DIRECT

5735
03:09:49,478 --> 03:09:53,182
SUPPORT PROFESSIONALS BY 2030.

5736
03:09:53,182 --> 03:09:54,717
SO THIS PROBLEM ISN'T GOING AWAY

5737
03:09:54,717 --> 03:09:55,517
AT ALL.

5738
03:09:55,517 --> 03:09:57,753
AND BECAUSE FEAPS WERE --

5739
03:09:57,753 --> 03:09:59,855
CAREGIVERS WERE REALLY FEELING

5740
03:09:59,855 --> 03:10:02,491
UNSEEN, AND UNSUPPORTED, A GROUP

5741
03:10:02,491 --> 03:10:05,060
OF FAMILY CAREGIVERS EFFECTIVELY

5742
03:10:05,060 --> 03:10:07,896
ADVOCATED FOR LEGISLATION THAT

5743
03:10:07,896 --> 03:10:11,100
LED TO CONGRESS PASSING IN 2018

5744
03:10:11,100 --> 03:10:13,102
LEGISLATION THAT DIRECTED HHS TO

5745
03:10:13,102 --> 03:10:14,637
DEVELOP A NATIONAL FAMILY

5746
03:10:14,637 --> 03:10:18,040
CAREGIVER STRATEGY, AND YOU'LL

5747
03:10:18,040 --> 03:10:20,209
HEAR MORE ABOUT THIS FROM MY

5748
03:10:20,209 --> 03:10:21,443
COLLEAGUE JONATHAN, BUT BEFORE I

5749
03:10:21,443 --> 03:10:22,511
TURN IT OVER, I DID WANT TO

5750
03:10:22,511 --> 03:10:23,379
HIGHLIGHT SOME OF THE OTHER WORK

5751
03:10:23,379 --> 03:10:26,849
WE HAVE IN ACL THAT WE HAVE

5752
03:10:26,849 --> 03:10:30,352
INVESTED INTO SUPPORT FAMILIES.

5753
03:10:30,352 --> 03:10:32,521
WITHIN ACL, I AM WITH THE

5754
03:10:32,521 --> 03:10:36,225
ADMINISTRATION ON DISABILITIES,

5755
03:10:36,225 --> 03:10:37,860
AND ONE OF THE PROGRAMS WE

5756
03:10:37,860 --> 03:10:39,895
ADMINISTER IS THE DEVELOPMENTAL

5757
03:10:39,895 --> 03:10:40,729
DISABILITIES ASSISTANCE AND BILL

5758
03:10:40,729 --> 03:10:42,398
OF RIGHTS ACT, WHICH HAS LONG

5759
03:10:42,398 --> 03:10:44,266
RECOGNIZED THE IMPORTANCE --

5760
03:10:44,266 --> 03:10:46,869
IMPORTANT ROLE OF FAMILIES AND

5761
03:10:46,869 --> 03:10:49,438
FAMILIES HAVE ALWAYS BEEN

5762
03:10:49,438 --> 03:10:50,773
IMPORTANT IN THE DD ACT.

5763
03:10:50,773 --> 03:10:53,742
AND AS A RESULT, WE HAVE OVER

5764
03:10:53,742 --> 03:10:56,045
THE YEARS MANY YEARS INVESTED IN

5765
03:10:56,045 --> 03:10:57,780
FAMILY SUPPORT PROJECTS AND

5766
03:10:57,780 --> 03:10:59,815
THAT'S BEEN PROJECTS OVER

5767
03:10:59,815 --> 03:11:01,784
DECADES OF INVESTMENT.

5768
03:11:01,784 --> 03:11:02,985
ALSO OUR PROGRAMS THAT ARE

5769
03:11:02,985 --> 03:11:05,554
FUNDED UNDER THE ACT, THE STATE

5770
03:11:05,554 --> 03:11:07,556
COUNCILS ON DEVELOPMENTAL

5771
03:11:07,556 --> 03:11:08,424
DISABILITIES, OUR UNIVERSITY

5772
03:11:08,424 --> 03:11:10,292
CENTERS FOR EXCELLENCE IN

5773
03:11:10,292 --> 03:11:11,126
DEVELOPMENTAL DISABILITIES AND

5774
03:11:11,126 --> 03:11:13,829
THE PROTECTION AND ADVOCACY

5775
03:11:13,829 --> 03:11:15,264
SYSTEMS ALL ARE DOING WORK IN

5776
03:11:15,264 --> 03:11:16,865
VARIOUS WAYS TO SUPPORT FAMILIES

5777
03:11:16,865 --> 03:11:19,168
OR TO CHANGE POLICIES IN THE

5778
03:11:19,168 --> 03:11:20,703
STATE TO BETTER SUPPORT

5779
03:11:20,703 --> 03:11:21,470
FAMILIES.

5780
03:11:21,470 --> 03:11:23,739
WE'VWE'VE ALSO FUNDED NATIONAL

5781
03:11:23,739 --> 03:11:24,606
PROJECTS THAT HAVE HELPED TO

5782
03:11:24,606 --> 03:11:25,941
BUILD STRONGER FAMILY SUPPORT

5783
03:11:25,941 --> 03:11:29,712
SYSTEMS IN A NUMBER OF STATES,

5784
03:11:29,712 --> 03:11:30,813
INCLUDING THOSE USING THE

5785
03:11:30,813 --> 03:11:31,680
CHARTING THE LIFE COURSE TOOLS

5786
03:11:31,680 --> 03:11:32,781
THAT WERE DEVELOPED THROUGH A

5787
03:11:32,781 --> 03:11:37,119
PROJECT THAT WE FUNDED THAT

5788
03:11:37,119 --> 03:11:38,187
NUMEROUS STATES AND LOCAL

5789
03:11:38,187 --> 03:11:39,288
COMMUNITIES ARE NOW USING TO

5790
03:11:39,288 --> 03:11:42,691
SUPPORT FAMILIES.

5791
03:11:42,691 --> 03:11:43,792
WE'RE CURRENTLY INVESTING IN A

5792
03:11:43,792 --> 03:11:45,928
PROJECT CALLED THE BRIDGING AND

5793
03:11:45,928 --> 03:11:48,230
AGING -- BRIDGING THE AGING AND

5794
03:11:48,230 --> 03:11:49,965
DISABILITIES NETWORKS, WHICH IS

5795
03:11:49,965 --> 03:11:52,401
ADDRESSING THE NEEDS OF AN

5796
03:11:52,401 --> 03:11:53,869
ESTIMATED OVER 1 MILLION

5797
03:11:53,869 --> 03:11:57,106
FAMILIES IN THE U.S. WHO BOTH

5798
03:11:57,106 --> 03:12:00,008
HAVE ADULTS WITH IDD BUT ALSO

5799
03:12:00,008 --> 03:12:02,644
ARE BEING CARED FOR BY AGING

5800
03:12:02,644 --> 03:12:03,612
CAREGIVERS.

5801
03:12:03,612 --> 03:12:05,280
AND WE ESTIMATE THAT TWO THIRDS

5802
03:12:05,280 --> 03:12:07,316
OF THESE FAMILIES DON'T HAVE

5803
03:12:07,316 --> 03:12:09,618
ADVANCED CARE PLANS.

5804
03:12:09,618 --> 03:12:11,153
MAKING IT A UNIQUE SITUATION AND

5805
03:12:11,153 --> 03:12:15,824
NEED FOR AGING FAMILIES AN A

5806
03:12:15,824 --> 03:12:16,358
CRITICAL ISSUE.

5807
03:12:16,358 --> 03:12:20,362
THAT'S BECAUSE NOT ONLY FAMILIES

5808
03:12:20,362 --> 03:12:21,463
WITH AN AGING FAMILY MEMBER WITH

5809
03:12:21,463 --> 03:12:25,401
IDD HAVE TO ACCESS MULTIPLE

5810
03:12:25,401 --> 03:12:27,069
SYSTEMS, BUT AGING PARENTS WHO

5811
03:12:27,069 --> 03:12:28,337
ARE PROVIDING THAT SUPPORT WILL

5812
03:12:28,337 --> 03:12:29,505
REQUIRE THEIR OWN SUPPORT AS

5813
03:12:29,505 --> 03:12:30,939
THEY AGE, AND SO IT'S VERY

5814
03:12:30,939 --> 03:12:32,775
IMPORTANT THAT WE START TO THINK

5815
03:12:32,775 --> 03:12:36,912
MORE ABOUT HOW WE'RE CREATING

5816
03:12:36,912 --> 03:12:37,813
MORE COORDINATED SERVICES FOR

5817
03:12:37,813 --> 03:12:41,717
BOTH OLDER ADULTS WITH AND

5818
03:12:41,717 --> 03:12:42,785
WITHOUT -- WELL, OLDER ADULTS AS

5819
03:12:42,785 --> 03:12:45,421
THEY AGE INTO DISABILITY AND

5820
03:12:45,421 --> 03:12:50,225
THEN OLDER ADULTS WITH

5821
03:12:50,225 --> 03:12:51,827
INTELLECTUAL DISABILITIES.

5822
03:12:51,827 --> 03:12:52,694
SO THEY HAVE A COMMUNITY OF

5823
03:12:52,694 --> 03:12:54,496
PRACTICE WHERE THEY'RE

5824
03:12:54,496 --> 03:12:55,597
SUPPORTING 17 STATES, AND REALLY

5825
03:12:55,597 --> 03:12:58,300
BUILDING THE CAPACITY BOTH

5826
03:12:58,300 --> 03:13:02,771
ACROSS AND WITHIN THE STATE'S SS

5827
03:13:02,771 --> 03:13:04,373
AGING AND DISABILITY NETWORKS TO

5828
03:13:04,373 --> 03:13:05,407
BETTER SUPPORT INDIVIDUALS WITH

5829
03:13:05,407 --> 03:13:07,342
IDD AS THEY AGE AND THEIR FAMILY

5830
03:13:07,342 --> 03:13:09,878
CAREGIVERS AS THEY AGE TO

5831
03:13:09,878 --> 03:13:12,214
IMPROVE THE PLANNING TO ADDRESS

5832
03:13:12,214 --> 03:13:13,549
THEIR INDIVIDUAL NEEDS, GOALS

5833
03:13:13,549 --> 03:13:14,983
AND PREFERENCES ACROSS THE

5834
03:13:14,983 --> 03:13:18,253
LIFESPAN.

5835
03:13:18,253 --> 03:13:19,455
I ALSO WANTED TO BRIEFLY MENTION

5836
03:13:19,455 --> 03:13:21,423
A FEW OTHER ACTIVITIES WITHIN

5837
03:13:21,423 --> 03:13:21,957
ACL.

5838
03:13:21,957 --> 03:13:24,660
WE SUPPORT THE PRESIDENT'S

5839
03:13:24,660 --> 03:13:26,328
COMMITTEE FOR PEOPLE WITH

5840
03:13:26,328 --> 03:13:27,196
INTELLECTUAL DISABILITIES, WHICH

5841
03:13:27,196 --> 03:13:29,898
IS ALSO A FEDERAL ADVISORY

5842
03:13:29,898 --> 03:13:31,500
COMMITTEE, AND THEY'RE CURRENTLY

5843
03:13:31,500 --> 03:13:34,303
WORKING ON THEIR REPORT TO THE

5844
03:13:34,303 --> 03:13:34,937
PRESIDENT, AND THE REPORT THAT

5845
03:13:34,937 --> 03:13:37,439
THEY'RE WORKING ON IS FOCUSED

5846
03:13:37,439 --> 03:13:38,974
BROADLY ON HOW HIGH QUALITY HOME

5847
03:13:38,974 --> 03:13:40,776
AND COMMUNITY-BASED SERVICES CAN

5848
03:13:40,776 --> 03:13:43,645
BEST SUPPORT INDIVIDUALS WITH

5849
03:13:43,645 --> 03:13:44,279
INTELLECTUAL DISABILITIES TO

5850
03:13:44,279 --> 03:13:45,848
LIVE WELL IN THE COMMUNITY AND

5851
03:13:45,848 --> 03:13:47,883
WHILE THE REPORT DOESN'T HAVE A

5852
03:13:47,883 --> 03:13:50,486
SPECIFIC FOCUS ON FAMILY

5853
03:13:50,486 --> 03:13:52,454
CAREGIVING, MANY OF THE TOPICS

5854
03:13:52,454 --> 03:13:55,190
AND RECOMMENDATIONS IF

5855
03:13:55,190 --> 03:13:56,792
IMPLEMENTED WOULD HAVE A

5856
03:13:56,792 --> 03:13:58,694
POSITIVE IMPACT ON FAMILIES,

5857
03:13:58,694 --> 03:14:00,229
THIS WAS DISCUSSED IN THE

5858
03:14:00,229 --> 03:14:02,965
PREVIOUS DISCUSSION.

5859
03:14:02,965 --> 03:14:03,999
SUSAN ALSO MENTIONED THE 20

5860
03:14:03,999 --> 03:14:05,100
STATES THAT ARE RECEIVING

5861
03:14:05,100 --> 03:14:06,969
SUPPORT TO ADDRESS THE DIRECT

5862
03:14:06,969 --> 03:14:08,837
CARE WORKER RECRUITMENT AND

5863
03:14:08,837 --> 03:14:11,306
RETENTION ISSUES THAT WE'VE

5864
03:14:11,306 --> 03:14:11,640
TALKED ABOUT.

5865
03:14:11,640 --> 03:14:13,942
AND THAT WORK IS ACTUALLY BEING

5866
03:14:13,942 --> 03:14:15,577
DONE THROUGH OUR DIRECT CARE

5867
03:14:15,577 --> 03:14:17,779
WORKFORCE CENTER THAT WE ARE

5868
03:14:17,779 --> 03:14:18,747
FUNDING, AND THEY ARE THE ONES

5869
03:14:18,747 --> 03:14:20,749
THAT ARE WORKING WITH THE 20

5870
03:14:20,749 --> 03:14:22,317
STATES THAT ARE WORKING TO

5871
03:14:22,317 --> 03:14:24,887
ADDRESS THAT GROWING CRISIS AND

5872
03:14:24,887 --> 03:14:26,722
THE LACK OF DIRECT CARE WORKERS,

5873
03:14:26,722 --> 03:14:27,656
IN ADDITION TO OTHER ACTIVITY

5874
03:14:27,656 --> 03:14:29,057
THAT THEY'RE DOING INCLUDING A

5875
03:14:29,057 --> 03:14:31,193
WEBSITE THAT HAS RESOURCES ON

5876
03:14:31,193 --> 03:14:35,964
THE DIRECT CARE WORKFORCE.

5877
03:14:35,964 --> 03:14:37,466
I ALSO WANTED TO BRIEFLY MENTION

5878
03:14:37,466 --> 03:14:39,434
A PROJECT THAT WE ARE FUNDING

5879
03:14:39,434 --> 03:14:41,837
CALLED THE CENTER FOR YOUTH

5880
03:14:41,837 --> 03:14:43,572
VOICE YOUTH CHOICE, AND THIS IS

5881
03:14:43,572 --> 03:14:44,439
ADDRESSING SOME OF THE COMMENTS

5882
03:14:44,439 --> 03:14:46,975
THAT WERE MADE ABOUT

5883
03:14:46,975 --> 03:14:48,143
ALTERNATIVES TO GUARDIANSHIP AND

5884
03:14:48,143 --> 03:14:50,445
THE IMPORTANCE OF HAVING

5885
03:14:50,445 --> 03:14:53,248
RESOURCES AROUND ALTERNATIVES TO

5886
03:14:53,248 --> 03:14:53,815
GUARDIANSHIP.

5887
03:14:53,815 --> 03:14:55,817
SO THIS CENTER IS AIMED AT YOUTH

5888
03:14:55,817 --> 03:14:57,786
TO ADDRESS THE SCHOOL TO

5889
03:14:57,786 --> 03:14:59,121
GUARDIANSHIP -- I'M SORRY -- THE

5890
03:14:59,121 --> 03:15:00,689
SCHOOL TO GUARDIANSHIP PIPELINE

5891
03:15:00,689 --> 03:15:05,294
FOR MANY YOUTH SO THAT THEY CAN

5892
03:15:05,294 --> 03:15:07,462
BECOME MORE INFORMED 

5893
03:15:07,462 --> 03:15:10,232
ALTERNATIVES TO GUARDIANSHIP AS

5894
03:15:10,232 --> 03:15:11,400
THEY BECOME A LEGAL ADULT.

5895
03:15:11,400 --> 03:15:12,801
WHILE THE FOCUS OF THE CENTER IS

5896
03:15:12,801 --> 03:15:14,636
ON YOUTH AND ONE OF THE GREAT

5897
03:15:14,636 --> 03:15:16,038
HIGHLIGHTS OF THIS PROJECT IS

5898
03:15:16,038 --> 03:15:18,340
THE DEVELOPMENT OF YOUTH

5899
03:15:18,340 --> 03:15:21,076
AMBASSADORS, WE CURRENTLY HAVE

5900
03:15:21,076 --> 03:15:22,578
41 AMBASSADORS THAT ARE BEING

5901
03:15:22,578 --> 03:15:25,013
DEVELOPED AS PEER LEADERS ON

5902
03:15:25,013 --> 03:15:26,615
ALTERNATIVES TO GUARDIANSHIP,

5903
03:15:26,615 --> 03:15:28,483
AND I'M PLEASED TO SAY THAT THE

5904
03:15:28,483 --> 03:15:30,352
GROUP IS VERY, VERY DIVERSE, IF

5905
03:15:30,352 --> 03:15:32,054
I SHOWED A PICTURE RIGHT NOW YOU

5906
03:15:32,054 --> 03:15:34,890
WOULD SEE THE DIVERSITY OF THOSE

5907
03:15:34,890 --> 03:15:36,091
YOUTH AMBASSADORS.

5908
03:15:36,091 --> 03:15:38,260
BUT THE RESOURCE CENTER ALSO HAS

5909
03:15:38,260 --> 03:15:42,197
RESOURCES FOR FAMILIES SO THEY

5910
03:15:42,197 --> 03:15:43,966
CAN SUPPORT THEIR YOUTH AND

5911
03:15:43,966 --> 03:15:45,867
UNDERSTAND ALTERNATIVES TO

5912
03:15:45,867 --> 03:15:47,102
GUARDIANSHIP AS WELL AS THEY

5913
03:15:47,102 --> 03:15:47,769
TRANSITION INTO ADULTHOOD.

5914
03:15:47,769 --> 03:15:49,071
THE LAST PROGRAM I WANTED TO

5915
03:15:49,071 --> 03:15:53,308
HIGHLIGHT IS A RESOURCE, THE

5916
03:15:53,308 --> 03:15:54,309
LIFESPAN RESPITE CARE PROGRAM

5917
03:15:54,309 --> 03:15:57,679
THAT WE HAVE ADMINISTERED SINCE

5918
03:15:57,679 --> 03:15:57,879
2009.

5919
03:15:57,879 --> 03:15:59,648
I THINK AGAIN ALL THE COMMENTS

5920
03:15:59,648 --> 03:16:00,782
KIND OF ALLUDED TO THE

5921
03:16:00,782 --> 03:16:02,351
IMPORTANCE OF RESPITE CARE FOR

5922
03:16:02,351 --> 03:16:04,753
FAMILY CAREGIVERS, BECAUSE IT'S

5923
03:16:04,753 --> 03:16:05,854
AN ESSENTIAL COMPONENT OF HOME

5924
03:16:05,854 --> 03:16:10,225
AND COMMUNITY-BASED SERVICES AS

5925
03:16:10,225 --> 03:16:11,960
A CONTRIBUTOR TO HEALTHIER

5926
03:16:11,960 --> 03:16:13,161
FAMILIES AND THE HEALTH AND

5927
03:16:13,161 --> 03:16:14,596
WELL-BEING OF CAREGIVERS AND

5928
03:16:14,596 --> 03:16:16,965
ALSO THE CARE RECIPIENTS.

5929
03:16:16,965 --> 03:16:20,202
SO UNDER THIS PROGRAM, ACL HAS

5930
03:16:20,202 --> 03:16:22,971
AWARDED COMPETITIVE GRANTS TO

5931
03:16:22,971 --> 03:16:24,273
ELIGIBLE AGENCIES IN 38 STATES

5932
03:16:24,273 --> 03:16:26,975
AND THE DISTRICT OF COLUMBIA.

5933
03:16:26,975 --> 03:16:28,644
AND THE GRANTS ARE DESIGNED TO

5934
03:16:28,644 --> 03:16:30,278
CREATE COORDINATED STATE SYSTEMS

5935
03:16:30,278 --> 03:16:31,780
OF ACCESSIBLE COMMUNITY-BASED

5936
03:16:31,780 --> 03:16:34,883
RESPITE CARE SERVICES.

5937
03:16:34,883 --> 03:16:37,019
SO NOT ONLY ARE THEY PROVIDING

5938
03:16:37,019 --> 03:16:38,654
THAT AS A RESOURCE, THEY'RE ALSO

5939
03:16:38,654 --> 03:16:41,523
FOCUSED ON ELEVATING THE CALIBER

5940
03:16:41,523 --> 03:16:43,892
AND THE AVAILABILITY OF RESPITE

5941
03:16:43,892 --> 03:16:45,193
SERVICES THROUGH THE EXPANSION

5942
03:16:45,193 --> 03:16:47,729
AND ENRICHMENT OF RESPITE

5943
03:16:47,729 --> 03:16:52,301
SERVICES WITHIN STATES, AND ALSO

5944
03:16:52,301 --> 03:16:52,868
ENHANCING DISSEMINATION AND

5945
03:16:52,868 --> 03:16:53,802
COORDINATION OF THOSE SERVICES.

5946
03:16:53,802 --> 03:16:54,970
THEY'RE ALSO WORKING TO

5947
03:16:54,970 --> 03:16:56,972
FACILITATE EASE OF ACCESS TO THE

5948
03:16:56,972 --> 03:16:58,940
RESPITE CARE PROGRAMS, AND

5949
03:16:58,940 --> 03:17:00,809
IDENTIFYING AND ADDRESSING ANY

5950
03:17:00,809 --> 03:17:01,910
EXISTING SERVICE GAPS IN THE

5951
03:17:01,910 --> 03:17:03,512
STATES AND THE DISTRICT OF

5952
03:17:03,512 --> 03:17:06,682
COLUMBIA, AND THEN ENHANCING THE

5953
03:17:06,682 --> 03:17:10,719
OVERALL QUALITY OF PRESENT

5954
03:17:10,719 --> 03:17:11,987
RESPITE SERVICES THAT ARE BEING

5955
03:17:11,987 --> 03:17:12,254
PROVIDED.

5956
03:17:12,254 --> 03:17:14,322
SO THESE RESPITE PROGRAMS

5957
03:17:14,322 --> 03:17:16,158
SUPPORT FAMILY CAREGIVERS OF

5958
03:17:16,158 --> 03:17:18,260
CHILDREN AND ADULTS ACROSS ALL

5959
03:17:18,260 --> 03:17:19,961
AGE GROUPS, DISABILITIES, AND

5960
03:17:19,961 --> 03:17:22,497
ALSO CHRONIC CONDITIONS.

5961
03:17:22,497 --> 03:17:26,735
AND THE VEST PIET CAR RESPITE CH

5962
03:17:26,735 --> 03:17:28,170
PLANNED AND EMERGENCY BASED AND

5963
03:17:28,170 --> 03:17:29,471
EXPANDED TO INDIVIDUALS NEEDING

5964
03:17:29,471 --> 03:17:30,872
ASSISTANCE TO TEMPORARILY

5965
03:17:30,872 --> 03:17:31,740
RELIEVE FAMILY CAREGIVERS.

5966
03:17:31,740 --> 03:17:34,576
AS PART OF THIS WORK, ACL HAS

5967
03:17:34,576 --> 03:17:37,846
FUNDED THE ARCH NATIONAL RESPITE

5968
03:17:37,846 --> 03:17:39,047
NETWORK AND RESOURCE CENTER TO

5969
03:17:39,047 --> 03:17:42,117
PROVIDE TA TO THE LIFESPAN

5970
03:17:42,117 --> 03:17:45,387
RESPITE PROGRAM GRANTEES AND THE

5971
03:17:45,387 --> 03:17:48,223
FIELD SINCE 2009.

5972
03:17:48,223 --> 03:17:49,558
SO AS I CLOSE OUT MY PART, I

5973
03:17:49,558 --> 03:17:51,193
JUST WANTED TO QUICKLY TOUCH

5974
03:17:51,193 --> 03:17:53,228
UPON THE TOPIC OF DATA, WHICH

5975
03:17:53,228 --> 03:17:54,663
WAS MENTIONED BY ONE OF OUR

5976
03:17:54,663 --> 03:17:56,098
PUBLIC COMMENTERS AND THE

5977
03:17:56,098 --> 03:17:58,934
IMPORTANCE OF HAVING DATA ON

5978
03:17:58,934 --> 03:18:01,203
SUPPORT FOR FAMILIES AND FAMILY

5979
03:18:01,203 --> 03:18:03,205
CAREGIVERS, AND WHILE WE'VE MADE

5980
03:18:03,205 --> 03:18:04,940
PROGRESS ON HAVING SOME OF THAT

5981
03:18:04,940 --> 03:18:06,975
DATA, WE REALLY DO NEED TO HAVE

5982
03:18:06,975 --> 03:18:09,811
MORE DATA AND DATA ON A REGULAR

5983
03:18:09,811 --> 03:18:12,581
BASIS ON THE FAMILY EXPERIENCE,

5984
03:18:12,581 --> 03:18:16,251
AND WE NEED THIS ON ALL FAMILIES

5985
03:18:16,251 --> 03:18:18,453
REGARDLESS OF WHETHER THEY ARE

5986
03:18:18,453 --> 03:18:20,188
SUPPORTED BY THE STATE OR NOT,

5987
03:18:20,188 --> 03:18:21,623
IF THEY'RE RECEIVING PUBLICLY

5988
03:18:21,623 --> 03:18:23,158
FUNDED SUPPORTS OR NOT, WE NEED

5989
03:18:23,158 --> 03:18:24,793
IT ON ALL INDIVIDUALS WHO ARE

5990
03:18:24,793 --> 03:18:26,862
PROVIDING SUPPORT TO THEIR LOVED

5991
03:18:26,862 --> 03:18:28,163
ONES.

5992
03:18:28,163 --> 03:18:29,064
SO NOW I WOULD LIKE TO TURN IT

5993
03:18:29,064 --> 03:18:31,032
OVER TO MY COLLEAGUE JONATHAN

5994
03:18:31,032 --> 03:18:33,702
WESTIN, WHO IS RELATIVELY NEW TO

5995
03:18:33,702 --> 03:18:35,036
OUR AGENCY BUT ALREADY MAKING A

5996
03:18:35,036 --> 03:18:36,004
GREAT IMPACT IN TERMS OF THE

5997
03:18:36,004 --> 03:18:38,974
WORK THAT WE ARE DOING.

5998
03:18:38,974 --> 03:18:42,144
AS WAS MENTIONED, HE'S AN AGING

5999
03:18:42,144 --> 03:18:43,345
SERVICES PROGRAM SPECIALIST IN

6000
03:18:43,345 --> 03:18:45,080
OUR OFFICE OF SUPPORTIVE AND

6001
03:18:45,080 --> 03:18:50,085
CAREGIVER SERVICES IN THE

6002
03:18:50,085 --> 03:18:50,852
ADMINISTRATION ON AGING, SO I'LL

6003
03:18:50,852 --> 03:18:57,659
TURN IT OVER TO YOU, JONATHAN.

6004
03:18:57,659 --> 03:18:58,727
>> JENNIFER, THANK YOU
VERY

6005
03:18:58,727 --> 03:18:59,127
MUCH.

6006
03:18:59,127 --> 03:19:00,262
I ALSO JUST WANTED TO TAKE A

6007
03:19:00,262 --> 03:19:02,664
NOTE AND THANK YOU FOR YOW

6008
03:19:02,664 --> 03:19:03,632
INCREDIBLE LEADERSHIP REGARDING

6009
03:19:03,632 --> 03:19:05,000
OUR AGENCY ON DISABILITY, THE

6010
03:19:05,000 --> 03:19:06,034
WORK THAT THEY HAVE DONE THROUGH

6011
03:19:06,034 --> 03:19:08,203
THE YEARS.

6012
03:19:08,203 --> 03:19:10,205
YOU COULD NOT ASK FOR A MORE

6013
03:19:10,205 --> 03:19:11,139
COMMITTED STAFF AROUND

6014
03:19:11,139 --> 03:19:12,140
DISABILITY THAN JENNIFER, SO

6015
03:19:12,140 --> 03:19:12,407
THANK YOU.

6016
03:19:12,407 --> 03:19:14,409
>> CAN YOU BRING THE MIC
CLOSER,

6017
03:19:14,409 --> 03:19:14,643
PLEASE?

6018
03:19:14,643 --> 03:19:16,745
>> I CERTAINLY CAN, THAT
MIGHT

6019
03:19:16,745 --> 03:19:18,513
THE FIRST TIME ANYONE ACCUSED ME

6020
03:19:18,513 --> 03:19:20,248
OF NOT BEING ABLE TO HEAR ME

6021
03:19:20,248 --> 03:19:21,883
GIVEN THIS VOICE, BUT CAN

6022
03:19:21,883 --> 03:19:22,651
EVERYONE HEAR ME NOW?

6023
03:19:22,651 --> 03:19:23,018
EXCELLENT.

6024
03:19:23,018 --> 03:19:23,652
THANK YOU VERY MUCH.

6025
03:19:23,652 --> 03:19:25,921
REALLY APPRECIATE THIS

6026
03:19:25,921 --> 03:19:29,391
OPPORTUNITY TO PRESENT TO YOU

6027
03:19:29,391 --> 03:19:29,558
ALL.

6028
03:19:29,558 --> 03:19:30,926
IF WE CAN ADVANCE THE SLIDE THAT

6029
03:19:30,926 --> 03:19:31,326
WOULD BE GREAT.

6030
03:19:31,326 --> 03:19:32,127
THANK YOU.

6031
03:19:32,127 --> 03:19:35,864
SO HOW DO WE CREATE A WORLD

6032
03:19:35,864 --> 03:19:37,165
WHERE CAREGIVING IS ACCEPT TRAL

6033
03:19:37,165 --> 03:19:38,800
TO WHO WE ARE AS OPPOSED TO

6034
03:19:38,800 --> 03:19:40,936
SOMETHING THAT DIVERTS US OR IS

6035
03:19:40,936 --> 03:19:42,504
A SIDELINE OF OUR REAL LIVES?

6036
03:19:42,504 --> 03:19:44,806
THIS WAS A QUESTION POSED BY

6037
03:19:44,806 --> 03:19:47,409
KARYL ZERNIAL, THE RAISE COUNCIL

6038
03:19:47,409 --> 03:19:47,876
CO-CHAIR.

6039
03:19:47,876 --> 03:19:49,110
WE'RE GOING TO GET INTO THE

6040
03:19:49,110 --> 03:19:56,952
RAISE COUNCIL IN A MOMENT.

6041
03:19:56,952 --> 03:19:58,186
SO THE RAISE, WHICH AS JENNIFER

6042
03:19:58,186 --> 03:19:59,821
MENTIONED WAS AN ACT PASSED IN

6043
03:19:59,821 --> 03:20:03,525
2018, STANDS FOR RECOGNIZE,

6044
03:20:03,525 --> 03:20:08,563
ASSIST, INCLUDE SUPPORT AND

6045
03:20:08,563 --> 03:20:12,067
ENGAGE -- THIS WAS PASSED IN

6046
03:20:12,067 --> 03:20:15,237
2018, AND IT ALSO INCLUDES A

6047
03:20:15,237 --> 03:20:17,105
NATIONAL STRATEGY TO SUPPORT

6048
03:20:17,105 --> 03:20:17,973
FAMILY CAREGIVERS, WHICH I'M

6049
03:20:17,973 --> 03:20:21,142
GOING TO BE DERLVING INTO IN A

6050
03:20:21,142 --> 03:20:21,710
MOMENT.

6051
03:20:21,710 --> 03:20:24,579
SO THERE ARE THREE KEY

6052
03:20:24,579 --> 03:20:25,881
COMPONENTS TO THE RAISE ACT.

6053
03:20:25,881 --> 03:20:27,649
THERE'S THE FAMILY CAREGIVING

6054
03:20:27,649 --> 03:20:29,417
ADVISORY COUNCIL, THAT'S THE

6055
03:20:29,417 --> 03:20:32,220
RAISE COUNCIL, THERE IS THE

6056
03:20:32,220 --> 03:20:33,889
INITIAL REPORT TO CONGRESS, AND

6057
03:20:33,889 --> 03:20:35,090
THERE'S THE NATIONAL FAMILY

6058
03:20:35,090 --> 03:20:39,027
CAREGIVING STRATEGY.

6059
03:20:39,027 --> 03:20:41,863
THE INITIAL REPORT IS CURRENTLY

6060
03:20:41,863 --> 03:20:43,832
IN WHAT THEY CALL HHS CLEARANCE

6061
03:20:43,832 --> 03:20:47,769
RIGHT NOW, AND THAT WILL BE, WE

6062
03:20:47,769 --> 03:20:49,537
HOPE, AS LONG AS IT DOES GO

6063
03:20:49,537 --> 03:20:53,775
THROUGH CLEARANCE SMOOTHLY,

6064
03:20:53,775 --> 03:20:54,776
TRANSACTED TO CONGRESS SOMETIME

6065
03:20:54,776 --> 03:20:58,480
THIS FALL.

6066
03:20:58,480 --> 03:21:01,516
WE PRIDE OURSELVES AT ACL,

6067
03:21:01,516 --> 03:21:02,183
ADMINISTRATION ON AGING WHICH IS

6068
03:21:02,183 --> 03:21:07,722
PART OF ACL SINCE THE MERGER, ON

6069
03:21:07,722 --> 03:21:10,158
MAXIMIZING PUBLIC ENGAGEMENT AT

6070
03:21:10,158 --> 03:21:11,693
EVERY STEP ALONG THE WAY.

6071
03:21:11,693 --> 03:21:14,596
SO FOR STARTERS, ACL BACK IN

6072
03:21:14,596 --> 03:21:15,931
2019 HAD A REQUEST FOR

6073
03:21:15,931 --> 03:21:17,799
INFORMATION OR AN RFI.

6074
03:21:17,799 --> 03:21:22,570
WE GOT 1,613 RESPONSES.

6075
03:21:22,570 --> 03:21:24,005
75% OF THESE RESPONSES WERE

6076
03:21:24,005 --> 03:21:26,308
THERE FAMILY CAREGIVERS.

6077
03:21:26,308 --> 03:21:34,482
THERE WAS A WHOLE TROPH OF WHOLF

6078
03:21:34,482 --> 03:21:36,284
CAREGIVING FOCUS GROUPS, WE

6079
03:21:36,284 --> 03:21:37,085
PRIDED OURSELVES TO ENSURE THAT

6080
03:21:37,085 --> 03:21:39,821
ALL POPULATIONS WERE REPRESENTED

6081
03:21:39,821 --> 03:21:42,357
INCLUDING TEENS, BECAUSE TEENS

6082
03:21:42,357 --> 03:21:43,491
MAY COMPRISE THE MAJORITY OF

6083
03:21:43,491 --> 03:21:46,461
WHAT WE CALL OUR CAREGIVING

6084
03:21:46,461 --> 03:21:49,864
YOUTH, AND THEY ARE A POPULATION

6085
03:21:49,864 --> 03:21:51,599
THAT WE NOT ONLY CARE ABOUT, BUT

6086
03:21:51,599 --> 03:21:52,701
ARE WATCHING EVERY STEP OF THE

6087
03:21:52,701 --> 03:21:55,337
WAY.

6088
03:21:55,337 --> 03:21:57,706
WE ALSO ENGAGED AND CREATED A

6089
03:21:57,706 --> 03:21:59,240
BUNCH OF STAKEHOLDER LISTENING

6090
03:21:59,240 --> 03:21:59,741
SESSIONS.

6091
03:21:59,741 --> 03:22:01,543
WE HAD SIX SESSIONS THAT FOCUSED

6092
03:22:01,543 --> 03:22:05,347
ON THE OPERATIONAL -- PUTTING

6093
03:22:05,347 --> 03:22:08,984
INTO OPERATIONS, THERE'S A TURNG

6094
03:22:08,984 --> 03:22:12,020
TONGUE TWISTER FOR ME, FOCUSING

6095
03:22:12,020 --> 03:22:12,787
ON THE OPERATIONS.

6096
03:22:12,787 --> 03:22:14,689
SO IT WAS HOW WE OPERATIONALIZED

6097
03:22:14,689 --> 03:22:16,224
THESE AND HOW WE MAKE THEM, I

6098
03:22:16,224 --> 03:22:17,926
WOULD SAY, THE MOST PRAGMATIC

6099
03:22:17,926 --> 03:22:19,894
THAT THEY CAN BE FOR THE FAMILY

6100
03:22:19,894 --> 03:22:21,529
CAREGIVING POPULATION.

6101
03:22:21,529 --> 03:22:26,001
OVER THE PAST PERIOD OF A YEAR

6102
03:22:26,001 --> 03:22:28,403
BETWEEN DECEMBER 2020 AND

6103
03:22:28,403 --> 03:22:31,339
DECEMBER 2021, WE HAD SEVERAL

6104
03:22:31,339 --> 03:22:34,409
INTERVIEWED AND LISTENING

6105
03:22:34,409 --> 03:22:38,213
SESSIONS, 17 INTERVIEWS,

6106
03:22:38,213 --> 03:22:40,181
22 LISTENING SESSIONS AND WE

6107
03:22:40,181 --> 03:22:41,916
ALSO SOLICITED THE ADVICE AND

6108
03:22:41,916 --> 03:22:45,754
GUIDANCE OF 145 STAKEHOLDER

6109
03:22:45,754 --> 03:22:47,055
ORGANIZATIONS VESTED IN FAMILY

6110
03:22:47,055 --> 03:22:48,590
CARE GIVING APPROACHES.

6111
03:22:48,590 --> 03:22:50,892
AND THESE INCLUDED STATE

6112
03:22:50,892 --> 03:22:52,994
ENTITIES, COUNTIES, EMPLOYERS,

6113
03:22:52,994 --> 03:22:55,497
BOTH LARGE EMPLOYERS AND SMALL

6114
03:22:55,497 --> 03:22:58,733
ONES, THE HEALTHCARE AND THE

6115
03:22:58,733 --> 03:23:00,935
LONG-TERM SERVICES AND SUPPORTS

6116
03:23:00,935 --> 03:23:01,936
PROVIDERS, AS WELL AS

6117
03:23:01,936 --> 03:23:07,075
FAITH-BASED ORGANIZATIONS.

6118
03:23:07,075 --> 03:23:08,543
WE ENSURE THAT THERE WOULD BE

6119
03:23:08,543 --> 03:23:11,980
ONE STRATEGY AND FOUR COMPONENTS

6120
03:23:11,980 --> 03:23:15,183
OF  THAT ONE STRATEGY.

6121
03:23:15,183 --> 03:23:17,886
THESE COMPONENTS WERE COMPRISED

6122
03:23:17,886 --> 03:23:19,087
OF THE 2022 NATIONAL STRATEGY TO

6123
03:23:19,087 --> 03:23:20,955
SUPPORT FAMILY CAREGIVERS, WHICH

6124
03:23:20,955 --> 03:23:24,325
IS AN OVERVIEW AND DESCRIPTION

6125
03:23:24,325 --> 03:23:26,561
OF THE STRATEGY GOALS AND THE

6126
03:23:26,561 --> 03:23:28,897
INTENDED OUTCOMES.

6127
03:23:28,897 --> 03:23:32,534
SECONDLY, WE ISSUED A DOCUMENT

6128
03:23:32,534 --> 03:23:34,169
CALLED FIRST PRINCIPLES, WHICH

6129
03:23:34,169 --> 03:23:36,671
WAS ENTAILED THE CROSS-CUTTING

6130
03:23:36,671 --> 03:23:38,640
CONSIDERATIONS FOR FAMILY

6131
03:23:38,640 --> 03:23:39,941
CAREGIVERS TO ENSURE THAT THEY

6132
03:23:39,941 --> 03:23:42,777
HAD THE SUPPORT THAT WAS NEEDED.

6133
03:23:42,777 --> 03:23:44,112
THESE WERE FOUR KEY PRINCIPLES

6134
03:23:44,112 --> 03:23:45,847
THAT HAD TO BE REFLECTED IN ALL

6135
03:23:45,847 --> 03:23:48,817
EFFORTS TO IMPROVE SUPPORT TO

6136
03:23:48,817 --> 03:23:51,553
THE FAMILY CAREGIVER.

6137
03:23:51,553 --> 03:23:52,220
FEDERAL ACTIONS.

6138
03:23:52,220 --> 03:23:54,055
I'M ACTUALLY FRANKLY -- NOT TO

6139
03:23:54,055 --> 03:23:56,591
INSERT MY OPINION HERE BUT I

6140
03:23:56,591 --> 03:23:57,459
GUESS -- MOST PROUD OF THIS

6141
03:23:57,459 --> 03:23:59,427
PRONG.

6142
03:23:59,427 --> 03:24:01,629
NEARLY 350 ACTIONS THAT 15

6143
03:24:01,629 --> 03:24:03,498
FEDERAL AGENCIES TOOK INTO

6144
03:24:03,498 --> 03:24:05,700
ACCOUNT IN THE NEAR TERM TO

6145
03:24:05,700 --> 03:24:08,436
BEGIN IMPLEMENTATION OF THAT

6146
03:24:08,436 --> 03:24:08,903
STRATEGY.

6147
03:24:08,903 --> 03:24:10,738
I AM IN THE PROCESS OF SPEAKING

6148
03:24:10,738 --> 03:24:11,573
VIRTUALLY TO ALL THESE.

6149
03:24:11,573 --> 03:24:13,641
WE CALL THEM FEDERAL AGENCY

6150
03:24:13,641 --> 03:24:16,811
MEMBERS, TO SEE WHAT THEY'VE

6151
03:24:16,811 --> 03:24:17,579
ACCOMPLISHED, WHAT THEY'RE

6152
03:24:17,579 --> 03:24:19,347
HAVING CHALLENGES ACCOMPLISHING,

6153
03:24:19,347 --> 03:24:22,817
WHAT'S ON TAP FOR FUTURE

6154
03:24:22,817 --> 03:24:24,385
ACCOMPLISHMENTS, AND MOLES, I

6155
03:24:24,385 --> 03:24:25,553
THINK, FASCINATING, WHAT THEY

6156
03:24:25,553 --> 03:24:28,523
HAVE LEARNED FROM WHAT THEY'VE

6157
03:24:28,523 --> 03:24:29,724
ACCOMPLISHED, LIKE PEELING BACK

6158
03:24:29,724 --> 03:24:32,660
AN ONION, AND HOW THAT, PERHAPS,

6159
03:24:32,660 --> 03:24:34,496
ALTERS THEIR VIEW OF FUTURE

6160
03:24:34,496 --> 03:24:34,996
ACTIONS MOVING FORWARD.

6161
03:24:34,996 --> 03:24:38,766
SO THIS IS ALWAYS MEANT TO BE

6162
03:24:38,766 --> 03:24:40,001
FOR THE AGENCIES A WORK IN

6163
03:24:40,001 --> 03:24:41,836
PROGRESS.

6164
03:24:41,836 --> 03:24:44,272
AND IT IS AS I MENTIONED LIKE

6165
03:24:44,272 --> 03:24:45,240
PEELING BACK AN ONION.

6166
03:24:45,240 --> 03:24:46,307
WE DON'T KNOW ENOUGH ABOUT

6167
03:24:46,307 --> 03:24:47,742
FAMILY CAREGIVERS, WE DON'T KNOW

6168
03:24:47,742 --> 03:24:49,210
ENOUGH ABOUT THEIR STRUGGLES,

6169
03:24:49,210 --> 03:24:55,083
AND THIS IS HAVING SOME VERY

6170
03:24:55,083 --> 03:24:55,950
TARGETED CONSEQUENCES FOR WHAT

6171
03:24:55,950 --> 03:24:57,652
WE ARE DOING MOVING FORWARD

6172
03:24:57,652 --> 03:24:58,987
BECAUSE THIS IS A GROWTH AREA.

6173
03:24:58,987 --> 03:25:00,822
ACTIONS FOR STATES, COMMUNITIES

6174
03:25:00,822 --> 03:25:03,424
AND OTHERS, THERE ARE ABOUT 150

6175
03:25:03,424 --> 03:25:05,860
ACTIONS THAT WE ARE ALSO

6176
03:25:05,860 --> 03:25:07,829
MONITORING BY STATES, BY

6177
03:25:07,829 --> 03:25:09,364
COUNTIES, EVEN BY LARGE

6178
03:25:09,364 --> 03:25:11,733
METROPOLITAN AREAS ON WHAT

6179
03:25:11,733 --> 03:25:13,801
FAMILY CAREGIVING ENTAILS FOR

6180
03:25:13,801 --> 03:25:15,436
THEIR RESIDENTS AND HOW WE COULD

6181
03:25:15,436 --> 03:25:17,739
MAKE A MEANINGFUL IMPACT MOVING

6182
03:25:17,739 --> 03:25:21,109
FORWARD.

6183
03:25:21,109 --> 03:25:23,044
SO LET ME -- LET'S PICTURE TWO

6184
03:25:23,044 --> 03:25:24,512
BUCKETS HERE ABOUT WHAT THE

6185
03:25:24,512 --> 03:25:26,581
STRATEGY IS AND WHAT IT'S NOT.

6186
03:25:26,581 --> 03:25:29,984
SO THE STRATEGY REPRESENTS A

6187
03:25:29,984 --> 03:25:33,588
VISION AND A ROAD MAP FOR

6188
03:25:33,588 --> 03:25:35,023
CHANGE, A BASELINE FOR ACTION

6189
03:25:35,023 --> 03:25:38,293
AND PROGRESS, FRAMEWORK FOR ALL

6190
03:25:38,293 --> 03:25:41,896
CAREGIVING SITUATIONS AND

6191
03:25:41,896 --> 03:25:43,531
EXPERIENCES, AS WELL AS THE FACT

6192
03:25:43,531 --> 03:25:46,034
THAT IT MUST BE INTENDED FOR USE

6193
03:25:46,034 --> 03:25:47,635
BY MANY STAKEHOLDER GROUPS.

6194
03:25:47,635 --> 03:25:50,071
WE DID NOT WANT TO MAKE THIS

6195
03:25:50,071 --> 03:25:51,472
SOME ESOTERIC DOCUMENT THAT

6196
03:25:51,472 --> 03:25:53,041
WOULD BE VERY DIFFICULT TO

6197
03:25:53,041 --> 03:25:54,442
IMPLEMENT.

6198
03:25:54,442 --> 03:25:56,211
WE WANTED TO MAKE IT CRISP,

6199
03:25:56,211 --> 03:25:58,179
CLEAR, AND ABOVE ALL ELSE,

6200
03:25:58,179 --> 03:25:58,513
ACTIONABLE.

6201
03:25:58,513 --> 03:26:00,248
FOR THE FAMILY CAREGIVERS, AND

6202
03:26:00,248 --> 03:26:03,651
FOR THE POPULATIONS THAT FEED IN

6203
03:26:03,651 --> 03:26:05,086
TO THE FAMILY CAREGIVER

6204
03:26:05,086 --> 03:26:06,287
THEMSELVES.

6205
03:26:06,287 --> 03:26:07,855
THE STRATEGY IS NOT A TIMELINE

6206
03:26:07,855 --> 03:26:09,524
OR A HOW-TO DOCUMENT.

6207
03:26:09,524 --> 03:26:10,959
WE DIDN'T FEEL THAT THIS WAS OUR

6208
03:26:10,959 --> 03:26:12,160
ROLE GIVEN THE CHARGE THAT WE

6209
03:26:12,160 --> 03:26:13,561
HAD DUE TO THE PASSAGE OF THE

6210
03:26:13,561 --> 03:26:15,563
RAISE ACT BACK IN 2018.

6211
03:26:15,563 --> 03:26:19,267
IT IS NOT A LIST OF REQUIREMENTS

6212
03:26:19,267 --> 03:26:20,235
OR MUSTS.

6213
03:26:20,235 --> 03:26:21,202
WE FELL THAT, AGAIN, THERE

6214
03:26:21,202 --> 03:26:22,904
NEEDED TO BE SOME FLEXIBILITY AT

6215
03:26:22,904 --> 03:26:26,007
THE STATE LOCALITY LEVEL, AND WE

6216
03:26:26,007 --> 03:26:28,209
ALSO WANTED TO, IF YOU WILL, NOT

6217
03:26:28,209 --> 03:26:30,945
LEAN IN BUT LEAN BACK JUST A BIT

6218
03:26:30,945 --> 03:26:33,014
TO GET OUT OF THE FEEDBACK THAT

6219
03:26:33,014 --> 03:26:37,752
WE FELT WAS NECESSARY FROM POOR

6220
03:26:37,752 --> 03:26:38,920
CONSTITUENCIES, THOSE THAT I

6221
03:26:38,920 --> 03:26:40,221
MENTIONED EARLIER IN MY REMARKS.

6222
03:26:40,221 --> 03:26:44,392
THERE'S ALSO NOW SUPPOSED TO

6223
03:26:44,392 --> 03:26:45,793
BE -- EXHAUSTIVE OF ALL

6224
03:26:45,793 --> 03:26:46,694
POSSIBILITIES.

6225
03:26:46,694 --> 03:26:48,429
THIS HAD TO BE SOMETHING THAT,

6226
03:26:48,429 --> 03:26:49,297
YES, WE WOULD PROVIDE DIRECTION

6227
03:26:49,297 --> 03:26:51,266
AND INSTRUCTION TO, BUT IT HAD

6228
03:26:51,266 --> 03:26:53,868
TO BE SOMETHING THAT CAME FROM

6229
03:26:53,868 --> 03:26:55,536
THE GROUND UP, FROM THE TRENCHES

6230
03:26:55,536 --> 03:26:55,870
UP.

6231
03:26:55,870 --> 03:26:59,073
THAT TO US WAS VERY IMPORTANT.

6232
03:26:59,073 --> 03:27:01,276
IT'S CLEARLY SOMETHING AS I

6233
03:27:01,276 --> 03:27:02,710
MENTIONED THAT IS EVOLUTIONARY

6234
03:27:02,710 --> 03:27:06,648
WORK IN PROGRESS.

6235
03:27:06,648 --> 03:27:08,583
THIS SLIDE REALLY ENCOMPASSES, I

6236
03:27:08,583 --> 03:27:11,352
FEEL, THE PHILOSOPHY OF HOW WE

6237
03:27:11,352 --> 03:27:12,654
INTERPRETED THE RAISE ACT.

6238
03:27:12,654 --> 03:27:13,855
IT'S A WHOLE OF SOCIETY

6239
03:27:13,855 --> 03:27:15,823
APPROACH.

6240
03:27:15,823 --> 03:27:16,925
SO HERE ARE SOME OF THE

6241
03:27:16,925 --> 03:27:17,892
DIFFERENT GROUPS WE CAN SEE UP

6242
03:27:17,892 --> 03:27:20,828
HERE THAT REPRESENT SOME OF THE

6243
03:27:20,828 --> 03:27:23,131
CROSS-CUTTING SECTIONS THAT ARE

6244
03:27:23,131 --> 03:27:24,932
ENGAGED AND INVOLVED ON A DAILY,

6245
03:27:24,932 --> 03:27:27,735
SOMETIMES HOURLY BASIS WITH A

6246
03:27:27,735 --> 03:27:29,804
FAMILY CAREGIVER AND THEIR

6247
03:27:29,804 --> 03:27:31,105
FAMILIES.

6248
03:27:31,105 --> 03:27:33,408
THEY CONSIST OF STATE TRIBES,

6249
03:27:33,408 --> 03:27:34,175
COUNTY GOVERNMENTS AND THE

6250
03:27:34,175 --> 03:27:34,842
COMMUNITY.

6251
03:27:34,842 --> 03:27:36,811
REALLY THIS IS FIRST FOR A

6252
03:27:36,811 --> 03:27:38,446
REASON.

6253
03:27:38,446 --> 03:27:39,647
THIS ENCOMPASSES A MAJORITY OF

6254
03:27:39,647 --> 03:27:41,849
FOLKS HERE THAT ARE ENGAGED IN

6255
03:27:41,849 --> 03:27:44,052
FAMILY CAREGIVING.

6256
03:27:44,052 --> 03:27:44,652
COMMUNITY-BASED PROVIDERS OF

6257
03:27:44,652 --> 03:27:45,820
LONG-TERM SERVICES AND SUPPORTS,

6258
03:27:45,820 --> 03:27:52,894
MANY OF WHOM HAVE SEEN UNPRESS

6259
03:27:52,894 --> 03:27:54,329
UNPRECEDENTED CLOSURES OF

6260
03:27:54,329 --> 03:27:55,630
INSTITUTIONAL PROVIDERS, WHICH

6261
03:27:55,630 --> 03:27:57,365
HAS HAD A CHILLING EFFECT ON

6262
03:27:57,365 --> 03:27:58,800
DEMAND AND INCREASED TRAIN ON

6263
03:27:58,800 --> 03:27:59,567
THE HOME AND COMMUNITY-BASED

6264
03:27:59,567 --> 03:28:00,368
PROVIDER AND IT'S CALLED INTO

6265
03:28:00,368 --> 03:28:01,469
QUESTION SOME OF THE SCANT

6266
03:28:01,469 --> 03:28:03,104
RESOURCES THAT WERE AVAILABLE

6267
03:28:03,104 --> 03:28:05,106
ALREADY AND HOW THEY HAVE BECOME

6268
03:28:05,106 --> 03:28:06,741
MORE RARE THAT WE'RE FORCED TO

6269
03:28:06,741 --> 03:28:09,577
LOOK AT GIVEN THESE CHANGES AND

6270
03:28:09,577 --> 03:28:10,678
TRENDS POST COVID.

6271
03:28:10,678 --> 03:28:12,847
CHILD WELFARE AGENCIES, KINSHIP

6272
03:28:12,847 --> 03:28:15,049
SUPPORT SYSTEMS.

6273
03:28:15,049 --> 03:28:19,020
WE ACTUALLY DELVE INTO ON A

6274
03:28:19,020 --> 03:28:21,756
RELATED COMMITTEE CALLED -- A

6275
03:28:21,756 --> 03:28:24,926
LOT OF SLANG TERM IS KINCARE BUT

6276
03:28:24,926 --> 03:28:26,160
THAT KINSHIP, WHAT THAT MEANS

6277
03:28:26,160 --> 03:28:27,428
AND HOW WE CAN ALSO SUPPORT

6278
03:28:27,428 --> 03:28:29,497
THOSE GRANDPARENTS RAISING

6279
03:28:29,497 --> 03:28:32,767
GRANDCHILDREN THROUGH MY

6280
03:28:32,767 --> 03:28:36,738
COLLEAGUE LAURIE STAFFS THAT

6281
03:28:36,738 --> 03:28:37,405
COMMITTEE.

6282
03:28:37,405 --> 03:28:38,473
HEALTHCARE SYSTEMS OF COURSE I

6283
03:28:38,473 --> 03:28:40,441
WOULD SAY THE HEALTHCARE SYSTEM

6284
03:28:40,441 --> 03:28:44,212
AS YOU ALL KNOW IN THIS ROOM HAS

6285
03:28:44,212 --> 03:28:48,549
TI TAKEN ON INCREASING --

6286
03:28:48,549 --> 03:28:50,818
MERGERS AND ACQUISITIONS, WHAT

6287
03:28:50,818 --> 03:28:52,153
THEY MEAN TO CARE, PARTICULARLY

6288
03:28:52,153 --> 03:28:53,121
IN THIS HEALTH TECHNOLOGY

6289
03:28:53,121 --> 03:28:54,021
ENVIRONMENT THAT WE LIVE IN.

6290
03:28:54,021 --> 03:28:56,424
I MENTIONED THE COMMUNITIES

6291
03:28:56,424 --> 03:28:59,660
REALLY -- FAITH-BASED

6292
03:28:59,660 --> 03:29:01,095
ORGANIZATIONS ARE VITAL IN THIS

6293
03:29:01,095 --> 03:29:02,830
AREA.

6294
03:29:02,830 --> 03:29:03,965
PHILANTHROPY, ANOTHER

6295
03:29:03,965 --> 03:29:06,567
FOUNDATIONAL COMPONENT, AND

6296
03:29:06,567 --> 03:29:09,070
RESEARCH FOR US HOLD A MAJOR

6297
03:29:09,070 --> 03:29:10,505
PLACE, AND WE'RE GOING TO GO

6298
03:29:10,505 --> 03:29:12,306
OVER JUST IN A MOMENT THE

6299
03:29:12,306 --> 03:29:13,775
NATIONAL CAREGIVING SUPPORT

6300
03:29:13,775 --> 03:29:14,475
COLLABORATIVE, WHICH I'M PLEASED

6301
03:29:14,475 --> 03:29:16,310
TO STAFF AS WELL, AND DISCUSS

6302
03:29:16,310 --> 03:29:17,979
THE IMPORTANCE OF RESEARCH.

6303
03:29:17,979 --> 03:29:19,614
BECAUSE WE NEED TO BUILD THAT

6304
03:29:19,614 --> 03:29:21,048
BENCH OUT.

6305
03:29:21,048 --> 03:29:22,884
ADVOCATES, FAMILY CAREGIVERS,

6306
03:29:22,884 --> 03:29:31,626
CARE REA S RECIPIENTS, VIRTUALLY

6307
03:29:31,626 --> 03:29:34,829
ANYONE WHO HAS BEEN TOUCHED,

6308
03:29:34,829 --> 03:29:36,130
PEOPLE, YOUR FAMILY, YOURSELF,

6309
03:29:36,130 --> 03:29:36,898
PEOPLE IN YOUR COMMUNITY THAT

6310
03:29:36,898 --> 03:29:38,866
YOU MIGHT BE CLOSE TO.

6311
03:29:38,866 --> 03:29:39,734
SO LET'S TALK ABOUT THAT

6312
03:29:39,734 --> 03:29:42,503
NATIONAL STRATEGY AS A DRIVER

6313
03:29:42,503 --> 03:29:46,607
FOR CHANGE.

6314
03:29:46,607 --> 03:29:48,476
RUNNING THROUGH THESE SLIDES BUT

6315
03:29:48,476 --> 03:29:49,811
I'VE GOT A LOT OF CONTENT TO

6316
03:29:49,811 --> 03:29:50,411
BREEZE THROUGH.

6317
03:29:50,411 --> 03:29:51,779
>> IF YOU CAN SORT OF GIVE
US

6318
03:29:51,779 --> 03:29:53,614
THE HIGH LEVEL MESSAGES FOR EACH

6319
03:29:53,614 --> 03:29:54,615
OF THESE, THAT WOULD BE REALLY

6320
03:29:54,615 --> 03:29:55,883
GREAT AND WE CAN TRY TO KEEP ON

6321
03:29:55,883 --> 03:29:56,150
TIME HERE.

6322
03:29:56,150 --> 03:29:57,452
>> YOU GOT IT.

6323
03:29:57,452 --> 03:29:58,653
MY APOLOGIES FOR THAT.

6324
03:29:58,653 --> 03:29:59,620
>> NO PROBLEM AT ALL.

6325
03:29:59,620 --> 03:30:01,389
>> NATIONAL CAREGIVER
SUPPORT

6326
03:30:01,389 --> 03:30:03,257
COLLABORATIVE, LET ME FOCUS ON

6327
03:30:03,257 --> 03:30:04,792
THAT AND THE M.O. OF THIS SLIDE

6328
03:30:04,792 --> 03:30:05,226
HERE.

6329
03:30:05,226 --> 03:30:10,031
WE HAVE FIVE GRANTEES, ONE GOAL

6330
03:30:10,031 --> 03:30:12,033
YOU A PIECE, AS WELL AS

6331
03:30:12,033 --> 03:30:13,000
TECHNICAL ASSISTANCE

6332
03:30:13,000 --> 03:30:15,403
COORDINATION THAT WE DO AND

6333
03:30:15,403 --> 03:30:16,304
PRIDE OURSELVES ON.

6334
03:30:16,304 --> 03:30:17,605
THESE GRANTEE GOALS INCLUDE

6335
03:30:17,605 --> 03:30:18,306
RESEARCH.

6336
03:30:18,306 --> 03:30:21,542
THEY ALSO INCLUDE A FAMILY

6337
03:30:21,542 --> 03:30:22,844
CAREGIVER ADULT, FAMILY

6338
03:30:22,844 --> 03:30:24,178
CAREGIVER COORDINATION AND

6339
03:30:24,178 --> 03:30:27,114
SUPPORT FOR ADULT CAREGIVERS

6340
03:30:27,114 --> 03:30:28,749
FLEURCHLT AS WELL AS EDUCATION

6341
03:30:28,749 --> 03:30:31,052
AND OUTREACH, AS WELL AS

6342
03:30:31,052 --> 03:30:32,687
COORDINATION OF CARE.

6343
03:30:32,687 --> 03:30:33,454
LASTLY, FINANCIAL SECURITY.

6344
03:30:33,454 --> 03:30:36,557
THAT'S A BIG ONE.

6345
03:30:36,557 --> 03:30:37,558
SO WE HOPE THAT THE STRATEGY

6346
03:30:37,558 --> 03:30:39,694
WILL BE A UNIFYING STRUCTURE FOR

6347
03:30:39,694 --> 03:30:42,964
WORKING TOGETHER.

6348
03:30:42,964 --> 03:30:46,934
THAT IS FOR US A MAJOR IMPETUS.

6349
03:30:46,934 --> 03:30:49,303
WE KNOW IT'S ALREADY SERVED AS A

6350
03:30:49,303 --> 03:30:50,938
FRAMEWORK FOR COMMUNITY

6351
03:30:50,938 --> 03:30:55,109
PLANNING, AND IT HAS ALSO

6352
03:30:55,109 --> 03:30:56,644
SPEARHEADED EMPLOYER ENGAGEMENT

6353
03:30:56,644 --> 03:30:58,279
AS WE GET UNDERWAY.

6354
03:30:58,279 --> 03:31:00,815
WE ARE VERY PLEASED TO HAVE AS A

6355
03:31:00,815 --> 03:31:04,085
PARTNER IN THIS THE JOHN A.

6356
03:31:04,085 --> 03:31:05,086
HARTFORD FOUNDATION WHICH HAS IN

6357
03:31:05,086 --> 03:31:07,488
TURN FUNDED THE NATIONAL ACADEMY

6358
03:31:07,488 --> 03:31:10,791
FOR STATE HEALTH POLICY OR

6359
03:31:10,791 --> 03:31:12,226
NASHP.

6360
03:31:12,226 --> 03:31:14,295
THIS ENCOMPASSES A LOT OF THE

6361
03:31:14,295 --> 03:31:16,197
WORK THAT WE DO TO HAVE THESE

6362
03:31:16,197 --> 03:31:17,999
EXTRA RESOURCES AND TO REALLY

6363
03:31:17,999 --> 03:31:18,966
UNDERSTAND STATE FAMILY

6364
03:31:18,966 --> 03:31:19,400
CAREGIVING POLICY.

6365
03:31:19,400 --> 03:31:22,403
SO AS WE LOOK AHEAD, ALMOST DONE

6366
03:31:22,403 --> 03:31:22,937
HERE, SUSAN.

6367
03:31:22,937 --> 03:31:24,672
AS WE LOOK AHEAD, WE LOOK TO THE

6368
03:31:24,672 --> 03:31:27,341
JOINT RAISE/SG RG COUNCIL

6369
03:31:27,341 --> 03:31:28,075
REPORT, WHICH IS AGAIN IN

6370
03:31:28,075 --> 03:31:28,543
MOTION.

6371
03:31:28,543 --> 03:31:30,011
WE HOPE TO HAVE TO CONGRESS IN

6372
03:31:30,011 --> 03:31:32,446
THE FALL, AFTER CLEARANCES.

6373
03:31:32,446 --> 03:31:34,649
FEDERAL AGENCIES THAT WE WILL

6374
03:31:34,649 --> 03:31:36,417
BEGIN MEETING WITH ON A FAR MORE

6375
03:31:36,417 --> 03:31:38,619
REGULAR BASIS, THESE FEDERAL

6376
03:31:38,619 --> 03:31:41,556
AGENCY MEMBERS OF THE RAISE AND

6377
03:31:41,556 --> 03:31:44,625
SCRG, TO BETTER COORDINATE WITH

6378
03:31:44,625 --> 03:31:47,128
THEM TO NOT ONLY ENSURE THEY ARE

6379
03:31:47,128 --> 03:31:49,897
MEETING THE GOALS THAT

6380
03:31:49,897 --> 03:31:51,732
THEY'VE -- HOW THOSE GOALS HAVE

6381
03:31:51,732 --> 03:31:55,670
EVOLVED INTO NEW GOALS.

6382
03:31:55,670 --> 03:31:57,171
THE SUBCOMMITTEES WE HAVE WILL

6383
03:31:57,171 --> 03:32:00,641
BE NOT ONLY GATHERING

6384
03:32:00,641 --> 03:32:01,842
INFORMATION AND -- THEY'LL

6385
03:32:01,842 --> 03:32:03,578
REVIEW RESEARCH AND DATA AND

6386
03:32:03,578 --> 03:32:05,680
BEGIN CRAFTING IDEAS FOR

6387
03:32:05,680 --> 03:32:07,448
NON-FEDERAL SECTOR UPDATES FOR

6388
03:32:07,448 --> 03:32:09,417
THE STRATEGY IN 2025.

6389
03:32:09,417 --> 03:32:14,855
AND I'LL INWIT END WITH A QUOTEM

6390
03:32:14,855 --> 03:32:17,158
OUR ADMINISTRATOR, ACTING

6391
03:32:17,158 --> 03:32:17,959
ADMINISTRATOR.

6392
03:32:17,959 --> 03:32:20,661
WE NOW HAVE AN UNPRECEDENTED

6393
03:32:20,661 --> 03:32:21,796
OPPORTUNITY TO ACHIEVE AND GO

6394
03:32:21,796 --> 03:32:23,431
FAR BEYOND THE GOALS CONGRESS

6395
03:32:23,431 --> 03:32:25,833
ESTABLISHED IN THE RAISE FAMILY

6396
03:32:25,833 --> 03:32:26,200
CAREGIVERS ACT.

6397
03:32:26,200 --> 03:32:27,802
WE DO HOPE THAT YOU ALL ARE A

6398
03:32:27,802 --> 03:32:30,538
PART OF THIS, AND WE'RE VERY

6399
03:32:30,538 --> 03:32:32,406
GRATEFUL FOR THE OPPORTUNITY AT

6400
03:32:32,406 --> 03:32:33,941
AOA WITHIN ACL TO BE PRESENTING

6401
03:32:33,941 --> 03:32:34,809
BEFORE YOU ALL TODAY.

6402
03:32:34,809 --> 03:32:36,677
THANK YOU VERY MUCH, SUSAN,

6403
03:32:36,677 --> 03:32:38,246
THANK YOU FOR YOUR TIME.

6404
03:32:38,246 --> 03:32:40,681
>> THANK YOU.

6405
03:32:40,681 --> 03:32:42,717
AND WE'RE SO HAPPY TO HEAR ABOUT

6406
03:32:42,717 --> 03:32:43,718
THE IMPORTANT WORK THAT THIS

6407
03:32:43,718 --> 03:32:46,087
SISTER COMMITTEE IS DOING AND DO

6408
03:32:46,087 --> 03:32:47,455
HOPE MEMBERS OF OUR AUDIENCE AND

6409
03:32:47,455 --> 03:32:49,190
COMMITTEE MEMBERS WILL FEEL FREE

6410
03:32:49,190 --> 03:32:51,425
TO TUNE IN FOR THEIR MEETINGS

6411
03:32:51,425 --> 03:32:53,361
ESPECIALLY BETWEEN THE INTERIM

6412
03:32:53,361 --> 03:32:54,795
BETWEEN IACCs, SO NOW YOU KNOW

6413
03:32:54,795 --> 03:32:56,330
WHO TO TALK TO IF YOU HAVE

6414
03:32:56,330 --> 03:32:56,797
QUESTIONS ABOUT THAT.

6415
03:32:56,797 --> 03:32:57,198
THANK YOU.

6416
03:32:57,198 --> 03:33:03,871
AND I'LL TURN IT OVER TO SHELLI.

6417
03:33:03,871 --> 03:33:08,042
>> THANKS, SAW SAN.

6418
03:33:08,042 --> 03:33:08,709
, SUSAN.

6419
03:33:08,709 --> 03:33:10,011
SO I'M HAPPY TO INTRODUCE OUR

6420
03:33:10,011 --> 03:33:13,848
NEXT SPEAKER.

6421
03:33:13,848 --> 03:33:17,685
OUR NEXT SPEAKER IS DR

6422
03:33:17,685 --> 03:33:25,126
DR. CHRISTINA MA

6423
03:33:25,126 --> 03:33:25,726
MARSACK-TOPOLEWSKI, ASSOCIATE

6424
03:33:25,726 --> 03:33:26,293
PROFESSOR OF SOCIAL WORK AT

6425
03:33:26,293 --> 03:33:26,861
EASTERN MICHIGAN UNIVERSITY.

6426
03:33:26,861 --> 03:33:29,397
SHE WILL BE SPEAKING ABOUT HER

6427
03:33:29,397 --> 03:33:30,931
RESEARCH STUDYING CAREGIVER

6428
03:33:30,931 --> 03:33:33,200
BURDEN AMONG FAMILY MEMBERS OF

6429
03:33:33,200 --> 03:33:33,668
AUTISTIC INDIVIDUALS.

6430
03:33:33,668 --> 03:33:35,002
THANKS FOR JOINING US.

6431
03:33:35,002 --> 03:33:37,672
>> THANK YOU SO MUCH.

6432
03:33:37,672 --> 03:33:40,007
IF IT POSSIBLE IF I CAN

6433
03:33:40,007 --> 03:33:42,309
UNMUTE -- OR SHOW MY SCREEN, I

6434
03:33:42,309 --> 03:33:44,045
AM HERE, BUT IT LOOKS LIKE I

6435
03:33:44,045 --> 03:33:45,579
JUST -- THERE'S A TECH -- OH,

6436
03:33:45,579 --> 03:33:45,913
THERE WE GO.

6437
03:33:45,913 --> 03:33:46,781
THANKS SO MUCH.

6438
03:33:46,781 --> 03:33:47,648
WELL, THANKS FOR THE OPPORTUNITY

6439
03:33:47,648 --> 03:33:48,883
TO BE HERE.

6440
03:33:48,883 --> 03:33:54,255
I'M KRISTI MARSACK TOPOLEWSKI.

6441
03:33:54,255 --> 03:33:56,357
MY BACKGROUND IS IN SPECIAL

6442
03:33:56,357 --> 03:33:57,658
EDUCATION, MASTERS IN PH.D. ARE

6443
03:33:57,658 --> 03:33:59,226
BOTH IN SOCIAL WORK, WHERE I

6444
03:33:59,226 --> 03:34:01,062
ALSO -- I STUDY DISABILITY BUT I

6445
03:34:01,062 --> 03:34:03,364
ALSO DID A FOCUS ON AGING, AND

6446
03:34:03,364 --> 03:34:04,565
SO I'VE WORKED IN THE PUBLIC

6447
03:34:04,565 --> 03:34:06,967
SCHOOLS FOR ABOUT 20 YEARS NOW,

6448
03:34:06,967 --> 03:34:08,903
NOW IN A PART-TIME CAPACITY, AND

6449
03:34:08,903 --> 03:34:11,272
I SAY THAT JUST TO GIVE SOME

6450
03:34:11,272 --> 03:34:13,340
CONTEXT TO MY BACKGROUND AND WHY

6451
03:34:13,340 --> 03:34:15,342
I DO THIS WORK, AND AS I WAS

6452
03:34:15,342 --> 03:34:16,544
WORKING IN THE PUBLIC SCHOOLS

6453
03:34:16,544 --> 03:34:18,679
MAINLY WORKING WITH ADOLESCENTS

6454
03:34:18,679 --> 03:34:20,381
TRANSITIONING TO ADULTHOOD,

6455
03:34:20,381 --> 03:34:22,950
WORKING WITH A LOT OF

6456
03:34:22,950 --> 03:34:23,984
INDIVIDUALS WITH VARIOUS

6457
03:34:23,984 --> 03:34:29,356
ABILITIES, INCLUDING AUTISTIC

6458
03:34:29,356 --> 03:34:31,625
ADOLESCENTS, REALLY SEEING KIND

6459
03:34:31,625 --> 03:34:32,326
OF THE DIFFERENT SCENARIOS THEY

6460
03:34:32,326 --> 03:34:33,861
WERE GRAPPLING WITH, AND SO AT

6461
03:34:33,861 --> 03:34:37,331
THAT TIME, I'VE REALLY KIND OF

6462
03:34:37,331 --> 03:34:38,599
FOCUSED AND HAVE SINCE THEN

6463
03:34:38,599 --> 03:34:40,468
FOCUSED ON REALLY KIND OF

6464
03:34:40,468 --> 03:34:44,839
UNDERSTANDING THE EXPERIENCES

6465
03:34:44,839 --> 03:34:47,475
OF -- CAREGIVERS OF AUTISTIC

6466
03:34:47,475 --> 03:34:48,142
INDIVIDUALS AS WELL AS

6467
03:34:48,142 --> 03:34:49,577
POPULATIONS WITH OTHER

6468
03:34:49,577 --> 03:34:50,211
NEURODEVELOPMENTAL DISABILITIES.

6469
03:34:50,211 --> 03:34:51,779
I SAY THAT TO JUST GIVE SOME

6470
03:34:51,779 --> 03:34:52,213
CONTEXT.

6471
03:34:52,213 --> 03:34:53,314
I STILL DO WORK IN THE PUBLIC

6472
03:34:53,314 --> 03:34:54,482
SCHOOLS ALTHOUGH I AM FULL TIME

6473
03:34:54,482 --> 03:34:55,816
AT THE UNIVERSITY, AND THE

6474
03:34:55,816 --> 03:34:58,919
SCHOOL OF SOCIAL WORK, BUT IT'S

6475
03:34:58,919 --> 03:35:00,454
ALLOWED ME TO REALLY STAY REALLY

6476
03:35:00,454 --> 03:35:01,889
GROUNDED INTO SOME OF THE

6477
03:35:01,889 --> 03:35:03,324
DIFFERENT THINGS GOING ON.

6478
03:35:03,324 --> 03:35:05,826
I'LL JUST START WITH KIND OF A

6479
03:35:05,826 --> 03:35:06,393
CAVEAT.

6480
03:35:06,393 --> 03:35:09,330
WE KNOW AND I KNOW THIS HAS BEEN

6481
03:35:09,330 --> 03:35:11,432
ALLUDED THROUGH KIND OF

6482
03:35:11,432 --> 03:35:12,433
THROUGHOUT TODAY'S MEETING,

6483
03:35:12,433 --> 03:35:13,968
WHERE WE KNOW ONE PERSON WITH

6484
03:35:13,968 --> 03:35:15,402
AUTISM, WE KNOW ONE PERSON WITH

6485
03:35:15,402 --> 03:35:15,636
AUTISM.

6486
03:35:15,636 --> 03:35:16,604
SO AUTISM SPECTRUM DISORDER

6487
03:35:16,604 --> 03:35:18,606
REALLY IS A SPECTRUM OR A

6488
03:35:18,606 --> 03:35:20,775
CONTINUUM, AND SO I SAY THAT

6489
03:35:20,775 --> 03:35:22,443
JUST TO GIVE RESPECT CERTAINLY

6490
03:35:22,443 --> 03:35:25,713
TO THE VARIOUS SITUATIONS AND

6491
03:35:25,713 --> 03:35:27,381
THE VARIOUS PERSPECTIVES AND THE

6492
03:35:27,381 --> 03:35:29,116
VARIOUS PEOPLE WHO ARE IMPACTED

6493
03:35:29,116 --> 03:35:31,085
BOTH AS FAMILY CAREGIVERS AND

6494
03:35:31,085 --> 03:35:32,720
BOTH AS AUTISTIC ADULTS WITH

6495
03:35:32,720 --> 03:35:33,921
AUTISM.

6496
03:35:33,921 --> 03:35:35,723
AND THEN SECONDLY, I'LL BE USING

6497
03:35:35,723 --> 03:35:39,326
THE TERM ADULT WITH AUTISM AND

6498
03:35:39,326 --> 03:35:41,295
AUTISTIC ADULTS INTERCHANGEABLY.

6499
03:35:41,295 --> 03:35:43,397
IN MY WORK OVER THE LAST 20

6500
03:35:43,397 --> 03:35:45,566
YEARS, I'VE FOUND THAT PEOPLE

6501
03:35:45,566 --> 03:35:46,333
HAVE DIFFERENT PREFERENCES WITH

6502
03:35:46,333 --> 03:35:48,302
THIS LANGUAGE, SO I JUST WANT TO

6503
03:35:48,302 --> 03:35:49,503
KIND OF SHARE THAT AND GIVE

6504
03:35:49,503 --> 03:35:51,372
VOICE TO THAT AND BE CERTAINLY

6505
03:35:51,372 --> 03:35:53,240
RESPECTFUL TO THE DIFFERENT

6506
03:35:53,240 --> 03:35:54,909
VARIATIONS IN TERMS OF THE

6507
03:35:54,909 --> 03:36:00,247
LANGUAGE THAT'S USED.

6508
03:36:00,247 --> 03:36:01,348
I SHARED A LITTLE BIT ABOUT

6509
03:36:01,348 --> 03:36:02,750
MYSELF.

6510
03:36:02,750 --> 03:36:03,851
MY BIOIS THERE AS WELL.

6511
03:36:03,851 --> 03:36:08,222
BUT IN TERMS OF JUST KIND OF THE

6512
03:36:08,222 --> 03:36:10,457
OVERVIEW, TODAY I'M GOING TO BE

6513
03:36:10,457 --> 03:36:11,759
TALKING ABOUT THREE MAIN THEMES.

6514
03:36:11,759 --> 03:36:13,294
THESE ARE GROUNDED IN THE

6515
03:36:13,294 --> 03:36:14,795
RESEARCH I'VE DONE INDIVIDUALLY

6516
03:36:14,795 --> 03:36:16,330
AS WELL AS COLLECTIVELY WITH

6517
03:36:16,330 --> 03:36:17,798
SOME RETECH TEAMS ACROSS THE

6518
03:36:17,798 --> 03:36:19,300
COUNTRY BUT SHERNLY NATIONAL

6519
03:36:19,300 --> 03:36:20,401
OUTCOMES REALLY THE WORK I'VE

6520
03:36:20,401 --> 03:36:21,502
DONE REALLY FOCUS ON THE

6521
03:36:21,502 --> 03:36:23,270
EXPERIENCES OF FAMILY CAREGIVERS

6522
03:36:23,270 --> 03:36:24,338
OF AUTISTIC ADULTS.

6523
03:36:24,338 --> 03:36:26,207
I'M GOING TO BE TALKING FIRST

6524
03:36:26,207 --> 03:36:28,409
AND FOREMOST ABOUT THE NEED FOR

6525
03:36:28,409 --> 03:36:32,146
TAYLORED ACCESSIBLE SERVICES.

6526
03:36:32,146 --> 03:36:33,247
SECOND, ABOUT SUPPORT WITH

6527
03:36:33,247 --> 03:36:33,781
SERVICE NAVIGATION.

6528
03:36:33,781 --> 03:36:36,083
I WROTE DOWN I THINK IT'S

6529
03:36:36,083 --> 03:36:37,518
MRS. DENA GASSNER REALLY SAID

6530
03:36:37,518 --> 03:36:40,020
THAT SO WELL WHEN SHE

6531
03:36:40,020 --> 03:36:42,423
ARTICULATED JUST SOME OF THE

6532
03:36:42,423 --> 03:36:44,658
CHALLENGES WITH REALLY FAMILIES

6533
03:36:44,658 --> 03:36:54,602
INFORM FAMILIES 1/2 IMAI NAVIGAD

6534
03:36:54,602 --> 03:36:56,237
THE TIME -- AND THAT NEED TO

6535
03:36:56,237 --> 03:36:57,137
PLAN FOR THE FUTURE.

6536
03:36:57,137 --> 03:36:59,139
I KIND OF SMILED WHEN I SAW

6537
03:36:59,139 --> 03:37:00,107
DR. JENNIFER JOHNSON BROUGHT UP

6538
03:37:00,107 --> 03:37:01,308
ADVANCED CARE PLANNING.

6539
03:37:01,308 --> 03:37:04,812
MY COLLEAGUE DR. JACKIE MCGINLEY

6540
03:37:04,812 --> 03:37:06,046
OUT OF NEW YORK AND I HAVE SOME

6541
03:37:06,046 --> 03:37:07,781
WORK PUBLISHED ON ADVANCED CARE

6542
03:37:07,781 --> 03:37:09,817
PLANNING AND LOOKING AT SOME

6543
03:37:09,817 --> 03:37:10,918
DIFFERENT WAYS TO EVEN NESTLE

6544
03:37:10,918 --> 03:37:12,052
THIS WITHIN PERSON-CENTERED

6545
03:37:12,052 --> 03:37:12,319
PLANNING.

6546
03:37:12,319 --> 03:37:15,289
WE KNOW THAT PROFESSIONALS,

6547
03:37:15,289 --> 03:37:18,225
PROVIDERS, FAMILY CAREGIVERS,

6548
03:37:18,225 --> 03:37:21,629
W,ADULTS WITH DISABILITIES ARE

6549
03:37:21,629 --> 03:37:24,064
TAXED, THEY'RE DOING A LOT TO

6550
03:37:24,064 --> 03:37:25,699
EVEN NAVIGATE THE EXISTING

6551
03:37:25,699 --> 03:37:26,800
SERVICE, CONTINUUM OF WHAT'S

6552
03:37:26,800 --> 03:37:32,172
AVAILABLE, SO PUTTING ANYTHING

6553
03:37:32,172 --> 03:37:33,173
ON ANYBODY IS JUST TOO MUCH SO

6554
03:37:33,173 --> 03:37:35,242
REALLY HOW DO WE START TO THINK

6555
03:37:35,242 --> 03:37:37,011
INNOVATIVELY OF HOW DO WE

6556
03:37:37,011 --> 03:37:38,345
DELIVER SERVICES MORE

6557
03:37:38,345 --> 03:37:39,313
EFFICACIOUSLY BUT IN A WAY THAT

6558
03:37:39,313 --> 03:37:41,382
CAN REALLY BE DONE FROM A

6559
03:37:41,382 --> 03:37:43,384
PRAGMATIC STANDPOINT GIVEN THE

6560
03:37:43,384 --> 03:37:45,486
BANDWIDTH AND THE CAPACITY AND

6561
03:37:45,486 --> 03:37:47,121
CERTAINLY THE SHORTAGES WE'RE

6562
03:37:47,121 --> 03:37:50,658
SEEING ACROSS THE COUNTRY, AS IT

6563
03:37:50,658 --> 03:37:52,293
PERTAINS TO BOTH PAID AND UNPAID

6564
03:37:52,293 --> 03:37:55,663
CAREGIVING.

6565
03:37:55,663 --> 03:37:57,197
I JUST WANT TO ALSO MENTION,

6566
03:37:57,197 --> 03:37:58,666
I'LL BE TALKING A LOT ABOUT

6567
03:37:58,666 --> 03:37:59,867
FORMAL SOCIAL SUPPORT NETWORKS.

6568
03:37:59,867 --> 03:38:02,503
A LOT OF MY RESEARCH DOES ALSO

6569
03:38:02,503 --> 03:38:04,438
LOOK AT INFORMAL SOCIAL SUPPORT

6570
03:38:04,438 --> 03:38:05,739
NETWORKS AND WHEN I SAY FORMAL,

6571
03:38:05,739 --> 03:38:08,375
I'M REFERRING TO PAID NETWORKS,

6572
03:38:08,375 --> 03:38:11,679
SO THINGS THAT MIGHT HAVE EITHER

6573
03:38:11,679 --> 03:38:12,913
K-12 FUNDING OR GOVERNMENT

6574
03:38:12,913 --> 03:38:14,114
FUNDING OR FUNDING FROM

6575
03:38:14,114 --> 03:38:17,584
HEALTHCARE PROVIDERS OR PRIVATE

6576
03:38:17,584 --> 03:38:19,586
PAY, INFORMAL SOCIAL SUPPORT

6577
03:38:19,586 --> 03:38:20,888
NETWORKS, IF I DO USE THAT TERM,

6578
03:38:20,888 --> 03:38:22,423
IT WILL SIMPLY REFER TO OUR

6579
03:38:22,423 --> 03:38:23,557
UNPAID NETWORKS.

6580
03:38:23,557 --> 03:38:26,627
SO ANY SUPPORT THAT UP WI ONE MT

6581
03:38:26,627 --> 03:38:29,263
RECEIVE FROM A FAMILY MEMBER, A

6582
03:38:29,263 --> 03:38:32,800
FRIEND, THOSE KIND OF NEIGHBORS

6583
03:38:32,800 --> 03:38:34,168
THROUGHOUT ONE'S COMMUNITY,

6584
03:38:34,168 --> 03:38:34,768
THOSE PIECES.

6585
03:38:34,768 --> 03:38:37,738
SO I JUST WANT TO GIVE VOICE.

6586
03:38:37,738 --> 03:38:40,941
THERE IS A LOT OF SUPPORT

6587
03:38:40,941 --> 03:38:42,609
GROUNDED IN MANY RESEARCHERS'

6588
03:38:42,609 --> 03:38:44,111
WORK AS WELL AS MY OWN ON THE

6589
03:38:44,111 --> 03:38:47,648
VALUE OF INFORMAL SOCIAL SUPPORT

6590
03:38:47,648 --> 03:38:48,549
NETWORKS WHILE THESE ARE

6591
03:38:48,549 --> 03:38:49,850
FAMILIES, FRIENDS, COMMUNITIES,

6592
03:38:49,850 --> 03:38:54,555
I DO THINK OUR PAID NETWORKS CAN

6593
03:38:54,555 --> 03:38:58,525
HAVE A REALLY POWERFUL

6594
03:38:58,525 --> 03:39:00,260
OPPORTUNITY TO HELP FAMILIES

6595
03:39:00,260 --> 03:39:01,795
LEVERAGE INFORMAL SOCIAL SUPPORT

6596
03:39:01,795 --> 03:39:03,630
NETWORKS AND THERE IS A LOT OF

6597
03:39:03,630 --> 03:39:07,201
SUPPORT TO REALLY LOOK AT THE

6598
03:39:07,201 --> 03:39:08,502
EFFICACY BEHIND THAT AS WELL AS

6599
03:39:08,502 --> 03:39:11,138
BENEFITS FOR BOTH AUTISTIC

6600
03:39:11,138 --> 03:39:13,774
ADULTS AS WELL AS FAMILY

6601
03:39:13,774 --> 03:39:14,074
CAREGIVERS.

6602
03:39:14,074 --> 03:39:15,642
IN TERMS OF AUGMENTING QUALITY

6603
03:39:15,642 --> 03:39:17,378
OF LIFE, FAMILY QUALITY OF LIFE

6604
03:39:17,378 --> 03:39:23,417
AND THOSE ASPECTS.

6605
03:39:23,417 --> 03:39:24,752
SO THE FIRST THEME I MENTIONED

6606
03:39:24,752 --> 03:39:26,387
IS THIS NEED FOR TAYLORED

6607
03:39:26,387 --> 03:39:26,920
ACCESSIBLE SERVICES.

6608
03:39:26,920 --> 03:39:28,589
WHAT WE'RE SEEING AND WHAT I'VE

6609
03:39:28,589 --> 03:39:29,456
SEEN FOR THE LAST 20 YEARS

6610
03:39:29,456 --> 03:39:30,991
WORKING IN THE PUBLIC SCHOOLS AS

6611
03:39:30,991 --> 03:39:33,527
WELL NOW IN A PART-TIME CAPACITY

6612
03:39:33,527 --> 03:39:36,397
THROUGH A SPECIAL EDUCATION

6613
03:39:36,397 --> 03:39:38,699
SYSTEM IS THAT THERE'S A

6614
03:39:38,699 --> 03:39:40,334
SERVICES CLIFF AND WE KNOW THIS,

6615
03:39:40,334 --> 03:39:43,404
IT'S BEEN LONG DOCUMENTED.

6616
03:39:43,404 --> 03:39:44,638
WE KNOW WHEN WE START TO LOOK AT

6617
03:39:44,638 --> 03:39:46,907
DISABILITY SERVICES, SERVICES

6618
03:39:46,907 --> 03:39:47,908
TAILORED FOR INDIVIDUALS WITH

6619
03:39:47,908 --> 03:39:49,476
AUTISM, AND ALSO WHEN WE START

6620
03:39:49,476 --> 03:39:50,711
TO THINK ABOUT SERVICES THAT

6621
03:39:50,711 --> 03:39:52,312
MIGHT BE REALLY KIND OF THE

6622
03:39:52,312 --> 03:39:55,582
GO-TO AREAS FOR INDIVIDUALS AS

6623
03:39:55,582 --> 03:39:56,417
THEY AGE ACROSS THE LIFESPAN

6624
03:39:56,417 --> 03:39:58,485
WITH A DISABILITY, SO SOME OF

6625
03:39:58,485 --> 03:40:00,020
THESE PERHAPS BEING AGING

6626
03:40:00,020 --> 03:40:01,922
SERVICES, THERE IS A SERVICE

6627
03:40:01,922 --> 03:40:03,557
CLIFF AND SERVICES REALLY ARE

6628
03:40:03,557 --> 03:40:05,959
NOT TAILORED FOR AUTISTIC

6629
03:40:05,959 --> 03:40:07,594
ADULTS.

6630
03:40:07,594 --> 03:40:09,163
THIS ONE SIZE FITS ALL APPROACH,

6631
03:40:09,163 --> 03:40:11,365
I THINK A LOT OF TIMES WE'RE

6632
03:40:11,365 --> 03:40:13,200
SEEING THIS YOU BE FORTUNATELY,

6633
03:40:13,200 --> 03:40:15,702
AND WE KNOW THAT THE SERVICES

6634
03:40:15,702 --> 03:40:16,937
THAT ARE HENCE BEING DELIVERED

6635
03:40:16,937 --> 03:40:18,939
ARE OFTEN NOT RELEVANT, ARE THE

6636
03:40:18,939 --> 03:40:22,776
SERVICES FAMILIES ARE CALLING

6637
03:40:22,776 --> 03:40:23,911
ABOUT, FAMILIES AND AUTISTIC

6638
03:40:23,911 --> 03:40:25,345
ADULTS ARE OFTENTIMES VERY

6639
03:40:25,345 --> 03:40:26,547
FRUSTRATED ABOUT AS WELL.

6640
03:40:26,547 --> 03:40:29,183
FAMILIES ARE OFTEN TALKING ABOUT

6641
03:40:29,183 --> 03:40:32,352
INAPPROPRIATE GROUPINGS, SO

6642
03:40:32,352 --> 03:40:34,655
PERHAPS THEY'RE ADULTS, CHILD

6643
03:40:34,655 --> 03:40:35,956
WITH AUTISM MIGHT BE ACCESSING

6644
03:40:35,956 --> 03:40:37,491
SERVICES THAT ANOTHER POPULATION

6645
03:40:37,491 --> 03:40:39,626
THAT'S REALLY NOT TOTALLY

6646
03:40:39,626 --> 03:40:40,928
RELEVANT IS ALSO ACCESSING THOSE

6647
03:40:40,928 --> 03:40:44,665
SAME SERVICES AND HENCE

6648
03:40:44,665 --> 03:40:45,933
OFTENTIMES OUR PROVIDERS ARE

6649
03:40:45,933 --> 03:40:47,868
REALLY TAXED WITH TRYING TO

6650
03:40:47,868 --> 03:40:49,303
UNDERSTAND A WHOLE SERIES OF

6651
03:40:49,303 --> 03:40:51,572
DIFFERENT BACKGROUNDS AND

6652
03:40:51,572 --> 03:40:53,941
EXPERIENCES AND DISABILITIES AND

6653
03:40:53,941 --> 03:40:54,675
STRENGTHS AND NEEDS.

6654
03:40:54,675 --> 03:40:56,110
AND THAT'S SOMETIMES NOT

6655
03:40:56,110 --> 03:40:56,977
REALISTIC.

6656
03:40:56,977 --> 03:41:00,914
AND THEN OFTEN THIS MISMATCH

6657
03:41:00,914 --> 03:41:02,216
OCCURS BETWEEN THE CURRENT NEEDS

6658
03:41:02,216 --> 03:41:03,150
AND WHAT SERVICES AND SUPPORTS

6659
03:41:03,150 --> 03:41:03,684
DO EXIST.

6660
03:41:03,684 --> 03:41:05,352
AND SO THAT, WE'RE KIND OF

6661
03:41:05,352 --> 03:41:07,755
CONTINUING TO SEE AND THERE'S

6662
03:41:07,755 --> 03:41:09,623
SOME GREAT RESEARCH OUT IN

6663
03:41:09,623 --> 03:41:10,824
EUROPE AND I'VE INCLUDED THEIR

6664
03:41:10,824 --> 03:41:12,359
NAMES DOWN THERE AND SOME WORK

6665
03:41:12,359 --> 03:41:15,562
THAT WAS PUBLISHED IN 2023 THAT

6666
03:41:15,562 --> 03:41:17,331
REALLY TALK ABOUT THIS MISMATCH

6667
03:41:17,331 --> 03:41:19,066
AND CURRENT NEEDS AND SERVICES.

6668
03:41:19,066 --> 03:41:21,535
WE KNOW THAT JUVENILE SERVICES

6669
03:41:21,535 --> 03:41:22,936
ARE NOT A SOLUTION FOR

6670
03:41:22,936 --> 03:41:23,570
ADULTHOOD.

6671
03:41:23,570 --> 03:41:24,905
OFTENTIMES WE SEE THIS A LOT

6672
03:41:24,905 --> 03:41:26,640
WITH HEALTHCARE, WHERE SOMEBODY

6673
03:41:26,640 --> 03:41:29,343
MIGHT EVEN TRY TO REMAIN WITHIN

6674
03:41:29,343 --> 03:41:31,612
A PEDIATRIC HEALTHCARE KIND OF

6675
03:41:31,612 --> 03:41:36,183
SETTING IF YOU WILL SA, SEEING A

6676
03:41:36,183 --> 03:41:37,384
PEDIATRICIAN LONGER BECAUSE THAT

6677
03:41:37,384 --> 03:41:39,219
PEDIATRICIAN IS WELL VERSED,

6678
03:41:39,219 --> 03:41:41,088
UNDERSTANDS OFTENTIMES, AND I'VE

6679
03:41:41,088 --> 03:41:41,688
WORKED EVEN CLINICALLY WITH

6680
03:41:41,688 --> 03:41:43,290
CLIENTS WHO HAVE SAID I'M A

6681
03:41:43,290 --> 03:41:44,625
DISABLED ADULT, AND PEOPLE

6682
03:41:44,625 --> 03:41:46,627
FORGET THAT EVEN THOUGH MY

6683
03:41:46,627 --> 03:41:48,729
CONDITION IS A JUVENILE-ONSET

6684
03:41:48,729 --> 03:41:50,097
CONDITION, THAT THAT CONDITION

6685
03:41:50,097 --> 03:41:54,968
CAN PURR SATELLITE PERVADE INTO.

6686
03:41:54,968 --> 03:41:56,270
SO THOSE ARE OFTENTIMES THINGS

6687
03:41:56,270 --> 03:41:59,806
THAT PEOPLE ARE IMR GRAPPLING WH

6688
03:41:59,806 --> 03:42:00,874
THAT MAKES THEIR DAILY LIFE

6689
03:42:00,874 --> 03:42:01,975
CHALLENGING AND CERTAINLY TIES

6690
03:42:01,975 --> 03:42:07,014
BACK TO SOME OF THE CHALLENGING

6691
03:42:07,014 --> 03:42:08,515
RELEVANT IN COORDINATED SERVICES

6692
03:42:08,515 --> 03:42:10,250
BUT ALSO WITH JUST PEOPLE EVEN

6693
03:42:10,250 --> 03:42:12,419
UNDERSTANDING THEM THAT WHOLE

6694
03:42:12,419 --> 03:42:13,287
SERVICE NAVIGATION PIECE.

6695
03:42:13,287 --> 03:42:15,289
SO I WANT TO JUST UNDERSCORE

6696
03:42:15,289 --> 03:42:17,090
JUST FOR A BRIEF MINUTE, BECAUSE

6697
03:42:17,090 --> 03:42:18,525
THIS IS SOMETHING THAT CONTINUES

6698
03:42:18,525 --> 03:42:20,460
TO COME UP BOTH IN THE WORK THAT

6699
03:42:20,460 --> 03:42:23,130
I DO FIRSTHAND WITH DISABLED

6700
03:42:23,130 --> 03:42:24,431
POPULATIONS, AND THEIR FAMILY

6701
03:42:24,431 --> 03:42:27,267
CAREGIVERS, BUT ALSO IN THE WORK

6702
03:42:27,267 --> 03:42:29,203
THAT I'VE DONE IN TALKING TO

6703
03:42:29,203 --> 03:42:31,071
FAMILIES ACROSS THE COUNTRY WHO

6704
03:42:31,071 --> 03:42:34,875
HAVE LOVED ONES WITH DIFFERENT

6705
03:42:34,875 --> 03:42:37,344
DISABILITIES INCLUDING ADULTS,

6706
03:42:37,344 --> 03:42:38,879
ADULT CHILDREN WITH AUTISM.

6707
03:42:38,879 --> 03:42:43,116
IT JUST THIS NEED FOR HEALTH

6708
03:42:43,116 --> 03:42:43,784
SERVICES AS WELL AS MENTAL

6709
03:42:43,784 --> 03:42:46,220
HEALTH SERVICES TO REALLY BE

6710
03:42:46,220 --> 03:42:48,188
TAILORED, AND SOMETIMES AT THOSE

6711
03:42:48,188 --> 03:42:49,856
MORE CRITICAL TIMES, WE'RE

6712
03:42:49,856 --> 03:42:50,824
SEEING DIFFERENT TIMES KIND OF

6713
03:42:50,824 --> 03:42:53,227
ACROSS THE LIFE TRAJECTORY WHERE

6714
03:42:53,227 --> 03:42:54,328
CERTAIN HEALTH SERVICES OR

6715
03:42:54,328 --> 03:42:56,997
MENTAL HEALTH SERVICES AND/OR I

6716
03:42:56,997 --> 03:42:59,499
SHOULD SAY REALLY BECOME REALLY

6717
03:42:59,499 --> 03:43:00,968
CRITICAL AND REALLY NEEDED AND

6718
03:43:00,968 --> 03:43:01,301
VERY TIMELY.

6719
03:43:01,301 --> 03:43:03,604
SO I JUST WANTED TO KIND OF MAKE

6720
03:43:03,604 --> 03:43:06,006
A NOD TO THAT BECAUSE IT'S

6721
03:43:06,006 --> 03:43:07,641
REALLY NO DIFFERENT FROM SOME OF

6722
03:43:07,641 --> 03:43:09,409
THE THINGS YOU'RE SEEING OR SOME

6723
03:43:09,409 --> 03:43:10,510
OF THE THINGS THAT FAMILIES ARE

6724
03:43:10,510 --> 03:43:12,946
SHARING THAT THOSE SERVICES ARE

6725
03:43:12,946 --> 03:43:14,381
REALLY CUMBERSOME AND REALLY

6726
03:43:14,381 --> 03:43:14,815
LABORIOUS.

6727
03:43:14,815 --> 03:43:16,016
ONE OF THE THINGS THAT STUCK OUT

6728
03:43:16,016 --> 03:43:18,185
WITH ME, A FEW YEARS BACK I

6729
03:43:18,185 --> 03:43:19,753
SPOKE WITH A WOMAN WHO HAPPENED

6730
03:43:19,753 --> 03:43:22,723
TO BE A PHYSICIAN, VERY WELL

6731
03:43:22,723 --> 03:43:25,425
VERSED WITH MEDICAL SYSTEMS, AND

6732
03:43:25,425 --> 03:43:27,227
SHE SAID AS SHE WAS ADVOCATING

6733
03:43:27,227 --> 03:43:28,562
FOR HER SON TO RECEIVE MENTAL

6734
03:43:28,562 --> 03:43:34,635
HEALTH SERVICES, HER SON, A

6735
03:43:34,635 --> 03:43:36,703
YOUNG ADULT WITH AUTISM, SAID IT

6736
03:43:36,703 --> 03:43:38,672
TACK ME BEING A DOUGH BERMAN

6737
03:43:38,672 --> 03:43:40,407
WITH LIPSTICK TO ADVOCATE FOR

6738
03:43:40,407 --> 03:43:41,875
THE SERVICES MY SON NEEDED.

6739
03:43:41,875 --> 03:43:44,411
THOSE WORDS STILL STICK WITH ME

6740
03:43:44,411 --> 03:43:46,713
AS TO HOW CUMBERSOME, HOW

6741
03:43:46,713 --> 03:43:48,682
LABORIOUS, HOW CHALLENGING, EVEN

6742
03:43:48,682 --> 03:43:54,488
WITH PEOPLE WHO WOULD BE -- YOU

6743
03:43:54,488 --> 03:43:56,923
DON'T LOOK -- LOOK AT THIS

6744
03:43:56,923 --> 03:44:00,093
HIDDEN CURRICULUM, THAT REALLY

6745
03:44:00,093 --> 03:44:02,095
ARE UNCOORDINATED.

6746
03:44:02,095 --> 03:44:04,064
AND I DON'T THINK I NEED TO GO

6747
03:44:04,064 --> 03:44:04,564
ON ABOUT THE WAIT LIST.

6748
03:44:04,564 --> 03:44:06,066
I THINK WE'RE ALL FAMILIAR.

6749
03:44:06,066 --> 03:44:07,934
SO IN SOME OF THE WORK I DID, I

6750
03:44:07,934 --> 03:44:09,703
TOOK SOME DIFFERENT MEDICAL

6751
03:44:09,703 --> 03:44:12,205
FRAMEWORKS AND I COLLAPSED THEM

6752
03:44:12,205 --> 03:44:14,274
AND CREATED BROAD THEMES OF MY

6753
03:44:14,274 --> 03:44:16,943
OWN AS WE START TO THINK ABOUT

6754
03:44:16,943 --> 03:44:18,645
WHAT IT LOOKS TO NAVIGATE

6755
03:44:18,645 --> 03:44:20,847
SERVICES, NOT ONLY HEALTH AND

6756
03:44:20,847 --> 03:44:22,416
MEDICAL, HEALTH MEDICAL/MENTAL

6757
03:44:22,416 --> 03:44:23,684
HEALTH SERVICES, BUT AS WELL AS

6758
03:44:23,684 --> 03:44:27,621
ANY SERVICES FOR AUTISTIC ADULTS

6759
03:44:27,621 --> 03:44:29,056
AND THEIR FAMILY CAREGIVERS.

6760
03:44:29,056 --> 03:44:31,158
SO I TALKED ABOUT THINGS LIKE

6761
03:44:31,158 --> 03:44:32,793
ACCOMMODATION, ACCEPTABLE,

6762
03:44:32,793 --> 03:44:34,227
AVAILABILITY AND AFFORDABILITY.

6763
03:44:34,227 --> 03:44:36,096
I DO HAVE A TABLE THAT'S

6764
03:44:36,096 --> 03:44:38,532
REFERENCED IN ONE OF THE LINKS

6765
03:44:38,532 --> 03:44:40,934
BELOW THAT I PUBLISHED WITH ONE

6766
03:44:40,934 --> 03:44:44,771
OF MY COLLEAGUES, DR. ARLENE

6767
03:44:44,771 --> 03:44:46,707
WEISS, BUT IN ESSENCE, HOW ARE

6768
03:44:46,707 --> 03:44:47,641
THE AVAILABLE OPTIONS ORGANIZED?

6769
03:44:47,641 --> 03:44:48,875
THIS CONTINUES TO BE

6770
03:44:48,875 --> 03:44:49,943
PROBLEMATIC, THIS CONTINUES TO

6771
03:44:49,943 --> 03:44:51,345
BE UNCOORDINATED.

6772
03:44:51,345 --> 03:44:52,746
HOW ACCEPTABLE DO PEOPLE FEEL

6773
03:44:52,746 --> 03:44:53,647
THAT THESE ARE?

6774
03:44:53,647 --> 03:44:54,715
I CONTINUE TO HAVE CONVERSATIONS

6775
03:44:54,715 --> 03:44:57,050
WITH YOUNG ADULTS WITH AUTISM

6776
03:44:57,050 --> 03:45:00,587
WHO OFTEN SAY, HEY, DR. T., I'M

6777
03:45:00,587 --> 03:45:02,322
NEVER GOING TO ACCESS THESE

6778
03:45:02,322 --> 03:45:03,690
SERVICES, THESE ARE NOT RELEVANT

6779
03:45:03,690 --> 03:45:03,890
TO ME.

6780
03:45:03,890 --> 03:45:05,258
AND I APPRECIATE THAT.

6781
03:45:05,258 --> 03:45:06,626
AND SO HOW DO WE START TO THINK

6782
03:45:06,626 --> 03:45:10,230
ABOUT HAVING SERVICES THAT BOTH

6783
03:45:10,230 --> 03:45:11,898
FAMILY CAREGIVERS AND AUTISTIC

6784
03:45:11,898 --> 03:45:13,667
ADULTS DO FIND ACCEPTABLE, AND

6785
03:45:13,667 --> 03:45:14,968
DO FIND SOMETHING WORTHY OF

6786
03:45:14,968 --> 03:45:16,803
THEIR TIME TO EVEN INVEST IN

6787
03:45:16,803 --> 03:45:19,906
TERMS OF A PHONE CALL TO LOOK

6788
03:45:19,906 --> 03:45:20,374
INTO.

6789
03:45:20,374 --> 03:45:22,008
IN TERMS OF AVAILABILITY,

6790
03:45:22,008 --> 03:45:26,413
THERE'S ALL SORTS OF VAIBILITY

6791
03:45:26,413 --> 03:45:27,848
AVAILABILITY ISSUES THAT WE'VE

6792
03:45:27,848 --> 03:45:28,915
PUBLISHED IN SOME OF THE

6793
03:45:28,915 --> 03:45:30,484
ARTICLES THAT MYSELF AND MY

6794
03:45:30,484 --> 03:45:31,485
COLLEAGUES HAVE WRITTEN, BUT

6795
03:45:31,485 --> 03:45:34,354
WAIT LIST, GEOGRAPHIC REACH,

6796
03:45:34,354 --> 03:45:35,422
EVEN ACCESSIBLE IN TERMS OF AS

6797
03:45:35,422 --> 03:45:37,691
WE START TO THINK ABOUT OUR

6798
03:45:37,691 --> 03:45:38,759
FOURTH NAME HERE IS

6799
03:45:38,759 --> 03:45:40,627
AFFORDABILITY.

6800
03:45:40,627 --> 03:45:42,462
OFTENTIMES SOME OF THE SERVICES

6801
03:45:42,462 --> 03:45:44,698
REALLY ARE NOT AFFORDABLE, AND A

6802
03:45:44,698 --> 03:45:47,968
LOT OF THE FAMILIES WHO ARE

6803
03:45:47,968 --> 03:45:49,503
SUPPORTING IN ANY WAY,

6804
03:45:49,503 --> 03:45:50,604
PRAGMATICALLY, TANGENTIALLY,

6805
03:45:50,604 --> 03:45:54,574
FINANCIALLY, IN ANY WAY, AS

6806
03:45:54,574 --> 03:45:56,343
LOVED ONES AND AUTISTIC ADULTS

6807
03:45:56,343 --> 03:45:57,978
HAVE REALLY INVESTED A LOT OF

6808
03:45:57,978 --> 03:46:00,113
TIME AND MONEY AND ENERGY AND SO

6809
03:46:00,113 --> 03:46:03,050
THERE'S ONLY SO MUCH IN TERMS OF

6810
03:46:03,050 --> 03:46:05,252
FINANCES THAT WE CAN BE -- THAT

6811
03:46:05,252 --> 03:46:06,353
CAN BE OFFERED.

6812
03:46:06,353 --> 03:46:10,924
ALL RIGHT.

6813
03:46:10,924 --> 03:46:12,426
SO I JUST ALSO WANT TO MENTION

6814
03:46:12,426 --> 03:46:14,327
THIS BIDIRECTIONAL RELATIONSHIP.

6815
03:46:14,327 --> 03:46:15,996
ANYTHING WE CAN DO TO SUPPORT A

6816
03:46:15,996 --> 03:46:16,863
FAMILY CAREGIVER.

6817
03:46:16,863 --> 03:46:19,266
I HOPE AND BELIEVE THAT IN MANY

6818
03:46:19,266 --> 03:46:21,334
WAYS WE'RE GOING TO SEE THE

6819
03:46:21,334 --> 03:46:24,037
FRUITS AND THE BENEFITS FOR

6820
03:46:24,037 --> 03:46:26,306
OTHER FAMILY MEMBERS INCLUDING

6821
03:46:26,306 --> 03:46:27,407
AUTISTIC ADULTS.

6822
03:46:27,407 --> 03:46:29,276
AND ANYTHING WE CAN DO TO

6823
03:46:29,276 --> 03:46:32,078
SUPPORT ADULTS WITH AUTISM,

6824
03:46:32,078 --> 03:46:33,613
FAMILY CAREGIVERS ARE OFTENTIMES

6825
03:46:33,613 --> 03:46:37,317
MUCH MORE SUPPORTED AND THERE'S

6826
03:46:37,317 --> 03:46:40,353
A BETTER BALANCING OF NEEDS.

6827
03:46:40,353 --> 03:46:41,021
THE SECOND THEME JUST AS WE

6828
03:46:41,021 --> 03:46:43,023
START TO THINK ABOUT SUPPORT

6829
03:46:43,023 --> 03:46:45,125
WITH NAVIGATION, I'M GOING TO

6830
03:46:45,125 --> 03:46:49,362
TALK BRIEFLY, I'M A BIG FAP OF

6831
03:46:49,362 --> 03:46:50,997
FAMILY SUPPORT NAVIGATOR

6832
03:46:50,997 --> 03:46:51,965
PROGRAMS WHEN THEY'RE DONE

6833
03:46:51,965 --> 03:46:52,632
RIGHT, WHEN PEOPLE HAVE THE

6834
03:46:52,632 --> 03:46:53,967
RIGHT TRAINING, WHEN THEY'RE

6835
03:46:53,967 --> 03:46:54,868
ACCESSIBLE AND WHEN THEY'RE

6836
03:46:54,868 --> 03:46:55,936
REALLY TAILORED TO THE NEEDS OF

6837
03:46:55,936 --> 03:46:57,270
THAT INDIVIDUAL.

6838
03:46:57,270 --> 03:46:58,772
MY COLLEAGUES AND I RECEIVED A

6839
03:46:58,772 --> 03:47:00,607
GRANT AND WE HAD A TWO-YEAR

6840
03:47:00,607 --> 03:47:02,809
PROGRAM AND WE CREATED A FAMILY

6841
03:47:02,809 --> 03:47:04,444
SUPPORT NAVIGATOR MODEL HERE IN

6842
03:47:04,444 --> 03:47:05,378
THE STATE OF MICHIGAN, WHICH IS

6843
03:47:05,378 --> 03:47:08,215
THE STATE I RESIDE, AND THIS WAS

6844
03:47:08,215 --> 03:47:10,984
DONE DURING COVID, SO THERE'S

6845
03:47:10,984 --> 03:47:12,319
THAT, WE CAN SAY IN TERMS OF

6846
03:47:12,319 --> 03:47:13,286
JUST SOME NEW THINGS THAT MIGHT

6847
03:47:13,286 --> 03:47:15,822
HAVE POPPED UP AND SOME NEW

6848
03:47:15,822 --> 03:47:19,025
SERVICES AND SUPPORTS AND KIND

6849
03:47:19,025 --> 03:47:20,560
OF INNER WORKINGS THAT MIGHT

6850
03:47:20,560 --> 03:47:22,295
NEED TO BE WORKED THROUGH DUE TO

6851
03:47:22,295 --> 03:47:24,798
KIND OF THE TIME, IF YOU WILL.

6852
03:47:24,798 --> 03:47:26,566
BUT WE KNOW THAT NAVIGATING

6853
03:47:26,566 --> 03:47:28,301
SERVICES IS PROBLEMATIC, IT'S

6854
03:47:28,301 --> 03:47:31,938
VERY TIME-CONSUMING.

6855
03:47:31,938 --> 03:47:35,542
THERE'S A LOT OF DERCH SERVICE T

6856
03:47:35,542 --> 03:47:36,209
SERVICE AREAS.

6857
03:47:36,209 --> 03:47:39,880
A LOT OF THE WORK THAT I DO, I

6858
03:47:39,880 --> 03:47:41,114
REFER TO IT AT BOUTIQUE

6859
03:47:41,114 --> 03:47:41,515
SHOPPING.

6860
03:47:41,515 --> 03:47:43,149
ALL THE EUROPEANS OFTEN KNOW

6861
03:47:43,149 --> 03:47:44,618
WHAT A BOUTIQUE IS, THEY LOVE

6862
03:47:44,618 --> 03:47:45,719
BOUTIQUES, THEY HAVE THE BEST

6863
03:47:45,719 --> 03:47:47,954
BOUTIQUE THERE, SO I'VE STARTED

6864
03:47:47,954 --> 03:47:49,723
EU R USING THIS TERM AS THAT WE

6865
03:47:49,723 --> 03:47:50,924
ARE UNFORTUNATELY IN THIS

6866
03:47:50,924 --> 03:47:54,661
COUNTRY REALLY FORCING OUR

6867
03:47:54,661 --> 03:47:55,328
FAMILY CAREGIVERS AND OUR

6868
03:47:55,328 --> 03:47:58,198
DISABLED POPULATIONS TO BOUTIQUE

6869
03:47:58,198 --> 03:47:58,732
SHOP.

6870
03:47:58,732 --> 03:47:59,833
WE HAVE TO GO HERE FOR HEALTH,

6871
03:47:59,833 --> 03:48:01,167
WE HAVE TO GO HERE FOR MENTAL

6872
03:48:01,167 --> 03:48:02,702
HEALTH, WE HAVE TO GO TO ANOTHER

6873
03:48:02,702 --> 03:48:05,105
PLACE FOR ANY FORM OF EMPLOYMENT

6874
03:48:05,105 --> 03:48:06,673
SUPPORTS, THEN THE HOUSING

6875
03:48:06,673 --> 03:48:06,940
SUPPORTS.

6876
03:48:06,940 --> 03:48:07,607
BY THE TIME YOU GET THERE,

6877
03:48:07,607 --> 03:48:09,543
YOU'RE JUST SO TIRED.

6878
03:48:09,543 --> 03:48:11,678
SO THIS CONCEPT OF BOUTIQUE

6879
03:48:11,678 --> 03:48:13,747
SHOPPING, ANYTHING WE CAN DO TO

6880
03:48:13,747 --> 03:48:14,514
MITIGATE THE OPPORTUNITY THAT

6881
03:48:14,514 --> 03:48:16,917
THIS WOULD BE A REALITY FOR

6882
03:48:16,917 --> 03:48:20,987
FAMILY CAREGIVERS AND AUTISTIC

6883
03:48:20,987 --> 03:48:22,222
ADULTS WOULD BE REALLY,

6884
03:48:22,222 --> 03:48:24,291
REALLY -- REALLY -- REALLY,

6885
03:48:24,291 --> 03:48:25,191
REALLY HELPFUL.

6886
03:48:25,191 --> 03:48:28,094
AND THEN FINALLY, JUST THIS

6887
03:48:28,094 --> 03:48:30,163
THOUGHT OF WHENEVER POSSIBLE,

6888
03:48:30,163 --> 03:48:31,798
AND TO WHATEVER EXTENT IT

6889
03:48:31,798 --> 03:48:33,833
ACTUALLY MAKES SENSE AND CAN BE

6890
03:48:33,833 --> 03:48:35,235
EFFECTIVE, IS JUST LOOKING HOW

6891
03:48:35,235 --> 03:48:41,908
DO WE OFFER COORDINATED SYSTEMS

6892
03:48:41,908 --> 03:48:43,009
AND COORDINATED SERVICES SO

6893
03:48:43,009 --> 03:48:44,044
SOMEBODY DOESN'T HAVE TO GO TO

6894
03:48:44,044 --> 03:48:45,779
ALL OF THESE OTHER PLACES.

6895
03:48:45,779 --> 03:48:47,047
SO I HAVE JUST A LITTLE BIT OF

6896
03:48:47,047 --> 03:48:48,715
INFORMATION HERE ABOUT THE

6897
03:48:48,715 --> 03:48:52,886
FAMILY SUPPORT NAVIGATION

6898
03:48:52,886 --> 03:48:55,422
PROGRAM WHERE WE HAD PEERS, SO

6899
03:48:55,422 --> 03:48:57,390
FAMILY CAREGIVERS WHO HAD

6900
03:48:57,390 --> 03:49:01,061
DISABLED ADULT CHILDREN WHO WERE

6901
03:49:01,061 --> 03:49:01,828
FAMILIAR GEOGRAPHICALLY, AND I

6902
03:49:01,828 --> 03:49:03,229
THINK THAT WAS A BIG KEY, AND

6903
03:49:03,229 --> 03:49:04,331
THOSE CAREGIVERS WERE TRAINED

6904
03:49:04,331 --> 03:49:06,700
NOT ONLY ON SERVICES FOR DIGS

6905
03:49:06,700 --> 03:49:08,768
ABLED POPULATIONS BUT ALSO THE

6906
03:49:08,768 --> 03:49:10,437
AGING SERVICES, BECAUSE

6907
03:49:10,437 --> 03:49:12,172
OFTENTIMES AS WE MOVE KIND OF

6908
03:49:12,172 --> 03:49:13,206
ACROSS THE LIFESPAN, SOME OF

6909
03:49:13,206 --> 03:49:16,076
THESE OTHER SERVICES WILL BECOME

6910
03:49:16,076 --> 03:49:19,012
VERY RELEVANT, SO AS WE START TO

6911
03:49:19,012 --> 03:49:21,181
THINK ABOUT OUR EYE ON THE

6912
03:49:21,181 --> 03:49:22,182
FUTURE REALLY KIND OF THINKING

6913
03:49:22,182 --> 03:49:24,985
ABOUT HOW DO WE START TO ADVANCE

6914
03:49:24,985 --> 03:49:26,786
BOTH OUR SERVICES FOR

6915
03:49:26,786 --> 03:49:28,755
POPULATIONS WITH IDDs, OR

6916
03:49:28,755 --> 03:49:30,090
INTELLECTUAL AND DEVELOPMENTAL

6917
03:49:30,090 --> 03:49:33,526
DISABILITIES, BUT ALSO FOR THOSE

6918
03:49:33,526 --> 03:49:34,227
WHO ARE AGING AND HOW DO WE

6919
03:49:34,227 --> 03:49:35,729
START TO ALMOST CROSS TRAIN

6920
03:49:35,729 --> 03:49:36,930
THOSE PROFESSIONALS AND

6921
03:49:36,930 --> 03:49:38,498
PROVIDERS SO THEY'RE REALLY

6922
03:49:38,498 --> 03:49:39,766
AWARE WHEN NECESSARY OF THE TWO

6923
03:49:39,766 --> 03:49:41,401
AREAS.

6924
03:49:41,401 --> 03:49:44,004
ONE OF MY FAVORITE RESEARCHERS

6925
03:49:44,004 --> 03:49:48,908
IS DR. TAMARA HELLERIN, IF

6926
03:49:48,908 --> 03:49:50,410
YOU'VE EVER HEARD HER SPEAK,

6927
03:49:50,410 --> 03:49:53,480
SHE'S OUT OF CHICAGO, BUT HOW WE

6928
03:49:53,480 --> 03:49:57,517
OFTEN SEE AGING AS NOT RELEVANT

6929
03:49:57,517 --> 03:49:59,152
TO PEOPLE WITH LIFELONG

6930
03:49:59,152 --> 03:50:00,453
DISABILITY, AND I THINK THAT'S A

6931
03:50:00,453 --> 03:50:01,721
REAL ISSUE AS WE START TO THINK

6932
03:50:01,721 --> 03:50:05,625
ABOUT OUR SERVICES AND WE START

6933
03:50:05,625 --> 03:50:08,361
TO THINK ABOUT WHAT'S EVEN

6934
03:50:08,361 --> 03:50:10,730
OFFERED IN AREA AGENCIES AND

6935
03:50:10,730 --> 03:50:11,631
AGING ON THINGS LIKE THIS.

6936
03:50:11,631 --> 03:50:13,366
SO I WANT TO MAKE A NOD TO THAT

6937
03:50:13,366 --> 03:50:15,135
AS WELL THAT THAT CAN BE REALLY

6938
03:50:15,135 --> 03:50:15,669
IMPORTANT AND EFFECTIVE.

6939
03:50:15,669 --> 03:50:16,703
THE OTHER THING JUST AS WE START

6940
03:50:16,703 --> 03:50:18,672
TO THINK ABOUT PEER NAVIGATION

6941
03:50:18,672 --> 03:50:21,341
SUPPORTS, MANY OF OUR FAMILY

6942
03:50:21,341 --> 03:50:23,643
CAREGIVERS ARE NOT SOLELY CARING

6943
03:50:23,643 --> 03:50:24,511
FOR ONE LOVED ONE.

6944
03:50:24,511 --> 03:50:27,747
SO AS THEIR CHILDREN AGE INTO

6945
03:50:27,747 --> 03:50:28,548
ADULTHOOD, EMERGING ADULTHOOD,

6946
03:50:28,548 --> 03:50:31,017
WHATEVER WE WANT TO CALL IT,

6947
03:50:31,017 --> 03:50:32,986
THOSE INDIVIDUALS, THOSE FAMILY

6948
03:50:32,986 --> 03:50:35,221
CAREGIVERS MAY ASSUME OTHER

6949
03:50:35,221 --> 03:50:37,190
CAREGIVING ROLES, SO I HAVE A

6950
03:50:37,190 --> 03:50:38,625
TRAJECTORY OF RESEARCH THAT'S

6951
03:50:38,625 --> 03:50:40,927
PUB RISHED ON COMPOUND

6952
03:50:40,927 --> 03:50:41,728
CAREGIVING.

6953
03:50:41,728 --> 03:50:42,429
I WANT TO MENTION BECAUSE MANY

6954
03:50:42,429 --> 03:50:45,131
OF OUR CAREGIVERS ARE JUGGLING

6955
03:50:45,131 --> 03:50:46,466
THE PROVISION OF CARE FOR

6956
03:50:46,466 --> 03:50:47,834
MULTIPLE LOVED ONES, AND THOSE

6957
03:50:47,834 --> 03:50:49,803
MULTIPLE LOVED ONES WILL

6958
03:50:49,803 --> 03:50:50,804
OFTENTIMES HAVE VERY DIFFERENT

6959
03:50:50,804 --> 03:50:52,105
NEEDS, SO I THINK THAT REALLY

6960
03:50:52,105 --> 03:50:54,641
SHOULD OFTEN BE GIVEN VOICE AS

6961
03:50:54,641 --> 03:50:56,509
WE START TO THINK ABOUT AND

6962
03:50:56,509 --> 03:50:58,111
CONTEXTUALIZE THE EXPERIENCES OF

6963
03:50:58,111 --> 03:50:59,079
FAMILY CAREGIVERS OF AUTISTIC

6964
03:50:59,079 --> 03:50:59,646
ADULTS.

6965
03:50:59,646 --> 03:51:01,514
AND FINALLY, OUR THIRD THEME,

6966
03:51:01,514 --> 03:51:04,617
JUST THIS NEED TO LOOK TO THE

6967
03:51:04,617 --> 03:51:05,485
FUTURE.

6968
03:51:05,485 --> 03:51:06,920
AS WE START TO LOOK EVEN AT

6969
03:51:06,920 --> 03:51:07,887
WHERE THE FUNDING IS ALLOCATED

6970
03:51:07,887 --> 03:51:09,622
AS WE START TO THINKING ACROSS

6971
03:51:09,622 --> 03:51:10,390
THE LIFESPAN FOR INDIVIDUALS,

6972
03:51:10,390 --> 03:51:12,692
YOU KNOW, FAMILY CAREGIVERS AS

6973
03:51:12,692 --> 03:51:15,095
WELL AS AUTISTIC ADULTS, I THINK

6974
03:51:15,095 --> 03:51:16,863
WE NEED TO KIND OF PUSH THE

6975
03:51:16,863 --> 03:51:17,764
NEEDLE A LITTLE BIT.

6976
03:51:17,764 --> 03:51:18,965
WE NEED TO CONTINUE TO DO THIS

6977
03:51:18,965 --> 03:51:20,200
AND LOOK TO THE FUTURE.

6978
03:51:20,200 --> 03:51:21,501
I LOVED WHEN DR. JENNIFER

6979
03:51:21,501 --> 03:51:23,303
JOHNSON MENTIONED ADVANCED CARE

6980
03:51:23,303 --> 03:51:24,170
PLANNING BECAUSE I THINK THAT

6981
03:51:24,170 --> 03:51:26,206
THERE'S A LOT OF OPPORTUNITY

6982
03:51:26,206 --> 03:51:28,141
WITHIN ADVANCED CARE PLANNING.

6983
03:51:28,141 --> 03:51:30,677
AS I MENTIONED MY COLLEAGUE

6984
03:51:30,677 --> 03:51:34,114
DR. JACKIE MAGINLEY AND I DID A

6985
03:51:34,114 --> 03:51:35,648
NATIONAL OVERVIEW KIND OF

6986
03:51:35,648 --> 03:51:36,983
LOOKING AT WHAT'S GOING ON

6987
03:51:36,983 --> 03:51:39,018
ACROSS THE COUNTRY BY STATE,

6988
03:51:39,018 --> 03:51:41,721
LOOKING AT M POLICY ANALYSIS OF

6989
03:51:41,721 --> 03:51:42,489
PERSON-CENTERED PLANS AND

6990
03:51:42,489 --> 03:51:44,424
LACKING TO SEE IF THOSE PLANS

6991
03:51:44,424 --> 03:51:48,228
ARE EMBODYING THE ELEMENTS AND

6992
03:51:48,228 --> 03:51:48,895
DIMENSIONS OF ADVANCED CARE

6993
03:51:48,895 --> 03:51:49,929
PLANNING.

6994
03:51:49,929 --> 03:51:51,364
WE'RE SEEING IT KIND OF SPARSELY

6995
03:51:51,364 --> 03:51:52,265
DONE IN DIFFERENT -- DONE IN

6996
03:51:52,265 --> 03:51:53,466
DIFFERENT WAYS KIND OF ACROSS

6997
03:51:53,466 --> 03:51:56,136
THE COUNTRY, AND ONE OF THE

6998
03:51:56,136 --> 03:51:56,903
RECOMMENDATIONS FROM SOME OF

6999
03:51:56,903 --> 03:52:01,274
THOSE PUBLISHED PIECES IS SIMPLY

7000
03:52:01,274 --> 03:52:06,012
MANY AUTISTIC ADULTS WILL HAVE

7001
03:52:06,012 --> 03:52:06,713
PERSON-CENTERED PLAN, NOT ALL,

7002
03:52:06,713 --> 03:52:11,084
BUT FOR THOSE WHO ARE RECEIVING

7003
03:52:11,084 --> 03:52:11,718
MEDICAID, THIS IS A REQUIREMENT

7004
03:52:11,718 --> 03:52:13,119
AND THERE'S A REQUIREMENT THAT

7005
03:52:13,119 --> 03:52:15,755
THOSE PERSON-CENTERED PLANS BE

7006
03:52:15,755 --> 03:52:17,724
REVISITED AND A SPECIFIC

7007
03:52:17,724 --> 03:52:19,125
DESIGNATED TIME PERIOD.

7008
03:52:19,125 --> 03:52:20,393
AND HENCE, WE COULD BE LOOKING

7009
03:52:20,393 --> 03:52:22,495
AT ADVANCED CARE PLANNING IN

7010
03:52:22,495 --> 03:52:23,563
VERY RESPECTFUL WAYS AND IT

7011
03:52:23,563 --> 03:52:26,065
COULD BE EMBODIED WITHIN THE

7012
03:52:26,065 --> 03:52:28,768
PERSON-CENTERED PLANNING.

7013
03:52:28,768 --> 03:52:29,969
SO AS WE START TO THINK BACK TO

7014
03:52:29,969 --> 03:52:31,471
THE SAME THREE, THIS NEED TO

7015
03:52:31,471 --> 03:52:34,541
PLAN FOR THE FUTURE, THIS IS FOR

7016
03:52:34,541 --> 03:52:36,176
BOTH FAMILY CAREGIVERS AND

7017
03:52:36,176 --> 03:52:38,044
AUTISTIC ADULTS.

7018
03:52:38,044 --> 03:52:39,412
AND I THINK SOMETIMES WHEN

7019
03:52:39,412 --> 03:52:41,047
FAMILIES FEEL THAT THEY HAVE A

7020
03:52:41,047 --> 03:52:42,816
BETTER PLAN, I KNOW FOR MYSELF,

7021
03:52:42,816 --> 03:52:44,284
PROBABLY FOR ALL THE PEOPLE THAT

7022
03:52:44,284 --> 03:52:47,587
I KNOW, WHEN WE HAVE BETTER

7023
03:52:47,587 --> 03:52:49,556
PLANS, THINGS JUST GO SMOOTHLY

7024
03:52:49,556 --> 03:52:52,225
EVEN IF THEY GO A LITTLE BIT OFF

7025
03:52:52,225 --> 03:52:53,459
THE PLAN.

7026
03:52:53,459 --> 03:52:55,195
SO OUR FAMILIES WILL AND DO HAVE

7027
03:52:55,195 --> 03:52:57,230
CHANGING AND EVOLVING NEEDS, AND

7028
03:52:57,230 --> 03:52:59,432
THOSE NEEDS WILL CHANGE FOR BOTH

7029
03:52:59,432 --> 03:53:02,602
THE FAMILY CAREGIVER AS WELL AS

7030
03:53:02,602 --> 03:53:03,136
ADULTS WITH AUTISM.

7031
03:53:03,136 --> 03:53:05,071
SO I THINK WE REALLY NEED TO

7032
03:53:05,071 --> 03:53:06,272
HAVE A PULSE ON THAT TO NOT ONLY

7033
03:53:06,272 --> 03:53:07,373
BE THINKING ABOUT THE HERE AND

7034
03:53:07,373 --> 03:53:11,044
NOW BUT ALSO PROACTIVELY LOOKING

7035
03:53:11,044 --> 03:53:14,080
TOWARDS THE FUTURE WITH WHAT CAN

7036
03:53:14,080 --> 03:53:15,281
WE DO IN TERMS OF OUR PLANNING

7037
03:53:15,281 --> 03:53:16,616
FOR THOSE THAT WILL REQUIRE SOME

7038
03:53:16,616 --> 03:53:18,351
FORM, AND SAY SOME FORM BECAUSE

7039
03:53:18,351 --> 03:53:19,552
IT CAN LOOK VERY, VERY DIFFERENT

7040
03:53:19,552 --> 03:53:22,055
BUT SOME FORM OF CAREGIVING

7041
03:53:22,055 --> 03:53:23,656
SUPPORT, BEING ABLE TO OFFER

7042
03:53:23,656 --> 03:53:23,990
THAT AS WELL.

7043
03:53:23,990 --> 03:53:25,525
SO I'M GOING TO WRAP UP HERE.

7044
03:53:25,525 --> 03:53:29,028
I DO HAVE SOME THEMES HERE FROM

7045
03:53:29,028 --> 03:53:37,403
AN ARTICLE THAT MY COLLEAGUE DRI

7046
03:53:37,403 --> 03:53:38,605
PUBLISHED ON THE NEED FOR

7047
03:53:38,605 --> 03:53:40,306
SUPPORT AND SOME OF THE BARRIERS

7048
03:53:40,306 --> 03:53:40,940
FAMILIES ARE EXPERIENCING THAT

7049
03:53:40,940 --> 03:53:47,080
WOULD REALLY MAKE IT DIFFICULT

7050
03:53:47,080 --> 03:53:48,314
TO MOVE FORWARD IN FUTURE

7051
03:53:48,314 --> 03:53:48,615
PLANNING.

7052
03:53:48,615 --> 03:53:50,350
SO IN TERMS OF JUST PROFESSIONAL

7053
03:53:50,350 --> 03:53:51,751
IMPLICATIONS AND THEN I'LL TALK

7054
03:53:51,751 --> 03:53:53,186
VERY BRIEFLY ABOUT POLICY

7055
03:53:53,186 --> 03:53:54,654
IMPLICATIONS, BUT CAREGIVING

7056
03:53:54,654 --> 03:53:56,956
CERTAINLY CAN VARY IN LENGTH,

7057
03:53:56,956 --> 03:53:58,057
DURATION, INTENSITY, BUT THERE'S

7058
03:53:58,057 --> 03:53:59,025
CERTAINLY A NEED TO CONTINUE TO

7059
03:53:59,025 --> 03:54:00,360
THINK ABOUT HOW DO WE SUPPORT

7060
03:54:00,360 --> 03:54:03,596
THE PRACTICAL NEEDS OF LIFE, AND

7061
03:54:03,596 --> 03:54:04,664
CERTAINLY THE SERVICE NAVIGATION

7062
03:54:04,664 --> 03:54:07,567
PIECE IS PART OF THAT.

7063
03:54:07,567 --> 03:54:09,335
WHEN WE START TO THINK ABOUT THE

7064
03:54:09,335 --> 03:54:10,970
PRAGMATICS, AND THEN JUST

7065
03:54:10,970 --> 03:54:13,106
CONTINUING TO RECOGNIZE THE

7066
03:54:13,106 --> 03:54:15,475
NEEDS AND THE ABILITY FOR

7067
03:54:15,475 --> 03:54:16,743
CAREGIVERS TO BE ABLE TO BALANCE

7068
03:54:16,743 --> 03:54:18,278
THEIR OWN NEEDS AS WELL AS THE

7069
03:54:18,278 --> 03:54:20,546
NEEDS OF THEIR LOVED ONES AND

7070
03:54:20,546 --> 03:54:26,019
THEIR OWN FAMILY CONTEXT.

7071
03:54:26,019 --> 03:54:27,887
SO OUR PROGRAM, SERVICES SUPPORT

7072
03:54:27,887 --> 03:54:29,188
AND POLICIES REALLY SHOULD AIM

7073
03:54:29,188 --> 03:54:31,424
TO DEVELOP SYSTEMS, STRUCTURES,

7074
03:54:31,424 --> 03:54:33,726
PATHWAYS THAT MAKE MORE

7075
03:54:33,726 --> 03:54:35,795
ACCESSIBLE INCLUSIVE AND

7076
03:54:35,795 --> 03:54:37,230
EQUITABLE OPPORTUNITIES FOR BOTH

7077
03:54:37,230 --> 03:54:38,831
AUTISTIC ADULTS AND THEIR FAMILY

7078
03:54:38,831 --> 03:54:40,466
CAREGIVERS.

7079
03:54:40,466 --> 03:54:42,869
AND SO JUST AS A RECAP, I'VE

7080
03:54:42,869 --> 03:54:43,970
INCLUDED THOSE THREE THEMES THAT

7081
03:54:43,970 --> 03:54:46,105
I TALKED ABOUT BUT FIRST THAT

7082
03:54:46,105 --> 03:54:47,974
NEED FOR TAYLORED ACCESSIBLE

7083
03:54:47,974 --> 03:54:49,175
SERVICES, SO IF WE GO BACK TO

7084
03:54:49,175 --> 03:54:52,879
THAT COORDINATION OF SERVICES,

7085
03:54:52,879 --> 03:54:54,380
WE DON'T WANT PEOPLE TO BE

7086
03:54:54,380 --> 03:54:55,481
BOUTIQUE SHOPPING, IF YOU WILL,

7087
03:54:55,481 --> 03:54:56,916
AND HAVING TO DO THAT AND THAT

7088
03:54:56,916 --> 03:54:59,052
GETS HARD AND LABORIOUS AND WE

7089
03:54:59,052 --> 03:55:00,386
CAN GO INTO KIND OF A NIGHTMARE

7090
03:55:00,386 --> 03:55:06,726
OF THAT.

7091
03:55:06,726 --> 03:55:09,829
TWO, SUPPORT FOR FORMALIZED

7092
03:55:09,829 --> 03:55:10,263
SERVICE NAVIGATION.

7093
03:55:10,263 --> 03:55:10,964
AND THREE, THIS NEED TO LOOK

7094
03:55:10,964 --> 03:55:12,598
FORWARD THE FUTURE AND PLAN FOR

7095
03:55:12,598 --> 03:55:14,300
THE FUTURE AS OUR FAMILY

7096
03:55:14,300 --> 03:55:15,501
CAREGIVERS, THEIR NEEDS WILL

7097
03:55:15,501 --> 03:55:18,237
CHANGE, AND THEIR LOVED ONES'

7098
03:55:18,237 --> 03:55:19,572
NEEDS WILL CHANGE AS WELL.

7099
03:55:19,572 --> 03:55:23,876
SO CERTAINLY FUNDING NEEDS

7100
03:55:23,876 --> 03:55:24,744
PROGRAMMATIC STRUCTURE AND

7101
03:55:24,744 --> 03:55:25,712
SERVICE NEEDS AND REALLY THIS

7102
03:55:25,712 --> 03:55:27,280
PIPELINE OF PROVIDERS AND

7103
03:55:27,280 --> 03:55:28,448
TRAINING NEEDS ALSO COMES INTO

7104
03:55:28,448 --> 03:55:31,718
PLAY.

7105
03:55:31,718 --> 03:55:32,685
I JUST WANT TO THANK YOU FOR THE

7106
03:55:32,685 --> 03:55:33,353
OPPORTUNITY TO BE HERE.

7107
03:55:33,353 --> 03:55:35,688
I HAVE SOME INFORMATION ABOUT

7108
03:55:35,688 --> 03:55:36,289
MYSELF IF THAT'S EVER OF HELP

7109
03:55:36,289 --> 03:55:37,690
AND MY REFERENCE IS AT THE BACK,

7110
03:55:37,690 --> 03:55:38,458
BUT THANK YOU FOR THAT

7111
03:55:38,458 --> 03:55:42,195
OPPORTUNITY TO BE HERE.

7112
03:55:42,195 --> 03:55:46,833
>> THANK YOU SO MUCH, DR.
M

7113
03:55:46,833 --> 03:55:47,133
DR. MARSACK.

7114
03:55:47,133 --> 03:55:48,201
WE DO HAVE MATERIALS FOR EACH OF

7115
03:55:48,201 --> 03:55:50,536
THE SPEE ONLINE ON OUR WEBSITE,

7116
03:55:50,536 --> 03:55:52,038
IN CASE ANYONE WANTS TO CHECK

7117
03:55:52,038 --> 03:55:52,839
THOSE OUT.

7118
03:55:52,839 --> 03:55:55,008
AND NEXT I'LL INTRODUCE OUR NEXT

7119
03:55:55,008 --> 03:55:56,843
SPEAKER, DR. ELIZABETH MORGAN,

7120
03:55:56,843 --> 03:55:57,477
WHO'S GOING TO BE TALKING ABOUT

7121
03:55:57,477 --> 03:55:59,379
HER WORK WITH AFRICAN AMERICAN

7122
03:55:59,379 --> 03:56:01,314
FAMILY CAREGIVERS, AND SHE'S

7123
03:56:01,314 --> 03:56:03,516
CURRENTLY IN THE COLLEGE OF

7124
03:56:03,516 --> 03:56:04,117
EDUCATION AT CALIFORNIA STATE

7125
03:56:04,117 --> 03:56:05,818
UNIVERSITY IN SACRAMENTO, AND

7126
03:56:05,818 --> 03:56:07,253
SHE WILL BE SOON TRANSITIONING

7127
03:56:07,253 --> 03:56:10,189
TO A NEW POSITION AS ASSOCIATE

7128
03:56:10,189 --> 03:56:11,057
PROFESSOR AT MORGAN STATE

7129
03:56:11,057 --> 03:56:11,624
UNIVERSITY.

7130
03:56:11,624 --> 03:56:13,593
SO WELCOME, DR. MORGAN.

7131
03:56:13,593 --> 03:56:15,328
>> THANK YOU VERY MUCH.

7132
03:56:15,328 --> 03:56:18,364
I'M GOING TO TRY TO PUT MY TIMER

7133
03:56:18,364 --> 03:56:20,767
ON AND AS WELL AS READ SOME OF

7134
03:56:20,767 --> 03:56:23,403
MY NOTES BECAUSE I AM AN

7135
03:56:23,403 --> 03:56:25,104
EDUCATOR, SO MY PROFESSION TENDS

7136
03:56:25,104 --> 03:56:35,281
TO BE QUITE LOW QAIS LOQUACIOUS.

7137
03:56:35,281 --> 03:56:37,250
I'M EXTREMELY HONORED FOR BEING

7138
03:56:37,250 --> 03:56:39,919
INVITED TO BE ABLE TO SPEAK TO

7139
03:56:39,919 --> 03:56:40,420
YOU TODAY TO TALK ABOUT

7140
03:56:40,420 --> 03:56:42,422
SOMETHING I'M VERY PASSIONATE

7141
03:56:42,422 --> 03:56:43,423
ABOUT, AND THE SHARED PASSION

7142
03:56:43,423 --> 03:56:45,691
THAT WE HAVE ON THE TOPIC OF

7143
03:56:45,691 --> 03:56:46,893
ADVOCACY AND RESEARCH IN AUTISM.

7144
03:56:46,893 --> 03:56:48,728
I'M GOING TO SPEAK SPECIFICALLY

7145
03:56:48,728 --> 03:56:50,163
ON THE TOPICS OF THE

7146
03:56:50,163 --> 03:56:51,531
INTERSECTION OF RACE AND

7147
03:56:51,531 --> 03:56:52,999
DISABILITY IN THE CONTEXT OF

7148
03:56:52,999 --> 03:56:54,200
SUPPORTING BLACK FAMILIES WHO

7149
03:56:54,200 --> 03:56:55,701
HAVE BLACK CHILDREN ON THE

7150
03:56:55,701 --> 03:56:58,037
AUTISM SPECTRUM.

7151
03:56:58,037 --> 03:56:59,539
SO YOU GOT A LITTLE BIT OF

7152
03:56:59,539 --> 03:57:00,206
BACKGROUND ABOUT ME.

7153
03:57:00,206 --> 03:57:02,175
I ALSO SHOULD ADD THAT I HAVE

7154
03:57:02,175 --> 03:57:04,410
BEEN A PROGRAM COORDINATOR AND

7155
03:57:04,410 --> 03:57:10,349
ALSO A FAMILY LEND DIRECTOR FOR

7156
03:57:10,349 --> 03:57:13,753
OUR U.C. DAVIS LEND, EXCELLENCE

7157
03:57:13,753 --> 03:57:16,656
IN DEVELOPMENTAL DISABILITY,

7158
03:57:16,656 --> 03:57:18,624
SINCE 2014 AND ALSO BEEN A PART

7159
03:57:18,624 --> 03:57:21,461
OF THE ACD NETWORK AROUND THAT

7160
03:57:21,461 --> 03:57:22,795
SAME TIME.

7161
03:57:22,795 --> 03:57:25,498
BUT OUT OF ALL OF THOSE

7162
03:57:25,498 --> 03:57:27,567
POSITIONS, I WOULD SAY THE MOST

7163
03:57:27,567 --> 03:57:28,701
IMPORTANT ONE HAS TO DO WITH MY

7164
03:57:28,701 --> 03:57:30,770
POSITION AS MOTHER.

7165
03:57:30,770 --> 03:57:32,939
AND I AM A PROUD MOTHER OF A

7166
03:57:32,939 --> 03:57:35,775
CHILD ON THE AUTISM SPECTRUM.

7167
03:57:35,775 --> 03:57:38,177
I REALLY THINK THAT BY

7168
03:57:38,177 --> 03:57:39,479
POSITIONALITY IN PARTICULAR IS

7169
03:57:39,479 --> 03:57:40,780
VERY IMPORTANT WHEN WE'RE

7170
03:57:40,780 --> 03:57:42,415
TALKING ABOUT THIS TOPIC.

7171
03:57:42,415 --> 03:57:45,551
MY BACKGROUND AS A TEACHER AND

7172
03:57:45,551 --> 03:57:48,287
ALSO A K-8 ADMINISTRATOR REALLY

7173
03:57:48,287 --> 03:57:49,922
SETS THE TONE FOR THE WAY THAT I

7174
03:57:49,922 --> 03:57:53,192
PRESENT AND THE WORK THAT I DO.

7175
03:57:53,192 --> 03:57:55,394
AND IT WAS AS A TEACHER AND

7176
03:57:55,394 --> 03:57:56,762
ADMINISTRATOR IS WHEN I FIRST

7177
03:57:56,762 --> 03:57:57,230
REALLY EXPERIENCED THE

7178
03:57:57,230 --> 03:57:58,197
CHALLENGES THAT PARENTS AND

7179
03:57:58,197 --> 03:58:00,399
SCHOOL ADMINISTRATORS HAD WHEN

7180
03:58:00,399 --> 03:58:03,970
IT CAME TO NAVIGATING SCHOOL

7181
03:58:03,970 --> 03:58:05,705
SYSTEMS FOR THEIR CHILDREN WHO

7182
03:58:05,705 --> 03:58:08,341
HAD LEARNING DIFFERENCES AND

7183
03:58:08,341 --> 03:58:10,977
SOCIAL DIFFICULTIES.

7184
03:58:10,977 --> 03:58:12,678
AND THEN IN 2010, WHEN MY OWN

7185
03:58:12,678 --> 03:58:14,213
SON WAS DIAGNOSED TO BE ON THE

7186
03:58:14,213 --> 03:58:16,082
AUTISM SPECTRUM AT 2 1/2 YEARS

7187
03:58:16,082 --> 03:58:20,086
OLD, I WOULD SAY THIS FLAME

7188
03:58:20,086 --> 03:58:22,388
BECAME A WILDFIRE, AND IT

7189
03:58:22,388 --> 03:58:29,395
BROUGHT ME TO WHERE I AM TODAY.

7190
03:58:29,395 --> 03:58:31,130
SO NOW LET'S REALLY TALK ABOUT

7191
03:58:31,130 --> 03:58:33,966
THE STARK REALITIES THAT BLACK

7192
03:58:33,966 --> 03:58:35,268
FAMILIES HAVE IN ADVOCATING FOR

7193
03:58:35,268 --> 03:58:37,737
THEIR CHILDREN ON THE AUTISM

7194
03:58:37,737 --> 03:58:38,004
SPECTRUM.

7195
03:58:38,004 --> 03:58:39,639
SO THERE ARE CULTURAL AND SOCIAL

7196
03:58:39,639 --> 03:58:42,508
STIGMAS THAT ARE CAST ON THIS

7197
03:58:42,508 --> 03:58:43,142
JOURNEY.

7198
03:58:43,142 --> 03:58:45,645
ADDING LAYERS OF COMPLEXITY TO

7199
03:58:45,645 --> 03:58:48,381
AN ALREADY CHALLENGING PATH,

7200
03:58:48,381 --> 03:58:49,782
ACCESS TO RESOURCES AND SUPPORTS

7201
03:58:49,782 --> 03:58:51,851
BECOMES A BATTLEGROUND WHERE

7202
03:58:51,851 --> 03:58:54,253
SYSTEMIC INEQUALITIES OFTEN

7203
03:58:54,253 --> 03:58:55,688
LEAVE FAMILIES WITHOUT THE TOOLS

7204
03:58:55,688 --> 03:58:57,657
THEY NEED TO THRIVE.

7205
03:58:57,657 --> 03:58:58,991
NAVIGATING SYSTEMS, BE IT

7206
03:58:58,991 --> 03:58:59,759
EDUCATION, HEALTHCARE OR

7207
03:58:59,759 --> 03:59:03,029
COMMUNITY SERVICES, CAN FEEL

7208
03:59:03,029 --> 03:59:07,833
LAKE AN UPHILL BATTLE AGAINST --

7209
03:59:07,833 --> 03:59:08,935
ENTRENCHED BIAS AND BARRIERS.

7210
03:59:08,935 --> 03:59:12,605
SO WE HAVE LOTS OF RESEARCH ON

7211
03:59:12,605 --> 03:59:15,708
THE DISPARITIES FOR BLACK

7212
03:59:15,708 --> 03:59:16,709
FAMILIES AND SPECIFICALLY BLACK

7213
03:59:16,709 --> 03:59:18,978
FAMILIES OF CHILDREN WHO HAVE

7214
03:59:18,978 --> 03:59:20,746
DEVELOPMENTAL DIFFERENCES, BUT I

7215
03:59:20,746 --> 03:59:23,015
WAS FAR MORE INTERESTED IN THE

7216
03:59:23,015 --> 03:59:24,116
ASSET AND SO I'M GOING TO TALK

7217
03:59:24,116 --> 03:59:25,751
TO YOU A LITTLE BIT MORE ABOUT

7218
03:59:25,751 --> 03:59:29,689
THAT TODAY.

7219
03:59:29,689 --> 03:59:31,857
SO THE WORK THAT I WILL FOCUS ON

7220
03:59:31,857 --> 03:59:35,561
TODAY REALLY FOCUSES -- REALLY

7221
03:59:35,561 --> 03:59:38,731
CENTERS ON THE RESEARCH THAT

7222
03:59:38,731 --> 03:59:40,233
I'VE DONE, THREE PROJECTS IN

7223
03:59:40,233 --> 03:59:40,733
PARTICULAR THAT I WILL

7224
03:59:40,733 --> 03:59:41,934
HIGHLIGHT.

7225
03:59:41,934 --> 03:59:43,236
THE FIRST PAPER WAS PUBLISHED IN

7226
03:59:43,236 --> 03:59:45,905
THE JOURNAL PEDIATRICS, WHICH

7227
03:59:45,905 --> 03:59:46,672
WAS A COMMUNITY COLLABORATIVE

7228
03:59:46,672 --> 03:59:50,276
WORK THAT I DID WITH TWO

7229
03:59:50,276 --> 03:59:54,547
ADVOCATES WITHIN THE FIELD

7230
03:59:54,547 --> 03:59:58,150
REALLY FOCUSES ON HOW THE

7231
03:59:58,150 --> 03:59:58,751
INTERSECTIONALITY OF RACE AND

7232
03:59:58,751 --> 03:59:59,885
DISABILITY PLAY IN OUR SERVICE

7233
03:59:59,885 --> 04:00:01,087
DELIVERY SYSTEMS AND GOES DEEPER

7234
04:00:01,087 --> 04:00:03,789
INTO THE HISTORICAL IMPRINT THAT

7235
04:00:03,789 --> 04:00:05,658
BLACK ACTIVISTS AND CIVIL RIGHTS

7236
04:00:05,658 --> 04:00:08,160
LEADERS HAVE PLAYED IN THE

7237
04:00:08,160 --> 04:00:12,164
DISABILITY RIGHTS MOVEMENT.

7238
04:00:12,164 --> 04:00:13,799
THIS NEXT PAPER WHICH WAS

7239
04:00:13,799 --> 04:00:15,868
PUBLISHED IN THE BRITISH JOURNAL

7240
04:00:15,868 --> 04:00:17,436
OF SOCIOLOGY OF EDUCATION

7241
04:00:17,436 --> 04:00:19,272
FOCUSES ON AND HIGHLIGHTS THE

7242
04:00:19,272 --> 04:00:20,806
FAMILIES, THE ACTUAL MOTHERS.

7243
04:00:20,806 --> 04:00:23,075
I INTERVIEWED A BLACK MOTHER SO

7244
04:00:23,075 --> 04:00:25,211
I UNDERSTAND MORE ABOUT THEIR

7245
04:00:25,211 --> 04:00:27,647
EXPERIENCE ABOUT NAVIGATING THE

7246
04:00:27,647 --> 04:00:28,981
SERVICE SYSTEM, SPECIFICALLY

7247
04:00:28,981 --> 04:00:30,616
SCHOOL SYSTEMS, TO BE ABLE TO

7248
04:00:30,616 --> 04:00:32,351
THINK ABOUT THEIR ASSETS AND HE

7249
04:00:32,351 --> 04:00:33,986
LEARNED MORE ABOUT THE ASSETS

7250
04:00:33,986 --> 04:00:37,356
THAT THEY HAVE IN THEIR ADVOCACY

7251
04:00:37,356 --> 04:00:37,590
JOURNEY.

7252
04:00:37,590 --> 04:00:39,458
SO THE BOTTOM LINE TO THIS

7253
04:00:39,458 --> 04:00:40,126
PARTICULAR STUDY IS THAT THESE

7254
04:00:40,126 --> 04:00:41,761
BLACK MOTHERS WERE ABLE TO

7255
04:00:41,761 --> 04:00:43,496
NAVIGATE FOR THEIR CHILDREN AND

7256
04:00:43,496 --> 04:00:46,332
IT REALLY -- THAT CONTEXT WAS

7257
04:00:46,332 --> 04:00:49,268
KEY.

7258
04:00:49,268 --> 04:00:51,337
SO WHEN SCHOOLS WERE FAMILY

7259
04:00:51,337 --> 04:00:53,039
CENTERED AND THEY ENGAGED IN

7260
04:00:53,039 --> 04:00:54,073
FAMILY CENTERED PRACTICES, THEY

7261
04:00:54,073 --> 04:00:56,575
WERE ABLE TO USE THEIR ADVOCACY

7262
04:00:56,575 --> 04:00:58,344
STRAD GEES, THEIR ASSETS, TO BE

7263
04:00:58,344 --> 04:01:00,279
ABLE TO SUPPORT THEIR CHILDREN.

7264
04:01:00,279 --> 04:01:02,581
SO THAT'S A KEY PART OF THIS.

7265
04:01:02,581 --> 04:01:05,618
AND I THINK IN PARTICULAR IT WAS

7266
04:01:05,618 --> 04:01:07,019
MENTIONED THIS HIDDEN

7267
04:01:07,019 --> 04:01:10,189
CURRICULUM, ABSOLUTELY, IT IS A

7268
04:01:10,189 --> 04:01:10,856
HIDDEN CURRICULUM.

7269
04:01:10,856 --> 04:01:12,591
FOR SOME IT OPAQUE, IT'S A

7270
04:01:12,591 --> 04:01:13,926
LITTLE CLOUDY TO SEE, IT'S

7271
04:01:13,926 --> 04:01:14,794
REALLY HARD TO NAVIGATE.

7272
04:01:14,794 --> 04:01:17,163
YOU HAVE TO BE ABLE TO KNOW SOME

7273
04:01:17,163 --> 04:01:18,264
PEOPLE, POOL UPON RESOURCES AND

7274
04:01:18,264 --> 04:01:20,466
FOR SOME IT'S INVISIBLE.

7275
04:01:20,466 --> 04:01:22,468
AND IT ALMOST IS ERASED, WHERE

7276
04:01:22,468 --> 04:01:25,004
YOU HAVE TO DO SUPER HUMAN FEATS

7277
04:01:25,004 --> 04:01:26,539
IN ORDER TO BE ABLE TO

7278
04:01:26,539 --> 04:01:31,210
UNDERSTAND THESE REALLY COMPLEX

7279
04:01:31,210 --> 04:01:32,111
SYSTEMS.

7280
04:01:32,111 --> 04:01:33,279
SO JUST TO GIVE YOU A LITTLE BIT

7281
04:01:33,279 --> 04:01:34,513
MORE GROUNDING AND TO GIVE YOU

7282
04:01:34,513 --> 04:01:35,681
SOME CONTEXT TO THE TYPE OF

7283
04:01:35,681 --> 04:01:38,084
ASSETS THAT I WHAT LOOKING FOR

7284
04:01:38,084 --> 04:01:40,286
IN THIS PARTICULAR PROJECT, I

7285
04:01:40,286 --> 04:01:42,355
PULLED UPON SOME THEORETICAL

7286
04:01:42,355 --> 04:01:46,058
FRAMEWORKS TO HELP GIVE ME -- TO

7287
04:01:46,058 --> 04:01:50,963
REALLY SITUATE IT AND THESE

7288
04:01:50,963 --> 04:01:52,231
CULTURAL CAPITAL AND COMMUNITY

7289
04:01:52,231 --> 04:01:52,465
CAPITAL.

7290
04:01:52,465 --> 04:01:53,899
SO BECAUSE I'M A TEACHER AT

7291
04:01:53,899 --> 04:01:55,034
HEART I'M GOING TO GIVE YOU A

7292
04:01:55,034 --> 04:01:56,102
FEW VISUAL ILLUSTRATIONS JUST TO

7293
04:01:56,102 --> 04:01:59,805
MAKE IT PLAIP.

7294
04:01:59,805 --> 04:02:01,107
MAKE IT PLAIN.

7295
04:02:01,107 --> 04:02:02,742
WE THINK ABOUT CULTURAL CAPITAL

7296
04:02:02,742 --> 04:02:04,543
AS SOCIETAL ASSETS THAT GROUPS

7297
04:02:04,543 --> 04:02:05,010
OF PEOPLE HOLD.

7298
04:02:05,010 --> 04:02:06,879
SUCH AS THEIR EDUCATION, THEIR

7299
04:02:06,879 --> 04:02:07,213
PEDIGREE.

7300
04:02:07,213 --> 04:02:10,149
THIS IS THE CLASSIC DEFINITION

7301
04:02:10,149 --> 04:02:12,351
OF CULTURAL CAPITAL THAT SOCIAL

7302
04:02:12,351 --> 04:02:16,188
YOL GISTS HAVE USED FOR YEARS,

7303
04:02:16,188 --> 04:02:19,091
SO IT LOOKS SOMETHING LIKE THIS.

7304
04:02:19,091 --> 04:02:20,426
YOU ARE BORN WITH A GROUP OF

7305
04:02:20,426 --> 04:02:21,627
ASSETS, MAYBE YOU'RE THE PIGGY

7306
04:02:21,627 --> 04:02:24,096
ON TOP, YOU HAVE RESOURCES, YOU

7307
04:02:24,096 --> 04:02:25,097
HAVE THINGS THAT YOU ARE BORN

7308
04:02:25,097 --> 04:02:26,732
IN, THE TRANSMISSION OF STATUS

7309
04:02:26,732 --> 04:02:34,807
IN POWER HAS BEEN SPAED COU PAS.

7310
04:02:34,807 --> 04:02:36,008
OR YOU ARE SOMEONE THAT'S BORN

7311
04:02:36,008 --> 04:02:36,976
WITH NONE, RIGHT?

7312
04:02:36,976 --> 04:02:39,178
SO YOU'RE LIKE THIS BROKE PIGGY

7313
04:02:39,178 --> 04:02:39,378
BANK.

7314
04:02:39,378 --> 04:02:39,879
IT'S REALLY SIMPLE.

7315
04:02:39,879 --> 04:02:42,948
YOU EITHER HAVE IT OR YOU'RE NOT

7316
04:02:42,948 --> 04:02:44,583
OR YOU DON'T WHEN IT COMES TO

7317
04:02:44,583 --> 04:02:46,318
THAT BASIC DEFINITION.

7318
04:02:46,318 --> 04:02:48,821
SO I ALSO PULLED UPON THIS

7319
04:02:48,821 --> 04:02:49,688
COMMUNITY CULTURAL WEALTH

7320
04:02:49,688 --> 04:02:51,524
FRAMEWORK THAT REALLY LOOKS AT

7321
04:02:51,524 --> 04:02:54,193
THE ASSETS THAT COMMUNITIES OF

7322
04:02:54,193 --> 04:02:56,695
COLOR IN PARTICULAR HAVE THAT

7323
04:02:56,695 --> 04:02:59,965
ARE TRANSMITTED AND TRANSLATABLE

7324
04:02:59,965 --> 04:03:01,400
INTO RESOURCES AND SUPPORTS FOR

7325
04:03:01,400 --> 04:03:02,468
COMMUNITIES OF COLOR.

7326
04:03:02,468 --> 04:03:04,537
THESE ARE CAPITAL THAT ARE OFTEN

7327
04:03:04,537 --> 04:03:06,071
UNACKNOWLEDGED AND UNRECOGNIZED

7328
04:03:06,071 --> 04:03:09,008
IN COMMUNITIES OF COLOR AND ARE

7329
04:03:09,008 --> 04:03:10,876
ACTIVE IN INTERNAL RESOURCES FOR

7330
04:03:10,876 --> 04:03:11,844
VEHICLES FOR MOBILITY.

7331
04:03:11,844 --> 04:03:15,347
SO AN EXAMPLE FOR THIS WOULD BE

7332
04:03:15,347 --> 04:03:21,353
THIS PICKY.

7333
04:03:21,353 --> 04:03:23,656
MISS PIGGY IS ABLE TO NAVIGATE

7334
04:03:23,656 --> 04:03:26,859
HOSTILE ENVIRONMENTS, ENTRENCHED

7335
04:03:26,859 --> 04:03:29,462
WITH SYSTEMIC INSTITUTIONAL AND

7336
04:03:29,462 --> 04:03:30,763
SOCIETAL OPPRESSIONS.

7337
04:03:30,763 --> 04:03:36,035
SO I WON'T GO TOO FAR INTO THE

7338
04:03:36,035 --> 04:03:38,170
DETAILS BUT JUST TO GIVE YOU

7339
04:03:38,170 --> 04:03:39,605
SOME UNDERSTANDING, THE SPECIFIC

7340
04:03:39,605 --> 04:03:40,773
CAPITALS THAT I WAS LOOKING FOR

7341
04:03:40,773 --> 04:03:43,442
IN THE INTERVIEWS WITH THE

7342
04:03:43,442 --> 04:03:45,611
MOTHERS INCLUDED SOME OF THESE

7343
04:03:45,611 --> 04:03:46,345
THEORISTS.

7344
04:03:46,345 --> 04:03:50,749
SO THIS PARTICULAR THEORY IS THE

7345
04:03:50,749 --> 04:03:51,617
COMMUNITY CULTURAL WEALTH MODEL

7346
04:03:51,617 --> 04:03:53,719
AND THERE ARE SIX CAPITALS.

7347
04:03:53,719 --> 04:03:54,753
I'M GOING TO HIGHLIGHT TWO OF

7348
04:03:54,753 --> 04:03:56,088
THEM BECAUSE THESE WERE THE MOST

7349
04:03:56,088 --> 04:03:57,957
SALIENT IN THE RESEARCH.

7350
04:03:57,957 --> 04:03:59,692
SO RESISTANCE CAPITAL REFERS TO

7351
04:03:59,692 --> 04:04:03,295
THE SKILLS AND ACKNOWLEDGES

7352
04:04:03,295 --> 04:04:04,964
FOSTERED THROUGH OPPOSITIONAL

7353
04:04:04,964 --> 04:04:07,333
BEHAVIOR AND CHALLENGES AND

7354
04:04:07,333 --> 04:04:08,400
INEQUITY.

7355
04:04:08,400 --> 04:04:09,301
NAVIGATIONAL CAPITAL REFERS TO

7356
04:04:09,301 --> 04:04:10,703
THE SKILLS OF MANEUVERING

7357
04:04:10,703 --> 04:04:13,072
THROUGH SYSTEMS THAT ARE BUILT

7358
04:04:13,072 --> 04:04:14,173
IN INSTITUTIONS THAT ARE BUILT

7359
04:04:14,173 --> 04:04:15,841
WITH YOU NOT IN MIND.

7360
04:04:15,841 --> 04:04:19,011
SO WE KNOW FOR SCHOOLS AND

7361
04:04:19,011 --> 04:04:20,546
PARTICULAR FOR BLACK FAMILIES OR

7362
04:04:20,546 --> 04:04:21,814
BLACK PEOPLE THAT SCHOOLS WERE

7363
04:04:21,814 --> 04:04:25,017
NOT BUILT FOR US IN MIND, BROWN

7364
04:04:25,017 --> 04:04:27,686
V. BOARD IS A REASON WHY WE ARE

7365
04:04:27,686 --> 04:04:30,022
INCLUDED IN THESE INSTITUTIONS,

7366
04:04:30,022 --> 04:04:31,524
SO THIS IS AN EXAMPLE OF THOSE

7367
04:04:31,524 --> 04:04:32,424
THINGS.

7368
04:04:32,424 --> 04:04:35,895
SO I ALSO PULLED UPON SOME OTHER

7369
04:04:35,895 --> 04:04:37,129
THEORISTS TO BE ABLE TO GIVE US

7370
04:04:37,129 --> 04:04:38,097
SOME CONTEXTS.

7371
04:04:38,097 --> 04:04:42,001
SO JUST TO HIGHLIGHT MARTIN

7372
04:04:42,001 --> 04:04:45,871
LUTHER KING-CHANG LO'S WORK FROM

7373
04:04:45,871 --> 04:04:46,639
U.C. DAVIS SPECIFICALLY LOOKING

7374
04:04:46,639 --> 04:04:48,040
AT MOTHERHOOD CAPITAL.

7375
04:04:48,040 --> 04:04:50,576
BECAUSE I LOOKED AT SINGLE BLACK

7376
04:04:50,576 --> 04:04:51,744
MOTHERS, AND HER WORK

7377
04:04:51,744 --> 04:04:57,650
SPECIFICALLY LOOKED AT 25 LOW

7378
04:04:57,650 --> 04:04:59,752
INCOME MEXICAN IMMIGRANT MOTHERS

7379
04:04:59,752 --> 04:05:01,587
AND HOW THEY WERE ABLE TO USE

7380
04:05:01,587 --> 04:05:03,556
THEIR ADVOCACY TO BE ABLE TO

7381
04:05:03,556 --> 04:05:04,857
NAVIGATE MEDICAL SYSTEMS TO BE

7382
04:05:04,857 --> 04:05:06,392
ABLE TO SUPPORT THEIR CHILDREN.

7383
04:05:06,392 --> 04:05:08,694
THEN DR. PRUDENCE CARTER'S WORK,

7384
04:05:08,694 --> 04:05:14,567
THEY LOOKED AT BLACK CULTURAL

7385
04:05:14,567 --> 04:05:16,535
CAPITAL THAT EXISTS IN VARIOUS

7386
04:05:16,535 --> 04:05:19,138
SPHERES AND THE ABILITY TOLL

7387
04:05:19,138 --> 04:05:21,140
FLUIDLY GO BETWEEN THESE THINGS.

7388
04:05:21,140 --> 04:05:22,107
IF YOU'VE EVER HEARD OF THE TERM

7389
04:05:22,107 --> 04:05:23,842
"CODE SWITCHING," SO IT'S THE

7390
04:05:23,842 --> 04:05:26,211
IDEA OF BEING ABLE TO UNDERSTAND

7391
04:05:26,211 --> 04:05:27,780
VALUES, NORMS AND PRACTICES THAT

7392
04:05:27,780 --> 04:05:28,981
BELONG TO DIFFERENT GROUPS AND

7393
04:05:28,981 --> 04:05:31,283
BE ABLE TO FLUIDLY GO IN BETWEEN

7394
04:05:31,283 --> 04:05:32,251
THOSE THINGS.

7395
04:05:32,251 --> 04:05:34,019
SO I WAS LOOKING AT THOSE THINGS

7396
04:05:34,019 --> 04:05:35,321
IN THE CONTEXT OF THE INTERVIEWS

7397
04:05:35,321 --> 04:05:38,157
FOR THE MOTHERS AND THEIR

7398
04:05:38,157 --> 04:05:39,158
EXPERIENCES.

7399
04:05:39,158 --> 04:05:40,659
THIS IS JUST A FEW -- A LITTLE

7400
04:05:40,659 --> 04:05:42,628
BIT OF DEMOGRAPHICS FROM MY

7401
04:05:42,628 --> 04:05:43,195
COLLABORATORS.

7402
04:05:43,195 --> 04:05:45,798
SO FOR THE FIVE THAT I WAS ABLE

7403
04:05:45,798 --> 04:05:48,534
TO INTERVIEW BY THE TIME I GOT

7404
04:05:48,534 --> 04:05:50,736
SATURATION, I WAS ABLE TO SEE

7405
04:05:50,736 --> 04:05:52,004
THAT THERE WERE SOME PATTERNS

7406
04:05:52,004 --> 04:05:53,272
THAT WERE COMING ABOUT AND I'LL

7407
04:05:53,272 --> 04:05:54,139
TALK TO YOU A LITTLE BIT ABOUT

7408
04:05:54,139 --> 04:05:54,573
THOSE.

7409
04:05:54,573 --> 04:05:57,610
SO JUST FOR -- MOST OF THE

7410
04:05:57,610 --> 04:05:59,211
MOTHERS WERE ON AVERAGE ABOUT 47

7411
04:05:59,211 --> 04:06:00,579
YEARS OLD, AND MOST CHILDREN

7412
04:06:00,579 --> 04:06:02,982
WERE ABOUT 10 YEARS OLD BY THE

7413
04:06:02,982 --> 04:06:04,416
TIME THAT I INTERVIEWED THEM.

7414
04:06:04,416 --> 04:06:08,120
ALL OF THEM, WHEN IT CAME TO

7415
04:06:08,120 --> 04:06:09,989
THEIR CHILD'S PLACEMENT IN

7416
04:06:09,989 --> 04:06:10,990
SCHOOLING, ALL OF THEIR CHILDREN

7417
04:06:10,990 --> 04:06:12,558
WERE IN ONE OF THE MOST

7418
04:06:12,558 --> 04:06:13,459
RESTRICTIVE ENVIRONMENTS.

7419
04:06:13,459 --> 04:06:15,094
SO THESE CHILDREN WERE ALL IN

7420
04:06:15,094 --> 04:06:16,962
DISABILITY SPECIFIC CLASSROOMS.

7421
04:06:16,962 --> 04:06:18,697
ONLY ONE OF THE MOTHERS WERE

7422
04:06:18,697 --> 04:06:19,832
ABLE TO ADVOCATE FOR THEIR CHILD

7423
04:06:19,832 --> 04:06:22,368
FOR A NON-DISABILITY CLASSROOM,

7424
04:06:22,368 --> 04:06:25,604
NOT UNTIL HIS JUNIOR HIGH --

7425
04:06:25,604 --> 04:06:26,939
WHETHER HE WAS IN JUNIOR HIGH.

7426
04:06:26,939 --> 04:06:28,574
I SHOULD GIVE YOU CONTEXT, THESE

7427
04:06:28,574 --> 04:06:31,276
PARENTS WERE NEVER OFFERED LEAST

7428
04:06:31,276 --> 04:06:31,877
RESTRICTIVE ENVIRONMENT, THEY

7429
04:06:31,877 --> 04:06:32,344
WERE NEVER OFFERED AN

7430
04:06:32,344 --> 04:06:34,346
OPPORTUNITY FOR INCLUSION, SO IT

7431
04:06:34,346 --> 04:06:35,447
WASN'T UNTIL THEY HAD KNOWLEDGE

7432
04:06:35,447 --> 04:06:37,282
THAT THIS WAS SOMETHING THAT WAS

7433
04:06:37,282 --> 04:06:37,883
IN THEIR RIGHTS, WITHIN THEIR

7434
04:06:37,883 --> 04:06:38,851
CHILD'S RIGHTS, THEY WERE ABLE

7435
04:06:38,851 --> 04:06:40,686
TO TRY TO ADVOCATE TO THIS AND

7436
04:06:40,686 --> 04:06:44,957
SOME WERE SUCCESSFUL.

7437
04:06:44,957 --> 04:06:46,925
SO LIKE I SAID I'LL HIGHLIGHT

7438
04:06:46,925 --> 04:06:47,693
JUST TWO PARTICULAR CAPITALS

7439
04:06:47,693 --> 04:06:49,094
THAT I THINK ARE REALLY

7440
04:06:49,094 --> 04:06:51,230
IMPORTANT IN JUST PULLED OUT AND

7441
04:06:51,230 --> 04:06:51,930
I WANT YOU TO HEAR THE VOICES OF

7442
04:06:51,930 --> 04:06:54,366
THE PARENTS.

7443
04:06:54,366 --> 04:06:58,303
SO THIS CAME FROM EVELYN.

7444
04:06:58,303 --> 04:06:59,371
RESISTANCE CAPITAL.

7445
04:06:59,371 --> 04:06:59,905
AND I WILL TELL YOU THIS.

7446
04:06:59,905 --> 04:07:00,873
THIS IS WHAT CAME THROUGH THE

7447
04:07:00,873 --> 04:07:02,141
YEARS STANDING UP TO PEOPLE IN A

7448
04:07:02,141 --> 04:07:03,342
ROOM THAT DON'T LOOK LIKE YOU.

7449
04:07:03,342 --> 04:07:04,743
IT REQUIRES YOU TO USE THE

7450
04:07:04,743 --> 04:07:05,411
KNOWLEDGE YOU HAVE.

7451
04:07:05,411 --> 04:07:06,512
IT REQUIRES YOU TO USE

7452
04:07:06,512 --> 04:07:07,513
UNDERSTANDING YOU HAVE.

7453
04:07:07,513 --> 04:07:09,314
IT REQUIRES YOU TO REALIZE TA

7454
04:07:09,314 --> 04:07:10,649
YOU GOT THIS.

7455
04:07:10,649 --> 04:07:12,217
AND YOU KNOW WHAT'S BEST FOR

7456
04:07:12,217 --> 04:07:16,021
YOUR CHILD.

7457
04:07:16,021 --> 04:07:19,491
SO THESE ARE SPECIFICALLY THE

7458
04:07:19,491 --> 04:07:20,959
TWO PIECES THAT WE'RE GOING TO

7459
04:07:20,959 --> 04:07:22,094
HIGHLIGHT AND THEN I'M GOING TO

7460
04:07:22,094 --> 04:07:23,495
TELL YOU HOW THEY MANIFEST

7461
04:07:23,495 --> 04:07:26,765
THEMSELVES.

7462
04:07:26,765 --> 04:07:31,336
SO 1/ NAVIGATIONAL CAPITAL IS TE

7463
04:07:31,336 --> 04:07:32,337
NEXT ONE.

7464
04:07:32,337 --> 04:07:33,405
JOSEPHINE SAYS I THINK IT WAS

7465
04:07:33,405 --> 04:07:34,239
HARDER BECAUSE I HAVEN'T SEEN A

7466
04:07:34,239 --> 04:07:35,974
LOT OF SINGLE BLACK WOMEN OUT

7467
04:07:35,974 --> 04:07:36,175
THERE.

7468
04:07:36,175 --> 04:07:37,609
IT REQUIRED ME TO REMOVE MYSELF

7469
04:07:37,609 --> 04:07:39,178
OUT OF THAT GRIEF STATE AND

7470
04:07:39,178 --> 04:07:42,381
REALIZE THAT I HAVE TO FIND OUT,

7471
04:07:42,381 --> 04:07:44,083
I HAVE TO FIGURE OUT WHAT'S

7472
04:07:44,083 --> 04:07:50,089
GONNA BENEFIT MY CHILD.

7473
04:07:50,089 --> 04:07:52,357
SO NOW LET ME JUST QUICKLY SEGUE

7474
04:07:52,357 --> 04:07:55,327
INTO RESEARCH INTO PRACTICE, SO

7475
04:07:55,327 --> 04:07:56,662
TRANSLATING THIS TO SPECIFICALLY

7476
04:07:56,662 --> 04:07:59,932
FOCUS ON OUR RESEARCH BASED MO

7477
04:07:59,932 --> 04:08:01,767
MODEL THAT HAS BEEN DEVELOPED IN

7478
04:08:01,767 --> 04:08:03,635
CALIFORNIA BUT ALSO HAVE BEEN

7479
04:08:03,635 --> 04:08:05,704
REPLICATED IN WISCONSIN.

7480
04:08:05,704 --> 04:08:12,044
AND THIS IS THE SANKOFA FAMILY

7481
04:08:12,044 --> 04:08:13,378
SUPPORT MODEL, A FRAMEWORK THAT

7482
04:08:13,378 --> 04:08:15,314
WE ACTUALLY HAVE DEVELOPED SINCE

7483
04:08:15,314 --> 04:08:15,581
2015.

7484
04:08:15,581 --> 04:08:17,516
IT HAS BEEN IMPLEMENTED AT THE

7485
04:08:17,516 --> 04:08:19,118
U.C. DAVIS MIND INSTITUTE SINCE

7486
04:08:19,118 --> 04:08:21,186
2015 AND NOW WE HAVE A FRAMEWORK

7487
04:08:21,186 --> 04:08:22,254
THAT WE ARE ABLE TO -- WE ARE IN

7488
04:08:22,254 --> 04:08:24,389
THE PROCESS OF BEING ABLE TO

7489
04:08:24,389 --> 04:08:26,792
DISTRIBUTE AND MAKE AVAILABLE TO

7490
04:08:26,792 --> 04:08:27,993
FAMILIES IN INSTITUTIONING AND

7491
04:08:27,993 --> 04:08:30,295
ORGANIZATIONS IN EARLY FALL.

7492
04:08:30,295 --> 04:08:33,465
SO IT SPECIFICALLY DESIGNED FOR

7493
04:08:33,465 --> 04:08:35,300
AND BY BLACK FAMILIES AND

7494
04:08:35,300 --> 04:08:36,268
PROVIDERS AND ALSO BLACK

7495
04:08:36,268 --> 04:08:38,737
FAMILIES AND PROVIDERS, AUTISTIC

7496
04:08:38,737 --> 04:08:40,672
BLACK FAMILIES AND PROVIDERS

7497
04:08:40,672 --> 04:08:42,875
THAT ARE TO BE ABLE TO GIVE US

7498
04:08:42,875 --> 04:08:45,611
INSIGHT INTO HOW TO BE ABLE TO

7499
04:08:45,611 --> 04:08:49,748
SUPPORT BARACK FAMILIES W BLACKE

7500
04:08:49,748 --> 04:08:50,649
NAVIGATING THESE SYSTEMS.

7501
04:08:50,649 --> 04:08:52,284
SO THIS IS A PAPER THAT YOU CAN

7502
04:08:52,284 --> 04:08:53,685
READ TO UNDERSTAND A LITTLE BIT

7503
04:08:53,685 --> 04:08:55,320
MORE OF THE BACKGROUND TO THIS

7504
04:08:55,320 --> 04:08:57,823
PARTICULAR SUPPORT GROUP AND

7505
04:08:57,823 --> 04:08:59,525
FRAMEWORK AND A MODEL.

7506
04:08:59,525 --> 04:09:00,592
THIS WAS A PAPER THAT WAS

7507
04:09:00,592 --> 04:09:05,063
WRITTEN BY ALL -- BY BLACK

7508
04:09:05,063 --> 04:09:07,699
MOTHERS AND PROVIDERS AND AS

7509
04:09:07,699 --> 04:09:15,574
WELL AS YO UCEDD DIRECTORS, BOTN

7510
04:09:15,574 --> 04:09:17,776
CALIFORNIA AND WISCONSIN AND ALL

7511
04:09:17,776 --> 04:09:18,844
DIRECTLY CONNECTED TO OUR GROUP.

7512
04:09:18,844 --> 04:09:22,114
SO THIS IS -- THESE ARE A FEW

7513
04:09:22,114 --> 04:09:23,882
EXCERPTS FROM THE PAPER AND THIS

7514
04:09:23,882 --> 04:09:25,584
ACTUALLY GIVES YOU -- THESE ARE

7515
04:09:25,584 --> 04:09:29,154
TWO OF THE MOTHERS WHO ARE

7516
04:09:29,154 --> 04:09:32,191
LEADERS IN SANKOFA.

7517
04:09:32,191 --> 04:09:37,796
ONE FROM BENITA SHAW, SHE STATES

7518
04:09:37,796 --> 04:09:39,865
SAN COFA IS A SPACE FOR BLACK

7519
04:09:39,865 --> 04:09:40,966
FAMILIES OF CHILDREN WITH

7520
04:09:40,966 --> 04:09:42,434
VARIOUS DISABILITIES TO COME AND

7521
04:09:42,434 --> 04:09:43,402
MEET OTHER FAMILIES, GET

7522
04:09:43,402 --> 04:09:44,503
MENTORED, LEARN SKILLS AND BE

7523
04:09:44,503 --> 04:09:45,470
VULNERABLE WITH PEOPLE THEY CAN

7524
04:09:45,470 --> 04:09:45,904
TRUST.

7525
04:09:45,904 --> 04:09:47,439
THEN IDA WINTERS WHO IS IN

7526
04:09:47,439 --> 04:09:48,207
WISCONSIN STATED, I WAS

7527
04:09:48,207 --> 04:09:50,275
FORTUNATE ENOUGH TO BE CONNECTED

7528
04:09:50,275 --> 04:09:52,811
WITH SANKOFA, I ATTENDED ONE

7529
04:09:52,811 --> 04:09:58,951
MEETING AND IT CHANGED MY LIFE.

7530
04:09:58,951 --> 04:09:59,551
SO SANKOFA IN A NUTSHELL IS A

7531
04:09:59,551 --> 04:10:02,454
GROUP THAT MEETS MONTHLY, NOW

7532
04:10:02,454 --> 04:10:07,626
VIRTUALLY, AND THE WHOLE PURPOSE

7533
04:10:07,626 --> 04:10:10,462
IS TO BE ABLE TO SUPPORT AND

7534
04:10:10,462 --> 04:10:12,664
PROVIDE CULTURALLY RELEVANT AND

7535
04:10:12,664 --> 04:10:13,632
SENSITIVE RESOURCES AND

7536
04:10:13,632 --> 04:10:15,267
TRAININGS AND SPACES FOR

7537
04:10:15,267 --> 04:10:16,902
FAMILIES WHO HAVE BLACK CHILDREN

7538
04:10:16,902 --> 04:10:17,569
WITH DEVELOPMENTAL DISABILITIES.

7539
04:10:17,569 --> 04:10:19,838
AND WE REALLY STRIVE TO BE

7540
04:10:19,838 --> 04:10:23,141
CULTURAL BROKERS AND CULTURAL

7541
04:10:23,141 --> 04:10:26,178
SUPPORTERS OF OUR COMMUNITY.

7542
04:10:26,178 --> 04:10:28,380
AND AS WELL AS ERASE STIGMA

7543
04:10:28,380 --> 04:10:29,915
ASSOCIATED WITH STABILITY WITHIN

7544
04:10:29,915 --> 04:10:30,249
OUR COMMUNITY.

7545
04:10:30,249 --> 04:10:31,583
SO I'M GOING TO GIVE YOU A FEW

7546
04:10:31,583 --> 04:10:34,086
TESTIMONIES FROM OUR SANKOFA

7547
04:10:34,086 --> 04:10:34,519
MEMBERS.

7548
04:10:34,519 --> 04:10:36,355
THIS IS VALERIE CRAWFORD, ONE OF

7549
04:10:36,355 --> 04:10:37,322
OUR MOTHERS.

7550
04:10:37,322 --> 04:10:38,557
I'LL GIVEN YOU JUST 10 SECONDS

7551
04:10:38,557 --> 04:10:47,966
TO READ IT.

7552
04:10:47,966 --> 04:10:50,369
JUST TO REALLY HIGHLIGHT THE

7553
04:10:50,369 --> 04:10:51,503
LAST PART OF HER SENTENCE, I

7554
04:10:51,503 --> 04:10:52,938
HAVE BECOME A STRONG ADVOCATE

7555
04:10:52,938 --> 04:10:53,338
FOR MY CHILD.

7556
04:10:53,338 --> 04:10:55,741
THAT'S THE GOAL, RIGHT, TO HAVE

7557
04:10:55,741 --> 04:10:58,277
THIS OPPORTUNITY FOR A PARENT

7558
04:10:58,277 --> 04:10:59,912
AND A CAREGIVER TO HAVE A SPACE

7559
04:10:59,912 --> 04:11:03,248
TO LEARN THEIR OWN ADVOCACY

7560
04:11:03,248 --> 04:11:04,216
STYLE, LEARN THEIR OWN WAY OF

7561
04:11:04,216 --> 04:11:05,851
BEING ABLE TO NAVIGATE THIS

7562
04:11:05,851 --> 04:11:07,019
SYSTEM AND HAVE THAT CONFIDENCE

7563
04:11:07,019 --> 04:11:08,921
TO BE ABLE TO DO SO.

7564
04:11:08,921 --> 04:11:10,689
I NEXT AM GOING TO GIVE YOU A

7565
04:11:10,689 --> 04:11:14,192
VIDEO FROM ONE OF OUR SANKOFA

7566
04:11:14,192 --> 04:11:15,727
MEMBERS, DIANE MILNER, AND SHE'S

7567
04:11:15,727 --> 04:11:16,929
GOING TO TALK SPECIFICALLY ABOUT

7568
04:11:16,929 --> 04:11:20,465
HOW SHE DESCRIBES THE NEED FOR

7569
04:11:20,465 --> 04:11:21,767
GROUPS LIKE SANKOFA AND BLACK

7570
04:11:21,767 --> 04:11:22,868
FAMILIES SO LET'S LISTEN A

7571
04:11:22,868 --> 04:11:24,736
LITTLE BIT TO DIANE AND GIVE A

7572
04:11:24,736 --> 04:11:28,273
LITTLE MORE CONTEXT.

7573
04:11:28,273 --> 04:11:30,676
>> SO I WANTED TO TALK A
LITTLE

7574
04:11:30,676 --> 04:11:31,543
BIT ABOUT THE INTERSECTION

7575
04:11:31,543 --> 04:11:33,946
BETWEEN RACE AND DISABILITY AND

7576
04:11:33,946 --> 04:11:37,416
SPECIFICALLY AFRICAN AMERICANS.

7577
04:11:37,416 --> 04:11:41,653
WHAT I'VE FOUND THAT A LOT OF

7578
04:11:41,653 --> 04:11:44,222
AFRICAN AMERICANS ARE EAGER TO

7579
04:11:44,222 --> 04:11:45,757
GET INFORMATION AND SUPPORT FROM

7580
04:11:45,757 --> 04:11:47,793
EACH OTHER INCLUDING MYSELF.

7581
04:11:47,793 --> 04:11:50,629
BUT A LOT OF TIMES WE'RE NOT

7582
04:11:50,629 --> 04:11:54,466
PRIVY TO THE SOURCES OF

7583
04:11:54,466 --> 04:11:57,135
INFORMATION, SO WE HAVE TO HELP

7584
04:11:57,135 --> 04:12:00,205
EACH OTHER PROVIDE THAT.

7585
04:12:00,205 --> 04:12:01,606
SO FOR INSTANCE, I'VE ALREADY

7586
04:12:01,606 --> 04:12:03,809
PARTICIPATED IN PROBABLY THREE

7587
04:12:03,809 --> 04:12:06,712
OR FOUR OTHER GENERAL -- GENERAL

7588
04:12:06,712 --> 04:12:07,379
PARENT SUPPORT GROUPS THAT

7589
04:12:07,379 --> 04:12:09,548
INCLUDE ALL RACES AND THE

7590
04:12:09,548 --> 04:12:11,316
INFORMATION THAT I'VE LEARNED

7591
04:12:11,316 --> 04:12:13,618
HAS BEEN PHENOMENAL, BUT WHEN I

7592
04:12:13,618 --> 04:12:15,787
TALK TO OTHER -- MANY OTHER

7593
04:12:15,787 --> 04:12:16,588
PARENTS OF AFRICAN AMERICANS, A

7594
04:12:16,588 --> 04:12:17,990
LOT OF TIMES THEY DON'T KNOW

7595
04:12:17,990 --> 04:12:20,292
ABOUT THESE GROUPS, THEY DON'T

7596
04:12:20,292 --> 04:12:21,660
KNOW ABOUT THE INFORMATION AND

7597
04:12:21,660 --> 04:12:22,995
THEY ARE SO GRATEFUL AND EAGER

7598
04:12:22,995 --> 04:12:24,863
TO LEARN ABOUT IT.

7599
04:12:24,863 --> 04:12:28,734
SO IT'S REALLY A -- I THINK A

7600
04:12:28,734 --> 04:12:30,402
LACK OF INFORMATION AND

7601
04:12:30,402 --> 04:12:31,903
COORDINATION AND WE NEED TO

7602
04:12:31,903 --> 04:12:33,905
IMPROVE THAT AND THAT'S WHY

7603
04:12:33,905 --> 04:12:39,011
SANKOFA IS SO IMPORTANT.

7604
04:12:39,011 --> 04:12:40,779
ONE OF THE EXAMPLES, I THINK, OF

7605
04:12:40,779 --> 04:12:45,917
THE INTERSECTIONALITY OF RACE

7606
04:12:45,917 --> 04:12:47,886
AND DISABILITY INVOLVES MY

7607
04:12:47,886 --> 04:12:48,320
DAUGHTER.

7608
04:12:48,320 --> 04:12:51,289
SO MY DAUGHTER IS 32 YEARS OLD,

7609
04:12:51,289 --> 04:12:54,593
AND OVER THE YEARS, WE DIDN'T

7610
04:12:54,593 --> 04:12:57,429
REALLY KNOW THAT SOME OF THE

7611
04:12:57,429 --> 04:12:58,764
SYMPTOMS SHE EXHIBITED COULD

7612
04:12:58,764 --> 04:12:59,831
INDICATE THAT SHE HAS AUTISM.

7613
04:12:59,831 --> 04:13:02,768
SO SHE WAS NOT DIAGNOSED WITH

7614
04:13:02,768 --> 04:13:05,404
AUTISM UNTIL THIS YEAR, SO SHE

7615
04:13:05,404 --> 04:13:06,605
WAS 32 YEARS OLD, AND I'VE READ

7616
04:13:06,605 --> 04:13:11,076
IN THE LITERATURE THAT A LOT OF

7617
04:13:11,076 --> 04:13:14,713
AFRICAN AMERICAN CHILDREN ARE

7618
04:13:14,713 --> 04:13:16,281
DIAGNOSED ON THE AUTISM SPECTRUM

7619
04:13:16,281 --> 04:13:17,382
VERY LATE.

7620
04:13:17,382 --> 04:13:18,917
SO I DON'T KNOW IF IT'S

7621
04:13:18,917 --> 04:13:20,352
DELIBERATE, IF IT'S JUST

7622
04:13:20,352 --> 04:13:21,887
NEGLECT, IT'S PROBABLY A

7623
04:13:21,887 --> 04:13:24,089
COMBINATION OF BOTH, OR

7624
04:13:24,089 --> 04:13:25,424
IGNORANCE, BUT BECAUSE I DID NOT

7625
04:13:25,424 --> 04:13:26,825
KNOW THAT, I DIDN'T KNOW WHAT TO

7626
04:13:26,825 --> 04:13:28,326
LOOK FOR.

7627
04:13:28,326 --> 04:13:32,431
I WISH I HAD TALKED TO MORE

7628
04:13:32,431 --> 04:13:35,300
PEOPLE, I WISH I HAD HAD A GROUP

7629
04:13:35,300 --> 04:13:37,035
WHEN ASHLEY WAS A LOT YOUNGER SO

7630
04:13:37,035 --> 04:13:39,004
THAT I WOULD BECOME MORE

7631
04:13:39,004 --> 04:13:40,639
FAMILIAR WITH WHAT TO LOOK FOR.

7632
04:13:40,639 --> 04:13:41,640
AND I THINK IT'S IMPORTANT FOR

7633
04:13:41,640 --> 04:13:46,211
US TO SPREAD THE WORD TO OTHER

7634
04:13:46,211 --> 04:13:46,978
AFRICAN AMERICANS THAT THEY NEED

7635
04:13:46,978 --> 04:13:48,413
TO BE LOOKING FOR THESE SIGNS

7636
04:13:48,413 --> 04:13:50,148
AND ASKING QUESTIONS BECAUSE A

7637
04:13:50,148 --> 04:13:55,387
LOT OF TIMES PROFESSIONALS,

7638
04:13:55,387 --> 04:13:56,421
EDUCATORS, PROBABLY NOT

7639
04:13:56,421 --> 04:13:58,190
INTENTIONALLY BUT SOMETIMES

7640
04:13:58,190 --> 04:14:00,225
PROBABLY OUT OF NEGLECT DON'T

7641
04:14:00,225 --> 04:14:02,961
ALWAYS DIAGNOSE OUR CHILDREN IN

7642
04:14:02,961 --> 04:14:05,097
THE SAME LEVEL THAT THEY'VE

7643
04:14:05,097 --> 04:14:06,398
DIAGNOSED OTHER PEOPLE.

7644
04:14:06,398 --> 04:14:09,501
SO AGAIN, SANKOFA HAS BEEN

7645
04:14:09,501 --> 04:14:11,269
EXTREMELY HELPFUL TO ME.

7646
04:14:11,269 --> 04:14:12,671
SPREADING INFORMATION IN THE

7647
04:14:12,671 --> 04:14:16,441
BLACK COMMUNITY IS SO IMPORTANT,

7648
04:14:16,441 --> 04:14:19,945
AND I HIGHLY RECOMMEND IT.

7649
04:14:19,945 --> 04:14:21,780
>> SO DIANE IS ONE OF MANY

7650
04:14:21,780 --> 04:14:26,084
STORIES THAT WE HAVE OF POWERFUL

7651
04:14:26,084 --> 04:14:30,789
SANKOFA FAMILY ADVOCATES.

7652
04:14:30,789 --> 04:14:31,656
WE CELEBRATE OUR FAMILIES ALL

7653
04:14:31,656 --> 04:14:33,525
THE TIME BUT CELEBRATION REALLY

7654
04:14:33,525 --> 04:14:34,092
IS NOT ENOUGH.

7655
04:14:34,092 --> 04:14:36,061
WE MUST AMPLIFY THE VOICES OF

7656
04:14:36,061 --> 04:14:37,596
THE DISABILITY ADVOCACY

7657
04:14:37,596 --> 04:14:39,764
MOVEMENT, ENSURING THE BIPOC

7658
04:14:39,764 --> 04:14:41,733
COMMUNITIES' PERSPECTIVES SHAPE

7659
04:14:41,733 --> 04:14:43,001
THE POLICIES AND PRACTICES THAT

7660
04:14:43,001 --> 04:14:44,402
WE USE.

7661
04:14:44,402 --> 04:14:45,604
BUILDING SUPPORTIVE NETWORKS AND

7662
04:14:45,604 --> 04:14:46,805
COMMUNITIES BECOMES ESSENTIAL AS

7663
04:14:46,805 --> 04:14:48,073
WE RECOGNIZE THE COLLECTIVE

7664
04:14:48,073 --> 04:14:49,541
ACTION IS THE CATALYST FOR

7665
04:14:49,541 --> 04:14:51,743
MEANINGFUL CHANGE.

7666
04:14:51,743 --> 04:14:53,145
THE CORE OF OUR COLLECTIVE

7667
04:14:53,145 --> 04:14:55,013
MISSION MUST LIE IN THE

7668
04:14:55,013 --> 04:14:57,549
COMMITMENT TO PROMOTING

7669
04:14:57,549 --> 04:14:58,416
INCLUSIVITY AND EQUITY IN

7670
04:14:58,416 --> 04:15:00,385
DISMANTLING SYSTEMIC BARRIERS

7671
04:15:00,385 --> 04:15:04,656
THAT PERPETUATE INJUSTICE.

7672
04:15:04,656 --> 04:15:06,158
SO AS WE DRAW NEAR TO THE

7673
04:15:06,158 --> 04:15:07,292
CONCLUSION OF OUR JOURNEY

7674
04:15:07,292 --> 04:15:08,493
TOGETHER, LET'S REFLECT ON THE

7675
04:15:08,493 --> 04:15:10,362
PATH THAT WE TRAVERSE, IN THE

7676
04:15:10,362 --> 04:15:10,929
DREAM OF THE ROAD THAT LIES

7677
04:15:10,929 --> 04:15:11,997
AHEAD.

7678
04:15:11,997 --> 04:15:14,099
I URGE EACH ONE OF YOU WHO ARE

7679
04:15:14,099 --> 04:15:16,001
CALLED TO ACTION TO START AND

7680
04:15:16,001 --> 04:15:17,469
STAND IN SO TAIRT WITH THE BLACK

7681
04:15:17,469 --> 04:15:19,337
COMMUNITIES TO ADVOCATE FIERCELY

7682
04:15:19,337 --> 04:15:21,339
FOR EQUITY INJUSTICE AND TO

7683
04:15:21,339 --> 04:15:22,307
CHAMPION INCLUSIVITY IN EVERY

7684
04:15:22,307 --> 04:15:23,708
FACET OF SOCIETY.

7685
04:15:23,708 --> 04:15:25,477
THE DISPARITIES THAT WE SEE IN

7686
04:15:25,477 --> 04:15:27,913
DIAGNOSIS AND ACCESS ARE RED

7687
04:15:27,913 --> 04:15:31,216
FLAGS FOR THE EFFECTS OF

7688
04:15:31,216 --> 04:15:34,386
SYSTEMIC RACISM, SEXISM, ABLEISM

7689
04:15:34,386 --> 04:15:37,389
AND EVEN MORE AND THE

7690
04:15:37,389 --> 04:15:38,657
INTERSECTIONALITY OF OPPRESSED

7691
04:15:38,657 --> 04:15:39,758
GROUPS AND THUS TO CREATE CHANGE

7692
04:15:39,758 --> 04:15:41,426
WE MUST TAKE A LONG HARD LOOK IN

7693
04:15:41,426 --> 04:15:43,195
THE MIRROR AND THINK ABOUT HOW

7694
04:15:43,195 --> 04:15:45,030
OUR INSTITUTIONS AND PERSONAL

7695
04:15:45,030 --> 04:15:47,999
ATTITUDES HAVE FOSTERED AND

7696
04:15:47,999 --> 04:15:50,869
PERPETUATED THESE INEQUITABLE

7697
04:15:50,869 --> 04:15:51,436
SYSTEMS THAT EXIST TODAY.

7698
04:15:51,436 --> 04:15:52,938
WE MUST LOOK FOR CHANGE TO

7699
04:15:52,938 --> 04:15:55,440
CURRENT POLICIES AND FRAKESS ALL

7700
04:15:55,440 --> 04:15:57,542
LEVEL THE WHICH I HEAR YOU'RE

7701
04:15:57,542 --> 04:15:58,643
DOING THESE THINGS I'M EXCITE

7702
04:15:58,643 --> 04:16:00,278
TODAY SAY, SO REALLY LOOK AT HOW

7703
04:16:00,278 --> 04:16:02,113
TO BE ABLE TO ACCESS CARE SO

7704
04:16:02,113 --> 04:16:03,181
THAT IT IS NOT A FEAT BUT A

7705
04:16:03,181 --> 04:16:03,949
GIVEN RIGHT FOR EVERY PERSON

7706
04:16:03,949 --> 04:16:04,716
THAT IS IN NEED.

7707
04:16:04,716 --> 04:16:06,151
SO I THANK YOU VERY MUCH FOR

7708
04:16:06,151 --> 04:16:06,718
YOUR ENGAGEMENT AND YOUR

7709
04:16:06,718 --> 04:16:08,920
DEDICATION FOR CHANGE.

7710
04:16:08,920 --> 04:16:10,422
AND THIS IS HOW YOU CAN BE ABLE

7711
04:16:10,422 --> 04:16:12,424
TO REACH ME IF YOU'RE

7712
04:16:12,424 --> 04:16:13,225
INTERESTED, AND TOGETHER, YES,

7713
04:16:13,225 --> 04:16:15,594
WE CAN REDEFINE WHAT IT MEANS TO

7714
04:16:15,594 --> 04:16:15,827
BELONG.

7715
04:16:15,827 --> 04:16:18,563
THANK YOU.

7716
04:16:18,563 --> 04:16:20,165
>> THANK YOU SO MUCH,

7717
04:16:20,165 --> 04:16:20,465
DR. MORGAN.

7718
04:16:20,465 --> 04:16:22,367
APPRECIATE THAT PRESENTATION.

7719
04:16:22,367 --> 04:16:24,002
WE'LL TAKE ABOUT 10 MINUTES FOR

7720
04:16:24,002 --> 04:16:24,336
DISCUSSION.

7721
04:16:24,336 --> 04:16:26,304
I KNOW WE'RE SLIGHTLY BEHIND

7722
04:16:26,304 --> 04:16:27,339
SCHEDULE, BUT WE'LL TRY TO MAKE

7723
04:16:27,339 --> 04:16:29,841
UP THAT TIME THAT WAY.

7724
04:16:29,841 --> 04:16:32,210
SO SHELLI AND I CAN TAKE SOME

7725
04:16:32,210 --> 04:16:36,248
QUESTIONS.

7726
04:16:36,248 --> 04:16:36,448
JULIE?

7727
04:16:36,448 --> 04:16:37,882
>> I JUST HAD A QUICK
COMMENT.

7728
04:16:37,882 --> 04:16:41,086
SO IN A COUPLE OF THE DIFFERENT

7729
04:16:41,086 --> 04:16:41,686
PRESENTATIONS, BY THE WAY, ALL

7730
04:16:41,686 --> 04:16:42,387
THE PRESENTATIONS WERE

7731
04:16:42,387 --> 04:16:43,588
EXCELLENT, SO THANK YOU,

7732
04:16:43,588 --> 04:16:45,457
EVERYBODY, FOR COMING HERE AND

7733
04:16:45,457 --> 04:16:46,057
TELLING US ABOUT THE WORK THAT

7734
04:16:46,057 --> 04:16:47,225
YOU'RE DOING AND WHAT'S GOING ON

7735
04:16:47,225 --> 04:16:48,660
IN YOUR DIFFERENT GROUPS OR

7736
04:16:48,660 --> 04:16:50,061
AGENCIES.

7737
04:16:50,061 --> 04:16:51,229
SOMETHING THAT CAME UP A COUPLE

7738
04:16:51,229 --> 04:16:52,264
OF TIMES IN THESE PRESENTATIONS

7739
04:16:52,264 --> 04:16:53,898
AND IN THE COMMENTS WAS THIS

7740
04:16:53,898 --> 04:16:56,835
IDEA OF THE HIDDEN CURRICULUM OF

7741
04:16:56,835 --> 04:16:57,736
ADULT SERVICES AND HOW HARD THAT

7742
04:16:57,736 --> 04:16:58,203
IS TO NAVIGATE.

7743
04:16:58,203 --> 04:17:00,905
SO I JUST WANTED TO LET YOU ALL

7744
04:17:00,905 --> 04:17:02,540
KNOW ABOUT A NEW RESOURCE THAT

7745
04:17:02,540 --> 04:17:03,441
IS GOING TO BE AVAILABLE THROUGH

7746
04:17:03,441 --> 04:17:06,311
OUR VANDERBILT UCCED VERY SOON,

7747
04:17:06,311 --> 04:17:08,179
WITHIN THE NEXT COUPLE MONTHS.

7748
04:17:08,179 --> 04:17:09,714
WE'VE DEVELOPED A 12-WEEK

7749
04:17:09,714 --> 04:17:10,749
PROGRAM THAT TEACHES ABOUT THE

7750
04:17:10,749 --> 04:17:12,584
ADULT SERVICE SYSTEM.

7751
04:17:12,584 --> 04:17:13,818
EACH WEEK GOES THROUGH A

7752
04:17:13,818 --> 04:17:14,552
DIFFERENT PIECE OF THE ADULT

7753
04:17:14,552 --> 04:17:17,322
SERVICE SYSTEM, WITH A REAL

7754
04:17:17,322 --> 04:17:18,957
FOCUS ON HOW ALL THE DIFFERENT

7755
04:17:18,957 --> 04:17:20,225
PIECES FIT TOGETHER AND HOW DO

7756
04:17:20,225 --> 04:17:21,226
YOU THINK ABOUT WHICH SERVICES

7757
04:17:21,226 --> 04:17:22,594
AND SUPPORTS AS A FAMILY

7758
04:17:22,594 --> 04:17:23,795
CAREGIVER ARE GOING TO BE THE

7759
04:17:23,795 --> 04:17:25,063
BEST FIT FOR YOUR SON OUR

7760
04:17:25,063 --> 04:17:25,330
DAUGHTER.

7761
04:17:25,330 --> 04:17:28,333
SO WE'VE BEEN WO WORKING ON THIS

7762
04:17:28,333 --> 04:17:28,967
FOR A WHILE.

7763
04:17:28,967 --> 04:17:30,969
WE'RE JUST WRAPPING UP A LARGE

7764
04:17:30,969 --> 04:17:32,170
RANDOMIZED CONTROL TRIAL WHERE

7765
04:17:32,170 --> 04:17:34,239
WE'VE TESTED OUT THIS CURRICULUM

7766
04:17:34,239 --> 04:17:36,107
IN THREE DIFFERENT STATES,

7767
04:17:36,107 --> 04:17:36,608
WISCONSIN, TENNESSEE AND

7768
04:17:36,608 --> 04:17:37,442
ILLINOIS, AND IT SEEMS TO BE

7769
04:17:37,442 --> 04:17:37,776
HELPFUL.

7770
04:17:37,776 --> 04:17:42,580
FAMILY CARE IMIFERS ARE CAREGIVG

7771
04:17:42,580 --> 04:17:45,183
THAT THEY KNOW MORE, IN FACT,

7772
04:17:45,183 --> 04:17:46,384
THEY DON'T REPORT THIS, WE TEST

7773
04:17:46,384 --> 04:17:46,718
THEM.

7774
04:17:46,718 --> 04:17:48,520
WE ACTUALLY GIVE THEM A MULTIPLE

7775
04:17:48,520 --> 04:17:50,055
CHOICE TEST AND THEY KNOW MUCH

7776
04:17:50,055 --> 04:17:51,790
MORE ABOUT ADULT SERVICES AFTER

7777
04:17:51,790 --> 04:17:55,327
TAKING THE PROGRAM AND WE'VE

7778
04:17:55,327 --> 04:17:56,294
EVEN SEEN EVIDENCE THAT IT

7779
04:17:56,294 --> 04:17:57,729
ACTUALLY IMPROVES SERVICE ACCESS

7780
04:17:57,729 --> 04:17:59,130
RELATIVE TO FAMILIES WHO ARE

7781
04:17:59,130 --> 04:18:01,333
BEGIN ALL THE INFORMATION IN A

7782
04:18:01,333 --> 04:18:01,666
BINDER.

7783
04:18:01,666 --> 04:18:04,169
SO WE ARE PACKAGING IT RIGHT NOW

7784
04:18:04,169 --> 04:18:05,303
PUTTING TOGETHER MAKING SURE IT

7785
04:18:05,303 --> 04:18:06,738
WILL BE AS EASILY ACCESSIBLE AS

7786
04:18:06,738 --> 04:18:07,839
POSSIBLE.

7787
04:18:07,839 --> 04:18:09,374
BUT OUR ATTEMPT IS TO TAKE THIS

7788
04:18:09,374 --> 04:18:10,775
HIDDEN CURRICULUM AND TRY TO

7789
04:18:10,775 --> 04:18:12,110
MAKE IT MORE TRANSPARENT, TRY TO

7790
04:18:12,110 --> 04:18:12,877
MAKE IT CLEARER.

7791
04:18:12,877 --> 04:18:16,081
IT'S NOT EASY, THE MATERIAL IS

7792
04:18:16,081 --> 04:18:17,082
NOT EASY AND IT'S A LOT, BUT WE

7793
04:18:17,082 --> 04:18:19,250
AT LEAST WANT PEOPLE TO KNOW

7794
04:18:19,250 --> 04:18:20,785
WHAT THE RANGES OF OPTIONS ARE

7795
04:18:20,785 --> 04:18:22,687
OUT THERE FOR THEM AND THEN HELP

7796
04:18:22,687 --> 04:18:23,788
CONNECT THEM TO THE PEOPLE THAT

7797
04:18:23,788 --> 04:18:24,956
CAN HELP THEM TAKE THE NEXT

7798
04:18:24,956 --> 04:18:25,523
STEP.

7799
04:18:25,523 --> 04:18:27,225
>> THANK YOU SO MUCH.

7800
04:18:27,225 --> 04:18:28,093
PLEASE DO SEND THAT INFORMATION

7801
04:18:28,093 --> 04:18:28,960
TO US, TOO.

7802
04:18:28,960 --> 04:18:30,362
WE'LL PUT IT IN OUR NEWSLETTER

7803
04:18:30,362 --> 04:18:31,262
WHEN IT COMES OUT.

7804
04:18:31,262 --> 04:18:32,530
I THINK IT WOULD BE RELEVANT TO

7805
04:18:32,530 --> 04:18:33,131
A LOT OF PEOPLE.

7806
04:18:33,131 --> 04:18:34,532
THANK YOU SO MUCH.

7807
04:18:34,532 --> 04:18:36,868
AND I AGREE THE PRESENTATIONS

7808
04:18:36,868 --> 04:18:37,235
WERE EXCELLENT.

7809
04:18:37,235 --> 04:18:40,372
AGAIN, THANK YOU.

7810
04:18:40,372 --> 04:18:40,638
ANYONE --

7811
04:18:40,638 --> 04:18:42,674
>> DENA HAS HER HAND UP
ONLINE.

7812
04:18:42,674 --> 04:18:44,376
>> GO AHEAD.

7813
04:18:44,376 --> 04:18:45,009
>> YES.

7814
04:18:45,009 --> 04:18:49,080
I SECOND ALL OF THOSE, KUDOS FOR

7815
04:18:49,080 --> 04:18:49,914
GREAT PRESENTATIONS.

7816
04:18:49,914 --> 04:18:54,819
I DID JUST WANT TO BRING UP A

7817
04:18:54,819 --> 04:18:56,788
PERSONAL EXPERIENCE OF MINE.

7818
04:18:56,788 --> 04:18:58,623
MANY YEARS AGO, IN A STATE THAT

7819
04:18:58,623 --> 04:19:01,960
WILL REMAIN UNNAMED, I WAS IN

7820
04:19:01,960 --> 04:19:03,528
THE THROES OF OVERMEDICATION

7821
04:19:03,528 --> 04:19:05,997
FROM A MISDIAGNOSIS, AND I

7822
04:19:05,997 --> 04:19:07,532
APPROACHED AN ENTITY THAT SAYS

7823
04:19:07,532 --> 04:19:10,869
THAT THEY HELP PARENTS WITH

7824
04:19:10,869 --> 04:19:12,804
DISABILITIES, BUT MY EXPRESSION

7825
04:19:12,804 --> 04:19:16,541
OF BEING OVERWHELM WAS SO

7826
04:19:16,541 --> 04:19:18,643
DRAMATIC THAT EVERY AGENCY I

7827
04:19:18,643 --> 04:19:19,310
APPROACHED FOR SUPPORT TURNED ME

7828
04:19:19,310 --> 04:19:21,446
DOWN.

7829
04:19:21,446 --> 04:19:24,716
AND I WOULD ARGUE THAT THAT IS

7830
04:19:24,716 --> 04:19:26,584
THE PARENT WHO MOST NEEDS THESE

7831
04:19:26,584 --> 04:19:30,655
KINDS OF WRAP-AROUND SERVICES.

7832
04:19:30,655 --> 04:19:32,390
AND WHILE MANY PARENTS INCLUDING

7833
04:19:32,390 --> 04:19:34,159
THESE HIGH NEEDS PARENTS CAN

7834
04:19:34,159 --> 04:19:36,161
BENEFIT FROM A TRAINING PROGRAM

7835
04:19:36,161 --> 04:19:37,462
LIKE JULIE'S, TO KNOW THEIR

7836
04:19:37,462 --> 04:19:41,633
RIGHTS AND THEIR PRIVILEGES,

7837
04:19:41,633 --> 04:19:42,867
THAT DOESN'T NECESSARILY ALWAYS

7838
04:19:42,867 --> 04:19:44,302
EQUATE TO THEM BEING ABLE TO

7839
04:19:44,302 --> 04:19:46,471
ATTEND A MEETING WHERE THERE'S A

7840
04:19:46,471 --> 04:19:47,672
POWER DYNAMIC IN PLAY.

7841
04:19:47,672 --> 04:19:50,875
I HAD AS A SOCIAL WORKER, I

7842
04:19:50,875 --> 04:19:52,076
COACHED MY PARENTS, I GOT THEM

7843
04:19:52,076 --> 04:19:53,378
READY, I SENT THEM TO THE MING,

7844
04:19:53,378 --> 04:19:57,282
TMEETING, THEY SIGNED AWAY THEIR

7845
04:19:57,282 --> 04:19:58,683
RIGHTS BECAUSE THEY WERE SO

7846
04:19:58,683 --> 04:19:59,818
OVERWHELMED WITH BEING TOLD THEY

7847
04:19:59,818 --> 04:20:00,919
HAD TO DO SOMETHING.

7848
04:20:00,919 --> 04:20:02,487
SO I JUST HOPE AS WE'RE CREATING

7849
04:20:02,487 --> 04:20:05,223
ALL OF THESE OPTIONS, THAT WE DO

7850
04:20:05,223 --> 04:20:07,225
RECOGNIZE THAT MAYBE 10% OF THE

7851
04:20:07,225 --> 04:20:09,360
PARENTS ARE GOING TO HAVE

7852
04:20:09,360 --> 04:20:11,696
SUSTAINED NEEDS, NOT A ONE-TIME

7853
04:20:11,696 --> 04:20:13,097
PROBLEM SOLVING ISSUE.

7854
04:20:13,097 --> 04:20:14,732
I ALSO WANTED TO CONVEY THAT

7855
04:20:14,732 --> 04:20:18,603
WHILE I BELIEVE IN SUPPORTED

7856
04:20:18,603 --> 04:20:21,539
DECISION-MAKING, MY PUBLIC HIGH

7857
04:20:21,539 --> 04:20:22,874
SCHOOL HAD CHILDREN TURNING 18

7858
04:20:22,874 --> 04:20:24,409
SIGN AWAY THEIR IEPs IF THEY

7859
04:20:24,409 --> 04:20:27,579
WEREN'T UNDER A GUARDIANSHIP.

7860
04:20:27,579 --> 04:20:31,182
AND TO DUE PROCESS THAT AT AGE

7861
04:20:31,182 --> 04:20:32,851
18 WOULD HAVE CONSUMED THE

7862
04:20:32,851 --> 04:20:34,052
BALANCE OF THE CHILD'S

7863
04:20:34,052 --> 04:20:34,619
EDUCATIONAL EXPERIENCE.

7864
04:20:34,619 --> 04:20:37,455
IT WOULD JUST NOT HAVE WORKED.

7865
04:20:37,455 --> 04:20:39,557
AND IN A PRIOR SCHOOL SETTING,

7866
04:20:39,557 --> 04:20:41,759
MY SON WAS PUSHED OFF OF

7867
04:20:41,759 --> 04:20:43,294
DIPLOMA-SEEKING TRACK IN A

7868
04:20:43,294 --> 04:20:44,696
UNILATERAL DECISION BUT AGAIN,

7869
04:20:44,696 --> 04:20:46,498
HE WAS ALREADY 18, AND I KNEW

7870
04:20:46,498 --> 04:20:48,566
THAT IF I DUE PROCESSED IT, HE

7871
04:20:48,566 --> 04:20:49,868
WOULD STILL NOT BE ABLE TO

7872
04:20:49,868 --> 04:20:51,970
GRADUATE.

7873
04:20:51,970 --> 04:20:53,371
AND HE WASN'T A HIGH BEHAVIORAL

7874
04:20:53,371 --> 04:20:55,907
NEEDS STUDENT, HE WAS A HIGH

7875
04:20:55,907 --> 04:20:56,674
ACADEMIC NEEDS STUDENT AND THEY

7876
04:20:56,674 --> 04:20:58,243
DIDN'T WANT TO ASSIGN A

7877
04:20:58,243 --> 04:20:59,978
ONE-ON-ONE STAFF MEMBER TO AN

7878
04:20:59,978 --> 04:21:01,713
INDIVIDUAL WHO JUST NEEDED HELP

7879
04:21:01,713 --> 04:21:02,614
WITH LEARNING DISABILITIES,

7880
04:21:02,614 --> 04:21:04,282
WHICH WAS WHAT THE GLOBAL

7881
04:21:04,282 --> 04:21:05,149
PROBLEM WAS.

7882
04:21:05,149 --> 04:21:12,924
SO I JUST WANT TO GIVE THOSE AS

7883
04:21:12,924 --> 04:21:14,459
CAUTIONARY TALES, WHERE THERE

7884
04:21:14,459 --> 04:21:16,327
CAN BE CIRCUMSTANCES WHERE

7885
04:21:16,327 --> 04:21:17,195
PARENTS NEED MORE THAN JUST THE

7886
04:21:17,195 --> 04:21:18,463
SUPPORT OF A CLASS, WHICH IS

7887
04:21:18,463 --> 04:21:19,864
VERY GOOD AT HELPING US KNOW OUR

7888
04:21:19,864 --> 04:21:21,499
RIGHTS BUT MAY NOT BE

7889
04:21:21,499 --> 04:21:22,834
TRANSLATABLE, THEY MAY NEED A

7890
04:21:22,834 --> 04:21:24,602
SHADOWED PERSON, SOMEONE WITH

7891
04:21:24,602 --> 04:21:25,703
THEM TO OPEN THOSE THINGS UP.

7892
04:21:25,703 --> 04:21:29,741
AND THEN SECOND TO THAT, WE NEED

7893
04:21:29,741 --> 04:21:31,309
TO BE ABLE TO GET PARENTS'

7894
04:21:31,309 --> 04:21:33,378
RIGHTS BACK MORE QUICKLY THAN

7895
04:21:33,378 --> 04:21:34,379
THE PROTOCOL OF THE DUE PROCESS

7896
04:21:34,379 --> 04:21:36,347
WHEN A SCHOOL IS CLEARLY TAKING

7897
04:21:36,347 --> 04:21:37,749
ADVANTAGE OF A VULNERABLE PARENT

7898
04:21:37,749 --> 04:21:40,985
OR VULNERABLE STUDENT.

7899
04:21:40,985 --> 04:21:42,086
SO I JUST WANTED TO SHARE THAT.

7900
04:21:42,086 --> 04:21:51,262
THANK YOU.

7901
04:21:51,262 --> 04:21:53,498
>> BRYAN IS ONLINE AS
WELL,

7902
04:21:53,498 --> 04:21:53,698
SUSAN.

7903
04:21:53,698 --> 04:21:53,965
>> GREAT.

7904
04:21:53,965 --> 04:21:55,133
GO AHEAD.

7905
04:21:55,133 --> 04:21:57,735
>> THANK YOU VERY MUCH FOR
THOSE

7906
04:21:57,735 --> 04:21:58,069
PRESENTATIONS.

7907
04:21:58,069 --> 04:21:59,837
I WANTED TO DIG INTO A LITTLE

7908
04:21:59,837 --> 04:22:02,273
BIT ABOUT WHAT WAS SPOKEN ABOUT

7909
04:22:02,273 --> 04:22:03,808
EARLIER WITH THE AUGMENTED

7910
04:22:03,808 --> 04:22:06,678
SOCIAL SUPPORT NETWORKS.

7911
04:22:06,678 --> 04:22:08,780
AND SEE IF MAYBE THE SPEAKER

7912
04:22:08,780 --> 04:22:11,783
COULD EXPAND A LITTLE BIT AS TO

7913
04:22:11,783 --> 04:22:12,817
WHETHER OR NOT THEY HAD SOME

7914
04:22:12,817 --> 04:22:15,587
DIRECT EXPERIENCE WITH OW TO

7915
04:22:15,587 --> 04:22:16,888
ESTABLISH AND EXPAND THOSE

7916
04:22:16,888 --> 04:22:19,857
SOCIAL SUPPORT NETWORKS OR IF

7917
04:22:19,857 --> 04:22:21,392
THERE WAS SOME EXAMPLES THAT WE

7918
04:22:21,392 --> 04:22:23,161
COULD LOOK AT AND EVALUATE IN

7919
04:22:23,161 --> 04:22:28,199
TERMS OF THAT AS A POLICY

7920
04:22:28,199 --> 04:22:31,402
APPROACH.

7921
04:22:31,402 --> 04:22:34,138
>> SO WOULD ANY OF OUR
SPEAKERS

7922
04:22:34,138 --> 04:22:36,374
LIKE TO ADDRESS THAT?

7923
04:22:36,374 --> 04:22:39,177
>> I'M NOT SURE IF THE
SPEAKER

7924
04:22:39,177 --> 04:22:40,845
WHO TALKED ABOUT THAT IS STILL

7925
04:22:40,845 --> 04:22:42,380
ONLINE, BUT I'M HAPPY TO SHARE

7926
04:22:42,380 --> 04:22:46,851
WHAT I KNOW.

7927
04:22:46,851 --> 04:22:49,287
WHICH MAY BE NOT AS MUCH AS HER.

7928
04:22:49,287 --> 04:22:50,622
BUT I KNOW -- AND I THINK IT'S

7929
04:22:50,622 --> 04:22:53,224
BEEN MENTIONED UNDER INDIVIDUALS

7930
04:22:53,224 --> 04:22:54,659
WITH DISABILITIES EDUCATION ACT,

7931
04:22:54,659 --> 04:22:58,529
THERE IS THE PARENT TRAINING

7932
04:22:58,529 --> 04:22:59,163
INFORMATION CENTERS WHICH IS A

7933
04:22:59,163 --> 04:23:00,832
FAMILY TO FAMILY PEER SUPPORT

7934
04:23:00,832 --> 04:23:03,534
MODEL THAT ARE FUNDED IN EVERY

7935
04:23:03,534 --> 04:23:05,236
STATE AND TERRITORY, AND I DON'T

7936
04:23:05,236 --> 04:23:06,638
KNOW IF KRISTI IS STILL ONLINE

7937
04:23:06,638 --> 04:23:09,607
AND COULD SPEAK A LITTLE BIT TO

7938
04:23:09,607 --> 04:23:10,908
THOSE PARENT AND TRAINING

7939
04:23:10,908 --> 04:23:13,244
INFORMATION CENTERS.

7940
04:23:13,244 --> 04:23:14,879
UNDER THE MENTAL HEALTH PROGRAM,

7941
04:23:14,879 --> 04:23:18,049
THERE ARE FAMILY TO FAMILY

7942
04:23:18,049 --> 04:23:21,786
PROGRAMS AS WELL WHICH DO -- I

7943
04:23:21,786 --> 04:23:23,354
SEE CHRISTINA IS ON SO MAYBE SHE

7944
04:23:23,354 --> 04:23:25,556
CAN SPEAK MORE ABOUT THAT.

7945
04:23:25,556 --> 04:23:28,059
BUT I ALSO JUST WANTED TO

7946
04:23:28,059 --> 04:23:30,928
MENTION THAT MANY, MANY YEARS

7947
04:23:30,928 --> 04:23:32,030
AGO, PROBABLY 15, 16, 17 YEARS

7948
04:23:32,030 --> 04:23:34,432
AGO, WE DID FUND FAMILY SUPPORT

7949
04:23:34,432 --> 04:23:36,668
360s UNDER THAT SAME IDEA OF

7950
04:23:36,668 --> 04:23:38,870
WHAT CHRISTINA WAS TALKING ABOUT

7951
04:23:38,870 --> 04:23:40,705
IN TERMS OF HELPING FAMILIES GET

7952
04:23:40,705 --> 04:23:43,107
TO FAMILY NAVIGATORS, PEERS THAT

7953
04:23:43,107 --> 04:23:44,342
HAVE BEEN THROUGH THAT PEERNS,

7954
04:23:44,342 --> 04:23:46,544
TO HELP THEM NAVIGATE THROUGH

7955
04:23:46,544 --> 04:23:47,845
ANTISWORD OF WHAT DENA WAS

7956
04:23:47,845 --> 04:23:49,080
TALKING ABOUT AS WELL, SORT OF

7957
04:23:49,080 --> 04:23:52,350
THAT ONGOING SUPPORT OF PEER TO

7958
04:23:52,350 --> 04:23:53,885
PEERS -- OR PEERS THAT CAN

7959
04:23:53,885 --> 04:23:55,453
SUPPORT THEIR PEERS IN INFORM

7960
04:23:55,453 --> 04:23:56,554
GATING SYSTEMS, DEALING WITH

7961
04:23:56,554 --> 04:23:56,988
ISSUES.

7962
04:23:56,988 --> 04:23:58,990
I THINK THERE ARE A LOT OF

7963
04:23:58,990 --> 04:23:59,590
SUPPORTS OUT THERE LIKE THAT.

7964
04:23:59,590 --> 04:24:02,193
IT'S THE CHALLENGES IS FINDING

7965
04:24:02,193 --> 04:24:02,393
THOSE.

7966
04:24:02,393 --> 04:24:03,494
WE HEAR ABOUT THAT A LOT.

7967
04:24:03,494 --> 04:24:05,163
A LOT OF PEOPLE JUST AREN'T

7968
04:24:05,163 --> 04:24:05,830
AWARE OF THE RESOURCES THAT ARE

7969
04:24:05,830 --> 04:24:06,164
OUT THERE.

7970
04:24:06,164 --> 04:24:07,598
BUT I'LL TURN IT OVER TO

7971
04:24:07,598 --> 04:24:07,932
CHRISTINA.

7972
04:24:07,932 --> 04:24:08,733
>> HI.

7973
04:24:08,733 --> 04:24:10,601
CAN YOU -- WOULD YOU MIND

7974
04:24:10,601 --> 04:24:11,502
CLARIFYING YOUR QUESTION, JUST

7975
04:24:11,502 --> 04:24:13,404
SO -- I JUST WANT TO MAKE SURE I

7976
04:24:13,404 --> 04:24:13,938
GO IN THE RIGHT DIRECTION.

7977
04:24:13,938 --> 04:24:16,441
I'M A TALKER SO I CAN GO ALL

7978
04:24:16,441 --> 04:24:17,341
SORTS OF WAYS.

7979
04:24:17,341 --> 04:24:18,910
YOU WERE ASKING ABOUT THE FAMILY

7980
04:24:18,910 --> 04:24:20,545
SUPPORT NAVIGATOR PROGRAMS?

7981
04:24:20,545 --> 04:24:20,745
OR --

7982
04:24:20,745 --> 04:24:22,280
>> WELL, NO, I WAS
ACTUALLY

7983
04:24:22,280 --> 04:24:24,849
MORE -- I WAS LOOKING FOR AN

7984
04:24:24,849 --> 04:24:26,150
EXPANSION OF YOUR COMMENT ABOUT

7985
04:24:26,150 --> 04:24:28,219
AUGMENTED SOCIAL SUPPORT

7986
04:24:28,219 --> 04:24:29,087
NETWORKS, AND IT WAS --

7987
04:24:29,087 --> 04:24:31,022
>> INFORMAL -- AT FIRST I
WAS

7988
04:24:31,022 --> 04:24:32,657
LIKE IS HE ASKING ABOUT AACs?

7989
04:24:32,657 --> 04:24:33,324
YES.

7990
04:24:33,324 --> 04:24:35,126
INFORMAL SOCIAL SUPPORT

7991
04:24:35,126 --> 04:24:35,993
NETWORKS, I'VE PUBLISHED A

7992
04:24:35,993 --> 04:24:37,395
SERIES OF PAPERS ON -- I WAS

7993
04:24:37,395 --> 04:24:40,164
REALLY INTERESTED IN SOCIAL

7994
04:24:40,164 --> 04:24:40,765
SUPPORT, HOW DOES IT IMPACT

7995
04:24:40,765 --> 04:24:42,133
QUALITY OF LIFE, CAREGIVER

7996
04:24:42,133 --> 04:24:44,435
BURDEN, THOSE ASPECTS.

7997
04:24:44,435 --> 04:24:45,970
GREAT QUESTION.

7998
04:24:45,970 --> 04:24:48,873
WHAT WE'RE FINDING IS FORMAL

7999
04:24:48,873 --> 04:24:50,374
SOCIAL SUPPORT CAN BE GREAT WHEN

8000
04:24:50,374 --> 04:24:52,043
THEY'RE OFFERED, WHEN THEY'RE

8001
04:24:52,043 --> 04:24:53,845
AVAILABLE, WHEN THEY'RE

8002
04:24:53,845 --> 04:24:55,146
ACCESSIBLE, WHEN PEOPLE CAN

8003
04:24:55,146 --> 04:24:56,681
AFFORD THEM, THOSE KIND OF

8004
04:24:56,681 --> 04:24:57,982
THINGS, OR WHEN THERE'S A PAYOR

8005
04:24:57,982 --> 04:24:59,117
FOR THEM.

8006
04:24:59,117 --> 04:24:59,984
BUT THE INFORMAL SOCIAL SUPPORT

8007
04:24:59,984 --> 04:25:01,119
NETWORKS CAN BE REALLY HELPFUL

8008
04:25:01,119 --> 04:25:04,088
AND A LOT OF MY WORK FOCUSES ON

8009
04:25:04,088 --> 04:25:06,190
AGING FAMILY CAREGIVERS.

8010
04:25:06,190 --> 04:25:07,592
SO MANY OF THOSE SUPPORT

8011
04:25:07,592 --> 04:25:09,026
NETWORKS, PEOPLE HAVE GONE TO

8012
04:25:09,026 --> 04:25:11,362
SIBLINGS, THEY'VE GOT -- FAMILY

8013
04:25:11,362 --> 04:25:12,230
CAREGIVERS HAVE GONE TO

8014
04:25:12,230 --> 04:25:13,431
SIBLINGS, THEY'VE GONE TO

8015
04:25:13,431 --> 04:25:14,832
IN-LAWS, THEY'VE GONE TO

8016
04:25:14,832 --> 04:25:16,434
NEIGHBORS, OVER DECADES.

8017
04:25:16,434 --> 04:25:18,536
AND SO WHAT OFTENTIMES THEY'RE

8018
04:25:18,536 --> 04:25:21,105
TALKING ABOUT IS THAT THEY'VE

8019
04:25:21,105 --> 04:25:23,374
REALLY MAXED OUT THEIR INFORMAL

8020
04:25:23,374 --> 04:25:24,008
SOCIAL SUPPORT NETWORKS.

8021
04:25:24,008 --> 04:25:27,245
THOSE NETWORKS, THEY'RE TIRED,

8022
04:25:27,245 --> 04:25:28,646
THEY'RE MAYBE NOT UNDERSTANDING

8023
04:25:28,646 --> 04:25:30,515
AUTISM IN ADULTHOOD, THOSE KIND

8024
04:25:30,515 --> 04:25:30,782
OF THINGS.

8025
04:25:30,782 --> 04:25:33,618
BUT ANYTHING THAT WE CAN DO

8026
04:25:33,618 --> 04:25:34,719
PERHAPS IN A FORMALIZED MANNER

8027
04:25:34,719 --> 04:25:37,922
CAN BE REALLY HELPFUL BECAUSE

8028
04:25:37,922 --> 04:25:38,589
THERE'S ONLY -- AND I'D LIKE TO

8029
04:25:38,589 --> 04:25:39,891
IMAGINE THIS WORLD THAT WE CAN

8030
04:25:39,891 --> 04:25:42,426
JUST TOTALLY REVAMP ALL THE

8031
04:25:42,426 --> 04:25:43,861
SERVICES AND I'M HOPING THAT IT

8032
04:25:43,861 --> 04:25:45,096
DOES GO THAT WAY.

8033
04:25:45,096 --> 04:25:49,467
BUT IF WE CAN REVAMP FORMAL

8034
04:25:49,467 --> 04:25:51,602
SOCIAL SUPPORTS SIMULTANEOUS TO

8035
04:25:51,602 --> 04:25:52,804
WAYS TO ALLOW INDIVIDUALS TO

8036
04:25:52,804 --> 04:25:54,205
ACCESS INFORMAL SOCIAL SUPPORT

8037
04:25:54,205 --> 04:25:56,808
NETWORKS, SO THOSE UNPAID

8038
04:25:56,808 --> 04:26:00,178
NETWORKS, BECAUSE YOU GUYS CAN'T

8039
04:26:00,178 --> 04:26:02,413
SEE ME, I'M PREGNANT WITH MY

8040
04:26:02,413 --> 04:26:05,082
THIRD BABY, BUT MY INFORMAL

8041
04:26:05,082 --> 04:26:06,384
SOCIAL SUPPORT NETWORKS HAVE

8042
04:26:06,384 --> 04:26:08,452
BEEN SUPER HELPFUL, BEING ABLE

8043
04:26:08,452 --> 04:26:09,554
TO CALL MY NEIGHBOR DOWN THE

8044
04:26:09,554 --> 04:26:11,522
STREET WHEN I NEED SOMEBODY TO

8045
04:26:11,522 --> 04:26:12,557
COME OVER FOR FIVE MINUTES SO I

8046
04:26:12,557 --> 04:26:15,827
CAN DO X, Y OR Z, OR MY PARENT

8047
04:26:15,827 --> 04:26:17,361
BEING ABLE TO HELP ME JUGGLE MY

8048
04:26:17,361 --> 04:26:18,529
WORK SCHEDULE AND THESE KIND OF

8049
04:26:18,529 --> 04:26:20,498
DIFFERENT WORK TIMES THAT I'M

8050
04:26:20,498 --> 04:26:21,799
WORKING, SO IF WE THINK ABOUT

8051
04:26:21,799 --> 04:26:23,467
THAT IN THE CONTEXT OF FAMILY

8052
04:26:23,467 --> 04:26:24,468
CAREGIVING ACROSS THE LIFESPAN

8053
04:26:24,468 --> 04:26:26,003
SO PEOPLE WHO ARE REALLY

8054
04:26:26,003 --> 04:26:27,905
ENDURING CAREGIVERS AND THEN WHO

8055
04:26:27,905 --> 04:26:30,975
MIGHT BE DOING OTHER FORMALIZED

8056
04:26:30,975 --> 04:26:32,944
INFORMAL CAREGIVING AS WELL

8057
04:26:32,944 --> 04:26:34,545
WITHIN THEIR HOMES TO A SPOUSE

8058
04:26:34,545 --> 04:26:36,280
AND SO FORTH, ANYTHING WE CAN DO

8059
04:26:36,280 --> 04:26:38,783
FORMALLY AND PROFESSIONALLY TO

8060
04:26:38,783 --> 04:26:39,350
AUGMENT THOSE.

8061
04:26:39,350 --> 04:26:42,353
SOME OF THE WORK I'VE DONE VERY

8062
04:26:42,353 --> 04:26:43,554
INFORMALLY THROUGH MY WORK IN

8063
04:26:43,554 --> 04:26:44,989
THE SCHOOLS IS I WORK CERTAINLY

8064
04:26:44,989 --> 04:26:46,724
WITH INDIVIDUALS WITH AUTISM BUT

8065
04:26:46,724 --> 04:26:48,593
OTHER POPULATIONS AS WELL AND

8066
04:26:48,593 --> 04:26:50,194
WE'RE SEEING A LOT OF EARLY

8067
04:26:50,194 --> 04:26:51,162
ONSET SCHIZOPHRENIA, SOMETIMES

8068
04:26:51,162 --> 04:26:55,333
WHAT WE WOULD CONSIDER PR PRODRL

8069
04:26:55,333 --> 04:26:56,400
SCHIZOPHRENIA AND PEOPLE ARE

8070
04:26:56,400 --> 04:26:57,902
LIKE -- I MEAN, THIS IS REALLY

8071
04:26:57,902 --> 04:26:59,203
TRAUMATIC, THIS IS REALLY HARD

8072
04:26:59,203 --> 04:27:00,905
FOR THESE FAMILIES SO I'M NOT

8073
04:27:00,905 --> 04:27:02,240
DRAWING COMMONALITIES TO AUTISM

8074
04:27:02,240 --> 04:27:04,208
BUT I'M GIVING THE EXAMPLE OF

8075
04:27:04,208 --> 04:27:07,345
CONNECTING PEOPLE WITH MAYBE

8076
04:27:07,345 --> 04:27:09,714
CERTAINLY FORMAL NETWORKS AND

8077
04:27:09,714 --> 04:27:11,048
CERTAINLY THOSE KIND OF ASPECTS

8078
04:27:11,048 --> 04:27:12,016
BUT SOMEBODY ELSE WHO MIGHT BE

8079
04:27:12,016 --> 04:27:13,784
ABLE TO UNDERSTAND.

8080
04:27:13,784 --> 04:27:14,318
SO A LOT CAN BE DONE EVEN

8081
04:27:14,318 --> 04:27:15,586
THROUGH -- I'M SEEING A LOT DONE

8082
04:27:15,586 --> 04:27:16,454
THROUGH FACEBOOK GROUPS.

8083
04:27:16,454 --> 04:27:20,358
LAST YEAR I DEVELOPED A TRAINING

8084
04:27:20,358 --> 04:27:22,960
FOR AN ORGANIZATION OUT IN

8085
04:27:22,960 --> 04:27:24,595
CALIFORNIA OF FAMILY CAREGIVERS

8086
04:27:24,595 --> 04:27:27,331
OF ADULTS WITH AUTISM AND OTHER

8087
04:27:27,331 --> 04:27:27,965
NEURODEVELOPMENTAL DISABILITIES

8088
04:27:27,965 --> 04:27:28,566
BUT EVEN TALKING ABOUT THESE

8089
04:27:28,566 --> 04:27:29,800
ASPECTS IN THERE IN THIS

8090
04:27:29,800 --> 04:27:33,537
TRAINING I DEVELOPED.

8091
04:27:33,537 --> 04:27:35,339
SO I GUESS IN SOME, LIKE IF I

8092
04:27:35,339 --> 04:27:36,974
WERE WORKING AS A SOCIAL WORKER,

8093
04:27:36,974 --> 04:27:40,378
I COULD WORK TO KIND OF HELP

8094
04:27:40,378 --> 04:27:41,746
PEOPLE AUGMENT WHAT THEY ALREADY

8095
04:27:41,746 --> 04:27:41,946
HAVE.

8096
04:27:41,946 --> 04:27:42,914
SOME OF THE FUNDING THAT I'VE

8097
04:27:42,914 --> 04:27:44,181
RECEIVED FROM MY OWN RESEARCH

8098
04:27:44,181 --> 04:27:45,883
HAS BEEN THROUGH MICHIGAN HEALTH

8099
04:27:45,883 --> 04:27:49,654
ENDOWMENT FUND HERE IN MICHIGAN,

8100
04:27:49,654 --> 04:27:50,655
AND IT'S REALLY INTERESTING AS

8101
04:27:50,655 --> 04:27:52,623
WE START TO THINK ABOUT THESE

8102
04:27:52,623 --> 04:27:54,492
BROADER NETWORKS AND THIS KIND

8103
04:27:54,492 --> 04:27:56,027
OF ECOLOGICAL SYSTEM IF YOU

8104
04:27:56,027 --> 04:27:57,561
WILL, WHERE DIFFERENT SUPPORTS

8105
04:27:57,561 --> 04:27:57,995
CAN COME FROM.

8106
04:27:57,995 --> 04:28:00,131
SO IF I CONTINUE TO CALL YOU AND

8107
04:28:00,131 --> 04:28:01,532
SAY, HEY, YOU KNOW, DR. BLOOMER,

8108
04:28:01,532 --> 04:28:03,301
I NEED HELP, I NEED HELP, I NEED

8109
04:28:03,301 --> 04:28:04,702
HELP, YOU'RE GOING TO PROBABLY

8110
04:28:04,702 --> 04:28:06,737
STOP PICKING UP MY CALL AS

8111
04:28:06,737 --> 04:28:08,272
FREQUENTLY OR AS

8112
04:28:08,272 --> 04:28:08,673
ENTHUSIASTICALLY.

8113
04:28:08,673 --> 04:28:10,508
BUT IF I GO TO YOU, AND YOU COME

8114
04:28:10,508 --> 04:28:13,444
TO ME, AND THEN THERE'S THIS

8115
04:28:13,444 --> 04:28:14,312
WHOLE OTHER NETWORK WHERE WE CAN

8116
04:28:14,312 --> 04:28:16,180
ALL KIND OF HELP EACH OTHER OUT

8117
04:28:16,180 --> 04:28:19,717
AND THEN WE AUGMENT AND HAVE

8118
04:28:19,717 --> 04:28:20,952
FORMAL NETWORKS AS WELL THAT

8119
04:28:20,952 --> 04:28:24,221
PEOPLE CAN ACTUALLY NAVIGATE

8120
04:28:24,221 --> 04:28:26,457
WITH SOME EASE AND UNDERSTAND,

8121
04:28:26,457 --> 04:28:27,658
AND I THINK ONE OF THE HARD

8122
04:28:27,658 --> 04:28:30,928
THINGS WITH THOSE FORMAL

8123
04:28:30,928 --> 04:28:32,196
NETWORKS, AGAIN, WE EXPECT THE

8124
04:28:32,196 --> 04:28:32,730
FAMILIES TO BE EXPERTS.

8125
04:28:32,730 --> 04:28:34,498
A LOT OF THE FAMILIES WILL COME

8126
04:28:34,498 --> 04:28:36,500
IN AND WHEN I'M CONSULTING ON

8127
04:28:36,500 --> 04:28:37,068
CASES NOW, THEY'LL TELL ME

8128
04:28:37,068 --> 04:28:37,368
EVERYTHING.

8129
04:28:37,368 --> 04:28:38,903
I'M LIKE, OH, MY GOSH, YOU JUST

8130
04:28:38,903 --> 04:28:41,339
DID MY WHOLE JOB BECAUSE YOU'VE

8131
04:28:41,339 --> 04:28:41,872
SPENT DECADES STUDYING IT.

8132
04:28:41,872 --> 04:28:43,007
AND SO ANYTHING WE CAN DO TO

8133
04:28:43,007 --> 04:28:44,408
KIND OF TAKE THE ONUS OFF THEM

8134
04:28:44,408 --> 04:28:47,311
BOTH IN KIND OF THOSE FORMAL

8135
04:28:47,311 --> 04:28:48,612
REALMS AS WELL AS THE INFORMAL

8136
04:28:48,612 --> 04:28:49,113
REALMS.

8137
04:28:49,113 --> 04:28:51,248
AND SOME OF THE THINGS I'M

8138
04:28:51,248 --> 04:28:52,416
ENVIGGING AND THAT I'VE SEEN

8139
04:28:52,416 --> 04:28:53,617
THAT'S REALLY HELPFUL IS LIKE

8140
04:28:53,617 --> 04:28:56,754
CONNECTING PEOPLE WITH THE RIGHT

8141
04:28:56,754 --> 04:28:57,221
SUPPORTS.

8142
04:28:57,221 --> 04:28:58,990
LIKE HELPING PEOPLE THINK ABOUT

8143
04:28:58,990 --> 04:28:59,557
WHO IS IN YOUR NETWORK.

8144
04:28:59,557 --> 04:29:04,595
AND AS WE AGE, WE'RE ALL AGING,

8145
04:29:04,595 --> 04:29:07,665
MANY OF US HAVE SOME FORM OF

8146
04:29:07,665 --> 04:29:09,066
FAMILY CAREGIVER, OUR NETWORKS

8147
04:29:09,066 --> 04:29:10,434
ARE GOING TO CHANGE BECAUSE

8148
04:29:10,434 --> 04:29:11,669
PEOPLE WILL NATURALLY HAVE

8149
04:29:11,669 --> 04:29:13,304
DIFFERENT CAPACITIES THAN

8150
04:29:13,304 --> 04:29:14,405
BANDWIDTHS.

8151
04:29:14,405 --> 04:29:14,972
SOME PEOPLE MIGHT HAVE MORE

8152
04:29:14,972 --> 04:29:16,273
BECAUSE THEIR KIDS ARE GOING TO

8153
04:29:16,273 --> 04:29:18,275
GROW UP AND IT'S EASIER TO CALL.

8154
04:29:18,275 --> 04:29:20,177
SO HELPING TO THINK ABOUT -- SO

8155
04:29:20,177 --> 04:29:21,078
SOME OF THE REALLY COOL THINGS

8156
04:29:21,078 --> 04:29:22,146
I'VE SEEN IS KIND OF LIKE

8157
04:29:22,146 --> 04:29:23,914
THINKING ABOUT HELPING FAMILIES

8158
04:29:23,914 --> 04:29:26,017
LOOK AT THE ECOLOGICAL CONTEXT

8159
04:29:26,017 --> 04:29:27,118
IF YOU WILL.

8160
04:29:27,118 --> 04:29:29,720
WHO ARE THESE PLAYERS?

8161
04:29:29,720 --> 04:29:31,155
WHERE CAN WE GO TO AS WE START

8162
04:29:31,155 --> 04:29:32,723
TO THINK ABOUT CAREGIVING?

8163
04:29:32,723 --> 04:29:33,524
I THINK WHAT A LOT OF THE

8164
04:29:33,524 --> 04:29:35,059
FAMILIES AND CERTAINLY THE DATA

8165
04:29:35,059 --> 04:29:39,597
THAT I'VE RUN IS WHEN WE HAVE

8166
04:29:39,597 --> 04:29:40,264
INFORMAL NETWORKS, QUALITY OF

8167
04:29:40,264 --> 04:29:41,465
LIFE IS SO MUCH HIGHER.

8168
04:29:41,465 --> 04:29:43,100
AND SO LIKE WE'RE GETTING --

8169
04:29:43,100 --> 04:29:44,835
FAMILIES ARE SAYING O WE'RE

8170
04:29:44,835 --> 04:29:46,137
GETTING WHEN DONE RIGHT, WE'RE

8171
04:29:46,137 --> 04:29:48,205
GETTING A LOT FROM THESE FORMAL

8172
04:29:48,205 --> 04:29:50,107
NETWORKS BUT WE STILL NEED THESE

8173
04:29:50,107 --> 04:29:50,441
OTHER THINGS.

8174
04:29:50,441 --> 04:29:51,308
I STILL NEED TO BE ABLE TO RUN

8175
04:29:51,308 --> 04:29:52,710
UP TO THE GROCERY STORE FOR 20

8176
04:29:52,710 --> 04:29:54,178
MINUTES AND GRAB MY EGGS BUT

8177
04:29:54,178 --> 04:29:56,547
WHEN I BRING, RIGHT, MY TWO

8178
04:29:56,547 --> 04:29:59,383
YOUNGER CHILDREN AND MY PERHAPS

8179
04:29:59,383 --> 04:30:01,919
ADULTS, YOU KNOW, WHOEVER, IT

8180
04:30:01,919 --> 04:30:02,987
GETS MORE DIFFICULT.

8181
04:30:02,987 --> 04:30:04,288
SO I DON'T KNOW IF THAT ANSWERS

8182
04:30:04,288 --> 04:30:06,690
BUT JUST ONE, CONNECTING PEOPLE,

8183
04:30:06,690 --> 04:30:09,260
HELPING PEOPLE SEE AND

8184
04:30:09,260 --> 04:30:10,127
CONTEXTUALIZE AND VISUALIZE WHO

8185
04:30:10,127 --> 04:30:11,996
IS IN THEIR INFORMAL SOCIAL

8186
04:30:11,996 --> 04:30:12,997
SUPPORT NETWORK AND THEN REALLY

8187
04:30:12,997 --> 04:30:14,999
BEING MINDFUL NOT TO TAX THOSE

8188
04:30:14,999 --> 04:30:16,367
INFORMAL SOCIAL SUPPORT NETWORKS

8189
04:30:16,367 --> 04:30:16,967
AS WELL.

8190
04:30:16,967 --> 04:30:20,471
>> I THINK THAT'S A REALLY
GOOD

8191
04:30:20,471 --> 04:30:22,206
DISCUSSION, KIND OF OUR SORT OF

8192
04:30:22,206 --> 04:30:26,977
MOOMORE FORMAL ON RAMP INTO THEE

8193
04:30:26,977 --> 04:30:28,913
KINDS OF THINGS BUT I THOUGHT

8194
04:30:28,913 --> 04:30:30,014
DR. MORGAN ALSO HAD SOME

8195
04:30:30,014 --> 04:30:30,614
INTERESTING INSIGHT INTO THIS

8196
04:30:30,614 --> 04:30:32,616
THROUGH THE SANKOFA EFFORT.

8197
04:30:32,616 --> 04:30:33,918
BECAUSE YOU HAVE TO DEVELOP, I

8198
04:30:33,918 --> 04:30:34,718
THINK -- AND I'D BE INTERESTED

8199
04:30:34,718 --> 04:30:36,053
IN A DISCUSSION ABOUT THIS, SORT

8200
04:30:36,053 --> 04:30:39,390
OF CULTURALLY AWARE AND

8201
04:30:39,390 --> 04:30:39,990
APPROPRIATE ON RAMPS FOR THOSE

8202
04:30:39,990 --> 04:30:40,291
COMMUNITIES.

8203
04:30:40,291 --> 04:30:43,561
FOR EXAMPLE, A COMMUNITY THAT

8204
04:30:43,561 --> 04:30:44,962
MAY MISTRUST GOVERNMENT, FOR

8205
04:30:44,962 --> 04:30:47,298
EXAMPLE, YOU KNOW, HAS A VERY

8206
04:30:47,298 --> 04:30:49,100
HARD TIME ENTERING ON TO THAT

8207
04:30:49,100 --> 04:30:49,633
ON-RAMP.

8208
04:30:49,633 --> 04:30:51,836
SO IT SEEMS LIKE THE INFORMAL

8209
04:30:51,836 --> 04:30:53,571
NETWORK MAY BE KEY FOR OFFERING

8210
04:30:53,571 --> 04:30:54,872
THEM SUPPORT AND SERVICES.

8211
04:30:54,872 --> 04:30:56,507
SO I WAS JUST WONDERING IF MAYBE

8212
04:30:56,507 --> 04:30:57,842
THERE WAS A LARGER CONVERSATION

8213
04:30:57,842 --> 04:30:59,643
THAT MIGHT GROW OUT OF WHAT YOU

8214
04:30:59,643 --> 04:31:00,644
JUST BROUGHT UP THAT I THOUGHT

8215
04:31:00,644 --> 04:31:01,479
WAS VERY GOOD.

8216
04:31:01,479 --> 04:31:03,314
>> I'D SUGGEST MAYBE WE
TAKE

8217
04:31:03,314 --> 04:31:04,381
THAT CONVERSATION OFFLINE AS

8218
04:31:04,381 --> 04:31:05,616
WE'RE FALLING BEHIND ON OUR

8219
04:31:05,616 --> 04:31:07,118
SCHEDULE AND WE WANT TO MOVE

8220
04:31:07,118 --> 04:31:07,551
FORWARD.

8221
04:31:07,551 --> 04:31:08,953
SO IF IT'S OKAY, SCOTT, I'M

8222
04:31:08,953 --> 04:31:10,354
GOING TO JUST CLOSE THE SESSION

8223
04:31:10,354 --> 04:31:53,264
HERE SO WE CAN ALL TAKE A BREAK

8224
04:31:53,264 --> 04:31:54,832
SHE'S THE GRANDPARENT OF AN

8225
04:31:54,832 --> 04:31:56,667
AUTISTIC ADULT.

8226
04:31:56,667 --> 04:31:57,868
WE ALSO HAVE MS. YETTA MYRICK,

8227
04:31:57,868 --> 04:31:59,403
MEMBER OF OUR COMMITTEE AND

8228
04:31:59,403 --> 04:32:01,772
PARENT OF AN AUTISTIC YOUNG MAN

8229
04:32:01,772 --> 04:32:03,741
AND AN IACC MEMBER.

8230
04:32:03,741 --> 04:32:06,143
FOURTH, WE HAVE MS. LINDSEY

8231
04:32:06,143 --> 04:32:08,145
NEBEKER, WHO'S ALSO A MEMBER OF

8232
04:32:08,145 --> 04:32:09,480
OUR COMMITTEE, AND SHE'S THE

8233
04:32:09,480 --> 04:32:12,116
SIBLING TO AN AUTISTIC ADULT

8234
04:32:12,116 --> 04:32:14,118
WITH HIGH SUPPORT NEEDS AND ALSO

8235
04:32:14,118 --> 04:32:14,752
A MEMBER OF THE COMMITTEE.

8236
04:32:14,752 --> 04:32:17,521
AND FINALLY, WE HAVE MS. NANCY

8237
04:32:17,521 --> 04:32:19,490
RICHEY, AND SHE'S THE MOTHER OF

8238
04:32:19,490 --> 04:32:20,658
AN AUTISTIC ADULT AND A MEMBER

8239
04:32:20,658 --> 04:32:23,260
OF THE RAISE FAMILY CAREGIVING

8240
04:32:23,260 --> 04:32:24,261
ADVISORY COUNCIL THAT WE HEARD

8241
04:32:24,261 --> 04:32:26,163
ABOUT EARLIER TODAY.

8242
04:32:26,163 --> 04:32:29,667
SO I LOOK FORWARD TO HAVING THIS

8243
04:32:29,667 --> 04:32:30,768
CONVERSATION WITH ALL OF YOU.

8244
04:32:30,768 --> 04:32:32,736
I MAY SKIP A QUESTION IF WE ARE

8245
04:32:32,736 --> 04:32:34,572
GETTING SHORT ON TIME.

8246
04:32:34,572 --> 04:32:37,975
I'LL TRY TO KEEP US MOVING ALONG

8247
04:32:37,975 --> 04:32:40,144
BUT I WILL START WITH MY FIRST

8248
04:32:40,144 --> 04:32:42,313
QUESTION AND I'LL JUST DIRECT TO

8249
04:32:42,313 --> 04:32:43,280
EACH ONE OF YOU.

8250
04:32:43,280 --> 04:32:44,381
AND MAYBE I'LL JUST GO IN THE

8251
04:32:44,381 --> 04:32:50,788
ORDER THAT I CAN SEE HERE AND IS

8252
04:32:50,788 --> 04:32:51,388
MS. MCLEMORE ONLINE?

8253
04:32:51,388 --> 04:32:52,189
THERE YOU ARE.

8254
04:32:52,189 --> 04:32:53,857
WELCOME.

8255
04:32:53,857 --> 04:32:56,193
SO PLEASE CAN EACH OF YOU PLEASE

8256
04:32:56,193 --> 04:32:56,961
BRIEFLY INTRODUCE YOURSELF AND

8257
04:32:56,961 --> 04:32:59,797
TELL US ABOUT YOUR JOURNEY AS A

8258
04:32:59,797 --> 04:33:02,633
CAREGIVER?

8259
04:33:02,633 --> 04:33:13,110
SO WE'LL START WITH LINDSEY.

8260
04:33:13,310 --> 04:33:14,979
>> CAN EVERYONE HERE?

8261
04:33:14,979 --> 04:33:16,513
 HEAR?

8262
04:33:16,513 --> 04:33:17,047
OKAY.

8263
04:33:17,047 --> 04:33:19,683
HI, EVERYONE.

8264
04:33:19,683 --> 04:33:24,788
SO I AM LINDSEY NEBEKER.

8265
04:33:24,788 --> 04:33:26,624
I AM AN INDEPENDENT CONSULTANT

8266
04:33:26,624 --> 04:33:28,058
FROM THE WASHINGTON, D.C. AREA,

8267
04:33:28,058 --> 04:33:29,994
FOCUSING ON CREATIVE SERVICES,

8268
04:33:29,994 --> 04:33:32,062
RESEARCH PROJECT COLLABORATION

8269
04:33:32,062 --> 04:33:33,597
AND PROVIDING EDUCATIONAL

8270
04:33:33,597 --> 04:33:35,833
TRAINING FOR CLINICIANS AND

8271
04:33:35,833 --> 04:33:36,367
HEALTHCARE PROFESSIONALS.

8272
04:33:36,367 --> 04:33:38,135
MANY OF YOU ALREADY KNOW THAT I

8273
04:33:38,135 --> 04:33:41,438
AM AUTISTIC, BUT YOU MIGHT NOT

8274
04:33:41,438 --> 04:33:43,774
KNOW THAT I ALSO HAVE AN

8275
04:33:43,774 --> 04:33:44,775
AUTISTIC SIBLING.

8276
04:33:44,775 --> 04:33:46,510
AND MY ONLY SIBLING.

8277
04:33:46,510 --> 04:33:48,145
HIS NAME IS JAMES, AND HE'S A

8278
04:33:48,145 --> 04:33:50,881
COUPLE YEARS YOUNGER THAN ME.

8279
04:33:50,881 --> 04:33:53,384
WE DO SHARE A FEW SIMILARITIES.

8280
04:33:53,384 --> 04:33:55,686
JAMES AND I WERE BOTH BORN IN

8281
04:33:55,686 --> 04:33:57,821
JAPAN IN THE EARLY 1980s.

8282
04:33:57,821 --> 04:33:59,790
WE EACH RECEIVED OUR INITIAL

8283
04:33:59,790 --> 04:34:01,659
DIAGNOSIS OF AUTISM WHEN WE WERE

8284
04:34:01,659 --> 04:34:03,193
AROUND AGE 2.

8285
04:34:03,193 --> 04:34:05,796
WE BOTH WERE EVALUATED AT UCLA

8286
04:34:05,796 --> 04:34:10,768
AND WE WERE BOTH ASSESSED BY DRA

8287
04:34:10,768 --> 04:34:11,468
FAIRLY RENOWNED SPECIALIST IN

8288
04:34:11,468 --> 04:34:12,836
THE FIELD AT THE TIME.

8289
04:34:12,836 --> 04:34:14,938
WE BOTH STARTED BY ATTENDING

8290
04:34:14,938 --> 04:34:19,243
SPECIAL EDUCATION CLASSES

8291
04:34:19,243 --> 04:34:22,746
INCLUDING A BRIEF ENROLLMENT.

8292
04:34:22,746 --> 04:34:24,581
IT'S A SCHOOL SOME OF YOU MAY

8293
04:34:24,581 --> 04:34:26,950
RECOGNIZE BECAUSE IT ALSO HAS AN

8294
04:34:26,950 --> 04:34:27,551
EXPANDED CAMPUS IN THE BOSTON

8295
04:34:27,551 --> 04:34:27,751
AREA.

8296
04:34:27,751 --> 04:34:30,587
EVENTUALLY I TRANSITIONED TO AN

8297
04:34:30,587 --> 04:34:31,322
INTERNATIONAL ENGLISH SPEAKING

8298
04:34:31,322 --> 04:34:33,424
SCHOOL IN A FULLY INCLUSIVE

8299
04:34:33,424 --> 04:34:34,158
CLASSROOM, HOWEVER, BECAUSE

8300
04:34:34,158 --> 04:34:35,592
THERE WERE NO SCHOOLS IN TOKYO

8301
04:34:35,592 --> 04:34:36,894
THAT WERE REALLY TAKING IN

8302
04:34:36,894 --> 04:34:38,295
STUDENTS WITH HIGH SUPPORT

8303
04:34:38,295 --> 04:34:40,130
NEEDS, MY MOM ALONG WITH A SMALL

8304
04:34:40,130 --> 04:34:42,199
GROUP OF PARENTS FORMED A

8305
04:34:42,199 --> 04:34:44,835
COMMITTEE TO CREATE A SMALL

8306
04:34:44,835 --> 04:34:46,003
NON-PROFIT ENGLISH-SPEAKING

8307
04:34:46,003 --> 04:34:48,072
SCHOOL DEDICATED TO CHILDREN AND

8308
04:34:48,072 --> 04:34:50,541
ADOLESCENTS WITH DEVELOPMENTAL

8309
04:34:50,541 --> 04:34:50,874
DISABILITIES.

8310
04:34:50,874 --> 04:34:52,543
OUR FAMILY EVENTUALLY MOVED TO

8311
04:34:52,543 --> 04:34:53,243
THE UNITED STATES WHEN HE WAS

8312
04:34:53,243 --> 04:34:57,648
ABOUT # # AN 9 AND I WAS WILL A.

8313
04:34:57,648 --> 04:34:59,917
THERE ARE ALSO A LOT OF UNIQUE

8314
04:34:59,917 --> 04:35:01,085
DIFFERENCES BETWEEN ME AND

8315
04:35:01,085 --> 04:35:01,618
JAMES.

8316
04:35:01,618 --> 04:35:02,820
MY BROTHER HAS SUBSTANTIAL HIGH

8317
04:35:02,820 --> 04:35:05,255
SUPPORT NEEDS AND HE REQUIRES

8318
04:35:05,255 --> 04:35:05,556
24/7 CARE.

8319
04:35:05,556 --> 04:35:07,057
HE IS NON-SPEAKING AND DOES NOT

8320
04:35:07,057 --> 04:35:09,360
USE A COMMUNICATION DEVICE SO WE

8321
04:35:09,360 --> 04:35:10,561
PRIMARILY ATTUNE OURSELVES TO

8322
04:35:10,561 --> 04:35:13,263
HIS BEHAVIOR, GESTURES AND

8323
04:35:13,263 --> 04:35:15,099
VOCALIZATIONS TO HELP US

8324
04:35:15,099 --> 04:35:16,867
UNDERSTAND HIS UNIQUE METHODS OF

8325
04:35:16,867 --> 04:35:17,835
COMMUNICATING.

8326
04:35:17,835 --> 04:35:20,137
HE HAS LIVED IN A

8327
04:35:20,137 --> 04:35:20,771
COMMUNITY-BASED RESIDENTIAL

8328
04:35:20,771 --> 04:35:22,406
HOUSING PROGRAM SINCE THE AGE OF

8329
04:35:22,406 --> 04:35:24,608
16, AND HE WAS ABLE TO CONTINUE

8330
04:35:24,608 --> 04:35:25,542
ATTENDING A PUBLIC SCHOOL FOR

8331
04:35:25,542 --> 04:35:26,977
STUDENTS WITH DISABILITIES UNTIL

8332
04:35:26,977 --> 04:35:29,380
THE AGE OF 22.

8333
04:35:29,380 --> 04:35:31,048
A LITTLE WHILE AFTER WE SETTLED

8334
04:35:31,048 --> 04:35:32,082
INTO THE U.S., JAMES WAS PLACED

8335
04:35:32,082 --> 04:35:34,251
ON A WAITING LIST FOR GOVERNMENT

8336
04:35:34,251 --> 04:35:36,253
FUNDING AND WAIVERS.

8337
04:35:36,253 --> 04:35:36,920
IT TOOK SEVERAL YEARS BEFORE HE

8338
04:35:36,920 --> 04:35:43,727
FINALLY GOT ON THE LIST.

8339
04:35:43,727 --> 04:35:46,663
AND ANOTHER VERY DISTINCT

8340
04:35:46,663 --> 04:35:48,799
DIFFERENCE, VERY DISTINCT

8341
04:35:48,799 --> 04:35:49,800
DIFFERENCE IS THAT HE WAS BORN A

8342
04:35:49,800 --> 04:35:51,468
TRUE REDHEAD.

8343
04:35:51,468 --> 04:35:53,737
AND I MUST ADMIT THAT I'M

8344
04:35:53,737 --> 04:35:56,240
EXTREMELY ENVIOUS OF HIS RED

8345
04:35:56,240 --> 04:35:56,774
HAIR.

8346
04:35:56,774 --> 04:35:58,075
JAMES TURNED 40 EARLIER THIS

8347
04:35:58,075 --> 04:35:59,510
YEAR AND HE CURRENTLY LIVES IN

8348
04:35:59,510 --> 04:36:01,879
THE WESTERN U.S. OVER

8349
04:36:01,879 --> 04:36:05,816
2,000 MILES AWAY FROM ME.

8350
04:36:05,816 --> 04:36:07,985
I'M CONTINUING TO LEARN AN

8351
04:36:07,985 --> 04:36:10,654
INVALUABLE LESSON ABOUT YOU

8352
04:36:10,654 --> 04:36:11,288
HUMANISTIC NATURE OF CARING FOR

8353
04:36:11,288 --> 04:36:14,792
ONE ANOTHER, SOMETHING MANY OF

8354
04:36:14,792 --> 04:36:16,060
US INCLUDING MYSELF CAN

8355
04:36:16,060 --> 04:36:16,693
SOMETIMES FORGET.

8356
04:36:16,693 --> 04:36:18,328
AS AN AUTISTIC INDIVIDUAL, I CAN

8357
04:36:18,328 --> 04:36:20,497
DEVELOP A TENDENCY TO BE SELF SN

8358
04:36:20,497 --> 04:36:21,365
TERRED, STRIEMS FEELING LIKE THE

8359
04:36:21,365 --> 04:36:22,733
WORLD REVOLVES AROUND ME.

8360
04:36:22,733 --> 04:36:23,734
GROWING UP WITH DISTINCT

8361
04:36:23,734 --> 04:36:25,035
DIFFERENCES HAS MADE ME MORE

8362
04:36:25,035 --> 04:36:28,605
OPEN MINDED TO THE DIVERSITY OF

8363
04:36:28,605 --> 04:36:29,506
COMMUNITIES, CULTURES AND

8364
04:36:29,506 --> 04:36:30,374
BELIEFS IN OUR WORLD.

8365
04:36:30,374 --> 04:36:31,875
THROUGH THE INITIAL FOUR YEARS

8366
04:36:31,875 --> 04:36:33,811
OF MY LIFE BEING NON-SPEAKING I

8367
04:36:33,811 --> 04:36:35,479
HAD DEVELOPED A FULL CONVICTION

8368
04:36:35,479 --> 04:36:37,214
THAT THOSE WHO DO NOT SPEAK

8369
04:36:37,214 --> 04:36:39,149
UNDERSTAND MORE THAN WE ASSUME.

8370
04:36:39,149 --> 04:36:41,552
I OFTEN CONTEMPLATE HOW CAN I

8371
04:36:41,552 --> 04:36:43,620
HONESTLY CONVEY REAL LIFE

8372
04:36:43,620 --> 04:36:45,456
EXPERIENCES INCLUDING THE IMPACT

8373
04:36:45,456 --> 04:36:47,057
ON MY BROTHER WHILE ALSO

8374
04:36:47,057 --> 04:36:51,428
PORTRAYING HIM IN A

8375
04:36:51,428 --> 04:36:52,763
COMPASSIONATE LIGHT.

8376
04:36:52,763 --> 04:36:53,530
BOTH ASPECTS ARE IMPORTANT.

8377
04:36:53,530 --> 04:36:55,165
WE HAVE TO ACKNOWLEDGE THE

8378
04:36:55,165 --> 04:36:56,800
REALITIES WE FACE, AND THEIR

8379
04:36:56,800 --> 04:36:58,769
EFFECTS ON US AND OUR LOVED

8380
04:36:58,769 --> 04:37:02,573
ONES, WHILE ENSURING THAT OUR

8381
04:37:02,573 --> 04:37:03,774
STORY-TELLING IS RESPECTFUL AND

8382
04:37:03,774 --> 04:37:05,642
HUMANIZING OUR LOVED ONES.

8383
04:37:05,642 --> 04:37:08,145
THIS EXTENDS TO ANY ISSUE,

8384
04:37:08,145 --> 04:37:10,614
WHETHER THAT BE ADDICTION,

8385
04:37:10,614 --> 04:37:11,381
FINANCIAL HARDSHIPS,

8386
04:37:11,381 --> 04:37:13,150
RELATIONSHIP STRUGGLES, JOB

8387
04:37:13,150 --> 04:37:15,419
LOSS, LONELINESS, CHRONIC

8388
04:37:15,419 --> 04:37:17,287
ILLNESS, OR NAVIGATING LIFE

8389
04:37:17,287 --> 04:37:20,591
TRANSITIONS.

8390
04:37:20,591 --> 04:37:21,625
>> THANK YOU, LINDSEY.

8391
04:37:21,625 --> 04:37:23,026
AND YETTA.

8392
04:37:23,026 --> 04:37:24,661
>> HELLO, EVERYONE.

8393
04:37:24,661 --> 04:37:25,629
THANKS FOR GIVING ME A MOMENT TO

8394
04:37:25,629 --> 04:37:26,830
SPEAK AND TO BE ON THIS PANEL

8395
04:37:26,830 --> 04:37:28,665
TODAY.

8396
04:37:28,665 --> 04:37:30,968
I HAVE A HAT RACK OF ROLES.

8397
04:37:30,968 --> 04:37:32,703
I'VE GRADUATED FROM HAVING MANY

8398
04:37:32,703 --> 04:37:34,338
HATS.

8399
04:37:34,338 --> 04:37:36,106
MY MOST IMPORTANT ROLE, OF

8400
04:37:36,106 --> 04:37:37,608
COURSE, IS AS THE MOTHER OF A

8401
04:37:37,608 --> 04:37:39,776
SOON TO BE 20-YEAR-OLD,

8402
04:37:39,776 --> 04:37:41,712
21-YEAR-OLD, HE'S 20 NOW, IN

8403
04:37:41,712 --> 04:37:41,979
SEPTEMBER.

8404
04:37:41,979 --> 04:37:44,148
I DON'T SAY HIS NAME, BUT I WILL

8405
04:37:44,148 --> 04:37:48,952
SAY A OR WILL SAY HE TO DENOTE

8406
04:37:48,952 --> 04:37:51,622
WHEN I'M SPEAKING ABOUT HIM.

8407
04:37:51,622 --> 04:37:53,524
BUT HE WAS DIAGNOSED WITH

8408
04:37:53,524 --> 04:37:55,692
AUTISM, ADHD AND AN INTELLECTUAL

8409
04:37:55,692 --> 04:37:57,394
DISABILITY.

8410
04:37:57,394 --> 04:37:58,262
MANY OF YOU KNOW THAT I'M

8411
04:37:58,262 --> 04:37:59,696
PRESIDENT AND FOUNDER OF AN

8412
04:37:59,696 --> 04:38:02,199
ORGANIZATION LOCALLY HERE CALLED

8413
04:38:02,199 --> 04:38:05,569
DC AWESOME PARENTS, A 501(C)3

8414
04:38:05,569 --> 04:38:06,403
NON-PROFIT ORGANIZATION THAT I

8415
04:38:06,403 --> 04:38:08,605
FOUNDED WAY BACK IN 2008.

8416
04:38:08,605 --> 04:38:10,140
YOU ALL KNOW I'M A PUBLIC MEMBER

8417
04:38:10,140 --> 04:38:11,208
OF IACC.

8418
04:38:11,208 --> 04:38:13,710
I'M ALSO THE CDC'S ACT EARLY

8419
04:38:13,710 --> 04:38:15,512
AMBASSADOR TO DC AND A COMMUNITY

8420
04:38:15,512 --> 04:38:17,180
MEMBER ON THE DC'S DEVELOPMENTAL

8421
04:38:17,180 --> 04:38:17,814
DISABILITY COUNCIL.

8422
04:38:17,814 --> 04:38:19,883
I'M NOT HERE TO GIVE YOU MY

8423
04:38:19,883 --> 04:38:20,617
RESUME, BUT I SHARE THIS WITH

8424
04:38:20,617 --> 04:38:22,352
YOU SO THAT YOU CAN UNDERSTAND

8425
04:38:22,352 --> 04:38:24,254
THAT WHERE I AM RIGHT NOW IS NOT

8426
04:38:24,254 --> 04:38:25,889
WHO I WAS WHEN MY SON WAS

8427
04:38:25,889 --> 04:38:26,957
INITIALLY DIAGNOSED.

8428
04:38:26,957 --> 04:38:29,159
I HAD NO IDEA WHAT I WAS DOING

8429
04:38:29,159 --> 04:38:30,594
IN THE EARLY DAYS.

8430
04:38:30,594 --> 04:38:33,096
I DID NOT KNOW WHERE TO START.

8431
04:38:33,096 --> 04:38:34,631
MANY OF THE STORIES THAT WE HAVE

8432
04:38:34,631 --> 04:38:36,867
HEARD THROUGH PUBLIC COMMENTS,

8433
04:38:36,867 --> 04:38:39,169
THROUGH US SHARING IN

8434
04:38:39,169 --> 04:38:41,238
CONVERSATION TODAY REALLY IS A

8435
04:38:41,238 --> 04:38:42,239
REFLECTION OF WHERE I WAS IN THE

8436
04:38:42,239 --> 04:38:44,841
VERY BEGINNING, AND SAD TO SAY

8437
04:38:44,841 --> 04:38:46,176
THAT'S WHERE MANY FAMILIES STILL

8438
04:38:46,176 --> 04:38:48,211
ARE RIGHT NOW TODAY.

8439
04:38:48,211 --> 04:38:50,614
PRIOR TO MY SON'S DIAGNOSIS, HE

8440
04:38:50,614 --> 04:38:53,917
WAS DIAGNOSED WITH AN EXPRESSIVE

8441
04:38:53,917 --> 04:38:55,986
RECEPTIVE SPEECH DELAY AT 2 1/2

8442
04:38:55,986 --> 04:38:56,520
YEARS OLD.

8443
04:38:56,520 --> 04:38:57,521
TO GIVE YOU A LITTLE BIT OF

8444
04:38:57,521 --> 04:39:00,524
FLAVOR OF HOW WE GOT TO THE

8445
04:39:00,524 --> 04:39:02,092
AUTISM DIAGNOSIS, I HAD ENOUGH

8446
04:39:02,092 --> 04:39:03,727
SENSE AND I REALLY THINK IT WAS

8447
04:39:03,727 --> 04:39:04,728
EITHER DIVINE INTERVENTION OR ME

8448
04:39:04,728 --> 04:39:06,463
JUST REALLY BEING INTUITIVE

8449
04:39:06,463 --> 04:39:07,931
ABOUT WHAT I NEEDED TO DO

8450
04:39:07,931 --> 04:39:08,932
BECAUSE NO ONE WAS GUIDING ME

8451
04:39:08,932 --> 04:39:12,603
THROUGH THE PLO SES PROCESS AT S

8452
04:39:12,603 --> 04:39:14,238
POINT REALLY WAS ME WATCHING HIM

8453
04:39:14,238 --> 04:39:16,506
AND TRYING MY BEST TO BE IN TUNE

8454
04:39:16,506 --> 04:39:17,174
WITH HIM TO FIGURE OUT WHAT HIS

8455
04:39:17,174 --> 04:39:18,675
NEEDS WERE, AND SO WHEN HE WAS

8456
04:39:18,675 --> 04:39:21,745
NOT SPEAKING, I WAS LIKE OKAY,

8457
04:39:21,745 --> 04:39:22,746
LET ME FIND SOMEONE THAT CAN

8458
04:39:22,746 --> 04:39:23,947
HELP ME WORK WITH HIM.

8459
04:39:23,947 --> 04:39:25,248
AND SO I GOT CONNECTED WITH A

8460
04:39:25,248 --> 04:39:27,250
SPEECH AND LANGUAGE PATHOLOGIST.

8461
04:39:27,250 --> 04:39:29,052
THE CHALLENGE WAS, WE ARE IN

8462
04:39:29,052 --> 04:39:30,921
D.C.  PROPER, THE SPEECH AND

8463
04:39:30,921 --> 04:39:32,256
LANGUAGE PATHOLOGIST WAS OVER

8464
04:39:32,256 --> 04:39:33,857
THE LINE IN MONTGOMERY COUNTY,

8465
04:39:33,857 --> 04:39:35,058
WHICH IS WHERE WE ARE SITUATED

8466
04:39:35,058 --> 04:39:35,492
RIGHT NOW.

8467
04:39:35,492 --> 04:39:38,128
SHE DID NOT KNOW HOW TO NAVIGATE

8468
04:39:38,128 --> 04:39:40,931
D.C.  SERVICES, SO SHE WAS LIKE,

8469
04:39:40,931 --> 04:39:44,768
YETTA, WHY DON'T YOU TALK TO A'S

8470
04:39:44,768 --> 04:39:46,136
DOCTOR ABOUT AUTISM.

8471
04:39:46,136 --> 04:39:47,337
I THINK YOUR SON MIGHT BE

8472
04:39:47,337 --> 04:39:47,671
AUTISTIC.

8473
04:39:47,671 --> 04:39:49,773
AND I SAID OKAY, SO WE WENT FOR

8474
04:39:49,773 --> 04:39:52,242
A WELL CHILD VISIT AND I WAS

8475
04:39:52,242 --> 04:39:54,645
SPEAKING TO THE NURSE AND I SAID

8476
04:39:54,645 --> 04:39:57,714
HEY, A IS GOING TO SEE A SPEECH

8477
04:39:57,714 --> 04:39:59,349
AND LANGUAGE PATHOLOGIST BECAUSE

8478
04:39:59,349 --> 04:40:01,418
HIS SPEECH DELAY, AND I AGAIN

8479
04:40:01,418 --> 04:40:02,853
HAD GOOD SENSE ENOUGH TO KNOW,

8480
04:40:02,853 --> 04:40:04,888
WE GOT A REPORT, SHE DID AN

8481
04:40:04,888 --> 04:40:08,492
EVALUATION I TOOK TO THE DOCTOR.

8482
04:40:08,492 --> 04:40:12,162
THE NURSE, AS WELL MEANING AS

8483
04:40:12,162 --> 04:40:13,530
SHE WAS, SHE SAID TO ME, MOM,

8484
04:40:13,530 --> 04:40:15,499
YOU CAN'T JUST LET ANYONE

8485
04:40:15,499 --> 04:40:17,334
DIAGNOSE YOUR CHILD, AND THAT

8486
04:40:17,334 --> 04:40:17,668
DELAYED ME.

8487
04:40:17,668 --> 04:40:19,069
SO FAST FORWARD, AND WE THINK

8488
04:40:19,069 --> 04:40:22,706
ABOUT THE WORK I'M DOING AS THE

8489
04:40:22,706 --> 04:40:24,741
CDC ACT EARLY AMBASSADOR, THAT

8490
04:40:24,741 --> 04:40:25,509
ONE MOMENT CHANGED MY LIFE.

8491
04:40:25,509 --> 04:40:28,645
IT DELAYED ME IN GETTING MY SON

8492
04:40:28,645 --> 04:40:28,912
DIAGNOSED.

8493
04:40:28,912 --> 04:40:29,546
IT WASN'T UNTIL THE CHILD CARE

8494
04:40:29,546 --> 04:40:30,981
CENTER THAT HE WAS IN WAS

8495
04:40:30,981 --> 04:40:35,052
ACTUALLY CHANGING OVER WHO WAS

8496
04:40:35,052 --> 04:40:37,087
RUNNING THE PROGRAM, WHERE THEY

8497
04:40:37,087 --> 04:40:39,589
ACTUALLY IDENTIFIED HIM AND GOT

8498
04:40:39,589 --> 04:40:41,024
ME LINKEDIN TO AT THAT POINT WAS

8499
04:40:41,024 --> 04:40:42,893
CALLED THE CARE CENTER, WHICH

8500
04:40:42,893 --> 04:40:44,294
WHO THE HECK KNEW WHAT THE CARE

8501
04:40:44,294 --> 04:40:45,062
CENTER WAS?

8502
04:40:45,062 --> 04:40:48,865
I NOW KNOW, IT WAS A CENTER OF

8503
04:40:48,865 --> 04:40:50,300
ASSESSMENT IN REFERRAL AND

8504
04:40:50,300 --> 04:40:50,934
EVALUATION.

8505
04:40:50,934 --> 04:40:52,703
BUT WHO KNEW THAT?

8506
04:40:52,703 --> 04:40:54,337
THE INFORMATION WAS JUST NOT

8507
04:40:54,337 --> 04:40:54,771
READILY AVAILABLE.

8508
04:40:54,771 --> 04:40:55,872
SO WE WENT THROUGH THE PROCESS,

8509
04:40:55,872 --> 04:40:57,674
GOT HIM EVALUATED, WE GOT

8510
04:40:57,674 --> 04:41:00,510
CONNECTED WITH AN AMAZING

8511
04:41:00,510 --> 04:41:03,146
PSYCHOLOGIST AT THE CENTER FOR

8512
04:41:03,146 --> 04:41:04,214
AUTISM AT CHILDREN'S NATIONAL

8513
04:41:04,214 --> 04:41:05,315
HOSPITAL, WHICH IS LOCALLY HERE

8514
04:41:05,315 --> 04:41:07,951
AND SHE SAW ME.

8515
04:41:07,951 --> 04:41:09,252
SHE UNDERSTOOD, SHE'S A WHITE

8516
04:41:09,252 --> 04:41:10,887
WOMAN, I SAY THIS AS AN AFRICAN

8517
04:41:10,887 --> 04:41:12,556
AMERICAN WOMAN, I TRULY WAS

8518
04:41:12,556 --> 04:41:12,789
BLESSED.

8519
04:41:12,789 --> 04:41:15,425
I DON'T NECESSARILY HAVE ALL THE

8520
04:41:15,425 --> 04:41:16,960
HORROR STORIES.

8521
04:41:16,960 --> 04:41:19,730
THERE WERE SOME, BUT NOT ALL THE

8522
04:41:19,730 --> 04:41:20,797
HORROR STORIES THAT I SOMETIMES

8523
04:41:20,797 --> 04:41:23,366
HEAR AS IT RELATES TO BLACK AND

8524
04:41:23,366 --> 04:41:24,000
AFRICAN AMERICAN FAMILIES AND

8525
04:41:24,000 --> 04:41:25,635
I'M TRULY BLESSED.

8526
04:41:25,635 --> 04:41:26,236
AND SOMETIMES I THINK THAT IT

8527
04:41:26,236 --> 04:41:27,604
HAS TO DO WITH THE FACT THAT I

8528
04:41:27,604 --> 04:41:30,073
WAS SITUATED IN THE DISTRICT OF

8529
04:41:30,073 --> 04:41:30,741
COLUMBIA.

8530
04:41:30,741 --> 04:41:31,975
WHERE THERE ARE A LOT MORE

8531
04:41:31,975 --> 04:41:34,711
PEOPLE OF COLOR, IF YOU WILL,

8532
04:41:34,711 --> 04:41:36,480
RIGHT, AND SO SHE SAW ME, SHE

8533
04:41:36,480 --> 04:41:38,548
SAW ME COME IN WITH THE PECKS,

8534
04:41:38,548 --> 04:41:41,585
WE HAVE THE PICTURE EXCHANGE

8535
04:41:41,585 --> 04:41:42,052
COMMUNICATION SYSTEM.

8536
04:41:42,052 --> 04:41:44,121
SHE SAYS, YETTA, YOU'RE THE ONLY

8537
04:41:44,121 --> 04:41:45,422
MOM I SEE COMING IN, YOU'RE

8538
04:41:45,422 --> 04:41:48,191
COMING IN TO AN EVALUATION WITH

8539
04:41:48,191 --> 04:41:50,394
THIS -- WITH THE PEX SYSTEM AND

8540
04:41:50,394 --> 04:41:51,294
YOU'RE LIKE ACTUALLY REALLY

8541
04:41:51,294 --> 04:41:52,062
TRYING TO USE IT.

8542
04:41:52,062 --> 04:41:55,732
SO OVER TIME, RIGHT, SHE WILL

8543
04:41:55,732 --> 04:41:57,400
SAY TO THIS DAY, I WANT TO GIVE

8544
04:41:57,400 --> 04:42:00,103
HER A SHOUT OUT, LAURA ANTHONY,

8545
04:42:00,103 --> 04:42:00,704
SHE'S NOW AT THE UNIVERSITY OF

8546
04:42:00,704 --> 04:42:01,404
COLORADO DOING WORK AND I'VE

8547
04:42:01,404 --> 04:42:03,373
DONE WORK WITH HER THROUGH THE

8548
04:42:03,373 --> 04:42:06,243
YEARS WHEN SHE WAS HERE LOCALLY.

8549
04:42:06,243 --> 04:42:08,211
BUT SHE WAS LIKE, I SEE YOU AND

8550
04:42:08,211 --> 04:42:09,312
I WANT TO HELP YOU AND THIS IS

8551
04:42:09,312 --> 04:42:11,481
WHAT YOU NEED TO DO, AND I

8552
04:42:11,481 --> 04:42:13,016
DID -- I TOOK ALL THE STEPS.

8553
04:42:13,016 --> 04:42:14,985
I TOOK TIME TO RESEARCH AND

8554
04:42:14,985 --> 04:42:17,154
LEARN AND FIGURE OUT WHAT WORKED

8555
04:42:17,154 --> 04:42:17,487
FOR HIM.

8556
04:42:17,487 --> 04:42:19,422
MY SON IS AN ARTIST.

8557
04:42:19,422 --> 04:42:20,857
I FIGURED THAT OUT EARLIER.

8558
04:42:20,857 --> 04:42:22,826
I WAS LIKE OKAY, HOW DO I GET

8559
04:42:22,826 --> 04:42:24,995
SOMEONE THAT CAN HELP ME WITH

8560
04:42:24,995 --> 04:42:25,662
HIS ART?

8561
04:42:25,662 --> 04:42:28,832
BECAUSE I KNEW IN THE BACK OF MY

8562
04:42:28,832 --> 04:42:31,435
MIND THAT WHAT HE WAS DOING

8563
04:42:31,435 --> 04:42:33,837
RIGHT NOW, HIS LOVE OF ART WILL

8564
04:42:33,837 --> 04:42:34,805
MAYBE TRANSLATE TO SOMETHING AS

8565
04:42:34,805 --> 04:42:37,607
HE BECAME AN ADULT.

8566
04:42:37,607 --> 04:42:37,808
RIGHT?

8567
04:42:37,808 --> 04:42:39,409
I READ ABOUT HORSES AND HOW

8568
04:42:39,409 --> 04:42:40,710
HORSES, YOU KNOW, HELP CHILDREN

8569
04:42:40,710 --> 04:42:41,511
WITH AUTISM.

8570
04:42:41,511 --> 04:42:43,647
AND SO WE STARTED GOING TO PONY

8571
04:42:43,647 --> 04:42:44,848
RIDES EVERY WEEK, I WAS PAYING

8572
04:42:44,848 --> 04:42:46,283
WHATEVER THE COST WAS, WE WOULD

8573
04:42:46,283 --> 04:42:49,319
GO AND PAY FOR PONY RIDES.

8574
04:42:49,319 --> 04:42:51,087
AND NOW HE IS A FULL-FLEDGED

8575
04:42:51,087 --> 04:42:51,721
EQUESTRIAN.

8576
04:42:51,721 --> 04:42:55,492
WE GO, WE SHOW UP EVERY WEEK, WE

8577
04:42:55,492 --> 04:42:56,226
GO AND HE CAN TACK THAT HORSE

8578
04:42:56,226 --> 04:42:58,295
AND TAKE THAT HORSE OUT AND

8579
04:42:58,295 --> 04:42:59,062
RIDE.

8580
04:42:59,062 --> 04:43:03,233
NOW, THIS IS NOT TO SAY THAT I

8581
04:43:03,233 --> 04:43:04,301
HAVE NOT MADE SACRIFICES.

8582
04:43:04,301 --> 04:43:06,369
WE LIVE AT HOME WITH MY PARENTS.

8583
04:43:06,369 --> 04:43:08,205
WE LIVE IN A MULTIGENERATIONAL

8584
04:43:08,205 --> 04:43:08,405
HOME.

8585
04:43:08,405 --> 04:43:10,507
AND I'M NOT AT ALL EMBARRASSED

8586
04:43:10,507 --> 04:43:11,708
TO SAY THAT.

8587
04:43:11,708 --> 04:43:13,877
WE HAVE TO MAKE SACRIFICES AND

8588
04:43:13,877 --> 04:43:14,344
DO WHAT WE NEED TO DO.

8589
04:43:14,344 --> 04:43:16,079
I WANT TO GIVE A SHOUT OUT TO MY

8590
04:43:16,079 --> 04:43:18,114
MOTHER, TO MY FATHER, TO MY

8591
04:43:18,114 --> 04:43:19,115
BROTHER, TO MY GRANDMOTHER, GOD

8592
04:43:19,115 --> 04:43:21,751
REST HER SOUL, WHO WHEN HE WAS

8593
04:43:21,751 --> 04:43:24,054
LITTLE TOOK CARE OF HIM.

8594
04:43:24,054 --> 04:43:25,021
SUPPORTED ME.

8595
04:43:25,021 --> 04:43:25,355
RIGHT?

8596
04:43:25,355 --> 04:43:27,757
AND I'VE RECOGNIZED THERE ARE SO

8597
04:43:27,757 --> 04:43:29,960
MANY FAMILIES OUT HERE WHO DO

8598
04:43:29,960 --> 04:43:31,995
NOT HAVE THAT SUPPORT.

8599
04:43:31,995 --> 04:43:33,096
AND I THINK THAT IS THE REASON

8600
04:43:33,096 --> 04:43:35,832
WHY I CAN BE HERE TODAY AND TALK

8601
04:43:35,832 --> 04:43:38,335
TO YOU AND SHARE ABOUT MY

8602
04:43:38,335 --> 04:43:40,871
EXPERIENCE, AND WE'VE BEEN SO

8603
04:43:40,871 --> 04:43:42,839
BLESSED TO TAP INTO A LOT OF

8604
04:43:42,839 --> 04:43:43,607
SERVICES.

8605
04:43:43,607 --> 04:43:44,808
I WASN'T ALWAYS ABLE TO PAY FOR

8606
04:43:44,808 --> 04:43:45,675
ART.

8607
04:43:45,675 --> 04:43:47,510
I HAD TO MAKE CHOICES.

8608
04:43:47,510 --> 04:43:50,046
WITH CAN I PAY FOR PHYSICAL

8609
04:43:50,046 --> 04:43:52,182
THERAPY, CAN WE PAY FOR ART?

8610
04:43:52,182 --> 04:43:52,983
OKAY, WE TOOK A BREAK FOR A

8611
04:43:52,983 --> 04:43:54,084
NUMBER OF YEARS, RIGHT?

8612
04:43:54,084 --> 04:43:55,685
YOU MAKE CHOICES.

8613
04:43:55,685 --> 04:43:56,286
BUT FORTUNATELY ENOUGH, I WAS

8614
04:43:56,286 --> 04:43:57,020
ABLE TO MAKE THOSE CHOICES

8615
04:43:57,020 --> 04:43:58,455
BECAUSE I DECIDED TO STAY AT

8616
04:43:58,455 --> 04:44:03,126
HOME AND MY FAMILIES WILL

8617
04:44:03,126 --> 04:44:03,994
WILLING TO HAVE ME, LET'S JUST

8618
04:44:03,994 --> 04:44:04,561
BE REAL.

8619
04:44:04,561 --> 04:44:05,762
BUT WE'RE TRULY BLESSED.

8620
04:44:05,762 --> 04:44:07,497
I THINK THAT MY LIFE IS ALL THE

8621
04:44:07,497 --> 04:44:08,598
BETTER BECAUSE OF MY SON.

8622
04:44:08,598 --> 04:44:11,101
AND I HAVE LEARNED SO MANY

8623
04:44:11,101 --> 04:44:15,705
THINGS, AND I'M STILL LEARNING.

8624
04:44:15,705 --> 04:44:16,306
AND I THINK THAT'S THE PIECE.

8625
04:44:16,306 --> 04:44:17,374
I SAY THIS TO ALL THE FAMILIES

8626
04:44:17,374 --> 04:44:18,642
AND INDIVIDUALS, WE JUST HAVE TO

8627
04:44:18,642 --> 04:44:21,544
KEEP FIGHTING THE GOOD FIGHT AND

8628
04:44:21,544 --> 04:44:22,913
WORKING AND ADVOCATING.

8629
04:44:22,913 --> 04:44:24,014
THAT'S WHAT'S GOING TO MAKE THE

8630
04:44:24,014 --> 04:44:24,681
DIFFERENCE.

8631
04:44:24,681 --> 04:44:30,654
>> THANK YOU, YETTA.

8632
04:44:30,654 --> 04:44:31,187
>> HI.

8633
04:44:31,187 --> 04:44:34,257
MY NAME IS NANCY RICHEY.

8634
04:44:34,257 --> 04:44:36,860
I STARTED SO MANY TIMES LOOK AT

8635
04:44:36,860 --> 04:44:37,827
ALL OF YOUR NOTES THIS PAST WEEK

8636
04:44:37,827 --> 04:44:39,362
TO WRITE DOWN MY ANSWERS AND

8637
04:44:39,362 --> 04:44:41,331
FINALLY I JUST SAID I CAN'T.

8638
04:44:41,331 --> 04:44:41,965
I JUST CAN'T WRITE THEM ALL

8639
04:44:41,965 --> 04:44:42,198
DOWN.

8640
04:44:42,198 --> 04:44:43,633
SO THEY'RE JUST GONNA COME AS

8641
04:44:43,633 --> 04:44:45,902
THEY COME OUT OF MY HEAD.

8642
04:44:45,902 --> 04:44:48,004
MY SON, WE HAVE ONE CHILD AND

8643
04:44:48,004 --> 04:44:50,073
IT'S DAN, AND HE'S 30 YEARS OLD.

8644
04:44:50,073 --> 04:44:53,977
AND HE LIVES WITH US.

8645
04:44:53,977 --> 04:44:55,312
I CAN GIVE YOU A LITTLE BIT OF

8646
04:44:55,312 --> 04:44:56,413
THE -- YOU KNOW, THE BEGINNING

8647
04:44:56,413 --> 04:44:58,481
OF THIS JOURNEY STORY AND I

8648
04:44:58,481 --> 04:45:00,750
SHARE THIS NOT FOR ANY KIND OF

8649
04:45:00,750 --> 04:45:02,953
PITY BUT PRIOR TO HAVING DAN, MY

8650
04:45:02,953 --> 04:45:05,221
HUSBAND AND I EXPERIENCED FIVE

8651
04:45:05,221 --> 04:45:07,390
PREGNANCY LOSSES.

8652
04:45:07,390 --> 04:45:09,025
SO THE ONLY REASON I SAY THAT IS


8653
04:45:09,025 --> 04:45:10,794
BECAUSE WHEN THAT HAPPENS, AND

8654
04:45:10,794 --> 04:45:13,830
THEN YOU FINALLY HAVE A FULL

8655
04:45:13,830 --> 04:45:17,467
TERM DELIVERY, YOU'RE LIKE,

8656
04:45:17,467 --> 04:45:19,769
FINALLY YOU KNOW THE LIFE

8657
04:45:19,769 --> 04:45:23,306
WE'VE ANTICIPATED IS BEGINNING.

8658
04:45:23,306 --> 04:45:26,176
AND SO, AND YET, I SAY THE SAME

8659
04:45:26,176 --> 04:45:27,711
THING AS YOU THAT I'M A BETTER

8660
04:45:27,711 --> 04:45:28,678
PERSON BECAUSE OF HIM.

8661
04:45:28,678 --> 04:45:31,281
MY HUSBAND AND I SAY ALL THE

8662
04:45:31,281 --> 04:45:33,383
TIME THAT DAN JUST REALLY TAUGHT

8663
04:45:33,383 --> 04:45:34,351
US WHAT MATTERS.

8664
04:45:34,351 --> 04:45:37,087
HE REALLY TAUGHT US WHAT'S

8665
04:45:37,087 --> 04:45:37,354
IMPORTANT.

8666
04:45:37,354 --> 04:45:40,523
AND I AM VERY, VERY BLESSED TO

8667
04:45:40,523 --> 04:45:42,726
BE IN A MARRIAGE WITH TRULY MY

8668
04:45:42,726 --> 04:45:44,628
BEST FRIEND AND A PART MERAND AN

8669
04:45:44,628 --> 04:45:46,563
INCREDIBLE FATHER AND I DON'T

8670
04:45:46,563 --> 04:45:48,665
QUITE KNOW HOW A SINGLE MOM OR A

8671
04:45:48,665 --> 04:45:51,001
SINGLE DAD COULD DO THIS ON YOUR

8672
04:45:51,001 --> 04:45:51,167
OWN.

8673
04:45:51,167 --> 04:45:54,437
MY HAT IS OFF TO SOMEONE WHO'S

8674
04:45:54,437 --> 04:45:55,939
DOING IT ALONE BECAUSE WE WILL

8675
04:45:55,939 --> 04:45:58,141
SEE A SITUATION WITH DAN WHERE,

8676
04:45:58,141 --> 04:45:59,976
YOU KNOW HE'S STARTING TO HAVE A

8677
04:45:59,976 --> 04:46:02,646
MELT DOWN AND HE'S REALLY MAD AT

8678
04:46:02,646 --> 04:46:03,747
ME, USUALLY BECAUSE I'M SUPPOSED

8679
04:46:03,747 --> 04:46:06,016
TO KNOW EVERY THOUGHT IN HIS

8680
04:46:06,016 --> 04:46:08,952
HEAD, AND TOM WILL JUST SAY, I

8681
04:46:08,952 --> 04:46:09,386
GOT THIS.

8682
04:46:09,386 --> 04:46:11,187
YOU TAKE A BREAK, YOU GO CO WHAT

8683
04:46:11,187 --> 04:46:14,491
YOU NEED TO DO TO RECOVER FROM

8684
04:46:14,491 --> 04:46:15,191
THIS.

8685
04:46:15,191 --> 04:46:18,828
SO WE'RE VERY, VERY TIGHT LITTLE

8686
04:46:18,828 --> 04:46:19,763
FAMILY OF 3.

8687
04:46:19,763 --> 04:46:21,698
DAN, LET'S SEE, I WAS THINKING

8688
04:46:21,698 --> 04:46:23,967
THAT SOME OF THE MOST DIFFICULT

8689
04:46:23,967 --> 04:46:26,136
TIMES WERE IN THE WHOLE SCHOOL

8690
04:46:26,136 --> 04:46:27,670
YEARS, YOU KNOW JUST REALLY

8691
04:46:27,670 --> 04:46:30,407
HOPING AND PRAYING THAT EACH

8692
04:46:30,407 --> 04:46:33,410
SCHOOL YEAR, HIS TEAM, HIS

8693
04:46:33,410 --> 04:46:35,945
TEACHERS AND SUPPORT PEOPLE

8694
04:46:35,945 --> 04:46:37,814
WOULD BE LIKE PARTNERS WITH US

8695
04:46:37,814 --> 04:46:40,350
CAN THERE WERE MANY YEARS WHERE

8696
04:46:40,350 --> 04:46:45,055
THAT WASN'T THE CASE, HENCE WE

8697
04:46:45,055 --> 04:46:45,688
CHANGED SCHOOL DISTRICTS.

8698
04:46:45,688 --> 04:46:47,123
BUT BY THE TIME HE GOT TO HIGH

8699
04:46:47,123 --> 04:46:49,259
SCHOOL IT WAS JUST AMAZING, HE

8700
04:46:49,259 --> 04:46:51,828
JUST HAD AN INCREDIBLE TEACHER,

8701
04:46:51,828 --> 04:46:52,662
AN INCREDIBLE TEAM, AND BEING

8702
04:46:52,662 --> 04:46:54,664
THAT HE COULD AT A IN SCHOOL

8703
04:46:54,664 --> 04:46:57,100
STILL HE WAS 21, HE HAD THIS

8704
04:46:57,100 --> 04:46:58,601
INCREDIBLE GROUP FOR LIKE 5

8705
04:46:58,601 --> 04:46:59,936
YEARS.

8706
04:46:59,936 --> 04:47:01,271
SO THAT WAS GREAT.

8707
04:47:01,271 --> 04:47:05,241
IN TERMS OF WEIGHTING, DAN WAS

8708
04:47:05,241 --> 04:47:07,977
DIAGNOSED WHEN HE WAS ABOUT 4

8709
04:47:07,977 --> 04:47:11,614
BUT WE HAD ABOUT AN 8 MONTH

8710
04:47:11,614 --> 04:47:13,016
WAITING PERIOD WHEN WE KNEW

8711
04:47:13,016 --> 04:47:14,684
SOMETHING WAS GOING ON THAT HE

8712
04:47:14,684 --> 04:47:16,219
NEEDED TO BE EVALUATED.

8713
04:47:16,219 --> 04:47:18,655
HE WAS ON 3 DIFFERENT LISTS FOR

8714
04:47:18,655 --> 04:47:20,523
AN EVALUATION AND ALL 3 OF THEM

8715
04:47:20,523 --> 04:47:21,691
WERE 8 MONTHS LONG.

8716
04:47:21,691 --> 04:47:24,994
SO THAT WAS A VERY LONG AND

8717
04:47:24,994 --> 04:47:27,964
DIFFICULT AND SCARY STRETCH.

8718
04:47:27,964 --> 04:47:29,799
I THINK SOMETHING THAT WE'VE

8719
04:47:29,799 --> 04:47:32,202
ECHOES THROUGH THIS AFTERNOON

8720
04:47:32,202 --> 04:47:35,004
JUST LISTENING IS THAT FOR ME,

8721
04:47:35,004 --> 04:47:36,606
AND FOR US, THE GREATEST THING

8722
04:47:36,606 --> 04:47:41,244
IN THE BEGINNING WAS THE AUTISM

8723
04:47:41,244 --> 04:47:44,614
SOCIETY, OUR LOCAL CHAPTER--HI,

8724
04:47:44,614 --> 04:47:44,981
KIM--[LAUGHTER]

8725
04:47:44,981 --> 04:47:50,386
, OUR LOCAL CHAPTER IN ASA

8726
04:47:50,386 --> 04:47:51,020
AROUND HARRISBURG, PENNSYLVANIA.

8727
04:47:51,020 --> 04:47:52,388
IT WAS THROUGH THE OTHER PARENTS

8728
04:47:52,388 --> 04:47:53,923
THAT I LEARNED WHO CAN GIVE THIS

8729
04:47:53,923 --> 04:47:56,059
KID A HAIR CUT, WHO'S THE BEST

8730
04:47:56,059 --> 04:47:58,027
DENTIST, WHAT ARE WE GOING TO

8731
04:47:58,027 --> 04:47:58,495
DO?

8732
04:47:58,495 --> 04:48:02,198
HOW DO I NAVIGATE THIS OR THAT?

8733
04:48:02,198 --> 04:48:04,167
SO OTHER PATIENTS WERE THE MOST

8734
04:48:04,167 --> 04:48:04,801
AMAZING AFFECT.

8735
04:48:04,801 --> 04:48:06,302
I REMEMBER WALKING INTO THE

8736
04:48:06,302 --> 04:48:07,203
AUTISM SOCIETY MEETING FOR THE

8737
04:48:07,203 --> 04:48:09,139
FIRST TIME AND I WALKED IN AND

8738
04:48:09,139 --> 04:48:10,507
HERE ARE ALL THESE PEOPLE KIND

8739
04:48:10,507 --> 04:48:14,611
OF LAUGHING AND SMILING AND

8740
04:48:14,611 --> 04:48:16,312
HAVING A GOOD TIME.

8741
04:48:16,312 --> 04:48:17,647
I REMEMBER THINKING HOW CAN THEY

8742
04:48:17,647 --> 04:48:19,816
BE HAPPY, THIS IS SERIOUS AND

8743
04:48:19,816 --> 04:48:21,351
THEN IN NO TIME I REALIZED IT

8744
04:48:21,351 --> 04:48:22,919
WAS A GROUP OF COMRADES, A GROUP

8745
04:48:22,919 --> 04:48:25,789
OF PEOPLE WHO WERE SHARING

8746
04:48:25,789 --> 04:48:27,123
EXPERIENCES AND WE REALLY--IT

8747
04:48:27,123 --> 04:48:28,491
WAS OKAY TO BE TOGETHER AND

8748
04:48:28,491 --> 04:48:31,394
LAUGH AND BE TOGETHER AND REALLY

8749
04:48:31,394 --> 04:48:33,129
LET YOUR HAIR DOWN AND RELAX.

8750
04:48:33,129 --> 04:48:34,130
SO THAT WAS VERY IMPORTANT.

8751
04:48:34,130 --> 04:48:37,100
ONE THINK THIS I JUST WAS

8752
04:48:37,100 --> 04:48:38,268
THINKING ABOUT IS EARLY ON AND

8753
04:48:38,268 --> 04:48:41,538
IF YOU REMEMBER WHAT WAS GOING

8754
04:48:41,538 --> 04:48:43,006
ON IN 1993 WITH AUTISM, YOU KNOW

8755
04:48:43,006 --> 04:48:47,243
THERE WAS A LOT OF CONTROVERSY,

8756
04:48:47,243 --> 04:48:48,011
WHAT CAUSED THIS?

8757
04:48:48,011 --> 04:48:50,213
WHO DO WE NEED TO SEE WHO CAN

8758
04:48:50,213 --> 04:48:51,848
FIX THIS?

8759
04:48:51,848 --> 04:48:53,283
REMEMBER THAT?

8760
04:48:53,283 --> 04:48:55,518
LIKE IT WAS VACCINES?

8761
04:48:55,518 --> 04:48:55,952
WHAT WAS IT?

8762
04:48:55,952 --> 04:48:56,953
IT'S IN THE AIR?

8763
04:48:56,953 --> 04:48:59,255
WHO KNOWS WHAT IT WAS BUT I

8764
04:48:59,255 --> 04:49:01,124
SUDDENLY HAD AN AQUAKEN 1 DAY

8765
04:49:01,124 --> 04:49:02,759
WHERE I THOUGHT WHAT IF DAN

8766
04:49:02,759 --> 04:49:05,862
THINKS HE'S MOT JUST PERFECT THE

8767
04:49:05,862 --> 04:49:07,730
WAY HE IS, WHAT IF HE READS THAT

8768
04:49:07,730 --> 04:49:09,999
YOU KNOW WE'RE TRYING TO CHANGE

8769
04:49:09,999 --> 04:49:10,233
HIM?

8770
04:49:10,233 --> 04:49:11,568
WHAT HE IF HER CEIVES THAT YOU

8771
04:49:11,568 --> 04:49:14,103
KNOW HE NEEDS TO BE FIXED?

8772
04:49:14,103 --> 04:49:16,306
AND SO SUDDENLY AT THAT TURNING

8773
04:49:16,306 --> 04:49:19,342
POINT, WE JUST TOOK A DIFFERENT

8774
04:49:19,342 --> 04:49:21,911
APPROACH, LIKE WE'RE GOING TO

8775
04:49:21,911 --> 04:49:24,447
SUPPORT HIM AND LOVE HIM AND DO

8776
04:49:24,447 --> 04:49:27,016
ALL WE CAN, BUT HE IS WHO HE IS.

8777
04:49:27,016 --> 04:49:32,021
WHEN HE WAS IN ABOUT THE SECOND

8778
04:49:32,021 --> 04:49:35,158
OR THIRD GRADE, THE SCHOOL

8779
04:49:35,158 --> 04:49:37,093
PSYCHOLOGIST EVALUATED HIM FOR

8780
04:49:37,093 --> 04:49:38,461
INTELLECTUAL DISABILITY SO HE

8781
04:49:38,461 --> 04:49:40,129
GOT THAT DIAGNOSE TACKED ON AND

8782
04:49:40,129 --> 04:49:44,133
MY ATTITUDE AT THE TIME WAS,

8783
04:49:44,133 --> 04:49:45,235
YOU'RE JUST DOING THAT SO YOU

8784
04:49:45,235 --> 04:49:47,103
DON'T HAVE TO WORK AS HARD.

8785
04:49:47,103 --> 04:49:48,137
NO, HE WAS RIGHT.

8786
04:49:48,137 --> 04:49:52,108
HE WAS RIGHT ABOUT THAT

8787
04:49:52,108 --> 04:49:52,375
DIAGNOSIS.

8788
04:49:52,375 --> 04:49:53,910
BUT JUST THOSE KINDS OF HURDLES

8789
04:49:53,910 --> 04:49:58,214
TO GET OVER AND GUEST PAST.

8790
04:49:58,214 --> 04:49:59,983
TO COME PRESENT, DAN HAS A JOB,

8791
04:49:59,983 --> 04:50:02,318
HE WORKED IN A GROCERY STORE IN

8792
04:50:02,318 --> 04:50:05,121
THE PRODUCE DEPARTMENT WITH A

8793
04:50:05,121 --> 04:50:05,421
JOB COACH.

8794
04:50:05,421 --> 04:50:08,458
I'M VERY GRATEFUL HE HAS A

8795
04:50:08,458 --> 04:50:10,360
MEDICAID WAIVER IN PENNSYLVANIA


8796
04:50:10,360 --> 04:50:13,763
THAT--AND WE USE THE MODEL

8797
04:50:13,763 --> 04:50:14,497
CALLED SELF-DIRECTION.

8798
04:50:14,497 --> 04:50:16,733
SO I'M THE COMMON LAW EMPLOYER,

8799
04:50:16,733 --> 04:50:18,635
WE CAN HIRE OUR OWN PEOPLE AND

8800
04:50:18,635 --> 04:50:20,403
IT IS POSITIVELY A GOD SEND AT


8801
04:50:20,403 --> 04:50:21,804
LEAST AT THIS POINT IN LIFE TO

8802
04:50:21,804 --> 04:50:23,640
BE ABLE TO DO THAT.

8803
04:50:23,640 --> 04:50:23,744
I'LL PASS IT ON TO JOE.

8804
04:50:23,744 --> 04:50:27,281
SO JUST A FUNNY LITTLE THING.

8805
04:50:27,281 --> 04:50:30,751
WE HAD A PRE-ZOOM OF THE

8806
04:50:30,751 --> 04:50:32,619
PANELISTS, WAS IT LAST WEEK I

8807
04:50:32,619 --> 04:50:33,411
THINK? AND

8808
04:50:33,411 --> 04:50:35,913
JOE STARTED DESCRIBING FAMILY

8809
04:50:35,913 --> 04:50:37,415
AND WHERE HE LIVES AND HE SAID,

8810
04:50:37,415 --> 04:50:39,117
I LIVE IN HARRISBURG,

8811
04:50:39,117 --> 04:50:39,751
PENNSYLVANIA AND I WOULDN'T, SO

8812
04:50:39,751 --> 04:50:42,053
DO I!

8813
04:50:42,053 --> 04:50:47,759
BUT WE NEVER MET BEFORE.

8814
04:50:47,759 --> 04:50:49,494
>> ARE WE BACK?

8815
04:50:49,494 --> 04:50:49,694
OKAY.

8816
04:50:49,694 --> 04:50:51,796
SO WE CAN PROCEED?

8817
04:50:51,796 --> 04:50:51,996
OKAY.

8818
04:50:51,996 --> 04:50:53,231
THANK YOU SO MUCH.

8819
04:50:53,231 --> 04:50:55,500
AND WE APOLOGIZE TO OUR AUDIENCE

8820
04:50:55,500 --> 04:50:56,034
ON VIDEOCAST.

8821
04:50:56,034 --> 04:50:57,568
WE WERE HAVING TECHNICAL

8822
04:50:57,568 --> 04:50:58,469
DIFFICULTIES, BUT WE'RE JUST

8823
04:50:58,469 --> 04:51:01,239
PICKING UP WITH JOE JOYCE AND

8824
04:51:01,239 --> 04:51:04,275
HIS COMMENTS.

8825
04:51:04,275 --> 04:51:04,609
>> GREAT.

8826
04:51:04,609 --> 04:51:06,344
THANK YOU, DR. DANIELS AND

8827
04:51:06,344 --> 04:51:07,779
EVERYONE ON THE IACC COMMITTEE.

8828
04:51:07,779 --> 04:51:09,747
IT'S A GREAT HONOR TO BE ABLE TO

8829
04:51:09,747 --> 04:51:14,752
SPEAK WITH YOU TODAY.

8830
04:51:14,752 --> 04:51:16,721
MY WIFE ELISE AND I ARE THE

8831
04:51:16,721 --> 04:51:18,690
PARENT OF A YOUNG ADULT, DAVID,

8832
04:51:18,690 --> 04:51:19,791
WHO IS PROFOUNDLY IMPACTED BY

8833
04:51:19,791 --> 04:51:22,226
AUTISM.

8834
04:51:22,226 --> 04:51:24,896
HE IS COMPLETELY NON-VERBAL, AND

8835
04:51:24,896 --> 04:51:27,265
HE HAS VERY SEVERE

8836
04:51:27,265 --> 04:51:29,767
SELF-INJURIOUS BEHAVIORS.

8837
04:51:29,767 --> 04:51:32,236
WE'RE VERY GRATEFUL TO HAVE THE

8838
04:51:32,236 --> 04:51:33,905
OPPORTUNITY TO SHARE SOME OF OUR

8839
04:51:33,905 --> 04:51:34,906
EXPERIENCES WITH ALL OF YOU

8840
04:51:34,906 --> 04:51:36,207
TODAY.

8841
04:51:36,207 --> 04:51:38,376
AND IN FACT, SOME OF YOU MAY

8842
04:51:38,376 --> 04:51:42,213
REMEMBER MEETING DAVID.

8843
04:51:42,213 --> 04:51:44,649
I HAD THE PRIVILEGE OF SPEAKING

8844
04:51:44,649 --> 04:51:49,354
ONCE BEFORE IN 2019 AT AN IACC

8845
04:51:49,354 --> 04:51:51,055
MEET AND DAVID ACCOMPANIED ME TO

8846
04:51:51,055 --> 04:51:53,257
THE MEETING AND GOT THE

8847
04:51:53,257 --> 04:51:56,861
OPPORTUNITY TO MEET MANY OF THE

8848
04:51:56,861 --> 04:51:58,696
PROFESSIONALS ON THE IACC

8849
04:51:58,696 --> 04:52:00,131
COMMITTEE AND I BELIEVE I COULD

8850
04:52:00,131 --> 04:52:01,466
BE WRONG BUT I BELIEVE HE WAS

8851
04:52:01,466 --> 04:52:06,704
THE VERY FIRST PROFOUNDLY

8852
04:52:06,704 --> 04:52:08,306
NON-VERBAL SELF-ADVOCATE TO

8853
04:52:08,306 --> 04:52:12,710
SPEAK AT THE IACC MEETING.

8854
04:52:12,710 --> 04:52:14,345
ACTUALLY I DID A LOT OF THE

8855
04:52:14,345 --> 04:52:17,582
SPEAKING BUT HE -- NON-VERBAL

8856
04:52:17,582 --> 04:52:20,385
DOES NOT MEAN QUIET.

8857
04:52:20,385 --> 04:52:22,220
SO IT GREAT TO BE BACK AND TO

8858
04:52:22,220 --> 04:52:23,988
TALK ABOUT SOME OF THE

8859
04:52:23,988 --> 04:52:28,025
CHALLENGES THAT OUR FAMILY HAS

8860
04:52:28,025 --> 04:52:29,894
FACED AND AS YOU'VE HEARD FROM

8861
04:52:29,894 --> 04:52:34,132
OTHERS, THE SUPPORT SYSTEM FOR

8862
04:52:34,132 --> 04:52:38,002
FAMILIES THAT ARE IMPACTED BY

8863
04:52:38,002 --> 04:52:39,370
PROFOUND AUTISM, IT'S VERY MUCH

8864
04:52:39,370 --> 04:52:40,905
INADEQUATE AND INSUFFICIENT TO

8865
04:52:40,905 --> 04:52:45,510
COVER THEIR NEEDS.

8866
04:52:45,510 --> 04:52:47,678
DAVID WAS DIAGNOSED AT A VERY

8867
04:52:47,678 --> 04:52:49,747
YOUNG AGE WITH AUTISM.

8868
04:52:49,747 --> 04:52:53,151
AND SHORTLY THEREAFTER, HE

8869
04:52:53,151 --> 04:52:55,553
DEVELOPED THE SEVERE SELF

8870
04:52:55,553 --> 04:52:58,856
INJURIOUS BEHAVIORS WHERE AT

8871
04:52:58,856 --> 04:53:01,426
THAT TIME, HE ACTUALLY -- OUR

8872
04:53:01,426 --> 04:53:03,428
TEAM WOULD KEEP DATA WITH

8873
04:53:03,428 --> 04:53:06,364
CLICKERS, AND HE WOULD LITERALLY

8874
04:53:06,364 --> 04:53:10,067
HIT HIMSELF 8,000 TIMES A DAY.

8875
04:53:10,067 --> 04:53:11,836
IT WAS -- IT WAS SO SEVERE THAT

8876
04:53:11,836 --> 04:53:13,204
THEY WOULD ACTUALLY MEASURE IT

8877
04:53:13,204 --> 04:53:16,207
BY THE MINUTE.

8878
04:53:16,207 --> 04:53:18,843
SO IT WAS VERY MUCH A

8879
04:53:18,843 --> 04:53:22,113
HEARTBREAKING EXPERIENCE FOR US

8880
04:53:22,113 --> 04:53:22,547
AS PARENTS.

8881
04:53:22,547 --> 04:53:27,251
DAVID WOULD NOT SMILE, HE JUST

8882
04:53:27,251 --> 04:53:28,586
DIDN'T SEEM TO HAVE JOY IN HIS

8883
04:53:28,586 --> 04:53:30,321
LIFE AND IT WAS EXTREMELY

8884
04:53:30,321 --> 04:53:35,126
HEARTBREAKING FOR US.

8885
04:53:35,126 --> 04:53:36,794
IN ADDITION, EVERY FAMILY'S

8886
04:53:36,794 --> 04:53:39,063
JOURNEY IS VERY UNIQUE.

8887
04:53:39,063 --> 04:53:42,333
OURS IS VERY UNIQUE, I HAVE TO

8888
04:53:42,333 --> 04:53:42,967
SAY, BECAUSE IN ADDITION TO

8889
04:53:42,967 --> 04:53:45,837
DAVID, WE ALSO HAVE ANOTHER SON

8890
04:53:45,837 --> 04:53:49,340
WHO HAS INTELLECTUAL DISABILITY.

8891
04:53:49,340 --> 04:53:51,609
MATT IS 28 YEARS OLD, AND MATT

8892
04:53:51,609 --> 04:53:53,744
HAS DOWN SYNDROME.

8893
04:53:53,744 --> 04:53:58,416
SO RAISING TWO SPECIAL NEEDS

8894
04:53:58,416 --> 04:53:59,050
CHILDREN AT THE SAME TIME THAT

8895
04:53:59,050 --> 04:54:02,119
ARE ONLY 2 1/2 YEARS APART WAS

8896
04:54:02,119 --> 04:54:04,088
GREATLY CHALLENGING, ESPECIALLY

8897
04:54:04,088 --> 04:54:07,892
FOR MY WIFE ELISE, WHO I'LL TALK

8898
04:54:07,892 --> 04:54:10,761
ABOUT MORE IN A FEW MOMENTS.

8899
04:54:10,761 --> 04:54:13,364
BUT SHE WAS SO DEDICATED TO

8900
04:54:13,364 --> 04:54:16,434
RAISING OUR BOYS THAT SHE IS,

8901
04:54:16,434 --> 04:54:21,339
YOU KNOW, MY HERO.

8902
04:54:21,339 --> 04:54:27,378
DAVID, AS I SAID, WOULD REALLY

8903
04:54:27,378 --> 04:54:30,982
BE SEVERELY IMPACTED BY HIS SELF

8904
04:54:30,982 --> 04:54:33,918
INJURIOUS BEHAVIORS, AND IT WAS

8905
04:54:33,918 --> 04:54:36,921
A VERY CHALLENGING TIME FOR US.

8906
04:54:36,921 --> 04:54:38,055
IN ADDITION TO DAVID, WE ALSO

8907
04:54:38,055 --> 04:54:42,226
HAVE A NEUROTYPICAL DAUGHTER WHO

8908
04:54:42,226 --> 04:54:44,195
NOW HAS TWO BEAUTIFUL DAUGHTERS

8909
04:54:44,195 --> 04:54:48,566
OF HER OWN, BUT AS A YOUNG

8910
04:54:48,566 --> 04:54:52,703
PERSON, WITNESSING ALL THE TIME

8911
04:54:52,703 --> 04:54:55,439
SOMEONE HITTING HIMSELF AND

8912
04:54:55,439 --> 04:54:56,641
DOING ALL WE CAN TO KEEP HIM

8913
04:54:56,641 --> 04:54:59,677
SAFE WAS JUST VERY DIFFICULT FOR

8914
04:54:59,677 --> 04:55:02,880
THE WHOLE FAMILY.

8915
04:55:02,880 --> 04:55:03,748
>> THANK YOU.

8916
04:55:03,748 --> 04:55:07,785
AND ONLINE, WE HAVE VONTRIL, IF

8917
04:55:07,785 --> 04:55:09,787
YOU'D LIKE TO GO AHEAD AND

8918
04:55:09,787 --> 04:55:16,761
INTRODUCE YOURSELF.

8919
04:55:16,761 --> 04:55:22,867
>> I DON'T THINK SHE CAN
UNMUTE.

8920
04:55:22,867 --> 04:55:25,570
>> CAN YOU UNMUTE YOURSELF
OR

8921
04:55:25,570 --> 04:55:25,903
CAN OUR IT --

8922
04:55:25,903 --> 04:55:26,437
>> NOW.

8923
04:55:26,437 --> 04:55:27,171
>> THERE WE GO.

8924
04:55:27,171 --> 04:55:28,506
>> CAN YOU HEAR ME NOW?

8925
04:55:28,506 --> 04:55:30,274
>> YES.

8926
04:55:30,274 --> 04:55:32,343
>> HI.

8927
04:55:32,343 --> 04:55:32,877
HELLO.

8928
04:55:32,877 --> 04:55:36,414
MY NAME IS VONTRIL MCLEMORE.

8929
04:55:36,414 --> 04:55:37,281
I'M 70 YEARS YOUNG.

8930
04:55:37,281 --> 04:55:40,184
I'M AN ADVOCATE FOR MY GRANDSON

8931
04:55:40,184 --> 04:55:40,451
TREY.

8932
04:55:40,451 --> 04:55:41,786
I'M A NATIVE TEXAN.

8933
04:55:41,786 --> 04:55:44,722
I'M ALSO A CAREGIVER TO MY

8934
04:55:44,722 --> 04:55:47,658
HUSBAND OF ALMOST 50 YEARS,

8935
04:55:47,658 --> 04:55:49,327
ALFONSO.

8936
04:55:49,327 --> 04:55:54,198
I AM MOM TO ALEX AND JUNIOR, TWO

8937
04:55:54,198 --> 04:55:56,534
NEUROTYPICAL FANTASTIC CHILDREN.

8938
04:55:56,534 --> 04:55:59,036
GRANDMOTHER TO TREY, WHO IS

8939
04:55:59,036 --> 04:56:03,174
AUTISTIC, AND HAS IDD.

8940
04:56:03,174 --> 04:56:06,911
AND TRINITY, MY GRANDDAUGHTER

8941
04:56:06,911 --> 04:56:08,980
GAVIN, MY GRANDSON, WHO HAS

8942
04:56:08,980 --> 04:56:15,453
DYSLEXIA AND LOS ANGELES TON.

8943
04:56:15,453 --> 04:56:15,886
 LANGSTON.

8944
04:56:15,886 --> 04:56:17,321
TREY WAS VOCAL WHEN HE WAS BORN

8945
04:56:17,321 --> 04:56:18,990
AND AROUND 18 MONTH TO TWO

8946
04:56:18,990 --> 04:56:19,657
YEARS, SOMETHING HAPPENED AND WE

8947
04:56:19,657 --> 04:56:21,058
DON'T KNOW WHAT IT WAS, BUT WE

8948
04:56:21,058 --> 04:56:23,561
CONNECTED TO A FEVER THAT HE

8949
04:56:23,561 --> 04:56:26,297
CONTRACTED IN HIS VERY YOUNG

8950
04:56:26,297 --> 04:56:28,165
TODDLER YEARS.

8951
04:56:28,165 --> 04:56:32,770
AND AFTER THAT FEVER, AND HE

8952
04:56:32,770 --> 04:56:34,105
RECOVERED, WE NOTICED THAT HE

8953
04:56:34,105 --> 04:56:37,274
HAD LOST HIS ABILITY TO SPEAK,

8954
04:56:37,274 --> 04:56:40,411
BUT HE COULD COMPREHEND AND

8955
04:56:40,411 --> 04:56:42,380
FOLLOW DIRECTIONS, HE COULD TAKE

8956
04:56:42,380 --> 04:56:43,047
ORDERS, BUT HE COULD NOT

8957
04:56:43,047 --> 04:56:44,448
VERBALIZE TO YOU WHAT YOU WANTED

8958
04:56:44,448 --> 04:56:46,550
HIM TO DO.

8959
04:56:46,550 --> 04:56:48,519
AND MY DAUGHTER AND I WERE

8960
04:56:48,519 --> 04:56:49,053
CONCERNED ABOUT IT.

8961
04:56:49,053 --> 04:56:51,022
HIS PARENTS WERE YOUNG, AND THEY

8962
04:56:51,022 --> 04:56:52,223
WERE TOLD AND THEY THOUGHT THAT,

8963
04:56:52,223 --> 04:56:54,225
YOU KNOW, HE WOULD GROW OUT OF

8964
04:56:54,225 --> 04:56:55,526
IT.

8965
04:56:55,526 --> 04:56:56,727
BUT MY DAUGHTER AND I WERE NOT

8966
04:56:56,727 --> 04:56:57,595
OF THAT OPINION.

8967
04:56:57,595 --> 04:57:01,999
SO WE HAD DELVED INTO AUTISM AT

8968
04:57:01,999 --> 04:57:09,206
THE TIME, AROUND 2022, 23, TREY

8969
04:57:09,206 --> 04:57:12,610
WAS BORN IN 2001 -- 2004, I'M

8970
04:57:12,610 --> 04:57:12,910
SORRY.

8971
04:57:12,910 --> 04:57:15,746
I'M GETTING TONGUE TIED.

8972
04:57:15,746 --> 04:57:16,714
BUT ANYWAY WE WERE NOT OF THAT

8973
04:57:16,714 --> 04:57:17,048
OPINION.

8974
04:57:17,048 --> 04:57:19,050
SO I HAD A DOCTOR LOOK AT HIM

8975
04:57:19,050 --> 04:57:22,953
AND HE WAS DIAGNOSED AT ABOUT

8976
04:57:22,953 --> 04:57:27,458
3 YEARS OLD WITH AUTISM AND IDD.

8977
04:57:27,458 --> 04:57:29,393
AND YETTA, THAT DOCTOR WAS ALSO

8978
04:57:29,393 --> 04:57:29,860
A WHITE DOCTOR.

8979
04:57:29,860 --> 04:57:31,595
HE'S NO LONGER WITH US IN THE

8980
04:57:31,595 --> 04:57:33,230
NATURAL, BUT DR. MANDALE WAS A

8981
04:57:33,230 --> 04:57:36,333
LIFE SAVER IN THAT REGARD.

8982
04:57:36,333 --> 04:57:41,906
TREY IS HAPPENED S HANDSOME, KI,

8983
04:57:41,906 --> 04:57:43,774
COMPASSIONATE, EMPATHETIC, HE'S

8984
04:57:43,774 --> 04:57:45,276
GIVING, HE MAKES A MEAN BED, HE

8985
04:57:45,276 --> 04:57:47,244
TAKES TRASH OUT, HE LOADS THE

8986
04:57:47,244 --> 04:57:48,479
DISHWASHER, HE HELPS ME CARE FOR

8987
04:57:48,479 --> 04:57:51,649
HIS GRANDDAD, SO AS MUCH OF A

8988
04:57:51,649 --> 04:57:53,718
BLESSING AS WE'VE BEEN TO HIM,

8989
04:57:53,718 --> 04:57:55,586
HE HAS BEEN FOR US.

8990
04:57:55,586 --> 04:57:56,887
HE'S HIGH FUNCTIONING.

8991
04:57:56,887 --> 04:57:59,523
HE HAS ASPIRATIONS AND DREAMS.

8992
04:57:59,523 --> 04:58:03,360
ONE OF THOSE DREAMS IS TO LI LIE

8993
04:58:03,360 --> 04:58:04,662
IN ONE OF THE MOST AFFLUENT

8994
04:58:04,662 --> 04:58:08,699
AREAS IN OUR NECK OF THE DFW

8995
04:58:08,699 --> 04:58:10,101
METROPLEX, WHICH IS DALLAS,

8996
04:58:10,101 --> 04:58:10,301
TEXAS.

8997
04:58:10,301 --> 04:58:12,536
IT'S CALLED PLANO, TEXAS.

8998
04:58:12,536 --> 04:58:16,207
HE AND I DRIVE AROUND EVERY

8999
04:58:16,207 --> 04:58:19,110
SUNDAY AFTER CHURCH, AND HE

9000
04:58:19,110 --> 04:58:21,278
DAYDREAMS ABOUT LIVING IN A

9001
04:58:21,278 --> 04:58:23,681
HOUSE IN THIS VERY AFFLUENT

9002
04:58:23,681 --> 04:58:25,916
AREA, A MILLION TO $2 MILLION.

9003
04:58:25,916 --> 04:58:27,952
I DON'T HAVE THE HEART TO TELL

9004
04:58:27,952 --> 04:58:31,222
THIS YOUNG MAN, HEY, THIS IS NOT

9005
04:58:31,222 --> 04:58:34,625
SOMETHING WITHIN OUR -- WITHIN

9006
04:58:34,625 --> 04:58:35,826
OUR ECONOMIC STRATA TO FULFILL

9007
04:58:35,826 --> 04:58:37,361
RIGHT NOW.

9008
04:58:37,361 --> 04:58:40,297
HE WORKS AT FIVE BELOW AND HE'S

9009
04:58:40,297 --> 04:58:41,966
BEEN THERE SINCE SEPTEMBER.

9010
04:58:41,966 --> 04:58:45,402
HE WAS AWARDED THE EMPLOYEE OF

9011
04:58:45,402 --> 04:58:48,839
THE MONTH AFTER ONLY TWO MONTHS.

9012
04:58:48,839 --> 04:58:52,777
SORE HE WAS ABLE TO SECURE THIS

9013
04:58:52,777 --> 04:58:57,047
JOB WITH THE TEXAS WORKFORCE

9014
04:58:57,047 --> 04:58:57,348
COMMISSION.

9015
04:58:57,348 --> 04:59:00,117
AND I KNOW I'VE HEARD OUR

9016
04:59:00,117 --> 04:59:02,052
REPORTS FROM SOME PEOPLE ABOUT

9017
04:59:02,052 --> 04:59:04,588
HOW THE TEXAS WORKFORCE

9018
04:59:04,588 --> 04:59:06,891
COMMISSION WAS NOT HELPFUL TO

9019
04:59:06,891 --> 04:59:07,858
THEM, TOTALLY THE CONTRARY.

9020
04:59:07,858 --> 04:59:10,294
THEY WERE A VERY BIG HELP FOR

9021
04:59:10,294 --> 04:59:12,763
US, ALONG WITH QUEST EMPLOYMENT,

9022
04:59:12,763 --> 04:59:14,532
THEY WERE THE ONES THAT TOOK

9023
04:59:14,532 --> 04:59:18,736
TREY OUT LAST SUMMER ONCE A

9024
04:59:18,736 --> 04:59:21,038
WEEK, THREE TO FOUR JOB

9025
04:59:21,038 --> 04:59:24,542
PROSPECTS A DAY, AND HE FINALLY

9026
04:59:24,542 --> 04:59:26,277
DECIDED THAT FIVE BELOW WAS A

9027
04:59:26,277 --> 04:59:27,211
GOOD FIT.

9028
04:59:27,211 --> 04:59:28,579
AND AS FATE WOULD HAVE IT, THE

9029
04:59:28,579 --> 04:59:30,548
MANAGER FOR FIVE BELOW ALSO HAD

9030
04:59:30,548 --> 04:59:34,151
AN YO AUTISTIC SON AND THE MANAR

9031
04:59:34,151 --> 04:59:36,120
THERE AND THE LINE PERSON AS

9032
04:59:36,120 --> 04:59:38,088
WELL HAD AUTISTIC LOVED ONES.

9033
04:59:38,088 --> 04:59:41,058
SO HAD IT NOT BEEN FOR THE TEXAS

9034
04:59:41,058 --> 04:59:43,127
WORKFORCE COMMISSION AND QUEST

9035
04:59:43,127 --> 04:59:45,863
EMPLOYMENT, WE MAY NOT HAVE EVEN

9036
04:59:45,863 --> 04:59:48,365
KNOWN IF ALFONSO -- OR TREY WAS

9037
04:59:48,365 --> 04:59:50,234
ABLE TO WORK.

9038
04:59:50,234 --> 04:59:51,902
TO HOLD A GAINFUL EMPLOYMENT.

9039
04:59:51,902 --> 04:59:57,341
WE'VE BEEN HIS CAREGIVERS SINCE

9040
04:59:57,341 --> 04:59:58,275
5/28/22, WHICH COINCIDENTALLY

9041
04:59:58,275 --> 04:59:59,543
WAS DATE HE GRADUATED FROM HIGH

9042
04:59:59,543 --> 05:00:00,845
SCHOOL.

9043
05:00:00,845 --> 05:00:03,614
HE'S BEEN A COMPONENT OF OUR I

9044
05:00:03,614 --> 05:00:06,016
LOVE EVER SINCE HE WAS BORN.

9045
05:00:06,016 --> 05:00:08,619
ON LONG VACATIONS, HOLIDAYS, AND

9046
05:00:08,619 --> 05:00:10,955
THAT SORT OF THING.

9047
05:00:10,955 --> 05:00:12,256
BUT NOT BEING A PERMANENT

9048
05:00:12,256 --> 05:00:14,558
CAREGIVER TO HIM, THAT WAS --

9049
05:00:14,558 --> 05:00:16,994
THERE WAS A TRANSITION.

9050
05:00:16,994 --> 05:00:22,032
BEING A BLACK MAN WITH

9051
05:00:22,032 --> 05:00:24,201
NEURODIVERSITY, LIVING AT THE

9052
05:00:24,201 --> 05:00:25,636
INTERSECTION OF CLASS, RACE AND

9053
05:00:25,636 --> 05:00:29,340
CULTURE DYNAMICS, THERE ARE MANY

9054
05:00:29,340 --> 05:00:32,309
CONCERNS FOR HIS SAFETY AS HE

9055
05:00:32,309 --> 05:00:37,214
NOVEMBER GNAVIGATES THE PRESENT.

9056
05:00:37,214 --> 05:00:38,015
NOT ONLY IS POLICE BRUTALITY

9057
05:00:38,015 --> 05:00:40,551
UPPERMOST IN OUR MINDS, BUT

9058
05:00:40,551 --> 05:00:42,086
VIGILANTE CITIZEN ON CITIZEN

9059
05:00:42,086 --> 05:00:48,125
CRIME IS ALWAYS A CONCERN.

9060
05:00:48,125 --> 05:00:49,326
DRIVING A VEHICLE PRESENTS

9061
05:00:49,326 --> 05:00:50,961
ANOTHER DILEMMA, SINCE WE THINK

9062
05:00:50,961 --> 05:00:54,465
THAT TREY IS ABLE TO DRIVE, BUT

9063
05:00:54,465 --> 05:00:56,033
AS WE KNOW, DRIVING IS MORE THAN

9064
05:00:56,033 --> 05:00:58,302
JUST MAKING CONTACT WITH A PEDAL

9065
05:00:58,302 --> 05:01:00,371
AND BRAKE.

9066
05:01:00,371 --> 05:01:03,974
IT'S ALSO AS A BLACK PARENT AND

9067
05:01:03,974 --> 05:01:05,276
CAREGIVER THE ABILITY TO MAKE IT

9068
05:01:05,276 --> 05:01:07,912
HOME SAFELY EVERY NIGHT.

9069
05:01:07,912 --> 05:01:09,847
WE FEEL HE'S CAPABLE OF LEARNING

9070
05:01:09,847 --> 05:01:13,817
BUT WITH AUTISM AND IDD, WE ARE

9071
05:01:13,817 --> 05:01:15,352
EQUALLY CONCERNED HIS REACTION

9072
05:01:15,352 --> 05:01:18,289
TIME IS DELAYED, HIS

9073
05:01:18,289 --> 05:01:20,357
COMPREHENSION IS DELAYED AND

9074
05:01:20,357 --> 05:01:22,459
EVEN UNDER THE BEST OF

9075
05:01:22,459 --> 05:01:25,195
CIRCUMSTANCES, WE WOULD HAVE

9076
05:01:25,195 --> 05:01:28,465
CONCERNED ABOUT HIS DRIVING.

9077
05:01:28,465 --> 05:01:31,735
SO OUR SON WHO WAS TREY'S DAD

9078
05:01:31,735 --> 05:01:36,006
WHO'S NEUROTYPICAL HAS HAD

9079
05:01:36,006 --> 05:01:36,974
SEVERAL NEGATIVE INTERACTIONS

9080
05:01:36,974 --> 05:01:38,542
WITH LAW ENFORCEMENT.

9081
05:01:38,542 --> 05:01:41,178
TREY, WITH AUTISM, THE INVISIBLE

9082
05:01:41,178 --> 05:01:43,147
CONDITION, AT FIRST GLANCE

9083
05:01:43,147 --> 05:01:46,216
APPEARS NEUROTYPICAL BUT HAS

9084
05:01:46,216 --> 05:01:48,585
COGNITIVE ISSUES THAT AREN'T

9085
05:01:48,585 --> 05:01:50,921
READILY AVAILABLE TO LAW

9086
05:01:50,921 --> 05:01:53,290
ENFORCEMENT.

9087
05:01:53,290 --> 05:01:56,260
THEY MAY MISCONSTRUE TREY'S

9088
05:01:56,260 --> 05:01:59,663
CONDITION AS, QUOTE, FAILURE TO

9089
05:01:59,663 --> 05:02:02,967
COMPLY, RUDENESS, OR JUST PLAIN

9090
05:02:02,967 --> 05:02:04,568
ARROGANCE, CLOSED QUOTE, AND

9091
05:02:04,568 --> 05:02:05,703
THAT'S ANOTHER ISSUE THAT WE ARE

9092
05:02:05,703 --> 05:02:08,772
QUITE CONCERNED WITH.

9093
05:02:08,772 --> 05:02:10,507
AND ON THE LIGHTER SIDE OF THIS,

9094
05:02:10,507 --> 05:02:12,309
MY GRANDSON IS A VERY HANDSOME

9095
05:02:12,309 --> 05:02:12,810
YOUNG MAN.

9096
05:02:12,810 --> 05:02:13,911
HE LIKES TO DRESS UP, HE LIKES

9097
05:02:13,911 --> 05:02:17,948
TO GET HIS HAIR CUT AND ALL THE

9098
05:02:17,948 --> 05:02:19,049
LATEST STYLES, AND NOW THE THING

9099
05:02:19,049 --> 05:02:21,452
HE WANTS TO DO WITH HIS HAIR IS

9100
05:02:21,452 --> 05:02:21,986
SPONG.

9101
05:02:21,986 --> 05:02:24,021
HE WANTS HIS HAIR SPONGED SO

9102
05:02:24,021 --> 05:02:25,856
THAT HE CAN GET DREAD LOCKS.

9103
05:02:25,856 --> 05:02:27,291
THOSE OF WHO YOU ARE OF THE

9104
05:02:27,291 --> 05:02:28,158
BLACK CULTURE MAY KNOW SOMETHING

9105
05:02:28,158 --> 05:02:29,827
ABOUT THAT, BUT THAT'S SOMETHING

9106
05:02:29,827 --> 05:02:30,794
HE'S LOOKING FORWARD TO AND WE

9107
05:02:30,794 --> 05:02:33,097
ARE ENCOURAGING HIS CREATIVITY

9108
05:02:33,097 --> 05:02:35,499
IN EVERY WAY THAT WE CAN.

9109
05:02:35,499 --> 05:02:39,670
AND FINALLY, I'D LIKE TO SAY

9110
05:02:39,670 --> 05:02:41,438
THAT A SOCIAL LIFE IS NOT OUT OF

9111
05:02:41,438 --> 05:02:43,607
THE REALM OF POSSIBILITY FOR OUR

9112
05:02:43,607 --> 05:02:45,342
GRANDSON, BUT HERE AGAIN, THERE

9113
05:02:45,342 --> 05:02:48,212
ARE NO RESOURCES AVAILABLE WHERE

9114
05:02:48,212 --> 05:02:52,483
HE CAN MEET SOMEONE, AND MY

9115
05:02:52,483 --> 05:02:55,152
COUSIN HAS A SON WHO'S VISUALLY

9116
05:02:55,152 --> 05:02:57,187
IMPAIRED AND WE HAD THIS

9117
05:02:57,187 --> 05:02:58,589
CONVERSATION A COUPLE WEEKS AGO.

9118
05:02:58,589 --> 05:03:03,660
SHE SAID, CUZ, MY SON WANTS TO

9119
05:03:03,660 --> 05:03:05,095
MEET SOMEBODY, HE WANTS TO DATE

9120
05:03:05,095 --> 05:03:06,830
AND SEE IF HE CAN DATE, YOU

9121
05:03:06,830 --> 05:03:09,099
KNOW, AND DO ALL THE NORMAL

9122
05:03:09,099 --> 05:03:09,333
THINGS.

9123
05:03:09,333 --> 05:03:09,900
HE'S ABLE TO DO THAT.

9124
05:03:09,900 --> 05:03:11,869
AND I TOLD HER, OKAY, WE'LL WORK

9125
05:03:11,869 --> 05:03:12,302
ON THAT.

9126
05:03:12,302 --> 05:03:15,406
SO IF ANYBODY KNOWS OF A DATING

9127
05:03:15,406 --> 05:03:18,442
SITE THAT A YOUNG MAN CAN GO AND

9128
05:03:18,442 --> 05:03:22,713
BE SAFE AND POSSIBLY GET TO MEET

9129
05:03:22,713 --> 05:03:24,715
SOMEBODY ONLINE, I WOULD

9130
05:03:24,715 --> 05:03:25,149
APPRECIATE THAT.

9131
05:03:25,149 --> 05:03:27,885
SO I WANT TO THANK YOU ALL FOR

9132
05:03:27,885 --> 05:03:29,520
THIS BRAVE SAFE SPACE, AND FOR

9133
05:03:29,520 --> 05:03:31,422
THE EQUITY, DIVERSITY AND

9134
05:03:31,422 --> 05:03:32,089
INCLUSION THAT I SEE HERE TODAY.

9135
05:03:32,089 --> 05:03:33,891
THANK YOU FOR HAVING ME.

9136
05:03:33,891 --> 05:03:36,427
>> THANK YOU SO MUCH.

9137
05:03:36,427 --> 05:03:37,761
AND I'M GOING TO SKIP TO OUR

9138
05:03:37,761 --> 05:03:38,595
THIRD QUESTION BECAUSE I THINK

9139
05:03:38,595 --> 05:03:40,030
WE'VE COVERED SOME OF THE

9140
05:03:40,030 --> 05:03:42,433
CHALLENGES IN OUR INTRODUCTORY

9141
05:03:42,433 --> 05:03:42,699
QUESTION.

9142
05:03:42,699 --> 05:03:43,967
AND I'D LIKE TO ASK EACH OF YOU

9143
05:03:43,967 --> 05:03:46,170
TO COMMENT ON WHAT KINDS OF

9144
05:03:46,170 --> 05:03:48,105
RESOURCES OR SUPPORTS YOU FEEL

9145
05:03:48,105 --> 05:03:50,240
ARE MOST NEEDED FOR CAREGIVERS.

9146
05:03:50,240 --> 05:03:51,642
AND THINGS THAT YOU'D

9147
05:03:51,642 --> 05:03:53,043
ASPIRATIONALLY LIKE TO SEE

9148
05:03:53,043 --> 05:03:54,812
DEVELOPED TO HELP YOU IN YOUR

9149
05:03:54,812 --> 05:03:56,246
CAREGIVING ROLES OR YOUR FUTURE

9150
05:03:56,246 --> 05:04:06,557
CAREGIVING ROLES.

9151
05:04:09,893 --> 05:04:12,129
ARE YOU OKAY TO BE THE FIRST,

9152
05:04:12,129 --> 05:04:12,362
LINDSEY?

9153
05:04:12,362 --> 05:04:12,663
>> I'M FINE.

9154
05:04:12,663 --> 05:04:14,865
BUT I'M WONDERING IF I CAN

9155
05:04:14,865 --> 05:04:16,567
ACTUALLY SKIP THREE AND DO TWO

9156
05:04:16,567 --> 05:04:16,800
INSTEAD.

9157
05:04:16,800 --> 05:04:17,501
>> SURE.

9158
05:04:17,501 --> 05:04:17,768
GO AHEAD.

9159
05:04:17,768 --> 05:04:19,803
SO THE SECOND QUESTION WAS ABOUT

9160
05:04:19,803 --> 05:04:20,804
CHALLENGES YOU'VE EXPERIENCED AS

9161
05:04:20,804 --> 05:04:22,673
YOU CARED FOR YOUR LOVED ONES.

9162
05:04:22,673 --> 05:04:23,006
SO GO AHEAD.

9163
05:04:23,006 --> 05:04:24,141
>> I'LL SHARE THAT INSTEAD
OF

9164
05:04:24,141 --> 05:04:25,943
THREE AND I'LL LET EVERYONE ELSE

9165
05:04:25,943 --> 05:04:28,812
SHARE THREE.

9166
05:04:28,812 --> 05:04:29,780
SO AS FAR AS JUST -- I'M GOING

9167
05:04:29,780 --> 05:04:32,416
TO JUST MENTION A FEW UNIQUE

9168
05:04:32,416 --> 05:04:33,150
CHALLENGES.

9169
05:04:33,150 --> 05:04:36,920
SO I'VE MET THOUSANDS OF PEOPLE

9170
05:04:36,920 --> 05:04:37,521
IN THE AUTISM COMMUNITY BOTH

9171
05:04:37,521 --> 05:04:38,922
PERSONALLY AND PROFESSIONALLY.

9172
05:04:38,922 --> 05:04:40,290
I'VE ENCOUNTERED FAMILIES WITH

9173
05:04:40,290 --> 05:04:42,526
MULTIPLE AUTISTIC CHILDREN,

9174
05:04:42,526 --> 05:04:47,431
SICIALG PAISIBLING PAIRS AND NEL

9175
05:04:47,431 --> 05:04:49,099
SIBLINGS OF PEOPLE WITH HIGH

9176
05:04:49,099 --> 05:04:50,067
SUPPORT NEEDS HOWEVER I DON'T

9177
05:04:50,067 --> 05:04:51,502
RECALL MEETING ANYONE WITH A

9178
05:04:51,502 --> 05:04:53,704
FAMILY STORY QUITE LIKE MINE,

9179
05:04:53,704 --> 05:04:56,006
WHERE TWO SIBLINGS HAVE THE SAME

9180
05:04:56,006 --> 05:04:58,609
DIAGNOSIS BUT VERY DIFFERENT

9181
05:04:58,609 --> 05:04:58,942
PRESENTATIONS.

9182
05:04:58,942 --> 05:05:01,145
IT'S A UNIQUE POSITION FOR ME TO

9183
05:05:01,145 --> 05:05:02,813
BE IN.

9184
05:05:02,813 --> 05:05:04,781
IT'S ALSO AT TIMES A LONELY

9185
05:05:04,781 --> 05:05:05,315
POSITION.

9186
05:05:05,315 --> 05:05:08,485
I OFTEN FEEL LIKE I'M NOT FULLY

9187
05:05:08,485 --> 05:05:12,222
ACCEPTED DUE TO MY UNIQUE

9188
05:05:12,222 --> 05:05:13,557
DUALITY OF ROLES AND DEEP

9189
05:05:13,557 --> 05:05:14,758
PERSONAL EXPERIENCE WITH VARIOUS

9190
05:05:14,758 --> 05:05:15,626
ASPECTS OF AUTISM.

9191
05:05:15,626 --> 05:05:19,129
AND I FEEL AN INTENSE PRESSURE

9192
05:05:19,129 --> 05:05:21,665
TO MAKE SURE I AM NOT SAYING THE

9193
05:05:21,665 --> 05:05:24,067
INCORRECT WORDS OR PHRASES AND

9194
05:05:24,067 --> 05:05:26,503
THAT IS DIFFICULT BECAUSE WHAT

9195
05:05:26,503 --> 05:05:29,673
IS DEFINED AS CORRECT OR

9196
05:05:29,673 --> 05:05:32,075
INCORRECT IS SUBJECTIVE.

9197
05:05:32,075 --> 05:05:33,477
ENSURING MY BROTHER'S SAFETY IS

9198
05:05:33,477 --> 05:05:36,280
ONE OF MY TOP CONCERNS AND

9199
05:05:36,280 --> 05:05:37,147
PRIORITIES.

9200
05:05:37,147 --> 05:05:39,783
NON-SPEAKING INDIVIDUALS WHO USE

9201
05:05:39,783 --> 05:05:40,551
UNTRANSLATABLE COMMUNICATION

9202
05:05:40,551 --> 05:05:43,053
METHODS ARE PARTICULARLY

9203
05:05:43,053 --> 05:05:44,922
VULNERABLE, EVEN IN HIGH QUALITY

9204
05:05:44,922 --> 05:05:46,356
RESIDENTIAL PLACEMENTS,

9205
05:05:46,356 --> 05:05:48,091
INCIDENTS CAN SLIP THROUGH THE

9206
05:05:48,091 --> 05:05:48,559
CRACKS.

9207
05:05:48,559 --> 05:05:52,529
A FEW YEARS AGO, JAMES WAS

9208
05:05:52,529 --> 05:06:00,404
SEXUALLY ASSAULTED BY A --

9209
05:06:00,404 --> 05:06:10,614
[LOST AUDIO]

9210
05:06:12,482 --> 05:06:13,183
 -- NO IDEA.

9211
05:06:13,183 --> 05:06:15,018
THE DETAILED NOTES IN HIS DAILY

9212
05:06:15,018 --> 05:06:17,154
REPORT SHOWED NO INDICATION OF

9213
05:06:17,154 --> 05:06:18,555
ANY UNUSUAL BEHAVIOR DURING THE

9214
05:06:18,555 --> 05:06:19,756
TIME IN QUESTION.

9215
05:06:19,756 --> 05:06:23,193
THERE WAS NO EVIDENCE.

9216
05:06:23,193 --> 05:06:25,996
AND THIS LEADS INTO ONE MORE

9217
05:06:25,996 --> 05:06:26,563
SIGNIFICANT CHALLENGE THAT I

9218
05:06:26,563 --> 05:06:29,399
WOULD LIKE TO SHARE.

9219
05:06:29,399 --> 05:06:32,502
I HAVE AN OLD FAMILY VIDEO OF MY

9220
05:06:32,502 --> 05:06:34,671
BROTHER'S FIRST BIRTHDAY.

9221
05:06:34,671 --> 05:06:37,407
WHICH I RARELY WATCH BECAUSE

9222
05:06:37,407 --> 05:06:40,143
IT'S TOO EMOTIONAL.

9223
05:06:40,143 --> 05:06:44,314
ONE DAY, I RE-WATCHED IT, AND I

9224
05:06:44,314 --> 05:06:47,584
CANNOT HELP BUT WEEP

9225
05:06:47,584 --> 05:06:48,685
INCESSANTLY.

9226
05:06:48,685 --> 05:06:51,121
SEEING THAT PRECIOUS RED HAIRED

9227
05:06:51,121 --> 05:06:53,223
LITTLE BOY LAUGHING AND SMILING,

9228
05:06:53,223 --> 05:06:54,958
SITTING IN HIS HIGHCHAIR WHILE

9229
05:06:54,958 --> 05:06:57,928
BEING PRESENTED WITH A SMALL

9230
05:06:57,928 --> 05:06:59,563
BIRTHDAY CAKE, AS TEARS HAD

9231
05:06:59,563 --> 05:07:02,399
ROLLED DOWN MY FACE, I SPOKE OUT

9232
05:07:02,399 --> 05:07:04,901
LOUD IN FRONT OF THE TV SCREEN

9233
05:07:04,901 --> 05:07:09,506
AND I SAID, I'M SO SORRY, JAMES,

9234
05:07:09,506 --> 05:07:12,576
THAT WE HAD TO GIVE YOU UP.

9235
05:07:12,576 --> 05:07:14,645
I'M SO SORRY THAT I HAVE NOT

9236
05:07:14,645 --> 05:07:17,748
BEEN ABLE TO BE THERE FOR YOU.

9237
05:07:17,748 --> 05:07:20,150
WHEN A FAMILY MEMBER LEAVES FOR

9238
05:07:20,150 --> 05:07:23,220
RESIDENTIAL CARE, THAT GUILT

9239
05:07:23,220 --> 05:07:24,855
LINGERS INDEFINITELY.

9240
05:07:24,855 --> 05:07:28,058
AS A SIBLING, YOU NEVER WANT TO

9241
05:07:28,058 --> 05:07:30,894
FEEL LIKE YOU'RE ABANDONING YOUR

9242
05:07:30,894 --> 05:07:32,095
BROTHER OR SISTER.

9243
05:07:32,095 --> 05:07:34,731
I WISH I HAD THAT CAPABILITY AND

9244
05:07:34,731 --> 05:07:35,932
RESOURCES TO TAKE CARE OF MY

9245
05:07:35,932 --> 05:07:38,402
BROTHER ON MY OWN, BUT I SIMPLY

9246
05:07:38,402 --> 05:07:39,569
DO NOT.

9247
05:07:39,569 --> 05:07:41,071
OUR RESOURCES AND ABILITY TO

9248
05:07:41,071 --> 05:07:43,940
CARE FOR HIM DWINDLED AS HE GREW

9249
05:07:43,940 --> 05:07:45,676
STRONGER AND HIS MELTDOWNS AND

9250
05:07:45,676 --> 05:07:47,678
SELF INJURIOUS EPISODES BECAME

9251
05:07:47,678 --> 05:07:48,979
MORE UNPREDICTABLE.

9252
05:07:48,979 --> 05:07:51,281
I STILL WONDER HOW AND WHY OUR

9253
05:07:51,281 --> 05:07:53,050
PATHS ENDED UP IN DIFFERENT

9254
05:07:53,050 --> 05:07:55,118
PLACES, EVEN WHEN WE STARTED ON

9255
05:07:55,118 --> 05:07:55,552
THE SAME PATH.

9256
05:07:55,552 --> 05:07:58,855
WE SHARED THE SAME DIAGNOSIS,

9257
05:07:58,855 --> 05:08:00,257
PARTICIPATED IN THE SAME EARLY

9258
05:08:00,257 --> 05:08:01,258
INTERVENTION PROGRAMS AND

9259
05:08:01,258 --> 05:08:03,226
BRIEFLY ATTENDED THE SAME

9260
05:08:03,226 --> 05:08:04,661
SPECIAL EDUCATION CLASSES.

9261
05:08:04,661 --> 05:08:06,630
I HAD ACCEPTED THAT I PROBABLY

9262
05:08:06,630 --> 05:08:10,801
WILL NOT FIND AN ANSWER TO THAT

9263
05:08:10,801 --> 05:08:12,002
CURIOSITY, AND THAT'S OKAY,

9264
05:08:12,002 --> 05:08:15,205
BECAUSE MY FOCUS NOW HAS TO BE

9265
05:08:15,205 --> 05:08:16,840
ON HIS FUTURE.

9266
05:08:16,840 --> 05:08:19,576
I HAVE TO KEEP REMINDING MYSELF

9267
05:08:19,576 --> 05:08:22,646
THAT I DID MY BEST.

9268
05:08:22,646 --> 05:08:24,514
AND THAT ACCEPTING OUTSIDE

9269
05:08:24,514 --> 05:08:27,718
SUPPORT IS OKAY.

9270
05:08:27,718 --> 05:08:28,585
JAMES' QUALITY OF LIFE IS BETTER

9271
05:08:28,585 --> 05:08:31,555
NOW WITH THE SUPPORT HE HAS.

9272
05:08:31,555 --> 05:08:33,657
AND MY PARENTS' DECISIONS WERE

9273
05:08:33,657 --> 05:08:35,058
MADE OUT OF LOVE AND A DESIRE

9274
05:08:35,058 --> 05:08:36,593
FOR HIS HAPPINESS.

9275
05:08:36,593 --> 05:08:38,795
NOW I'M REFLECTING ON MY NEXT

9276
05:08:38,795 --> 05:08:41,431
STEPS TO BEST SUPPORT MY BROTHER

9277
05:08:41,431 --> 05:08:42,899
AFTER MY PARENTS PASS, ENSURING

9278
05:08:42,899 --> 05:08:45,135
THAT HE'S PROTECTED FROM

9279
05:08:45,135 --> 05:08:48,438
EXPLOITATION WHILE HONORING HIS

9280
05:08:48,438 --> 05:08:50,540
AUTONOMY.

9281
05:08:50,540 --> 05:08:54,244
>> THANK YOU.

9282
05:08:54,244 --> 05:08:56,313
>> SO IN TERMS OF WHAT
SUPPORTS

9283
05:08:56,313 --> 05:08:58,815
AND RESOURCES ARE NEEDED, MY SON

9284
05:08:58,815 --> 05:09:00,784
IS CURRENTLY IN A NON-PUBLIC AND

9285
05:09:00,784 --> 05:09:02,886
HAS BEEN FOR A NUMBER OF YEARS,

9286
05:09:02,886 --> 05:09:04,521
FULL DISCLOSURE, BECAUSE THE

9287
05:09:04,521 --> 05:09:06,089
LOCAL SCHOOL SYSTEM COULD NOT

9288
05:09:06,089 --> 05:09:08,925
SUPPORT HIM, AND I HAVE GONE DUE

9289
05:09:08,925 --> 05:09:11,161
PROCESS TWICE TO GET HIM INTO

9290
05:09:11,161 --> 05:09:12,763
THESE PLACEMENTS.

9291
05:09:12,763 --> 05:09:14,431
HE TRANSITIONED TO A POST HIGH

9292
05:09:14,431 --> 05:09:16,433
SCHOOL PROGRAM LAST YEAR, WHICH

9293
05:09:16,433 --> 05:09:18,402
WAS REALLY CHALLENGING FOR HIM

9294
05:09:18,402 --> 05:09:20,370
BECAUSE HE WAS THE BIG MAN ON

9295
05:09:20,370 --> 05:09:22,873
CAMPUS, TO BE PERFECTLY HONEST.

9296
05:09:22,873 --> 05:09:24,741
THE RUNNING JOKE IN THE FAMILY

9297
05:09:24,741 --> 05:09:25,909
IS THAT MY SON LITERALLY WAS

9298
05:09:25,909 --> 05:09:27,177
LIKE THE TEACHER ASSISTANT IN

9299
05:09:27,177 --> 05:09:28,145
HIS AUTISM PROGRAM.

9300
05:09:28,145 --> 05:09:29,880
LIKE THAT'S HOW WELL HE WAS

9301
05:09:29,880 --> 05:09:31,047
DOING WITH THE SUPPORTS THAT HE

9302
05:09:31,047 --> 05:09:33,116
HAD IN HIS AUTISM PROGRAM.

9303
05:09:33,116 --> 05:09:35,285
AFTER THE PANDEMIC, I KNEW THAT

9304
05:09:35,285 --> 05:09:36,653
IT WOULD BE BEST FOR HIM TO BE

9305
05:09:36,653 --> 05:09:37,988
IN THE POST HIGH SCHOOL PROGRAM

9306
05:09:37,988 --> 05:09:40,791
AT HIS SCHOOL BECAUSE I KNOW

9307
05:09:40,791 --> 05:09:42,025
ABOUT THE CLIFF THAT HAPPENS

9308
05:09:42,025 --> 05:09:45,862
WHEN YOU TURN 21, 22, RIGHT?

9309
05:09:45,862 --> 05:09:47,731
AND I HAVE REAL CONCERNS ABOUT

9310
05:09:47,731 --> 05:09:48,265
THAT.

9311
05:09:48,265 --> 05:09:52,369
AND SO HE TRANSITIONED AND MY

9312
05:09:52,369 --> 05:09:53,670
SON FOR THE MOST PART IS CHILL

9313
05:09:53,670 --> 05:09:55,439
BUT I KNOW HE WAS UPSET BECAUSE

9314
05:09:55,439 --> 05:09:58,275
HE WOULD COME HOME AND HE WOULD

9315
05:09:58,275 --> 05:10:01,077
SAY, POST HIGH SCHOOL IS

9316
05:10:01,077 --> 05:10:01,711
DIFFERENT.

9317
05:10:01,711 --> 05:10:04,214
HE WILL KNOCK ON THE WALL,

9318
05:10:04,214 --> 05:10:06,283
LITERALLY, IT'S LITERALLY A

9319
05:10:06,283 --> 05:10:07,951
KNOCK, OR HE WILL STOMP ON FOOT.

9320
05:10:07,951 --> 05:10:09,052
AND THAT'S HIS PROTEST.

9321
05:10:09,052 --> 05:10:12,255
LIKE I HAVE RECOGNIZED THERE ARE

9322
05:10:12,255 --> 05:10:13,557
AN ARRAY OF BEHAVIORS ACROSS THE

9323
05:10:13,557 --> 05:10:14,891
SPECTRUM THAT ARE HAPPENING SO

9324
05:10:14,891 --> 05:10:18,395
AGAIN, TRULY BLESSED THAT IT WAS

9325
05:10:18,395 --> 05:10:19,930
NOT WORSE.

9326
05:10:19,930 --> 05:10:21,998
BUT YOU KNOW, WE'RE LOOKING NOW

9327
05:10:21,998 --> 05:10:25,168
AT, OKAY, IS HE BECOMING MORE

9328
05:10:25,168 --> 05:10:27,237
ANXIOUS ABOUT THIS PROGRAM, HE

9329
05:10:27,237 --> 05:10:29,339
JUST STARTED SCHOOL AGAIN ON

9330
05:10:29,339 --> 05:10:30,774
MONDAY, AND HE SEEMS TO BE

9331
05:10:30,774 --> 05:10:33,410
SETTLED IN BECAUSE HE IS A

9332
05:10:33,410 --> 05:10:33,710
ROUTINE GUY.

9333
05:10:33,710 --> 05:10:35,212
HE LIKES HIS ROUTINE.

9334
05:10:35,212 --> 05:10:37,614
AND SO HE HAS TO DRESS FOR

9335
05:10:37,614 --> 05:10:39,983
SUCCESS AND WEAR, YOU KNOW, THE

9336
05:10:39,983 --> 05:10:41,251
CLOTHES THAT HE NEEDS TO WEAR

9337
05:10:41,251 --> 05:10:43,787
AND HE KNOWS WHAT DAY THAT HE IS

9338
05:10:43,787 --> 05:10:45,856
WEARING WHICH OUTFIT TO SCHOOL,

9339
05:10:45,856 --> 05:10:47,424
WHICH IS GREAT, AND WE'VE REALLY

9340
05:10:47,424 --> 05:10:49,493
COME A LONG WAY.

9341
05:10:49,493 --> 05:10:52,662
BUT WE HAD TO BE IN A PLACEMENT

9342
05:10:52,662 --> 05:10:54,998
THAT'S OUTSIDE OF THE SCHOOL

9343
05:10:54,998 --> 05:10:55,832
SYSTEM, AND SO WHEN WE THINK

9344
05:10:55,832 --> 05:10:58,068
ABOUT THE CHALLENGE AND WHAT IS

9345
05:10:58,068 --> 05:11:00,837
NEEDED, WE NEED SCHOOL SYSTEMS

9346
05:11:00,837 --> 05:11:02,706
THAT HAVE STAFF THAT ARE

9347
05:11:02,706 --> 05:11:04,875
APPROPRIATELY TRAINED TO SUPPORT

9348
05:11:04,875 --> 05:11:07,444
THIS WHOLE SPECTRUM.

9349
05:11:07,444 --> 05:11:10,347
I'VE RECOGNIZED THAT

9350
05:11:10,347 --> 05:11:11,348
SOMETIMES -- I DON'T WANT TO SAY

9351
05:11:11,348 --> 05:11:12,449
THERE'S NO CHOICE BUT THE CHOICE

9352
05:11:12,449 --> 05:11:15,285
IS IF I WANT MY CHILD TO THRIVE,

9353
05:11:15,285 --> 05:11:17,254
I NEED TO FIGHT FOR X, Y, Z,

9354
05:11:17,254 --> 05:11:17,721
RIGHT?

9355
05:11:17,721 --> 05:11:19,122
IT ALL INDIVIDUALIZED.

9356
05:11:19,122 --> 05:11:21,458
BUT I THINK ABOUT THE PARENTS

9357
05:11:21,458 --> 05:11:23,760
WHO MIGHT NOT HAVE THE RESOURCES

9358
05:11:23,760 --> 05:11:27,163
TO EVEN ADVOCATE TO GET AN

9359
05:11:27,163 --> 05:11:30,033
ATTORNEY, TO FIGHT, RIGHT, TO

9360
05:11:30,033 --> 05:11:31,368
GET THEIR CHILD AN APPROPRIATE

9361
05:11:31,368 --> 05:11:32,903
PLACEMENT, THAT'S ONE THING.

9362
05:11:32,903 --> 05:11:33,770
ANOTHER THING THAT HAS COME UP

9363
05:11:33,770 --> 05:11:35,338
AND THINKING ABOUT THE WORK THAT

9364
05:11:35,338 --> 05:11:37,073
I'M DOING AND SPEAKING TO

9365
05:11:37,073 --> 05:11:40,010
PARENTS IS HAVING AN AUTISM 101.

9366
05:11:40,010 --> 05:11:42,012
WHAT IS AUTISM?

9367
05:11:42,012 --> 05:11:43,980
HOW DOES THIS LOOK FOR MY CHILD?

9368
05:11:43,980 --> 05:11:45,715
WHAT IS GENERAL INFORMATION

9369
05:11:45,715 --> 05:11:46,850
ABOUT AUTISM THAT FAMILIES CAN

9370
05:11:46,850 --> 05:11:49,920
GET WHEN THEIR CHILD IS FIRST

9371
05:11:49,920 --> 05:11:50,487
DIAGNOSED BECAUSE FAMILIES

9372
05:11:50,487 --> 05:11:51,788
BASICALLY GET THE REPORT, ONCE

9373
05:11:51,788 --> 05:11:53,657
THEY GET IN FOR AN EVALUATION,

9374
05:11:53,657 --> 05:11:56,459
IF IT'S NOT TWO YEARS LIKE -- IT

9375
05:11:56,459 --> 05:11:57,861
WAS EIGHT MONTHS THEN.

9376
05:11:57,861 --> 05:11:59,963
WE'RE TALKING TWO, 2 1/2 YEARS

9377
05:11:59,963 --> 05:12:01,264
NOW, RIGHT?

9378
05:12:01,264 --> 05:12:03,099
AND SO YOU KNOW, AND THIS IS ALL

9379
05:12:03,099 --> 05:12:03,700
ACROSS THE COUNTRY.

9380
05:12:03,700 --> 05:12:06,002
SO PROGRAMS LIKE ECHO WHICH I'VE

9381
05:12:06,002 --> 05:12:08,772
TALKED ABOUT ARE ALL THE MORE

9382
05:12:08,772 --> 05:12:09,406
PARAMOUNT IN MAKING SURE THAT

9383
05:12:09,406 --> 05:12:10,407
COMMUNITY PROVIDERS ARE ABLE TO

9384
05:12:10,407 --> 05:12:12,475
HELP TO MITIGATE THAT AND GET

9385
05:12:12,475 --> 05:12:16,112
THESE KIDS DIAGNOSED.

9386
05:12:16,112 --> 05:12:16,780
BUT ACCESS TO SERVICES,

9387
05:12:16,780 --> 05:12:19,282
RESOURCES WHERE PEOPLE ARE NOT

9388
05:12:19,282 --> 05:12:22,152
GOING BROKE, THAT IS A REAL

9389
05:12:22,152 --> 05:12:23,453
THING.

9390
05:12:23,453 --> 05:12:24,254
ALSO AGAIN GETTING BACK TO THIS

9391
05:12:24,254 --> 05:12:27,324
TRANSITION TO ADULTHOOD, MAKING

9392
05:12:27,324 --> 05:12:29,859
SURE THAT WE ARE NOT FALLING OFF

9393
05:12:29,859 --> 05:12:30,493
A CLIFF, THAT OUR CHILDREN ARE

9394
05:12:30,493 --> 05:12:31,494
NOT FALLING OFF A CLIFF WHEN

9395
05:12:31,494 --> 05:12:32,829
THEY BECOME ADULT.

9396
05:12:32,829 --> 05:12:34,631
AND WE HAVE A CLEAR

9397
05:12:34,631 --> 05:12:35,265
UNDERSTANDING OF WHAT THESE

9398
05:12:35,265 --> 05:12:36,032
SYSTEMS LOOK LIKE.

9399
05:12:36,032 --> 05:12:38,568
SO I'M REALLY EXCITED, JULIE,

9400
05:12:38,568 --> 05:12:41,805
ABOUT WHAT YOU'RE BUILDING, YOU

9401
05:12:41,805 --> 05:12:43,273
KNOW, VANDERBILT, I HAVE DONE A

9402
05:12:43,273 --> 05:12:45,141
PRESENTATION ON TRANSITION TO

9403
05:12:45,141 --> 05:12:47,344
SUPPORT FAMILIES LOCALLY IN D.C.

9404
05:12:47,344 --> 05:12:49,546
, AND TO BE HONEST, PROVIDERS

9405
05:12:49,546 --> 05:12:51,314
WHO LISTEN TO A PRESENTATION

9406
05:12:51,314 --> 05:12:53,083
LIKE, YETTA, I HAVE NOT HEARD

9407
05:12:53,083 --> 05:12:56,152
THIS ROBUST A PRESENTATION.

9408
05:12:56,152 --> 05:13:00,490
AND I USE -- LIFE COURSE, SO

9409
05:13:00,490 --> 05:13:02,092
THAT WAS NOTED.

9410
05:13:02,092 --> 05:13:02,792
SO THERE ARE THINGS OUT HERE IN

9411
05:13:02,792 --> 05:13:03,960
THE LARGER COMMUNITY AND WE'VE

9412
05:13:03,960 --> 05:13:05,362
TALKED ABOUT HOW DO WE CREATE

9413
05:13:05,362 --> 05:13:07,130
SOME REPOSITORY OF INFORMATION

9414
05:13:07,130 --> 05:13:08,264
SO THAT EVERYONE CAN ACCESS, AND

9415
05:13:08,264 --> 05:13:11,001
WE'RE NOT RE-CREATING THE WHEEL.

9416
05:13:11,001 --> 05:13:11,735
RIGHT?

9417
05:13:11,735 --> 05:13:13,103
YOU'VE GOT TO START FROM

9418
05:13:13,103 --> 05:13:13,370
SOMEWHERE.

9419
05:13:13,370 --> 05:13:14,404
EVERYBODY CANNOT BE STARTING

9420
05:13:14,404 --> 05:13:14,938
FROM SCRATCH.

9421
05:13:14,938 --> 05:13:17,807
YES, WE NEED TO MAKE SURE IT'S

9422
05:13:17,807 --> 05:13:19,142
CULTURALLY COMPETENT, AND IT'S

9423
05:13:19,142 --> 05:13:19,843
REFLECTIVE OF THE COMMUNITY THAT

9424
05:13:19,843 --> 05:13:20,577
WE'RE SERVING.

9425
05:13:20,577 --> 05:13:23,279
BUT WE STILL CANNOT BE STARTING

9426
05:13:23,279 --> 05:13:24,948
OVER AND OVER AGAIN.

9427
05:13:24,948 --> 05:13:26,716
AND WOVE GOT TO FIX THIS,

9428
05:13:26,716 --> 05:13:27,817
BECAUSE PEOPLE ARE FALLING

9429
05:13:27,817 --> 05:13:35,625
THROUGH THE CRACKS.

9430
05:13:35,625 --> 05:13:37,694
>> THANK YOU.

9431
05:13:37,694 --> 05:13:37,894
NANCY?

9432
05:13:37,894 --> 05:13:38,695
>> SO I'VE HEARD THE WORE

9433
05:13:38,695 --> 05:13:39,996
FALLING OFF THE CLIFF USED A LOT

9434
05:13:39,996 --> 05:13:42,866
IN TERMS OF GRADUATING FROM HIGH

9435
05:13:42,866 --> 05:13:43,867
SCHOOL AND INTO ADULTHOOD, AND

9436
05:13:43,867 --> 05:13:48,238
THEN THERE'S ANOTHER CLIFF, AND

9437
05:13:48,238 --> 05:13:49,472
THAT'S WHEN THE PARENTS AGE AND

9438
05:13:49,472 --> 05:13:54,177
HAVE TO DECIDE WHAT'S NEXT, AND

9439
05:13:54,177 --> 05:13:56,479
WHO, AND WHERE.

9440
05:13:56,479 --> 05:13:58,114
VONTRIL, I'M IN THE 70-YEAR-OLD

9441
05:13:58,114 --> 05:13:59,449
CLUB WITH YOU.

9442
05:13:59,449 --> 05:14:00,750
OKAY?

9443
05:14:00,750 --> 05:14:02,619
SO AS THAT HAPPENS, I MEAN, WE

9444
05:14:02,619 --> 05:14:06,289
LOVE DAN LIVING WITH US, BUT WE

9445
05:14:06,289 --> 05:14:07,490
REALIZE -- WE'RE REALIZING NOW,

9446
05:14:07,490 --> 05:14:09,125
WE'VE GOT TO GET SOME ADVANCED

9447
05:14:09,125 --> 05:14:10,860
PLANS, WE'VE GOT TO GET SOME

9448
05:14:10,860 --> 05:14:12,262
THINGS IN PLACE, AND TRULY, IT

9449
05:14:12,262 --> 05:14:13,096
IS LIKE A CLIFF.

9450
05:14:13,096 --> 05:14:16,399
I LOOK OVER THE EDGE AND GO,

9451
05:14:16,399 --> 05:14:16,766
OOO, NOT TODAY.

9452
05:14:16,766 --> 05:14:17,167
AND I BACK UP.

9453
05:14:17,167 --> 05:14:19,135
THEN I BACK UP.

9454
05:14:19,135 --> 05:14:22,739
SO THAT KIND OF GUIDANCE WOULD

9455
05:14:22,739 --> 05:14:25,041
BE IMMENSELY HELPFUL IN TERMS OF

9456
05:14:25,041 --> 05:14:28,378
A VERY SPECIFIC AND INTENTIONAL

9457
05:14:28,378 --> 05:14:34,050
RESOURCE AND SUPPORT.

9458
05:14:34,050 --> 05:14:37,954
I CANNOT EMPHASIZE ENOUGH IT WAS

9459
05:14:37,954 --> 05:14:39,789
OTHER FAMILIES WHO WERE OUR

9460
05:14:39,789 --> 05:14:40,890
TEACHERS, OUR VERY BEST

9461
05:14:40,890 --> 05:14:41,224
TEACHERS.

9462
05:14:41,224 --> 05:14:42,759
SO AS MANY OPPORTUNITIES AS

9463
05:14:42,759 --> 05:14:44,227
THERE CAN BE FOR FAMILIES TO

9464
05:14:44,227 --> 05:14:46,596
CONNECT WITH EACH OTHER -- I

9465
05:14:46,596 --> 05:14:48,565
HAVE YOUNG PARENTS CONTACTING ME

9466
05:14:48,565 --> 05:14:49,632
SAYING, HELP, YOU KNOW, WHAT DO

9467
05:14:49,632 --> 05:14:52,902
WE DO, AND IT'S VERY GRATIFYING

9468
05:14:52,902 --> 05:14:56,439
TO WALK THROUGH, YOU KNOW, OKAY,

9469
05:14:56,439 --> 05:14:57,540
HERE'S WHAT -- HERE'S WHERE YOU

9470
05:14:57,540 --> 05:14:58,641
ARE AND WHAT YOU NEED TO BE

9471
05:14:58,641 --> 05:15:00,243
THINKING ABOUT NOW, BUT YOU'VE

9472
05:15:00,243 --> 05:15:01,377
GOT THIS.

9473
05:15:01,377 --> 05:15:02,512
YOU'RE THE EXPERT ON YOUR OWN

9474
05:15:02,512 --> 05:15:03,179
CHILD.

9475
05:15:03,179 --> 05:15:04,714
YOU'RE STILL THE EXPERT.

9476
05:15:04,714 --> 05:15:05,148
 ON THIS

9477
05:15:05,148 --> 05:15:07,517
LITTLE GUY.

9478
05:15:07,517 --> 05:15:08,151
THE OTHER THING I WAS THINKING

9479
05:15:08,151 --> 05:15:10,253
ABOUT IN TERMS OF SERVICES AND

9480
05:15:10,253 --> 05:15:12,122
SUPPORTS THAT ARE MISSING OR

9481
05:15:12,122 --> 05:15:15,625
THAT COULD BE HELPFUL FOR

9482
05:15:15,625 --> 05:15:16,659
CAREGIVERS, I DIDN'T MENTION

9483
05:15:16,659 --> 05:15:18,595
THIS BEFORE BUT I WAS ALSO THE

9484
05:15:18,595 --> 05:15:21,865
PRIMARY CAREGIVER FOR MY PARENTS

9485
05:15:21,865 --> 05:15:23,900
AND MY HUSBAND'S MOTHER WHO

9486
05:15:23,900 --> 05:15:26,069
LIVED WITH US FOR 13 YEARS.

9487
05:15:26,069 --> 05:15:29,773
SO THAT KIND OF

9488
05:15:29,773 --> 05:15:31,207
MULTIGENERATIONAL SITUATION AS

9489
05:15:31,207 --> 05:15:33,576
MY MOTHER-IN-LAW IN PARTICULAR'S

9490
05:15:33,576 --> 05:15:37,380
HEALTH FAILED, SOME KIND OF A

9491
05:15:37,380 --> 05:15:38,481
BRIDGE SUPPORT, YOU KNOW, WHERE

9492
05:15:38,481 --> 05:15:42,018
THEY COULD HAVE BOTH HAD SUPPORT

9493
05:15:42,018 --> 05:15:42,652
AT THE SAME TIME, FOR EXAMPLE.

9494
05:15:42,652 --> 05:15:44,521
YOU KNOW, SO SOMETHING ALONG

9495
05:15:44,521 --> 05:15:47,357
THOSE LINES, BUT WHEN YOU'RE

9496
05:15:47,357 --> 05:15:49,959
JUGGLING MULTIPLE CARE GIVING

9497
05:15:49,959 --> 05:15:51,895
ROLES LIKE THAT, THAT'S A TIME

9498
05:15:51,895 --> 05:15:54,964
WHEN EXTRA SUPPORT WOULD BE MOST

9499
05:15:54,964 --> 05:15:58,034
HELPFUL.

9500
05:15:58,034 --> 05:15:59,536
>> AND JOE?

9501
05:15:59,536 --> 05:16:05,408
>> THANK YOU.

9502
05:16:05,408 --> 05:16:06,075
I THINK THE CHALLENGES THAT

9503
05:16:06,075 --> 05:16:09,245
FAMILY CAREGIVERS FACE AND THE

9504
05:16:09,245 --> 05:16:10,647
SUPPORT AND RESOURCES ARE VERY

9505
05:16:10,647 --> 05:16:13,883
MUCH INTERTWINED.

9506
05:16:13,883 --> 05:16:17,587
AS WAS SAID EARLIER, MANY FAMILY

9507
05:16:17,587 --> 05:16:20,323
CAREGIVERS ARE ALSO SINGLE

9508
05:16:20,323 --> 05:16:24,093
PARENTS, AND AS NANCY SAID, IT'S

9509
05:16:24,093 --> 05:16:25,061
JUST MIND BOGGLING TO THINK HOW

9510
05:16:25,061 --> 05:16:27,163
SOMEONE COULD HANDLE THAT AS A

9511
05:16:27,163 --> 05:16:28,364
SINGLE PARENT.

9512
05:16:28,364 --> 05:16:32,001
BUT EVEN FOR COUPLES, MOST

9513
05:16:32,001 --> 05:16:34,871
COUPLES THAT ARE ACTING IN THE

9514
05:16:34,871 --> 05:16:38,341
FORM OF FAMILY CAREGIVERS, IT'S

9515
05:16:38,341 --> 05:16:41,477
A ONE-INCOME FAMILY.

9516
05:16:41,477 --> 05:16:42,378
YOU KNOW, AND THAT'S WHAT WE

9517
05:16:42,378 --> 05:16:46,516
FACED IN OUR HOUSEHOLD.

9518
05:16:46,516 --> 05:16:49,385
ELISE LITERALLY GAVE UP HER

9519
05:16:49,385 --> 05:16:51,888
CAREER IN THE ART WORLD TO STAY

9520
05:16:51,888 --> 05:16:53,590
HOME AND FOCUS ON THE FAMILY.

9521
05:16:53,590 --> 05:16:57,193
SO I BECAME THE SOLE WAGE EARNER

9522
05:16:57,193 --> 05:16:59,195
FOR THE FAMILY.

9523
05:16:59,195 --> 05:17:03,933
SO THAT PUT STRESS ON ALL OF US.

9524
05:17:03,933 --> 05:17:09,305
I FELT LIKE I HAD TO DELIVER.

9525
05:17:09,305 --> 05:17:11,507
WHICH MEANT I HAD TO WORK EVEN

9526
05:17:11,507 --> 05:17:13,142
HARDER AND TRAVEL EVEN MORE AND

9527
05:17:13,142 --> 05:17:15,011
WHEN I WAS OUT ON THE ROAD, I

9528
05:17:15,011 --> 05:17:17,413
WAS ALWAYS WORRIED ABOUT WHAT IS

9529
05:17:17,413 --> 05:17:23,253
TAKING PLACE AT HOME.

9530
05:17:23,253 --> 05:17:24,687
OFTEN WHEN I WOULD COME HOME, I

9531
05:17:24,687 --> 05:17:27,957
WOULD SEE THAT ELISE MAY BE

9532
05:17:27,957 --> 05:17:31,394
BRUISED FROM BASICALLY TRYING TO

9533
05:17:31,394 --> 05:17:33,563
INTERVENE AND KEEP DAVID FROM

9534
05:17:33,563 --> 05:17:34,964
HITTING HIMSELF, DAVID WAS

9535
05:17:34,964 --> 05:17:37,967
REALLY NOT AGGRESSIVE TOWARDS

9536
05:17:37,967 --> 05:17:40,603
OTHERS, BUT WHEN YOU GET IN

9537
05:17:40,603 --> 05:17:42,472
BETWEEN TO TRY TO KEEP HIM SAFE,

9538
05:17:42,472 --> 05:17:46,609
OFTEN YOU'RE THE RECIPIENT OF

9539
05:17:46,609 --> 05:17:48,845
THE BEHAVIORS.

9540
05:17:48,845 --> 05:17:53,249
SO THERE'S A LOT OF STRESS ON

9541
05:17:53,249 --> 05:17:59,923
FAMILIES TO BE ABLE TO PROVIDE.

9542
05:17:59,923 --> 05:18:04,794
ALSO ELISE ALWAYS --

9543
05:18:04,794 --> 05:18:15,004
[AUDIO LOST]

9544
05:18:28,451 --> 05:18:30,253
THAT WORK, BUT THEY HAVE LIMITED

9545
05:18:30,253 --> 05:18:32,121
HOURS.

9546
05:18:32,121 --> 05:18:34,524
AND ONE OF THE ISSUES WE FACED

9547
05:18:34,524 --> 05:18:36,025
WAS THAT WE COULD NOT LEAVE

9548
05:18:36,025 --> 05:18:38,761
DAVID ALONE OVERNIGHT WHILE HE

9549
05:18:38,761 --> 05:18:41,130
WAS SLEEPING.

9550
05:18:41,130 --> 05:18:42,899
BECAUSE HE WOULD JUST WAKE UP

9551
05:18:42,899 --> 05:18:44,701
OUT OF THE BLUE IN THE MIDDLE OF

9552
05:18:44,701 --> 05:18:46,669
THE NIGHT AND START HAVING SELF

9553
05:18:46,669 --> 05:18:48,004
INJURIOUS BEHAVIORS, AND IF WE

9554
05:18:48,004 --> 05:18:50,673
WEREN'T RIGHT THERE TO

9555
05:18:50,673 --> 05:18:51,307
INTERVENE, THE ROOM COULD LOOK

9556
05:18:51,307 --> 05:18:54,610
LIKE A WAR ZONE -- WAR SCENE

9557
05:18:54,610 --> 05:18:59,315
WITH BLOOD AND SO ON.

9558
05:18:59,315 --> 05:19:05,154
SO THE SUPPORTS THAT ARE NEEDED

9559
05:19:05,154 --> 05:19:09,625
FOR BEHAVIORAL AND TN SUPPORT

9560
05:19:09,625 --> 05:19:13,262
STAFF JUST NEED TO BE

9561
05:19:13,262 --> 05:19:15,565
CONTINUALLY LOOKED AT AND

9562
05:19:15,565 --> 05:19:15,832
IMPROVED.

9563
05:19:15,832 --> 05:19:19,769
ANOTHER RESOURCE THAT IS VITAL

9564
05:19:19,769 --> 05:19:20,636
IS TRANSPORTATION.

9565
05:19:20,636 --> 05:19:23,673
ESPECIALLY WITH A FAMILY LIKE

9566
05:19:23,673 --> 05:19:25,975
OURS WHERE MY WIFE WAS CARING

9567
05:19:25,975 --> 05:19:28,277
FOR ONE SON WITH DOWN SYNDROME,

9568
05:19:28,277 --> 05:19:32,382
ONE SON WITH AUTISM, AND THE

9569
05:19:32,382 --> 05:19:34,417
THERAPEUTIC SUPPORT STAFF ARE

9570
05:19:34,417 --> 05:19:36,953
NOT PERMITTED TO DRIVE THEIR

9571
05:19:36,953 --> 05:19:40,223
CLIENTS, SO MY WIFE WAS THE

9572
05:19:40,223 --> 05:19:40,556
CHAUFFEUR.

9573
05:19:40,556 --> 05:19:44,627
AND YOU KNOW, OFTEN THE TWO BOYS

9574
05:19:44,627 --> 05:19:45,795
ARE VERY DIFFERENT.

9575
05:19:45,795 --> 05:19:48,164
ONE WANTED TO BE IN THE LIBRARY,

9576
05:19:48,164 --> 05:19:50,233
AND ONE WANTED TO BE AT THE

9577
05:19:50,233 --> 05:19:52,101
PARK.

9578
05:19:52,101 --> 05:19:54,470
AND HOW DO YOU ACCOMMODATE BOTH?

9579
05:19:54,470 --> 05:19:59,442
SO THERE'S A REAL NEED OUT THERE

9580
05:19:59,442 --> 05:20:02,078
FOR TRANSPORTATION SERVICES FOR

9581
05:20:02,078 --> 05:20:07,216
THOSE WITH AUTISM AND OTHER

9582
05:20:07,216 --> 05:20:09,886
DISABILITIES.

9583
05:20:09,886 --> 05:20:13,289
FAINLLFINALLY OTHER RESOURCES TE

9584
05:20:13,289 --> 05:20:15,191
NEEDED, ACCESS TO SERVICES.

9585
05:20:15,191 --> 05:20:17,627
THERE'S A VERY SEVERE SHORE STAJ

9586
05:20:17,627 --> 05:20:19,595
AS YOU ALL KNOW OF QUALIFIED

9587
05:20:19,595 --> 05:20:20,963
PROFESSIONALS WHO REALLY

9588
05:20:20,963 --> 05:20:21,831
UNDERSTAND THE UNIQUE NEEDS OF

9589
05:20:21,831 --> 05:20:24,901
THOSE WITH PROFOUND AUTISM AND

9590
05:20:24,901 --> 05:20:28,071
ALL AUTISTIC INDIVIDUALS.

9591
05:20:28,071 --> 05:20:30,373
SO ACCESS TO THE SERVICE -- TO

9592
05:20:30,373 --> 05:20:32,508
THE QUALIFIED PROFESSIONALS IS

9593
05:20:32,508 --> 05:20:33,709
EXTREMELY LIMITED.

9594
05:20:33,709 --> 05:20:37,580
MY WIFE REALLY WORKED AS AN

9595
05:20:37,580 --> 05:20:40,850
UNPAID CARE PROFESSIONAL BECAUSE

9596
05:20:40,850 --> 05:20:43,152
SO OFTEN THERE WAS NOT THE

9597
05:20:43,152 --> 05:20:45,888
AGENCY THAT PROVIDED OUR TSS

9598
05:20:45,888 --> 05:20:49,025
SERVICE WAS UNDERSTAFFED AND

9599
05:20:49,025 --> 05:20:52,995
THEY WOULD RELY ON US AS PARENTS

9600
05:20:52,995 --> 05:20:55,364
TO PROVIDE THE SERVICES.

9601
05:20:55,364 --> 05:21:02,105
SO -- AND FINALLY, RESPITE CARE.

9602
05:21:02,105 --> 05:21:03,406
FAMILY CAREGIVERS NEED A BREAK.

9603
05:21:03,406 --> 05:21:08,444
THEY NEED THE OPPORTUNITY TO GET

9604
05:21:08,444 --> 05:21:10,780
AWAY FOR A DAY OR TWO AND TO

9605
05:21:10,780 --> 05:21:16,352
AVOID BURNOUT, AND THE RESPITE

9606
05:21:16,352 --> 05:21:17,353
SERVICES, EVEN IF THEY ARE

9607
05:21:17,353 --> 05:21:19,922
AVAILABLE, ARE VERY LIMITED.

9608
05:21:19,922 --> 05:21:20,490
THERE'S LIMITS ON HOW MANY

9609
05:21:20,490 --> 05:21:22,125
NIGHTS PER YEAR YOU CAN USE SO

9610
05:21:22,125 --> 05:21:26,462
YOU REALLY HAVE TO PLAP IT WELLL

9611
05:21:26,462 --> 05:21:27,864
IN ADVANCE SO I THINK RESPITE

9612
05:21:27,864 --> 05:21:29,065
SERVICES IS ANOTHER RESOURCE AND

9613
05:21:29,065 --> 05:21:32,635
AREA OF SUPPORT THAT IS SORLIE

9614
05:21:32,635 --> 05:21:33,636
NEEDED.

9615
05:21:33,636 --> 05:21:33,970
>> THANK YOU.

9616
05:21:33,970 --> 05:21:40,209
AND VONTRIL.

9617
05:21:40,209 --> 05:21:42,678
>> OKAY, WHERE DO I START?

9618
05:21:42,678 --> 05:21:46,282
ALL RIGHTY.

9619
05:21:46,282 --> 05:21:46,949
THE CHALLENGES.

9620
05:21:46,949 --> 05:21:49,552
I HEARD ONE OF THE SPEAKERS

9621
05:21:49,552 --> 05:21:51,053
EARLIER SPEAK OF BOUTIQUE

9622
05:21:51,053 --> 05:21:52,021
SHOPPING.

9623
05:21:52,021 --> 05:21:53,122
THAT'S WHAT I FELT LIKE WHEN

9624
05:21:53,122 --> 05:21:56,492
TREY MOVED IN WITH US.

9625
05:21:56,492 --> 05:21:57,927
THERE WAS A LITTLE BIT OF THIS,

9626
05:21:57,927 --> 05:22:00,596
LITTLE BIT OF THAT, THERE WAS NO

9627
05:22:00,596 --> 05:22:01,264
COMPREHENSIVE DATABASE OR

9628
05:22:01,264 --> 05:22:03,332
GATHERING OF INFORMATION THAT

9629
05:22:03,332 --> 05:22:05,401
WOULD SHOW ME WHAT I NEEDED.

9630
05:22:05,401 --> 05:22:09,272
SO WE HAD NO TEMPLATE AND EVEN

9631
05:22:09,272 --> 05:22:10,706
THOUGH TREY HAD BEEN IN OUR

9632
05:22:10,706 --> 05:22:13,009
LIVES AS A CHILD GROWING UP,

9633
05:22:13,009 --> 05:22:14,277
IT'S TOTALLY DIFFERENT.

9634
05:22:14,277 --> 05:22:15,878
THE SUPPORTS HE NEEDS AND THE

9635
05:22:15,878 --> 05:22:18,414
SUPPORTS THAT WE NEEDED WERE

9636
05:22:18,414 --> 05:22:19,382
DRASTICALLY CHANGED.

9637
05:22:19,382 --> 05:22:21,517
FOR INSTANCE, THE CHALLENGES OF

9638
05:22:21,517 --> 05:22:21,884
HEALTHCARE NOW.

9639
05:22:21,884 --> 05:22:23,586
WE NEEDED TO FIND A DOCTOR AND

9640
05:22:23,586 --> 05:22:27,089
WHEN HE MOVED IN, HE WAS ON ONE

9641
05:22:27,089 --> 05:22:28,891
KIND OF MEDICAID PLAN AND THEN

9642
05:22:28,891 --> 05:22:30,893
WHEN HE BECAME 20, THEN WE HAD

9643
05:22:30,893 --> 05:22:34,597
TO TRANSITION.

9644
05:22:34,597 --> 05:22:36,632
SO WE HAD TO FIND A DENTIST, WE

9645
05:22:36,632 --> 05:22:38,167
WERE RESPONSIBLE FOR EMOTIONAL

9646
05:22:38,167 --> 05:22:40,136
SUPPORT FOR HIM FOR COUNSELING

9647
05:22:40,136 --> 05:22:41,804
BECAUSE IF YOU THINK ABOUT IT,

9648
05:22:41,804 --> 05:22:44,640
HAVING LIVED WITH YOUR PARENTS

9649
05:22:44,640 --> 05:22:46,075
AND YOUR SIBLINGS, ALL OF YOUR

9650
05:22:46,075 --> 05:22:48,844
LIFE UNTIL YOU WERE 18 1/2 YEARS

9651
05:22:48,844 --> 05:22:51,047
OLD HAS GOT TO BE TRAUMATIC AND

9652
05:22:51,047 --> 05:22:52,048
DEVASTATING TO MAKE THAT

9653
05:22:52,048 --> 05:22:53,249
TRANSITION.

9654
05:22:53,249 --> 05:22:55,284
EVEN THOUGH HE DECIDED THAT HE

9655
05:22:55,284 --> 05:22:56,686
WANTED TO LIVE HERE WITH US, IT

9656
05:22:56,686 --> 05:23:01,090
HAD TO LEAFY MOTI LEAVE EMOTIONO

9657
05:23:01,090 --> 05:23:03,960
WE HAD TO FIND THE COUNSELING.

9658
05:23:03,960 --> 05:23:06,062
WE HAD TO BE HIS RECREATIONAL

9659
05:23:06,062 --> 05:23:06,295
SUPPORT.

9660
05:23:06,295 --> 05:23:08,030
AS YETTA WAS SAYING ABOUT HER

9661
05:23:08,030 --> 05:23:10,666
SON AND ALL OF THE SKILLS AND

9662
05:23:10,666 --> 05:23:12,802
YOU KNOW, IDEAS THAT HE HAS THAT

9663
05:23:12,802 --> 05:23:16,305
HE WANTS TO GET INVOLVED IN, HO

9664
05:23:16,305 --> 05:23:17,840
HOBBIES, WELL, TREY IS THE SAME

9665
05:23:17,840 --> 05:23:19,242
WAY.

9666
05:23:19,242 --> 05:23:22,278
LUCKILY, IN 2019, I CONNECTED

9667
05:23:22,278 --> 05:23:24,480
WITH SPECIAL OLYMPICS, AND THEY

9668
05:23:24,480 --> 05:23:26,782
HAVE PROGRAMS THAT ARE ALMOST

9669
05:23:26,782 --> 05:23:27,116
FREE.

9670
05:23:27,116 --> 05:23:29,952
I THINK WE PAY ABOUT $12 A YEAR,

9671
05:23:29,952 --> 05:23:34,390
AND THEY ONLY REQUIRE YOU TO

9672
05:23:34,390 --> 05:23:35,157
RENEW THE PHYSICAL EVERY TWO

9673
05:23:35,157 --> 05:23:36,692
YEARS.

9674
05:23:36,692 --> 05:23:42,698
SO HE SWIMS, HE BOWLS, HE TOOK

9675
05:23:42,698 --> 05:23:43,132
BOXING.

9676
05:23:43,132 --> 05:23:46,269
ALL OF THOSE THINGS WERE ON US

9677
05:23:46,269 --> 05:23:48,337
BECAUSE AS HUMAN BEINGS, WE ARE

9678
05:23:48,337 --> 05:23:49,672
EMOTIONAL BEINGS, WE ARE

9679
05:23:49,672 --> 05:23:51,707
PHYSICAL BEINGS AND WE ARE

9680
05:23:51,707 --> 05:23:53,042
SPIRITUAL BEINGS.

9681
05:23:53,042 --> 05:23:54,577
THE FINANCIAL RESOURCES, WHERE

9682
05:23:54,577 --> 05:23:56,445
ARE WE GOING TO GET THESE

9683
05:23:56,445 --> 05:23:58,214
RESOURCES TO COVER THESE THINGS,

9684
05:23:58,214 --> 05:23:59,849
YOU KNOW, DID HE HAVE THIS

9685
05:23:59,849 --> 05:24:01,050
BENEFIT WHEN HE WAS WITH HIS

9686
05:24:01,050 --> 05:24:01,384
PARENTS?

9687
05:24:01,384 --> 05:24:03,753
HOW DOES THAT TRANSFER TO US,

9688
05:24:03,753 --> 05:24:05,254
DOES THAT TRANSFER TO US?

9689
05:24:05,254 --> 05:24:07,323
SO HOW DO WE FILL IN THOSE

9690
05:24:07,323 --> 05:24:08,224
HOLES?

9691
05:24:08,224 --> 05:24:10,693
SO THAT HE WON'T MISS ANY

9692
05:24:10,693 --> 05:24:16,599
BENEFITS THAT HE SHOULD HAVE.

9693
05:24:16,599 --> 05:24:18,134
MORE COLLABORATIONS, I THINK,

9694
05:24:18,134 --> 05:24:19,802
ARE INTEGRAL AND CRITICAL.

9695
05:24:19,802 --> 05:24:21,237
ON STATE LEVEL, THE COMMUNITY

9696
05:24:21,237 --> 05:24:24,206
LEVEL, THE FEDERAL LEVEL, AND

9697
05:24:24,206 --> 05:24:26,375
THE NON-PROFIT LEVEL.

9698
05:24:26,375 --> 05:24:30,680
I WISH, AGAIN, THAT THERE WERE

9699
05:24:30,680 --> 05:24:32,014
MORE DATABASES, BANKS,

9700
05:24:32,014 --> 05:24:34,183
INFORMATION SYSTEMS THAT WERE

9701
05:24:34,183 --> 05:24:36,819
INTERSECTIONAL TO ONE ANOTHER SO

9702
05:24:36,819 --> 05:24:39,221
THAT WE WOULDN'T ALWAYS BE

9703
05:24:39,221 --> 05:24:41,190
OPERATING FROM A DEFICIT, HAVING

9704
05:24:41,190 --> 05:24:44,460
TO REINVENT THE WHEEL, WHEN WE

9705
05:24:44,460 --> 05:24:46,095
REALLY DIDN'T HAVE TO REINVENT

9706
05:24:46,095 --> 05:24:47,296
THE WHEEL, WE JUST WEREN'T AWARE

9707
05:24:47,296 --> 05:24:49,165
THE WHEEL WAS ALREADY THERE.

9708
05:24:49,165 --> 05:24:52,735
AND ANOTHER THING THAT'S VERY

9709
05:24:52,735 --> 05:24:53,836
CONCERNING TO ME AND WHEN I

9710
05:24:53,836 --> 05:24:57,807
HEARD THIS YEARS AGO, I JUST

9711
05:24:57,807 --> 05:24:59,809
ALMOST BLEW A GASKET, THAT BY

9712
05:24:59,809 --> 05:25:05,915
THIRD GRADE, PENAL INSTITUTIONS,

9713
05:25:05,915 --> 05:25:07,216
CARCERAL INSTITUTIONS ARE

9714
05:25:07,216 --> 05:25:08,017
DECIDING HOW MANY PRISON CELLS

9715
05:25:08,017 --> 05:25:09,885
THEY NEED TO CONSTRUCT FOR OUR

9716
05:25:09,885 --> 05:25:12,188
YOUNG PEOPLE.

9717
05:25:12,188 --> 05:25:14,056
THIRD GRADE.

9718
05:25:14,056 --> 05:25:16,292
AND THEY CONTEMPLATE THAT ON

9719
05:25:16,292 --> 05:25:19,795
READING SCORES OR LACK THERE.

9720
05:25:19,795 --> 05:25:24,467
SO WHERE ARE OUR ADVOCATES IN

9721
05:25:24,467 --> 05:25:25,434
SCHOOL, ADVOCATING FOR THESE

9722
05:25:25,434 --> 05:25:27,970
KIDS, GETTING THESE KIDS

9723
05:25:27,970 --> 05:25:30,473
DIAGNOSED OR SOME WHO ARE

9724
05:25:30,473 --> 05:25:40,516
MISDIAGNOSED AS BEING ENCOVE --D

9725
05:25:40,516 --> 05:25:42,685
THEY MAY VERY WELL HAVE LEARNING

9726
05:25:42,685 --> 05:25:43,619
DIFFERENCES AND LEARNING

9727
05:25:43,619 --> 05:25:44,387
DISABILITIES.

9728
05:25:44,387 --> 05:25:47,423
SO I WOULD LAKE TO SEE MORE

9729
05:25:47,423 --> 05:25:48,891
ENGAGEMENT WITH OUR PUBLIC

9730
05:25:48,891 --> 05:25:52,828
SCHOOL SYSTEMS THE SAME WAY THE

9731
05:25:52,828 --> 05:25:55,865
PENAL AND CARCERAL SYSTEMS ARE

9732
05:25:55,865 --> 05:25:57,066
ENGAGED WITH THE SCHOOL SYSTEM.

9733
05:25:57,066 --> 05:25:58,901
PERHAPS IF WE WORKED TOGETHER

9734
05:25:58,901 --> 05:26:02,505
HAND IN HAND, WE COULD THWART

9735
05:26:02,505 --> 05:26:04,907
AND MAYBE DIMINISH THE NEED FOR

9736
05:26:04,907 --> 05:26:07,309
SO MANY PRISON CELLS WHEN MANY

9737
05:26:07,309 --> 05:26:09,578
OF THE OCCUPANTS OF THE PRISON

9738
05:26:09,578 --> 05:26:12,848
CELLS ARE DISPROPORTIONATELY

9739
05:26:12,848 --> 05:26:13,516
MARGINALIZED BROWN AND BLACK

9740
05:26:13,516 --> 05:26:15,651
PEOPLE WHO DID NOT HAVE THE

9741
05:26:15,651 --> 05:26:16,218
ADVANTAGES THAT SOME OF THE

9742
05:26:16,218 --> 05:26:17,953
OTHER CULTURES HAD.

9743
05:26:17,953 --> 05:26:20,256
SO THAT'S ALWAYS ONE THAT JUST

9744
05:26:20,256 --> 05:26:21,690
MAKES ME CRAZY.

9745
05:26:21,690 --> 05:26:23,492
NOW, ON THE POSITIVE SIDE, THE

9746
05:26:23,492 --> 05:26:26,896
RESOURCES THAT WE WERE ABLE TO

9747
05:26:26,896 --> 05:26:29,498
ACCESS, I GOT THE BOOK HERE.

9748
05:26:29,498 --> 05:26:31,200
MISS YETTA, HERE IS YOUR BOOK.

9749
05:26:31,200 --> 05:26:33,169
CAN YOU ALL SEE THAT?

9750
05:26:33,169 --> 05:26:36,672
I CAME IN TO KNOWLEDGE OF THIS

9751
05:26:36,672 --> 05:26:41,110
PHENOMENAL WOMAN AND HER TEAM,

9752
05:26:41,110 --> 05:26:42,878
COMMUNITY AUTISM RESEARCH

9753
05:26:42,878 --> 05:26:45,714
AMBASSADOR PROGRAM.

9754
05:26:45,714 --> 05:26:46,048
FAMILY VOICE.

9755
05:26:46,048 --> 05:26:49,819
>> THANKS FOR THE SHOUT
OUT,

9756
05:26:49,819 --> 05:26:50,386
VONTRIL.

9757
05:26:50,386 --> 05:26:51,654
DR. LISA WARE AS WELL.

9758
05:26:51,654 --> 05:26:55,157
>> YES, YES, THE WHOLE
TEAM.

9759
05:26:55,157 --> 05:26:57,126
DR. LISA WARE AND THE OTHERS.

9760
05:26:57,126 --> 05:26:58,861
THAT WAS ONE OF MY MAIN

9761
05:26:58,861 --> 05:26:59,195
RESOURCES.

9762
05:26:59,195 --> 05:27:03,432
I HAVE SO MUCH INFORMATION IN

9763
05:27:03,432 --> 05:27:04,366
THIS BOOK.

9764
05:27:04,366 --> 05:27:05,501
I REFERRED TO IT TODAY WHEN

9765
05:27:05,501 --> 05:27:07,803
MAKING MY PRESENTATION.

9766
05:27:07,803 --> 05:27:10,439
AND I FOUND OUT ABOUT FAMILY

9767
05:27:10,439 --> 05:27:12,274
VOICES AND YETTA'S ORGANIZATION

9768
05:27:12,274 --> 05:27:15,544
THROUGH A TEXAS NON-PROFIT

9769
05:27:15,544 --> 05:27:19,915
CALLED TEXAS PARENT TO PARENT.

9770
05:27:19,915 --> 05:27:23,486
THEY WERE ABLE TO GIVE ME

9771
05:27:23,486 --> 05:27:26,121
DOCUMENTS, LEGAL DOCUMENTS, ABLE

9772
05:27:26,121 --> 05:27:31,794
TO ADVISE ME ON THE BEST AVENUES

9773
05:27:31,794 --> 05:27:35,364
TO GO IN ORDER TO TAKE CARE OF

9774
05:27:35,364 --> 05:27:38,234
MY GRANDSON'S SPECIAL CONDITION.

9775
05:27:38,234 --> 05:27:40,202
I WAS SPEAKING TO A FRIEND LAST

9776
05:27:40,202 --> 05:27:43,105
NIGHT ON THE PHONE, SHE HAS A

9777
05:27:43,105 --> 05:27:44,573
GRANDDAUGHTER.

9778
05:27:44,573 --> 05:27:46,709
AND THEY HAVE GUARDIANSHIP, THE

9779
05:27:46,709 --> 05:27:48,511
STATE OF TEXAS, THEY WERE

9780
05:27:48,511 --> 05:27:50,579
ADVISED THAT THEY NEEDED TO

9781
05:27:50,579 --> 05:27:51,847
COMPLETE GUARDIANSHIP PAPERS.

9782
05:27:51,847 --> 05:27:53,382
AND THEN AFTER THEY COMPLETED

9783
05:27:53,382 --> 05:27:55,017
THE GUARDIANSHIP PAPERS, SHE

9784
05:27:55,017 --> 05:27:56,852
SAID WELL THEN THEY HAD TO ADOPT

9785
05:27:56,852 --> 05:27:57,386
THE GRANDDAUGHTER.

9786
05:27:57,386 --> 05:27:59,989
AND I THOUGHT, OH, MY GOODNESS,

9787
05:27:59,989 --> 05:28:02,324
I DON'T KNOW ANYTHING ABOUT

9788
05:28:02,324 --> 05:28:02,591
THIS.

9789
05:28:02,591 --> 05:28:04,994
BUT WITH THE HELP OF TEXAS

9790
05:28:04,994 --> 05:28:10,132
PARENT TO PARENT, WE WERE ABLE

9791
05:28:10,132 --> 05:28:15,604
TO DO THE CORRECT LEGAL

9792
05:28:15,604 --> 05:28:17,106
INFORMATION AND FORMS THAT WE

9793
05:28:17,106 --> 05:28:19,909
NEEDED SO AS NOT TO DO SOMETHING

9794
05:28:19,909 --> 05:28:26,382
THAT WOULD FURTHER INCAPACITATE

9795
05:28:26,382 --> 05:28:31,353
OR FURTHER DEMEAN OR DELAY HIS

9796
05:28:31,353 --> 05:28:32,221
PROGRESSION.

9797
05:28:32,221 --> 05:28:33,756
ANOTHER AGENCY WAS THE TEXAS

9798
05:28:33,756 --> 05:28:34,423
WORKFORCE COMMISSION.

9799
05:28:34,423 --> 05:28:36,125
I'VE ALREADY TOLD YOU ABOUT

9800
05:28:36,125 --> 05:28:36,825
THEM.

9801
05:28:36,825 --> 05:28:40,429
THEY WERE AN INVALUABLE ASSET.

9802
05:28:40,429 --> 05:28:41,864
QUEST EMPLOYMENT, DALLAS, TEXAS,

9803
05:28:41,864 --> 05:28:42,698
THAT WAS ANOTHER.

9804
05:28:42,698 --> 05:28:43,966
JOB PLACEMENT.

9805
05:28:43,966 --> 05:28:46,502
WITHOUT THEM, WE WOULD NOT HAVE

9806
05:28:46,502 --> 05:28:48,137
ALFONSO WORKING TODAY, WHICH IS

9807
05:28:48,137 --> 05:28:51,607
WHERE HE IS, AND WE HAVE A

9808
05:28:51,607 --> 05:28:53,242
RESPITE PERSON THAT TOOK HIM

9809
05:28:53,242 --> 05:28:55,744
TODAY FOR ME SO THAT I COULD

9810
05:28:55,744 --> 05:28:57,613
PREPARE FOR THIS PRESENTATION

9811
05:28:57,613 --> 05:28:59,648
THAT'S SO IMPORTANT TO MY HEART.

9812
05:28:59,648 --> 05:29:02,718
SO WE TAKE ADVANTAGE OF THOSE.

9813
05:29:02,718 --> 05:29:04,353
LET ME SEE, I'M GOING DOWN MY

9814
05:29:04,353 --> 05:29:04,553
LIST.

9815
05:29:04,553 --> 05:29:08,023
>> THANK YOU SO MUCH,
VONTRIL.

9816
05:29:08,023 --> 05:29:09,325
IT'S 5:00 SO WE'RE GOING TO HAVE

9817
05:29:09,325 --> 05:29:11,327
TO WRAP UP BUT WE REALLY

9818
05:29:11,327 --> 05:29:12,061
APPRECIATE THOSE COMMENTS.

9819
05:29:12,061 --> 05:29:13,762
WE APPRECIATE THE COMMENTS OF

9820
05:29:13,762 --> 05:29:15,998
ALL OF OUR PANELISTS HERE, AND

9821
05:29:15,998 --> 05:29:18,100
YOU ALL FIT A LOT IN TO A COUPLE

9822
05:29:18,100 --> 05:29:19,268
OF QUESTIONS.

9823
05:29:19,268 --> 05:29:21,003
SO I'LL HAND IT OVER TO SHELLI

9824
05:29:21,003 --> 05:29:24,607
AND THEN WE WILL BE WRAPPING UP

9825
05:29:24,607 --> 05:29:24,840
SHORTLY.

9826
05:29:24,840 --> 05:29:27,142
>> LET ME JUST ECHO
SUSAN'S

9827
05:29:27,142 --> 05:29:27,776
THANKS.

9828
05:29:27,776 --> 05:29:30,179
I REALLY WANT TO THANK E.1 FOR

9829
05:29:30,179 --> 05:29:34,550
JOINING AND PARTICIPATING TODAY.

9830
05:29:34,550 --> 05:29:35,351
I THINK WE'LL ALL AGREE THIS HAS

9831
05:29:35,351 --> 05:29:36,619
BEEN A REALLY FANTASTIC MEETING

9832
05:29:36,619 --> 05:29:39,488
AND A REALLY GREAT WAY TO ROUND

9833
05:29:39,488 --> 05:29:43,225
OUT THIS PHASE OF THE IACC.

9834
05:29:43,225 --> 05:29:44,326
SO CONGRATULATIONS AND THANKS TO

9835
05:29:44,326 --> 05:29:44,627
ALL.

9836
05:29:44,627 --> 05:29:46,795
SPECIAL THANKS TO OUR SPEAKERS

9837
05:29:46,795 --> 05:29:48,030
AND ALL OF YOU FOR SHARING

9838
05:29:48,030 --> 05:29:49,898
EITHER YOUR PROGRAMS OR YOUR

9839
05:29:49,898 --> 05:29:51,734
RESEARCH EFFORTS OR YOUR

9840
05:29:51,734 --> 05:29:53,135
PERSONAL EXPERIENCES.

9841
05:29:53,135 --> 05:29:54,003
WE REALLY APPRECIATE THAT.

9842
05:29:54,003 --> 05:29:55,771
THANKS SO MUCH TO OUR COMMITTEE

9843
05:29:55,771 --> 05:29:59,875
MEMBERS FOR ALWAYS MAKING VERY

9844
05:29:59,875 --> 05:30:00,976
ASTUTE COMMENTS, ALL OF WHICH

9845
05:30:00,976 --> 05:30:02,444
SERVE TO ENSURE THAT WE CONTINUE

9846
05:30:02,444 --> 05:30:04,780
TO GROW AND TO IMPROVE UPON THE

9847
05:30:04,780 --> 05:30:07,082
WORK THAT WE DO TOGETHER.

9848
05:30:07,082 --> 05:30:08,617
AND FINALLY A VERY SINCERE

9849
05:30:08,617 --> 05:30:11,687
THANKS TO SUSAN, ONI AND THE

9850
05:30:11,687 --> 05:30:14,823
ENTIRE ONAC AND IACC ORGANIZING

9851
05:30:14,823 --> 05:30:16,692
TEAM FOR RUNNING THE MEETING,

9852
05:30:16,692 --> 05:30:18,827
ORGANIZING US, GETTING ALL OF

9853
05:30:18,827 --> 05:30:20,462
THE REPORTS OUT, AND JUST DOING

9854
05:30:20,462 --> 05:30:22,097
A FANTASTIC JOB OVERALL.

9855
05:30:22,097 --> 05:30:24,767
IT'S BEEN MY PLEASURE TO LISTEN

9856
05:30:24,767 --> 05:30:25,701
TO ALL OF YOU TODAY, SO AGAIN,

9857
05:30:25,701 --> 05:30:27,002
THANK YOU SO MUCH.

9858
05:30:27,002 --> 05:30:28,771
BACK TO YOU, SUSAN.

9859
05:30:28,771 --> 05:30:30,973
>> THANK YOU SO MUCH.

9860
05:30:30,973 --> 05:30:32,307
WE REALLY APPRECIATE ALL OF YOU.

9861
05:30:32,307 --> 05:30:34,076
THANK YOU TO ALL OF OUR

9862
05:30:34,076 --> 05:30:37,346
WONDERFUL COMMITTEE MEMBERS FOR

9863
05:30:37,346 --> 05:30:37,980
THREE GREAT YEARS OF FULL

9864
05:30:37,980 --> 05:30:39,148
COMMITTEE MEETINGS AND YOU KNOW

9865
05:30:39,148 --> 05:30:40,582
THAT YOUR JOB ISN'T COMPLETELY

9866
05:30:40,582 --> 05:30:42,818
OVER BECAUSE WE WILL BE IN TOUCH

9867
05:30:42,818 --> 05:30:44,953
TO FINISH UP SOME PROJECTS.

9868
05:30:44,953 --> 05:30:46,889
THANK YOU AGAIN, AND WE WILL BE

9869
05:30:46,889 --> 05:30:51,260
REACHING OUT VIA EMAIL AND

9870
05:30:51,260 --> 05:30:52,695
POSTING DIFFERENT UPDATES ON OUR

9871
05:30:52,695 --> 05:30:52,928
WEBSITE.

9872
05:30:52,928 --> 05:31:03,272
THANK YOU, EVERYONE.