GOOD MORNING, EVERYONE.
WELCOME TO THE JULY MEETING OF
THE INTERAGENCY AUTISM
COORDINATING COMMITTEE.
IT'S A PLEASURE TO SEE YOU.
I APOLOGIZE THAT I HAD TO BE
VIRTUAL TODAY, BUT IT'S GREAT TO
JOIN YOU.
I DID INTRODUCE MYSELF AT THE
LAST IACC MEETING.
I'M SHELLI AVENEVOLI, CURRENTLY
ACTING DIRECTOR OF NIMH.
AS MANY OF YOU KNOW, DR. JOSHUA
GORDON HAS STEPPED DOWN FROM HIS
POSITION AT NIMH, AND SO NOW I'M
SERVING AS THE CHAIR OF THE IACC
AS WELL AS THE ACTING DIRECTOR
OF NIMH.
AS I SAID, IT REALLY A PLEASURE
TO JOIN YOU TODAY.
I DID INTRODUCE MYSELF JUST A
LITTLE BIT AT THE LAST MEETING,
WIBUT I THOUGHT FOR THOSE OF YOU
WHO MAY NOT HAVE BEEN THERE,
JUST BRIEFLY, I AM A
DEVELOPMENTAL PSYCHOLOGIST BY
TRAINING, WITH A PARTICULAR
PASSION FOR YOUTH MENTAL HEALTH,
UNDERSTANDING THE CAUSES AND
IMPROVING THE LIFE OF YOUNG
PEOPLE.
DURING MY TENURE AT NIMH, I'VE
REALLY HAD THE OPPORTUNITY TO
WORK IN A VARIETY OF PLACES.
I'VE BEEN HERE FOR 23 YEARS NOW,
AND BOTH IN THE INTRAMURAL
RESEARCH PROGRAM AS WELL AS
RUNNING SOME PROGRAMS IN THE
EXTRAMURAL RESEARCH PROGRAM.
WITH A FOCUS PARTICULARLY AS I
MENTIONED ON YOUTH MENTAL
HEALTH, SUICIDE PREVENTION, AND
MATERNAL HEALTH AS WELL.
SO WHILE I AM NEW TO THE CHAIR
POSITION, I'M VERY FAMILIAR WITH
THE ACTIVITIES AND THE REPORTS
OF THE IACC AND I'VE BEEN
ATTENDING THESE COMMITTEE
MEETINGS FOR A LONG TIME.
SO I'M LOOKING VERY MUCH FORWARD
TO WORKING WITH ALL OF YOU TODAY
TO CARRY ON THE IMPORTANT WORK
OF THIS COMMITTEE, AND I ALSO
WOULD LIKE TO TAKE THIS
OPPORTUNITY TO THANK DR. GORDON
FOR HIS SERVICE AS CHAIR OF THE
IACC FOR OVER THE LAST EIGHT
YEARS.
AND OF COURSE A BIG THANK YOU TO
DR. SUSAN DANIELS, FOR HER
CONTINUED SERVICE AS EXECUTIVE
SECRETARY OF THE COMMITTEE.
AND THANKS TO THE WHOLE TEAM AS
WELL, ONI AND TEAM AS WELL.
SO WE'RE VERY EXCITED FOR
TODAY'S AGENDA ITEMS.
WE WILL START THE MORNING WITH
UPDATE FROM THE NATIONAL AUTISM
COORDINATOR, AS WELL AS THE
ROUND ROBIN.
FOLLOWED BY PRESENTATIONS FROM
MEMBERS OF THE FEDERAL
INTERAGENCY WORK GROUP ON AUTISM
OR AS WE LIKE TO CALL IT, FIWA.
WE WILL ALSO DISCUSS COMMITTEE
BUSINESS THIS MORNING, AND THEN
IN THE AFTERNOON, WE WILL HEAR
PUBLIC COMMENTS AND HAVE A
SERIES OF PRESENTATIONS AND
PANEL DISCUSSIONS ON THE TOPIC
OF FAMILY CAREGIVING.
SO WITH THAT I'D LIKE TO TURN IT
OVER TO SUSAN FOR MORE REMARKS
AND THE ROLL CALL.
>> THANK YOU SO MUCH, SHELLI.
I'D ALSO LIKE TO WELCOME
EVERYONE TO THIS MEETING OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE, WHICH WILL BE OUR
LAST ONE FOR THIS ITERATION.
THE LAST FULL COMMITTEE MEETING,
THAT IS.
AS MANY OF YOU KNOW, THE AUTISM
CARES ACT IS IN THE PROCESS OF
RE-AUTHORIZATION AND WE HOPE
THAT IT WILL BE RE-AUTHORIZED
BEFORE THE SUNSET DATE OF
SEPTEMBER 30TH, 2024, AND IN THE
MEANTIME, WE'LL BE WORKING ON
CLOSEOUT ACTIVITIES TO FINISH
ALL THE PROJECTS THAT ARE
REMAINING FOR THIS COMMITTEE.
AND WE'RE JUST SO GRATEFUL TO
THE COMMITTEE FOR THE WORK THAT
YOU'VE DONE OVER THE PAST THREE
YEARS.
SO NOW I WILL TRANSITION OVER TO
GIVING YOU SOME COMMITTEE MEMBER
UPDATES.
I'D LIKE TO WELCOME OUR NEWEST
COMMITTEE MEMBER, MS. DEIRDRA
ASSEY FROM THE DEPARTMENT OF
JUSTICE.
DEIRDRA, WOULD YOU LIKE TO SAY A
FEW WORDS AND INTRODUCE
YOURSELF?
IF YOU'RE HERE?
>> HI, EVERYONE.
MY NAME IS DEIRDRA ASSEY, AND I
AM A POLICY ADVISOR WITH THE
BUREAU OF JUSTICE ASSISTANCE.
ONE OF THE FUNDING ARMS OF THE
DEPARTMENT OF JUSTICE.
THIS IS MY FIRST MEETING AND I'M
VERY EXCITED TO BE HERE.
>> THANK YOU SO MUCH.
WE'D ALSO LIKE TO WELCOME
DR. BRIAN BLOOMER FROM THE
ENVIRONMENTAL PROTECTION AGENCY,
WHO IS SERVING AS AN ALTERNATE
FOR THE EPA TODAY.
BRIAN?
>> YES, THANK YOU VERY MUCH.
MY NAME IS BRYAN BLOOMER.
I'M A LONG-TERM EMPLOYEE, I'VE
WORKED IN EXTRAMURAL RESEARCH
FUNDING AS WELL AS THE
INTRAMURAL PROGRAMS FOR AIR
POLLUTION, CLIMATE CHANGE,
CHEMICAL SAFETY, AND SAFE AND
SUSTAINABLE WATERS.
I'M REALLY GRATEFUL FOR THE
OPPORTUNITY TO SUPPORT DR. THANK
YOU VAL AND REBECCA AND BEING A
PART OF THIS COMMITTEE TODAY AND
OFFERING MY EXPERIENCE IN
ADDITION TO MY PROFESSIONAL
EXPERIENCE, MY PERSONAL
EXPERIENCE AS A FATHER OF TWO
PEOPLE WHO ARE DIAGNOSED ON THE
AUTISM SPECTRUM.
SO THANK YOU VERY MUCH FOR THE
OPPORTUNITY.
>> THANK YOU, BRYAN.
FINALLY, I'D LIKE TO NOTE THAT
SOME OF OUR COMMITTEE MEMBERS
HAVE PROFESSIONAL UPDATES.
SO DR. JENNY PHAN IS NOW
RESEARCH ASSISTANT PROFESSOR AND
ASSISTANT DIRECTOR OF COMMUNITY
ENGAGEMENT IN THE CENTER FOR
ADAPTIVE SYSTEMS OF BRAIN/BODY
INTERACTIONS AT GEORGE MASON
UNIVERSITY.
CONGRATULATIONS, JENNY.
AND IN ADDITION, MS. SAM CRANE
IS NOW AN INDEPENDENT CONSULTANT
AND SERVING ON THE BOARD OF THE
AUTISTIC SELF ADVOCACY NETWORK.
CONGRATULATIONS, SAM.
NOW I'D LIKE TO TURN IT OVER TO
THE ONAC DEPUTY DIRECTOR FOR
SOME HOUSEKEEPING ANNOUNCEMENTS.
>> GOOD MORNING, EVERYBODY.
HOUSEKEEPING NOTES FOR MEMBERS
ATTENDING IN PERSON.
PLEASE RAISE YOUR HAND TO BE
RECOGNIZED TO SPEAK AND DURING
THE VOTES THAT WE'LL HAVE DURING
COMMITTEE BUSINESS.
YOU CAN JUST RAISE YOUR HAND IN
THE ROOM.
AND WHEN YOU'D LIKE TO SPEAK,
PLEASE TURN ON YOUR TABLETOP
MICROPHONE AND TURN IT OFF WHEN
YOU'RE FINISHED.
FOR OUR MEMBERS ATTENDING
VIRTUALLY, YOU CAN USE THE RAISE
HAND FEATURE IN ZOOM TO BE
RECOGNIZED.
FOR VOTING, PLEASE USE THE ZOOM
POLLS THAT YOU'LL SEE IN ZOOM.
STAY MUTED AND KEEP YOUR CAMERA
OFF DURING PRESENTATIONS AND
BREAKS.
AND YOU CAN TURN YOUR CAMERA ON
DURING DISCUSSIONS AND UNMUTE
YOURSELF TO SPEAK.
FOR MEMBERS WHO WISH TO COMMENT
IN WRITING, PLEASE SEND YOUR
COMMENTS IN ZOOM TO THE PERSON
LABELED "SEND COMMENTS HERE,"
STEVEN ISAACSON AND HE'LL READ
THEM OUT LOUD TO THE COMMITTEE.
PLEASE KEEP YOUR COMMENTS BRIEF
SO WE CAN HEAR FROM AS MANY
PEOPLE AS POSSIBLE DURING THE
DISCUSSIONS.
FOR THOSE WHO WOULD LIKE CLOSED
CAPTIONING, THAT'S AVAILABLE IN
ZOOM FOR COMMITTEE MEMBERS, AS
WELL AS ON VIDEOCAST FOR MEMBERS
OF THE VIEWING PUBLIC.
IN THE ROOM THERE'S A SENSORY
ROOM AVAILABLE DOWN THE HALL FOR
THOSE WHO MIGHT NEED A SENSORY
BREAK.
PLEASE DO NOT USE THAT ROOM FOR
ANY KIND OF NOISY ACTIVITIES OR
DURING THE LUNCH BREAK.
WE ALSO HAVE A ZOOM ROOM DOWN
THE HALL FOR THOSE WHO MIGHT
NEED TO STEP OUT TO TAKE A CALL
OR MEETING AND WE'LL HAVE SPACE
AVAILABLE FOR LUNCH AS WELL.
THERE'S RESTROOMS IN THE MAIN
LOBBY, AND PLEASE SILENCE YOUR
CELL PHONES TO NOT DISRUPT THE
MEETING.
AND I'LL TURN IT BACK OVER TO
SUSAN.
>> THANK YOU.
ALL RIGHT.
SO NOW WE WILL GO THROUGH THE
ROLL CALL FOR THE COMMITTEE.
AND WE DO HAVE MANY MEMBERS WHO
ARE ONLINE TODAY, SO FEEL FREE
TO UNMUTE YOURSELF AND TURN ON
YOUR CAMERA WHEN I CALL YOUR
NAME.
SO FIRST, SHELLI AVENEVOLI.
>> PRESENT.
>> ALLYSON DEAN FROM ACF.
>> GOOD MORNING.
I'M HERE.
>> ANYONE ELSE FROM ACF?
JENNIFER JOHNSON FROM ACL.
>> HERE.
>> KAMILA MYSTERY TOLD ME SHE
MIGHT BE JOINING A LITTLE LATE.
ARE YOU HERE YESTERDAY, KAMILA?
FROM HRQ?
I THINK SHE'LL BE JOINING US
SOON.
OH, ROBYN --
>> YES, ROBYN FROM ARC IS HERE.
KAMILA WILL BE JOINING IN A
LITTLE BIT.
>> STUART SHAPIRA, I'M HERE AS
THE ALTERNATE AND KARO KARYL WIL
JOIN AT 11:00.
>> THANK YOU SO MUCH, STUART.
FROM CMS, JODI SI FOR MELISSA
HARRIS?
NOT GOING TO BE HERE TODAY.
TIFFANY FARCHIONE IS NOT GOING
TO BE ABLE TO JOIN US BUT DO WE
HAVE MARTINE SOLAGES?
>> GOOD MORNING, MARTINE SEW
SOLAGES, FDA.
LAUREN FROM HRSA?
>> PRESENT.
>> THANK YOU.
INDIAN HEALTH SERVICE, BARBARA
ROLAND?
>> GOOD MORNING, I'M HERE.
>> THANK YOU, BARBARA.
FROM THE NIH, DR. MONICA
BERTAGNOLLI BUT PROBABLY THE
ALTERNATE JANE SIMONE IS IN THE
SEAT NEXT TO ME.
I THINK SHE WILL BE HERE A
LITTLE BIT LATER TODAY.
THE NATIONAL INSTITUTE OF CHILD
HEALTH AND HUMAN DEVELOPMENT?
>> I'M HERE.
>> ALICE KAU?
>> YES.
I'M ATTENDING AS AN ALTERNATE
FOR DR. BIANCHI.
>> THANK YOU SO MUCH, ALICE.
THE NATIONAL INSTITUTE OF
DEAFNESS AND OTHER COMMUNICATION
DISORDERS?
>> YES, GOOD MORNING.
JUDITH COOPER.
I'M HERE REPRESENTING OUR
DIRECTOR, DEB TUCCI.
THANK YOU.
>> THANK YOU.
THE NATIONAL INSTITUTE OF
ENVIRONMENTAL HEALTH SCIENCES?
>> HELLO.
THIS IS CINDY LAWLER.
I'M REPRESENTING AS ALTERNATE
FOR RICK WOYCHIK, NATIONAL
INSTITUTE OF ENVIRONMENTAL
HEALTH SCIENCES.
GOOD MORNING, EVERYONE.
>> GOOD MORNING.
THANK YOU.
THE NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDERS AS
STROKE?
>> HI, I'M CHRISTY HARDY, I'M
ATTENDING AS AN ALTERNATE FOR
DR. WALTER KOROSHETZ, I'M ALSO
IN SCOTLAND SO I HOPE THAT MY
WIFI HOLDS.
I'LL PROBABLY BE MUTED AND WITH
MY CAMERA OFF.
>> THANK YOU, KRISTI.
SAMHSA, SUNNY PATEL?
>> PRESENT.
>> THANK YOU.
DEPARTMENT OF DEFENSE?
NICOLE WILLIAMS?
>> HI, EVERYBODY.
PRESENT.
>> GOOD MORNING.
THE DEPARTMENT OF EDUCATION,
KRISTI KAVULIC?
OR EMILY WEAVER?
AND EPA, BRYAN BLOOMER.
>> YES, I'M PRESENT.
THANK YOU.
>> THANK YOU.
FOR THE DEPARTMENT OF HOUSING
AND URBAN DEVELOPMENT, LEAH
LOZIER?
>> GOOD MORNING.
>> GOOD MORNING, LEAH.
DEPARTMENT OF JUSTICE, DEIRDRA
ASSEY?
>> GOOD MORNING, PRESENT.
>> THANK YOU.
THE DEPARTMENT OF LABOR, SCOTT
MICHAEL ROBERTSON?
I THINK MAYBE JOINING US A
LITTLE LATER BECAUSE HE'S
SEATED -- OH, THERE YOU ARE.
>> GOOD MORNING.
I'M PLANNING TO TRY TO BE IN
PERSON THIS AFTERNOON, BUT JUST
VIRTUAL THIS MORNING.
THANKS.
>> OH, GREAT.
THANK YOU.
ALL RIGHT.
SSA.
ALISON MARVIN?
>> GOOD MORNING.
THIS IS ALISON MARVIN.
>> GOOD MORNING.
AND THE VETERANS'
ADMINISTRATION.
>> THIS IS SCOTT PATTERSON HERE
FORMAT MILLER.
>> THANKS, SCOTT.
AND NOW I'LL GO THROUGH THE
PUBLIC MEMBERS.
MARIA MERCEDES AVILA?
>> GOOD MORNING, I'M HERE.
>> GOOD MORNING.
ALICE CARTER?
>> HI, GOOD MORNING.
I'M HERE ALSO.
>> GOOD MORNING.
SAM CRANE?
I THINK WILL BE JOINING US IN A
LITTLE BIT.
>> SHE'S TAKING SOMEONE TO
SCHOOL SO SHE'LL BE HERE
BRIEFLY.
>> GREAT.
THANK YOU.
AISHA DICKERSON?
TOM FRASIER?
>> PRESENT.
>> THANK YOU.
AND DINAH GAZNER?
TOLD ME THAT SHE MAY OR MAY NOT
BE -- OH.
>> THANK YOU.
>> THANKS, EVERYBODY.
I'LL BE POPPING IN AND OUT
TODAY.
IT'S DISSERTATION TIME.
>> GOOD MORNING AND GOOD LUCK
WITH YOUR DISSERTATION.
ALISHA HALL DAY?
GREG JOHNSON?
>> GOOD MORNING.
YETTA MYRICK?
>> GOOD MORNING, HAPPY SUMMER.
I'M HERE.
>> HAPPY SUMMER.
LINDSEY NEBEKER?
THANK YOU.
JENNY MAY PHAN?
>> HI, EVERYONE, I'M HERE.
>> THANK YOU.
CAMILLE PROCTOR?
SUSAN RIVERA?
>> GOOD MORNING, PRESENT.
>> MATTHEW SIEGEL.
>> HERE, THANK YOU.
>> THANK YOU.
LAURA IVANOVA SMITH?
>> HERE.
AND I LIKE TO GO BY IVANOVA.
THANK YOU.
>> THANKS.
SORRY, YOU'RE LISTED ON THE
ROSTER LIST HERE AS LAURA.
THAT'S WHY I JUST --
> HARI SLEEN
VA SIN?
HELEN TAGER-FLUSBERG IS NOT
GOING TO BE PRESENT, IS AWAY.
JULIE TAYLOR?
>> PRESENT.
>> THANK YOU.
AND PAUL WANG.
>> GOOD MORNING, EVERYONE.
PRESENT.
>> GOOD MORNING.
WONDERFUL TO SEE MANY OF YOU
VIRTUALLY AND DID I MISS
ANYBODY?
IS THERE ANYONE HERE
REPRESENTING AN AGENCY THAT I
DIDN'T CALL ON OR ANYONE ELSE?
OH, JALYNN PRINCE, I DON'T KNOW
HOW I MISSED YOU.
I JUST SKIPPED OVER YOU ON LIST.
SORRY.
WELL, YOU WERE HERE.
THANK YOU SO MUCH.
AND THANKS FOR POINTING THAT
OUT.
>> HI.
I THINK I MISSED MY
INTRODUCTION.
KRISTI KAVULIC FROM DEPARTMENT
OF EDUCATION.
>> GREAT TO SEE YOU, CHRISTY.
ANYBODY ELSE?
ALL RIGHT.
AND WE'LL ALSO KEEP TRACK IF
PEOPLE START POPPING IN ONLINE.
OH, AND ROB OXENDORF, NOT A
MEMBER OF THE COMMITTEE BUT
WATCHING TODAY CAN SAY HI.
>> GOOD MORNING, EVERYBODY.
ROB OCHSENDORF WITH THE NATIONAL
SCIENCE FOUNDATION.
HAPPY TO BE HERE.
>> THANK YOU.
ANYONE ELSE?
ALL RIGHT.
THEN I THINK THAT COMPLETES OUR
ROLL CALL.
NEXT IS THE MINUTES, UNLESS DO
YOU HAVE ANYTHING TO SAY,
SHELLI?
>> I DO NOT.
THANK YOU.
>> ALL RIGHT.
YOU'RE JUST -- YOU'RE ON THE
SCREEN SO I JUST WANTED TO MAKE
SURE THAT YOU DIDN'T HAVE
ANYTHING.
SO THEN WE'LL GO THROUGH THE
APPROVAL OF THE MINUTES.
YOU ALL HAVE THE MINUTES FROM
THE APRIL MEETING IN YOUR
PACKETS AND IT WAS SENT OUT TO
YOU IN ADVANCE.
THIS SUMMARIZES SOME OF THE
PROCEEDINGS OF THAT MEETING.
DOES ANYONE HAVE ANY CONCERNS
ABOUT THE MINUTES OR ANY
CORRECTIONS THAT YOU WOULD LIKE
TO HAVE MADE?
SO I'M NOT SEEING ANYONE.
IN THE ROOM OR IS THERE ANYONE
VIRTUALLY THAT HAS ANY COMMENTS
ABOUT THE MINUTES?
NOT SEEING ANYONE.
CAN I GET A MOTION ON THE FLOOR
TO ACCEPT THE MINUTES?
>> THIS IS YETTA MYRICK.
I CAN PUT A MOTION FORWARD.
>> THANK YOU.
CAN WE GET A SECOND?
>> I SECOND THAT.
>> THANK YOU SO MUCH.
ALL IN FAVOR, PLEASE RAISE YOUR
HAND IN ZOOM OR RAISE YOUR HAND
IN THE ROOM.
EVERYONE IN THE ROOM HAS RAISED
THEIR HAND.
HOW ARE WE ON ZOOM?
OKAY.
SO LOOKS LIKE WE HAVE A MAJORITY
THAT ARE IN FAVOR OF ACCEPTING
THE MINUTES.
ANYBODY OPPOSED TO ACCEPTING THE
MINUTES?
NONE IN THE ROOM.
ANY ON ZOOM?
IT'S A LITTLE HARD TO TELL
BECAUSE OF THE -- MAYBE THE
HANDS ARE STILL RAISED FROM THE
PREVIOUS THING.
IS THERE ANYONE -- AND YOU CAN
ALSO SPEAK UP IF YOU WANT TO
ABSTAIN FROM VOTING.
IT LOOKS LIKE FROM ALL
APPEARANCES HERE THAT WE HAVE A
UNANIMOUS VOTE TO ACCEPT THE
MINUTES SO WE'LL ACCEPT THEM AS
WRITTEN.
IF YOU DO HAVE ANY LAST-MINUTE
CORRECTIONS OR CHANGES, JUST
PLEASE LET THE OFFICE KNOW AND
WE'LL GET THOSE POSTED
IMMEDIATELY AFTER THE MEETING.
SO THANK YOU SO MUCH.
AND I THINK AT THIS POINT, I
WILL CONTINUE THEN WITH THE
NATIONAL AUTISM COORDINATOR
UPDATE, UNLESS ANYONE HAS ANY
QUESTIONS.
ALL RIGHT.
SO THEN WE WILL MOVE FORWARD
WITH THAT.
SO I HAVE A FEW UPDATES FOR YOU
TODAY FROM THE WHITE HOUSE, SOME
LEGISLATIVE UPDATES, FEDERAL
COMMITTEE UPDATES, FEDERAL
DEPARTMENT AND AGENCY
HIGHLIGHTS, WHICH JUST ADD ON TO
WHAT PEOPLE MIGHT WANT TO SHARE
IN ROUND ROBIN, AND SOME
ADDITIONAL UPDATES.
SORRY ABOUT THAT.
THE REMOTE SUDDENLY DECIDED IT
WASN'T GOING TO MOVE.
OKAY, THANK YOU.
READY FOR THE NEXT SLIDE.
SO FIRST AN UPDATE FROM THE
WHITE HOUSE.
IN SUPPORT OF PRESIDENT BIDEN'S
EXECUTIVE ORDER ON INCREASING
ACCESS TO HIGH-QUALITY CARE AND
SUPPORTING CAREGIVERS, HHS
SELECTED 20 STATES TO
PARTICIPATE IN TWO SEPARATE
TECHNICAL ASSISTANCE PROGRAMS
THAT TOGETHER WILL HELP
PARTICIPATING STATES BETTER
RECRUIT, TRAIN, AND RETAIN
DIRECT CARE WORKERS, WHICH WE
KNOW IS A REALLY IMPORTANT ISSUE
IN THIS COMMUNITY, AND PROVIDE
HOME AND COMMUNITY-BASED
SERVICES FOR OLDER ADULTS AND
PEOPLE WITH DISABILITIES.
AND WE PROVIDED THE LINK THERE
FOR THE PRESS RELEASE.
SO NEXT, THE BIDEN-HARRIS
ADMINISTRATION UNVEILED A FINAL
RULE THAT WILL PROTECT AND
IMPROVE HOW MILLIONS OF ELIGIBLE
PEOPLE APPLY FOR, RENEW AND
MAINTAIN HEALTHCARE COVERAGE
THROUGH MEDICAID, THE CHILDREN'S
HEALTH INSURANCE PROGRAM, AND
THE BASIC HEALTH PROGRAM.
WE PROVIDED THE PRESS RELEASE.
HERE.
ALSO WITH THIS UPDATE, THE WHITE
HOUSE OFFICE OF SCIENCE AND
TECHNOLOGY POLICY HAS A WORKING
GROUP FOR THE NATIONAL SCIENCE
AND TECHNOLOGY COUNCIL, AND THIS
WORKING GROUP IS CALLED THE
DISABILITY DATA INTERAGENCY
WORKING GROUP.
I'M A MEMBER OF THIS WORKING
GROUP, AND SEVERAL OF MY FEDERAL
COLLEAGUES ARE MEMBERS OF THIS
WORKING GROUP THAT IS WORKING TO
COORDINATE ACTIVITIES TO
STRENGTHEN THE FEDERAL
GOVERNMENT'S USE OF DISABILITY
DATA TO ADVANCE EQUITY FOR
PEOPLE WITH DISABILITIES.
AND THE MEMBERSHIP CROSSES
MULTIPLE DEPARTMENTS AND
AGENCIES, AND THIS WORKING GROUP
IS GOING TO BE WORKING TOWARD
CREATING A FEDERAL EVIDENCE
AGENDA ON DISABILITY EQUITY BY
THE FALL OF 2024, SO IN JUST A
FEW SHORT MONTHS.
AND THEY RECENTLY HELD A SERIES
OF VIRTUAL LISTENING SESSIONS
WITH INDIVIDUALS AND
ORGANIZATIONS FROM THE
DISABILITY COMMUNITY.
AND INDIVIDUALS REPRESENTING
AUTISM AND IDD WERE INCLUDED IN
THAT.
AND THERE ARE ALSO SOME
INTERVIEWS WITH FEDERAL SUBJECT
MATTER EXPERTS THAT ARE
UNDERWAY.
AND THE WORKING GROUP
IMPORTANTLY HAS PUBLISHED A
REQUEST FOR INFORMATION CALLED
"NOTICE OF AVAILABILITY AND
REQUEST FOR INFORMATION, FEDERAL
EVIDENCE AGENDA ON DISABILITY
EQUITY" TO COLLECT PUBLIC INPUT
ON THE USE OF DISABILITY DATA,
HOW WE CAN ENSURE THAT FEDERAL
DISABILITY DATA IS INCLUSIVE OF
ALL DIFFERENT KINDS OF
DISABILITIES, HOW TO MAKE THE
DATA ACCESSIBLE, AND MANY OTHER
RELATED ISSUES.
AND THIS RFI WAS RELEASED ON MAY
30TH AND IS CLOSING ON
JULY 15TH.
SO JUST IN ANOTHER WEEK.
I WOULD HIGHLY ENCOURAGE MEMO
WERS OMEMBERSOF OUR COMMITTEE AN
THE PUBLIC WHO ARE INTERESTED IN
DISABILITY DATA TO LOOK AT THIS
RFI AND PROVIDE RESPONSES
BECAUSE IT'S REALLY IMPORTANT WE
GET REPRESENTATION OF AUTISM,
IDD, OTHER
NEURODIVERSITY-RELATED ISSUES IN
THIS RFI SO THAT THE COMMITTEE
CAN USE THAT INFORMATION TO
FORMULATITY RECOMMENDATIONS
AROUND DISABILITY DATA
COLLECTIONS IN THE FUTURE.
SO THE LINK IS PROVIDED THERE.
THERE'S THE FEDERAL REGISTER
NOTICE.
IF YOU HAVE TROUBLE FINDING IT,
YOU CAN ALSO EMAIL ME AND I'LL
BE HAPPY TO SHARE THE RFI WITH
YOU.
FOR LEGISLATIVE UPDATES, I'D
LIKE TO SHARE JUST A BRIEF
UPDATE ABOUT THE CARES ACT AND
WHAT'S HAPPENING.
SO THE KEY PROVISIONS ARE
RE-AUTHORIZATION OF THE IACC
THROUGH SEPTEMBER 2029, AND
CURRENTLY IMPROVEMENTS TO ENSURE
APPROPRIATE CHANNELING OF
RESOURCES TOWARDS THE MOST
IMPACTFUL FORMS OF RESEARCH.
LANGUAGE TO INCLUDE INDIVIDUALS
ACROSS THE FULL SPECTRUM AND
FULL LIFESPAN.
AND INDIVIDUALS WITHIN THE
AUTISM COMMUNITY HAVING AN
OPPORTUNITY TO ENGAGE IN
RESEARCH AND THE RESEARCH
PROCESS AND OTHER ACTIVITIES.
SO IN FEBRUARY, A BILL WAS
INTRODUCED IN THE HOUSE, AND
THAT WAS CO-SPONSORED BY
REPRESENTATIVES CHRIS SMITH AND
HENRY CUELLAR.
ON THE 14TH OF FEBRUARY, THERE
WAS A HOUSE COMMITTEE ON ENERGY
AND COMMERCE, SUBCOMMITTEE ON
HEALTH HEARING ABOUT THIS BILL.
IN MAY, THERE WAS ANOTHER
HEARING TO CONSIDER A MARKUP OF
23 BILLS THAT INCLUDED THE
AUTISM CARES ACT OF 2024.
AND ON JUNE 12TH, THE HOUSE
COMMITTEE ON ENERGY AND COMMERCE
VOTED 42-0 TO REPORT THE BILL TO
THE FULL HOUSE.
SO THAT'S WHERE THAT SITS AT THE
MOMENT, AND THE SENATE ALSO HAS
THEIR VERSION.
SO ANYWAY, THIS IS UNDERWAY.
WE ARE HOPEFUL THAT IT WILL BE
RE-AUTHORIZED BY ACCEPT 30TH,
BUT OUR OFFICE WILL CREATE A
WEBPAGE TO KEEP TRACK OF ALL THE
DIFFERENT EVENTS AS WE DID IN
PAST YEARS FOR THE
RE-AUTHORIZATION, SO BE LOOKING
FOR THAT PAGE.
WE'LL SEND OUT AN EMAIL TO
NOTIFY PEOPLE THAT IT'S UP AND
WE'LL CONTINUE POSTING UPDATES
THERE.
I ALSO JUST WANTED TO POINT OUT
THAT THERE WAS A PIECE OF
LEGISLATION THAT IS GOING TO BE
RECEIVING SOME ACTION TODAY
THAT'S RELEVANT TO THE AUTISM
COMMUNITY.
SO THERE IS AN AMENDMENT IN A
BILL FOR AGRICULTURE THAT IT
WOULD PREVENT FDA FROM BANNING
DEVICES THAT HAVE BEEN ORDERED
FOR AN INDIVIDUAL BY A COURT,
WHICH WOULD INCLUDE ELECTRIC
SHOCK DEVICES.
AND THE APPROPRIATIONS COMMITTEE
IS EXPECTED TO MARK UP AND VOTE
ON THE BILL TODAY.
SO I'M SURE THAT ADVOCACY
ORGANIZATIONS THAT ARE TRACKING
THIS WILL BE KEEPING PEOPLE
POSTED ON IT, BUT JUST WANTED
YOU TO BE AWARE OF THAT
ACTIVITY.
SO FOR FEDERAL COMMITTEE
UPDATES, I'M GOING TO MENTION A
FEW UPDATES FROM DIFFERENT
COMMITTEES.
SO THE INTERAGENCY COMMITTEE ON
DISABILITY RESEARCH JUST RELEASE
A COUPLE OF IMPORTANT DOCUMENTS.
SO THERE IS A WHITE PAPER ON THE
FEDERAL STATUTORY DEFINITIONS OF
DISABILITY, WHICH HAS BEEN
UPDATED NOW TO REFLECT THE
LATEST IN DISABILITY
DEFINITIONS.
YOU MAY BE INTERESTED IN
CHECKING THAT OUT, AND WE WILL
POST IT ON THE IACC WEBSITE
SOMEWHERE.
WE WILL GET THAT THERE AS WELL.
THE ICDR ALSO RELEASED THE
SURVEYING THE LANDSCAPE OF
DISABILITY DATA AND STATISTICS
TOOLKIT THAT HAS INFORMATION
ABOUT DISABILITY DATA
COLLECTIONS.
THE ICDR HELD A FEW DIFFERENT
LUNCH AND LEARN WEBINARS, AND
THEIR LATEST WAS A SERIES OF
PRESENTATIONS BY REPRESENTATIVES
OF FEDERAL AGENCIES THAT PROVIDE
FUNDING FOR DISABILITY AND REHAB
RESEARCH.
AND THEY ALSO HELD THEIR ANNUAL
STAKEHOLDER MEETING RECENTLY,
AND THESE ARE RECORDED AN YOU
CAN FIND THEM ON THE ICDR
WEBSITE.
THE RAISE FAMILY CAREGIVING
ADVISORY COUNCIL, WE'LL BE
HEARING FROM TODAY BUT THEY HAD
A JOINT MEETING RECENTLY WITH
THE ADVISORY COUNCIL TO SUPPORT
GRANDPARENTS RAISING
GRANDCHILDREN ON JUNE 13TH, AND
WE WILL HEAR UPDATES ON THAT
LATER.
THE NATIONAL COUNCIL ON
DISABILITY RECENTLY HELD A
MEETING ON JUNE 27TH AND WE
PROVIDED THE LINK FOR THAT IN
THAT MEETING THERE.
THE DISABILITY ADVISORY
COMMITTEE MET ON MAY 16TH AND
INCLUDED A DIALOGUE ON DIGITAL
ACCESSIBILITY, AND YOU CAN WATCH
THE RECORDING AT THE LINK
PROVIDED.
THE COORDINATING COUNCIL ON
ACCESS AND MOBILITY HAD AN
UPDATE THAT THE FEDERAL TRANSIT
ADMINISTRATION ANNOUNCED THAT 17
PROJECTS IN 15 STATES WILL
RECEIVE FUNDING TO INCLUDE
PUBLIC TRANSPORTATION FOR PEOPLE
WITH DISABILITIES.
OLDER ADULTS AND INDIVIDUALS
WITH LOW INCOMES, SO WE PROVIDED
SOME INFORMATION ON THE LINK
THERE ABOUT THAT.
THE FEDERAL PARTNERS IN
TRANSITION IS CONTINUING TO WORK
ON THEIR STRATEGIC PLAN THAT IS
ABOUT YOUTH WITH DISABILITIES.
AND THEIR GENERAL ASSEMBLY
MEETING WAS HELD ON MAY 16TH
FEATURING A PRESENTATION ON AI
AND DISABILITY EMPLOYMENT AND
THEY'RE PLANNING THEIR NEXT
MEETINGS FOR SEPTEMBER.
THE CHILDREN'S INTERAGENCY
COORDINATING COUNCIL IS HOLDING
AN EVENT TO EXPLORE ISSUES AND
OPPORTUNITIES RELATED TO BENEFIT
ACCESS AND UTILIZATION FOR
CHILDREN AND THEIR FAMILIES THAT
ARE EXPERIENCING POVERTY.
SO YOU MAY BE INTERESTED IN THAT
AND WE'VE PROVIDED THE
REGISTRATION LINK.
AGAIN I TRY TO GIVE YOU UPDATES
ABOUT THESE OTHER COMMITTEES
BECAUSE THEY'RE DOING REALLY
IMPORTANT WORK THAT INTERSECTS
WITH OUR WORK.
WE DEFINITELY DO NOT WANT TO
DUPLICATE EFFORT BUT WE ALSO
WANT TO BE AWARE OF WHAT'S
HAPPENING IN THESE OTHER FEDERAL
AGENCY COMMITTEES.
FEDERAL ADVISORY COMMITTEES.
SO A COUPLE OF UPDATES ON
FEDERAL DEPARTMENTS AND
AGENCIES.
THE U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES MARKS THE
ONE-YEAR ANNIVERSARY OF
PRESIDENT BIDEN'S EXECUTIVE
ORDER ON INCREASING ACCESS TO
HIGH-QUALITY CARE AND SUPPORTING
CAREGIVERS.
WHICH GOES ALONG WITH OUR THEME
TODAY.
AND WE HAVE A LINK TO THE
STATEMENTS.
THE ADMINISTRATION FOR COMMUNITY
LIVING ANNOUNCED NEARLY
$2 MILLION TO SUPPORT STATE
IMPLEMENTATION OF THE NATIONAL
STRATEGY TO SUPPORT FAMILY
CAREGIVERS, WHICH I'M SURE WE'LL
BE HEARING MORE ABOUT TODAY AS
WELL.
THE U.S. DEPARTMENT OF JUSTICE'S
CIVIL RIGHTS DIVISION AND HHS
ADMINISTRATIOADMINISTRATION FORY
LIVING AND OFFICE FOR CIVIL
RIGHTS HELD AN EVENT TO
CELEBRATE THE 25TH ANNIVERSARY
OF THE OLMSTEAD DECISION.
SO YOU CAN SEE THE RECORDING
THERE ON THAT LINK, AND ACL DID
A BLOG POST ON IT.
AND THE HHS OFFICE FOR CIVIL
RIGHTS ALSO FINALIZED A RULE
STRENGTHENING PROTECTIONS
AGAINST DISABILITY
DISCRIMINATION UNDER SECTION 504
OF THE REHAB ACT, AND THERE'S A
PRESS RELEASE FOR THAT.
I ALSO WANTED TO HIGHLIGHT THAT
NIMH HAS A NEW WEBINAR SERIES
COMING UP THAT YOU MIGHT BE
INTERESTED IN.
IT'S CALLED THE DISABILITY
EQUITY AND MENTAL HEALTH
RESEARCH WEBINAR SERIES.
AND THE FIRST TWO WEBINARS HAVE
BEEN SCHEDULED.
THE FIRST ONE IS ON AUGUST 8TH
FEATURING NEV JONES ON
TRANSFORMING MENTAL HEALTH
DISABILITY RESEARCH THROUGH LI
LIVED EXPERIENCE, LEADERSHIP AND
CO-PRODUCTION.
THE SECOND ONE IS DIELLE
LUNDBERG AND JESSICA CHEN,
FRAMEWORK FOR UNDERSTANDING
STRUCTURAL ABLEISM IN
HEALTHCARE.
THERE WILL BE ADDITIONAL
WEBINARS AS WELL.
SO KEEP AN EYE OPEN FOR THAT.
AND WE'LL BE PUTTING THAT UP ON
THE EVENTS SECTION OF OUR
WEBSITE AS WELL.
I WANTED TO SHARE AN UPDATE ON A
NON-GOVERNMENTAL ACTIVITY THAT I
PARTICIPATED IN RECENTLY.
THIS JUNE, THE 17TH SESSION OF
THE CONFERENCE OF STATES PARTIES
TO THE UN CONVENTION ON THE
RIGHTS OF PERSONS WITH
DISABILITIES TOOK PLACE IN
NEW YORK.
THIS IS A MEETING OF OVER 150
NATIONS TO TALK ABOUT DISABILITY
RIGHTS AROUND THE WORLD AND THE
OVERARCHING THEMES FOR THIS YEAR
WERE RE-THINKING DISABILITY
INCLUSION IN PREPARATION FOR THE
SUMMIT OF THE FUTURE.
AND SOME ADDITIONAL THEMES WERE
DISABILITY EMPLOYMENT,
TECHNOLOGY INNOVATION, INCLUDING
A LOT ABOUT A.I., AND THE
PERSONS WITH DISABILITY AND HOW
THEY'RE INCLUDED IN RESPONSE TO
HUMANITARIAN EMERGENCIES.
AND I HAD THE PRIVILEGE OF
SERVING ON THE U.S. DELEGATION
TO THE U.N. FOR THIS MEETING,
ALONG WITH OFFICIALS FROM THE
U.S. DEPARTMENT OF STATE, USAID,
ACL, CDC, AND THE U.S. ACCESS
BOARD.
AND I TRIED TO BE AVAILABLE TO
PROVIDE ASSISTANCE WITH REGARD
TO AUTISM, NEURODIVERSITY AND
IDD.
AND I ALSO WANTED TO POINT OUT
THAT IACC MEMBER DENA DP. ASSNER
SPOKE ON EMPLOYMENT AND FAMILY
SUPPORT AT A SIDE EVENT THAT WAS
SPONSORED BY THE GOVERNMENT OF
MALTA.
IT WAS WONDERFUL TO SEE THERE
WERE THREE SEPARATE SIDE EVENTS
THAT WERE FOCUSED ON AUTISM.
SO THERE WAS ONE THAT WAS AN
AUSTRALIAN EVENT FEATURING THEIR
NATIONAL STRATEGY AND THEY HAD
VERY HIGH LEVEL GOVERNMENT
OFFICIALS FROM AUSTRALIA ATTEND
THE MEETING TO TALK ABOUT THEIR
COORDINATION AROUND AUTISM AND
THEY HAVE NOT ONLY A NATIONAL
STRATEGY FOR AUTISM BUT THEY
HAVE ONE FOR DISABILITY THAT
THEY'RE TRYING TO COORDINATE,
AND THEY'RE PUTTING A NUMBER OF
DIFFERENT PROGRAMS IN PLACE TO
TRY TO SUPPORT PEOPLE ON THE
AUTISM SPECTRUM, WHICH WAS
REALLY EXCITING.
AND THERE WAS A SOUTH AFRICAN
VIRTUAL EVENT FEATURING AUTISTIC
VOICES IN AFRICA.
AND THERE WAS A COLLABORATIVE
EVENT SPONSORED BY IRELAND, NEW
ZEALAND, HUNGARY AND THE WHO ON
SUPPORTING AUTISTIC PEOPLE IN
SOCIETY AND THEY TALKED A LOT
ABOUT SELF ADVOCACY.
PERSONALLY I FELT THIS WAS
REALLY IMPORTANT THAT AUTISM WAS
GETTING THIS LEVEL OF VISIBILITY
AT THE U.N., AND HOPEFULLY THAT
WILL CONTINUE.
SO KEEP YOUR EYES OPEN FOR THAT
NEXT SUMMER.
IT TAKES PLACE IN JUNE.
AND I THINK THIS IS MY FINAL
UPDATE.
I WANTED TO POINT OUT THAT
THERE'S A NEW NEURODIVERSITY AS
WORK PLAYBOOK, FEDERAL EDITION,
THAT WAS DEVELOPED BY THE
UNIVERSITY OF WASHINGTON AIMED
AT HELPING FEDERAL AGENCIES
ESTABLISH NEURODIVERSITY
EMPLOYMENT PROGRAMS AND CREATE A
MORE INCLUSIVE WORKPLACE.
AND SO FEDERAL PARTNERS, YOU'LL
WANT TO CHECK THAT OUT AND IF
YOU'RE TRYING TO SUPPORT
NEURODIVERSITY EMPLOYMENT IN
YOUR AGENCY, THAT WILL BE AN
IMPORTANT GUIDING DOCUMENT TO BE
HELPFUL TO THEM.
EVERYTHING THAT I TALKED ABOUT
IS IN A DOCUMENT THAT YOU'VE ALL
RECEIVED.
IT POSTED ON THE WEB AND IT'S
JUST MORE IN PARAGRAPH FORMAT.
SO ARE THERE ANY QUESTIONS ABOUT
THIS UPDATE THAT I'VE PROVIDED?
OH, YES, YETTA.
>> SO JUST ONE THOUGHT.
I'M THINKING ABOUT ONE OF THE
FIRST UPDATES YOU PROVIDED WITH
THE RFA THAT'S OPEN FOR FIVE
DAYS, THAT WAS NEW INFORMATION
TO ME, AND I WONDER IF THERE'S A
WAY FOR US TO -- FOR YOUR OFFICE
TO SHARE OUT WITH THE COMMITTEE
A LITTLE BIT EARLIER, LIKE WHEN
THINGS ARE -- LIKE IF IT'S GOING
TO BE CLOSE TO THE TIME THAT WE
HAVE THE MEETING AND IT'S DUE,
JUST BECAUSE I WOULD LOVE TO
PROVIDE A COMMENT BUT GIVEN MY
SCHEDULE, I DON'T KNOW IF I'M
GOING TO BE ABLE TO DO IT IN
FIVE DAYS.
SO I THINK IT'S IMPORTANT FOR US
TO HAVE THIS INFORMATION JUST A
LITTLE BIT EARLIER OR IF THERE
IS A WAY, SO THAT'S ONE OPTION.
ANOTHER OPTION IS IF THERE IS A
WAY TO BE LINKEDIN FOR THOSE OF
US WHO ARE NOT FEDERAL MEMBERS
TO KNOW WILLIS SERV WHICH LIST E
ON, NOT THAT WE NEED MORE EMAIL
BUT TO KNOW WHEN THESE THINGS
ARE COMING DOWN THE PIKE, I
THINK WOULD BE HELPFUL.
>> WE ACTUALLY ARE THINKING
ABOUT DOING MAYBE A MONTHLY OR I
DON'T KNOW WHAT THE TIME FRAME
WOULD BE UPDATE EMAIL.
I KNOW PEOPLE GET OVERWHELMED
WITH EMAILS AND WE DON'T WANT TO
FLOOD YOU WITH EMAILS, BUT THERE
ARE TIMES WHEN THERE ARE THINGS
LIKE THIS COMING UP.
I ALSO -- I DID POST IT ON MY
LINKEDIN BUT I KNOW NOT
EVERYBODY READS ALL THE SOCIAL
MEDIA ALL THE TIME.
AND WE DID TWEET IT.
>> I'M TRYING NOT TRYING TO GIVU
MORE WORK.
>> NO, NOT AT ALL.
>> BUT AS WE THINK ABOUT HOW DO
WE MAKE THESE THINGS MORE
ACCESSIBLE TO THE LARGER
COMMUNITY AND WE WANT A DIVERSE,
YOU KNOW, COMMENTS COMING IN, I
THINK GIVING MORE TIME AND SPACE
FOR THAT WOULD BE HELPFUL.
>> ABSOLUTELY.
SO WE COULD MAYBE FOR THE NEXT
ITERATION OF THE IACC LOOK AT
HAVING -- I DON'T KNOW IF IT
WOULD BE A WEEKLY, BIWEEKLY OR
MONTHLY EMAIL THAT SUMMARIZES
SOME OF THESE THINGS.
BUT IF YOU'RE LOOKING FOR THE
INFORMATION IN A QUICK WAY, YOU
CAN ALSO VISIT MY LINKEDIN.
I DID A POST ABOUT IT.
AND WE WILL BE HAPPY TO SEND TO
YOU DIRECTLY AS WELL.
BUT IT WOULD BE GREAT TO HAVE
COMMENTS FROM THE AUTISM
COMMUNITY.
INCLUDED THERE.
ANY OTHER COMMENTS OR QUESTIONS?
ALL RIGHT.
SO THEN WE WILL MOVE ON TO ROUND
ROUNDROBIN.
SO WE HAVE A FEW MINUTES FOR
PEOPLE TO SHARE ANY UPDATE FROM
YOUR AGENCIES OR YOUR
ORGANIZATIONS OR JUST YOUR OWN
PERSONAL WORK IN THE AUTISM
FIELD.
IF YOU HAVE ANYTHING TO SHARE.
IS THERE ANYONE THAT WOULD LIKE
TO SHARE?
I'M JUST LOOKING AROUND THE
ROOM.
I'M LOOKING AT JALYNN.
>> THERE'S A VERY INTERESTING
PROJECT THAT HAS BEEN STARTED BY
THE HUNTSMANS IN UTAH AND IT'S
CALLED "STOP THE STIGMA
TOGETHER," AND IT'S ABOUT MENTAL
HEALTHCARE.
THEY HAD THEIR SECOND SUMMIT
ABOUT THREE WEEKS AGO, AND I'VE
HAD THE OPPORTUNITY OF
PARTICIPATING FOR TWO TIMES WITH
THEM AS THEY'RE LAUNCHING THIS
ACROSS THE COUNTRY.
AND ONE OF THE THINGS THAT WE'RE
VERY INTERESTED IN IS
REPRESENTING THE AUTISTIC
POPULATION AND ALSO CAREGIVERS.
BECAUSE AUTISM IS NOT A MENTAL
HEALTH CONDITION BUT THERE ARE
PEOPLE ON THE SPECTRUM WHO WILL
HAVE MENTAL HEALTH CHALLENGES,
AND THAT IS NOT BEING ADDRESSED
FULLY YET, AND PEOPLE ARE STILL
WRAPPING THEIR MINDS AROUND IT.
AND ALSO THE IMPORTANCE OF
CAREGIVERS HAVING GOOD SUPPORT
AND FEELING THAT THEY CAN REACH
OUT WITHOUT STIGMA BECAUSE IF
YOU DON'T HAVE HEALTHY
CAREGIVERS, YOU DON'T HAVE
HEALTHY INDIVIDUALS.
AND SO IT'S AN INTERESTING
SITUATION, AND IF ANYBODY HAS
ANY QUESTIONS ABOUT IT, IT IS
OPEN TO OTHERS ACROSS THE
NATION, THE AMERICAN ALZHEIMER'S
DISETHE AMERICAN AD COUNCILIS P.
IT'S GOING TO BE AN IMPORTANT
MOVEMENT FOR AMERICA IN THE
WHOLE BUT ALSO FOR OUR
POPULATION.
>> THANK YOU.
I SAW A HAND OVER HERE.
IVANOVA?
>> YES.
I HAVE TWO UPDATES.
THE FIRST ONE IS FROM THE
UNIVERSITY OF WASHINGTON LAND.
THIS FALL, THERE WILL BE THE
10-YEAR ANNIVERSARY OF THE
SELF-ADVOCATE DISCIPLINE.
I STARTED THAT DISCIPLINE AS
BEING THE FIRST LAND TRAINEE
BACK IN 2014.
SO WE'RE GOING TO BE CELEBRATING
OUR 10-YEAR ANNIVERSARY.
SO I JUST WANTED TO SHARE THAT.
AND ALSO IN WASHINGTON, WE MADE
A BILL CALLED NOTHING ABOUT US
WITHOUT US SO THAT IT MAKES
PEOPLE WITH DIRECT LIVED
EXPERIENCE GET TO HAVE A SAY ON
WORKFORCES, TASK FORCES AND
COMMITTEES THAT DIRECTLY IMPACT
THEM.
AND SO IT'S CALLED NOTHING ABOUT
US WITHOUT US.
I JUST WANTED TO SHARE THAT, AS
A CELEBRATORY THING.
THANK YOU.
>> THANK YOU.
AND WE'LL GO TO THE WEB HERE, WE
SEE THAT PAUL WANG HAS HIS HAND
RAISED AND THEN TOM, YOU'LL BE
NEXT.
SO PAUL?
>> THANK YOU, SUSAN.
I JUST WANT TO HIGHLIGHT THE
BULLETS THAT WE HAVE UPDATES
FROM THE SIMONS FOUNDATION IN
THE MEETING MATERIALS.
FIRST OF ALL, WE MAKE AVAILABLE
QUITE A NUMBER OF RESEARCH
RESOURCES TO FACILITATE RESEARCH
RELATED TO AUTISM AND
INFORMATION FOR THAT CAN BE
FOUND AT SAFARI.ORG, SFARI.ORG.
SECONDLY, WE HAVE AN ANNUAL
GRANTING PROGRAM THAT USED TO BE
CALLED BRIDGE TO INDEPENDENCE.
NOW IT'S CALLED FELLOWS TO
FACULTY.
IT IS FOR SENIOR POSTDOCTORAL
RESEARCHERS TO TRANSITION INTO
THEIR FIRST INDEPENDENT FACULTY
POSITIONS, AND THIS IS
SPECIFICALLY TARGETED TO
CANDIDATES WHO HAVE BACKGROUNDS
AND EXPERIENCES THAT
RUNDREPRESENTED IN SCIENCE.
WHETHER THAT IS A MINORITY
RACIAL OR ETHNIC GROUP OR
INDIVIDUALS WHO HAVE AUTISM
THEMSELVES OR, FOR EXAMPLE,
MILITARY VETERANS AS WELL.
FINALLY I JUST WANT TO SHARE
THAT THE SIMONS FOUNDATION IS
EXPANDING ITS AUTISM IN THE
WORKPLACE INITIATIVE, HAVING
LAUNCHED A GRANT PROGRAM THAT
GIVES FUNDING TO NON-PROFIT
EMPLOYERS TO SUPPORT AUTISTIC
INDIVIDUALS IN THE WORKPLACE.
THANK YOU.
>> THANK YOU, PAUL.
WAS THE AUDIENCE ABLE TO HEAR
ANY OF THAT?
I DON'T THINK SO.
>> ONLINE?
I HEARD IT ONLINE.
>> YOU HEARD IT ONLINE?
>> I DID, YEAH.
>> I COULD ALSO HEAR IT.
I HAD TO TURN UP MY VOLUME.
>> I'M SORRY TO ASK YOU TO
REPEAT IT AND MAYBE TURN UP YOUR
VOLUME A LITTLE BIT BECAUSE OUR
AUDIENCE IN THE ROOM WASN'T ABLE
TO HEAR.
I COULD HEAR IT BECAUSE I'M A
LITTLE CLOSE TO THE SPEAKERS.
>> RIGHT.
I'LL TRY TO SPEAK MORE LOUDLY
ALSO.
JUST POINTING OUT THE BULLETS
THAT WE HAVE IN THE ROUND ROBIN
UPDATES MEETING MATERIAL FROM
THE SIMONS FOUNDATION.
FIRST OF ALL THERE ARE A NUMBER
OF RESEARCH RESOURCES THAT WE
MAKE AVAILABLE TO RESEARCHERS
WHETHER THEY ARE FROM ACADEMIA
OR INDUSTRY OR OTHER SPHERES
THROUGH AN APPLICATION PROCESS.
PLEASE SEE SFARI.ORG FOR
INFORMATION ABOUT THAT.
SECONDLY, WE HAVE AN AWARD
PROGRAM WHICH IS NOW CALLED THE
FELLOWS TO FACULTY AWARD FOR
SENIOR POSTDOCS WHO ARE
TRANSITIONING TO AN INDEPENDENT
FACULTY POSITION.
THIS IS TARGETED SPECIFICALLY TO
CANDIDATES WHO HAVE BACKGROUNDS
AND EXPERIENCES THAT ARE
UNDERREPRESENTED IN SCIENCE,
WHETHER THEY ARE FROM A MINORITY
RACIAL OR ETHNIC GROUP OR THEY
ARE INDIVIDUALS WITH AUTISM OR,
FOR EXAMPLE, MILITARY VETERANS
WHO ARE UNDERREPRESENTED IN
SCIENCE.
AND FINALLY, WE AT THE SIMONS
FOUNDATION HAVE A NEW AUTISM IN
THE WORKPLACE INITIATIVE GRANT
PROGRAM.
THIS IS FOR NON-PROFIT EMPLOYERS
TO BUILD THE INFRASTRUCTURE AND
TRAINING THAT ARE NEEDED TO
SUPPORT AUTISTIC INDIVIDUALS IN
THEIR WORKPLACE.
THANK YOU.
>> THANK YOU SO MUCH.
AND WE ALSO DO HAVE THE
INFORMATION IN THE PACKET FOR
THE ROUND ROBIN, SO IF YOU WANT
TO JUST READ IT, YOU CAN GO TO
THE PACKET.
ALL RIGHT.
AND THEN TOM FRASIER.
>> THANKS, SUSAN.
I WANTED TO JUST MENTION A
COUPLE OF THINGS RELEVANT TO
AUTISM SPEAKS WORK, AND
OBVIOUSLY THERE'S THINGS IN THE
PACKET, I WON'T REITERATE THOSE,
BUT PLEASE DO READ THOSE.
BUT I JUST WANT TO HIGHLIGHT A
COUPLE OF THINGS FROM AUTISM
CARES, THE SUPPLEMENT WHAT SUSAN
SAID EARLIER.
SO THERE'S LANGUAGE IN THE BILL
TO CREATE A NEW AUTISM
INTERVENTION RESEARCH NETWORK
FOR COMMUNICATION NEEDS.
THERE'S ALSO LANGUAGE IN THE
BILL AROUND AGES AS FOCUS FOR
FUTURE RESEARCH, AND THE
GOVERNMENT ACCOUNTABILITY
OFFICE, THERE'S LANGUAGE IN
THERE TO REQUIRE THEM TO ISSUE A
STUDY AND REPORT ON INCREASING
THE NUMBER OF DEVELOPMENTAL AND
BEHAVIORAL PEDIATRICIANS.
THE OTHER UPDATES FOR US AROUND
OUR ADVOCACY EFFORTS FOR THE
AUTISM FAMILY CAREGIVERS ACT,
OBVIOUSLY THAT'S RELEVANT TO
TODAY'S MEETING, THE BIPARTISAN
LEGISLATION CREATES A NEW PILOT
PROGRAM AT HRSA TO FUND LOCAL
CAREGIVER SKILLS TRAINING SITES.
25 SITE IN 15 STATES.
AND THE BILL CURRENTLY HAS 34
CO-SPONSORS.
BY THE WAY, AUTISM CARES HAS 44
BIPARTISAN CO-SPONSORS ON THAT
BILL NOW.
AND THEN LASTLY FOR ME, THE
OFFICE OF CAREGIVER HEALTH, SO
AUTISM SPEAKS JUST RECENTLY
JOINED A COALITION WITH THE
ROSALYN CARTER INSTITUTE, AND
SEVERAL OTHER ORGANIZATIONS,
MANY OTHER ORGANIZATIONS.
I THINK IT'S 167 STAKEHOLDERS
THAT SIGNED THE LETTER THAT
WOULD CALL FOR CREATION OF A NEW
OFFICE OF CAREGIVER HEALTH
WITHIN HHS, AND THE MISSION
WOULD BE ADVANCING HEALTH AND
WELL-BEING OF FAMILY CAREGIVERS
ACROSS THE NATION.
I DO JUST WANT TO EMPHASIZE, WE
ARE LOOKING FOR FOLKS THAT WOULD
BE INTERESTED IN POTENTIALLY
BEING A SITE FOR AUTISM SPEAKS
CAREGIVER SKILLS TRAINING,
PARENT TRAINING AND INFORMATION
CENTER, AND IF YOU COULD CONTACT
AUTISM SPEAKS, THE LINK IS IN
THE UPDATES, THE ROUND ROBIN
UPDATES.
OUR MISSING RESOURCE ALSO HAS
BEEN UPDATED WITH NOW MORE THAN
13,000 INDIVIDUALS, WITH GENOMIC
DATA AND LOTS OF CLINICAL DATA
AS WELL FOR RESEARCHERS, AND
THEN LASTLY THE WHO UNICEF
REPORT, THE 2023 GLOBAL REPORT
ON CHILDREN AND DEVELOPMENTAL
DISABILITIES HAS BEEN RELEASED
AND THEY'RE HOLDING A WEBINAR ON
JULY 30TH, 8:30 TO 10:00 IF
PEOPLE ARE INTERESTED, THEY'RE
GOING TO USE THAT WEBINAR TO
DISSEMINATE THE REPORT.
THANKS.
>> THANK YOU SO MUCH.
ANYONE ELSE WANT TO SHARE FOR
ROUND ROBIN?
BRYAN.
>> YES, THANK YOU.
SO I'M BRYAN BLOOMER.
I WORK IN THE OFFICE OF THE
ADMINISTRATOR IN THE OFFICE OF
CHILDREN'S HEALTH PROTECTION.
OUR DIRECTOR OF THE OFFICE OF
CIVIL RIGHTS HAS UNDERGONE A
MULTIYEAR INITIATIVE TO CREATE A
SAFE AND WELCOMING ENVIRONMENT
FOR PERSONS WITH DISABILITIES.
AS PART OF THAT EFFORT, HE'S
BEEN WORKING HARD TO BASELINE
THE NUMBER OF EMPLOYEES WHO ARE
CURRENTLY WORKING AT THE AGENCY
WITH DISABILITIES.
AS THAT HAS TO BE SELF-REPORTED
IN OUR MANAGEMENT TRACKING
SYSTEMS, AND I THINK THE LAST
TWO YEARS, HE HAS BEEN FAIRLY
SUCCESSFUL AT THE END OF THIS
MULTIYEAR EFFORT, AND HAS
ESTABLISHED WHAT I BELIEVE IS A
REASONABLE BASELINE AND BOTH
EMPLOYEE COUNSELING, SUPPORT
SERVICES, AS WELL AS ONGOING
TRAINING FOR THE SENIOR
EXECUTIVE AND POLITICAL
LEADERSHIP AT THE AGENCY.
SO I DON'T KNOW IF THAT HAD BEEN
REPORTED OUT PREVIOUSLY, BUT WE
HAVE SIGNIFICANT MOVEMENT IN THE
AGENCY IN MY OPINION, AND I JUST
WANTED TO MAKE SURE EVERYBODY
WAS AWARE OF THAT AND CAN SEE
JUAN CARLOS POTENTIALLY AS A
RESOURCE.
HE'S HAPPY TO HELP ANYBODY ELSE
WHO MAY BE UNDERTAKING A SIMILAR
INITIATIVE.
>> THANK YOU FOR THAT UPDATE,
BRYAN.
AND YETTA.
>> SO ONE MORE THING FROM ME.
I THINK MANY OF YOU KNOW I SERVE
AS THE CDC'S ACTOR-ONLY
AMBASSADOR TO THE DISTRICT OF
COLUMBIA I DON'T THINK THIS IS
IN THE ANNOUNCEMENT ABOUT --
THAT'S IN THE PACKET, BUT THE
PROGRAM IS 20 YEARS OLD THIS
YEAR SO I WANT TO GIVE A SHOUT
OUT ABOUT THAT.
ALSO THROUGH MY WOR WORK ESPECIY
BEING A PARENT OF A NOW ADULT,
AUTISTIC ADULT, IS THINKING
ABOUT HOW TO BRIDGE GAPS BETW
BETWEEN -- MATERIALS AND AUTISM
SO HOT OFF THE PRESS, I ACTUALLY
NEED TO SEND THIS TO THE CDC
FOLKS, CREATED A DOCUMENT CALLED
USING THE CDC'S LEARN THE
SCIENCE ACT EARLY MATERIALS POST
AUTISM DIAGNOSIS OR EDUCATIONAL
CLASSIFICATION TO HELP FAMILIES
THINK ABOUT WHAT THEY CAN --
WHAT GOALS THEY MIGHT BE
THINKING ABOUT FOR THEIR CHILD
USING THE LEARNING SCIENCE ACT
EARLY MATERIAL. SO ONE VERY
QUICK EXAMPLE IS IF A PARENT IS
INTERESTED IN BUILDING SOCIAL
AND EMOTIONAL SKILLS, THEY CAN
TALK TO THEIR PSYCHOLOGIST OR
SPECIAL EDUCATION TEACHER OR FOR
OBVIOUSLY LANGUAGE AND
COMMUNICATION, THEY CAN TALK TO
THE SPEECH AND LANGUAGE
PATHOLOGIST, BUT AFTER LOOKING
AT THE LEARN THE SIGNS MILESTONE
AND SAY OKAY, MY CHILD MIGHT NOT
BE DOING THIS RIGHT NOW BUT I
WANT MY CHILD TO BE ABLE TO --
SUPPORT THEM IN DOING -- GETTING
TO THIS MILESTONE AND HAVING
THAT CONVERSATION.
SO I THINK IT'S REALLY IMPORTANT
EARLY ON TO ENSURE THAT FAMILIES
ARE -- HAVE THE RESOURCES THAT
THEY NEED TO HAVE THESE
CONVERSATIONS WITH PROVIDERS.
SO JUST WANTED TO SHARE THAT
OUT.
>> THANK YOU, YETTA.
AND SCOTT ROBERTSON HAS AN
UPDATE.
>> THANKS.
AND SORRY FOR NOT HAVING
PROVIDED THIS PREVIOUSLY IN THE
UPDATED -- THE UPDATE DOCUMENT.
JUST A FEW SHORT THINGS FROM US
AT THE DEPARTMENT OF LABOR, AND
WE HAVE PREVIOUSLY ANNOUNCED THE
THEME OF ACCESS TO GOOD JOBS FOR
ALL AS THE THEME FOR NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH COMING UP IN OCTOBER.
WE RECENTLY HAD WEBINARS ON COG
NISSABILITIES AND NEURODIVERSITY
AND MENTAL HEALTH FOR THE JOB
ACCOMMODATION NETWORK, AND OUR
TECHNICAL ASSISTANCE AND POLICY
DEVELOPMENT CENTER FOR EMPLOYERS
ALSO RECENTLY HAD A WEBINAR ON
THE MENTAL WELL-BEING OF GEN-Z
WORKERS.
ADDITIONALLY, WE HAVE RECENTLY
ANNOUNCED THE AWARDING OF
COOPERATIVE AGREEMENTS TO HELP
YOUTH AND YOUNG ADULTS WITH
DISABILITIES ADDRESS OBSTACLES
TO EMPLOYMENT, AND THE
ANNOUNCEMENT EMPHASIZED
ESPECIALLY THAT $10.5 MILLION
HAS BEEN AWARDED TO FUND THE
FIRST YEAR OF THESE FOUR-YEAR,
FIVE-YEAR COOPERATIVE
AGREEMENTS, DEVELOPING
STRATEGIES TO ASSIST YOUTH AND
YOUNG ADULTS WITH DISABILITIES,
PARTICULARLY IN UNDERSERVED
COMMUNITIES IN SUCCESSFULLING
TRANSITIONING TO THE WORKFORCE.
THOSE AWARDS HAVE BEEN GRANTED
TO THE CONNECTICUT DEPARTMENT OF
LABOR, THE KANSAS DEPARTMENT OF
COMMERCE, MINNESOTA KPT OF
ECONDEPARTMENTAND THE NEW YORK F
LABOR.
>> THANK YOU, SCOTT.
ANY OTHER UPDATES?
I THINK WE ARE COMPLETED WITH
THE UPDATES.
SO NEXT WE WILL MOVE ON TO THE
FIWA PRESENTATIONS, AND WE'LL
HAVE A BREAK AT 11:35.
BUT FOR THE FIWA PRESENTATION,
AT THE JANUARY IACC MEETING, WE
HAD A SERIES OF PRESENTATIONS BY
MEMBERS OF THE FIWA.
THE FEDERAL INTERAGENCY WORK
GROUP ON AUTISM.
, TO SHARE UPDATE FROM THEIR
AGENCIES ABOUT RELEVANT PROGRAMS
AND INITIATIVES AND ACTIVITIES
RELATED TO AUTISM AND
DISABILITIES.
WE DIDN'T HAVE TIME TO HAVE ALL
THE FIWA MEMBERS PRESENT AT THE
JANUARY MEETING, SO WE'RE GOING
TO HAVE AN ADDITIONAL SET OF
MEMBERS OF THE FIWA SHARE THEIR
UPDATE HERE.
AND TO GIVE YOU BACKGROUND ON
THE FIWA AGAIN, THE FEDERAL
INTERAGENCY WORK GROUP ON AUTISM
IS A GROUP -- AN ALL-FEDERAL
VOLUNTARY GROUP OF FEDERAL
OFFICIALS THAT MEETS ON A
REGULAR BASIS TO WORK ON FEDERAL
COORDINATION AROUND AUTISM, AND
I'M THE CHAIR OF THAT COMMITTEE
AND WE MEET IN BETWEEN IACC
MEETINGS TO WORK ON
IMPLEMENTATION OF THE STRATEGIC
PLAN, AND ALSO TO WORK
COLLABORATIVELY ON OTHER
PROJECTS SUCH AS REPORTS TO
CONGRESS THAT WERE REQUIRED FOR
US TO COMPLETE AND ANY OTHER
REQUIREMENTS IN THE CARES ACT.
SO THAT'S ALWAYS GOING ON IN THE
BACKGROUND, AND THEY ALSO HEAR
UPDATES ABOUT THE IACC FROM ME
AT THOSE MEETINGS AND THE FIWA
HAS A LITTLE BIT BROADER
MEMBERSHIP THAN THE IACC, SO
THERE ARE A FEW AGENCIES AND
DEPARTMENTS THAT ARE NOT ON THE
IACC THAT ALSO ATTEND FIWA
MEETINGS.
AND IT'S A WONDERFUL GROUP OF
PEOPLE AND THIS PRESENTATION
WILL GIVE YOU THE OPPORTUNITY TO
HEAR FROM SEVERAL OF THOSE
MEMBERS, AND I'M ALSO PLEASED TO
SAY THAT WE HAVE NEW MEMBERS TO
THE FIWA FROM THE HHS OFFICE OF
THE ASSISTANT SECRETARY OF
PREPAREDNESS AND RESPONSE OR AS
ASPR, AND ALSO FROM THE FEDERAL
EMERGENCY MANAGEMENT AGENCY FROM
THE DEPARTMENT OF HOMELAND
SECURITY AND WE'LL BE HEARING
FROM THEM TODAY.
SO OUR SPOKERS T SPEAKERS ARE MN
RAMOS FROM HRSA, DR. NICOLE
WILLIAMS, FROM THE DEPARTMENT OF
DEFENSE, BOTH OF WHOM ARE ON THE
IACC.
DR. ALLYSON DEAN, ALSO ON THE
IACC FROM THE ADMINISTRATION FOR
CHILDREN AND FAMILIES.
BARBARA ROLAND, IACC MEMBER FROM
THE INDIAN HEALTH SERVICE AND
ALSO ON FIWA.
AND THEN WE'LL BE HEARING FROM
DR. MAXINE CALMAN FROM ASPR,
OFFICE OF THE ASSISTANT
SECRETARY FOR PREPAREDNESS AND
RESPONSE AND DR. SHERMAN GILLAMS
JR. FROM THE FEDERAL EMERGENCY
MANAGEMENT AGENCY.
SO EACH SPEAKER WILL HAVE FIVE
MINUTES TO SPEAK, AND I'D ASK
EACH YOU HAVE PLEASE TO GIVE A
LITTLE INTRODUCTION TO
YOURSELVES AS YOU BEGIN YOUR
PRESENTATIONS.
AFTER THE LAST SPEAKER, WE'LL
HAVE SOME TIME FOR THE COMMITTEE
TO DO SOME Q & A WITH YOU.
SO WE'LL BEGIN WITH LAUREN
RAMOS.
>> GOOD MORNING.
I'M LAUREN RAMOS FROM THE HEALTH
RESOURCES AND SERVICES
ADMINISTRATION OR HRSA AS WE'RE
KNOWN.
I'M THE DIRECTOR OF OUR DIVISION
OF MATERNAL AND CHILD HEALTH
WORKFORCE DEVELOPMENT AND SERVE
AS THE LEAD FOR OUR AUTISM
INVESTMENTS.
IN CASE YOU'RE NOT FAMILIAR WITH
HRSA, HRSA PROVIDES EQUITABLE
HEALTHCARE FOR THE NATION'S
HIGHEST NEED COMMUNITIES.
OUR AUTISM INVESTMENTS FOCUS ON
THREE AREAS.
TRAINING, HEALTHCARE AND OTHER
PROFESSIONALS TO SCREEN, REFER,
AND PROVIDE SERVICES FOR
CHILDREN AND YOUTH WITH AUTISM
OR OTHER DEVELOPMENTAL
DISABILITIES.
WE ALSO PROMOTE EVIDENCE-BASED
INTERVENTIONS THROUGH OUR
RESEARCH PROGRAM.
AND LASTLY ENSURE THE
IMPLEMENTATION OF BEST PRACTICES
FOCUSED ON TRANSITION FOR YOUTH.
I'LL BRIEFLY GO THROUGH EACH OF
THOSE AREAS STARTING WITH OUR
TRAINING PROGRAMS.
HRSA SUPPORTS TWO TRAINING
PROGRAMS.
THE FIRST IS THE LEADER SHEP
EDUCATION AND DEVELOPMENTAL AND
OTHER RELATED DISABILITIES OR
LEND PROGRAM, WHICH IS MUCH
EASIER TO SAY.
THE LEND PROGRAM PROVIDES
INTERDISCIPLINARY TRAINING FOR
HEALTHCARE AND OTHER PROVIDERS
AND PROFESSIONALS THAT ADDRESS
NEEDS OF CHILDREN AND YOUTH WITH
AUTISM, DEVELOPMENTAL
DISABILITIES AND REALLY PROMOTE
THE HEALTH OF THOSE WITH
DISABILITIES.
THERE ARE 60 LEND PROGRAMS
ACROSS THE COUNTRY SO WE HAVE A
NATIONAL REACH ON THE MAP ON THE
SLIDE, YOU CAN SEE THOSE STATES
THAT ARE IN THE DARKER BLUE HAVE
AT LEAST ONE LEND PROGRAM.
THOSE IN LIGHT BLUE HAVE A
PARTNERSHIP WITH AN EXISTING
LEND PROGRAM, AND I JUST WANT TO
ACKNOWLEDGE THAT WE HAVE SEVERAL
IACC MEMBERS THAT ARE CONNECTED
TO LENDS.
YOU ALREADY HEARD THAT TODAY.
WE HAVE PROJECT DIRECTORS,
FACULTY AND FORMER TRAINEES.
WE THANK YOU AND ACKNOWLEDGE Y
YOU.
THE LEND PROGRAMS PROVIDE A
FELLOWSHIP PROGRAM FOR THOSE
REALLY INTERESTED IN AUTISM AND
THE HEALTH OF PEOPLE WITH
DISABILITIES.
SO PEOPLE GO TO THE LEND PROGRAM
FROM THEIR GRADUATE OR
POSTGRADUATE TRAINING PROGRAM
AND GET REALLY INTENSIVE
ACADEMIC, CLINICAL AND
LEADERSHIP AND COMMUNITY-BASED
OPPORTUNITIES TO REALLY
UNDERSTAND WHAT IT'S LIKE TO
HAVE A DISABILITY AND THEN TO BE
ABLE TO SCREEN, REFER AND
PROVIDE SERVICES AS APPROPRIATE
TO THOSE WITH AUTISM AND
DEVELOPMENTAL DISABILITIES.
THE HALLMARK OF LEND IS ITS
INTERDISCIPLINARY NATURE.
WE REACH OVER 25 DISCIPLINES,
THOSE INCLUDE MEDICINE, NURSING,
PSYCHOLOGY, SOCIAL WORK,
PHYSICAL THERAPY, AUDIOLOGY,
OCCUPATIONAL THERAPY AND MORE.
AND A REALLY IMPORTANT AND
UNIQUE FEATURE OF LEND WAS THAT
WE INCLUDE IN MEANINGFUL WAYS
FAMILIES OF PEOPLE WITH
DISABILITIES AND SELF-ADVOCATES
IN OUR PROGRAM.
EACH YEAR LEND PROGRAMS REACH
ABOUT 18,000 TRAINEES AND OVER
380,000 WITH CONTINUING
EDUCATION.
OUR SECOND TRAINING PROGRAM IS
THE DEVELOPMENTAL BEHAVIORAL
PEDIATRICS PROGRAM OR DBP.
DBP PROGRAMS REALLY WORK TO
INCREASE ACCESS TO EVALUATION
AND SERVICES FOR CHILDREN WITH
DEVELOPMENTAL AND BEHAVIORAL
CONCERNS.
WE SUPPORT 13 PROGRAMS AND EACH
OF THOSE PROGRAMS SUPPORT THE
THREE-YEAR FELLOWSHIP FOR
PEDIATRICIANS THAT ARE
INTERESTED IN SPECIALIZING IN
DBP.
THEY ALSO PROVIDE SIGNIFICANT
TRAINING AND CONTINUING
EDUCATION TO OTHER PROVIDERS TO
GIVE THEM SOME GROUNDING IN DBP
ISSUES.
IN OUR LAST COMPETITION, WE
EXPANDED THE PROGRAM TO INCLUDE
A BROADER FOCUS ON SOME
INTENSIVE TRAINING FOR
PEDIATRICIANS IN DBP ISSUES,
REALLY THINKING ABOUT ACCESS TO
DIAGNOSTIC SERVICES, DECREASING
WAIT LISTS AND REALLY THINKING
ABOUT SPREADING DBP KNOWLEDGE.
THOSE PROGRAMS REACH OVER 1900
TRAINEES EACH YEAR AND ANOTHER
38,000 PRACTICING PROFESSIONALS
THROUGH CONTINUING EDUCATION.
HRSA ALSO SUPPORTS AN
INTERDISCIPLINARY TECHNICAL
ASSISTANCE CENTER THAT IS HOUSED
AT THE ASSOCIATION OF UNIVERSITY
CENTERS ON DISABILITIES THAT
SUPPORT THE LEND AND DBP
NETWORKS.
I'M GOING TO SHIFT AND TALK A
LITTLE ABOUT OUR AUTISM RESEARCH
PORTFOLIO NOW.
WE SUPPORT RESEARCH IN THREE
TYPES OF PROGRAMS.
THE AUTISM RESEARCH NETWORKS,
AUTISM SINGLE INVESTIGATOR
INNOVATION PROGRAMS, AND
INVESTIGATOR INITIATED PROGRAMS.
YOU CAN SEE KIND OF WHAT THAT
LOOKS LIKE ON THIS SLIDE.
BUT ESSENTIALLY WE HAVE FOUR
AUTISM RESEARCH NETWORKS, ONE
FOCUSED ON PHYSICAL HEALTH
ASPECTS OF AUTISM, ONE ON
BEHAVIORAL HEALTH, ONE ON
HEALTHY WEIGHT FOR CHILDREN AND
YOUTH WITH AUTISM AND
DEVELOPMENTAL DISABILITIES, AND
ONE ON DBP ISSUES.
THE RESEARCH NETWORKS PROVIDE A
MULTICENTER SCIENTIFIC
COLLABORATION FOR RESEARCH INTO
THAT TOPIC AREA AS WELL AS
DEVELOPMENT AND DISSEMINATION OF
GUIDELINES.
THE SINGLE INVESTIGATOR
INNOVATION PROGRAMS, OF WHICH WE
HAVE TWO, FOCUS ON MORE EMERGING
OR UNDERSTUDIED ISSUES.
WE SUPPORT ONE, A LONGITUDAL
DATA ANALYSIS KIND OF LOOKING AT
THE EARLY ORIGINS OF AUTISM AND
LIFE COURSE ASPECTS OF AUTISM
AND A SECOND THAT'S FOCUSED ON
TRANSITION.
AND LASTLY, OUR SMALLEST PIECE
OF OUR RESEARCH PORTFOLIO IS THE
INVESTIGATOR INITIATED PROGRAMS.
THOSE ALLOW INDIVIDUALS TO
SUBMIT APPLICATIONS TO STUDY
SOMETHING TO REPLICATE AN
INTERVENTION OR A SERVICE TO
TEST SOMETHING WITH AN
UNDERSERVED POPULATION, OR TO DO
SOME SECONDARY DATA ANALYSIS.
ALL OF OUR RESEARCH WORK ALIGNS
TO THE IACC STRATEGIC PLAN AND
WE REALLY TRY TO WORK TO ADVANCE
THE PLAN AS WELL.
OUR NEXT AREA IS WHAT WE CALL
THE BEST PRACTICES PROGRAM.
WE HAVE RECENTLY REDESIGNED AND
COMPETED THAT PROGRAM THIS YEAR
TO HAVE A SPECIFIC FOCUS ON
TRANSITION FOR YOUTH WITH AUTISM
AND/OR EPILEPSY.
WE'RE REALLY THINKING ABOUT
THOSE YOUTH WITH THE HIGHEST
SUPPORT NEEDS AND SO THESE ARE
NEW PROGRAMS THAT WILL SUPPORT
STATES OR OTHER APPLICANTS TO BE
ABLE TO DEVELOP FRAMEWORKS TO
REALLY THINK ABOUT WHAT A
SUCCESSFUL TRANSITION FROM CHILD
TO ADULT SERVING SYSTEMS.
SO THINKING ABOUT THE RANGE OF
TRANSITION SERVICES, HEALTHCARE,
EMPLOYMENT, EDUCATION, ALL OF
THE THINGS THAT WE NEED FOR
QUALITY OF LIFE FOR YOUTH, AND A
SIGNIFICANT FOCUS ON FAMILY
SUPPORT AND CAREGIVING SUPPORT.
THIS PROGRAM WILL ALSO SUPPORT A
NATIONAL TA CENTER TO REALLY BE
ABLE TO REPLICATE AND SPREAD
THOSE BEST PRACTICES.
WE'LL BE AWARDING THAT FIRST
ROUND OF GRANTS IN THE COMING
WEEKS, SO STAY TUNED FOR MORE
INFORMATION THERE.
BEFORE I CLOSE, I JUST WANTED TO
HIGHLIGHT THE SUPPORTING ACCESS
FOR EVERYONE OR SAFE INITIATIVE.
HRSA SUPPORTED THIS INITIATIVE
THROUGH THE LEADERSHIP OF OUR
DEVELOPMENTAL BEHAVIORAL
PEDIATRICS RESEARCH NETWORK TO
DEVELOP A CONSENSUS STATEMENT
THAT WAS REALLY DRIVEN BY PUBLIC
INPUT AND A RANGE OF HEALTH
PROFESSIONALS, INDIVIDUALS, AND
SELF-ADVOCATES TO THINK ABOUT
WHAT IS A STANDARD OF PRACTICE
FOR HEALTHCARE TO SUPPORT YOUTH
WITH NEURODEVELOPMENTAL
DISABILITIES.
IT WAS RECENTLY PUBLISHED IN
PEDIATRICS, AND IF YOU GO TO THE
SAFEDBP.ORG WEBSITE, YOU CAN
ACCESS THE CONSENSUS STATEMENT,
A PLAIN LANGUAGE SUMMARY AND AN
EXECUTIVE SUMMARY.
WE ASK FOR YOUR HELP AND PROMOTE
IN SETTINGS THAT ARE APPROPRIATE
FOR YOU TO REALLY SPREAD
EQUITABLE CARE AND ACCESS FOR
HEALTHCARE FOR YOUTH WITH
NEURODEVELOPMENTAL DISABILITIES,
AND YETTA WAS ALSO PART OF THAT
PANEL AS WELL.
YOU CAN FOLLOW HRSA ON SOCIAL
MEDIA, YOU CAN GO TO OUR
WEBSITE, FIND OUT MORE ABOUT OUR
AUTISM PROGRAMS, AND I'M HAPPY
TO SERVE AS A RESOURCE FOR YOU
AT ANY TIME.
THANK YOU.
>> THANK YOU SO MUCH FOR THAT
UPDATE.
NECK WE'LL NEXT WE'LL HEAR FROME
WILLIAMS.
>> HI, EVERYBODY.
NICOLE WILLIAMS.
I AM THE PROGRAM MANAGER FOR THE
DEPARTMENT OF DEFENSE'S AUTISM
RESEARCH PROGRAM WITHIN THE
CONGRESSIONALLY DIRECTED MEDICAL
RESEARCH PROGRAMS OR CDMRP.
BEING IN THE DOD, WE LOVE OUR
ACRONYMS AND VERY LENGTHY TERMS.
FOR THOSE OF YOU WHO ARE NOT
FAMILIAR WITH THE CDMRP, WE'RE A
FUNDING ORGANIZATION.
CURRENTLY WE'RE OVER A
$1 BILLION ENTERPRISE FOR 2024,
WHICH INCLUDES FUNDING 35
DIFFERENT DISEASES AND
DISORDERS, EVERYTHING FROM BR
BREAST CANCER, PROSTATE CANCER,
OBVIOUSLY AUTISM RESEARCH,
EPILEPSY AND DISORDERS
EVERYTHING FROM -- MORE MILITARY
FOCUS, SPINAL CORD INJURY, AND
ALZHEIMER'S, TBI, THINGS OF THAT
SORT.
SO I JUST HAVE A COUPLE OF
SLIDES.
I'M GOING TO GIVE AN OVERVIEW,
HOW WE STARTED AND WHERE WE ARE
AND THEN AN UPDATE ON OUR FY 24
PROGRAM.
SO THE ARP'S VISION IS TO
IMPROVE THE LIVES OF INDIVIDUALS
WITH ASD NOW AND IN THEIR
FUTURE, AND TOWARDS THAT, OUR
MISSION IS TO PROMOTE INNOVATIVE
RESEARCH THAT ADVANCES THE
UNDERSTANDING OF ASD, AND LEADS
TO IMPROVED OUTCOMES FOR SERVICE
MEMBERS, THEIR FAMILIES AND THE
AMERICAN PUBLIC.
YOU CAN SEE HERE FROM THE CHART
AT THE BOTTOM THAT THE PROGRAM
FIRST STARTED IN 2007 WITH A
7 1/2 MILLION DOLLARS
APPROPRIATION, AND WE HAVE
CONTINUALLY RECEIVED FUNDING
SINCE THAT POINT.
THE ONE THING THAT WILL JUMP OUT
AT YOU IS THAT IN FY 20, WE
ACTUALLY SAW A DOUBLING OF OUR
APPROPRIATION TO $15 MILLION,
AND THAT'S WHERE WE'VE BEEN FOR
THE PAST FIVE CYCLES.
SO IN TOTAL, THE PROGRAM HAS
RECEIVED JUST UNDER
$165 MILLION, WHICH IS
TRANSLATED TO 220 AWARDS AND I'M
HAPPY TO SAY THAT ALL OF OUR FY
23 PROJECTS HAVE BEEN FUNDED.
15 OF THOSE ARE ON OUR WEBSITE
THAT YOU CAN SEE HERE AT THE
BOTTOM WITH THE QR CODE.
THE ABSTRACTS ARE THERE, FUNDING
INFORMATION, AS WELL AS THE
INVESTIGATORS AND THEIR
INSTITUTIONS IF YOU WANTED TO
TAKE A LOOK.
SO SEVERAL YEARSING A, WE YEARSY
DEVELOPED A STRATEGIC PLAN TO
BETTER VOCALIZE WHAT THE PROGRAM
WAS MOST INTERESTED IN.
WHERE WE FELT OUR NICHE WAS IN
THE BROADER SCOPE OF AUTISM
RESEARCH.
SO WE DEVELOPED OUR STRATEGIC
PLAN, WHICH COMPRISES OF FOUR
STRATEGIC GOALS WHICH I HAVE
HERE ON THE RIGHT-HAND SIDE.
SO THE PROGRAM IS INTERESTED IN
FUNDING THOSE TREATMENTS AND
INTERVENTIONS FOR AUTISM,
PROJECTS THAT WILL HELP ADDRESS
THE NEEDS OF AUTISTIC
INDIVIDUALS AS THEY MOVE INTO
ADULTHOOD, PROJECTS THAT WILL
SUPPORT THOSE CARING FOR THE
AUTISM COMMUNITY, AND THEN THE
MORE BASIC MECHANISTIC STUDIES
TO HELP US UNDERSTAND THE
CAUSES, MECHANISMS AND SIGNS FOR
ASD.
AGAIN THOSE FOUR STRATEGIC GOALS
ARE REALLY CENTERED AROUND OUR
VISION STATEMENT.
WHAT I SHOW HERE ON THE
SUBBULLETS UNDER THESE FOUR
CATEGORIES ARE WHAT WE CALL OUR
AREAS OF INTEREST.
SO THE SPECIFIC TYPES OF
RESEARCH WE'RE LOOKING FOR EACH
YEAR.
THIS IS NOT AN ALL-ENCOMPASSING
LIST, EACH FUNDING SOLICITATION
NOTES THOSE SPECIFIC AREAS OF
INTEREST BUT I JUST WANTED TO
GIVE EVERYBODY A FEEL FOR THE
TYPES OF AREAS WE ARE MOST
INTERESTED IN.
SO MOVING ON TO OUR FY 24
PROGRAM, I JUST WANTED TO CALL
ATTENTION TO OUR FUNDING
OPPORTUNITIES, AND SOME OF OUR
NEW AREAS OF INTEREST FOR THIS
YEAR.
SO YOU CAN SEE HERE FROM THE
INFOGRAPHIC, THIS PROGRAM HAS
WORKED REALLY DILIGENTLY ON
FUNDING RESEARCH ACROSS THE
CONTINUUM.
SO EVERYTHING FROM THOSE VERY
INITIAL CONCEPTS, THOSE
INNOVATIVE NON-INCREMENTAL
RESEARCH IDEAS WITH NO
PRELIMINARY DATA THROUGH OUR
DISCOVERY AWARD, TO THOSE BIT
MORE MATURE EARLY IDEAS, THROUGH
OUR IDEA AWARD OR IDEA
DEVELOPMENT AWARD, AND THEN
FULL-FLEDGED CLINICAL TRIALS.
SO LOOKING AT THOSE PROJECTS
THAT HAVE THE POTENTIAL FOR
RAPID IMPLEMENTATION FOR THE
TREATMENT AND/OR MANAGEMENT OF
AUTISM.
ALSO OVER THE PAST SEVERAL
YEARS, WE'VE REALLY PUT MORE OF
A FOCUS ON RECRUITING AND
RETAINING THOSE EARLY CAREER
INVESTIGATORS TO GIVE THEM THE
OPPORTUNITY FOR FUNDING TO MAKE
SURE THEY STAY WITHIN THE
RESEARCH FIELD.
AND WE DO THAT REALLY IN TWO
WAYS.
WITH OUR CLINICAL TRIAL AWARD,
WE OFFER AN EARLY CAREER
INVESTIGATOR OPTION WHERE WE
PARTNER THOSE EARLY CAREER
INVESTIGATORS WITH AN
EXPERIENCED INVESTIGATOR TO GIVE
THEM THE TRAINING AND MENTORSHIP
TO BECOME SUCCESSFUL CLINICAL
TRIAL RESEARCHERS AS THEY MATURE
THROUGH THEIR CAREER.
WE ALSO OFFER A CAREER
DEVELOPMENT AWARD THAT'S FOCUSED
ON THOSE EARLY CAREER
INDEPENDENT INVESTIGATORS, AS
WELL AS TRYING TO BRING IN
PERHAPS THOSE ESTABLISHED
INVESTIGATORS FROM ANOTHER
RESEARCH FIELD THAT WANT TO DIVE
INTO AUTISM RESEARCH.
A COUPLE THINGS I WANTED TO
POINT OUT HERE FOR OUR AREAS OF
INTEREST FOR FY 24, THERE ARE
FOUR NEW ONES WE'VE INCLUDED
THIS YEAR.
LOOKING AT THOSE PROJECTS THAT
HAVE THE COMMUNITY SUPPORT AND
PARTICIPATORY RESEARCH
INTERVENTIONS, STUDIES THAT
ADDRESS FACTORS IMPACTING
QUALITY OF LIFE FOR CURRENT AND
FORMER MILITARY FAMILIES.
PROJECTS CENTERED AROUND GENDER
IDENTITY AND SEXUAL HEALTH, AND
THEN FINALLY, PROJECTS LOOKING
TO UNCOVER NEW ADVANCES USING A
STRENGTH-BASED MODEL.
OVER THE PAST COUPLE YEARS, WE
REALLY ARE TRYING TO GET THE
VOICES OF THE AUTISM COMMUNITY
TO BE INVOLVED WITH THE RESEARCH
THAT'S BEING CONDUCTED, SO
ACROSS ALL OF OUR FUNDING
MECHANISMS, WE ENCOURAGE
RESEARCHERS TO INVOLVE AUTISTIC
INDIVIDUALS, FAMILY MEMBERS,
INNER CAREGIVERS IN THEIR
RESEARCH PROJECT TEAMS.
JUST AN ANCILLARY NOTE, OVER THE
PAST COUPLE OF YEARS,
PARTICULARLY WITH THE CAREER
DEVELOPMENT AWARD, WE HAVE BEEN
SEEING AN INCREASE IN THE NUMBER
OF AUTISTIC RESEARCHERS
SUBMITTING TO THE PROGRAM, SO
THAT'S VERY EXCITING AND REALLY
GOOD NEWS TO GET THEIR VOICES
HEARD.
THE LAST THING I WANTED TO POINT
OUT AS FAR AS TIMELINES,
CURRENTLY OUR DISCOVERY AWARD,
AGAIN, THOSE ARE THOSE INITIAL
CONCEPTS, NO PRELIMINARY DATA,
SMALL DOLLAR AMOUNT, YOU KNOW,
TWO YEARS -- TWO-YEAR PERIOD OF
PERFORMANCE.
THE LETTER OF INTENT FOR THOSE
ARE DUE HERE IN A COUPLE WEEKS,
24 JULY, AND THEN FULL
APPLICATIONS WILL BE DUE MID
AUGUST.
AS FAR AS OUR OTHER THREE AWARD
MECHANISMS THAT I HAD MENTIONED,
THE IDEA DEVELOPMENT, CLINICAL
TRIAL AND THE CAREER DEVELOPMENT
AWARD, WE ACTUALLY HAD
PRE-PROPOSAL SUBMISSION AND THAT
DEADLINE HAS PASSED.
BUT THOSE WHO WERE INVITED TO
SUBMIT THOSE FULL APPLICATIONS,
THOSE ARE DUE IN THE MIDDLE OF
AUGUST AS WELL.
SO I JUST WANTED TO PUT A PLUG
IN, IF ANYBODY IS INTERESTED IN
TAKING A LOOK AT THE DISCOVERY
AWARD, IT IS STILL OPEN, SO I
ENCOURAGE EVERYBODY TO TAKE A
LOOK IF YOU'RE INTERESTED.
AND THAT IS ACTUALLY MY LAST
SLIDE.
>> THANK YOU VERY MUCH.
NEXT WE'LL BE HEARING FROM
DR. ALLYSON DEAN, FROM THE
ADMINISTRATION FOR COMMUNITY
AND -- FOR CHILDREN AND
FAMILIES.
>> HI.
DR. ALLYSON DEAN.
I AM THE INCLUSION AND
DISABILITY SERVICES SPECIALIST
FOR THE OFFICE OF HEAD START.
THE OFFICE OF HEAD START FITS
WITHIN THE ADMINISTRATION FOR
CHILDREN AND FAMILIES, WHOSE
MISSION REALLY IS TO SUPPORT THE
ECONOMIC AND SOCIAL WELL-BEING
OF CHILDREN, FAMILIES AND
INDIVIDUALS, SO THERE ARE MANY
PROGRAMS AND INITIATIVES WITHIN
ACF THAT TOUCH THE LIVES OF
INDIVIDUALS WITH AUTISM AND
THEIR FAMILIES, BUT TODAY I'M
GOING TO SPOTLIGHT WORK NEAR AND
DEAR TO MY HEART, WHICH IS EARLY
CHILDHOOD EDUCATION INITIATIVES.
SO WITHIN THIS SPOTLIGHT, I
WOULD SAY THAT OUR EARLY
CHILDHOOD INITIATIVES REALLY
FALL INTO TWO BIG BUCKETS.
THE FIRST IS SUPPORTING EARLY
SCREENING, ASSESSMENT AND
DETECTION OF DISABILITIES,
AUTISM, LEARNING DIFFERENCES, ET
CETERA.
WITH THE INTENT REALLY TO --
THAT THROUGH EARLY DETECTION, WE
CAN MAKE A DIFFERENCE IN
OUTCOMES FOR CHILDREN AND
FAMILIES.
WE DO THAT BY PARTNERING WITH
OTHER GOVERNMENTAL AGENCIES,
INCLUDING THE CDC, OCEP AND
OTHER ORGANIZATIONS COMMITTED TO
THE SAME MISSION.
AND WE DO THAT BY PROMOTING
THEIR MATERIALS TO FAMILIES AND
REALLY TO OUR WORKFORCE.
ONE OF THE THINGS WE RELY ON IS
WITHIN CDC IS THE BIRTH TO
5 WATCH ME THRIVE TRAINING,
WHICH ARE EARLY CARE AND
EDUCATION PROVIDERS THROUGH MANY
VENUES THAT WE PROMOTEMENT
WITHIN DIRECT SERVICE DELIVERY,
WITHIN ACF WE DELIVER DIRECT
SERVICE TO CHILDREN WITH AUTISM
BY INCLUDING THEM IN OUR HEAD
START PROGRAMS, OUR CHILD CARE
PROGRAMS, OUR PUBLIC PRE-K
PROGRAMS, AND WE DO ALL OF THAT
IN PARTNERSHIP WITH OUR IDEA
PARTNERS WHO DELIVER PART B AND
PART C SERVICES LOCALLY.
WE ALSO WORK DIRECTLY WITH THE
DEPARTMENT OF ED TO PROMOTE AND
PUBLISH A JOINT POLICY STATEMENT
THIS YEAR ON INCLUSION TO REALLY
PROMOTE LOCAL PARTNERSHIPS TO
SUPPORT CHILDREN WITH
DISABILITIES, CHILDREN WITH
AUTISM, TO RECEIVE THE EARLY
INTERVENTION AND EARLY CHILDHOOD
SPECIAL EDUCATION SERVICES THAT
THEY ARE ELIGIBLE FOR WITHIN
LEAST RESTRICTIVE ENVIRONMENTS,
WHERE THEY CAN PLAY AND LEARN
AND DEVELOP ALONGSIDE THEIR
TYPICALLY DEVELOPING PEERS.
THE POPULATION OF CHILDREN WITH
DISABILITIES IN OUR EARLY
CHILDHOOD EDUCATION SETTINGS
LAST YEAR WAS ABOUT 13%, AND
WITHIN THAT, 6,800, I BELIEVE,
CHILDREN HAVE A DIAGNOSIS OF
AUTISM.
AUTISM IS OUR FASTEST GROWING
DIAGNOSIS WITHIN OUR EARLY
CHILDHOOD EDUCATION SETTING.
SOME OF THE WAYS THAT WE SUPPORT
THE ADULTS WITHIN OUR WORK SCOPE
ARE, AS I ALREADY SAID, THE CDC
AS PARTICULARLY THE MILESTONE
MARKERS.
WE DEVELOPED A MOBILE APP CALLED
THE INCLUSION LAB WHICH IS A AN
APPLICATION FOR EARLY CHILDHOOD
TEACHERS WHO ARE WORKING WITH
CHILDREN WITH DISABILITY, WHO
CAN REALLY WORK THROUGH A
TEACH-ASSESS-ADJUST CYCLE IN
TERMS OF MAKING SURE THAT CHERN
HAVE THE SUCHILDREN HAVE THE SUY
NEED, THE TAILORED AND
INTENTIONAL SUPPORTS THAT ALLOW
THEM TO BE SUCCESSFUL TO FULLY
PARTICIPATE IN THEIR EARLY
CHILDHOOD LEARNING SETTINGS.
WE ALSO HAVE THE HEAD START
CENTER FOR INCLUSION, WHICH IS
AN ONLINE WEBSITE THAT INCLUDES
MANY RESOURCES TAILORED
SPECIFICALLY TO AUTISM SPECTRUM
DISORDER.
THESE INCLUDE FACT SHEETS,
TRAINING MODULES, AS WELL AS
ACTUAL PRACTICAL SUPPORTS FOR
TEACHERS LIKE CLASSROOM VISUAL
AIDS AND OTHER THINGS THAT CAN
REALLY HELP CHILDREN BE
SUCCESSFUL IN THOSE GROUP
LEARNING SETTINGS.
WE ALSO DO WORK, I WOULD SAY
PRIMARILY THROUGH PUBLIC PRE-K
AND OUR CHILD CARE DEVELOPMENT
BLOCK FUND INITIATIVES WITH
STATES.
WE ISSUE POLICY AND GUIDANCE TO
STATES.
WE ALSO PROVIDE FUNDING FOR
APPROXIMATELY I THINK LAST YEAR
1.4 MILLION CHILDREN TO BE
SERVED THROUGH CHILD CARE
PROGRAMS IN STATES.
AND WITHIN THOSE STATE SYSTEMS,
WE USE MANY LEVERS THROUGH THAT
FUNDING OPPORTUNITY TO SUPPORT
INCLUSION OF CHILDREN WITH
DISABILITIES.
INCLUDING CHILDREN WITH AUTISM
IN PROGRAMS INCLUDING INCREASED
REIMBURSEMENT RATES FOR PROGRAMS
AND OTHER INCENTIVES THAT HELP
PROGRAMS REALLY CREATE INCLUSIVE
SPACES FOR CHILDREN, AND PROVIDE
CARE FOR CHILDREN WHILE FAMILIES
GO TO WORK OR ATTEND TRAINING OR
EDUCATION PROGRAMS.
THIS YEAR IN PARTICULAR, WE
ISSUED POLICY GUIDANCE ON EARLY
CHILDHOOD BEHAVIORAL AND MENTAL
HEALTH SUPPORTS, WHICH REALLY
GIVES STATE GUIDANCE ABOUT HOW
THEY CAN USE THEIR FUNDING TO
INCREASE ACCESS TO BEHAVIORAL
AND MENTAL HEALTH SUPPORTS NOT
ONLY FOR CHILDREN AND FAMI
FAMILIES -- FAMILIES AND
CHILDREN WITH DISABILITIES, BUT
ALSO FOR CAREGIVERS.
AND IN ADDITION TO BEHAVIORAL
HEALTH SUPPORTS IN TERMS OF
HELPING CLASSROOM TEACHERS
UNDERSTAND HOW TO MANAGE
BEHAVIOR FOR CHILDREN WITH
DISABILITIES IN GROUP SETTINGS,
WHETHER THAT'S RELATED TO THEIR
DISABILITY OR NOT.
THOSE SUPPORT ARE PROMOTED, AND
ALSO MENTAL HEALTH FOR STAFF,
FAMILY AND ADULT WELL-BEING.
SO THOSE ARE SOME OF THE
INITIATIVES MOST CLOSELY ALIGNED
TO SUPPORTS FOR INDIVIDUALS WITH
AUTISM.
AND THANKS FOR LETTING ME SHARE
TODAY.
>> THANK YOU VERY MUCH.
NEXT WE'LL BE HEARING FROM
MS. BARBARA ROLAND FROM THE
INDIAN HEALTH SERVICE.
>> GOOD MORNING.
THANK YOU FOR ALLOWING US TO BE
A PART OF THIS PROGRAM.
WE SUPPORT AUTISM SERVICES AND
ARE VERY PROUD OF THE THINGS
THAT WE DO.
THE INDIAN HEALTH SERVICE
PROVIDES CLINICAL ASSESSMENT
SERVICES AND SUPPORT TO AMERICAN
INDIAN/ALASKA NATIVES REGARDING
AUTISM.
THESE SERVICES OFTEN INCLUDE
OTHER DIAGNOSES SUCH AS
DEPRESSION, ANXIETY, AND SUICIDE
AMONG OTHERS.
OUR PATIENTS MAY BE REFERRED TO
OUTSIDE PROVIDERS, AND COSTS MAY
BE COVERED WHEN AVAILABLE.
THE PROVIDER CONSULTATION CLINIC
ALLOWS FEDERAL TRIBAL AND URBAN
PROVIDERS TO SEEK EXPERT
ASSISTANCE IN CLINICAL GUIDANCE
FROM HEALTHCARE PROFESSIONALS.
WE SPECIALIZE IN ASD, FASD AND
NEURODEVELOPMENTAL DISORDERS.
SO YOU CAN ACCESS THE INDIAN
HEALTH SERVICE.GOV INDIAN
CHILDREN'S PROGRAM ON OUR
WEBSITE.
THIS CONSULTATION SERVICE IS
DESIGNED TO SUPPORT HEALTHCARE
STAFF WORKING IN FEDERAL, TRIBAL
AND RURAL FACILITIES AGES
1 THROUGH 23, PRIMARY HEALTH
PROVIDERS, BEHAVIORAL PROVIDERS
AND OTHER HEALTHCARE STAFF.
CONSUL TAIGS CAN HELP PROVIDE
BEHAVIORAL HEALTH INTERVENTION
RECOMMENDATIONS AND
RECOMMENDATIONS FOR SUPPORT AND
RESOURCES.
THE CENTER PROVIDES SUPPORT TO
PROVIDERS AND NEURODIVERSE
PUBLIC.
THE IHS PARTNERS WITH THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE -- CONCERNING AUTISM
SPECTRUM DISORDER, WHICH YOU ALL
KNOW.
THE IACC -- TO ENSURE THAT A
WIDE RANGE OF IDEAS AND
PERSPECTIVES ARE REPRESENTED AND
DISCUSSED IN A PUBLIC FORUM.
THE IACC MISSION, WHICH I'M SURE
YOU ALL KNOW AS WELL, PROVIDES
ADVICE TO THE SECRETARY OF
HEALTH HEALTH AND HUMAN SERVICES
RELATED TO AUTISM SPECTRUM
DISORDER.
ALSO TO FACILITATE THE EXCHANGE
OF INFORMATION ON AND
COORDINATION OF ASD ACTIVITIES
AMONG AGENCIES AND
ORGANIZATIONS, AND TO INCREASE
PUBLIC UNDERSTANDING OF THESE
AGENCIES' ACTIVITIES, POLICIES
AND RESEARCH BY PROVIDING -- THE
MISSION OF IHS TELEBEHAVIORAL
HEALTH CENTER OF EXCELLENCE
INDIAN CHILDREN'S PROGRAM IS TO
EQUIP HEALTHCARE PROVIDERS WITH
TRAINING AND EDUCATION TO
PROVIDE EXCELLENT CARE FOR
AUTISM SPECTRUM DISORDER, FETAL
ALCOHOL SPECTRUM DISORDER AND
OTHER NEURODEVELOPMENTAL
DISORDERS.
IHS PROVIDES AUTISM-RELATED
WEBINARS THROUGH TBHCE.
HERE'S A LIST OF TOPICS THAT
HAVE BEEN PROVIDED THIS YEAR.
UNFORTUNATELY ALL OF THE
WEBINARS HAVE BEEN PRESENTED.
HOWEVER, THERE IS A PLACE THAT
YOU CAN GO TO THE IHS
TELEBEHAVIORAL HEALTH WEBSITE
THAT'S ON THE SCREEN, AND YOU
CAN LOOK AT THE ARCHIVED
PRESENTATIONS TH BACK FOR MANY,
MANY YEARS.
AND WE WILL WAIT ON QUESTIONS
UNTIL THE WHOLE PANEL DISCUSSES
THEM.
SO THAT'S IT FOR IHS.
THANK YOU VERY MUCH.
>> THANK YOU.
NEXT WE'RE GOING TO HEAR FROM
DR. MAXINE KELLMAN.
>> HELLO, EVERYONE.
I AM DR. MAXINE KELLMAN, SENIOR
PUBLIC HEALTH ANALYST, AND A
DESIGNATED FEDERAL OFFICER FOR
THE NATIONAL ADVISORY COMMITTEE
ON SENIORS AND DISASTERS.
I AM IN THE ADMINISTRATION FOR
STRATEGIC PREPAREDNESS AND
RESPONSE.
WE RECENTLY WENT FROM A STAFF
DIV TO OP DIV SO THAT'S OUR NEW
NAME BUT WE STILL GO BY ASPR.
TODAY I'LL GIVE A BRIEF OVERVIEW
OF ASPR'S ADVISORY COMMITTEES ON
OLDER ADULTS AND PEOPLE WITH
DISABILITIES.
NOW ASPR'S MISSION IN A NUTSHELL
IS TO SAVE LIVES, AND PROTECT
THE NATION FROM HEALTH SECURITY
THREATS.
FOR TODAY'S AGENDA, WE'LL GO
THROUGH LEGISLATION,
REGULATIONS, AND MEMBERSHIP.
THE NATIONAL -- FOR THE NATIONAL
ADVISORY COMMITTEE ON SENIORS
AND DISASTERS OR NACSD GOING
FORWARD, AND THE NATIONAL
ADVISORY COMMITTEE ON
INDIVIDUALS WITH DISABILITIES
AND DISASTERS, NACIDD.
GOING
FORWARD.
AND ALSO GIVE AN OVERVIEW OF THE
RECOMMENDATIONS.
AS FOR THE LEGISLATION AND
REGULATIONS, THESE COMMITTEES
FALL UNDER THE AUTHORITIES OF
THE PANDEMIC AND ALL-HAZARDS
PREPAREDNESS AND ADVANCING
INNOVATIONS ACT, OR PAHPAIA.
THAT WAS CREATED IN 2019.
AND ALSO FEDERAL ADVISORY
COMMITTEE ACT OF FACA.
FOR THE COMMITTEE PURPOSE, THE
NACSD ADVISES AND PROVIDES
RECOMMENDATIONS TO BOTH THE HHS
SECRETARY AND THE ASPR AS IT
RELATES TO UNIQUE NEEDS OF OLDER
ADULTS, WHEREAS NACIDD FOCUSES
ON PEOPLE WITH DISABILITIES AND
BOTH ARE IMPORTANT FOR
PREPARATION FOR RESPONSE AND
RECOVERY DURING DISASTERS.
BOTH FALL UNDER THE GENERAL
SERVICES ADMINISTRATIONS AND
REQUIREMENTS VIA FACA.
IN TERMS OF MEMBERSHIP, BOTH
COMMITTEES HAVE SEVEN
NON-FEDERAL VOTING MEMBERS.
THEY SERVE THREE-YEAR TERM AND
PROVIDE RECOMMENDATIONS TO THE
SECOSECRETARY AND ASPR.
BOTH COMMITTEES HAVE 10
EX-OFFICIO MEMBERS FROM VARIOUS
AGENCIES INCLUDING THE V.A. AND
ACL.
FOR THE SENIORS COMMITTEES, AT
LEAST TWO HEALTH PROFESSIONALS
WITH EXPERTISE IN GERONTOLOGY
AND GERIATRIC DISASTER PLANNING
ARE REQUIRED.
FOR THE INDIVIDUALS
WITH DISABILITIES COMMITTEE, AT
LEAST TWO HEALTH PROFESSIONALS
WITH EXPERIENCE IN DISABILITY
AND ACCESSIBILITY CARE IN
DISASTERS, AS WELL AS TWO PEOPLE
WHO ACTUALLY WITH DISABILITY AND
ALSO HAVE DISASTER MANAGEMENT
EXPERTISE.
FOR THE NACSD AND NACIDD
RECOMMENDATIONS, THE COMMITTEES
OFFER RECOMMENDATIONS TO ASSIST
THE SECRETARY IN BEST SERVING
OLDER ADULTS AND PEOPLE WITH
DISABILITIES BEFORE, DURING AND
AFTER DISASTER EVENTS.
RECOMMENDATIONS FOCUS ON COMMUTE
READINESS, INFRASTRUCTURE, AND
BEHAVIORAL HEALTH.
FOR TH THE NACSD, THE FIRST SETF
RECOMMENDATIONS COMPLETED IN MAE
DISSEMINATION OF EMERGENCY
PREPAREDNESS AND MITIGATION
INFORMATION BY MAKING IT MORE
ACCESSIBLE AND USER-FRIENDLY,
AND ALSO THE ESTABLISHMENT OF
DISASTER CARE CENTERS FOR OLDER
ADULTS.
THE NACSD COMPLETED ANOTHER SET
OF RECOMMENDATIONS IN 2023,
SEPTEMBER, ADVISING THAT HHS
SHOULD SEEK FUNDING THROUGH THE
OLDER AMERICANS ACT TITLE V II
FOR AN OFFICE OF STATE LONG-TERM
CARE OMBUDSMAN PROGRAM.
THIS PROGRAM WILL DEVELOP AN
EMERGENCY PREPAREDNESS TRAINING
CURRICULUM, PROVIDE SUPPORT
THROUGH GRANTS, AS WELL AS
ENCOURAGE REGULARLY SCHEDULED
PREPARATION MEETINGS AND DRILLS
RELATED TO LO LONG-TERM CARE
ADVOCACY.
HERE ARE ADDITIONAL
RECOMMENDATIONS RELATED TO
LONG-TERM CARE.
GIVE ME A SECOND TO QUICKLY
REVIEW.
AND HERE ARE ADDITIONAL
RECOMMENDATIONS, BUT WE
DEFINITELY ENCOURAGE YOU TO
VISIT OUR NACSD.GOV WEBPAGE TO
REVIEW THE RECOMMENDATIONS IN
DETAIL.
AS FOR THE NACIDD, THE
RECOMMENDATIONS INCLUDED THE
TIMELY DEVELOPMENT AND
DISTRIBUTION OF VIDEOS, PRESS
RELEASES, PRESS CONFERENCES, AND
ALL OTHER COMMUNICATIONS IN
AMERICAN SIGN LANGUAGE AND
REGIONAL OR LOCALLY USED SIGN
LANGUAGES APPROPRIATE FOR THE
POPULATIONS AFFECTED BY A PUBLIC
HEALTH EMERGENCY.
AS WELL AS JUST IN TIME TRAINING
FOR ALL PUBLIC HEALTH EMERGENCY
RESPONDERS.
AS STATED BEFORE, YOU CAN SEE
MORE DETAILS AND RECOMMENDATIONS
FOR THE NACIDD AT ITS WEBSITE,
THE NACIDD.GOV PUBLIC WEBSITE.
AND ANY QUESTIONS, WE HAVE A
RESOURCE MAILBOX FOR THE NACSD,
IT'S NACSD@HHS.GOV, AND NACIDD,
IT IS THE NACIDD@HHS.GOV.
THANK YOU.
>> THANK YOU SO MUCH.
AND OUR LAST PRESENTATION IN
THIS GROUP OF FIWA PRESENTATIONS
WILL BE BY DR. SHERMAN GILLUMS
FROM FEMA.
>> GOOD MORNING, EVERYONE.
I JUST WANT TO MAKE SURE YOU ALL
CAN HEAR ME?
>> YES, WE CAN HEAR YOU.
>> THUMBS UP?
THANK YOU.
WELL, HI, I AM THE FEMA
DISABILITY COORDINATOR.
I'M ALSO -- THE OFFICE OF
DISABILITY INTEGRATION AND
COORDINATION.
THESE TWO TITLES EMBODY TWO
APPROACHES TO DISABILITY
INTEGRATION THAT -- SINCE 2005,
WHICH
THAT'S FINE FOR YOU TO TURN OFF
YOUR I HAVE YOE IF YOU THINK
-- TURN OFF YOURVIDEO IF YOU TL
MAKE THINGS COME THROUGH A
LITTLE BIT BETTER.
I BELIEVE YOU MIGHT BE LOGGING
BACK IN.
THERE YOU ARE.
>> SOUND CHECK -- CONNECTED?
>> YES, WE'RE CONNECTED BUT YOUR
CONNECTION IS A LITTLE BIT
SHAKY.
IT IS CUTTING IN AND OUT A
LITTLE BIT.
IF YOU MIGHT ABLE TO MOVE A
LITTLE BIT TO GET BETTER
RECEPTION.
>> SURE.
I'LL TURN MY VIDEO OFF AND MAYBE
THAT HELPS.
HOW'S THAT?
>> I THINK I CAN HEAR YOU
BETTER.
GO AHEAD AND WE'LL SEE --
>> I'LL CONTINUE BUT LET ME KNOW
IF YOU -- OKAY.
AS I WAS SAYING, THE AGENCY TOOK
A NEW --
>> WE CAN'T HEAR YOU NOW.
YES, TECHNOLOGY SOMETIMES
DOESN'T COOPERATE.
>> APOLOGIES.
I'M ACTUALLY OFF SITE,
DEPLOYMENT TO TEXAS.
BUT I'M -- [INAUDIBLE]
PRESENTATION HERE.
>> THANK YOU --
[PLEASE STAND BY]
>> AM I BACK?
>> CAN YOU TRY DIALING IN TO
ZOOM?
SO AS DR. GILLUMS SAID, HE'S
DEPLOYED TO TEXAS ASSISTING WITH
A DISASTER, AND WE REALLY
APPRECIATE HIM TAKING A MOMENT
TO TRY TO UPDATE OUR COMMITTEE
BUT WE'RE HAVING A FEW TECHNICAL
PROBLEMS.
IN THE MEANTIME, I SEE THERE'S A
QUESTION FROM PAUL WANG UNTIL WE
GET DR. GILLUMS BACK.
GO AHEAD, PAUL.
>> THANK YOU.
JUST TWO QUICK FOLLOW-UPS TO
LAURA RASKIN RAMOS' PRESENTATION
FROM HRSA.
FIRST I WANT TO SELF-IDENTIFY AS
A LAND ALUM ALONG WITH MANY
OTHER PEOPLE ON THE COMMITTEE.
VERY PROUD TO BE ABLE TO SAY
THAT.
THE INTERDISCIPLINARY NATURE OF
LEND TRAINING IS REALLY, REALLY
IMPORTANT AND HAS IMPORTANT
IMPACTS, I THINK.
SECONDLY I JUST WANT TO SAY THE
SAFE INITIATIVE THAT SHE
HIGHLIGHTED, I THINK IT'S VERY
IMPORTANT AND IT WAS ACTUALLY
NOT ONLY YETTA BUT ALSO MO --
AND MATT SIEGEL WHO PARTICIPATED
IN THAT EFFORT.
WHEN THIS COMMITTEE CONVENES
AGAIN, I THINK IT WOULD BE A
GREAT THING TO HIGHLIGHT IN MORE
DETAIL.
>> GREAT SUGGESTION AND
OPPORTUNITY.
SHERMAN, ARE YOU BACK WITH US?
>> I AM.
CAN YOU HEAR ME?
>> YES.
>> MY APOLOGIES.
I'LL TRY TO SPEED US UP AND GET
BACK ON TRACK HERE.
>> NO PROBLEM.
>> THE TWO-PRONGED APPROACH WAS
TO HAVE A PERSON WHO WAS GOING
TO BE CLOSE ENOUGH TO THE
ADMINISTRATOR TO MAKE SURE WE
ACCOMMODATE THE NEEDS OF PEOPLE
WITH DISABILITIES.
DURING THE PREPAREDNESS PHASE,
THE PLANNING PHASE OF EMERGENCY
MANAGEMENT BUT THE DIRECTOR PART
IS REALLY -- AND IT WASN'T CON
10 PLATE IN THE LAW BUT THIS
BECAME THE EMBODIMENT OF WHAT WE
ACTUALLY DO IN THE FIELD WHICH
WILL PROBABLY BE OF GREATER
INTEREST TO THIS INTERAGENCY
COORDINATING COMMITTEE.
AND YOU SHOULD SEE A SLIDE THAT
SAYS GUIDING POLICIES AND
MISSION TENETS.
WHEN I ASSUMED THE HELM BACK IN
AUGUST OF 2022, TWO YEARS AGO
ALMOST TO THE MONTH, THE FIRST
POINT OF NOTE WAS THAT WE HAVE A
STRATEGIC PLAN THAT WAS CRAFTED
AND IMPLEMENTED IN 2022 TO 2026
THAT HEAVILY CONSIDERED
STAKEHOLDER FEEDBACK.
THERE WAS A LOT OF FEEDBACK
ABOUT WHERE THE GAPS WERE, WHERE
NEEDS WEREN'T BEING MET AND
WE'RE TALKING ABOUT BEFORE,
DURING AND AFTER DISASTERS.
A LOT OF TIMES PEOPLE SEE FEMA
AS A RESPONSE ENTITY, BUT WE
ALSO DO A LOT OF PLANNING BEFORE
AND DURING THE DISASTER TO
ENSURE THAT WE MITIGATE RISKS AS
DISASTERS ARE UNFOLDING AND
THAT'S PRETTY IMPORTANT WHEN YOU
THINK ABOUT THE WAYS THAT
FAMILIES WHO HAVE A PERSON WITH
AUTISM OR AN INDIVIDUAL IS
IMPACTED NOT JUST IN DAILY LIFE
BUT DURING MOMENTS OF CRISES,
WHERE A LOT OF CONFUSION SETS IN
FOR A LOT OF PEOPLE.
AND THEN AGAIN, I AS A
DISABILITY COORDINATOR, MY ROLE
IS ESTABLISHED POST KATRINA,
EMERGENCY MANAGEMENT FORMAT
AFTER MANY PEOPLE WITH
DISABILITIES OR WHO ARE OLDER
DIED IN THAT DISASTER, I THINK
ABOUT 80%.
SO THE CHANCES OF DYING IN A
DISASTER NOT ONLY HURRICANE
KATRINA BUT OTHER DISASTERS.
SO THIS WAS THE ANSWER TO THAT
PROBLEM.
THEN OF COURSE MY OFFICE WAS
ESTABLISHED LATER ON.
BUT EXECUTIVE ORDER 13985 REALLY
GAVE US A DIRECTION, A MANDATE
TO NOT JUST LOOK AT EQUITY AS A
MISSION ESSENTIAL BUT HOW WE
MEASURE IT AND HOW WE ACTUALLY
GIVE EMBODIMENT TO WHAT IT MEANS
TO BE EQUITABLE IN DISASTER
RESPONSE.
THE NEXT SLIDE WILL PROVIDE A
FRAMEWORK FOR HOW WE DID THAT
DURING OUR TIME HERE.
AND ON THE NEXT SLIDE IT'S JUST
14 POINTS OF INEQUITY IN A
DISASTER CYCLE.
I SPENT THE FIRST MAYBE YEAR AND
A HALF NOT JUST GOING TO
DISASTERS BUT TALKING TO
SURVIVORS AND STAKEHOLDERS ABOUT
WHERE THE COMMON THREADS WERE,
WHERE THE THREAD WAS THROUGH
DISASTERS THAT ARE HIGHLY
VARIABLE.
A LOT OF VARIABLES DISTINGUISH
ONE DISASTER FROM ANOTHER.
BUT WHAT WERE THE THINGS THAT
KEPT HAPPENING OVER AND OVER AND
OVER AGAIN TO PEOPLE WITH
DISABILITIES OR HOW ARE THEY
IMPACTED DURING WHAT WE CALL THE
SURVIVOR JOURNEY?
AND I CAME UP WITH THESE 14
POINTS WHERE IF WE COULD DO A
BETTER JOB OF ANTICIPATING THAT
THIS IS WHERE THE PROBLEMS WILL
SURFACE, THEN WE COULD DO A
BETTER JOB OF ASSESSING THE RISK
AND USING DATA THAT TELLS US HOW
MANY PEOPLE ARE IN A GIVEN AREA,
WHAT TYPES OF DISABILITIES THEY
HAVE, HOW THOSE THINGS FACTOR
AGAINST THE WAYS IN WHICH
INEQUITY TENDS TO COME TO THE
SURFACE IN DISASTERS.
AND THE FIRST ONE IS REALLY
PROBABLY THE EASIEST TO FIX BUT
HARDEST TO IMPLEMENT BECAUSE IT
RELIES ON STATES AND COUNTIES
AND LOCALITIES PRIOR TO
DISASTERS INCLUDING PEOPLE WITH
DISABILITIES IN THE PLANNING
PROCESS.
I SPENT A GREAT DEAL OF TIME
LAST YEAR WORKING WITH NACDD AND
OTHER -- THE DV COUNCILS AT THE
STATE LEVEL TALKING THROUGH WAYS
WHICH THEY BECOME PART OF THE
DISASTER PLANNING PROCESS, AND
IF THEY'RE NOT INVITED, HOW DO
THEY FIND A SEAT AT THE TABLE,
WHETHER IT'S THROUGH IMPOSITION
OR JUST TALKING TO THE RIGHT
PEOPLE, BUT THEY HAVE TO HAVE A
SEAT AT THE TABLE TO TALK
THROUGH THESE ISSUES THAT ARE
GOING TO COME UP DURING
DISASTERS.
AGAIN, WE'RE SEEING THAT RIGHT
NOW IN TEXAS AND OTHER PLACES
WHERE WE HAD A TORNADO OUTBREAK
THROUGHOUT THE MIDWEST AND THE
WEST, WHERE PEOPLE ARE IMPACTED.
AND THEY OUGHT TO HAVE A SAY ON
WHAT THEIR NEEDS ARE PRIOR TO
THOSE MOMENTS WHEN A LOT OF
THINGS ARE THROWN INTO CHAOS.
AND IF YOU FOLLOW THE PRINCIPLES
POINTS OFINEQUITY, ARE WE CONSIG
CAREGIVERS IN THAT PROCESS,
EVACUATION AND TRANSPORTATION,
SHELTERING, AND I'LL TALK A
LITTLE BIT ABOUT SOME OF THE
PRACTICAL WAYS THAT I'VE
ENCOUNTERED THESE PROBLEMS, BUT
SHELTERING, TRANSPORTATION,
ESTABLISHING HOW WE COMMUNICATE
WITH PEOPLE AND WAYS THEY CAN
TELL US WHAT THEY NEED.
SO ALL THESE WAYS ARE WAYS MY
TEAM BEGINS THE PLANNING
PROCESS, EITHER PREVIOUS TO
LANDFALL IF IT'S A HURRICANE, OR
IF THERE IS A NO-NOTICE
DISASTER, WHEN IT HAPPENS, WE
IMMEDIATELY BEGIN TO LOOK AT
THESE 14 AREAS OF INEQUITY, AND
THIS IS WHERE, WHEN I TALKED TO
DV COUNCILS AND OTHER ENTITIES
THAT DO THE WORK THAT THIS
INTERAGENCY COUNCIL FOCUSES ON,
THIS IS WHERE WE TRY TO EDUCATE
FOLKS ON HOW TO LOOK AT THIS IN
A WAY THAT ALLOWS THEM TO BE
PROACTIVE AND SELF SUFFICIENT IN
MANY WAYS WHEN WE CONTEMPLATE
HOW BEST TO DO THESE ACTIVITIES.
IT ALWAYS HELPS WHEN I TALK
ABOUT WHAT WE DO TO REALLY GET
INTO THE HUMAN DIMENSIONS OF
DISASTERS, AND IN THIS CASE
WE'RE TALKING ABOUT AUTISM.
THAT PHOTO SHOWS ME AT SANIBEL
ISLAND AFTER THE HURRICANE,
HURRICANE IAN WHICH WAS ONE OF
THE COSTLIEST IN HISTORY HIT
THAT AREA AND KILLED QUITE A FEW
PEOPLE.
AND I'M ALWAYS LOOKING FOR
EVIDENCE OF A FAMILY, OF WHO WAS
IMPACTED, WHO ARE THE FACES THAT
OFTEN BECOME REMOVED AND
ANONYMIZED BY DISASTERS WHEN
THEY'RE LUP P LUMPED IN WITH A
SURVIVOR GROUP.
BUT THESE ARE REAL CONSEQUENCES
AND I CITE THREE THAT WERE WITH
ME DURING HURRICANE IAN.
THE FIRST WAS A CALL I RECEIVED
FROM A MOM WHO HAD TWO SONS WHO
HAVE AUTISM, THEY WERE SHELTERED
IN HER CAR BECAUSE SHE DIDN'T
WANT TO BE IN THAT CONJUGATE
SHELTER SITUATION WHERE PEOPLE
MIGHT MISUNDERSTAND ANY
BEHAVIORS OR ANY WAYS THAT HER
SONS MIGHT REACT TO BEING PUT IN
THAT SITUATION.
AND THEN BEING ADULTS, YOU KNOW,
AT THE SAME TIME.
SO I CITE THAT BECAUSE THAT WAS
ONE INSTANCE WHERE WE SHOW HOW
FAMILIES HAVE TO OFTENTIMES GO
BEYOND SIMPLY ADAPTING AS
SURVIVORS BUT ALSO ADAPT TO
SOCIAL ATTITUDES EVEN IN THE
MIDST OF A DISASTER, AND WE SEEK
TO STOP THAT OR DISRUPT THAT BY
GETTING AHEAD OF THESE BEHAVIORS
BEFORE DISASTERS HAPPEN.
ANOTHER STORY WAS A 6-YEAR-OLD
BOY WHO DROWNED, HIS BROTHER
ALSO DROWNED IN AN ATTEMPT TO
SAVE HIM AFTER HE WANDERED OFF
DURING OR IN THE IMMEDIATE
AFTERMATH OF HURRICANE IAN.
I TELL THAT STORY BECAUSE, ONE,
IT EDUCATES FIRST RESPONDERS ON
THE NEED TO UNDERSTAND AUTISM,
AND SOME OF THE COMMONALITIES
INCLUDE AN ATTRACTION TO WATER
AND THE TENDENCY TO WANDER OFF.
AND WE HAVE TO THINK ABOUT THAT
WHEN WE PUT FAMILIES IN SHELTERS
AND SETTINGS WHERE WE EXPECT
THEM TO BE SAFE IN THE
TRADITIONAL SENSE BUT WE ALSO
HAVE TO THINK ABOUT AREAS WHERE
THERE MIGHT BE BODIES OF WATER
OR WHERE YOU MIGHT BE -- ENABLE
FAMILIES TO PREVENT WANDERING IN
A SITUATION WHERE THERE ARE A
LOT OF PEOPLE HOUSED IN ONE
AREA.
AND THEN THE LAST ONE WAS AN
INSPIRATIONAL STORY.
THIS WAS A 7-YEAR-OLD BOY WHOSE
MOM TALKED ABOUT THE WAY HE PUT
ON A MASK, THE INK MACHINE
CHARACTER.
HE PUT ON A MASK DURING THE
HURRICANE AN BECAUSE OF THAT, HE
WAS ABLE TO TAKE AND REMOVE
HIMSELF FROM THE DANGER AND
UNCERTAINTY BY FEELING LIKE THE
CHARACTER, THE BENDY CHARACTER.
AND I THOUGHT THAT WAS
INTERESTING, BECAUSE AGAIN, IT
HELPS US BETTER UNDERSTAND WAYS
IN WHICH WE CAN SUPPORT FAMILIES
IN THIS CASE THAT WAS UNIQUE TO
THAT FAMILY, BUT KNOWING AND
UNDERSTANDING THAT THERE ARE
WAYS WE CAN HELP KIDS GET
THROUGH THE UNCERTAINTY OF
DISASTERS IS HELPFUL FOR US, AS
FIRST RESPONDERS.
SO I JUST WANTED TO POINT THOSE
OUT BECAUSE WE'RE ALWAYS HAVING
TO REMIND PEOPLE THAT THESE ARE
NOT STATISTICS OR DATA POINTS,
THESE ARE HUMAN BEINGS.
THERE ARE WAYS WE NEED TO
SUPPORT THEM.
AND THEN THE LAST SLIDE.
THE LAST SLIDE SHOWS THE ACTUAL
EFFORTS WE'VE UNDERTAKEN.
THERE WAS A COLLABORATION
BETWEEN THE DISABILITY
INTEGRATION WORKFORCE IN FEMA
AND THE AUTISM COMMUNITY IN
GUAM, WHERE THEY WERE ABLE TO
COLLABORATE ON MESSAGING AND
MAKING SURE THAT FAMILIES HAD
THE MESSAGING AND THE
INSTRUCTION ON HOW TO GET
SUPPORT EVEN IF POWER OUTAGES
WERE HAPPENING.
THESE WERE RADIO MESSAGES.
WE ALSO RELEASED IS368A.
THIS IS FREE OF CHARGE TRAINING
THAT ANYONE CAN TAKE.
YOU SIMPLY HAVE TO HAVE AN EMAIL
ADDRESS AND REGISTER ON THE FEMA
EMA WEBSITE AND TAKE THIS
TRAINING.
WE PROVIDE YOU WITH A LINK TO
THAT OR YOU CAN GOOGLE THE TITLE
THERE WILL POP UP, BUT THAT'S
THE WAY FOR US TO CREATE A
COMMON LANGUAGE AROUND HOW WE
ASSIST PEOPLE WITH DISABILITIES
IN DISASTERS.
THEN I'M GOING TO BE SPEAKING AT
THE NACBD CONFERENCE THIS WE'RE
IN D.C. .
I SPOKE LAST YEAR AT THE
CONFERENCE BUT A LOT OF THIS IS
AROUND HOW WE BRAINSTORM OR
CO-CREATE WAYS THAT WE COME UP
WITH SOLUTIONS TO HELPING
FAMILIES WHO HAVE A LOVED ONE
WITH AUTISM, HELPING CAREGIVERS
WHO PROVIDE CARE FOR THEM, COPE
WITH THE UNCERTAINTY THAT
DISASTERS OFTEN IMPOSE UPON.
WITBUT THESE ARE PROACTIVE WAYSE
SEEK TO BE PART OF THE
CONVERSATION WITHOUT OVERTAKING
THE CONVERSATION.
WHAT I MEAN BY THAT IS WE HAVE
TO ENABLE FAMILIES AND
STAKEHOLDERS AND ADVOCATES TO
LEAD THOSE CONVERSATIONS.
MY OFFICE HAS BEEN GOOD ABOUT
MAKING SURE THAT WE UPHOLD
CO-CREATION OF SOLUTION-MAKING
AND GENERATION SOLUTIONS AS A
COMPONENT OF HOW WE SUPPORT THE
AUTISM COMMUNITY.
I STOP THERE, I REALIZE I'VE
TAKEN A LOT OF TIME WITH THE
TECH DIFFICULTIES, BUT IF THERE
ARE ANY QUESTIONS, I'LL BE HAPPY
TO ANSWER THEM.
>> THANK YOU SO MUCH, DR. GILL
DR. GILLUMS.
DR. GILLUMS ALSO WANT TO SAY
CONGRATULATIONS AGAIN ON
RECEIVING THE 2024 PRESIDENTIAL
LIFETIME ACHIEVEMENT AWARD FROM
PRESIDENT BIDEN FOR YOUR
SERVICE.
AND WE LOOK FORWARD TO HAVING
MORE PARTICIPATION FROM ASPR AND
FEMA IN FUTURE IACC AND I'M SURE
WE'LL BE DOING A SESSION ON
EMERGENCY PREPAREDNESS AND
RESPONSE IN THE FUTURE AND
PERHAPS EXPLORING THAT IN THE
STRATEGIC PLAN.
>> THANK YOU SO MUCH.
>> YOU'RE WELCOME.
THANK YOU EACH FOR SHARING YOUR
RECENT INITIATIVES AND PROGRAMS.
AS YOU ALL HEARD, MANY OF THESE
INITIATIVES AND PROGRAMS
DIRECTLY RELATE TO ISSUES THAT
WE'VE COVERED IN OUR STRATEGIC
PLAN, INCLUDING THE CAREGIVING
TOPIC WE'RE GOING TO BE TALKING
ABOUT TODAY.
SO WE'RE EXCITED TO SEE THE
EVOLUTION OF EACH OF THESE
PROGRAMS AND APPRECIATE YOUR
PARTICIPATION ON THE IACC, WHICH
HAS BEEN HELPFUL IN ALL OF THIS
COORDINATION.
SO WE HAVE A COUPLE OF MINUTES
FOR SOME QUESTIONS IF YOU HAVE
ANY, AND THEN I'LL TRY TO
TRANSITION US TO OUR BREAK SO
THAT WE CAN ALL TAKE A BREAK.
YETTA.
>> DR. GILLUMS IF YOU'RE STILL
ON.
THANK YOU ALL FOR YOUR
PRESENTATIONS.
I THINK IT'S SO IMPORTANT FOR US
TO UNDERSTAND WHAT'S HAPPENING
ACROSS ALL THESE AGENCIES.
DR. GILLUMS, IF YOU'RE STILL ON,
WANTED TO KNOW MORE ABOUT THE
WORK THAT YOU DID WITH THE
PARENTS AND CAREGIVERS IN GUAM
AND HOW THAT CAME ABOUT, AND HOW
CAN THIS BE HAPPENING ACROSS THE
NATION?
>> THANK YOU.
I WANT TO MAKE SURE YOU CAN HEAR
ME.
CAN YOU HEAR ME OKAY?
>> YES, I CAN.
>> I'LL TELL YOU, IT CAME ABOUT
PRETTY ORGANICALLY.
WHAT HAPPENED DURING THE MAUI
DISASTER, AND A GOOD THING ABOUT
THESE -- THERE'S NOTHING GREAT
ABOUT THEM, BUT THE GOOD THING
ABOUT PRE-NOTICE OR PRE-LANDFALL
DISASTERS IS WE HAVE A LOT OF
TIME TO PLAN, AND BECAUSE I HAVE
BEEN ENGAGING IN NACDD THAT
SUMMER, IT WAS ALREADY TOP OF
MIND FOR ME.
AND I BEGAN TO ASK THE QUESTION
EARLY ABOUT WHAT ADVOCATES ARE
ACTIVE ON THE GROUND, AND AUTISM
SPEAKS CAME UP.
SO I DIRECTED MY STAFF, WHO WAS
IN HONOLULU AT THE TIME WAITING
FOR THE HURRICANE TO PASS, WE
IMMEDIATELY BEGAN TO CONNECT
WITH THOSE FOLKS THROUGH THE RED
CROSS BECAUSE THEY WERE ALREADY
THERE, AND FIGURE OUT DURING THE
POWER OUTAGE, SPECIFICALLY WHAT
CAN WE DO TO MAKE SURE THAT
THOSE FAMILIES ARE GIVEN
DIRECTIONS NOT JUST ON WHERE THE
SHELTERS ARE, BUT WHAT TO EXPECT
AT THE SHELTERS.
AND SO WE UNDERTOOK A RADIO
CAMPAIGN, WE FIGURED THE RADIO
WAS THE MOST RELIABLE MEANS OF
GETTING IT OUT BECAUSE INTERNET
COMMUNICATION WASN'T GOING TO BE
RELIABLE.
BUT WE ALSO DEPARTMENT WANT TO
SIMPLY CREATE MESSAGING AND
IMPOSE THAT.
WE WANTED TO HAVE SOME SUBJECT
MATTER EXPERTISE WEIGH IN ON THE
BEST WAY NOT JUST BECAUSE OF THE
UNIQUE NEEDS OF PEOPLE WITH
AUTISM, BUT ALSO BECAUSE THERE
WERE LANGUAGE CONCERNS.
THERE WERE OTHER LANGUAGE AND
CULTURAL CONCERNS.
SO WE WANTED TO GET THAT RIGHT.
SO THERE WAS AN ORGANIC
CONVERSATION ON WHAT THAT LOOKS
LIKE SPECIFICALLY FOR FAMILIES
WITH AUTISM BECAUSE THE
ADVOCATES WERE ACTIVE THERE.
AND BECAUSE THEY WERE ACTIVE, WE
FOUND THEM TO BE A COMMUNICATION
CHANNEL THAT WE COULD EXPLOIT
FOR THE GOOD OF SURVIVORS WHO
PRESENTED CHALLENGES THAT WERE
UNIQUE TO AUTISM.
SO THE AVAILABILITY OF PEOPLE
WHO WERE WILLING TO DO THAT WORK
ON THE OTHER SIDE MADE IT EASY.
DOES THAT ANSWER YOUR QUESTION?
>> YES.
THANK YOU.
>> AND WE HAVE A QUESTION FROM
DENA GASSNER AND THEN JENNY MAY
PHAN AND THEN WE'LL WRAP UP.
>> HI, EVERYBODY.
THANK YOU SO MUCH FOR BEING
HERE.
I HAVE A SMALL CONCERN AND I
WILL BE FRANK WITH YOU, I'M
DISSER TATING SO I'M POPPING IN
AND OUT AND IF I MISS SOMETHING,
I'M OPEN TO THAT FEEDBACK.
I HEAR A LOT OF CONVERSATIONS
ABOUT FAMILIES WHO HAVE KIDS
WITH AUTISM.
I DIDN'T HEAR NEARLY ENOUGH
ABOUT SUPPORTS AND ENGAGEMENT IN
CO-CREATION WITH AUTISTIC ADU
ADULTS.
IACC IS COMPOSED OF A VARIETY OF
ROLES AND POSITIONALITIES HERE
THAT INCLUDES A LOT OF PEOPLE
WHO ARE AUTISTIC.
SO TO BE MORE EXPLICIT, IN EARLY
CHILDHOOD, I DIDN'T HEAR
ANYTHING ABOUT THE ADDITIONAL
LEVEL OF SUPPORT THAT IS NEEDED
FOR A PARENT WHO'S AUTISTIC,
PARENTING THEIR AUTISTIC CHILD.
MANY OF WHOM AT THE EARLY
CHILDHOOD INTERVENTION LEVEL
DON'T EVEN KNOW THAT THEY
THEMSELVES ARE ON THE SPECTRUM.
SO THAT CREATES A WHOLE CAN OF
WORMS.
I LIVED IT.
I ALSO HEARD VERY COMPARABLE
THINGS FROM FEMA ABOUT
SUPPORTING AUTISTIC FAMILIES
INSTEAD OF -- OR IN ADDITION TO
NEEDING TO SUPPORT AUTISTIC
ADULTS WHO MAY BE GOING THROUGH
CRISES.
AND I'D ALSO LIKE TO KNOW MORE
ABOUT HOW ALL THE AGENCIES ARE
DOING CO-CREATION IN THESE
POLICIES AND PROCEDURES WITH
AUTISTIC PEOPLE.
SO I'M TRYING NOT TO BE TOO
DETAILED BUT I'M TRYING ALSO TO
GET A BROAD VIEW OF HOW ARE
AUTISTIC PEOPLE ACTUALLY
CONTRIBUTING TO THESE POLICIES,
PROCEDURES AND PROTOCOLS.
>> THANK YOU.
AND WE CAN HAVE A FEW BRIEF
COMMENTS FROM FIWA MEMBERS IF
YOU'D LIKE TO SAY ANYTHING ABOUT
THAT.
OF COURSE WE ASK FOR THESE TO BE
VERY BRIEF PRESENTATIONS SO
PEOPLE WEREN'T ABLE TO GO IN
DEPTH INTO ALL THEIR PROGRAMS,
BUT IF YOU HAVE ANY BRIEF
COMMENTS, WELCOME HEARING FROM
FIWA MEMBERS.
>> I MEAN, CAN I JUST SPEAK FOR
OURSELVES ACROSS ALL OF OUR
PROGRAMS, ADVOCATES ARE PART OF
NOT ONLY OUR PEER REVIEW PROCESS
WHICH, DENA, I THINK YOU WERE A
PART OF MANY YEARS AGO, BUT ALSO
OUR PROGRAMMATIC REVIEW PROCESS,
WE HAVE A SELF-ADVOCATE ON OUR
PANEL.
CURRENTLY -- SO SHE'S ABLE TO
GIVE A LOT OF INSIGHTS THAT
WASN'T NECESSARILY THERE JUST A
FEW YEARS BACK.
SO WE DEFINITELY LEAN ON THE
AUTISTIC ADULT COMMUNITY,
PROVIDE THEIR LIVED EXPERIENCES.
>> THANK YOU.
YOU ALSO MENTIONED THE
PARTICIPATION OF AUTISTIC
RESEARCHERS THAT HAS INCREASED
RECENTLY, WHICH IS GREAT.
ALLYSON DEAN HAD A COMMENT.
>> YEAH, I JUST -- I JUST WANTED
TO RESPOND IN TERMS OF THE EARLY
CHILDHOOD COMMENT.
AGAIN, FIVE MINUTES, I PICKED
WHAT I THOUGHT WAS MOST SALIENT,
BUT WE HAVE JUST RECENTLY
LAUNCHED AN ENTIRE WEBSITE TO
SUPPORT ADULTS AND FAMILY
MEMBERS WITH DISABILITIES, AND
THE FOCUS OF THAT SITE REALLY IS
COGNITIVE DISABILITIES, LEARNING
DIFFERENCES, AUTISM SPECTRUM
DISORDER.
SO THAT WOULD BE PROBABLY WHERE
MOST OF OUR RESOURCES WOULD BE.
WE ALSO OF COURSE PARTNER
HEAVILY WITH THE PARENT TRAINING
INFORMATION CENTERS TO SUPPORT
FAMILIES WITH DISABILITIES.
>> THANK YOU, ALLYSON, AND MAYBE
WE CAN GET THAT INFORMATION FROM
YOU AND ADD THEM TO THE ROUND
ROBIN DOCUMENT AFTER THE
MEETING.
>> SURE, ABSOLUTELY.
>> ALL RIGHT.
>> QUICK COMMENT.
A LOT OF MY WORK IS REALLY BEEN
INTERNALLY FOCUSED ON HOW WE
EDUCATE FIRST RESPONDERS ON
ASPECTS OF THE WORK THAT THEY DO
WHERE THEY MAY INTERACT WITH
SOMEONE.
I JUST COMPLETED AN EX-TECIAL EL
AFFAIRS ACADEMY VIDEO IN
COLLABORATION WITH NACDD WHERE
WE TALKED THROUGH HOW WE
RECOGNIZE THE SIGNS OF AUTISM
WHERE SOMEBODY MAY NOT BE ABLE
TO TALK ABOUT THAT, OR IF THEY
SEE IT FROM AFAR, WAYS THAT THEY
CAN BETTER UNDERSTAND AND HOW
THEY HELP.
SO IT'S REALLY ABOUT EDUCATING
THE WORKFORCE AND MAKING SURE
THAT WE UNDERSTAND IT WELL
ENOUGH TO DO A BETTER JOB.
WE ALSO DID A PODCAST WITH THE
FORMER CEO OF NHCBD ROBYN
TROUTMAN WHERE WE TALKED ABOUT
THE INTERSECTION OF AUTISM AND
DISASTERS AND DEVELOP MENTAL
DISABILITIES BROADLY IN
DISASTER.
SO WE'RE CREATING CONTENT THAT
HOPEFULLY WILL FINDITY WAY INTO
THE RIGHT HANDS AND MINDS.
>> THANK YOU.
NEXT WE'LL HEAR FROM JENNY MAY
PHAN.
>> HI, EVERYONE.
THIS IS JENNY SPEAKING.
DR. GILLUMS, I'M VERY THANKFUL
FOR WHAT YOU DO.
I WAS A FEMA ASSISTANCE
RECIPIENT DURING HURRICANE
KATRINA BECAUSE I GREW UP IN NEW
ORLEANS, SO I ABSOLUTELY SEE THE
IMPORTANCE OF THE WORK THAT YOU
DO FOR THE DISABILITY COMMUNITY.
AND I'M WONDERING, MA BECAUSE WE
ARE SEEING INCREASE OF TORNADOES
AND HURRICANES HAPPENING EARLIER
AND EARLIER EACH YEAR, AND THAT
THERE ARE FAMILIES AS
DR. GILLUMS RAISED A FEW CASES
DURING HIS PRESENTATION THAT
HAVE VERY UNIQUE SITUATIONS THAT
THEY'RE NAVIGATING AND NEED
FURTHER SUPPORTS AND ASSISTANCE
THAT THE IACC COULD PERHAPS
MAYBE DEVELOP A WORKING GROUP
WITH FEMA TO ADDRESS THE
CONCERNS THAT COULD BE
APPROACHING AND GROW IN THE
FUTURE.
I HAVE SEEN THINGS IMPROVE IN
TERMS OF FEMA SUPPORT FOR
FAMILIES WITH DISABILITIES, BUT
I THINK THERE'S GOING TO
PROBABLY BE INCREASE IN DEMANDS.
DR. GILLUMS, MAYBE YOU CAN SPEAK
TO THIS WITH ALL THE
MOBILIZATION YOU'RE DOING RIGHT
NOW IN 2024.
ARE YOU SEEING THESE INCREASES
HAPPEN AND THAT THERE ARE HIGHER
DEMANDS OF SUPPORT REQUESTS FROM
THESE FAMILIES, FROM AUTISM
FAMILIES?
>> THAT DATA POINT HASN'T BORNE
ITSELF OUT IN MY WORK.
IT'S MORE THESE ISOLATED CASES.
I RELY ON STAKEHOLDERS,
COMMUNITY STAKEHOLDERS TO BRING
THAT TO ME, THOUGH.
WE NEVER KNOW WHERE DISASTERS
ARE GOING TO HAPPEN.
AND IF IT HAPPENS IN A PLACE
WHERE THERE'S A SIGNIFICANT
REPRESENTATION OF FAMILIES OR
INDIVIDUALS WHO LIVE WITH
AUTISM, THEN IT'S EASY BECAUSE
THEY'RE ALREADY AGGREGATED, BUT
IN PARTS OF TEXAS RIGHT NOW
WHERE TORNADOES WERE BATTERING
THE AREA AND NOW WE HAVE A
HURRICANE THAT MAY DO MORE
DAMAGE, IT'S HARD BECAUSE I NEED
THE ADVOCATES TO SURFACE.
AND A LOT OF THIS IS IDEALLY
ESTABLISHED BEFORE DISASTERS.
ONE OF THE THINGS I TALK ABOUT
IS THE NEED TO HAVE
ACCOUNTABILITY AT THE STATE
LEVEL, WHO'S OVERSEEING
DISABILITY COORDINATION ON THE
STATE SIDE?
SO I CAN BEGIN THAT CONVERSATION
QUICKLY.
THAT'S OFTEN THE GAP.
MAYBE THAT'S WHERE THE
INTERAGENCY COMMITTEE CAN HELP
ME SOCIALIZE THE IDEA OF HAVING
EVERY STATE HAVE A PERSON THAT'S
EITHER MY COUNTERPART, SOMEBODY
WHO'S RESPONSIBLE TO THE
EXECUTIVE LEADERSHIP IN THE
STATE.
AND ALSO WHERE DOES THIS SHOW UP
IN THE STATE'S DISASTER PLAN?
I'D LOVE TO COME UP WITH MODEL
EMERGENCY MANAGEMENT POLICIES
THAT CONTEMPLATE THE NEEDS OF
THOSE WITH LIVED EXPERIENCE WITH
AUTISM.
AND WE CAN ATTACH THOSE TO ANY
STATE.
THE NEEDS ARE NOT THAT MUCH
DIFFERENT.
IT'S THE CONTEXT THAT DIFFERS.
BUT I DO HAVE IDEAS ON HOW WE
CAN SCALE, AND I'D LOVE TO HAVE
THAT CONVERSATION AT ANY POINT.
>> THANK YOU.
AND THANK YOU AGAIN FOR GIVING
US THIS OPPORTUNITY TO SHARE
SOME OF THE WORK AMONG FEMA
MEMBERS AND HOPEFULLY YOU'LL
FEEL CONFIDENT THAT THE FIWA
WILL CONSTANTLY BE MEETING EVEN
WHEN THE IACC IS OUT OF SESSION
AND CONTINUING TO COORDINATE ON
BEHALF OF AUTISTIC FAMILIES,
INDIVIDUALS, AND WORKING WITH
THE COMMUNITY.
THANK YOU SO MUCH, AND WE'LL
TAKE A BREAK NOW AND RECONVENE
AT 12:05, AND I'LL JUST TRY TO
KEEP THE NEXT SESSION ON MY PART
A LITTLE SHORTER SO THAT YOU CAN
HAVE THIS BREAK.
THANK YOU SO MUCH.
SO I'LL GET STARTED.
I THINK PEOPLE WILL BE WALKING
INTO THE ROOM HERE.
WE'RE GOING TO GET STARTED ON
COMMITTEE BUSINESS.
IS OH SO SHELLSO SHELLI AND I WE
COLLABORATING ON THIS TO BRING
YOU ALL OUR UPDATES.
IN THE OVERVIEW, WE'RE GOING TO
BE TALKING ABOUT IACC
ACCOMPLISHMENTS AND THIS IS THE
LAST MEETING AND WE WANT TO
RECOGNIZE ALL THAT THE IACC HAS
MANAGED TO DO IN THE PAST FEW
YEARS.
ALSO OUR CLOSEOUT PLANNING FOR
THE COMMITTEE, INCLUDING
COMPLETION OF PENDING REPORTS.
AND THE 2024 IACC SUMMARY OF
ADVANCES DISCUSSION.
SO I'M GOING TO START WITH
SAYING THANK YOU TO IACC MEMBERS
AND ALTERNATES WHO'VE SERVED
BETWEEN 2021 TO 2024.
IT YOU CAN BELIEVE THIS, THERE
HAVE BEEN 80 DIFFERENT
INDIVIDUALS WHO HAVE SERVED IN
VARIOUS CAPACITIES WITH THE IACC
AS MEMBERS OR ALTERNATES, AND WE
GOT THEM ALL ON THIS SLIDE
TOGETHER, AND IT'S A WONDERFUL
DIVERSE GROUP, MANY DIFFERENT
PERSPECTIVES AND POINTS OF VIEW.
MANY DIFFERENT FEDERAL AGENCIES
AND DEPARTMENTS REPRESENTED AND
IT WAS THE LARGEST AND MOST
DIVERSE GROUP TO DATE.
AND WE'RE REALLY VERY GRATEFUL
TO ALL OF YOU, AND SHELLI, YOU
MAY ALSO WANT TO SAY SOMETHING
ABOUT THIS.
>> I JUST WANT TO ACKNOWLEDGE
THE AMOUNT OF TIME AND EFFORT
THAT SO MANY INDIVIDUALS HAVE
CONTRIBUTED TO THIS COMMITTEE,
AND I THINK THIS IS A GREAT
OPPORTUNITY TO NOT JUST THANK
PEOPLE BUT FOR ALL OF US TO
REFLECT AND FEEL GOOD ABOUT THE
THINGS WE'VE ACCOMPLISHED OVER
THE LAST FEW YEARS.
THANKS, SUSAN.
>> THANK YOU.
YES, THANK YOU FOR YOUR SERVICE
TO THE COMMUNITY, TO THE
SECRETARY OF HEAL HEALTH AND HUN
SERVICES, AND TO ALL THE FEDERAL
AGENCIES FOR PROVIDING YOUR
INPUT ON A REGULAR BASIS IN THE
COMMITTEE, AND TO MEMBERS OF THE
PUBLIC WHO REGULARLY ATTEND OUR
MEETINGS, PROVIDE PUBLIC
COMMENTS, RESPOND TO OUR RFIs,
GIVE US COMMENTS ON OUR
DOCUMENTS.
WE REALLY APPRECIATE ALL OF YOUR
INPUT AND HAVE CONTINUED TO
STRIVE TO REFLECT THE
COMMUNITY'S INPUT INTO OUR
DOCUMENTS.
SO THANK YOU SO MUCH.
I ALSO WANT TO POINT OUT SOME
SPECIFIC ACCOMPLISHMENTS.
WE'VE HAD 11 FULL COMMITTEE
MEETINGS SINCE STARTING UP IN
2020-21, AND WE ALSO HAVE HAD
ONE WORKING GROUP MEETING
FOCUSED ON THE STRATEGIC PLAN,
AND SEVERAL DIFFERENT IMPORTANT
AUTISM-RELEVANT TOPICS DISCUSSED
INCLUDING HOUSING,
COMMUNICATION, MENTAL HEALTH,
EMPLOYMENT, NEEDS ACROSS THE
ENTIRE SPECTRUM, AGING, SOCIAL
SECURITY, PREVALENCE AND
EPIDEMIOLOGY, RACIAL AND ETHNIC
DISPARITIES AND EQUITY, JUSTICE
AND LAW ENFORCEMENT ISSUES,
INTERNATIONAL ACTIVITIES,
WANDERING, COVID-19 IMPACTS,
SUPPORTIVE SERVICES, AND TODAY
WE'RE GOING TO BE TALKING ABOUT
FAMILY CAREGIVING.
SO WE'VE COVERED A LOT OF GROUND
AND THE IACC STRATEGIC PLAN
REFLECTS THESE AND MORE TOPICS.
WE ALSO AS A COMMITTEE HAVE
COMPLETED SIX DIFFERENT REPORTS,
INCLUDING A BRAND NEW STRATEGIC
PLAN, THREE ISSUES OF THE
SUMMARY OF ADVANCES IN AUTISM
RESEARCH, AND TWO PORTFOLIO
ANALYSIS REPORTS.
AND WE CURRENTLY HAVE A
STRATEGIC PLAN UPDATE
ONCO-OCCURRING CONDITIONS THAT'S
PENDING, AN EDITION OF THE
SUMMARY OF ADVANCES THAT'S
PENDING AND A PORTFOLIO ANALYSIS
THAT'S PENDING.
AND ANOTHER ISSUE OF THE SUMMARY
OF ADVANCES AS WELL THAT WE'LL
BE TRYING TO PUT OUT.
SO THANK YOU FOR ALL OF YOUR
HARD WORK AND CONTRIBUTIONS TO
THESE DIFFERENT REPORTS.
TO EVERY PERSON ON THE COMMITTEE
AND TO THE PUBLIC FOR RESPONDING
TO RFIs TO HELP INFORM SOME OF
THESE DOCUMENTS.
SO TO GIVE YOU AN UPDATE ON THE
AUTISM CARES ACT, IT'S GOING TO
BE SUNSETTING ON SEPTEMBER 30TH,
2024.
AND THAT WILL END THE
AUTHORIZATION FOR THIS
COMMITTEE.
HOWEVER, WE ALSO KNOW THAT
CONGRESS IS WORKING VERY HARD ON
RE-AUTHORIZING THE CARES ACT AND
WHEN THAT RE-AUTHORIZATION
HOPEFULLY GOES THROUGH, THEN THE
IACC WILL BE CONTINUING ITS
WORK, AND WE WILL BE SEATING A
NEW COMMITTEE.
SO THE DRAFT LEGISLATION HAS
BEEN RE-AUTHORIZED -- TO
RE-AUTHORIZE THE IACC HAS BEEN
INTRODUCED IN CONGRESS AND WE
PROVIDED THE BILL THERE, AND THE
SENATE IS WORKING ON THEIR BILL.
AND HHS WILL BEGIN THE PROCESS
TO SOLICIT NOMINATIONS FOR NEW
PUBLIC MEMBERS ONCE WE HAVE
RECEIVED THAT RE-AUTHORIZATION,
AND ONAC WILL WORK WITH THE
OFFICE OF THE SECRETARY TO PUT
OUT A SOLICITATION.
IT WILL GO IN THE FEDERAL
REGISTER AND WE'LL SEND OUT
EMAILS, PUT IT ON TWITTER, OR X,
WE'LL PUT IT ON OUR WEBSITE, SO
YOU WILL HEAR ABOUT IT.
AND MEMBERS OF THE COMMITTEE
CURRENTLY PUBLIC MEMBERS WHO
HAVE ONLY SERVED ONE TERM WOULD
BE ELIGIBLE FOR RE-NOMINATION,
AND WE ALSO WILL WELCOME
NOMINATIONS FROM ACROSS THE
ENTIRE AUTISM COMMUNITY.
SO BE LOOKING FOR THAT MOST
LIKELY SOMETIME IN
OCTOBER/NOVEMBER.
AND WE JUST WELCOME AS MANY
PEOPLE PUTTING IN NOMINATIONS AS
WOULD LIKE TO SERVE.
IT'S A REALLY VALUED EXPERIENCE
BEING ABLE TO SERVE AND PROVIDE
YOUR INPUT TO THIS COMMITTEE IN
THAT WAY, AND WE'VE APPRECIATED
EVERYONE HERE AND LOOK FORWARD
TO THE NEW COMMITTEE IN THE
FUTURE.
ALICE CARTER HAS A QUESTION.
>> I HAVE A COMMENT, I JUST WANT
TO THANK YOU, SUSAN, FOR YOUR
LEADERSHIP AND FOR MAKING
SERVING ON THIS COMMITTEE REALLY
A PLEASURE.
I HAVE BEEN PRESENT ONLY DURING
THE TIME FRAME YOU'RE TALKING
ABOUT, AND I JUST REALLY WANT TO
THANK YOU FOR WONDERFUL
LEADERSHIP AND LEADERSHIP MAKES
A HUGE DIFFERENCE.
>> THANK YOU SO MUCH, ALICE.
AND I HAVE TO THANK THE ONAC
TEAM AND OUR CONTRACTOR, ROSALY
AND ASSOCIATES, AND THE NIH
CENTER FOR INFORMATION
TECHNOLOGY THAT ALSO HAVE BEEN
REALLY SUPPORTIVE IN TRYING TO
MAKE THESE MEETINGS GO SMOOTHLY
AND WE'VE ALL LEARNED TOGETHER
ON INCREASING ACCESSIBILITY.
I THINK WE'VE ACTUALLY REALLY
MADE SOME IMPORTANT STEPS IN
INCREASING THE ACCESSIBILITY OF
OUR MEETINGS AND WE APPRECIATE
ALL THE FEEDBACK AND CONTINUE TO
TRY TO IMPROVE AND INCORPORATE
YOUR SUGGESTIONS.
SO WE WILL BE CONTINUING TO DO
THAT AND WELCOME FEEDBACK, BUT
THANK YOU SO MUCH FOR THAT.
DENA.
>> I JUST WANTED TO SPEAK
SPECIFICALLY TO THE
ACCOMMODATIONS.
YOU KNOW, WE HAVE MORE
INDIVIDUALS IDENTIFYING AS
DISABLED ON THE COMMITTEE THAN
EVER BEFORE, AND ACCOMMODATING
THAT MANY WAYS OF COMMUNICATING,
I KNOW HAS NOT BEEN AN EASY
LIFT, BUT I JUST WANT TO
CHAMPION THE SUPPORT STAFF, THE
CONTRACTORS AND YOU, SUSAN, FOR
LISTENING WITH AN OPEN MIND AND
EXPEDITIOUSLY TRYING TO ADDRESS
ANY VOIDS IN TERMS OF
ACCOMMODATION AND SUPPORT THAT
HAVE MADE ATTENDING IACC AS BOTH
A MEMBER AND A COMMITTEE MEMBER
AND AS PUBLIC MEMBERS SO MUCH
MORE ACCESSIBLE THAN IT'S EVER
BEEN BEFORE.
SO I JUST WANTED TO GIVE YOU
KUDOS FOR THAT, ALL OF YOU.
THANK YOU.
>> THANK YOU SO MUCH.
AND THANK YOU EACH FOR YOUR
INPUT ON THAT.
WE'LL CONTINUE TRYING TO MAKE IT
MORE ACCESSIBLE OVER TIME.
SAM.
>> I ALSO WANTED TO GIVE KUDOS
AND AS ONE OF THE PEOPLE WHO
WILL PROBABLY BE CYCLING OFF
BECAUSE I'M NOW APPROACHING THE
END OF MY SECOND TERM, I JUST
WANTED TO SAY HOW FAR THE IACC
HAS COME SINCE I STARTED.
WE STARTED WITH THREE MEMBERS
WHO ARE AUTISTIC, NOW IT'S CLOSE
TO A THIRD.
I WISH THAT WE COULD HAVE HAD
MORE IN-PERSON MEETINGS BEFORE I
CYCLED OFF BECAUSE IT'S SO GREAT
TO SEE HOW -- YOU KNOW, THERE'S
SEVERAL OTHER AUTISTIC PEOPLE IN
THE ROOM, AND IT'S A REALLY
FUNDI NA MIBGFUNDYNAMIC THAT'S N
WE WERE TRYING TO DO THIS BY
ZOOM ONLY, NOW THAT IT HYBRID.
BUT I REALLY HOPE THAT THIS
CONTINUES.
I HOPE THAT, YOU KNOW, THIS NEW
IACC WITH SO MANY NEW VOICES, SO
MANY DIFFERENT PEOPLE AS PUBLIC
MEMBERS, CAN BE MAINTAINED IN
THE NEXT CYCLE, AND I LOOK
FORWARD TO JOINING YOU ALL OVER
THERE.
>> THANK YOU, SAM, AND WE HOPE
THAT YOU WILL COME BACK TO
MEETINGS.
THANK YOU BOTH TO JULIE TAYLOR
AND SAM CRANE FOR TWO TERMS OF
SERVICE ON THE IACC.
SO YOU'VE ALL BEEN WITH US SINCE
THE AUTISM CARES ACT OF 2014.
AND IT'S BEEN A LONG TIME, AND
WE ALL HAVE GROWN THROUGH THIS
PERIOD AND WE REALLY APPRECIATE
ALL OF YOUR MANY CONTRIBUTIONS
TO THE COMMITTEE AND LOOK
FORWARD TO CONTINUING TO EVOLVE
TOGETHER.
ANY OTHER COMMENTS BEFORE WE
MOVE FORWARD?
OH, IVANOVA.
>> THIS IS IVANOVA.
I'M JUST VERY HONORED TO HAVE
BEEN -- ALLOWED TO BE ON THE
IACC, AND I'M ALSO VERY THANKFUL
FOR ALL OF THE ACCOMMODATIONS
AND SUPPORTS THAT THE IACC HAS
GIVEN ME.
IT WAS KIND OF SCARY, TRYING TO
GET ON TO THE IACC, AND I REALLY
APPRECIATE THAT EVERYBODY REALLY
SUPPORTED ME WITH THE ONBOARDING
PROCESS AND SUPPORTED ME WITH
ALL THOSE LIKE LOGISTICAL
PAPERWORK THINGS THAT ARE REALLY
HARD FOR ME AS A PERSON WITH
INTELLECTUAL DISABILITIES, SO I
REALLY APPRECIATE ALL THAT
SUPPORT, AND I'VE BEEN REALLY
ENJOYING BEING ON THE IACC.
SO THANK YOU UC.
>> THANK YOU SO MUCH, IVANOVA.
WELL, WE HAVE REALLY ENJOYED
WORKING TOGETHER, AND I LOOK
FORWARD TO US ALL KEEPING IN
TOUCH.
AND TO THE NEW ITERATION OF THE
COMMITTEE IN THE FUTURE, SO
WE'LL KEEP YOU POSTED ON NEW
DEVELOPMENTS IN THAT REGARD.
SO THE PLANS GOING FORWARD FROM
NOW ARE THAT IF WE DO GET THE
RE-AUTHORIZATION, OUR PLAN WOULD
BE AT THE TIME OF
SEPTEMBER 30TH, IF WE HAVE A
RE-AUTHORIZATION IN PLACE, THAT
WE WOULD EXTEND MEMBER TERMS FOR
180 DAYS, ONLY TO COMPLETE OLD
BUSINESS SO WE WILL NOT HOLD NEW
FULL COMMITTEE MEETINGS AND TAKE
UP NEW ISSUES, BUT WE HAVE A FEW
PROJECTS TO FINISH, SO WE WILL
WORK TO COMPLETE THE 2023 IACC
SUMMARY OF ADVANCES, WHICH
ACTUALLY IS ALMOST COMPLETE NOW
AND WE'LL TALK ABOUT THAT IN A
FEW MINUTES.
WE ALSO WILL COMPLETE THIS
CO-OCCURRING CONDITIONS UPDATE
OF THE STRATEGIC PLAN AND WE
DON'T WANT TO GIVE THAT TO THE
NEXT COMMITTEE BECAUSE THE
PREVIOUS COMMITTEE GAVE THAT TO
US, AND THANK YOU, JULIE TAYLOR,
FOR YOUR LEADERSHIP WITH THAT.
AND WE ARE DETERMINED TO GET
THIS DONE.
SO WE'LL TALK ABOUT THAT IN A
FEW MINUTES AS WELL.
AND THE 2024 IACC SUMMARY OF
ADVANCES.
SO THOSE WILL BE OUR GOALS, AND
WE'LL ACCOMPLISH SOME OF THIS BY
AFTER THIS MEETING, IF WE NEED
ADDITIONAL SHORT ZOOM MEETINGS
TO TALK WITH THE COMMITTEE, WE
MAY CONVENE THOSE AND WE'LL TELL
YOU A LITTLE MORE ABOUT THAT.
BUT YOU WILL BE HEARING ABOUT
THOSE TERM EXTENSIONS FROM THE
OFFICE WHEN THAT COMES UP ONCE
THERE'S A RE-AUTHORIZATION IN
PLACE.
AND OUR POST 2024 -- OR POST
JULY 2024 ACTIVITIES WILL
CONSIST OF -- WE'LL BE SENDING
YOU EMAILS MAYBE ASKING YOU TO
RESPOND TO SURVEYS AND SETTING
UP SOME SMALLER ZOOM MEETINGS,
JUST TO TAKE IN INPUT SO THAT WE
CAN COMPLETE PROJECTS.
AND NEXT I'LL SHARE WITH YOU THE
2023 IACC SUMMARY OF ADVANCES
UPDATE.
SO O NAC HAS PREPARED THE DRAFT
REPORT AND IACC MEMBERS WILL
RECEIVE THE DRAFT REPORT FOR
PREVIEW AND COMMENT VERY SOON,
SO WE'LL BE SENDING THAT OUT FOR
YOU, AND BEN WILL PREPARE THE
FINAL REPORT ONCE WE'VE RECEIVED
ANY FEEDBACK FROM YOU, AND
HOPEFULLY PUBLISH THIS SUMMER.
ONE ISSUE HAS COME UP WITH THIS.
ONE OF THE ARTICLES THAT THE
COMMITTEE SELECTED, THE AUTHOR
GOT IN TOUCH WITH US AND
ACTUALLY TOLD US THAT THERE WERE
TWO ARTICLES THAT THEY PUT
FORWARD THAT WERE BACK TO BACK
PUBLISHED ARTICLES, THEY'RE BOTH
NAMED THERE, THAT ARE PART OF A
PACKAGE THAT WAS IMPORTANT AND
THEY SAID THAT THEY WOULD LIKE
TO SEE BOTH ARTICLES AK
ACKNOWLEDGED, SO I WANTED TO ASK
YOU IF YOU ARE COMFORTABLE WITH
ACKNOWLEDGING BOTH IN THE SAME
ADVANCE, AND WE HAVE HAD
PRECEDENT TO DO THIS BEFORE,
WHERE, SAY, THERE WERE COMPANION
PAPERS, SO THESE ARE COMPANION
PAPERS IN THE SAME ISSUE OF
JAMA.
IF ANYONE HAS ANY QUESTIONS
ABOUT THAT, MORE THAN THAT, WHAT
WE WANTED TO ASK YOU IS IF YOU
HAVE ANY CONCERNS ABOUT US JUST
ADJUSTING THAT SUMMARY TO
ACKNOWLEDGE BOTH PAPERS
TOGETHER.
>> SO JUST TO CLARIFY, THE
SECOND ARTICLE WAS NOT
NOMINATED?
WE DIDN'T VOTE THE SECOND
ARTICLE DOWN?
>> SO WHAT HAPPENED ACTUALLY AT
A PREVIOUS MEETING, BOTH OF THE
ARTICLES WERE NOMINATED AND AT
THE TIME I DON'T THINK WE WERE
COMPLETELY REALIZING THESE WERE
IN A BACK TO BACK PUBLICATION,
AND SO DR. GORDON ASKED, CAN WE
JUST CHOOSE ONE OF THEM AND WE
DID, AND WE CHOSE ONE OF THEM,
BUT THEN NOW THE AUTHOR HAS SAID
WELL, IT'S A LITTLE AWKWARD FOR
US TO MAYBE ACKNOWLEDGE ONE
WITHOUT THE OTHER BECAUSE
ACTUALLY THEY WERE BOTH IN A
PART OF AN FDA PACKAGE FOR
LOOKING AT THAT INTERVENTION.
SO THEY SAID THAT IT WOULD MAKE
MORE SENSE FOR US TO TRY TO
ACKNOWLEDGE BOTH AT THE SAME
TIME.
AND SO THAT'S SOME NEW
INFORMATION WE GOT THAT WE
DIDN'T HAVE AT THE TIME.
>> QUICK FOLLOW-UP, THIS WILL
NOT KNOCK ANOTHER ARTICLE OFF,
THEY WOULD BE TOGETHER?
>> NO, THEY WOULD JUST BE
TOGETHER.
SO IT WON'T CHANGE ANYTHING IN
TERMS OF -- THERE'S STILL 20
DIFFERENT ARTICLES THAT YOU ALL
VOTED ON, AND YOU'LL SEE WHEN WE
SEND THAT OUT, AND SO I JUST
WANTED TO MAKE SURE THE
COMMITTEE IS OKAY WITH THIS, SO
I'D ASK YOU -- AND DO WE HAVE A
POLL SET UP OR -- YEAH, SO WE
HAVE A LITTLE POLL SET UP.
AND MAYBE ONI CAN YOU EXPLAIN
HOW THAT POLL WORKS?
>> YES.
SO THOSE OF YOU -- SORRY.
THOSE OF YOU WHO ARE ON ZOOM,
YOU CAN USE THE POLL.
IF YOU'RE IN THE ROOM, YOU CAN
JUST RAISE YOUR HANDS AND WE'LL
HAVE PEOPLE THAT ARE COUNTING
FOR AND AGAINST.
SO WOULD YOU LIKE ME TO -- OKAY.
SO IF YOU HAVE NO CONCERNS WITH
ADDING BOTH PAPERS TO THE
PUBLICATION, PLEASE RAISE YOUR
HANDS.
OR VOTE IN ZOOM.
NO CONCERNS.
KEEP YOUR HANDS UP SO WE MAKE
SURE WE GET EVERYBODY.
AND WE HAVE WALTER IN THE BACK.
I JUST WANT TO MAKE SURE YOU
GUYS SEE HIM.
THANKS.
ALL RIGHT.
DOES ANYBODY HAVE CONCERNS ABOUT
INCLUDING BOTH ARTICLES?
DR. RIVERA?
ANY ABSTAINING FROM VOTING IN
THE ROOM?
DR. JOHNSON?
OKAY.
AND ONLINE, WE HAVE 14 WHO SAID
THEY HAVE NO CONCERNS AND WOULD
LIKE TO ACKNOWLEDGE BOTH.
NO ONE ONLINE SAYING THEY HAVE
CONCERNS, AND WE HAVE ONE
ABSTAINING FROM VOTING.
>> SO IT LOOKS LIKE THE MAJORITY
HAS SAID THAT THEY WOULD BE
COMFORTABLE WITH HAVING BOTH
ACKNOWLEDGED -- IF ANYONE WHO'S
DISSENTING WANTS TO SHARE ANY
COMMENTS, YOU'RE WELCOME TO DO
THAT.
I'M HAPPY TO HAVE YOU AIR ANY
CONCERNS YOU'D WANT THE
COMMITTEE TO KNOW ABOUT.
>> FIRST OF ALL, I'M FINE WITH
IT BOTH BEING ACKNOWLEDGED.
IT'S NOT THE HILL I'M GOING TO
DIE ON.
BUT I DO THINK THAT IT NOT
COMPLETELY CLEAR TO ME THAT
THESE ARE COMPANION PIECES.
I THINK THEY ARE SEPARATE
ARTICLES.
WE LOOKED AT THEM BOTH.
WE VOTED ON ONE.
SO THAT'S MY ONLY DISSENT.
BUT I'M VERY HAPPY TO GO WITH
THE MAJORITY OPINION HERE.
>> OKAY.
ANYTHING ELSE THAT NEEDS TO BE
SHARED?
IN THE ROOM?
OKAY.
SAM?
>> I WAS JUST GOING TO SAY, WE
PUT IT IN IN A WAY THAT REFLECTS
THEY'RE BACK TO BACK COMPANION
PIECES SO THAT IT'S MORE CLEAR
TO READERS?
>> YES.
WE HAVE -- SO WE HAVE A VERSION
OF THE DRAFT WHERE WE'VE TRIED
TO WEAVE IT IN AND WE SAY THAT
THEY'RE COMPANION ARTICLES.
SO -- ALL RIGHT, SO WE WILL --
OH,
>> NOT THAT I'M MAKING ANY
SUGGESTIONS ABOUT YOU HAVING TO
RE-WORD THINGS THAT YOU'VE
ALREADY DONE, BUT I WONDER IF IT
WOULD MAKE ACCEPTS TO SORT OF
KEEP IT THE WAY THAT WE VOTED
AND THEN MAKE A NOTE AT THE
BOTTOM THAT JUST SAYS, THIS IS A
COMPANION -- I DON'T KNOW.
I MEAN, I'M SORT OF -- WE DID
VOTE ON ONE AS OPPOSED TO THE
OTHER AND I'M SURE THAT THEY
WOULD LIKE THEM ACKNOWLEDGED
KIND OF AS A PACKAGE.
I'M WONDERING IF WE COULD SORT
OF KEEP THE SUGGESTION OR THE --
SORT OF THE DESCRIPTION OF THE
ONE THAT WE HAD VOTED AS AN
ADVANCE AND THEN ACKNOWLEDGE THE
OTHER ONE SORT OF -- OR JUST --
HAVE IT ACKNOWLEDGED IN SOME WAY
SO PEOPLE WOULD SEE THAT THEY GO
TOGETHER.
BUT IF IT DOES AS YOU PUT THE
DESCRIPTION TOGETHER, IF IT
REALLY DOES FEEL LIKE THEY DO
REALLY CLEARLY GO TOGETHER, THEN
MAYBE THAT DOESN'T MAKE SENSE.
>> THAT MAKES SENSE.
WOULD YOU ALL FEEL COMFORTABLE
WITH US JUST LOOKING AT IT?
IT HARD TO DO IT IN THE ROOM
BECAUSE I'M NOT LOOKING AT IT
RIGHT NOW AND JUST LOOKING AT
AND SEEING WHAT ACTUALLY MAKES
SENSE IN THE CONTEXT, BUT THAT'S
AN ALTERNATE SUGGESTION WE COULD
JUST ACKNOWLEDGE THE OTHER ONE
AS A FOOTNOTE.
AND WE COULD ADD IT BACK TO THE
NOMINATION LIST.
IT WAS REMOVED FROM THE
NOMINATION LIST BUT WE COULD PUT
IT BACK ON THE LIST IF IT'S NOT
OVERTLY LIKE PUT IN THE ADVANCE.
>> YOU HAVE TWO COMMENTS ONLINE.
ONE IS FROM ALICE CARTER.
>> ALICE?
THANK YOU, SHELLI.
ALICE, GO AHEAD.
>> I JUST WONNER D-DAY IF WE
HAVWONDERED, IF WE HAVE ALIST OH
GO UNDER ONE NUMBER.
SO I THINK IN THAT CASE IT'S
CLEAR THESE ARE COMPANION PAPERS
AND IT WILL ALSO PROBABLY BE
OBVIOUS FROM THE CITATIONS THAT
THEY'RE COMPANION PAPERS.
>> SO HOW WE HAVE IT, IF WE WERE
GOING TO DO THIS AND HOW WE'VE
DONE IT IN THE PAST WHEN WE HAD
THIS SITUATION OF COMPANION
PAPERS IS, WE'LL LIST BOTH
CITATIONS, HAVE ONE PARAGRAPH
THAT MENTIONS BOTH PAPERS AND
TALKS ABOUT HOW THEY RELATE, AND
THEN THAT'S IT.
AND IT'S ONE OF THE 20.
BUT TWO PAPERS ARE ACKNOWLEDGED
IN ONE OF THEM.
AND WAS IT PAUL THAT HAD --
ALLYSON, DO YOU HAVE A COMMENT?
>> YEAH, HI.
ALISON MARVIN FROM SOCIAL
SECURITY.
SO I THINK THE MAIN CONCERN HERE
IS THAT THERE WAS A FORCED
KICKOUT OF ONE OF THE PAPERS.
SO THAT POTENTIALLY BOTH PAPERS
COULD HAVE MADE IT INTO THE TOP
20.
SO THAT WAS MY CONCERN THAT WE
ELIMINATED ONE DELIBERATELY.
BUT I DO LIKE THE OPTION OF YOU
REVIEWING THEM AGAIN AND IF THEY
ARE TRULY COMPANION PIECES, TO
CALL THEM NUMBER 10A AND B,
WHICH IS FINE, OR WHETHER THE
OTHER OPTION WAS JUST SIMPLY TO
HAVE THE ONE WHICH WAS SELECTED
AND THEN SAY "PLEASE ALSO SEE
THIS COMPANION PIECE."
SO EITHER OF THOSE WOULD WORK,
DEPENDING ON WHAT YOU FEEL WHEN
YOU'VE REVIEWED BOTH OF THE
PIECES TO SEE HOW THEY FIT
TOGETHER.
>> THANK YOU.
AND PAUL, DO YOU HAVE ANY
COMMENTS, GIVEN THAT YOU WERE
PART OF THAT DISCUSSION WITH DR?
>> THANKS FOR ASKING.
I DON'T HAVE A STRONG OPINION
HERE ON WHICH WAY TO GO.
IT'S VERY HELPFUL TO KNOW THAT
THERE WAS A PRECEDENT.
I DON'T EXACTLY KNOW WHAT THAT
PRECEDENT WAS, AND MAYBE IT
MAKES SENSE TO FOLLOW MOST
CLOSELY ALONG THE LINES OF WHAT
THE PRECEDENT WAS.
BUT I ALSO LIKE THE IDEA OF JUST
KEEPING THE ONE THAT WE VOTED ON
AND THEN MENTIONING THE OTHER
ONE IN A FOOTNOTE AS A COMPANION
PAPER, I THINK THAT ALSO MAKES
SENSE.
SO I'M OPEN TO THESE VARIOUS
POSSIBILITIES.
>> GREAT.
IT SOUNDS LIKE THE COMMITTEE
MIGHT BE OPEN TO EITHER OPTION
DEPENDING ON WHICH ONE MAKES
MORE SENSE, BUT I THINK IT WILL
TAKE A LITTLE BIT OF REVIEW FOR
US TO FIGURE THAT OUT.
ONCE THAT'S RESOLVED, THEN WE'LL
BE SENDING IT OUT TO YOU FOR
REVIEW, BECAUSE I THINK THE
DOCUMENT IS BASICALLY READY.
SO WITH THAT, I THINK WE WILL
CLOSE OUT THIS DISCUSSION.
AND NEXT WE'RE GOING TO TALK
ABOUT THE 2024 IACC STRATEGIC
PLAN UPDATE, WHICH IS OUR REPORT
ONCO-OCCURRING CONDITIONS, BOTH
PHYSICAL AND MENTAL HEALTH
CONDITIONS AND THEIR IMPACTS ON
HEALTH OUTCOMES.
AND RIGHT NOW ONAC IS COMPLETING
A DRAFT OF THIS REPORT USING
INFORMATION THAT WE GATHERED
THROUGH THE PREVIOUS WORKING
GROUP THAT WORKED ON THIS, AS
WELL AS OUR VERY ROBUST RFI THAT
HAD OVER 1200 RESPONSES FROM THE
COMMUNITY, AND DISCUSSIONS WE'VE
HAD HERE IN THE IACC AND A
COUPLE OF WORKSHOPS THAT WE
HELD, AND SO THIS WAS ALL BEING
WOVEN TOGETHER INTO A DRAFT AND
I'LL SHARE WITH YOU THE OUTLINE
OF HOW THAT DRAFT LOOKS.
SO OUR PLAN, GIVEN THAT WE'RE
NOT HAVING ANOTHER FULL
COMMITTEE MEETING, WOULD BE THAT
WHEN WE SEND IT -- WE'RE GOING
TO BE SENDING TO THE IACC FOR
REVIEW, AT THAT TIME, WE'LL POST
IT ON A WEBPAGE THAT IS DEVOTED
TO THIS REPORT, AND ALSO INCLUDE
INFORMATION ABOUT ALL THE OTHER
ACTIVITIES RELATED TO THIS
REPORT THAT WE'VE DONE SO FAR,
SO THAT THE PUBLIC CAN ALSO
ACCESS THE INFORMATION AT THE
SAME TIME.
AND I'LL GO THROUGH THE PROCESS
THAT WE HAVE PLANNED.
SO ONAC IS GOING TO REVISE THE
DRAFT REPORT BASED ON IACC
MEMBER FEEDBACK THAT WE'LL BE
COLLECTING THROUGH A SURVEY
DOCUMENT THAT WE'LL BE SENDING
YOU, AND THEN WE'LL DISTRIBUTE A
SECOND DRAFT TO YOU IN THE FALL
OF 2024.
AND OUR PLAN WOULD BE TO HAVE A
BRIEF 1 TO MAXIMUM 2 HOURS
VIRTUAL MEETING THAT WILL BE
SCHEDULED FOR FALL OF 2024 TO
DISCUSS THE REVISED DRAFT WITH
THE GOAL OF MAYBE TAKING SOME
FINAL COMMENTS THAT WE COULD
INCLUDE IN APPROVING THE REPORT.
HOW, IF YOU HAVE SO MANY
COMMENTS THAT WE CAN'T APPROVE
THE REPORT, WE CAN ALWAYS JUST
HAVE ANOTHER SHORT MEETING
LATER.
SO WE WILL KIND OF TRY TO BE
FLEXIBLE AROUND THAT.
BUT OUR GOAL WOULD BE HOPEFULLY
GETTING IT APPROVED THIS FALL.
AND ONCE WE HAVE ALL OF THE
FEEDBACK, WE'LL FINALIZE THE
REPORT AND TRY TO PUBLISH IT
WITHIN 2024 IF POSSIBLE.
WE DON'T WANT TO PASS IT ON TO
THE NEXT COMMITTEE.
SO TO GO OVER SOME OF THE
CONTENTS, WE HAVE AN
INTRODUCTION THAT GOES OVER THE
EPIDEMIOLOGY OF CO-OCCURRING
CONDITIONS, HEALTH DISPARITIES,
RECENT IACC ACTIVITY AND
INTEREST THAT RELATE TO
CO-OCCURRING CONDITIONS, AND
COMMUNITY PERCEPTIONS OF
RESEARCH AND SERVICES NEEDS THAT
ARE TAKEN FROM THE RFI ANALYSIS.
CHAPTER 1 IS ON PHYSICAL
CO-OCCURRING HEALTH CONDITIONS,
EPILEPSY, GI ISSUES AND
DISORDERS, SLEEP ISSUES AND
DISORDERS, SENSORY AND A MOTOR
CHALLENGES, EHLERS DANLOS
SYNDROMES AND DYSAUTONOMIA,
HEALTH IN OLDER ADULTS AND AGING
HEALTH-RELATED CONDITIONS.
AND FOR CHAPTER 2, WHICH IS
ONCOOCCURRING MENTAL HEALTH
CONDITIONS, IT INCLUDES ANXIETY
DISORDERS, ATTENTION DEFICIT AND
HYPERACTIVITY DISORDER,
DEPRESSION, OBSESSIVE COMPULSIVE
DISORDER, SELF INJURIOUS
BEHAVIOR, AGGRESSIVE BEHAVIOR
AND EMOTIONAL DYSREGULATION,
SUICIDALITY, AND ADDITIONAL
MENTAL HEALTH CONDITIONS SUCH AS
BIPOLAR, FEEDING DISORDERS,
GENDER DYSPHORIA, PATHOLOGICAL
DEMAND AVOIDANCE, SCHIZOPHRENIA,
SUBSTANCE USE DISORDER, TOURETTE
SYNDROME AND OTHER TIC DISORDERS
AND TRAUMA AND ADVERSE CHILDHOOD
EXPERIENCES, WHICH IS A WIDER
SCOPE OF ISSUES THAT WE HEARD
ABOUT THROUGH OUR RFI, SO WE'VE
EXPANDED IT FROM THE PREVIOUS
WORKING GROUP.
ALSO CHAPTER 3 WHICH WILL BE
ONCOOCCURRING INTELLECTUAL,
COMMUNICATION AND OTHER
DEVELOPMENTAL DISABILITY, AND
WILL INCLUDE INTELLECTUAL
DISANLT, COMMUNICATION
CHALLENGES, AND RELATED
DEVELOPMENTAL DISABILITIES SUCH
AS FRAGILE X, ARE THE ETT, PHE
PHELAN MACDERMID.
CONSIDERATIONS FOR INDIVIDUALS
WITH HIGH SUPPORT NEEDS,
REDUCING DISPARITY, AND THE
IMPACT OF COVID-19.
SO THIS IS JUST A VERY QUICK
SUMMARY OF HOW IT BEEN ORGANIZED
TO TRY TO COVER THE ISSUES THAT
WE'VE TALKED ABOUT HERE IN THIS
COMMITTEE THROUGH OUR WORKSHOPS
AND THE RFI AND OUR GOAL WAS TO
GIVE A NICE SUMMARY WITHOUT
MAKING IT SUPER LENGTHY BECAUSE
IF IT'S A 500-PAGE REPORT,
NOBODY WILL READ IT OR ONLY THE
MOST DEDICATED WILL TAKE THE
TIME TO READ THAT WHOLE REPORT,
SO WE'RE TRYING TO BE -- TRYING
TO COVER THE ISSUES WHILE ALSO
MAKING IT SOMEWHAT BRIEF AND
TRYING TO MAKE IT AS ACCESSIBLE
AS POSSIBLE.
SO WE'RE TRYING TO BALANCE THAT.
AND I SEE THERE ARE A COUPLE
QUESTIONS.
SO THE PLAN WOULD BE FOR
COMMITTEE MEMBERS TO RECEIVE ALL
THESE CHAPTERS FOR REVIEW ALONG
WITH A SURVEY TO FACILITATE
COLLECTION OF YOUR FEEDBACK AND
THEN FOR US TO MAKE REVISIONS.
SO WE EXPECT TO BE MAKING SOME
REVISIONS, IT'S NOT GOING TO BE
PERFECT ON THIS FIRST DRAFT BUT
THAT'S THE PLAN.
SO DENA, DO YOU HAVE A COMMENT?
>> I'M SORRY, CAN YOU GO BACK TO
THE VERY FIRST SLIDE?
>> INTRO?
>> YEAH.
OKAY.
I JUST WANTED TO -- I DON'T
KNOW.
I THINK I CAN MAKE MY COMMENTS
LATER.
I JUST WANTED TO CAPTURE -- THE
HEALTH DISPARITIES AREA THERE IN
TERMS OF COMMUNICATION, WE SAW
IT IN THE EARLIER COMMENTS THAT
CAME IN.
WE TEND TO THINK OF THIS AS
BEING A BINARY, A VERBAL AND
NON-VERBAL.
AND I CAN'T ARTICULATE MORE
FIRMLY HOW THE ARRAY OF
COMMUNICATION CHALLENGES
AUTISTIC PEOPLE FACE BECOME PART
OF THIS HEALTHCARE DISPARITY
ISSUE.
IF YOU HAVE SOME LANGUAGE,
PEOPLE EXPECT YOU TO NOT HAVE
ANY COMMUNICATION IMPAIRMENT.
IF YOU HAVE INTERMITTENT
COMMUNICATION CAPACITIES, PEOPLE
DON'T UNDERSTAND THAT, AND YOU
KNOW, SIMPLY HAVING TO PICK UP
THE PHONE TO CALL TO MAKE AN
APPOINTMENT CAN BECOME AN
ASTRONOMICAL CHALLENGE.
SO I JUST HOPE WE'RE BEING VERY
EXPLICIT IN THAT ARENA AROUND
COMMUNICATION IMPAIRMENT.
>> WE APPRECIATE THOSE COMMENTS.
YOU'LL HAVE A CHANCE ON THE
SURVEY TO LET US KNOW IF WHAT
WE'VE WRITTEN HAS NOT CAPTURED
CERTAIN ASPECTS AND WE CAN TRY
TO FILL IN THE GAPS.
>> THANK YOU SO MUCH.
>> THANK YOU.
I SEE THAT MATT SIEGEL HAS A
QUESTION, THEN WE'LL GO TO
JULIE.
>> THANKS, SUSAN.
CAN YOU GO BACK FOR A SECOND A
COUPLE SLIDES TO THE LIST OF
MENTAL HEALTH CONDITIONS?
>> OKAY.
LET ME GO -- THAT'S FORWARD.
>> SORRY, FORWARD.
YES.
SO I JUST WANTED TO SAY THAT IT
STICKS OUT TO ME THAT PATHOLOGIC
DEMAND AVOIDANCE IS UNLIKE
ALMOST ALL OF THE OTHER NAMED
CONDITIONS THERE IS NOT AN
OFFICIAL CONDITION RECOGNIZED IN
CURRENT DIAGNOSTIC LEXICONS,
DSM-V OR ICD11 AS FAR AS I KNOW,
AND SO I QUESTION, WHILE THERE
MAY HAVE BEEN FEEDBACK ABOUT IT,
I QUESTION IT BEING ON THIS LIST
AND NOT LOOKING TO HAVE A LONG
DISCUSSION HERE, BUT JUST NOTING
THAT I THINK THAT NEEDS FURTHER
REVIEW BECAUSE IT STICKS OUT AS
DIFFERENT FROM THE REST OF THE
LIST.
>> THANK YOU.
AND WE DEFINITELY WILL TAKE
FEEDBACK THROUGH THE SURVEY.
ONE OPTION, AND I RECOGNIZE WHAT
YOUR CONCERNS ARE THERE, IS TO
JUST ACKNOWLEDGE IT IN THE
SECTION THAT TALKS ABOUT THE
RFI.
WE DID HEAR FROM A LOT OF PEOPLE
ABOUT IT, SO WE COULD
ACKNOWLEDGE IT THERE AND NOT
HAVE A SECTION IN THIS SECTION
ABOUT THAT, BUT WE'LL SHARE WITH
YOU WHAT WE HAVE AND WELCOME
YOUR FEEDBACK AND CAN MAKE
ADJUSTMENTS.
SAM.
>> I WANT TO SECOND WHAT
DR. SIEGEL SAID.
I REALLY AM GRATEFUL HE POINTED
THAT OUT BECAUSE I GLOSSED RIGHT
OVER IT BUT IT IS ALSO SORT OF A
CONTROVERSIAL CATEGORY.
OH, IT'S A CONTROVERSIAL
CATEGORY OF -- WITHIN THE
AUTISTIC COMMUNITY, AND I THINK
THERE'S REAL THINGS THAT PEOPLE
ARE TALKING ABOUT THERE, BUT THE
FRAMEWORK AS DEMAND AVOIDANCE
VERSUS OTHER WAYS TO FRAME IT,
IT'S DEFINITELY UNDER ACTIVE
DEBATE.
I THINK SORT OF ACKNOWLEDGING IT
AS SOMETHING THAT PEOPLE BROUGHT
UP AND FLAGGING IT AS SOMETHING
THAT NEEDS MORE DISCUSSION, LIKE
MORE INVESTIGATION TO BETTER
FLESH OUT WHAT THIS IS AND ISN'T
AND WHETHER OR NOT IT'S A VALID
FRAMEWORK IS TOTALLY WARRANTED.
>> THANK YOU FOR THAT FEEDBACK.
ANY OTHER COMMENTS?
DID WE HAVE -- OH, JULIE.
>> WILL THERE BE ANY PLANS TO GO
BACK TO THE ORIGINAL WORKING
GROUP MEMBERS FROM THE LAST
CYCLE TO GET THEIR FEEDBACK ON
THE DRAFT AS WELL?
>> WE CAN DO THAT.
WE HAVEN'T -- WE DIDN'T WORK
THAT INTO THE PLAN GOING FORWARD
BUT WE COULD SEND IT BACK OUT.
I'D LIKE TO SEE THE IACC MAYBE
RESPOND TO IT FIRST AND TRY TO
REFINE IT, BUT IS THAT SOMETHING
THE IACC WOULD LIKE US TO DO?
TO TRY TO GO BACK TO THE
PREVIOUS WORKING GROUP?
FOR THOSE WHO MIGHT BE AVAILABLE
TO HELP US OUT.
>> AND, YOU KNOW, BECAUSE IT WAS
IN THE LAST CYCLE, SO WE HAD TWO
ONE-DAY -- ONE -- WERE THEY
SEPARATE?
TWO WORKSHOPS AND WE BROUGHT IN
INTERNATIONAL EXPERTS TO SORT OF
TALK TO US ABOUT IT, AND THEN
THERE WAS A TWO-DAY WORKSHOP ON
MENTAL HEALTH.
THAT WAS A LONG TIME AGO NOW, SO
IT MAY OR MAY NOT BE, YOU KNOW,
APPROPRIATE IS NOT THE RIGHT
WORD.
WE MAY OR MAY NOT DECIDE WE WANT
TO DO THAT BUT IT'S SOMETHING
THAT WE COULD THINK ABOUT.
>> AND OUR PLAN, OF COURSE, WAS
TO ACKNOWLEDGE THAT WORKING
GROUP FOR THEIR CONTRIBUTIONS TO
THIS AND BOTH COMMITTEES FOR
THEIR CONTRIBUTIONS.
SO DO PEOPLE HAVE A SENSE OF
WHETHER YOU'D LIKE FOR US TO ADD
A STEP OF HAVING THAT WORKING
GROUP TRY TO REVIEW THIS?
IS THERE A STRONG SENTIMENT THAT
YOU WANT US TO ADD THAT STUFF?
>> I DON'T THINK IT WOULD HURT
ANYTHING.
THIS IS DENA.
>> AND I DO THINK THERE WERE
PEOPLE FROM THE GROUP THAT CAME
TO THE WORKSHOPS THAT WERE
WONDERING KIND OF WHAT HAD COME
OF THAT.
>> RIGHT, RIGHT.
>> SO WE CAN SHARE IT BACK WITH
THEM, OF COURSE.
>> OF COURSE, YES, WE CAN SHARE
IT BACK WITH THEM.
SO WE CAN LOOK AT THE PROCESS
AND SEE IF WE WANT TO ADD A STEP
IN THERE TO HAVE THEM PROVIDE
SOME ADDITIONAL INPUT.
THINGS HAVE ALSO EVOLVED SINCE
THAT TIME, SO THERE MAY BE SOME
ADDITIONAL UPDATES.
WE TRIED TO LOOK THROUGH THE
LITERATURE FOR SOME RECENT
UPDATES TO TRY TO SUPPLEMENT
WHAT WE ALREADY HAD.
ANY OTHER COMMENTS FROM THE
COMMITTEE?
>> I JUST WANTED TO SAY I ALSO
THINK IT MAKES SENSE TO TRY AND
JUST KICK IT BACK FOR A SHORT
REVIEW.
>> WITH THE PREVIOUS WORKING
GROUP?
>> YEAH.
>> OKAY.
THANK YOU.
ALL RIGHT.
WE'LL SEE IF WE CAN WORK A STEP
IN THERE TO DO THAT TOO.
BUT I THINK WE'LL GET THE
COMMITTEE'S FEEDBACK FIRST SO WE
CAN TRY TO MAKE IT THE BEST
DRAFT WE CAN GET BEFORE WE DO
THAT.
>> AND I THINK WE COULD ALSO
GIVE THEM TARGETED INSTRUCTIONS
TO NOT SORT OF START OVER BUT I
THINK WE CAN SORT OF FOCUS IT
AROUND MAKING SURE THAT THE
UPDATES IN THEIR CONTENT AREA IN
TERMS OF SORT OF THE ADVANCES IN
THE LITERATURE OR KNOWLEDGE
SINCE THE TIME OF THE WORKSHOP
SORT OF REFLECTS THEIR
UNDERSTANDING OF THE UPDATES IN
THAT AREA, AND THEN WE CAN GET
MORE TARGETED FEEDBACK FROM THEM
AS OPPOSED TO LEAVING IT WIDE
OPEN FOR CHANGES OR EDITS.
>> EXACTLY.
AND UNDERSTANDING THAT EACH
SECTION CAN'T BE A AN ENTIRE
REVIEW OF THE ENTIRE FIELD
BECAUSE OTHERWISE IT WOULD BE
MAYBE A THOUSAND PAGE DOCUMENT
WHICH WE DON'T REALLY WANT TO
HAVE --
>> I LIKE THAT IDEA AND I THINK
THE ONLY OTHER WORD I'M GOING TO
THROW OUT IS TIMELINE, LIKE LOOK
AT YOUR TIMELINE AND SEE, IF
WE'RE TRYING TO GET THIS DONE
WITHIN A CERTAIN AMOUNT OF TIME,
IS THERE TIME TO DO THAT?
I HOPE THAT THERE IS.
BUT I THINK IT'S ALSO GOING TO
DEPEND ON THE FEEDBACK THAT YOU
GET BACK FROM US AS WELL.
SO A LOT OF MOVING PARTS, BUT
I'M NOT OPPOSED TO THEM LOOKING
AT IT.
>> WONDERFUL, THANK YOU.
SO THIS IS GOOD FEEDBACK.
WE'LL TAKE THIS ALL INTO
CONSIDERATION, SO YOU'LL BE
HEARING FROM US AND LIKE WE
SAID, WE WILL SHARE THE
DIFFERENT DRAFT ON THE WEB.
WE'LL CREATE A PAIM FOR IT SO
PAGE FOR IT ONTHE WEB SO THE PUP
UP WITH IT EVEN THOUGH WE WON'T
BE HAVING FULL COMMITTEE
MEETINGS.
ALL RIGHT.
READY TO MOVE ON TO THE NEXT
ITEM.
SO NEXT WE'RE GOING TO TALK
ABOUT THE 2024 IACC SUMMARY OF
ADVANCES.
IACC MEMBERS WILL DISCUSS
NOMINATIONS RECEIVED TO DATE AT
TODAY'S MEETING.
JUST A COUPLE OF REMINDERS, IACC
MEMBERS CAN CONTINUE TO NOMINATE
ARTICLES THROUGH THE END OF
2024.
SO YOU CAN SEND THEM TO US ON A
ROLLING BASIS.
WE'LL IT BE TO SEN CONTINUE TO U
REMINDERS ASKING FOR
NOMINATIONS.
IACC MEMBERS WILL RECEIVE A
BALLOT TO VOTE FOR THE TOP 20
ADVANCES IN JANUARY OF 2025,
WHICH WOULD BE WITHIN THE
EXTENSION PERIOD.
OF COURSE ASSUMING THAT THE
CARES ACT IS RE-AUTHORIZED.
AND WE ALSO WANTED TO ASK YOU IF
IACC MEMBERS MAY WISH TO HAVE A
BRIEF VIRTUAL MEETING IN JANUARN
OPPORTUNITY TO DISCUSS THE
NOMINATIONS BEFORE VOTING.
OKAY.
SO I JUST WANTED TO ASK YOU, ARE
YOU INTERESTED IN HAVING A BRIEF
VIRTUAL MEETING IN 2025 TO TALK
ABOUT THE NOMINATIONS?
YES, GO AHEAD.
AND YOU CAN RAISE YOUR HANDS ON
ZOOM TOO IF YOU'RE IN FAVOR OF
HAVING A VIRTUAL MEETING TO TALK
ABOUT NOMINATIONS?
OR IS THERE A POLL?
SORRY.
LOOKS LIKE THE MAJORITY IN THE
ROOM ARE INTERESTED.
AND I'M SEEING HANDS RAISED ON
ZOOM AS WELL.
I THINK THAT IT LOOKS LIKE WE'RE
PRETTY SAFE IN SAYING THAT THE
MAJORITY IS INTERESTED IN HAVING
A ZOOM MEETING TO TALK ABOUT
THAT.
SO WE CAN DO THAT.
AND SHELLI, I'M HEARING THE
RECOMMENDATION, GIVEN THAT WE'RE
OVER TIME, THAT WE COULD DEFER
DISCUSSION OF THE 2024
NOMINATIONS THAT HAVE BEEN
RECEIVED, OR WE COULD TRY TO
HAVE A BRIEF DISCUSSION.
WHAT WOULD THE COMMITTEE LIKE TO
DO?
SO WE HAD WHAT, 27, 28
NOMINATIONS?
28 NOMINATIONS THAT CAME IN.
WOULD YOU LIKE TO DISCUSS THAT
NOW BRIEFLY OR WOULD YOU LIKE TO
DEFER UNTIL WE MEET IN
POTENTIALLY JANUARY OR WE COULD
EVEN HAVE ANOTHER ZOOM MEETING.
>> I GUESS I WOULD SUGGEST THAT
IF WE'RE GOING TO MEET, THAT
WOULD -- AND WE WOULD HAVE A
MORE ROBUST LIST AT THAT TIME,
WE COULD CONSOLIDATE THAT
DISCUSSION.
>> OKAY.
DOES EVERYONE FEEL COMFORTABLE
WITH THAT IDEA DEFERRING?
WE'LL JUST CONTINUE TO TAKE IN
NOMINATIONS OVER THE TIME
PERIOD, SO PLEASE DO SEND US
NOMINATIONS.
WE WANT COVERAGE OF ALL SEVEN
AREAS OF THE STRATEGIC PLAN PLUS
THE TWO ADDITIONAL AREAS WE'VE
ADDED, SO PLEASE ADD ITEMS FROM
WITHIN YOUR EXPERTISE AND/OR
OTHER ITEMS OF INTEREST THAT YOU
RUN ACROSS IN YOUR WORK.
SO THEN WITH THAT, WE'RE NOT
DISCUSSING THAT.
OKAY.
SO I THINK THAT WE WILL BE ABLE
TO MOVE THEN TO OUR LUNCH.
SO THAT YOU ARE ON TIME FOR
LUNCH AND THEN WE WILL RECONVENE
AFTER THAT.
SO IT'S MY JOB TO WELCOME YOU
BACK FROM LUNCH.
HOPE YOU ALL HAD A NICE BIT OF A
BREAK.
AND WE'RE HAPPY TO NOW TURN TO
THE ORAL COMMENT SECTION OF OUR
MEETING TODAY, THE PUBLIC
COMMENT SECTION.
WE WILL START WITH ORAL
COMMENTS, AND FIRST ON THE LIST
IS JACKIE KANCIR.
>> HI.
THANK YOU FOR THE TIME TO SPEAK
ON BEHALF OF NCSA ON THE
CRITICALLISH YOU'VE CAREGIVING
FROM THE HIGHEST SUPPORT LENS.
OUR REALITY IS LIVING IN A
PERSISTENT STATE OF CRISIS.
WE FACE INTENSE BEHAVIORS THAT
REQUIRE -- ENTIRE FAMILY.
THE -- LEFT WHOLLY TO PARENTS
DUE TO HCVS WAIVERS THAT
PROMISED BUT NEVER DELIVERED.
OUR FOUNDER PERISHED IN A FIRE
SHE COULD HAVE ESCAPED.
SHE WAS FOUND WITH HER ARMS
WRAPPED AROUND HER SON.
WITH SEVERE AUTISM, HE COULD NOT
BE CONVINCED TO FLEE.
THE RECENT MOVEMENTS IN
CAREGIVER SUPPORT ARE
ENCOURAGING.
MOST ARE TARGETED AT SENIORS
REQUIRING ON AVERAGE CARE LESS
THAN FIVE YEARS.
THE CAREGIVERS I REPRESENT MAY
SERVE THIS ROLE FOR FIVE DECADES
OR MORE IN CONSTANT SURVIVAL
MODE.
SOME SAY YOU CAN'T POUR FROM AN
EMPTY CUP, BUT THEY DO.
THEY MUST FILL THE ROLE OF AN
ENTIRE BIOPSYCHOSOCIAL
MULTIDISCIPLINARY TEAM FOR
DECADES ON END, YET THEY STAND
UTTERLY ALONE OVER PILES OF
DENIALS.
AND THEN THEY'RETIONED FROM THEM
SHARING THEIR AUTHENTIC
REALITIES.
WE RECOMMEND AUTHORIZING A
REPORT AND DEVELOP A STRATEGIC
PLAN OUTLINING THE SOLUTIONS TO
SECURE THE WELL-BEING OF FAMILY
CAREGIVERS INCLUDING DISTINCT
ANALYSIS WITH A PROFOUND AUTISM
POPULATION.
EXPLORE CAREGIVER PHYSICAL AND
MENTAL HEALTH, FINANCIAL
STABILITY, EDUCATIONAL AND
VOCATIONAL OPPORTUNITIES, AND
FOOD AND HOUSING SECURITY.
WE ALSO URGE IACC TO SECURE
SEATS FOR PARENTS WITH
EXPERIENCE IN THIS UNIQUE WORLD
WHO ARE VERY LOW ADAPTIVE
FUNCTIONING COLLIDES WITH
INTENSE AND OFTEN DANGEROUS
BEHAVIORS.
A WORLD NO ONE SHOULD BE LEFT TO
NAVIGATE ALONE.
IN HER LAST INTERVIEW SHORTLY
BEFORE THE FIRE, SHE SAID, I
QUOTE, I DIDN'T WANT PARENTS TO
SUFFER LIKE I DID.
I JUST DIDN'T WANT ONE MORE MOM
OR DAD TO GO THROUGH WHAT I WENT
THROUGH.
NCSA CARRIES HER VOICE WITH US.
THANK YOU.
>> THANK YOU VERY MUCH, JACKIE,
FOR SHARING.
AND NEXT UP IS AMANDA LOPEZ FROM
SAM'S SIBS STICK TOGETHER.
>> GOOD AFTERNOON.
MY NAME IS AMANDA LOPEZ.
I'M A SPEECH LANGUAGE
PATHOLOGIST WORKING AT THE
AUTISM FOUNDATION IN JUPYTER,
FLORIDA AND I'M A PANELIST ON
SAM'S SIBS STICK TOGETHER.
I'M REQUESTING TO SPEAK WITH YOU
ABOUT THE NEEDS ABOUT SIBLINGS
LIKE MY SE. MY EARLIEST MEMORIES
AFTER MY BROTHER -- YOUNGER ME
KNEW WHEN MY PARENTS NO LONGER
COULD SUPPORTING AND ADVOCATING
FOR JUROR GEE WOULD BE MY ROLE.
IT'S A LOT FOR A CHILD TO THINK
ABOUT BUT NOT UNCOMMON FOR
SIBLINGS LIKE ME.
THE SAM SIBS STICK TOGETHER ROOM
BEGAN AS A VIRTUAL SIBLING
SUPPORT GROUP DEVELOPED
ESSENTIALLY OVERNIGHT AT THE
START OF THE COVID-19 PANDEMIC.
DR. KIMBERLY RAVICHIO AND
DR. AARON BURG WITS SAW THE NEED
TO SUPPORT SIBLINGS.
THE GROUP BEGAN AND CREATED A
SPACE FOR SCHOOL AGE SIBLINGS TO
MEET AND TALK ABOUT THEIR SHARED
EXPERIENCES.
SHE WELCOMED ADULT PARTICIPANTS
TO JOIN AND SHARE THEIR
EXPERIENCES.
I WAS ONE OF THEM.
THINKING BACK I HAD NEVER MET
ANOTHER CHILD MY AGE WITH AN
AUTISTIC SIBLING LET ALONE LIKE
MY BROTHER.
AND IT WAS SO SPECIAL TO SEE IN
THIS WELCOMING THOUGHTFUL SPACE
THESE KIDS HAD THE OPPORTUNITY
TO SPEAK FREELY, ASK QUESTIONS,
AND LISTEN TO EACH OTHER, SHARE
EXPERIENCES ONLY THEY COULD
RELATE TO.
SHORTLY AFTER IN COLLABORATION
WITH ALISHA HOLIDAY AND THE
AUTISM SCIENCE FOUNDATION, A
WEBINAR SERIES MODERATED BY
SAMANTHA WAS LAUNCHED.
ADULT SIBLINGS WERE INVITED TO
JOIN IN DISCUSSIONS ABOUT THE
SIBLING EXPERIENCE AND THE
SERIES BEGAN WITH PAMMISTS
TALKINGPANELISTSTALKING ABOUT TT
GREW TO INCLUDE RESEARCH
SURROUNDING THE SIBLING
RELATIONSHIP, TRANSITION
PLANNING, AND I FOUND AS I'VE
GROWN UP AS A SIBLING, MY NEEDS
HAVE EXPANDED.
I'M NOW CONSIDERING FUTURE
PLANNING AS SOMETHING THAT NEEDS
TO BE DONE RATHER THAN TALKED
ABOUT.
I'M CONSIDERING THE PLANS THAT I
HAVE FOR MY BROTHER, ALONG WITH
CARING FOR AGING PARENTS.
AND I NEED SUPPORT IN A
DIFFERENT WAY THAN I DID.
CURRENTLY I'M FACILITATING AN
ADULT SIBLING SUPPORT GROUP WITH
THE GUIDANCE OF DR. RAVICHIO AND
IN OUR FIRST MEETING WE
DEVELOPED GOALS.
I WANT TO SHARE SOME WITH YOU
ALL.
ONE, SHARE IN THE COMMON JOYS
AND CONCERNS THAT ARE UNIQUE TO
THE SIBLING RELATIONSHIP.
PROVIDE A SAFE SPACE TO SHARE
AND SUPPORT ONE ANOTHER, AND TO
LEARN MORE.
LEARN HOW TO TAKE ON THAT
CAREGIVER ROLE AND HOW TO
PREPARE FOR THE FUTURE.
FINAL GOAL SPEAKS TO ONE OF THE
SUBJECTS OF TODAY'S MEETING,
FAMILY CAREGIVING.
MANY SIBLINGS ARE AWARE AT AN
AGE YOUNGER THAN YOU MAY THINK
THAT ONE DAY THEY WILL BE THE
PRIMARY CAREGIVER OF THEY'RE
SIBLING.
THEIR
SIBLING.
IT'S DIFFICULT TO FIND RESOURCES
AND SUPPORT THAT GIVE QUALITY
INFORMATION ABOUT HOW WE GET TO
THAT POINT.
SO CLOSE PARTNERSHIP WITH THE
AUTISM SCIENCE FOUNDATION HAVE
CREATED AN INCLUSIVE WEBSITE,
SAM'S SIBS STICK TOGETHER, AND
IT OFFERS RESOURCES ON STRESS
MANAGEMENT, TRANSITION
INFORMATION, AND IT HOUSES
QUALITY UP TO DATE RESEARCH
ABOUT THE SIBLING EXPERIENCE.
ALL WEBINARS SINCE ITS LAUNCH
ARE RECORDED AND AVAILABLE, AND
WE REALLY WANT TO MAXIMIZE OUR
EFFORTS TO PROVIDE SUPPORT TO
SIBLINGS IN A SPACE WHERE THEY
CAN ACCESS QUALITY INFORMATION
AND JOIN IN ON THESE CRUCIAL
CONVERSATIONS.
I WANT TO WELCOME ANY ADULT
SIBLING THAT WOULD LIKE TO JOIN
THE SUPPORT GROUP I'M CURRENTLY
FACILITATING.
YOU ARE WELCOME ANY TIME.
REGISTRATION IS ROLLING AND YOU
CAN FIND THE REGISTRATION LINK
ON THE HOME SCREEN OF SAM'S SIBS
STICK TOGETHER.COM.
I'M THRILLED TO SEE THE WORLD
RECOGNIZE THE UNIQUE NEEDS AND
STRENGTHS OF SIBLINGS AND THE
SUPPORT WE NEED.
THANK YOU.
>> THANK YOU, AMANDA, FOR
JOINING US.
NOW I'LL TURN IT OVER TO ONI FOR
THE WRITTEN COMMENTS.
>> GOOD AFTERNOON, EVERYONE.
WE RECEIVED 58 WRITTEN PUBLIC
COMMENTS ON THE FOLLOWING
TOPICS.
WE RECEIVED 47 COMMENTS, I'M
SORRY, ON THE EXPERIENCES OF
FAMILY CAREGIVERS AND THE NEEDS
OF AUTISTIC INDIVIDUALS WITH
HIGH SUPPORT NEEDS.
AND THE NAMES OF THOSE
COMMENTERS ARE LISTED ON THE
SLIDE.
WE RECEIVED SIX COMMENTS ON THE
TOPIC OF RESEARCH AND SERVICE
NEEDS, RESOURCES AND POLICY
IMPLICATIONS.
ONE COMMENT ON THE TOPIC OF
INCLUSION OF AUTISTIC
PERSPECTIVES AND RESEARCH.
TWO COMMENTS ON THE ROLE OF THE
IACC AND THE FEDERAL GOVERNMENT.
AND TWO COMMENTS ON THE TOPIC OF
POTENTIAL CAUSES OF AUTISM.
THE FULL PACKET OF PUBLIC
COMMENTS IS AVAILABLE ON OUR
WEBSITE.
AT THE LINK LISTED ON THE SLIDE.
>> THANK YOU, ONI.
SO NOW WE WANT TO OPEN IT UP TO
ALL OF YOU IF THERE ARE COMMENTS
OR RESPONSES TO ANYTHING THAT
YOU'VE HEARD TODAY.
DENA, I SEE YOUR HAND UP.
SUSAN, YOU'LL HAVE TO HELP WITH
WHO'S IN THE ROOM.
>> HI, THANK YOU SO MUCH.
I DID WANT TO MENTION, AND I'M
SORRY AGAIN I'M MULTITASKING,
BUT THE SECOND SPEAKER, IF
YOU'RE UNAWARE OF IT, THE ARC US
ALSO HAS A NATIONAL SIBLING
COUNCIL, AND I SEE AN
OPPORTUNITY FOR GREAT
COLLABORATION THERE.
SO I JUST WANTED TO MENTION
THAT.
AND THEN I DID WANT TO REITERATE
SOMETHING THAT CONTINUES TO BE A
MISCOMMUNICATION,
MISUNDERSTANDING, BUT THERE ARE
SEVERAL MEMBERS OF THE CURRENT
IACC WHO HAVE DIRECT PARENTING
EXPERIENCE OF CARING FOR PEOPLE
WHO HAVE HIGH SUPPORT NEEDS.
I'M AFRAID PEOPLE ARE GETTING
THE IDEA THAT THERE'S
INSUFFICIENT REPRESENTATION FOR
PEOPLE WITH HIGH SUPPORT NEEDS,
BUT SEVERAL OF OUR MEMBERS ARE
GOING TO BE SPEAKING THIS
AFTERNOON, AND THEY ALSO
REPRESENT THE NEEDS OF HIGH
SUPPORT DEMAND PERSONS.
SO I JUST WANT TO MAKE SURE THE
PUBLIC IS AWARE THAT WE DO HAVE
CONSIDERABLE REPRESENTATION OF
AN ARRAY OF AUTISM NEEDS
REPRESENTED BY DIRECT CAREGIVING
EXPERIENCE ON THE COMMITTEE.
LASTLY, I DID WANT TO SAY THAT
AS I REVIEWED THE PUBLIC
COMMENTS, I JUST WANT TO
EMPHASIZE AS WE GO FORWARD THAT
WE REMEMBER THE UNIQUE
CAREGIVING NEEDS OF OTHER
AUTISTIC PARENTS.
SO MUCH OF THIS IS BEING
COMMUNICATED AS THOUGH IT'S A
BINARY, AS THOUGH IT'S PARENTS
WHO ARE NON-DISABLED PARENTING
DISABLED KIDS.
AND I'M HERE TO SAY AS ONE OF
THOSE PARENTS THAT, YOU KNOW,
THE COMMUNICATION BARRIERS WE
FACE, THE ADMINISTRATIVE BURDEN
WE FACE NAVIGATING SYSTEMS, THE
DEMAND FOR SOCIAL ENGAGEMENT AND
IEP MEETINGS IS AN EXAMPLE IS
NOT UNLIKE THE BURDEN THAT OTHER
PARENTS CARRY IN TERMS OF
NAVIGATING SYSTEMS, BUT WE'RE
DOING IT WITH AN 80-POUND BAC
PAC ON.
WE'RE DOING IT WITH A LOT MORE
COGNITIVE EFFORT.
SO I JUST HOPE GOING FORWARD
THAT WE CAN CONTINUE TO
PRIORITIZE THE ADDITIONAL NEEDS
OF PARENTING WHILE DISABLED.
THANKS.
>> THANK YOU, DENA.
OTHER COMMENTS OR QUESTIONS?
>> WE HAVE A COMMENT IN THE
ROOM.
SAM CRANE.
>> THIS IS PROBABLY NOT GOING TO
BE MY ONLY COMMENT.
BECAUSE I WANT US TO SORT OF GET
INTO OTHER TOPICS TOO, BUT
BEFORE WE SORT OF MOVE ON TO,
YOU KNOW, WHILE WE'RE TALKING
ABOUT THE TOPICS THAT DENA WAS
MENTIONING, I WANTED TO REALLY
HIGHLIGHT ONE OF THE COMMENTS
THAT I THINK GOT BURIED AND IT'S
AN ISSUE THAT'S VERY IMPORTANT
TO ME, WHICH IS THE LACK OF
AVAILABILITY OF LEGAL
REPRESENTATION TO PEOPLE WHO
DON'T PEEK BUT SPEAK BUT ARE INY
SETTINGS.
THE PROTECTION AND ADVOCACY DOES
HAVE THE ABILITY TO SERVE PEOPLE
WHO DON'T SPEAK WHO ARE
EXPERIENCING ABUSE AND NEGLECT
IN INSTITUTIONAL SETTINGS.
BUT NOW THAT WE ARE SEEING MORE
AND MORE PEOPLE IN THE
COMMUNITY, WHICH IS A REALLY
GOOD THING, IT'S REALLY
IMPORTANT THAT THE PROTECTION
AND ADVOCACY SYSTEM BE GIVEN THE
ABILITY TO VISIT COMMUNITY-BASED
SETTINGS AND THE MANDATE TO
VISIT COMMUNITY-BASED SETTINGS
FOR SITUATIONS WHERE SOMEONE IS
NON-SPEAKING, NOT ABLE TO
COMMUNICATE VERBALLY AND MIGHT
NOT OTHERWISE BE ABLE TO CONTACT
THE PNAs.
I KNOW IT MAKES PERFECT SENSE TO
ME THAT THE PNAs SHOULD IN
GENERAL BE RESPONDING TO THE
NEEDS OF PEOPLE -- YOU KNOW, THE
PERSON WITH A DISABILITY AS A
DIRECT CLIEN CLIENT AND MAKING E
THAT THE PERSON WITH A
DISABILITY EXPRESSES INTEREST IN
HAVING HELP, BUT THAT'S NOT
USUALLY A REQUIREMENT FOR
VISITING, MONITORING FOR ABUSE
AND NEGLECT IN INSTITUTIONAL
SETTINGS, WHICH IS SOMETHING
THAT THE PNAs HAVE.
THE MANDATE
TO DO, AND I THINK IT IS
IMPORTANT THAT WE HIGHLIGHT THAT
THEY NEED TO BE EMPOWERED TO DO
THAT IN GROUP HOMES AND
COMMUNITY-BASED SETTINGS TOO.
>> THANK YOU, SAM.
MORE COMMENTS FROM THE
COMMITTEE?
IN THE ROOM, AND THEN SHELLI IS
ALSO LOOKING ON ZOOM.
IVANOVA?
>> I'D LIKE TO THANK THE SAM'S
SIBS FOR THE COMMENTS.
I THINK SIBLINGS ARE REALLY
IMPORTANT.
I JUST HAVE A QUESTION IF
THEY'RE STILL AROUND, IS WHAT
ARE SOME WAYS THAT YOU HELP
SIBLINGS, BOTH THE DISABLED
SIBLING AND NON-DISABLED SIBLING
KEEP THAT HEALTHY SIBLING
RELATIONSHIP, AND NOT LET
CAREGIVING BECOME SOMETHING THAT
MAKES THE SIBLING RELATIONSHIP
TORN, LIKE, YOU KNOW, HOW DO YOU
HELP -- HOW DO YOU HELP SIBLINGS
SUPPORT EACH OTHER, STILL SEEING
EACH OTHER AS SIBLINGS, AND HELP
WITH THAT POWER DYNAMIC THAT CAN
HAPPEN AND CAN CAUSE A RIFT IN
SIBLING AND FAMILY
RELATIONSHIPS?
THANK YOU.
>> IF AMANDA IS STILL AROUND,
YOU CAN FEEL FREE TO RESPOND.
I THINK THAT SHE MAY HAVE LOGGED
OFF.
JULIE HAS HER HAND UP IN THE
ROOM.
>> SCOTT, HAVE YOU HAD YOUR HAND
UP FOR A LITTLE WHILE?
I'LL LET YOU GO FIRST IF YOU'D
LIKE.
OH.
ALL I WANT TO DO IS JUST AMPLIFY
ONE OF THE COMMENTS HERE THAT I
THINK WE'VE TALKED ABOUT A LOT
IN THIS COMMITTEE SO IT'S NOT
GOING TO BE ANY SURPRISE TO
ANYBODY HERE IN THIS ROOM, BUT I
JUST WANTED TO TALK ABOUT THE
BASIS AND SHORTAGE OF DIRECT
SUPPORT PROFESSIONALS FOR PEOPLE
WITH ALL DISABILITIES BUT ALSO
FOR PEOPLE WHO ARE AUTISTIC,
AUTISTIC PEOPLE.
AND THE TURNOVER THAT WE SEE IN
OUR FAMILIES AMONG DIRECT
SUPPORT PROFESSIONALS, PEOPLE
WHO ARE ABLE TO GET DIRECT
SUPPORT PROFESSIONALS INTO THEIR
HOMES, THE TURNOVER AND HOW THAT
CAN REALLY NEGATIVELY IMPACT THE
LIVES OF AUTISTIC PEOPLE, AND
THAT -- THE LOW PAY THAT A LOT
OF THESE PEOPLE ARE EXPERIENCING
AS A REAL REASON FOR THAT.
SO WE'VE TALKED ABOUT THIS
BEFORE, AND I'M SURE WE'LL TALK
ABOUT IT AGAIN, BUT IT CAME UP
IN A COUPLE OF THE COMMENTS SO I
JUST WANTED TO TAKE THE
OPPORTUNITY TO REALLY AMPLIFY
THAT AND SAY THAT THAT CONTINUES
TO BE A CRISIS AND THAT AUTISTIC
PEOPLE ARE GOING TO HAVE A HARD
TIME LIVING THEIR FULL LIVES IN
THE COMMUNITY AND REALLY
REACHING THEIR POTENTIAL IF WE
DON'T HAVE PEOPLE WHO ARE NOT
FAMILY MEMBERS TO BE ABLE TO
SUPPORT THEM IN DOING THAT.
SO I DON'T KNOW IF THIS IS
SOMETHING THAT OUR COMMITTEE CAN
CONTINUE TO REALLY BE THINKING
ABOUT IN THE NEXT ITERATION OF
THE IACC, BUT IT'S SUCH AN
IMPORTANT TOPIC AND IT REALLY
LIMITS QUALITY OF LIFE FOR A LOT
OF PEOPLE TO NOT HAVE ACCESS TO
HIGH QUALITY OR CONSISTENT
DIRECT SUPPORT PROFESSIONALS.
>> CAN I JUST PIGGY BACK ON
THAT, JULIE, S TO SAY WE'RE
LOOKING AT A TREMENDOUS NUMBER
OF PEOPLE WHO GET PULLED OUT OF
THE WORKFORCE, PRIMARILY MOTHERS
BUT A LOT OF CAREGIVERS, BECAUSE
WE DON'T HAVE ACCESS TO GOOD
CONSISTENT DAY SERVICES AND
DIRECT SUPPORT PERSONNEL.
>> THANK YOU.
SCOTT?
>> YEAH, I JUST WANTED TO SAY, I
CONCUR WITH THOSE THOUGHTS AS
FAR AS COMMUNITY-BASED SUPPORTS,
ENHANCING IN THAT AREA.
WHICH IS ALSO INTERRELATED TO AS
A SOCIAL DETERMINANT OF HEALTH
TO GREATER HEALTH AND WELL-BEING
AND TO INDEPENDENT LIVING AND
EMPLOYMENT TOO FOR OUR END OF
THINGS IS THAT FOLKS WHO HAVE
BETTER COMMUNITY-BASED SUPPORTS
HAVE GREATER QUALITY OF LIFE AND
ABLE TO HAVE EMPLOYMENT ACCESS
THAT FITS THEIR INTERESTS, NEEDS
AND TALENTS AND SKILLS AND HAVE
CAREER DEVELOPMENT THAT WORKS
WELL.
I ALSO WANT TO CONCUR WITH SAM'S
COMMENT AS FAR AS ON THE
COMMUNICATION END OF THINGS,
THAT'S SOMETHING I'VE BEEN
TRYING TO EMPHASIZE, IS ACCESS
TO ALTERNATIVE AUGMENTIVE
COMMUNICATION SYSTEMS DEVICES
ACROSS MANY DIFFERENT LIFE AREAS
FOR EMPLOYMENT AND OTHER AREAS
THAT ALLOW FOLKS TO HAVE FULL
ACCESS AND OPPORTUNITY AND I
THINK THAT'S NOT ALWAYS
EMPHASIZED AS MUCH, AND
SOMETIMES IT'S BECAUSE FOLKS WHO
MAY HAVE DIFFERENCES IN
COMMUNICATION OR MAY BE
NON-SPEAKING OR JUST HAVE A
VARIETY OF DIFFERENT
COMMUNICATION MEANS MAY NOT
ALWAYS BE FULLY REPRESENTED IN
THE ROOM IN SCIENTIFIC STUDIES,
IN PAPERS, REPORTS, ET CETERA,
AND SO I THINK IT'S UP TO ALL OF
US TO EMPHASIZE THAT AS SORT OF
THE DIVERSITY AND COMPLEXITY IN
TERMS OF AN AWESOME LIVED
EXPERIENCE.
JUST BRIEFLY I WANTED TO ALSO
APPRECIATE THE COMMENTS THAT
WERE IN THE PUBLIC WRITTEN
COMMENTS ABOUT EMPLOYMENT ACCESS
INCLUDING KERRY BERGER, AND THEN
THERE WAS A COMMENT FROM ASN
INCLUDING MENTIONING I DON'T
KNOW IF THIS IS THE SAME BUT OUR
OWN PROJECT, RESEARCH SUPPORT
SERVICES FOR EMPLOYMENT, WE'RE
STRIVING DO MORE AS WE CAN SO WE
APPRECIATE ALL THE INPUT WE CAN
GET FROM CONSTITUENTS, IT'S
ALWAYS VALUABLE FOR US AND
EXPLORING HOW WE CAN IMPROVE
BETTER ACCESS TO EMPLOYMENT,
HIGH QUALITY OF LIFE.
THANKS.
>>
>> ARE YOU SEEING ANYTHING ON
ZOOM, SHELLI?
>> I AM NOT.
>> OKAY.
HERE IN THE ROOM, JALYNN?
>> FOR THOSE OUT THERE, THIS IS
JALYNN PRINCE.
I'VE HAD A VERY COMPLICATED
SITUATION WITH CAREGIVING
THROUGH OUR FAMILY, AND TO DO A
CONSOLIDATED VERSION OF THIS.
MY MOM TURNED 80 ONE WEEK AFTER
OUR YOUNGEST CHILD WAS BORN.
SO WE HAD AN 80-YEAR SPAN PLUS
TWO TEENAGERS, A HUSBAND, AND
MYSELF, ALL IN ONE HOUSEHOLD.
AND MY MOM, WHO HAD TURNED 80
JUST AT THE TIME THAT MADISON
WAS BORN LIVED WITH US UNTIL SHE
WAS 94.
SO THERE WERE SO MANY DIFFERENT
TYPES OF DEMANDS AND SO MANY
THINGS THAT I'VE SEEN BOTH WITH
SIBLINGS AND OUR CHILDREN'S
ASSOCIATES AND FRIENDS THAT ALSO
HAVE SIBLINGS ON THE SPECTRUM,
THAT I THINK SOMETIMES IT'S
EXPECTED THAT THE SIBLING WOULD
STEP FORWARD AND BE THE
CAREGIVER.
AND IN MANY SITUATIONS, THAT IS
ADMIRABLE, IT IS THE RIGHT
THING, BUT SOMETIMES WE NEED TO
UNDERSTAND WHAT THE OTHER FAMILY
MEMBERS HAVE GIVEN UP, NOT
BECAUSE OF THEIR CHOICE.
MY HUSBAND AND I DECIDED TO HAVE
ANOTHER CHILD.
OUR CHILDREN DIDN'T DECIDE THAT.
BUT THEIR LIVES WERE IMPACTED.
IT MAY SOUND SUPERFICIAL IN A
WAY, BUT BIRTHDAY PARTIES WERE
IMPACTED, HOLIDAYS WERE
IMPACTED.
VACATIONS WERE LIMITED.
THINGS WERE CHANGED BECAUSE OF
THE PERSON WITH THE HIGHEST
NEEDS.
AND WE DID SO LOVINGLY AND
CARINGLY, BUT THERE HAS BEEN A
SACRIFICE THAT IS OFTEN MADE BY
SIBLINGS, AND WHEN THEY MOVE
FORWARD AND THEY HAVE THEIR OWN
CHILDREN, IF THEY'RE TAKING CARE
OF THEIR UNCLE, HOW CAN THEY
NECESSARILY TAKE CARE OF THEIR
CHILDREN BECAUSE THOSE ARE THEIR
CHILDREN AND THEY DESERVE A
FUTURE TOO.
SO THE IDEA OF WHAT YOU WERE
MENTIONING ABOUT HAVING
ADDITIONAL TRAINED AND CAPABLE
CAREGIVERS IN LINE BECAUSE IF
THERE'S A SINGLE SIBLING AND
SOMETHING HAPPENS TO THEM, WHAT
HAPPENS?
SO IT A COMPLEX STORY, AND IT
GOES ON IN MANY DIFFERENT WAYS
THAT WE DON'T SEE WHEN WE SEE
THE FRONT DOOR OF OUR NEIGHBORS
WHO ARE LIVING WITH AUTISM, WHAT
THE COMPLICATIONS ARE, WHAT THE
IMPLICATIONS ARE, AND IT CAN GO
ON FOR GENERATIONS.
AND WE DO WANT TO HOPE THE BEST
AND PROVIDE THE BEST FOR OUR
LOVED ONES WHO ARE AUTISTIC.
THAT'S NOT THE QUESTION.
BUT THERE'S A LOT OF OTHER LIVES
ASSOCIATED WITH IT.
THANK YOU.
>> AND WE ALSO HAD YETTA IN THE
ROOM WITH A COMMENT.
>> SO AS ALWAYS, I'D LIKE TO
THANK THOSE WHO PROVIDED ORAL
COMMENTS AND WRITTEN COMMENTS,
TO IACC.
I THINK IT'S SO VERY IMPORTANT
FOR YOU ALL TO SHARE YOUR
INDIVIDUAL STORIES AND
EXPERIENCES.
IT REALLY HELPS TO INFORM THE
WORK THAT WE ARE DOING.
A LOT OF COMMENTS IN HERE, YOU
SAW THE NUMBERS OF FOLKS WHO
HAVE SHARED THEIR EXPERIENCE
ABOUT FAMILY CAREGIVING, MANY OF
WHICH WHEN YOU READ THE STORIES
AND I IMPLORE FOLKS WHO MIGHT
NOT BE IACC MEMBERS TO TAKE TIME
TO READ THROUGH THESE COMMENTS
AND FIND THE THREADS AND FIGURE
OUT HOW IN YOUR OWN COMMUNITIES
YOU CAN BE ADVOCATING.
YES, WORK NEEDS TO BE DONE.
WE HAVE THESE CONVERSATIONS
EVERY TIME WE MEET, THINGS ARE
MOVING BUT IT TAKES TIME, RIGHT?
AND SO THE WAY THINGS MOVE IS BY
US TELLING OUR STORIES AND BY US
ADVOCATING AND I JUST THINK IT'S
SO VERY IMPORTANT FOR PEOPLE TO
BE ACKNOWLEDGED FOR, YOU KNOW,
WHAT THEY'RE DOING AS AUTISTIC
INDIVIDUALS TO ADVOCATE AND TO
WORK EVERY DAY TO BE FUNCTIONAL
PARTS OF SOCIETY, TO BE ACCEPTED
INTO SOCIETY BECAUSE THE REALITY
IS THE WORLD IS NOT BUILT FOR
THEM, AND I SAY THAT AS SOMEONE
WHO IS THE MOTHER AND YOU'LL
HEAR ME SPEAK LATER OF A
20-YEAR-OLD WHO IS DIAGNOSED
WITH AUTISM, ADHD AND
INTELLECTUAL DISABILITY, RIGHT?
I DON'T HAVE HIS EXPERIENCE BUT
I'M HELPING HIM TO NAVIGATE, AND
IT'S CHALLENGING WHEN PEOPLE
JUST DON'T UNDERSTAND, YES, WE
HAVE COME A LONG WAY, BUT THERE
IS SO MUCH MORE WORK TO BE DONE
AND I'VE SAID THAT BEFORE, I'M
GOING TO CONTINUE TO SAY THAT,
RIGHT, BUT EACH OF US, RIGHT,
EACH INDIVIDUAL, ALL OF US
COMING TOGETHER AND SHARING OUR
STORIES AND DOING THIS WORK IS
GOING TO MAKE A DIFFERENCE.
SO I JUST WANTED TO UPLIFT AND
THANK EVERYONE FOR SHARING THEIR
STORIES, BECAUSE IT IS MAKING A
DIFFERENCE.
I KNOW WHEN YOU'RE IN HERE DAY
TO DAY, IT MAYBE SEEMS
IMPOSSIBLE, BUT I WANT TO
ACKNOWLEDGE YOU AND THANK YOU.
>> ANY OTHER COMMENTS IN THE
ROOM?
IT DOESN'T SEEM LIKE ANYTHING ON
ZOOM.
SO WE'LL DO TOM AND THEN
IVANOVA.
>> I CAN GO VERY QUICK.
TO THE SUPPORT PROFESSIONAL
CRISIS ISSUE, I THINK -- OH,
SORRY.
THE THE SUPPORT PROFESSIONAL
CRISIS ISSUE, I THINK A ROLE
IACC CAN PLAY IS TO GUIDE US --
I DON'T THINK WE HAVE SUFFICIENT
RESEARCH TO UNDERSTAND WHAT ARE
THE CHARACTERISTICS OF
INDIVIDUALS THAT DO MAINTAIN
EMPLOYMENT IN THOSE SETTINGS?
WHAT KEEPS THEM EMPLOYED?
HOW DO WE BEST ORIENT THEM?
HOW DO WE MAKE SURE THAT THOSE
INDIVIDUALS FEEL COMFORTABLE
WORKING WITH THE FAMILY AND THE
OTHER CAREGIVERS IN THAT ROLE,
BECAUSE THAT'S A REALLY
COLLABORATIVE PROCESS THAT I'VE
EXPERIENCED OBVIOUSLY
PERSONALLY, BUT ALSO
PROFESSIONALLY, AND I THINK
THERE'S A LOT FOR US TO
UNDERSTAND THERE FROM A RESEARCH
PERSPECTIVE BUT THEN ALSO
THERE'S A TON OF SERVICES AND
SUPPORT STUFF THAT NEEDS TO
HAPPEN IN ORDER TO IMPROVE THAT
CRISIS BECAUSE IT IS REALLY A
CRISIS.
>> THANK YOU.
THEN IVANOVA.
>> I WANT TO GIVE UNDERSTANDING
AND SOLIDARITY TO PEOPLE WHO ARE
IN CRISIS AND FAMILIES WHO ARE
STRUGGLING.
I THINK THAT WE REALLY NEED TO
ADVOCATE FOR BETTER SERVICES IN
THE COMMUNITY FOR PEOPLE TO GET
SUPPORTS OUTSIDE OF THEIR FAMILY
AS WELL, SO THAT PEOPLE START
CONNECTING WITH PEOPLE IN THE
COMMUNITY OUTSIDE OF FAMILY AND
GAIN THOSE NATURAL FRIENDSHIPS
AND SUPPORTS IN THE COMMUNITY.
IT COULD BE AN EMPLOYER, IT
COULD BE A BUSINESS OWNER, IT
COULD BE A COACH, IT COULD BE
THE TEACHER OF THE ART CLASS
NEXT DOOR.
BUT YOU KNOW, TRYING TO SUPPORT
CAREGIVERS AND HELPING THEIR
YOUNG ADULTS WITH DISABILITIES
GAIN THOSE OUTSIDE CONNECTIONS,
I THINK THAT WE NEED TO ADVOCATE
FOR MORE FUNDING FOR THAT, AND
WE NEED BETTER SUPPORTS FOR THAT
ADULT TRANSITION, BECAUSE A LOT
OF FAMILIES ARE BEING TOLD THAT,
OH, THEY'LL NEVER BECOME ADULTS
AND THAT'S NOT TRUE.
WE BECOME ADULTS, AND OUR
CAREGIVERS AND OUR FAMILIES NEED
TO BE SUPPORTED IN HELPING US
WITH THAT TRANSITION.
I WOULD NOT HAVE BEEN ABLE TO
TRANSITION WITHOUT MY PARENTS'
SUPPORT, AND BELIEVING IN ME AND
ALLOWING ME TO DO ADULT THINGS.
AND SO WE REALLY NEED TO COME
AROUND THESE CAREGIVERS AND HELP
THEM GET THAT SUPPORT FOR THAT
TRANSITION, AND SO THEY DON'T
HAVE TO WORRY WHEN THEY'RE
OLDER, THAT THERE IS A PLACE FOR
THEIR SONS AND DAUGHTERS THAT
THEY ARE SUPPORTED AND LOVED AND
SEEN AS A FULL HUMAN BEING AND
NOT JUST PUT IN AN INSTITUTION.
AND SO I REALLY JUST WANT TO
STAND BY THOSE CAREGIVERS AND
HELP THEM WITH THAT AND GET THE
FUNDING AND RESEARCH THEY NEED
TO BE ABLE TO GET THAT SUPPORT
IN THE COMMUNITY SO THAT WE
DEVELOP THOSE FREN SHIPS IN THEE
COMMUNITY.
THANK YOU.
>> THANK YOU.
JENNY MAI PHAN.
>> SO THE ADDITIONAL POINT THAT
I WANT TO ADD IS I'VE HEARD
SOMEONE HERE SAY SIBLINGS BEING
TRAINED IN GUARDIANSHIP.
THERE ARE PARENTS WHO AREN'T
EVEN TRAINED IN THAT PROCESS.
AND I'M SPEAKING SPECIFICALLY
ABOUT FAMILIES OF COLOR THAT
I'VE SPOKEN WITH WHO KNEW
NOTHING ABOUT GUARDIANSHIP AS
THEIR CHILDREN TRANSITION INTO
ADULTHOOD.
SO I THINK THAT IS A VERY
CRITICAL MAYBE UNDERREPRESENTED
OR OVERSIGHT IN THESE
CONVERSATIONS, AND I THINK IT'S
VERY IMPORTANT TO ALSO INCLUDE
PARENTS OF COLOR WHO DON'T
UNDERSTAND THE GUARDIANSHIP
PROCESS.
>> THANK YOU.
SAM?
>> I WOULD ALSO ADD THEY NEED TO
BE TRAINED IN ALTERNATIVES TO
GUARDIANSHIP.
[LAUGHTER]
AND ALSO I THINK WE NEED TO TALK
ABOUT THE ROLE OF
PERSON-CENTERED SUPPORTS, PERSON
DIRECTED SUPPORTS AND SERVICES
HERE.
WHICH ARE PROGRAMS WHERE PEOPLE
CAN CHOOSE THEIR OWN CAREGIVERS,
TRAIN THEIR OWN CAREGIVERS.
IT IS AN ABSOLUTELY CRITICAL
COMPONENT, ONE OF MANY
COMPONENTS IN TRYING TO ADDRESS
THE CAREGIVER SHORTAGE, BECAUSE
IT MEANS THAT WE CAN START
PAYING, FOR EXAMPLE, FAMILY
MEMBERS TO PROVIDE SERVICES,
FRIENDS TO PROVIDE SERVICES.
YOU CAN RECRUIT PEOPLE WHO
AREN'T ALREADY DIRECT SUPPORT
PROFESSIONALS, TRAIN THEM IN THE
SPECIFIC THINGS THAT THEY NEED
TO DO THROUGH THAT PERSON, AND
THEN GET THEM IN AND HELPING
PROVIDE CARE.
A LOT OF PERSON-DIRECTED
SUPPORTS AND SERVICES PROGRAMS
AREN'T AVAILABLE TO THE PEOPLE
WITH THE HIGHEST NEEDS.
SO IN D.C. , FOR EXAMPLE, YETTA
KNOWS, IT'S ONLY IN THE WAIVER
PROGRAM THAT HAS A PRETTY
LIMITED CAP ON ANNUAL SPENDING.
SO IF YOU NEED 24/7 OR EVEN
CLOSE TO 2 24/7 CARE, EVEN FULL
TIME, JUST 40 HOURS A WEEK, YOU
CAN'T DO PARTICIPANT-DIRECTED
SUPPORTS AND SERVICES AND WE
NEED TO BE ADVOCATING FOR
EXPANSION OF THOSE PROGRAMS.
>> THANK YOU.
YETTA?
>> JUST WANT TO COSIGN WHAT SAM
SAID.
YEAH, FOLKS JUST DO NOT HAVE THE
EDUCATION ON HOW THESE SYSTEMS
WORK AND IT'S A CHALLENGE FOR A
LOT OF PEOPLE.
I FIND THIS -- AND I THINK I'VE
SAID THIS BEFORE IN OTHER
MEETINGS, I FIND THIS WITH THE
CLINICIANS, RIGHT?
THEY ARE TRAINED TO -- IN ALL
DUE RESPECT, AND I SAID IT THIS
WAY BEFORE, WITH ALL DUE RESPECT
TO THE CLINICIANS, THE
RESEARCHERS, YOU GUYS KNOW WHAT
YOU'RE DOING WHEN IT COMES TO
BEING A SPECIALIST IN YOUR AREA.
HOWEVER, IN THE COMMUNITY, THE
FAMILIES KNOW THAT THE AUTISTIC
SELF-ADVOCATES, RIGHT, THEY KNOW
WHAT'S HAPPENING IN THE
COMMUNITY ON THE GROUND.
AND THAT'S WHY IT REALLY
CRITICAL FOR US TO BE PARTNERING
TOGETHER TO FIGURE OUT, OKAY,
WHAT WORKS, WHAT DOESN'T WORK,
AND AGAIN, THERE'S THE ADDED
LAYER, WHEN YOU KNOW ONE
AUTISTIC INDIVIDUAL, YOU KNOW
ONE AUTISTIC INDIVIDUAL.
SO THAT'S A WHOLE OTHER THING,
BECAUSE HOW DO YOU CREATE
PROGRAMMING FOR THE INDIVIDUAL?
BUT IT NEEDS TO BE DONE IF WE
REALLY TRULY WANT THE INDIVIDUAL
TO BE A PART OF SOCIETY AN TO BE
INCLUDED.
RIGHT?
AND THAT'S GOING TO LOOK
DIFFERENT FOR EACH PERSON.
JUST LIKE EVERYONE IN THIS ROOM,
REGARDLESS OF WHETHER WE'RE
AUTISTIC OR NOT, IS DIFFERENT.
AND ARE MOVING IN THE WORLD THE
WAY WE CHOOSE TO MOVE IN THE
WORLD, RIGHT?
SO I THINK WHEN WE LOOK AT IT
FROM THAT LENS, THAT MAKES A
HUGE DIFFERENCE, BUT WE COULD
TALK ALL DAY, WHICH WE'LL TALK
LATER ABOUT CAREGIVING AND LIKE
THIS CLIFF THAT HAPPENS WHEN
FOLKS ARE TRANSITIONING TO
ADULTHOOD, IT IS A MESS, EVEN
WHEN YOU ARE LINKED IN, YOU
STILL DON'T KNOW WHAT'S
HAPPENING AND WHAT YOU'RE DOING.
>> WE'LL GIVE THE LAST COMMENT
TO SCOTT SO WE CAN CLOSE OUT
THIS SESSION.
>> THERE'S ONE ONLINE TOO,
SUSAN.
>> OKAY.
WE'LL HAVE TWO THEN.
SCOTT, THEN DENA.
>>OKAY, THEN WE CAN MOVE ON TO
DENA AN THAT WILL BE THE LAST
ONE.
>> I JUST WANTED TO ADD A P.S.
TO THAT.
I HAVE A 35-YEAR-OLD SON, I'M AN
ADULT AUTISTIC, I'VE NAVIGATED
EVERY SYSTEM FROM EARLY
INTERVENTION ALL THE WAY THROUGH
TO POST SECONDARY INSTRUCTION.
FOR HIM AND I.
SOCIAL SECURITY, THE FOOD STAMPS
OFFICE, HOUSING.
AND I'M HERE TO SAY TO YOU THAT
THE GREATEST COST TO PARENTS IS
THE BURDEN OF HAVING TO FIGURE
OUT THE HIDDEN CURRICULUM BEHIND
THESE AGENCY PROTOCOLS.
IT IS TOTALLY INHUMANE FOR
PARENTS AND SIBLINGS TO HAVE TO
LEARN HOW TO MASTER THESE
SYSTEMS.
AND PARENT A CHILD WHO HAS NEEDS
AFTER SCHOOL.
WE ABSOLUTELY HAVE TO CREATE AN
ENTIRELY NEW WORKFORCE OF
SYSTEMS NAVIGATORS WHO ARE NOT
ALIGNED WITH THE AGENCIES
DIRECTLY.
WHEN WE APPROACH AGENCIES FOR
SUPPORT, THEY'RE LOOKING FOR A
WAY TO DENY US BENEFITS.
IT'S ALMOST LIKE A PREDATORY
RELATIONSHIP THAT THESE PEOPLE
EXPERIENCE.
WE NEED IMPARTIAL, UNBIASED
DIRECT SUPPORT NAVIGATORS WHO
HAVE MASTERY OVER THESE SYSTEMS,
SO THAT THAT BURDEN IS REMOVED
FROM THE FAMILIES.
THAT DOESN'T MEAN WE DON'T WANT
A VOICE, THAT DOESN'T MEAN WE
DON'T WANT TO KNOW ALL OUR
OPTIONS.
BUT IT'S JUST INHUMANE TO
CONTINUE TO DEMAND THAT WE HAVE
EXPERT MASTERY OF EACH
DEVELOPMENTAL SYSTEM THAT WE
HAVE TO GO THROUGH.
WE HAVE GOT TO CREATE A
WORKFORCE TO ADDRESS THIS.
SORRY, I JUST GET REALLY
IMPASSIONED ABOUT THIS BECAUSE I
THINK IT'S JUST TOO MUCH FOR
FAMILIES.
>> THAT DOES EXIST IN SOME
STATES, LIKE QUALITY TRUST IN
D.C. DOES PROVIDE THAT KIND OF
SERVICE AND IT SHOULD DEFINITELY
BE EXPANDED.
>> ABSOLUTELY.
THANK YOU.
>> THANK YOU SO MUCH.
SHELLI, DO YOU HAVE ANY FINAL
COMMENTS?
>> I DO NOT, OTHER THAN I THINK
ALL OF THIS CONVERSATION IS A
GREAT SEGUE INTO OUR FINAL
SESSION FOR TODAY.
THERE'S CLEARLY A LOT OF
INTEREST IN EXPLORING THE ISSUES
AROUND FAMILY CAREGIVING MORE
BROADLY AND SO WE'RE PLEASED TO
INTRODUCE THIS AFTERNOON SESSION
THAT'S FOCUSED PRECISELY ON
THIS.
WE ALL KNOW INDIVIDUALS ON THE
AUTISM SPECTRUM NEED VARYING
LEVELS OF SUPPORT TO ENSURE
THEIR NEEDS ARE MET.
WE'VE HEARD THAT FROM ALL OF YOU
TODAY.
CAREGIVERS ARE RESPONSIBLE FOR
MANY TASKS, FROM COORDINATING
WITH TEACHERS, DOCTORS, SERVICE
PROVIDERS, TO ENSURING SMOOTH
TRANSITIONS THROUGH LIFE STAGES,
TO PROVIDING 24/7 CARE IN SOME
CASES.
ALL OF THE THINGS YOU ALL HAVE
BEEN MENTIONING THROUGHOUT THE
DAY AND PARTICULARLY WITH THESE
LAST COMMENTS.
WE RECOGNIZE THE FAMILY
CAREGIVER SACRIFICE THEIR OWN
WANTS AND NEEDS IN ORDER TO
ENSURE THOSE OF THEIR LOVED
ONES, THE NEEDS OF THEIR LOVED
ONES ARE MET, AND WE ALSO
RECOGNIZE THAT THIS OFTEN
RESULTS IN PHYSICAL OR MENTAL
HEALTH ISSUES, EMPLOYMENT OR
FINANCIAL CHALLENGES WITHIN
THESE FAMILIES AS WELL.
SO WE WANTED TO SPEND THIS
AFTERNOON ACKNOWLEDGING THESE
CHALLENGES AND THE WORK THAT YOU
DO ON BEHALF OF YOUR LOVED ONES,
AND WE PLANNED A SESSION
SPECIFICALLY TO HIGHLIGHT THE
RESOURCES AVAILABLE FOR FAMILY
CAREGIVERS.
AND TO BRING ATTENTION.
THE ADDITIONAL NEEDS YOU'VE ALL
BEEN TALKING ABOUT IN YOUR
COMMUNITIES.
SO ILL WILL TURN IT OVER TO
SUSAN NOW TO INTRODUCE OUR FIRST
SPEAKERS.
>> THANK YOU, SHELLI.
SO WE PUT TOGETHER THIS
AFTERNOON'S SESSION TO PROVIDE
AN OPPORTUNITY TO THE IACC TO
HEAR ABOUT THE WORK OF OUR
SISTER FEDERAL COMMITTEES THAT
ARE MANAGED BY THE
ADMINISTRATION FOR COMMUNITY
LIVING THAT ADDRESS ISSUES
RELATED TO FAMILY CAREGIVING AND
AS WE KNOW, THIS IS AN IMPORTANT
TOPIC IN AUTISM BUT WE ALSO WANT
TO COORDINATE AND NOT DUPLICATE
EFFORT WITH OTHER COMMITTEES
THAT ARE WORKING IN THIS SPACE.
IN THE IACC, WE TOUCH ON THESE
ISSUES WITH THE SPECIFICITY OF
AUTISM, AND THERE IS ALSO A
COMMITTEE, THE RAISE FAMILY
CAREGIVING ADVISORY COUNCIL
THAT'S ASSIGNED A BROADER
MISSIONARY LATED TO FAMILY
CAREGIVING FOR INDIVIDUALS WITH
DISABILITIES AND OLDER ADULTS.
AND WE WILL HEAR ABOUT THAT
TODAY.
AND WE HOPE THAT THE INFORMATION
SHARED WILL BE CONVEYED TO THE
RAISE FAMILY CAREGIVING ADVISORY
COUNCIL SO THAT THEY CAN KNOW
MORE ABOUT SOME OF THE SPECIFIC
NEEDS THAT THE AUTISM COMMUNITY
IS SHARING AND WE'LL MAKE
CERTAIN TO SHARE THE PUBLIC
COMMENTS PACKET WITH ACL SO THAT
YOU CAN PASS IT ALONG TO YOUR
COMMITTEE AND THEY CAN READ
THROUGH THE COMMENTS FROM
FAMILIES OF INDIVIDUALS ON THE
AUTISM SPECTRUM AND FROM
AUTISTIC INDIVIDUALS.
AND THAT IN THE FUTURE, WE HOPE
THAT OUR COMMITTEES CAN FURTHER
COLLABORATE AND COORDINATE ON
THIS REALLY IMPORTANT ISSUE.
AND CREATE SYNERGY.
AND WITH THAT, I'D LIKE TO
INTRODUCE OUR FIRST SPEAKERS FOR
THIS SESSION.
SO WE'LL BE STARTING WITH SOME
PRESENTATIONS.
M AND FIRST WE'LL BE HEARING
FROM THE ADMINISTRATION FOR
COMMUNITY LIVING, DR. JENNIFER
JOHNSON, AN IACC MEMBER WHO'S
THE DEPUTY COMMISSIONER OF THE
ADMINISTRATION ON DISABILITY AND
MR. JONATHAN WESTIN IS AN AGING
SERVICES PROGRAM SPECIALIST IN
THE OFFICE OF SUPPORTIVE AND
CAREGIVER SERVICES, AND THEY'RE
GOING TO TALK ABOUT ACL
ACTIVITIES THAT SUPPORT FAMILY
CAREGIVERS.
SO I'LL HAND IT OVER TO YOU,
JENNIFER AND JONATHAN.
THANK YOU FOR BEING HERE.
>> THANK YOU FOR HAVING US AND
INCLUDING US TODAY.
A VERY IMPORTANT TOPIC AS WAS
EVIDENCED IN THIS DISCUSSION
THAT WE JUST HAD ABOUT THE
IMPORTANCE OF SUPPORTING FAMILY
CAREGIVERS.
I JUST WANTED TO START BY
PROVIDING A LITTLE BIT OF
INFORMATION ABOUT THE
ADMINISTRATION FOR COMMUNITY
LIVING OR ACL FOR SHORT.
IN CASE SOME OF YOU AREN'T
FAMILIAR WITH US, WE ARE A PAR T
OF THE U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES.
WE WERE CREATED ABOUT 12 YEARS
AGO WITH A MISSION TO ENSURE ALL
PEOPLE, REGARDLESS OF AGE,
DISABILITY, OR LEVEL OF SUPPORT
NEED CAN LIVE AND FULLY
PARTICIPATE IN THEIR
COMMUNITIES.
SO WHAT WE DO IS WE REALLY
BRIDGE THE COMMON INTEREST OF
PEOPLE WITH DISABILITIES AND
OLDER ADULTS TO MAKE SURE THEY
HAVE THE SUPPORTS THEY NEED TO
LIVE IN THE COMMUNITY.
SO THAT'S A VERY HIGH LEVEL
UMBRELLA OF WHERE WE HAVE
INTERSECTING INTERESTS OF BOTH
OLDER ADULTS AND PEOPLE WITH
DISABILITIES, IN TERMS OF THEIR
INTEREST TO LIVE IN THE
COMMUNITY.
BUT FROM THERE, OBVIOUSLY SOME
OF THE ISSUES, WHILE THERE ARE
SOME COMMONALITIES, WE DO DEAL
WITH ISSUES SPECIFIC TO BOTH THE
DISABILITY POPULATION AND OLDER
ADULTS.
BUT WITH THAT MISSION, WE DO
FUND A LARGE NUMBER OF
COMMUNITY-BASED DISABILITY IN
AGING ORGANIZATIONS IN LOCAL
COMMUNITIES ACROSS ALL THE U.S.
STATES OR TERRITORIES.
WE ALSO INVEST IN RESEARCH AND
EDUCATION AND INNOVATION THAT
ADVANCES COMMUNITY LIVING
OPPORTUNITIES FOR OLDER ADULTS
AND PEOPLE WITH DISABILITIES.
SO NOW IN TERMS OF THE TOPIC OF
CAREGIVING, INCLUDING FAMILY
CAREGIVING, IT'S LONG BEEN A
PRIORITY FOR ACL, BECAUSE FOR SO
LONG, SO MANY FAMILIES HAVE
REALLY FILLED IN MAJOR GAPS WHEN
IT COMES TO PROVIDING SUPPORT TO
OLDER ADULTS AND PEOPLE WITH
DISABILITIES FOR THEM TO STAY IN
THE COMMUNITY, ESPECIALLY IF
THEY'RE AT RISK FOR
INSTITUTIONALIZATION.
SO IT BEEN NOT ONLY AN IMPORTANT
PRIORITY FOR US FOR MANY, MANY,
MANY YEARS, IT ALSO BEEN AN
IMPORTANT PRIORITY FOR THIS
ADMINISTRATION AS SUSAN
MENTIONED EARLIER IN THE
PRESIDENT'S EXECUTIVE ORDER THAT
REALLY RECOGNIZES THE
SIGNIFICANT ROLE FAMILIES PLAY
IN CARING FOR THEIR FAMILY
MEMBERS WHO NEED IT.
THAT'S REALLY BECAUSE FAMILY
CAREGIVERS, AS AGAIN WAS
EVIDENCED IN THE DISCUSSION
TODAY, REALLY PROVIDE AN
OVERWHELMING MAJORITY OF
LONG-TERM CARE IN THE UNITED
STATES AND ARE FURTHER SUPPORTED
BY DIRECT SUPPORT PROFESSIONALS,
BUT AS MENTIONED, WE CERTAINLY
ARE FACING AN INCREASING CRISIS
WITH THE NEED FOR DIRECT CARE
PROFESSIONALS.
WE ESTIMATE THAT THERE ARE
53 MILLION OR MORE FAMILY
CAREGIVERS THAT ARE SUPPORTING
THEIR LOVED ONES TO STAY IN THE
COMMUNITY, AND WE KNOW, AGAIN,
THAT THE SHORTAGE OF DIRECT CARE
WORKERS IS REALLY PLACING MORE
RESPONSIBILITIES ON FAMILIES TO
DO THAT CAREGIVING.
OF THIS NUMBER, WE ESTIMATE THAT
2.7 MILLION GRANDPARENTS ARE
SERVING AS CAREGIVERS TO THEIR
GRAND CHILDREN, AND THERE IS AN
UNKNOWN NUMBER OF OTHER RELATIVE
CAREGIVERS THAT ARE SUPPORTING
THEIR FAMILY MEMBERS.
WHEN WE LOOK AT PEOPLE WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES, DATA SHOWS THAT AT
LEAST 60% OF THOSE THAT ARE
RECEIVING PUBLICLY FUNDED
SERVICES AND SUPPORTS, MAINLY
MEDICAID, ARE LIVING WITH THEIR
FAMILIES, AND WE CAN ONLY ASSUME
THAT NUMBER IS THE SAME OR EVEN
MORE FOR FAMILIES AND
INDIVIDUALS THAT ARE NOT
RECEIVING PUBLICLY FUNDED
SERVICES AND SUPPORTS.
AND WHAT THIS DATA REFLECTS
REALLY IS THAT FAMILY MEMBERS
OFTENTIMES CAN'T JUST BE A
PARENT.
A SISTER.
A BROTHER.
AND UNCLE, GRANDPARENT, ANY
FAMILY MEMBER BECAUSE THEY HAVE
TO ALSO BE THE PERSONAL CARE
ATTENDANT, THEY HAVE TO BE THE
DRIVER, THEY HAVE TO BE THE
SOCIAL WORKER TO NAVIGATE THOSE
SYSTEMS AND FIGURE OUT THOSE
FORMS.
THEY HAVE TO BE THE NURSE
PRACTITIONER.
YOU CAN JUST NAME THE LIST OF
THINGS THAT FAMILY MEMBERS TAKE
OP ASON AS A RESPONSIBILITY.
WHEN WE LOOK AT THE COST OF IT,
JUST THE FINANCIAL COST OF IT,
WE ESTIMATE THAT CAREGIVERS ARE
SUPPLYING OVER $600 BILLION IN
UNPAID CARE, AND EXPERIENCE
ALMOST $500 BILLION PER YEAR IN
LOST INCOME.
SO THOSE ARE SIGNIFICANT
STAGGERING IN UM BERS IN TERMS
OF THE FINANCIAL COSTS.
LIKE I SAID, THE SITUATION IS
MADE THAT MUCH MORE DIFFICULT BY
THE SHORTAGE OF DIRECT CARE
PROFESSIONALS, AND IT'S ONLY
GOING TO GET WORSE THAN IT
ALREADY IS, BECAUSE THE
DEMOGRAPHICS SUGGEST WE WILL
NEED OVER 1 MILLION MORE DIRECT
SUPPORT PROFESSIONALS BY 2030.
SO THIS PROBLEM ISN'T GOING AWAY
AT ALL.
AND BECAUSE FEAPS WERE --
CAREGIVERS WERE REALLY FEELING
UNSEEN, AND UNSUPPORTED, A GROUP
OF FAMILY CAREGIVERS EFFECTIVELY
ADVOCATED FOR LEGISLATION THAT
LED TO CONGRESS PASSING IN 2018
LEGISLATION THAT DIRECTED HHS TO
DEVELOP A NATIONAL FAMILY
CAREGIVER STRATEGY, AND YOU'LL
HEAR MORE ABOUT THIS FROM MY
COLLEAGUE JONATHAN, BUT BEFORE I
TURN IT OVER, I DID WANT TO
HIGHLIGHT SOME OF THE OTHER WORK
WE HAVE IN ACL THAT WE HAVE
INVESTED INTO SUPPORT FAMILIES.
WITHIN ACL, I AM WITH THE
ADMINISTRATION ON DISABILITIES,
AND ONE OF THE PROGRAMS WE
ADMINISTER IS THE DEVELOPMENTAL
DISABILITIES ASSISTANCE AND BILL
OF RIGHTS ACT, WHICH HAS LONG
RECOGNIZED THE IMPORTANCE --
IMPORTANT ROLE OF FAMILIES AND
FAMILIES HAVE ALWAYS BEEN
IMPORTANT IN THE DD ACT.
AND AS A RESULT, WE HAVE OVER
THE YEARS MANY YEARS INVESTED IN
FAMILY SUPPORT PROJECTS AND
THAT'S BEEN PROJECTS OVER
DECADES OF INVESTMENT.
ALSO OUR PROGRAMS THAT ARE
FUNDED UNDER THE ACT, THE STATE
COUNCILS ON DEVELOPMENTAL
DISABILITIES, OUR UNIVERSITY
CENTERS FOR EXCELLENCE IN
DEVELOPMENTAL DISABILITIES AND
THE PROTECTION AND ADVOCACY
SYSTEMS ALL ARE DOING WORK IN
VARIOUS WAYS TO SUPPORT FAMILIES
OR TO CHANGE POLICIES IN THE
STATE TO BETTER SUPPORT
FAMILIES.
WE'VWE'VE ALSO FUNDED NATIONAL
PROJECTS THAT HAVE HELPED TO
BUILD STRONGER FAMILY SUPPORT
SYSTEMS IN A NUMBER OF STATES,
INCLUDING THOSE USING THE
CHARTING THE LIFE COURSE TOOLS
THAT WERE DEVELOPED THROUGH A
PROJECT THAT WE FUNDED THAT
NUMEROUS STATES AND LOCAL
COMMUNITIES ARE NOW USING TO
SUPPORT FAMILIES.
WE'RE CURRENTLY INVESTING IN A
PROJECT CALLED THE BRIDGING AND
AGING -- BRIDGING THE AGING AND
DISABILITIES NETWORKS, WHICH IS
ADDRESSING THE NEEDS OF AN
ESTIMATED OVER 1 MILLION
FAMILIES IN THE U.S. WHO BOTH
HAVE ADULTS WITH IDD BUT ALSO
ARE BEING CARED FOR BY AGING
CAREGIVERS.
AND WE ESTIMATE THAT TWO THIRDS
OF THESE FAMILIES DON'T HAVE
ADVANCED CARE PLANS.
MAKING IT A UNIQUE SITUATION AND
NEED FOR AGING FAMILIES AN A
CRITICAL ISSUE.
THAT'S BECAUSE NOT ONLY FAMILIES
WITH AN AGING FAMILY MEMBER WITH
IDD HAVE TO ACCESS MULTIPLE
SYSTEMS, BUT AGING PARENTS WHO
ARE PROVIDING THAT SUPPORT WILL
REQUIRE THEIR OWN SUPPORT AS
THEY AGE, AND SO IT'S VERY
IMPORTANT THAT WE START TO THINK
MORE ABOUT HOW WE'RE CREATING
MORE COORDINATED SERVICES FOR
BOTH OLDER ADULTS WITH AND
WITHOUT -- WELL, OLDER ADULTS AS
THEY AGE INTO DISABILITY AND
THEN OLDER ADULTS WITH
INTELLECTUAL DISABILITIES.
SO THEY HAVE A COMMUNITY OF
PRACTICE WHERE THEY'RE
SUPPORTING 17 STATES, AND REALLY
BUILDING THE CAPACITY BOTH
ACROSS AND WITHIN THE STATE'S SS
AGING AND DISABILITY NETWORKS TO
BETTER SUPPORT INDIVIDUALS WITH
IDD AS THEY AGE AND THEIR FAMILY
CAREGIVERS AS THEY AGE TO
IMPROVE THE PLANNING TO ADDRESS
THEIR INDIVIDUAL NEEDS, GOALS
AND PREFERENCES ACROSS THE
LIFESPAN.
I ALSO WANTED TO BRIEFLY MENTION
A FEW OTHER ACTIVITIES WITHIN
ACL.
WE SUPPORT THE PRESIDENT'S
COMMITTEE FOR PEOPLE WITH
INTELLECTUAL DISABILITIES, WHICH
IS ALSO A FEDERAL ADVISORY
COMMITTEE, AND THEY'RE CURRENTLY
WORKING ON THEIR REPORT TO THE
PRESIDENT, AND THE REPORT THAT
THEY'RE WORKING ON IS FOCUSED
BROADLY ON HOW HIGH QUALITY HOME
AND COMMUNITY-BASED SERVICES CAN
BEST SUPPORT INDIVIDUALS WITH
INTELLECTUAL DISABILITIES TO
LIVE WELL IN THE COMMUNITY AND
WHILE THE REPORT DOESN'T HAVE A
SPECIFIC FOCUS ON FAMILY
CAREGIVING, MANY OF THE TOPICS
AND RECOMMENDATIONS IF
IMPLEMENTED WOULD HAVE A
POSITIVE IMPACT ON FAMILIES,
THIS WAS DISCUSSED IN THE
PREVIOUS DISCUSSION.
SUSAN ALSO MENTIONED THE 20
STATES THAT ARE RECEIVING
SUPPORT TO ADDRESS THE DIRECT
CARE WORKER RECRUITMENT AND
RETENTION ISSUES THAT WE'VE
TALKED ABOUT.
AND THAT WORK IS ACTUALLY BEING
DONE THROUGH OUR DIRECT CARE
WORKFORCE CENTER THAT WE ARE
FUNDING, AND THEY ARE THE ONES
THAT ARE WORKING WITH THE 20
STATES THAT ARE WORKING TO
ADDRESS THAT GROWING CRISIS AND
THE LACK OF DIRECT CARE WORKERS,
IN ADDITION TO OTHER ACTIVITY
THAT THEY'RE DOING INCLUDING A
WEBSITE THAT HAS RESOURCES ON
THE DIRECT CARE WORKFORCE.
I ALSO WANTED TO BRIEFLY MENTION
A PROJECT THAT WE ARE FUNDING
CALLED THE CENTER FOR YOUTH
VOICE YOUTH CHOICE, AND THIS IS
ADDRESSING SOME OF THE COMMENTS
THAT WERE MADE ABOUT
ALTERNATIVES TO GUARDIANSHIP AND
THE IMPORTANCE OF HAVING
RESOURCES AROUND ALTERNATIVES TO
GUARDIANSHIP.
SO THIS CENTER IS AIMED AT YOUTH
TO ADDRESS THE SCHOOL TO
GUARDIANSHIP -- I'M SORRY -- THE
SCHOOL TO GUARDIANSHIP PIPELINE
FOR MANY YOUTH SO THAT THEY CAN
BECOME MORE INFORMED
ALTERNATIVES TO GUARDIANSHIP AS
THEY BECOME A LEGAL ADULT.
WHILE THE FOCUS OF THE CENTER IS
ON YOUTH AND ONE OF THE GREAT
HIGHLIGHTS OF THIS PROJECT IS
THE DEVELOPMENT OF YOUTH
AMBASSADORS, WE CURRENTLY HAVE
41 AMBASSADORS THAT ARE BEING
DEVELOPED AS PEER LEADERS ON
ALTERNATIVES TO GUARDIANSHIP,
AND I'M PLEASED TO SAY THAT THE
GROUP IS VERY, VERY DIVERSE, IF
I SHOWED A PICTURE RIGHT NOW YOU
WOULD SEE THE DIVERSITY OF THOSE
YOUTH AMBASSADORS.
BUT THE RESOURCE CENTER ALSO HAS
RESOURCES FOR FAMILIES SO THEY
CAN SUPPORT THEIR YOUTH AND
UNDERSTAND ALTERNATIVES TO
GUARDIANSHIP AS WELL AS THEY
TRANSITION INTO ADULTHOOD.
THE LAST PROGRAM I WANTED TO
HIGHLIGHT IS A RESOURCE, THE
LIFESPAN RESPITE CARE PROGRAM
THAT WE HAVE ADMINISTERED SINCE
2009.
I THINK AGAIN ALL THE COMMENTS
KIND OF ALLUDED TO THE
IMPORTANCE OF RESPITE CARE FOR
FAMILY CAREGIVERS, BECAUSE IT'S
AN ESSENTIAL COMPONENT OF HOME
AND COMMUNITY-BASED SERVICES AS
A CONTRIBUTOR TO HEALTHIER
FAMILIES AND THE HEALTH AND
WELL-BEING OF CAREGIVERS AND
ALSO THE CARE RECIPIENTS.
SO UNDER THIS PROGRAM, ACL HAS
AWARDED COMPETITIVE GRANTS TO
ELIGIBLE AGENCIES IN 38 STATES
AND THE DISTRICT OF COLUMBIA.
AND THE GRANTS ARE DESIGNED TO
CREATE COORDINATED STATE SYSTEMS
OF ACCESSIBLE COMMUNITY-BASED
RESPITE CARE SERVICES.
SO NOT ONLY ARE THEY PROVIDING
THAT AS A RESOURCE, THEY'RE ALSO
FOCUSED ON ELEVATING THE CALIBER
AND THE AVAILABILITY OF RESPITE
SERVICES THROUGH THE EXPANSION
AND ENRICHMENT OF RESPITE
SERVICES WITHIN STATES, AND ALSO
ENHANCING DISSEMINATION AND
COORDINATION OF THOSE SERVICES.
THEY'RE ALSO WORKING TO
FACILITATE EASE OF ACCESS TO THE
RESPITE CARE PROGRAMS, AND
IDENTIFYING AND ADDRESSING ANY
EXISTING SERVICE GAPS IN THE
STATES AND THE DISTRICT OF
COLUMBIA, AND THEN ENHANCING THE
OVERALL QUALITY OF PRESENT
RESPITE SERVICES THAT ARE BEING
PROVIDED.
SO THESE RESPITE PROGRAMS
SUPPORT FAMILY CAREGIVERS OF
CHILDREN AND ADULTS ACROSS ALL
AGE GROUPS, DISABILITIES, AND
ALSO CHRONIC CONDITIONS.
AND THE VEST PIET CAR RESPITE CH
PLANNED AND EMERGENCY BASED AND
EXPANDED TO INDIVIDUALS NEEDING
ASSISTANCE TO TEMPORARILY
RELIEVE FAMILY CAREGIVERS.
AS PART OF THIS WORK, ACL HAS
FUNDED THE ARCH NATIONAL RESPITE
NETWORK AND RESOURCE CENTER TO
PROVIDE TA TO THE LIFESPAN
RESPITE PROGRAM GRANTEES AND THE
FIELD SINCE 2009.
SO AS I CLOSE OUT MY PART, I
JUST WANTED TO QUICKLY TOUCH
UPON THE TOPIC OF DATA, WHICH
WAS MENTIONED BY ONE OF OUR
PUBLIC COMMENTERS AND THE
IMPORTANCE OF HAVING DATA ON
SUPPORT FOR FAMILIES AND FAMILY
CAREGIVERS, AND WHILE WE'VE MADE
PROGRESS ON HAVING SOME OF THAT
DATA, WE REALLY DO NEED TO HAVE
MORE DATA AND DATA ON A REGULAR
BASIS ON THE FAMILY EXPERIENCE,
AND WE NEED THIS ON ALL FAMILIES
REGARDLESS OF WHETHER THEY ARE
SUPPORTED BY THE STATE OR NOT,
IF THEY'RE RECEIVING PUBLICLY
FUNDED SUPPORTS OR NOT, WE NEED
IT ON ALL INDIVIDUALS WHO ARE
PROVIDING SUPPORT TO THEIR LOVED
ONES.
SO NOW I WOULD LIKE TO TURN IT
OVER TO MY COLLEAGUE JONATHAN
WESTIN, WHO IS RELATIVELY NEW TO
OUR AGENCY BUT ALREADY MAKING A
GREAT IMPACT IN TERMS OF THE
WORK THAT WE ARE DOING.
AS WAS MENTIONED, HE'S AN AGING
SERVICES PROGRAM SPECIALIST IN
OUR OFFICE OF SUPPORTIVE AND
CAREGIVER SERVICES IN THE
ADMINISTRATION ON AGING, SO I'LL
TURN IT OVER TO YOU, JONATHAN.
>> JENNIFER, THANK YOU VERY
MUCH.
I ALSO JUST WANTED TO TAKE A
NOTE AND THANK YOU FOR YOW
INCREDIBLE LEADERSHIP REGARDING
OUR AGENCY ON DISABILITY, THE
WORK THAT THEY HAVE DONE THROUGH
THE YEARS.
YOU COULD NOT ASK FOR A MORE
COMMITTED STAFF AROUND
DISABILITY THAN JENNIFER, SO
THANK YOU.
>> CAN YOU BRING THE MIC CLOSER,
PLEASE?
>> I CERTAINLY CAN, THAT MIGHT
THE FIRST TIME ANYONE ACCUSED ME
OF NOT BEING ABLE TO HEAR ME
GIVEN THIS VOICE, BUT CAN
EVERYONE HEAR ME NOW?
EXCELLENT.
THANK YOU VERY MUCH.
REALLY APPRECIATE THIS
OPPORTUNITY TO PRESENT TO YOU
ALL.
IF WE CAN ADVANCE THE SLIDE THAT
WOULD BE GREAT.
THANK YOU.
SO HOW DO WE CREATE A WORLD
WHERE CAREGIVING IS ACCEPT TRAL
TO WHO WE ARE AS OPPOSED TO
SOMETHING THAT DIVERTS US OR IS
A SIDELINE OF OUR REAL LIVES?
THIS WAS A QUESTION POSED BY
KARYL ZERNIAL, THE RAISE COUNCIL
CO-CHAIR.
WE'RE GOING TO GET INTO THE
RAISE COUNCIL IN A MOMENT.
SO THE RAISE, WHICH AS JENNIFER
MENTIONED WAS AN ACT PASSED IN
2018, STANDS FOR RECOGNIZE,
ASSIST, INCLUDE SUPPORT AND
ENGAGE -- THIS WAS PASSED IN
2018, AND IT ALSO INCLUDES A
NATIONAL STRATEGY TO SUPPORT
FAMILY CAREGIVERS, WHICH I'M
GOING TO BE DERLVING INTO IN A
MOMENT.
SO THERE ARE THREE KEY
COMPONENTS TO THE RAISE ACT.
THERE'S THE FAMILY CAREGIVING
ADVISORY COUNCIL, THAT'S THE
RAISE COUNCIL, THERE IS THE
INITIAL REPORT TO CONGRESS, AND
THERE'S THE NATIONAL FAMILY
CAREGIVING STRATEGY.
THE INITIAL REPORT IS CURRENTLY
IN WHAT THEY CALL HHS CLEARANCE
RIGHT NOW, AND THAT WILL BE, WE
HOPE, AS LONG AS IT DOES GO
THROUGH CLEARANCE SMOOTHLY,
TRANSACTED TO CONGRESS SOMETIME
THIS FALL.
WE PRIDE OURSELVES AT ACL,
ADMINISTRATION ON AGING WHICH IS
PART OF ACL SINCE THE MERGER, ON
MAXIMIZING PUBLIC ENGAGEMENT AT
EVERY STEP ALONG THE WAY.
SO FOR STARTERS, ACL BACK IN
2019 HAD A REQUEST FOR
INFORMATION OR AN RFI.
WE GOT 1,613 RESPONSES.
75% OF THESE RESPONSES WERE
THERE FAMILY CAREGIVERS.
THERE WAS A WHOLE TROPH OF WHOLF
CAREGIVING FOCUS GROUPS, WE
PRIDED OURSELVES TO ENSURE THAT
ALL POPULATIONS WERE REPRESENTED
INCLUDING TEENS, BECAUSE TEENS
MAY COMPRISE THE MAJORITY OF
WHAT WE CALL OUR CAREGIVING
YOUTH, AND THEY ARE A POPULATION
THAT WE NOT ONLY CARE ABOUT, BUT
ARE WATCHING EVERY STEP OF THE
WAY.
WE ALSO ENGAGED AND CREATED A
BUNCH OF STAKEHOLDER LISTENING
SESSIONS.
WE HAD SIX SESSIONS THAT FOCUSED
ON THE OPERATIONAL -- PUTTING
INTO OPERATIONS, THERE'S A TURNG
TONGUE TWISTER FOR ME, FOCUSING
ON THE OPERATIONS.
SO IT WAS HOW WE OPERATIONALIZED
THESE AND HOW WE MAKE THEM, I
WOULD SAY, THE MOST PRAGMATIC
THAT THEY CAN BE FOR THE FAMILY
CAREGIVING POPULATION.
OVER THE PAST PERIOD OF A YEAR
BETWEEN DECEMBER 2020 AND
DECEMBER 2021, WE HAD SEVERAL
INTERVIEWED AND LISTENING
SESSIONS, 17 INTERVIEWS,
22 LISTENING SESSIONS AND WE
ALSO SOLICITED THE ADVICE AND
GUIDANCE OF 145 STAKEHOLDER
ORGANIZATIONS VESTED IN FAMILY
CARE GIVING APPROACHES.
AND THESE INCLUDED STATE
ENTITIES, COUNTIES, EMPLOYERS,
BOTH LARGE EMPLOYERS AND SMALL
ONES, THE HEALTHCARE AND THE
LONG-TERM SERVICES AND SUPPORTS
PROVIDERS, AS WELL AS
FAITH-BASED ORGANIZATIONS.
WE ENSURE THAT THERE WOULD BE
ONE STRATEGY AND FOUR COMPONENTS
OF THAT ONE STRATEGY.
THESE COMPONENTS WERE COMPRISED
OF THE 2022 NATIONAL STRATEGY TO
SUPPORT FAMILY CAREGIVERS, WHICH
IS AN OVERVIEW AND DESCRIPTION
OF THE STRATEGY GOALS AND THE
INTENDED OUTCOMES.
SECONDLY, WE ISSUED A DOCUMENT
CALLED FIRST PRINCIPLES, WHICH
WAS ENTAILED THE CROSS-CUTTING
CONSIDERATIONS FOR FAMILY
CAREGIVERS TO ENSURE THAT THEY
HAD THE SUPPORT THAT WAS NEEDED.
THESE WERE FOUR KEY PRINCIPLES
THAT HAD TO BE REFLECTED IN ALL
EFFORTS TO IMPROVE SUPPORT TO
THE FAMILY CAREGIVER.
FEDERAL ACTIONS.
I'M ACTUALLY FRANKLY -- NOT TO
INSERT MY OPINION HERE BUT I
GUESS -- MOST PROUD OF THIS
PRONG.
NEARLY 350 ACTIONS THAT 15
FEDERAL AGENCIES TOOK INTO
ACCOUNT IN THE NEAR TERM TO
BEGIN IMPLEMENTATION OF THAT
STRATEGY.
I AM IN THE PROCESS OF SPEAKING
VIRTUALLY TO ALL THESE.
WE CALL THEM FEDERAL AGENCY
MEMBERS, TO SEE WHAT THEY'VE
ACCOMPLISHED, WHAT THEY'RE
HAVING CHALLENGES ACCOMPLISHING,
WHAT'S ON TAP FOR FUTURE
ACCOMPLISHMENTS, AND MOLES, I
THINK, FASCINATING, WHAT THEY
HAVE LEARNED FROM WHAT THEY'VE
ACCOMPLISHED, LIKE PEELING BACK
AN ONION, AND HOW THAT, PERHAPS,
ALTERS THEIR VIEW OF FUTURE
ACTIONS MOVING FORWARD.
SO THIS IS ALWAYS MEANT TO BE
FOR THE AGENCIES A WORK IN
PROGRESS.
AND IT IS AS I MENTIONED LIKE
PEELING BACK AN ONION.
WE DON'T KNOW ENOUGH ABOUT
FAMILY CAREGIVERS, WE DON'T KNOW
ENOUGH ABOUT THEIR STRUGGLES,
AND THIS IS HAVING SOME VERY
TARGETED CONSEQUENCES FOR WHAT
WE ARE DOING MOVING FORWARD
BECAUSE THIS IS A GROWTH AREA.
ACTIONS FOR STATES, COMMUNITIES
AND OTHERS, THERE ARE ABOUT 150
ACTIONS THAT WE ARE ALSO
MONITORING BY STATES, BY
COUNTIES, EVEN BY LARGE
METROPOLITAN AREAS ON WHAT
FAMILY CAREGIVING ENTAILS FOR
THEIR RESIDENTS AND HOW WE COULD
MAKE A MEANINGFUL IMPACT MOVING
FORWARD.
SO LET ME -- LET'S PICTURE TWO
BUCKETS HERE ABOUT WHAT THE
STRATEGY IS AND WHAT IT'S NOT.
SO THE STRATEGY REPRESENTS A
VISION AND A ROAD MAP FOR
CHANGE, A BASELINE FOR ACTION
AND PROGRESS, FRAMEWORK FOR ALL
CAREGIVING SITUATIONS AND
EXPERIENCES, AS WELL AS THE FACT
THAT IT MUST BE INTENDED FOR USE
BY MANY STAKEHOLDER GROUPS.
WE DID NOT WANT TO MAKE THIS
SOME ESOTERIC DOCUMENT THAT
WOULD BE VERY DIFFICULT TO
IMPLEMENT.
WE WANTED TO MAKE IT CRISP,
CLEAR, AND ABOVE ALL ELSE,
ACTIONABLE.
FOR THE FAMILY CAREGIVERS, AND
FOR THE POPULATIONS THAT FEED IN
TO THE FAMILY CAREGIVER
THEMSELVES.
THE STRATEGY IS NOT A TIMELINE
OR A HOW-TO DOCUMENT.
WE DIDN'T FEEL THAT THIS WAS OUR
ROLE GIVEN THE CHARGE THAT WE
HAD DUE TO THE PASSAGE OF THE
RAISE ACT BACK IN 2018.
IT IS NOT A LIST OF REQUIREMENTS
OR MUSTS.
WE FELL THAT, AGAIN, THERE
NEEDED TO BE SOME FLEXIBILITY AT
THE STATE LOCALITY LEVEL, AND WE
ALSO WANTED TO, IF YOU WILL, NOT
LEAN IN BUT LEAN BACK JUST A BIT
TO GET OUT OF THE FEEDBACK THAT
WE FELT WAS NECESSARY FROM POOR
CONSTITUENCIES, THOSE THAT I
MENTIONED EARLIER IN MY REMARKS.
THERE'S ALSO NOW SUPPOSED TO
BE -- EXHAUSTIVE OF ALL
POSSIBILITIES.
THIS HAD TO BE SOMETHING THAT,
YES, WE WOULD PROVIDE DIRECTION
AND INSTRUCTION TO, BUT IT HAD
TO BE SOMETHING THAT CAME FROM
THE GROUND UP, FROM THE TRENCHES
UP.
THAT TO US WAS VERY IMPORTANT.
IT'S CLEARLY SOMETHING AS I
MENTIONED THAT IS EVOLUTIONARY
WORK IN PROGRESS.
THIS SLIDE REALLY ENCOMPASSES, I
FEEL, THE PHILOSOPHY OF HOW WE
INTERPRETED THE RAISE ACT.
IT'S A WHOLE OF SOCIETY
APPROACH.
SO HERE ARE SOME OF THE
DIFFERENT GROUPS WE CAN SEE UP
HERE THAT REPRESENT SOME OF THE
CROSS-CUTTING SECTIONS THAT ARE
ENGAGED AND INVOLVED ON A DAILY,
SOMETIMES HOURLY BASIS WITH A
FAMILY CAREGIVER AND THEIR
FAMILIES.
THEY CONSIST OF STATE TRIBES,
COUNTY GOVERNMENTS AND THE
COMMUNITY.
REALLY THIS IS FIRST FOR A
REASON.
THIS ENCOMPASSES A MAJORITY OF
FOLKS HERE THAT ARE ENGAGED IN
FAMILY CAREGIVING.
COMMUNITY-BASED PROVIDERS OF
LONG-TERM SERVICES AND SUPPORTS,
MANY OF WHOM HAVE SEEN UNPRESS
UNPRECEDENTED CLOSURES OF
INSTITUTIONAL PROVIDERS, WHICH
HAS HAD A CHILLING EFFECT ON
DEMAND AND INCREASED TRAIN ON
THE HOME AND COMMUNITY-BASED
PROVIDER AND IT'S CALLED INTO
QUESTION SOME OF THE SCANT
RESOURCES THAT WERE AVAILABLE
ALREADY AND HOW THEY HAVE BECOME
MORE RARE THAT WE'RE FORCED TO
LOOK AT GIVEN THESE CHANGES AND
TRENDS POST COVID.
CHILD WELFARE AGENCIES, KINSHIP
SUPPORT SYSTEMS.
WE ACTUALLY DELVE INTO ON A
RELATED COMMITTEE CALLED -- A
LOT OF SLANG TERM IS KINCARE BUT
THAT KINSHIP, WHAT THAT MEANS
AND HOW WE CAN ALSO SUPPORT
THOSE GRANDPARENTS RAISING
GRANDCHILDREN THROUGH MY
COLLEAGUE LAURIE STAFFS THAT
COMMITTEE.
HEALTHCARE SYSTEMS OF COURSE I
WOULD SAY THE HEALTHCARE SYSTEM
AS YOU ALL KNOW IN THIS ROOM HAS
TI TAKEN ON INCREASING --
MERGERS AND ACQUISITIONS, WHAT
THEY MEAN TO CARE, PARTICULARLY
IN THIS HEALTH TECHNOLOGY
ENVIRONMENT THAT WE LIVE IN.
I MENTIONED THE COMMUNITIES
REALLY -- FAITH-BASED
ORGANIZATIONS ARE VITAL IN THIS
AREA.
PHILANTHROPY, ANOTHER
FOUNDATIONAL COMPONENT, AND
RESEARCH FOR US HOLD A MAJOR
PLACE, AND WE'RE GOING TO GO
OVER JUST IN A MOMENT THE
NATIONAL CAREGIVING SUPPORT
COLLABORATIVE, WHICH I'M PLEASED
TO STAFF AS WELL, AND DISCUSS
THE IMPORTANCE OF RESEARCH.
BECAUSE WE NEED TO BUILD THAT
BENCH OUT.
ADVOCATES, FAMILY CAREGIVERS,
CARE REA S RECIPIENTS, VIRTUALLY
ANYONE WHO HAS BEEN TOUCHED,
PEOPLE, YOUR FAMILY, YOURSELF,
PEOPLE IN YOUR COMMUNITY THAT
YOU MIGHT BE CLOSE TO.
SO LET'S TALK ABOUT THAT
NATIONAL STRATEGY AS A DRIVER
FOR CHANGE.
RUNNING THROUGH THESE SLIDES BUT
I'VE GOT A LOT OF CONTENT TO
BREEZE THROUGH.
>> IF YOU CAN SORT OF GIVE US
THE HIGH LEVEL MESSAGES FOR EACH
OF THESE, THAT WOULD BE REALLY
GREAT AND WE CAN TRY TO KEEP ON
TIME HERE.
>> YOU GOT IT.
MY APOLOGIES FOR THAT.
>> NO PROBLEM AT ALL.
>> NATIONAL CAREGIVER SUPPORT
COLLABORATIVE, LET ME FOCUS ON
THAT AND THE M.O. OF THIS SLIDE
HERE.
WE HAVE FIVE GRANTEES, ONE GOAL
YOU A PIECE, AS WELL AS
TECHNICAL ASSISTANCE
COORDINATION THAT WE DO AND
PRIDE OURSELVES ON.
THESE GRANTEE GOALS INCLUDE
RESEARCH.
THEY ALSO INCLUDE A FAMILY
CAREGIVER ADULT, FAMILY
CAREGIVER COORDINATION AND
SUPPORT FOR ADULT CAREGIVERS
FLEURCHLT AS WELL AS EDUCATION
AND OUTREACH, AS WELL AS
COORDINATION OF CARE.
LASTLY, FINANCIAL SECURITY.
THAT'S A BIG ONE.
SO WE HOPE THAT THE STRATEGY
WILL BE A UNIFYING STRUCTURE FOR
WORKING TOGETHER.
THAT IS FOR US A MAJOR IMPETUS.
WE KNOW IT'S ALREADY SERVED AS A
FRAMEWORK FOR COMMUNITY
PLANNING, AND IT HAS ALSO
SPEARHEADED EMPLOYER ENGAGEMENT
AS WE GET UNDERWAY.
WE ARE VERY PLEASED TO HAVE AS A
PARTNER IN THIS THE JOHN A.
HARTFORD FOUNDATION WHICH HAS IN
TURN FUNDED THE NATIONAL ACADEMY
FOR STATE HEALTH POLICY OR
NASHP.
THIS ENCOMPASSES A LOT OF THE
WORK THAT WE DO TO HAVE THESE
EXTRA RESOURCES AND TO REALLY
UNDERSTAND STATE FAMILY
CAREGIVING POLICY.
SO AS WE LOOK AHEAD, ALMOST DONE
HERE, SUSAN.
AS WE LOOK AHEAD, WE LOOK TO THE
JOINT RAISE/SG RG COUNCIL
REPORT, WHICH IS AGAIN IN
MOTION.
WE HOPE TO HAVE TO CONGRESS IN
THE FALL, AFTER CLEARANCES.
FEDERAL AGENCIES THAT WE WILL
BEGIN MEETING WITH ON A FAR MORE
REGULAR BASIS, THESE FEDERAL
AGENCY MEMBERS OF THE RAISE AND
SCRG, TO BETTER COORDINATE WITH
THEM TO NOT ONLY ENSURE THEY ARE
MEETING THE GOALS THAT
THEY'VE -- HOW THOSE GOALS HAVE
EVOLVED INTO NEW GOALS.
THE SUBCOMMITTEES WE HAVE WILL
BE NOT ONLY GATHERING
INFORMATION AND -- THEY'LL
REVIEW RESEARCH AND DATA AND
BEGIN CRAFTING IDEAS FOR
NON-FEDERAL SECTOR UPDATES FOR
THE STRATEGY IN 2025.
AND I'LL INWIT END WITH A QUOTEM
OUR ADMINISTRATOR, ACTING
ADMINISTRATOR.
WE NOW HAVE AN UNPRECEDENTED
OPPORTUNITY TO ACHIEVE AND GO
FAR BEYOND THE GOALS CONGRESS
ESTABLISHED IN THE RAISE FAMILY
CAREGIVERS ACT.
WE DO HOPE THAT YOU ALL ARE A
PART OF THIS, AND WE'RE VERY
GRATEFUL FOR THE OPPORTUNITY AT
AOA WITHIN ACL TO BE PRESENTING
BEFORE YOU ALL TODAY.
THANK YOU VERY MUCH, SUSAN,
THANK YOU FOR YOUR TIME.
>> THANK YOU.
AND WE'RE SO HAPPY TO HEAR ABOUT
THE IMPORTANT WORK THAT THIS
SISTER COMMITTEE IS DOING AND DO
HOPE MEMBERS OF OUR AUDIENCE AND
COMMITTEE MEMBERS WILL FEEL FREE
TO TUNE IN FOR THEIR MEETINGS
ESPECIALLY BETWEEN THE INTERIM
BETWEEN IACCs, SO NOW YOU KNOW
WHO TO TALK TO IF YOU HAVE
QUESTIONS ABOUT THAT.
THANK YOU.
AND I'LL TURN IT OVER TO SHELLI.
>> THANKS, SAW SAN.
, SUSAN.
SO I'M HAPPY TO INTRODUCE OUR
NEXT SPEAKER.
OUR NEXT SPEAKER IS DR
DR. CHRISTINA MA
MARSACK-TOPOLEWSKI, ASSOCIATE
PROFESSOR OF SOCIAL WORK AT
EASTERN MICHIGAN UNIVERSITY.
SHE WILL BE SPEAKING ABOUT HER
RESEARCH STUDYING CAREGIVER
BURDEN AMONG FAMILY MEMBERS OF
AUTISTIC INDIVIDUALS.
THANKS FOR JOINING US.
>> THANK YOU SO MUCH.
IF IT POSSIBLE IF I CAN
UNMUTE -- OR SHOW MY SCREEN, I
AM HERE, BUT IT LOOKS LIKE I
JUST -- THERE'S A TECH -- OH,
THERE WE GO.
THANKS SO MUCH.
WELL, THANKS FOR THE OPPORTUNITY
TO BE HERE.
I'M KRISTI MARSACK TOPOLEWSKI.
MY BACKGROUND IS IN SPECIAL
EDUCATION, MASTERS IN PH.D. ARE
BOTH IN SOCIAL WORK, WHERE I
ALSO -- I STUDY DISABILITY BUT I
ALSO DID A FOCUS ON AGING, AND
SO I'VE WORKED IN THE PUBLIC
SCHOOLS FOR ABOUT 20 YEARS NOW,
NOW IN A PART-TIME CAPACITY, AND
I SAY THAT JUST TO GIVE SOME
CONTEXT TO MY BACKGROUND AND WHY
I DO THIS WORK, AND AS I WAS
WORKING IN THE PUBLIC SCHOOLS
MAINLY WORKING WITH ADOLESCENTS
TRANSITIONING TO ADULTHOOD,
WORKING WITH A LOT OF
INDIVIDUALS WITH VARIOUS
ABILITIES, INCLUDING AUTISTIC
ADOLESCENTS, REALLY SEEING KIND
OF THE DIFFERENT SCENARIOS THEY
WERE GRAPPLING WITH, AND SO AT
THAT TIME, I'VE REALLY KIND OF
FOCUSED AND HAVE SINCE THEN
FOCUSED ON REALLY KIND OF
UNDERSTANDING THE EXPERIENCES
OF -- CAREGIVERS OF AUTISTIC
INDIVIDUALS AS WELL AS
POPULATIONS WITH OTHER
NEURODEVELOPMENTAL DISABILITIES.
I SAY THAT TO JUST GIVE SOME
CONTEXT.
I STILL DO WORK IN THE PUBLIC
SCHOOLS ALTHOUGH I AM FULL TIME
AT THE UNIVERSITY, AND THE
SCHOOL OF SOCIAL WORK, BUT IT'S
ALLOWED ME TO REALLY STAY REALLY
GROUNDED INTO SOME OF THE
DIFFERENT THINGS GOING ON.
I'LL JUST START WITH KIND OF A
CAVEAT.
WE KNOW AND I KNOW THIS HAS BEEN
ALLUDED THROUGH KIND OF
THROUGHOUT TODAY'S MEETING,
WHERE WE KNOW ONE PERSON WITH
AUTISM, WE KNOW ONE PERSON WITH
AUTISM.
SO AUTISM SPECTRUM DISORDER
REALLY IS A SPECTRUM OR A
CONTINUUM, AND SO I SAY THAT
JUST TO GIVE RESPECT CERTAINLY
TO THE VARIOUS SITUATIONS AND
THE VARIOUS PERSPECTIVES AND THE
VARIOUS PEOPLE WHO ARE IMPACTED
BOTH AS FAMILY CAREGIVERS AND
BOTH AS AUTISTIC ADULTS WITH
AUTISM.
AND THEN SECONDLY, I'LL BE USING
THE TERM ADULT WITH AUTISM AND
AUTISTIC ADULTS INTERCHANGEABLY.
IN MY WORK OVER THE LAST 20
YEARS, I'VE FOUND THAT PEOPLE
HAVE DIFFERENT PREFERENCES WITH
THIS LANGUAGE, SO I JUST WANT TO
KIND OF SHARE THAT AND GIVE
VOICE TO THAT AND BE CERTAINLY
RESPECTFUL TO THE DIFFERENT
VARIATIONS IN TERMS OF THE
LANGUAGE THAT'S USED.
I SHARED A LITTLE BIT ABOUT
MYSELF.
MY BIOIS THERE AS WELL.
BUT IN TERMS OF JUST KIND OF THE
OVERVIEW, TODAY I'M GOING TO BE
TALKING ABOUT THREE MAIN THEMES.
THESE ARE GROUNDED IN THE
RESEARCH I'VE DONE INDIVIDUALLY
AS WELL AS COLLECTIVELY WITH
SOME RETECH TEAMS ACROSS THE
COUNTRY BUT SHERNLY NATIONAL
OUTCOMES REALLY THE WORK I'VE
DONE REALLY FOCUS ON THE
EXPERIENCES OF FAMILY CAREGIVERS
OF AUTISTIC ADULTS.
I'M GOING TO BE TALKING FIRST
AND FOREMOST ABOUT THE NEED FOR
TAYLORED ACCESSIBLE SERVICES.
SECOND, ABOUT SUPPORT WITH
SERVICE NAVIGATION.
I WROTE DOWN I THINK IT'S
MRS. DENA GASSNER REALLY SAID
THAT SO WELL WHEN SHE
ARTICULATED JUST SOME OF THE
CHALLENGES WITH REALLY FAMILIES
INFORM FAMILIES 1/2 IMAI NAVIGAD
THE TIME -- AND THAT NEED TO
PLAN FOR THE FUTURE.
I KIND OF SMILED WHEN I SAW
DR. JENNIFER JOHNSON BROUGHT UP
ADVANCED CARE PLANNING.
MY COLLEAGUE DR. JACKIE MCGINLEY
OUT OF NEW YORK AND I HAVE SOME
WORK PUBLISHED ON ADVANCED CARE
PLANNING AND LOOKING AT SOME
DIFFERENT WAYS TO EVEN NESTLE
THIS WITHIN PERSON-CENTERED
PLANNING.
WE KNOW THAT PROFESSIONALS,
PROVIDERS, FAMILY CAREGIVERS,
W,ADULTS WITH DISABILITIES ARE
TAXED, THEY'RE DOING A LOT TO
EVEN NAVIGATE THE EXISTING
SERVICE, CONTINUUM OF WHAT'S
AVAILABLE, SO PUTTING ANYTHING
ON ANYBODY IS JUST TOO MUCH SO
REALLY HOW DO WE START TO THINK
INNOVATIVELY OF HOW DO WE
DELIVER SERVICES MORE
EFFICACIOUSLY BUT IN A WAY THAT
CAN REALLY BE DONE FROM A
PRAGMATIC STANDPOINT GIVEN THE
BANDWIDTH AND THE CAPACITY AND
CERTAINLY THE SHORTAGES WE'RE
SEEING ACROSS THE COUNTRY, AS IT
PERTAINS TO BOTH PAID AND UNPAID
CAREGIVING.
I JUST WANT TO ALSO MENTION,
I'LL BE TALKING A LOT ABOUT
FORMAL SOCIAL SUPPORT NETWORKS.
A LOT OF MY RESEARCH DOES ALSO
LOOK AT INFORMAL SOCIAL SUPPORT
NETWORKS AND WHEN I SAY FORMAL,
I'M REFERRING TO PAID NETWORKS,
SO THINGS THAT MIGHT HAVE EITHER
K-12 FUNDING OR GOVERNMENT
FUNDING OR FUNDING FROM
HEALTHCARE PROVIDERS OR PRIVATE
PAY, INFORMAL SOCIAL SUPPORT
NETWORKS, IF I DO USE THAT TERM,
IT WILL SIMPLY REFER TO OUR
UNPAID NETWORKS.
SO ANY SUPPORT THAT UP WI ONE MT
RECEIVE FROM A FAMILY MEMBER, A
FRIEND, THOSE KIND OF NEIGHBORS
THROUGHOUT ONE'S COMMUNITY,
THOSE PIECES.
SO I JUST WANT TO GIVE VOICE.
THERE IS A LOT OF SUPPORT
GROUNDED IN MANY RESEARCHERS'
WORK AS WELL AS MY OWN ON THE
VALUE OF INFORMAL SOCIAL SUPPORT
NETWORKS WHILE THESE ARE
FAMILIES, FRIENDS, COMMUNITIES,
I DO THINK OUR PAID NETWORKS CAN
HAVE A REALLY POWERFUL
OPPORTUNITY TO HELP FAMILIES
LEVERAGE INFORMAL SOCIAL SUPPORT
NETWORKS AND THERE IS A LOT OF
SUPPORT TO REALLY LOOK AT THE
EFFICACY BEHIND THAT AS WELL AS
BENEFITS FOR BOTH AUTISTIC
ADULTS AS WELL AS FAMILY
CAREGIVERS.
IN TERMS OF AUGMENTING QUALITY
OF LIFE, FAMILY QUALITY OF LIFE
AND THOSE ASPECTS.
SO THE FIRST THEME I MENTIONED
IS THIS NEED FOR TAYLORED
ACCESSIBLE SERVICES.
WHAT WE'RE SEEING AND WHAT I'VE
SEEN FOR THE LAST 20 YEARS
WORKING IN THE PUBLIC SCHOOLS AS
WELL NOW IN A PART-TIME CAPACITY
THROUGH A SPECIAL EDUCATION
SYSTEM IS THAT THERE'S A
SERVICES CLIFF AND WE KNOW THIS,
IT'S BEEN LONG DOCUMENTED.
WE KNOW WHEN WE START TO LOOK AT
DISABILITY SERVICES, SERVICES
TAILORED FOR INDIVIDUALS WITH
AUTISM, AND ALSO WHEN WE START
TO THINK ABOUT SERVICES THAT
MIGHT BE REALLY KIND OF THE
GO-TO AREAS FOR INDIVIDUALS AS
THEY AGE ACROSS THE LIFESPAN
WITH A DISABILITY, SO SOME OF
THESE PERHAPS BEING AGING
SERVICES, THERE IS A SERVICE
CLIFF AND SERVICES REALLY ARE
NOT TAILORED FOR AUTISTIC
ADULTS.
THIS ONE SIZE FITS ALL APPROACH,
I THINK A LOT OF TIMES WE'RE
SEEING THIS YOU BE FORTUNATELY,
AND WE KNOW THAT THE SERVICES
THAT ARE HENCE BEING DELIVERED
ARE OFTEN NOT RELEVANT, ARE THE
SERVICES FAMILIES ARE CALLING
ABOUT, FAMILIES AND AUTISTIC
ADULTS ARE OFTENTIMES VERY
FRUSTRATED ABOUT AS WELL.
FAMILIES ARE OFTEN TALKING ABOUT
INAPPROPRIATE GROUPINGS, SO
PERHAPS THEY'RE ADULTS, CHILD
WITH AUTISM MIGHT BE ACCESSING
SERVICES THAT ANOTHER POPULATION
THAT'S REALLY NOT TOTALLY
RELEVANT IS ALSO ACCESSING THOSE
SAME SERVICES AND HENCE
OFTENTIMES OUR PROVIDERS ARE
REALLY TAXED WITH TRYING TO
UNDERSTAND A WHOLE SERIES OF
DIFFERENT BACKGROUNDS AND
EXPERIENCES AND DISABILITIES AND
STRENGTHS AND NEEDS.
AND THAT'S SOMETIMES NOT
REALISTIC.
AND THEN OFTEN THIS MISMATCH
OCCURS BETWEEN THE CURRENT NEEDS
AND WHAT SERVICES AND SUPPORTS
DO EXIST.
AND SO THAT, WE'RE KIND OF
CONTINUING TO SEE AND THERE'S
SOME GREAT RESEARCH OUT IN
EUROPE AND I'VE INCLUDED THEIR
NAMES DOWN THERE AND SOME WORK
THAT WAS PUBLISHED IN 2023 THAT
REALLY TALK ABOUT THIS MISMATCH
AND CURRENT NEEDS AND SERVICES.
WE KNOW THAT JUVENILE SERVICES
ARE NOT A SOLUTION FOR
ADULTHOOD.
OFTENTIMES WE SEE THIS A LOT
WITH HEALTHCARE, WHERE SOMEBODY
MIGHT EVEN TRY TO REMAIN WITHIN
A PEDIATRIC HEALTHCARE KIND OF
SETTING IF YOU WILL SA, SEEING A
PEDIATRICIAN LONGER BECAUSE THAT
PEDIATRICIAN IS WELL VERSED,
UNDERSTANDS OFTENTIMES, AND I'VE
WORKED EVEN CLINICALLY WITH
CLIENTS WHO HAVE SAID I'M A
DISABLED ADULT, AND PEOPLE
FORGET THAT EVEN THOUGH MY
CONDITION IS A JUVENILE-ONSET
CONDITION, THAT THAT CONDITION
CAN PURR SATELLITE PERVADE INTO.
SO THOSE ARE OFTENTIMES THINGS
THAT PEOPLE ARE IMR GRAPPLING WH
THAT MAKES THEIR DAILY LIFE
CHALLENGING AND CERTAINLY TIES
BACK TO SOME OF THE CHALLENGING
RELEVANT IN COORDINATED SERVICES
BUT ALSO WITH JUST PEOPLE EVEN
UNDERSTANDING THEM THAT WHOLE
SERVICE NAVIGATION PIECE.
SO I WANT TO JUST UNDERSCORE
JUST FOR A BRIEF MINUTE, BECAUSE
THIS IS SOMETHING THAT CONTINUES
TO COME UP BOTH IN THE WORK THAT
I DO FIRSTHAND WITH DISABLED
POPULATIONS, AND THEIR FAMILY
CAREGIVERS, BUT ALSO IN THE WORK
THAT I'VE DONE IN TALKING TO
FAMILIES ACROSS THE COUNTRY WHO
HAVE LOVED ONES WITH DIFFERENT
DISABILITIES INCLUDING ADULTS,
ADULT CHILDREN WITH AUTISM.
IT JUST THIS NEED FOR HEALTH
SERVICES AS WELL AS MENTAL
HEALTH SERVICES TO REALLY BE
TAILORED, AND SOMETIMES AT THOSE
MORE CRITICAL TIMES, WE'RE
SEEING DIFFERENT TIMES KIND OF
ACROSS THE LIFE TRAJECTORY WHERE
CERTAIN HEALTH SERVICES OR
MENTAL HEALTH SERVICES AND/OR I
SHOULD SAY REALLY BECOME REALLY
CRITICAL AND REALLY NEEDED AND
VERY TIMELY.
SO I JUST WANTED TO KIND OF MAKE
A NOD TO THAT BECAUSE IT'S
REALLY NO DIFFERENT FROM SOME OF
THE THINGS YOU'RE SEEING OR SOME
OF THE THINGS THAT FAMILIES ARE
SHARING THAT THOSE SERVICES ARE
REALLY CUMBERSOME AND REALLY
LABORIOUS.
ONE OF THE THINGS THAT STUCK OUT
WITH ME, A FEW YEARS BACK I
SPOKE WITH A WOMAN WHO HAPPENED
TO BE A PHYSICIAN, VERY WELL
VERSED WITH MEDICAL SYSTEMS, AND
SHE SAID AS SHE WAS ADVOCATING
FOR HER SON TO RECEIVE MENTAL
HEALTH SERVICES, HER SON, A
YOUNG ADULT WITH AUTISM, SAID IT
TACK ME BEING A DOUGH BERMAN
WITH LIPSTICK TO ADVOCATE FOR
THE SERVICES MY SON NEEDED.
THOSE WORDS STILL STICK WITH ME
AS TO HOW CUMBERSOME, HOW
LABORIOUS, HOW CHALLENGING, EVEN
WITH PEOPLE WHO WOULD BE -- YOU
DON'T LOOK -- LOOK AT THIS
HIDDEN CURRICULUM, THAT REALLY
ARE UNCOORDINATED.
AND I DON'T THINK I NEED TO GO
ON ABOUT THE WAIT LIST.
I THINK WE'RE ALL FAMILIAR.
SO IN SOME OF THE WORK I DID, I
TOOK SOME DIFFERENT MEDICAL
FRAMEWORKS AND I COLLAPSED THEM
AND CREATED BROAD THEMES OF MY
OWN AS WE START TO THINK ABOUT
WHAT IT LOOKS TO NAVIGATE
SERVICES, NOT ONLY HEALTH AND
MEDICAL, HEALTH MEDICAL/MENTAL
HEALTH SERVICES, BUT AS WELL AS
ANY SERVICES FOR AUTISTIC ADULTS
AND THEIR FAMILY CAREGIVERS.
SO I TALKED ABOUT THINGS LIKE
ACCOMMODATION, ACCEPTABLE,
AVAILABILITY AND AFFORDABILITY.
I DO HAVE A TABLE THAT'S
REFERENCED IN ONE OF THE LINKS
BELOW THAT I PUBLISHED WITH ONE
OF MY COLLEAGUES, DR. ARLENE
WEISS, BUT IN ESSENCE, HOW ARE
THE AVAILABLE OPTIONS ORGANIZED?
THIS CONTINUES TO BE
PROBLEMATIC, THIS CONTINUES TO
BE UNCOORDINATED.
HOW ACCEPTABLE DO PEOPLE FEEL
THAT THESE ARE?
I CONTINUE TO HAVE CONVERSATIONS
WITH YOUNG ADULTS WITH AUTISM
WHO OFTEN SAY, HEY, DR. T., I'M
NEVER GOING TO ACCESS THESE
SERVICES, THESE ARE NOT RELEVANT
TO ME.
AND I APPRECIATE THAT.
AND SO HOW DO WE START TO THINK
ABOUT HAVING SERVICES THAT BOTH
FAMILY CAREGIVERS AND AUTISTIC
ADULTS DO FIND ACCEPTABLE, AND
DO FIND SOMETHING WORTHY OF
THEIR TIME TO EVEN INVEST IN
TERMS OF A PHONE CALL TO LOOK
INTO.
IN TERMS OF AVAILABILITY,
THERE'S ALL SORTS OF VAIBILITY
AVAILABILITY ISSUES THAT WE'VE
PUBLISHED IN SOME OF THE
ARTICLES THAT MYSELF AND MY
COLLEAGUES HAVE WRITTEN, BUT
WAIT LIST, GEOGRAPHIC REACH,
EVEN ACCESSIBLE IN TERMS OF AS
WE START TO THINK ABOUT OUR
FOURTH NAME HERE IS
AFFORDABILITY.
OFTENTIMES SOME OF THE SERVICES
REALLY ARE NOT AFFORDABLE, AND A
LOT OF THE FAMILIES WHO ARE
SUPPORTING IN ANY WAY,
PRAGMATICALLY, TANGENTIALLY,
FINANCIALLY, IN ANY WAY, AS
LOVED ONES AND AUTISTIC ADULTS
HAVE REALLY INVESTED A LOT OF
TIME AND MONEY AND ENERGY AND SO
THERE'S ONLY SO MUCH IN TERMS OF
FINANCES THAT WE CAN BE -- THAT
CAN BE OFFERED.
ALL RIGHT.
SO I JUST ALSO WANT TO MENTION
THIS BIDIRECTIONAL RELATIONSHIP.
ANYTHING WE CAN DO TO SUPPORT A
FAMILY CAREGIVER.
I HOPE AND BELIEVE THAT IN MANY
WAYS WE'RE GOING TO SEE THE
FRUITS AND THE BENEFITS FOR
OTHER FAMILY MEMBERS INCLUDING
AUTISTIC ADULTS.
AND ANYTHING WE CAN DO TO
SUPPORT ADULTS WITH AUTISM,
FAMILY CAREGIVERS ARE OFTENTIMES
MUCH MORE SUPPORTED AND THERE'S
A BETTER BALANCING OF NEEDS.
THE SECOND THEME JUST AS WE
START TO THINK ABOUT SUPPORT
WITH NAVIGATION, I'M GOING TO
TALK BRIEFLY, I'M A BIG FAP OF
FAMILY SUPPORT NAVIGATOR
PROGRAMS WHEN THEY'RE DONE
RIGHT, WHEN PEOPLE HAVE THE
RIGHT TRAINING, WHEN THEY'RE
ACCESSIBLE AND WHEN THEY'RE
REALLY TAILORED TO THE NEEDS OF
THAT INDIVIDUAL.
MY COLLEAGUES AND I RECEIVED A
GRANT AND WE HAD A TWO-YEAR
PROGRAM AND WE CREATED A FAMILY
SUPPORT NAVIGATOR MODEL HERE IN
THE STATE OF MICHIGAN, WHICH IS
THE STATE I RESIDE, AND THIS WAS
DONE DURING COVID, SO THERE'S
THAT, WE CAN SAY IN TERMS OF
JUST SOME NEW THINGS THAT MIGHT
HAVE POPPED UP AND SOME NEW
SERVICES AND SUPPORTS AND KIND
OF INNER WORKINGS THAT MIGHT
NEED TO BE WORKED THROUGH DUE TO
KIND OF THE TIME, IF YOU WILL.
BUT WE KNOW THAT NAVIGATING
SERVICES IS PROBLEMATIC, IT'S
VERY TIME-CONSUMING.
THERE'S A LOT OF DERCH SERVICE T
SERVICE AREAS.
A LOT OF THE WORK THAT I DO, I
REFER TO IT AT BOUTIQUE
SHOPPING.
ALL THE EUROPEANS OFTEN KNOW
WHAT A BOUTIQUE IS, THEY LOVE
BOUTIQUES, THEY HAVE THE BEST
BOUTIQUE THERE, SO I'VE STARTED
EU R USING THIS TERM AS THAT WE
ARE UNFORTUNATELY IN THIS
COUNTRY REALLY FORCING OUR
FAMILY CAREGIVERS AND OUR
DISABLED POPULATIONS TO BOUTIQUE
SHOP.
WE HAVE TO GO HERE FOR HEALTH,
WE HAVE TO GO HERE FOR MENTAL
HEALTH, WE HAVE TO GO TO ANOTHER
PLACE FOR ANY FORM OF EMPLOYMENT
SUPPORTS, THEN THE HOUSING
SUPPORTS.
BY THE TIME YOU GET THERE,
YOU'RE JUST SO TIRED.
SO THIS CONCEPT OF BOUTIQUE
SHOPPING, ANYTHING WE CAN DO TO
MITIGATE THE OPPORTUNITY THAT
THIS WOULD BE A REALITY FOR
FAMILY CAREGIVERS AND AUTISTIC
ADULTS WOULD BE REALLY,
REALLY -- REALLY -- REALLY,
REALLY HELPFUL.
AND THEN FINALLY, JUST THIS
THOUGHT OF WHENEVER POSSIBLE,
AND TO WHATEVER EXTENT IT
ACTUALLY MAKES SENSE AND CAN BE
EFFECTIVE, IS JUST LOOKING HOW
DO WE OFFER COORDINATED SYSTEMS
AND COORDINATED SERVICES SO
SOMEBODY DOESN'T HAVE TO GO TO
ALL OF THESE OTHER PLACES.
SO I HAVE JUST A LITTLE BIT OF
INFORMATION HERE ABOUT THE
FAMILY SUPPORT NAVIGATION
PROGRAM WHERE WE HAD PEERS, SO
FAMILY CAREGIVERS WHO HAD
DISABLED ADULT CHILDREN WHO WERE
FAMILIAR GEOGRAPHICALLY, AND I
THINK THAT WAS A BIG KEY, AND
THOSE CAREGIVERS WERE TRAINED
NOT ONLY ON SERVICES FOR DIGS
ABLED POPULATIONS BUT ALSO THE
AGING SERVICES, BECAUSE
OFTENTIMES AS WE MOVE KIND OF
ACROSS THE LIFESPAN, SOME OF
THESE OTHER SERVICES WILL BECOME
VERY RELEVANT, SO AS WE START TO
THINK ABOUT OUR EYE ON THE
FUTURE REALLY KIND OF THINKING
ABOUT HOW DO WE START TO ADVANCE
BOTH OUR SERVICES FOR
POPULATIONS WITH IDDs, OR
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES, BUT ALSO FOR THOSE
WHO ARE AGING AND HOW DO WE
START TO ALMOST CROSS TRAIN
THOSE PROFESSIONALS AND
PROVIDERS SO THEY'RE REALLY
AWARE WHEN NECESSARY OF THE TWO
AREAS.
ONE OF MY FAVORITE RESEARCHERS
IS DR. TAMARA HELLERIN, IF
YOU'VE EVER HEARD HER SPEAK,
SHE'S OUT OF CHICAGO, BUT HOW WE
OFTEN SEE AGING AS NOT RELEVANT
TO PEOPLE WITH LIFELONG
DISABILITY, AND I THINK THAT'S A
REAL ISSUE AS WE START TO THINK
ABOUT OUR SERVICES AND WE START
TO THINK ABOUT WHAT'S EVEN
OFFERED IN AREA AGENCIES AND
AGING ON THINGS LIKE THIS.
SO I WANT TO MAKE A NOD TO THAT
AS WELL THAT THAT CAN BE REALLY
IMPORTANT AND EFFECTIVE.
THE OTHER THING JUST AS WE START
TO THINK ABOUT PEER NAVIGATION
SUPPORTS, MANY OF OUR FAMILY
CAREGIVERS ARE NOT SOLELY CARING
FOR ONE LOVED ONE.
SO AS THEIR CHILDREN AGE INTO
ADULTHOOD, EMERGING ADULTHOOD,
WHATEVER WE WANT TO CALL IT,
THOSE INDIVIDUALS, THOSE FAMILY
CAREGIVERS MAY ASSUME OTHER
CAREGIVING ROLES, SO I HAVE A
TRAJECTORY OF RESEARCH THAT'S
PUB RISHED ON COMPOUND
CAREGIVING.
I WANT TO MENTION BECAUSE MANY
OF OUR CAREGIVERS ARE JUGGLING
THE PROVISION OF CARE FOR
MULTIPLE LOVED ONES, AND THOSE
MULTIPLE LOVED ONES WILL
OFTENTIMES HAVE VERY DIFFERENT
NEEDS, SO I THINK THAT REALLY
SHOULD OFTEN BE GIVEN VOICE AS
WE START TO THINK ABOUT AND
CONTEXTUALIZE THE EXPERIENCES OF
FAMILY CAREGIVERS OF AUTISTIC
ADULTS.
AND FINALLY, OUR THIRD THEME,
JUST THIS NEED TO LOOK TO THE
FUTURE.
AS WE START TO LOOK EVEN AT
WHERE THE FUNDING IS ALLOCATED
AS WE START TO THINKING ACROSS
THE LIFESPAN FOR INDIVIDUALS,
YOU KNOW, FAMILY CAREGIVERS AS
WELL AS AUTISTIC ADULTS, I THINK
WE NEED TO KIND OF PUSH THE
NEEDLE A LITTLE BIT.
WE NEED TO CONTINUE TO DO THIS
AND LOOK TO THE FUTURE.
I LOVED WHEN DR. JENNIFER
JOHNSON MENTIONED ADVANCED CARE
PLANNING BECAUSE I THINK THAT
THERE'S A LOT OF OPPORTUNITY
WITHIN ADVANCED CARE PLANNING.
AS I MENTIONED MY COLLEAGUE
DR. JACKIE MAGINLEY AND I DID A
NATIONAL OVERVIEW KIND OF
LOOKING AT WHAT'S GOING ON
ACROSS THE COUNTRY BY STATE,
LOOKING AT M POLICY ANALYSIS OF
PERSON-CENTERED PLANS AND
LACKING TO SEE IF THOSE PLANS
ARE EMBODYING THE ELEMENTS AND
DIMENSIONS OF ADVANCED CARE
PLANNING.
WE'RE SEEING IT KIND OF SPARSELY
DONE IN DIFFERENT -- DONE IN
DIFFERENT WAYS KIND OF ACROSS
THE COUNTRY, AND ONE OF THE
RECOMMENDATIONS FROM SOME OF
THOSE PUBLISHED PIECES IS SIMPLY
MANY AUTISTIC ADULTS WILL HAVE
PERSON-CENTERED PLAN, NOT ALL,
BUT FOR THOSE WHO ARE RECEIVING
MEDICAID, THIS IS A REQUIREMENT
AND THERE'S A REQUIREMENT THAT
THOSE PERSON-CENTERED PLANS BE
REVISITED AND A SPECIFIC
DESIGNATED TIME PERIOD.
AND HENCE, WE COULD BE LOOKING
AT ADVANCED CARE PLANNING IN
VERY RESPECTFUL WAYS AND IT
COULD BE EMBODIED WITHIN THE
PERSON-CENTERED PLANNING.
SO AS WE START TO THINK BACK TO
THE SAME THREE, THIS NEED TO
PLAN FOR THE FUTURE, THIS IS FOR
BOTH FAMILY CAREGIVERS AND
AUTISTIC ADULTS.
AND I THINK SOMETIMES WHEN
FAMILIES FEEL THAT THEY HAVE A
BETTER PLAN, I KNOW FOR MYSELF,
PROBABLY FOR ALL THE PEOPLE THAT
I KNOW, WHEN WE HAVE BETTER
PLANS, THINGS JUST GO SMOOTHLY
EVEN IF THEY GO A LITTLE BIT OFF
THE PLAN.
SO OUR FAMILIES WILL AND DO HAVE
CHANGING AND EVOLVING NEEDS, AND
THOSE NEEDS WILL CHANGE FOR BOTH
THE FAMILY CAREGIVER AS WELL AS
ADULTS WITH AUTISM.
SO I THINK WE REALLY NEED TO
HAVE A PULSE ON THAT TO NOT ONLY
BE THINKING ABOUT THE HERE AND
NOW BUT ALSO PROACTIVELY LOOKING
TOWARDS THE FUTURE WITH WHAT CAN
WE DO IN TERMS OF OUR PLANNING
FOR THOSE THAT WILL REQUIRE SOME
FORM, AND SAY SOME FORM BECAUSE
IT CAN LOOK VERY, VERY DIFFERENT
BUT SOME FORM OF CAREGIVING
SUPPORT, BEING ABLE TO OFFER
THAT AS WELL.
SO I'M GOING TO WRAP UP HERE.
I DO HAVE SOME THEMES HERE FROM
AN ARTICLE THAT MY COLLEAGUE DRI
PUBLISHED ON THE NEED FOR
SUPPORT AND SOME OF THE BARRIERS
FAMILIES ARE EXPERIENCING THAT
WOULD REALLY MAKE IT DIFFICULT
TO MOVE FORWARD IN FUTURE
PLANNING.
SO IN TERMS OF JUST PROFESSIONAL
IMPLICATIONS AND THEN I'LL TALK
VERY BRIEFLY ABOUT POLICY
IMPLICATIONS, BUT CAREGIVING
CERTAINLY CAN VARY IN LENGTH,
DURATION, INTENSITY, BUT THERE'S
CERTAINLY A NEED TO CONTINUE TO
THINK ABOUT HOW DO WE SUPPORT
THE PRACTICAL NEEDS OF LIFE, AND
CERTAINLY THE SERVICE NAVIGATION
PIECE IS PART OF THAT.
WHEN WE START TO THINK ABOUT THE
PRAGMATICS, AND THEN JUST
CONTINUING TO RECOGNIZE THE
NEEDS AND THE ABILITY FOR
CAREGIVERS TO BE ABLE TO BALANCE
THEIR OWN NEEDS AS WELL AS THE
NEEDS OF THEIR LOVED ONES AND
THEIR OWN FAMILY CONTEXT.
SO OUR PROGRAM, SERVICES SUPPORT
AND POLICIES REALLY SHOULD AIM
TO DEVELOP SYSTEMS, STRUCTURES,
PATHWAYS THAT MAKE MORE
ACCESSIBLE INCLUSIVE AND
EQUITABLE OPPORTUNITIES FOR BOTH
AUTISTIC ADULTS AND THEIR FAMILY
CAREGIVERS.
AND SO JUST AS A RECAP, I'VE
INCLUDED THOSE THREE THEMES THAT
I TALKED ABOUT BUT FIRST THAT
NEED FOR TAYLORED ACCESSIBLE
SERVICES, SO IF WE GO BACK TO
THAT COORDINATION OF SERVICES,
WE DON'T WANT PEOPLE TO BE
BOUTIQUE SHOPPING, IF YOU WILL,
AND HAVING TO DO THAT AND THAT
GETS HARD AND LABORIOUS AND WE
CAN GO INTO KIND OF A NIGHTMARE
OF THAT.
TWO, SUPPORT FOR FORMALIZED
SERVICE NAVIGATION.
AND THREE, THIS NEED TO LOOK
FORWARD THE FUTURE AND PLAN FOR
THE FUTURE AS OUR FAMILY
CAREGIVERS, THEIR NEEDS WILL
CHANGE, AND THEIR LOVED ONES'
NEEDS WILL CHANGE AS WELL.
SO CERTAINLY FUNDING NEEDS
PROGRAMMATIC STRUCTURE AND
SERVICE NEEDS AND REALLY THIS
PIPELINE OF PROVIDERS AND
TRAINING NEEDS ALSO COMES INTO
PLAY.
I JUST WANT TO THANK YOU FOR THE
OPPORTUNITY TO BE HERE.
I HAVE SOME INFORMATION ABOUT
MYSELF IF THAT'S EVER OF HELP
AND MY REFERENCE IS AT THE BACK,
BUT THANK YOU FOR THAT
OPPORTUNITY TO BE HERE.
>> THANK YOU SO MUCH, DR. M
DR. MARSACK.
WE DO HAVE MATERIALS FOR EACH OF
THE SPEE ONLINE ON OUR WEBSITE,
IN CASE ANYONE WANTS TO CHECK
THOSE OUT.
AND NEXT I'LL INTRODUCE OUR NEXT
SPEAKER, DR. ELIZABETH MORGAN,
WHO'S GOING TO BE TALKING ABOUT
HER WORK WITH AFRICAN AMERICAN
FAMILY CAREGIVERS, AND SHE'S
CURRENTLY IN THE COLLEGE OF
EDUCATION AT CALIFORNIA STATE
UNIVERSITY IN SACRAMENTO, AND
SHE WILL BE SOON TRANSITIONING
TO A NEW POSITION AS ASSOCIATE
PROFESSOR AT MORGAN STATE
UNIVERSITY.
SO WELCOME, DR. MORGAN.
>> THANK YOU VERY MUCH.
I'M GOING TO TRY TO PUT MY TIMER
ON AND AS WELL AS READ SOME OF
MY NOTES BECAUSE I AM AN
EDUCATOR, SO MY PROFESSION TENDS
TO BE QUITE LOW QAIS LOQUACIOUS.
I'M EXTREMELY HONORED FOR BEING
INVITED TO BE ABLE TO SPEAK TO
YOU TODAY TO TALK ABOUT
SOMETHING I'M VERY PASSIONATE
ABOUT, AND THE SHARED PASSION
THAT WE HAVE ON THE TOPIC OF
ADVOCACY AND RESEARCH IN AUTISM.
I'M GOING TO SPEAK SPECIFICALLY
ON THE TOPICS OF THE
INTERSECTION OF RACE AND
DISABILITY IN THE CONTEXT OF
SUPPORTING BLACK FAMILIES WHO
HAVE BLACK CHILDREN ON THE
AUTISM SPECTRUM.
SO YOU GOT A LITTLE BIT OF
BACKGROUND ABOUT ME.
I ALSO SHOULD ADD THAT I HAVE
BEEN A PROGRAM COORDINATOR AND
ALSO A FAMILY LEND DIRECTOR FOR
OUR U.C. DAVIS LEND, EXCELLENCE
IN DEVELOPMENTAL DISABILITY,
SINCE 2014 AND ALSO BEEN A PART
OF THE ACD NETWORK AROUND THAT
SAME TIME.
BUT OUT OF ALL OF THOSE
POSITIONS, I WOULD SAY THE MOST
IMPORTANT ONE HAS TO DO WITH MY
POSITION AS MOTHER.
AND I AM A PROUD MOTHER OF A
CHILD ON THE AUTISM SPECTRUM.
I REALLY THINK THAT BY
POSITIONALITY IN PARTICULAR IS
VERY IMPORTANT WHEN WE'RE
TALKING ABOUT THIS TOPIC.
MY BACKGROUND AS A TEACHER AND
ALSO A K-8 ADMINISTRATOR REALLY
SETS THE TONE FOR THE WAY THAT I
PRESENT AND THE WORK THAT I DO.
AND IT WAS AS A TEACHER AND
ADMINISTRATOR IS WHEN I FIRST
REALLY EXPERIENCED THE
CHALLENGES THAT PARENTS AND
SCHOOL ADMINISTRATORS HAD WHEN
IT CAME TO NAVIGATING SCHOOL
SYSTEMS FOR THEIR CHILDREN WHO
HAD LEARNING DIFFERENCES AND
SOCIAL DIFFICULTIES.
AND THEN IN 2010, WHEN MY OWN
SON WAS DIAGNOSED TO BE ON THE
AUTISM SPECTRUM AT 2 1/2 YEARS
OLD, I WOULD SAY THIS FLAME
BECAME A WILDFIRE, AND IT
BROUGHT ME TO WHERE I AM TODAY.
SO NOW LET'S REALLY TALK ABOUT
THE STARK REALITIES THAT BLACK
FAMILIES HAVE IN ADVOCATING FOR
THEIR CHILDREN ON THE AUTISM
SPECTRUM.
SO THERE ARE CULTURAL AND SOCIAL
STIGMAS THAT ARE CAST ON THIS
JOURNEY.
ADDING LAYERS OF COMPLEXITY TO
AN ALREADY CHALLENGING PATH,
ACCESS TO RESOURCES AND SUPPORTS
BECOMES A BATTLEGROUND WHERE
SYSTEMIC INEQUALITIES OFTEN
LEAVE FAMILIES WITHOUT THE TOOLS
THEY NEED TO THRIVE.
NAVIGATING SYSTEMS, BE IT
EDUCATION, HEALTHCARE OR
COMMUNITY SERVICES, CAN FEEL
LAKE AN UPHILL BATTLE AGAINST --
ENTRENCHED BIAS AND BARRIERS.
SO WE HAVE LOTS OF RESEARCH ON
THE DISPARITIES FOR BLACK
FAMILIES AND SPECIFICALLY BLACK
FAMILIES OF CHILDREN WHO HAVE
DEVELOPMENTAL DIFFERENCES, BUT I
WAS FAR MORE INTERESTED IN THE
ASSET AND SO I'M GOING TO TALK
TO YOU A LITTLE BIT MORE ABOUT
THAT TODAY.
SO THE WORK THAT I WILL FOCUS ON
TODAY REALLY FOCUSES -- REALLY
CENTERS ON THE RESEARCH THAT
I'VE DONE, THREE PROJECTS IN
PARTICULAR THAT I WILL
HIGHLIGHT.
THE FIRST PAPER WAS PUBLISHED IN
THE JOURNAL PEDIATRICS, WHICH
WAS A COMMUNITY COLLABORATIVE
WORK THAT I DID WITH TWO
ADVOCATES WITHIN THE FIELD
REALLY FOCUSES ON HOW THE
INTERSECTIONALITY OF RACE AND
DISABILITY PLAY IN OUR SERVICE
DELIVERY SYSTEMS AND GOES DEEPER
INTO THE HISTORICAL IMPRINT THAT
BLACK ACTIVISTS AND CIVIL RIGHTS
LEADERS HAVE PLAYED IN THE
DISABILITY RIGHTS MOVEMENT.
THIS NEXT PAPER WHICH WAS
PUBLISHED IN THE BRITISH JOURNAL
OF SOCIOLOGY OF EDUCATION
FOCUSES ON AND HIGHLIGHTS THE
FAMILIES, THE ACTUAL MOTHERS.
I INTERVIEWED A BLACK MOTHER SO
I UNDERSTAND MORE ABOUT THEIR
EXPERIENCE ABOUT NAVIGATING THE
SERVICE SYSTEM, SPECIFICALLY
SCHOOL SYSTEMS, TO BE ABLE TO
THINK ABOUT THEIR ASSETS AND HE
LEARNED MORE ABOUT THE ASSETS
THAT THEY HAVE IN THEIR ADVOCACY
JOURNEY.
SO THE BOTTOM LINE TO THIS
PARTICULAR STUDY IS THAT THESE
BLACK MOTHERS WERE ABLE TO
NAVIGATE FOR THEIR CHILDREN AND
IT REALLY -- THAT CONTEXT WAS
KEY.
SO WHEN SCHOOLS WERE FAMILY
CENTERED AND THEY ENGAGED IN
FAMILY CENTERED PRACTICES, THEY
WERE ABLE TO USE THEIR ADVOCACY
STRAD GEES, THEIR ASSETS, TO BE
ABLE TO SUPPORT THEIR CHILDREN.
SO THAT'S A KEY PART OF THIS.
AND I THINK IN PARTICULAR IT WAS
MENTIONED THIS HIDDEN
CURRICULUM, ABSOLUTELY, IT IS A
HIDDEN CURRICULUM.
FOR SOME IT OPAQUE, IT'S A
LITTLE CLOUDY TO SEE, IT'S
REALLY HARD TO NAVIGATE.
YOU HAVE TO BE ABLE TO KNOW SOME
PEOPLE, POOL UPON RESOURCES AND
FOR SOME IT'S INVISIBLE.
AND IT ALMOST IS ERASED, WHERE
YOU HAVE TO DO SUPER HUMAN FEATS
IN ORDER TO BE ABLE TO
UNDERSTAND THESE REALLY COMPLEX
SYSTEMS.
SO JUST TO GIVE YOU A LITTLE BIT
MORE GROUNDING AND TO GIVE YOU
SOME CONTEXT TO THE TYPE OF
ASSETS THAT I WHAT LOOKING FOR
IN THIS PARTICULAR PROJECT, I
PULLED UPON SOME THEORETICAL
FRAMEWORKS TO HELP GIVE ME -- TO
REALLY SITUATE IT AND THESE
CULTURAL CAPITAL AND COMMUNITY
CAPITAL.
SO BECAUSE I'M A TEACHER AT
HEART I'M GOING TO GIVE YOU A
FEW VISUAL ILLUSTRATIONS JUST TO
MAKE IT PLAIP.
MAKE IT PLAIN.
WE THINK ABOUT CULTURAL CAPITAL
AS SOCIETAL ASSETS THAT GROUPS
OF PEOPLE HOLD.
SUCH AS THEIR EDUCATION, THEIR
PEDIGREE.
THIS IS THE CLASSIC DEFINITION
OF CULTURAL CAPITAL THAT SOCIAL
YOL GISTS HAVE USED FOR YEARS,
SO IT LOOKS SOMETHING LIKE THIS.
YOU ARE BORN WITH A GROUP OF
ASSETS, MAYBE YOU'RE THE PIGGY
ON TOP, YOU HAVE RESOURCES, YOU
HAVE THINGS THAT YOU ARE BORN
IN, THE TRANSMISSION OF STATUS
IN POWER HAS BEEN SPAED COU PAS.
OR YOU ARE SOMEONE THAT'S BORN
WITH NONE, RIGHT?
SO YOU'RE LIKE THIS BROKE PIGGY
BANK.
IT'S REALLY SIMPLE.
YOU EITHER HAVE IT OR YOU'RE NOT
OR YOU DON'T WHEN IT COMES TO
THAT BASIC DEFINITION.
SO I ALSO PULLED UPON THIS
COMMUNITY CULTURAL WEALTH
FRAMEWORK THAT REALLY LOOKS AT
THE ASSETS THAT COMMUNITIES OF
COLOR IN PARTICULAR HAVE THAT
ARE TRANSMITTED AND TRANSLATABLE
INTO RESOURCES AND SUPPORTS FOR
COMMUNITIES OF COLOR.
THESE ARE CAPITAL THAT ARE OFTEN
UNACKNOWLEDGED AND UNRECOGNIZED
IN COMMUNITIES OF COLOR AND ARE
ACTIVE IN INTERNAL RESOURCES FOR
VEHICLES FOR MOBILITY.
SO AN EXAMPLE FOR THIS WOULD BE
THIS PICKY.
MISS PIGGY IS ABLE TO NAVIGATE
HOSTILE ENVIRONMENTS, ENTRENCHED
WITH SYSTEMIC INSTITUTIONAL AND
SOCIETAL OPPRESSIONS.
SO I WON'T GO TOO FAR INTO THE
DETAILS BUT JUST TO GIVE YOU
SOME UNDERSTANDING, THE SPECIFIC
CAPITALS THAT I WAS LOOKING FOR
IN THE INTERVIEWS WITH THE
MOTHERS INCLUDED SOME OF THESE
THEORISTS.
SO THIS PARTICULAR THEORY IS THE
COMMUNITY CULTURAL WEALTH MODEL
AND THERE ARE SIX CAPITALS.
I'M GOING TO HIGHLIGHT TWO OF
THEM BECAUSE THESE WERE THE MOST
SALIENT IN THE RESEARCH.
SO RESISTANCE CAPITAL REFERS TO
THE SKILLS AND ACKNOWLEDGES
FOSTERED THROUGH OPPOSITIONAL
BEHAVIOR AND CHALLENGES AND
INEQUITY.
NAVIGATIONAL CAPITAL REFERS TO
THE SKILLS OF MANEUVERING
THROUGH SYSTEMS THAT ARE BUILT
IN INSTITUTIONS THAT ARE BUILT
WITH YOU NOT IN MIND.
SO WE KNOW FOR SCHOOLS AND
PARTICULAR FOR BLACK FAMILIES OR
BLACK PEOPLE THAT SCHOOLS WERE
NOT BUILT FOR US IN MIND, BROWN
V. BOARD IS A REASON WHY WE ARE
INCLUDED IN THESE INSTITUTIONS,
SO THIS IS AN EXAMPLE OF THOSE
THINGS.
SO I ALSO PULLED UPON SOME OTHER
THEORISTS TO BE ABLE TO GIVE US
SOME CONTEXTS.
SO JUST TO HIGHLIGHT MARTIN
LUTHER KING-CHANG LO'S WORK FROM
U.C. DAVIS SPECIFICALLY LOOKING
AT MOTHERHOOD CAPITAL.
BECAUSE I LOOKED AT SINGLE BLACK
MOTHERS, AND HER WORK
SPECIFICALLY LOOKED AT 25 LOW
INCOME MEXICAN IMMIGRANT MOTHERS
AND HOW THEY WERE ABLE TO USE
THEIR ADVOCACY TO BE ABLE TO
NAVIGATE MEDICAL SYSTEMS TO BE
ABLE TO SUPPORT THEIR CHILDREN.
THEN DR. PRUDENCE CARTER'S WORK,
THEY LOOKED AT BLACK CULTURAL
CAPITAL THAT EXISTS IN VARIOUS
SPHERES AND THE ABILITY TOLL
FLUIDLY GO BETWEEN THESE THINGS.
IF YOU'VE EVER HEARD OF THE TERM
"CODE SWITCHING," SO IT'S THE
IDEA OF BEING ABLE TO UNDERSTAND
VALUES, NORMS AND PRACTICES THAT
BELONG TO DIFFERENT GROUPS AND
BE ABLE TO FLUIDLY GO IN BETWEEN
THOSE THINGS.
SO I WAS LOOKING AT THOSE THINGS
IN THE CONTEXT OF THE INTERVIEWS
FOR THE MOTHERS AND THEIR
EXPERIENCES.
THIS IS JUST A FEW -- A LITTLE
BIT OF DEMOGRAPHICS FROM MY
COLLABORATORS.
SO FOR THE FIVE THAT I WAS ABLE
TO INTERVIEW BY THE TIME I GOT
SATURATION, I WAS ABLE TO SEE
THAT THERE WERE SOME PATTERNS
THAT WERE COMING ABOUT AND I'LL
TALK TO YOU A LITTLE BIT ABOUT
THOSE.
SO JUST FOR -- MOST OF THE
MOTHERS WERE ON AVERAGE ABOUT 47
YEARS OLD, AND MOST CHILDREN
WERE ABOUT 10 YEARS OLD BY THE
TIME THAT I INTERVIEWED THEM.
ALL OF THEM, WHEN IT CAME TO
THEIR CHILD'S PLACEMENT IN
SCHOOLING, ALL OF THEIR CHILDREN
WERE IN ONE OF THE MOST
RESTRICTIVE ENVIRONMENTS.
SO THESE CHILDREN WERE ALL IN
DISABILITY SPECIFIC CLASSROOMS.
ONLY ONE OF THE MOTHERS WERE
ABLE TO ADVOCATE FOR THEIR CHILD
FOR A NON-DISABILITY CLASSROOM,
NOT UNTIL HIS JUNIOR HIGH --
WHETHER HE WAS IN JUNIOR HIGH.
I SHOULD GIVE YOU CONTEXT, THESE
PARENTS WERE NEVER OFFERED LEAST
RESTRICTIVE ENVIRONMENT, THEY
WERE NEVER OFFERED AN
OPPORTUNITY FOR INCLUSION, SO IT
WASN'T UNTIL THEY HAD KNOWLEDGE
THAT THIS WAS SOMETHING THAT WAS
IN THEIR RIGHTS, WITHIN THEIR
CHILD'S RIGHTS, THEY WERE ABLE
TO TRY TO ADVOCATE TO THIS AND
SOME WERE SUCCESSFUL.
SO LIKE I SAID I'LL HIGHLIGHT
JUST TWO PARTICULAR CAPITALS
THAT I THINK ARE REALLY
IMPORTANT IN JUST PULLED OUT AND
I WANT YOU TO HEAR THE VOICES OF
THE PARENTS.
SO THIS CAME FROM EVELYN.
RESISTANCE CAPITAL.
AND I WILL TELL YOU THIS.
THIS IS WHAT CAME THROUGH THE
YEARS STANDING UP TO PEOPLE IN A
ROOM THAT DON'T LOOK LIKE YOU.
IT REQUIRES YOU TO USE THE
KNOWLEDGE YOU HAVE.
IT REQUIRES YOU TO USE
UNDERSTANDING YOU HAVE.
IT REQUIRES YOU TO REALIZE TA
YOU GOT THIS.
AND YOU KNOW WHAT'S BEST FOR
YOUR CHILD.
SO THESE ARE SPECIFICALLY THE
TWO PIECES THAT WE'RE GOING TO
HIGHLIGHT AND THEN I'M GOING TO
TELL YOU HOW THEY MANIFEST
THEMSELVES.
SO 1/ NAVIGATIONAL CAPITAL IS TE
NEXT ONE.
JOSEPHINE SAYS I THINK IT WAS
HARDER BECAUSE I HAVEN'T SEEN A
LOT OF SINGLE BLACK WOMEN OUT
THERE.
IT REQUIRED ME TO REMOVE MYSELF
OUT OF THAT GRIEF STATE AND
REALIZE THAT I HAVE TO FIND OUT,
I HAVE TO FIGURE OUT WHAT'S
GONNA BENEFIT MY CHILD.
SO NOW LET ME JUST QUICKLY SEGUE
INTO RESEARCH INTO PRACTICE, SO
TRANSLATING THIS TO SPECIFICALLY
FOCUS ON OUR RESEARCH BASED MO
MODEL THAT HAS BEEN DEVELOPED IN
CALIFORNIA BUT ALSO HAVE BEEN
REPLICATED IN WISCONSIN.
AND THIS IS THE SANKOFA FAMILY
SUPPORT MODEL, A FRAMEWORK THAT
WE ACTUALLY HAVE DEVELOPED SINCE
2015.
IT HAS BEEN IMPLEMENTED AT THE
U.C. DAVIS MIND INSTITUTE SINCE
2015 AND NOW WE HAVE A FRAMEWORK
THAT WE ARE ABLE TO -- WE ARE IN
THE PROCESS OF BEING ABLE TO
DISTRIBUTE AND MAKE AVAILABLE TO
FAMILIES IN INSTITUTIONING AND
ORGANIZATIONS IN EARLY FALL.
SO IT SPECIFICALLY DESIGNED FOR
AND BY BLACK FAMILIES AND
PROVIDERS AND ALSO BLACK
FAMILIES AND PROVIDERS, AUTISTIC
BLACK FAMILIES AND PROVIDERS
THAT ARE TO BE ABLE TO GIVE US
INSIGHT INTO HOW TO BE ABLE TO
SUPPORT BARACK FAMILIES W BLACKE
NAVIGATING THESE SYSTEMS.
SO THIS IS A PAPER THAT YOU CAN
READ TO UNDERSTAND A LITTLE BIT
MORE OF THE BACKGROUND TO THIS
PARTICULAR SUPPORT GROUP AND
FRAMEWORK AND A MODEL.
THIS WAS A PAPER THAT WAS
WRITTEN BY ALL -- BY BLACK
MOTHERS AND PROVIDERS AND AS
WELL AS YO UCEDD DIRECTORS, BOTN
CALIFORNIA AND WISCONSIN AND ALL
DIRECTLY CONNECTED TO OUR GROUP.
SO THIS IS -- THESE ARE A FEW
EXCERPTS FROM THE PAPER AND THIS
ACTUALLY GIVES YOU -- THESE ARE
TWO OF THE MOTHERS WHO ARE
LEADERS IN SANKOFA.
ONE FROM BENITA SHAW, SHE STATES
SAN COFA IS A SPACE FOR BLACK
FAMILIES OF CHILDREN WITH
VARIOUS DISABILITIES TO COME AND
MEET OTHER FAMILIES, GET
MENTORED, LEARN SKILLS AND BE
VULNERABLE WITH PEOPLE THEY CAN
TRUST.
THEN IDA WINTERS WHO IS IN
WISCONSIN STATED, I WAS
FORTUNATE ENOUGH TO BE CONNECTED
WITH SANKOFA, I ATTENDED ONE
MEETING AND IT CHANGED MY LIFE.
SO SANKOFA IN A NUTSHELL IS A
GROUP THAT MEETS MONTHLY, NOW
VIRTUALLY, AND THE WHOLE PURPOSE
IS TO BE ABLE TO SUPPORT AND
PROVIDE CULTURALLY RELEVANT AND
SENSITIVE RESOURCES AND
TRAININGS AND SPACES FOR
FAMILIES WHO HAVE BLACK CHILDREN
WITH DEVELOPMENTAL DISABILITIES.
AND WE REALLY STRIVE TO BE
CULTURAL BROKERS AND CULTURAL
SUPPORTERS OF OUR COMMUNITY.
AND AS WELL AS ERASE STIGMA
ASSOCIATED WITH STABILITY WITHIN
OUR COMMUNITY.
SO I'M GOING TO GIVE YOU A FEW
TESTIMONIES FROM OUR SANKOFA
MEMBERS.
THIS IS VALERIE CRAWFORD, ONE OF
OUR MOTHERS.
I'LL GIVEN YOU JUST 10 SECONDS
TO READ IT.
JUST TO REALLY HIGHLIGHT THE
LAST PART OF HER SENTENCE, I
HAVE BECOME A STRONG ADVOCATE
FOR MY CHILD.
THAT'S THE GOAL, RIGHT, TO HAVE
THIS OPPORTUNITY FOR A PARENT
AND A CAREGIVER TO HAVE A SPACE
TO LEARN THEIR OWN ADVOCACY
STYLE, LEARN THEIR OWN WAY OF
BEING ABLE TO NAVIGATE THIS
SYSTEM AND HAVE THAT CONFIDENCE
TO BE ABLE TO DO SO.
I NEXT AM GOING TO GIVE YOU A
VIDEO FROM ONE OF OUR SANKOFA
MEMBERS, DIANE MILNER, AND SHE'S
GOING TO TALK SPECIFICALLY ABOUT
HOW SHE DESCRIBES THE NEED FOR
GROUPS LIKE SANKOFA AND BLACK
FAMILIES SO LET'S LISTEN A
LITTLE BIT TO DIANE AND GIVE A
LITTLE MORE CONTEXT.
>> SO I WANTED TO TALK A LITTLE
BIT ABOUT THE INTERSECTION
BETWEEN RACE AND DISABILITY AND
SPECIFICALLY AFRICAN AMERICANS.
WHAT I'VE FOUND THAT A LOT OF
AFRICAN AMERICANS ARE EAGER TO
GET INFORMATION AND SUPPORT FROM
EACH OTHER INCLUDING MYSELF.
BUT A LOT OF TIMES WE'RE NOT
PRIVY TO THE SOURCES OF
INFORMATION, SO WE HAVE TO HELP
EACH OTHER PROVIDE THAT.
SO FOR INSTANCE, I'VE ALREADY
PARTICIPATED IN PROBABLY THREE
OR FOUR OTHER GENERAL -- GENERAL
PARENT SUPPORT GROUPS THAT
INCLUDE ALL RACES AND THE
INFORMATION THAT I'VE LEARNED
HAS BEEN PHENOMENAL, BUT WHEN I
TALK TO OTHER -- MANY OTHER
PARENTS OF AFRICAN AMERICANS, A
LOT OF TIMES THEY DON'T KNOW
ABOUT THESE GROUPS, THEY DON'T
KNOW ABOUT THE INFORMATION AND
THEY ARE SO GRATEFUL AND EAGER
TO LEARN ABOUT IT.
SO IT'S REALLY A -- I THINK A
LACK OF INFORMATION AND
COORDINATION AND WE NEED TO
IMPROVE THAT AND THAT'S WHY
SANKOFA IS SO IMPORTANT.
ONE OF THE EXAMPLES, I THINK, OF
THE INTERSECTIONALITY OF RACE
AND DISABILITY INVOLVES MY
DAUGHTER.
SO MY DAUGHTER IS 32 YEARS OLD,
AND OVER THE YEARS, WE DIDN'T
REALLY KNOW THAT SOME OF THE
SYMPTOMS SHE EXHIBITED COULD
INDICATE THAT SHE HAS AUTISM.
SO SHE WAS NOT DIAGNOSED WITH
AUTISM UNTIL THIS YEAR, SO SHE
WAS 32 YEARS OLD, AND I'VE READ
IN THE LITERATURE THAT A LOT OF
AFRICAN AMERICAN CHILDREN ARE
DIAGNOSED ON THE AUTISM SPECTRUM
VERY LATE.
SO I DON'T KNOW IF IT'S
DELIBERATE, IF IT'S JUST
NEGLECT, IT'S PROBABLY A
COMBINATION OF BOTH, OR
IGNORANCE, BUT BECAUSE I DID NOT
KNOW THAT, I DIDN'T KNOW WHAT TO
LOOK FOR.
I WISH I HAD TALKED TO MORE
PEOPLE, I WISH I HAD HAD A GROUP
WHEN ASHLEY WAS A LOT YOUNGER SO
THAT I WOULD BECOME MORE
FAMILIAR WITH WHAT TO LOOK FOR.
AND I THINK IT'S IMPORTANT FOR
US TO SPREAD THE WORD TO OTHER
AFRICAN AMERICANS THAT THEY NEED
TO BE LOOKING FOR THESE SIGNS
AND ASKING QUESTIONS BECAUSE A
LOT OF TIMES PROFESSIONALS,
EDUCATORS, PROBABLY NOT
INTENTIONALLY BUT SOMETIMES
PROBABLY OUT OF NEGLECT DON'T
ALWAYS DIAGNOSE OUR CHILDREN IN
THE SAME LEVEL THAT THEY'VE
DIAGNOSED OTHER PEOPLE.
SO AGAIN, SANKOFA HAS BEEN
EXTREMELY HELPFUL TO ME.
SPREADING INFORMATION IN THE
BLACK COMMUNITY IS SO IMPORTANT,
AND I HIGHLY RECOMMEND IT.
>> SO DIANE IS ONE OF MANY
STORIES THAT WE HAVE OF POWERFUL
SANKOFA FAMILY ADVOCATES.
WE CELEBRATE OUR FAMILIES ALL
THE TIME BUT CELEBRATION REALLY
IS NOT ENOUGH.
WE MUST AMPLIFY THE VOICES OF
THE DISABILITY ADVOCACY
MOVEMENT, ENSURING THE BIPOC
COMMUNITIES' PERSPECTIVES SHAPE
THE POLICIES AND PRACTICES THAT
WE USE.
BUILDING SUPPORTIVE NETWORKS AND
COMMUNITIES BECOMES ESSENTIAL AS
WE RECOGNIZE THE COLLECTIVE
ACTION IS THE CATALYST FOR
MEANINGFUL CHANGE.
THE CORE OF OUR COLLECTIVE
MISSION MUST LIE IN THE
COMMITMENT TO PROMOTING
INCLUSIVITY AND EQUITY IN
DISMANTLING SYSTEMIC BARRIERS
THAT PERPETUATE INJUSTICE.
SO AS WE DRAW NEAR TO THE
CONCLUSION OF OUR JOURNEY
TOGETHER, LET'S REFLECT ON THE
PATH THAT WE TRAVERSE, IN THE
DREAM OF THE ROAD THAT LIES
AHEAD.
I URGE EACH ONE OF YOU WHO ARE
CALLED TO ACTION TO START AND
STAND IN SO TAIRT WITH THE BLACK
COMMUNITIES TO ADVOCATE FIERCELY
FOR EQUITY INJUSTICE AND TO
CHAMPION INCLUSIVITY IN EVERY
FACET OF SOCIETY.
THE DISPARITIES THAT WE SEE IN
DIAGNOSIS AND ACCESS ARE RED
FLAGS FOR THE EFFECTS OF
SYSTEMIC RACISM, SEXISM, ABLEISM
AND EVEN MORE AND THE
INTERSECTIONALITY OF OPPRESSED
GROUPS AND THUS TO CREATE CHANGE
WE MUST TAKE A LONG HARD LOOK IN
THE MIRROR AND THINK ABOUT HOW
OUR INSTITUTIONS AND PERSONAL
ATTITUDES HAVE FOSTERED AND
PERPETUATED THESE INEQUITABLE
SYSTEMS THAT EXIST TODAY.
WE MUST LOOK FOR CHANGE TO
CURRENT POLICIES AND FRAKESS ALL
LEVEL THE WHICH I HEAR YOU'RE
DOING THESE THINGS I'M EXCITE
TODAY SAY, SO REALLY LOOK AT HOW
TO BE ABLE TO ACCESS CARE SO
THAT IT IS NOT A FEAT BUT A
GIVEN RIGHT FOR EVERY PERSON
THAT IS IN NEED.
SO I THANK YOU VERY MUCH FOR
YOUR ENGAGEMENT AND YOUR
DEDICATION FOR CHANGE.
AND THIS IS HOW YOU CAN BE ABLE
TO REACH ME IF YOU'RE
INTERESTED, AND TOGETHER, YES,
WE CAN REDEFINE WHAT IT MEANS TO
BELONG.
THANK YOU.
>> THANK YOU SO MUCH,
DR. MORGAN.
APPRECIATE THAT PRESENTATION.
WE'LL TAKE ABOUT 10 MINUTES FOR
DISCUSSION.
I KNOW WE'RE SLIGHTLY BEHIND
SCHEDULE, BUT WE'LL TRY TO MAKE
UP THAT TIME THAT WAY.
SO SHELLI AND I CAN TAKE SOME
QUESTIONS.
JULIE?
>> I JUST HAD A QUICK COMMENT.
SO IN A COUPLE OF THE DIFFERENT
PRESENTATIONS, BY THE WAY, ALL
THE PRESENTATIONS WERE
EXCELLENT, SO THANK YOU,
EVERYBODY, FOR COMING HERE AND
TELLING US ABOUT THE WORK THAT
YOU'RE DOING AND WHAT'S GOING ON
IN YOUR DIFFERENT GROUPS OR
AGENCIES.
SOMETHING THAT CAME UP A COUPLE
OF TIMES IN THESE PRESENTATIONS
AND IN THE COMMENTS WAS THIS
IDEA OF THE HIDDEN CURRICULUM OF
ADULT SERVICES AND HOW HARD THAT
IS TO NAVIGATE.
SO I JUST WANTED TO LET YOU ALL
KNOW ABOUT A NEW RESOURCE THAT
IS GOING TO BE AVAILABLE THROUGH
OUR VANDERBILT UCCED VERY SOON,
WITHIN THE NEXT COUPLE MONTHS.
WE'VE DEVELOPED A 12-WEEK
PROGRAM THAT TEACHES ABOUT THE
ADULT SERVICE SYSTEM.
EACH WEEK GOES THROUGH A
DIFFERENT PIECE OF THE ADULT
SERVICE SYSTEM, WITH A REAL
FOCUS ON HOW ALL THE DIFFERENT
PIECES FIT TOGETHER AND HOW DO
YOU THINK ABOUT WHICH SERVICES
AND SUPPORTS AS A FAMILY
CAREGIVER ARE GOING TO BE THE
BEST FIT FOR YOUR SON OUR
DAUGHTER.
SO WE'VE BEEN WO WORKING ON THIS
FOR A WHILE.
WE'RE JUST WRAPPING UP A LARGE
RANDOMIZED CONTROL TRIAL WHERE
WE'VE TESTED OUT THIS CURRICULUM
IN THREE DIFFERENT STATES,
WISCONSIN, TENNESSEE AND
ILLINOIS, AND IT SEEMS TO BE
HELPFUL.
FAMILY CARE IMIFERS ARE CAREGIVG
THAT THEY KNOW MORE, IN FACT,
THEY DON'T REPORT THIS, WE TEST
THEM.
WE ACTUALLY GIVE THEM A MULTIPLE
CHOICE TEST AND THEY KNOW MUCH
MORE ABOUT ADULT SERVICES AFTER
TAKING THE PROGRAM AND WE'VE
EVEN SEEN EVIDENCE THAT IT
ACTUALLY IMPROVES SERVICE ACCESS
RELATIVE TO FAMILIES WHO ARE
BEGIN ALL THE INFORMATION IN A
BINDER.
SO WE ARE PACKAGING IT RIGHT NOW
PUTTING TOGETHER MAKING SURE IT
WILL BE AS EASILY ACCESSIBLE AS
POSSIBLE.
BUT OUR ATTEMPT IS TO TAKE THIS
HIDDEN CURRICULUM AND TRY TO
MAKE IT MORE TRANSPARENT, TRY TO
MAKE IT CLEARER.
IT'S NOT EASY, THE MATERIAL IS
NOT EASY AND IT'S A LOT, BUT WE
AT LEAST WANT PEOPLE TO KNOW
WHAT THE RANGES OF OPTIONS ARE
OUT THERE FOR THEM AND THEN HELP
CONNECT THEM TO THE PEOPLE THAT
CAN HELP THEM TAKE THE NEXT
STEP.
>> THANK YOU SO MUCH.
PLEASE DO SEND THAT INFORMATION
TO US, TOO.
WE'LL PUT IT IN OUR NEWSLETTER
WHEN IT COMES OUT.
I THINK IT WOULD BE RELEVANT TO
A LOT OF PEOPLE.
THANK YOU SO MUCH.
AND I AGREE THE PRESENTATIONS
WERE EXCELLENT.
AGAIN, THANK YOU.
ANYONE --
>> DENA HAS HER HAND UP ONLINE.
>> GO AHEAD.
>> YES.
I SECOND ALL OF THOSE, KUDOS FOR
GREAT PRESENTATIONS.
I DID JUST WANT TO BRING UP A
PERSONAL EXPERIENCE OF MINE.
MANY YEARS AGO, IN A STATE THAT
WILL REMAIN UNNAMED, I WAS IN
THE THROES OF OVERMEDICATION
FROM A MISDIAGNOSIS, AND I
APPROACHED AN ENTITY THAT SAYS
THAT THEY HELP PARENTS WITH
DISABILITIES, BUT MY EXPRESSION
OF BEING OVERWHELM WAS SO
DRAMATIC THAT EVERY AGENCY I
APPROACHED FOR SUPPORT TURNED ME
DOWN.
AND I WOULD ARGUE THAT THAT IS
THE PARENT WHO MOST NEEDS THESE
KINDS OF WRAP-AROUND SERVICES.
AND WHILE MANY PARENTS INCLUDING
THESE HIGH NEEDS PARENTS CAN
BENEFIT FROM A TRAINING PROGRAM
LIKE JULIE'S, TO KNOW THEIR
RIGHTS AND THEIR PRIVILEGES,
THAT DOESN'T NECESSARILY ALWAYS
EQUATE TO THEM BEING ABLE TO
ATTEND A MEETING WHERE THERE'S A
POWER DYNAMIC IN PLAY.
I HAD AS A SOCIAL WORKER, I
COACHED MY PARENTS, I GOT THEM
READY, I SENT THEM TO THE MING,
TMEETING, THEY SIGNED AWAY THEIR
RIGHTS BECAUSE THEY WERE SO
OVERWHELMED WITH BEING TOLD THEY
HAD TO DO SOMETHING.
SO I JUST HOPE AS WE'RE CREATING
ALL OF THESE OPTIONS, THAT WE DO
RECOGNIZE THAT MAYBE 10% OF THE
PARENTS ARE GOING TO HAVE
SUSTAINED NEEDS, NOT A ONE-TIME
PROBLEM SOLVING ISSUE.
I ALSO WANTED TO CONVEY THAT
WHILE I BELIEVE IN SUPPORTED
DECISION-MAKING, MY PUBLIC HIGH
SCHOOL HAD CHILDREN TURNING 18
SIGN AWAY THEIR IEPs IF THEY
WEREN'T UNDER A GUARDIANSHIP.
AND TO DUE PROCESS THAT AT AGE
18 WOULD HAVE CONSUMED THE
BALANCE OF THE CHILD'S
EDUCATIONAL EXPERIENCE.
IT WOULD JUST NOT HAVE WORKED.
AND IN A PRIOR SCHOOL SETTING,
MY SON WAS PUSHED OFF OF
DIPLOMA-SEEKING TRACK IN A
UNILATERAL DECISION BUT AGAIN,
HE WAS ALREADY 18, AND I KNEW
THAT IF I DUE PROCESSED IT, HE
WOULD STILL NOT BE ABLE TO
GRADUATE.
AND HE WASN'T A HIGH BEHAVIORAL
NEEDS STUDENT, HE WAS A HIGH
ACADEMIC NEEDS STUDENT AND THEY
DIDN'T WANT TO ASSIGN A
ONE-ON-ONE STAFF MEMBER TO AN
INDIVIDUAL WHO JUST NEEDED HELP
WITH LEARNING DISABILITIES,
WHICH WAS WHAT THE GLOBAL
PROBLEM WAS.
SO I JUST WANT TO GIVE THOSE AS
CAUTIONARY TALES, WHERE THERE
CAN BE CIRCUMSTANCES WHERE
PARENTS NEED MORE THAN JUST THE
SUPPORT OF A CLASS, WHICH IS
VERY GOOD AT HELPING US KNOW OUR
RIGHTS BUT MAY NOT BE
TRANSLATABLE, THEY MAY NEED A
SHADOWED PERSON, SOMEONE WITH
THEM TO OPEN THOSE THINGS UP.
AND THEN SECOND TO THAT, WE NEED
TO BE ABLE TO GET PARENTS'
RIGHTS BACK MORE QUICKLY THAN
THE PROTOCOL OF THE DUE PROCESS
WHEN A SCHOOL IS CLEARLY TAKING
ADVANTAGE OF A VULNERABLE PARENT
OR VULNERABLE STUDENT.
SO I JUST WANTED TO SHARE THAT.
THANK YOU.
>> BRYAN IS ONLINE AS WELL,
SUSAN.
>> GREAT.
GO AHEAD.
>> THANK YOU VERY MUCH FOR THOSE
PRESENTATIONS.
I WANTED TO DIG INTO A LITTLE
BIT ABOUT WHAT WAS SPOKEN ABOUT
EARLIER WITH THE AUGMENTED
SOCIAL SUPPORT NETWORKS.
AND SEE IF MAYBE THE SPEAKER
COULD EXPAND A LITTLE BIT AS TO
WHETHER OR NOT THEY HAD SOME
DIRECT EXPERIENCE WITH OW TO
ESTABLISH AND EXPAND THOSE
SOCIAL SUPPORT NETWORKS OR IF
THERE WAS SOME EXAMPLES THAT WE
COULD LOOK AT AND EVALUATE IN
TERMS OF THAT AS A POLICY
APPROACH.
>> SO WOULD ANY OF OUR SPEAKERS
LIKE TO ADDRESS THAT?
>> I'M NOT SURE IF THE SPEAKER
WHO TALKED ABOUT THAT IS STILL
ONLINE, BUT I'M HAPPY TO SHARE
WHAT I KNOW.
WHICH MAY BE NOT AS MUCH AS HER.
BUT I KNOW -- AND I THINK IT'S
BEEN MENTIONED UNDER INDIVIDUALS
WITH DISABILITIES EDUCATION ACT,
THERE IS THE PARENT TRAINING
INFORMATION CENTERS WHICH IS A
FAMILY TO FAMILY PEER SUPPORT
MODEL THAT ARE FUNDED IN EVERY
STATE AND TERRITORY, AND I DON'T
KNOW IF KRISTI IS STILL ONLINE
AND COULD SPEAK A LITTLE BIT TO
THOSE PARENT AND TRAINING
INFORMATION CENTERS.
UNDER THE MENTAL HEALTH PROGRAM,
THERE ARE FAMILY TO FAMILY
PROGRAMS AS WELL WHICH DO -- I
SEE CHRISTINA IS ON SO MAYBE SHE
CAN SPEAK MORE ABOUT THAT.
BUT I ALSO JUST WANTED TO
MENTION THAT MANY, MANY YEARS
AGO, PROBABLY 15, 16, 17 YEARS
AGO, WE DID FUND FAMILY SUPPORT
360s UNDER THAT SAME IDEA OF
WHAT CHRISTINA WAS TALKING ABOUT
IN TERMS OF HELPING FAMILIES GET
TO FAMILY NAVIGATORS, PEERS THAT
HAVE BEEN THROUGH THAT PEERNS,
TO HELP THEM NAVIGATE THROUGH
ANTISWORD OF WHAT DENA WAS
TALKING ABOUT AS WELL, SORT OF
THAT ONGOING SUPPORT OF PEER TO
PEERS -- OR PEERS THAT CAN
SUPPORT THEIR PEERS IN INFORM
GATING SYSTEMS, DEALING WITH
ISSUES.
I THINK THERE ARE A LOT OF
SUPPORTS OUT THERE LIKE THAT.
IT'S THE CHALLENGES IS FINDING
THOSE.
WE HEAR ABOUT THAT A LOT.
A LOT OF PEOPLE JUST AREN'T
AWARE OF THE RESOURCES THAT ARE
OUT THERE.
BUT I'LL TURN IT OVER TO
CHRISTINA.
>> HI.
CAN YOU -- WOULD YOU MIND
CLARIFYING YOUR QUESTION, JUST
SO -- I JUST WANT TO MAKE SURE I
GO IN THE RIGHT DIRECTION.
I'M A TALKER SO I CAN GO ALL
SORTS OF WAYS.
YOU WERE ASKING ABOUT THE FAMILY
SUPPORT NAVIGATOR PROGRAMS?
OR --
>> WELL, NO, I WAS ACTUALLY
MORE -- I WAS LOOKING FOR AN
EXPANSION OF YOUR COMMENT ABOUT
AUGMENTED SOCIAL SUPPORT
NETWORKS, AND IT WAS --
>> INFORMAL -- AT FIRST I WAS
LIKE IS HE ASKING ABOUT AACs?
YES.
INFORMAL SOCIAL SUPPORT
NETWORKS, I'VE PUBLISHED A
SERIES OF PAPERS ON -- I WAS
REALLY INTERESTED IN SOCIAL
SUPPORT, HOW DOES IT IMPACT
QUALITY OF LIFE, CAREGIVER
BURDEN, THOSE ASPECTS.
GREAT QUESTION.
WHAT WE'RE FINDING IS FORMAL
SOCIAL SUPPORT CAN BE GREAT WHEN
THEY'RE OFFERED, WHEN THEY'RE
AVAILABLE, WHEN THEY'RE
ACCESSIBLE, WHEN PEOPLE CAN
AFFORD THEM, THOSE KIND OF
THINGS, OR WHEN THERE'S A PAYOR
FOR THEM.
BUT THE INFORMAL SOCIAL SUPPORT
NETWORKS CAN BE REALLY HELPFUL
AND A LOT OF MY WORK FOCUSES ON
AGING FAMILY CAREGIVERS.
SO MANY OF THOSE SUPPORT
NETWORKS, PEOPLE HAVE GONE TO
SIBLINGS, THEY'VE GOT -- FAMILY
CAREGIVERS HAVE GONE TO
SIBLINGS, THEY'VE GONE TO
IN-LAWS, THEY'VE GONE TO
NEIGHBORS, OVER DECADES.
AND SO WHAT OFTENTIMES THEY'RE
TALKING ABOUT IS THAT THEY'VE
REALLY MAXED OUT THEIR INFORMAL
SOCIAL SUPPORT NETWORKS.
THOSE NETWORKS, THEY'RE TIRED,
THEY'RE MAYBE NOT UNDERSTANDING
AUTISM IN ADULTHOOD, THOSE KIND
OF THINGS.
BUT ANYTHING THAT WE CAN DO
PERHAPS IN A FORMALIZED MANNER
CAN BE REALLY HELPFUL BECAUSE
THERE'S ONLY -- AND I'D LIKE TO
IMAGINE THIS WORLD THAT WE CAN
JUST TOTALLY REVAMP ALL THE
SERVICES AND I'M HOPING THAT IT
DOES GO THAT WAY.
BUT IF WE CAN REVAMP FORMAL
SOCIAL SUPPORTS SIMULTANEOUS TO
WAYS TO ALLOW INDIVIDUALS TO
ACCESS INFORMAL SOCIAL SUPPORT
NETWORKS, SO THOSE UNPAID
NETWORKS, BECAUSE YOU GUYS CAN'T
SEE ME, I'M PREGNANT WITH MY
THIRD BABY, BUT MY INFORMAL
SOCIAL SUPPORT NETWORKS HAVE
BEEN SUPER HELPFUL, BEING ABLE
TO CALL MY NEIGHBOR DOWN THE
STREET WHEN I NEED SOMEBODY TO
COME OVER FOR FIVE MINUTES SO I
CAN DO X, Y OR Z, OR MY PARENT
BEING ABLE TO HELP ME JUGGLE MY
WORK SCHEDULE AND THESE KIND OF
DIFFERENT WORK TIMES THAT I'M
WORKING, SO IF WE THINK ABOUT
THAT IN THE CONTEXT OF FAMILY
CAREGIVING ACROSS THE LIFESPAN
SO PEOPLE WHO ARE REALLY
ENDURING CAREGIVERS AND THEN WHO
MIGHT BE DOING OTHER FORMALIZED
INFORMAL CAREGIVING AS WELL
WITHIN THEIR HOMES TO A SPOUSE
AND SO FORTH, ANYTHING WE CAN DO
FORMALLY AND PROFESSIONALLY TO
AUGMENT THOSE.
SOME OF THE WORK I'VE DONE VERY
INFORMALLY THROUGH MY WORK IN
THE SCHOOLS IS I WORK CERTAINLY
WITH INDIVIDUALS WITH AUTISM BUT
OTHER POPULATIONS AS WELL AND
WE'RE SEEING A LOT OF EARLY
ONSET SCHIZOPHRENIA, SOMETIMES
WHAT WE WOULD CONSIDER PR PRODRL
SCHIZOPHRENIA AND PEOPLE ARE
LIKE -- I MEAN, THIS IS REALLY
TRAUMATIC, THIS IS REALLY HARD
FOR THESE FAMILIES SO I'M NOT
DRAWING COMMONALITIES TO AUTISM
BUT I'M GIVING THE EXAMPLE OF
CONNECTING PEOPLE WITH MAYBE
CERTAINLY FORMAL NETWORKS AND
CERTAINLY THOSE KIND OF ASPECTS
BUT SOMEBODY ELSE WHO MIGHT BE
ABLE TO UNDERSTAND.
SO A LOT CAN BE DONE EVEN
THROUGH -- I'M SEEING A LOT DONE
THROUGH FACEBOOK GROUPS.
LAST YEAR I DEVELOPED A TRAINING
FOR AN ORGANIZATION OUT IN
CALIFORNIA OF FAMILY CAREGIVERS
OF ADULTS WITH AUTISM AND OTHER
NEURODEVELOPMENTAL DISABILITIES
BUT EVEN TALKING ABOUT THESE
ASPECTS IN THERE IN THIS
TRAINING I DEVELOPED.
SO I GUESS IN SOME, LIKE IF I
WERE WORKING AS A SOCIAL WORKER,
I COULD WORK TO KIND OF HELP
PEOPLE AUGMENT WHAT THEY ALREADY
HAVE.
SOME OF THE FUNDING THAT I'VE
RECEIVED FROM MY OWN RESEARCH
HAS BEEN THROUGH MICHIGAN HEALTH
ENDOWMENT FUND HERE IN MICHIGAN,
AND IT'S REALLY INTERESTING AS
WE START TO THINK ABOUT THESE
BROADER NETWORKS AND THIS KIND
OF ECOLOGICAL SYSTEM IF YOU
WILL, WHERE DIFFERENT SUPPORTS
CAN COME FROM.
SO IF I CONTINUE TO CALL YOU AND
SAY, HEY, YOU KNOW, DR. BLOOMER,
I NEED HELP, I NEED HELP, I NEED
HELP, YOU'RE GOING TO PROBABLY
STOP PICKING UP MY CALL AS
FREQUENTLY OR AS
ENTHUSIASTICALLY.
BUT IF I GO TO YOU, AND YOU COME
TO ME, AND THEN THERE'S THIS
WHOLE OTHER NETWORK WHERE WE CAN
ALL KIND OF HELP EACH OTHER OUT
AND THEN WE AUGMENT AND HAVE
FORMAL NETWORKS AS WELL THAT
PEOPLE CAN ACTUALLY NAVIGATE
WITH SOME EASE AND UNDERSTAND,
AND I THINK ONE OF THE HARD
THINGS WITH THOSE FORMAL
NETWORKS, AGAIN, WE EXPECT THE
FAMILIES TO BE EXPERTS.
A LOT OF THE FAMILIES WILL COME
IN AND WHEN I'M CONSULTING ON
CASES NOW, THEY'LL TELL ME
EVERYTHING.
I'M LIKE, OH, MY GOSH, YOU JUST
DID MY WHOLE JOB BECAUSE YOU'VE
SPENT DECADES STUDYING IT.
AND SO ANYTHING WE CAN DO TO
KIND OF TAKE THE ONUS OFF THEM
BOTH IN KIND OF THOSE FORMAL
REALMS AS WELL AS THE INFORMAL
REALMS.
AND SOME OF THE THINGS I'M
ENVIGGING AND THAT I'VE SEEN
THAT'S REALLY HELPFUL IS LIKE
CONNECTING PEOPLE WITH THE RIGHT
SUPPORTS.
LIKE HELPING PEOPLE THINK ABOUT
WHO IS IN YOUR NETWORK.
AND AS WE AGE, WE'RE ALL AGING,
MANY OF US HAVE SOME FORM OF
FAMILY CAREGIVER, OUR NETWORKS
ARE GOING TO CHANGE BECAUSE
PEOPLE WILL NATURALLY HAVE
DIFFERENT CAPACITIES THAN
BANDWIDTHS.
SOME PEOPLE MIGHT HAVE MORE
BECAUSE THEIR KIDS ARE GOING TO
GROW UP AND IT'S EASIER TO CALL.
SO HELPING TO THINK ABOUT -- SO
SOME OF THE REALLY COOL THINGS
I'VE SEEN IS KIND OF LIKE
THINKING ABOUT HELPING FAMILIES
LOOK AT THE ECOLOGICAL CONTEXT
IF YOU WILL.
WHO ARE THESE PLAYERS?
WHERE CAN WE GO TO AS WE START
TO THINK ABOUT CAREGIVING?
I THINK WHAT A LOT OF THE
FAMILIES AND CERTAINLY THE DATA
THAT I'VE RUN IS WHEN WE HAVE
INFORMAL NETWORKS, QUALITY OF
LIFE IS SO MUCH HIGHER.
AND SO LIKE WE'RE GETTING --
FAMILIES ARE SAYING O WE'RE
GETTING WHEN DONE RIGHT, WE'RE
GETTING A LOT FROM THESE FORMAL
NETWORKS BUT WE STILL NEED THESE
OTHER THINGS.
I STILL NEED TO BE ABLE TO RUN
UP TO THE GROCERY STORE FOR 20
MINUTES AND GRAB MY EGGS BUT
WHEN I BRING, RIGHT, MY TWO
YOUNGER CHILDREN AND MY PERHAPS
ADULTS, YOU KNOW, WHOEVER, IT
GETS MORE DIFFICULT.
SO I DON'T KNOW IF THAT ANSWERS
BUT JUST ONE, CONNECTING PEOPLE,
HELPING PEOPLE SEE AND
CONTEXTUALIZE AND VISUALIZE WHO
IS IN THEIR INFORMAL SOCIAL
SUPPORT NETWORK AND THEN REALLY
BEING MINDFUL NOT TO TAX THOSE
INFORMAL SOCIAL SUPPORT NETWORKS
AS WELL.
>> I THINK THAT'S A REALLY GOOD
DISCUSSION, KIND OF OUR SORT OF
MOOMORE FORMAL ON RAMP INTO THEE
KINDS OF THINGS BUT I THOUGHT
DR. MORGAN ALSO HAD SOME
INTERESTING INSIGHT INTO THIS
THROUGH THE SANKOFA EFFORT.
BECAUSE YOU HAVE TO DEVELOP, I
THINK -- AND I'D BE INTERESTED
IN A DISCUSSION ABOUT THIS, SORT
OF CULTURALLY AWARE AND
APPROPRIATE ON RAMPS FOR THOSE
COMMUNITIES.
FOR EXAMPLE, A COMMUNITY THAT
MAY MISTRUST GOVERNMENT, FOR
EXAMPLE, YOU KNOW, HAS A VERY
HARD TIME ENTERING ON TO THAT
ON-RAMP.
SO IT SEEMS LIKE THE INFORMAL
NETWORK MAY BE KEY FOR OFFERING
THEM SUPPORT AND SERVICES.
SO I WAS JUST WONDERING IF MAYBE
THERE WAS A LARGER CONVERSATION
THAT MIGHT GROW OUT OF WHAT YOU
JUST BROUGHT UP THAT I THOUGHT
WAS VERY GOOD.
>> I'D SUGGEST MAYBE WE TAKE
THAT CONVERSATION OFFLINE AS
WE'RE FALLING BEHIND ON OUR
SCHEDULE AND WE WANT TO MOVE
FORWARD.
SO IF IT'S OKAY, SCOTT, I'M
GOING TO JUST CLOSE THE SESSION
HERE SO WE CAN ALL TAKE A BREAK
SHE'S THE GRANDPARENT OF AN
AUTISTIC ADULT.
WE ALSO HAVE MS. YETTA MYRICK,
MEMBER OF OUR COMMITTEE AND
PARENT OF AN AUTISTIC YOUNG MAN
AND AN IACC MEMBER.
FOURTH, WE HAVE MS. LINDSEY
NEBEKER, WHO'S ALSO A MEMBER OF
OUR COMMITTEE, AND SHE'S THE
SIBLING TO AN AUTISTIC ADULT
WITH HIGH SUPPORT NEEDS AND ALSO
A MEMBER OF THE COMMITTEE.
AND FINALLY, WE HAVE MS. NANCY
RICHEY, AND SHE'S THE MOTHER OF
AN AUTISTIC ADULT AND A MEMBER
OF THE RAISE FAMILY CAREGIVING
ADVISORY COUNCIL THAT WE HEARD
ABOUT EARLIER TODAY.
SO I LOOK FORWARD TO HAVING THIS
CONVERSATION WITH ALL OF YOU.
I MAY SKIP A QUESTION IF WE ARE
GETTING SHORT ON TIME.
I'LL TRY TO KEEP US MOVING ALONG
BUT I WILL START WITH MY FIRST
QUESTION AND I'LL JUST DIRECT TO
EACH ONE OF YOU.
AND MAYBE I'LL JUST GO IN THE
ORDER THAT I CAN SEE HERE AND IS
MS. MCLEMORE ONLINE?
THERE YOU ARE.
WELCOME.
SO PLEASE CAN EACH OF YOU PLEASE
BRIEFLY INTRODUCE YOURSELF AND
TELL US ABOUT YOUR JOURNEY AS A
CAREGIVER?
SO WE'LL START WITH LINDSEY.
>> CAN EVERYONE HERE?
HEAR?
OKAY.
HI, EVERYONE.
SO I AM LINDSEY NEBEKER.
I AM AN INDEPENDENT CONSULTANT
FROM THE WASHINGTON, D.C. AREA,
FOCUSING ON CREATIVE SERVICES,
RESEARCH PROJECT COLLABORATION
AND PROVIDING EDUCATIONAL
TRAINING FOR CLINICIANS AND
HEALTHCARE PROFESSIONALS.
MANY OF YOU ALREADY KNOW THAT I
AM AUTISTIC, BUT YOU MIGHT NOT
KNOW THAT I ALSO HAVE AN
AUTISTIC SIBLING.
AND MY ONLY SIBLING.
HIS NAME IS JAMES, AND HE'S A
COUPLE YEARS YOUNGER THAN ME.
WE DO SHARE A FEW SIMILARITIES.
JAMES AND I WERE BOTH BORN IN
JAPAN IN THE EARLY 1980s.
WE EACH RECEIVED OUR INITIAL
DIAGNOSIS OF AUTISM WHEN WE WERE
AROUND AGE 2.
WE BOTH WERE EVALUATED AT UCLA
AND WE WERE BOTH ASSESSED BY DRA
FAIRLY RENOWNED SPECIALIST IN
THE FIELD AT THE TIME.
WE BOTH STARTED BY ATTENDING
SPECIAL EDUCATION CLASSES
INCLUDING A BRIEF ENROLLMENT.
IT'S A SCHOOL SOME OF YOU MAY
RECOGNIZE BECAUSE IT ALSO HAS AN
EXPANDED CAMPUS IN THE BOSTON
AREA.
EVENTUALLY I TRANSITIONED TO AN
INTERNATIONAL ENGLISH SPEAKING
SCHOOL IN A FULLY INCLUSIVE
CLASSROOM, HOWEVER, BECAUSE
THERE WERE NO SCHOOLS IN TOKYO
THAT WERE REALLY TAKING IN
STUDENTS WITH HIGH SUPPORT
NEEDS, MY MOM ALONG WITH A SMALL
GROUP OF PARENTS FORMED A
COMMITTEE TO CREATE A SMALL
NON-PROFIT ENGLISH-SPEAKING
SCHOOL DEDICATED TO CHILDREN AND
ADOLESCENTS WITH DEVELOPMENTAL
DISABILITIES.
OUR FAMILY EVENTUALLY MOVED TO
THE UNITED STATES WHEN HE WAS
ABOUT # # AN 9 AND I WAS WILL A.
THERE ARE ALSO A LOT OF UNIQUE
DIFFERENCES BETWEEN ME AND
JAMES.
MY BROTHER HAS SUBSTANTIAL HIGH
SUPPORT NEEDS AND HE REQUIRES
24/7 CARE.
HE IS NON-SPEAKING AND DOES NOT
USE A COMMUNICATION DEVICE SO WE
PRIMARILY ATTUNE OURSELVES TO
HIS BEHAVIOR, GESTURES AND
VOCALIZATIONS TO HELP US
UNDERSTAND HIS UNIQUE METHODS OF
COMMUNICATING.
HE HAS LIVED IN A
COMMUNITY-BASED RESIDENTIAL
HOUSING PROGRAM SINCE THE AGE OF
16, AND HE WAS ABLE TO CONTINUE
ATTENDING A PUBLIC SCHOOL FOR
STUDENTS WITH DISABILITIES UNTIL
THE AGE OF 22.
A LITTLE WHILE AFTER WE SETTLED
INTO THE U.S., JAMES WAS PLACED
ON A WAITING LIST FOR GOVERNMENT
FUNDING AND WAIVERS.
IT TOOK SEVERAL YEARS BEFORE HE
FINALLY GOT ON THE LIST.
AND ANOTHER VERY DISTINCT
DIFFERENCE, VERY DISTINCT
DIFFERENCE IS THAT HE WAS BORN A
TRUE REDHEAD.
AND I MUST ADMIT THAT I'M
EXTREMELY ENVIOUS OF HIS RED
HAIR.
JAMES TURNED 40 EARLIER THIS
YEAR AND HE CURRENTLY LIVES IN
THE WESTERN U.S. OVER
2,000 MILES AWAY FROM ME.
I'M CONTINUING TO LEARN AN
INVALUABLE LESSON ABOUT YOU
HUMANISTIC NATURE OF CARING FOR
ONE ANOTHER, SOMETHING MANY OF
US INCLUDING MYSELF CAN
SOMETIMES FORGET.
AS AN AUTISTIC INDIVIDUAL, I CAN
DEVELOP A TENDENCY TO BE SELF SN
TERRED, STRIEMS FEELING LIKE THE
WORLD REVOLVES AROUND ME.
GROWING UP WITH DISTINCT
DIFFERENCES HAS MADE ME MORE
OPEN MINDED TO THE DIVERSITY OF
COMMUNITIES, CULTURES AND
BELIEFS IN OUR WORLD.
THROUGH THE INITIAL FOUR YEARS
OF MY LIFE BEING NON-SPEAKING I
HAD DEVELOPED A FULL CONVICTION
THAT THOSE WHO DO NOT SPEAK
UNDERSTAND MORE THAN WE ASSUME.
I OFTEN CONTEMPLATE HOW CAN I
HONESTLY CONVEY REAL LIFE
EXPERIENCES INCLUDING THE IMPACT
ON MY BROTHER WHILE ALSO
PORTRAYING HIM IN A
COMPASSIONATE LIGHT.
BOTH ASPECTS ARE IMPORTANT.
WE HAVE TO ACKNOWLEDGE THE
REALITIES WE FACE, AND THEIR
EFFECTS ON US AND OUR LOVED
ONES, WHILE ENSURING THAT OUR
STORY-TELLING IS RESPECTFUL AND
HUMANIZING OUR LOVED ONES.
THIS EXTENDS TO ANY ISSUE,
WHETHER THAT BE ADDICTION,
FINANCIAL HARDSHIPS,
RELATIONSHIP STRUGGLES, JOB
LOSS, LONELINESS, CHRONIC
ILLNESS, OR NAVIGATING LIFE
TRANSITIONS.
>> THANK YOU, LINDSEY.
AND YETTA.
>> HELLO, EVERYONE.
THANKS FOR GIVING ME A MOMENT TO
SPEAK AND TO BE ON THIS PANEL
TODAY.
I HAVE A HAT RACK OF ROLES.
I'VE GRADUATED FROM HAVING MANY
HATS.
MY MOST IMPORTANT ROLE, OF
COURSE, IS AS THE MOTHER OF A
SOON TO BE 20-YEAR-OLD,
21-YEAR-OLD, HE'S 20 NOW, IN
SEPTEMBER.
I DON'T SAY HIS NAME, BUT I WILL
SAY A OR WILL SAY HE TO DENOTE
WHEN I'M SPEAKING ABOUT HIM.
BUT HE WAS DIAGNOSED WITH
AUTISM, ADHD AND AN INTELLECTUAL
DISABILITY.
MANY OF YOU KNOW THAT I'M
PRESIDENT AND FOUNDER OF AN
ORGANIZATION LOCALLY HERE CALLED
DC AWESOME PARENTS, A 501(C)3
NON-PROFIT ORGANIZATION THAT I
FOUNDED WAY BACK IN 2008.
YOU ALL KNOW I'M A PUBLIC MEMBER
OF IACC.
I'M ALSO THE CDC'S ACT EARLY
AMBASSADOR TO DC AND A COMMUNITY
MEMBER ON THE DC'S DEVELOPMENTAL
DISABILITY COUNCIL.
I'M NOT HERE TO GIVE YOU MY
RESUME, BUT I SHARE THIS WITH
YOU SO THAT YOU CAN UNDERSTAND
THAT WHERE I AM RIGHT NOW IS NOT
WHO I WAS WHEN MY SON WAS
INITIALLY DIAGNOSED.
I HAD NO IDEA WHAT I WAS DOING
IN THE EARLY DAYS.
I DID NOT KNOW WHERE TO START.
MANY OF THE STORIES THAT WE HAVE
HEARD THROUGH PUBLIC COMMENTS,
THROUGH US SHARING IN
CONVERSATION TODAY REALLY IS A
REFLECTION OF WHERE I WAS IN THE
VERY BEGINNING, AND SAD TO SAY
THAT'S WHERE MANY FAMILIES STILL
ARE RIGHT NOW TODAY.
PRIOR TO MY SON'S DIAGNOSIS, HE
WAS DIAGNOSED WITH AN EXPRESSIVE
RECEPTIVE SPEECH DELAY AT 2 1/2
YEARS OLD.
TO GIVE YOU A LITTLE BIT OF
FLAVOR OF HOW WE GOT TO THE
AUTISM DIAGNOSIS, I HAD ENOUGH
SENSE AND I REALLY THINK IT WAS
EITHER DIVINE INTERVENTION OR ME
JUST REALLY BEING INTUITIVE
ABOUT WHAT I NEEDED TO DO
BECAUSE NO ONE WAS GUIDING ME
THROUGH THE PLO SES PROCESS AT S
POINT REALLY WAS ME WATCHING HIM
AND TRYING MY BEST TO BE IN TUNE
WITH HIM TO FIGURE OUT WHAT HIS
NEEDS WERE, AND SO WHEN HE WAS
NOT SPEAKING, I WAS LIKE OKAY,
LET ME FIND SOMEONE THAT CAN
HELP ME WORK WITH HIM.
AND SO I GOT CONNECTED WITH A
SPEECH AND LANGUAGE PATHOLOGIST.
THE CHALLENGE WAS, WE ARE IN
D.C. PROPER, THE SPEECH AND
LANGUAGE PATHOLOGIST WAS OVER
THE LINE IN MONTGOMERY COUNTY,
WHICH IS WHERE WE ARE SITUATED
RIGHT NOW.
SHE DID NOT KNOW HOW TO NAVIGATE
D.C. SERVICES, SO SHE WAS LIKE,
YETTA, WHY DON'T YOU TALK TO A'S
DOCTOR ABOUT AUTISM.
I THINK YOUR SON MIGHT BE
AUTISTIC.
AND I SAID OKAY, SO WE WENT FOR
A WELL CHILD VISIT AND I WAS
SPEAKING TO THE NURSE AND I SAID
HEY, A IS GOING TO SEE A SPEECH
AND LANGUAGE PATHOLOGIST BECAUSE
HIS SPEECH DELAY, AND I AGAIN
HAD GOOD SENSE ENOUGH TO KNOW,
WE GOT A REPORT, SHE DID AN
EVALUATION I TOOK TO THE DOCTOR.
THE NURSE, AS WELL MEANING AS
SHE WAS, SHE SAID TO ME, MOM,
YOU CAN'T JUST LET ANYONE
DIAGNOSE YOUR CHILD, AND THAT
DELAYED ME.
SO FAST FORWARD, AND WE THINK
ABOUT THE WORK I'M DOING AS THE
CDC ACT EARLY AMBASSADOR, THAT
ONE MOMENT CHANGED MY LIFE.
IT DELAYED ME IN GETTING MY SON
DIAGNOSED.
IT WASN'T UNTIL THE CHILD CARE
CENTER THAT HE WAS IN WAS
ACTUALLY CHANGING OVER WHO WAS
RUNNING THE PROGRAM, WHERE THEY
ACTUALLY IDENTIFIED HIM AND GOT
ME LINKEDIN TO AT THAT POINT WAS
CALLED THE CARE CENTER, WHICH
WHO THE HECK KNEW WHAT THE CARE
CENTER WAS?
I NOW KNOW, IT WAS A CENTER OF
ASSESSMENT IN REFERRAL AND
EVALUATION.
BUT WHO KNEW THAT?
THE INFORMATION WAS JUST NOT
READILY AVAILABLE.
SO WE WENT THROUGH THE PROCESS,
GOT HIM EVALUATED, WE GOT
CONNECTED WITH AN AMAZING
PSYCHOLOGIST AT THE CENTER FOR
AUTISM AT CHILDREN'S NATIONAL
HOSPITAL, WHICH IS LOCALLY HERE
AND SHE SAW ME.
SHE UNDERSTOOD, SHE'S A WHITE
WOMAN, I SAY THIS AS AN AFRICAN
AMERICAN WOMAN, I TRULY WAS
BLESSED.
I DON'T NECESSARILY HAVE ALL THE
HORROR STORIES.
THERE WERE SOME, BUT NOT ALL THE
HORROR STORIES THAT I SOMETIMES
HEAR AS IT RELATES TO BLACK AND
AFRICAN AMERICAN FAMILIES AND
I'M TRULY BLESSED.
AND SOMETIMES I THINK THAT IT
HAS TO DO WITH THE FACT THAT I
WAS SITUATED IN THE DISTRICT OF
COLUMBIA.
WHERE THERE ARE A LOT MORE
PEOPLE OF COLOR, IF YOU WILL,
RIGHT, AND SO SHE SAW ME, SHE
SAW ME COME IN WITH THE PECKS,
WE HAVE THE PICTURE EXCHANGE
COMMUNICATION SYSTEM.
SHE SAYS, YETTA, YOU'RE THE ONLY
MOM I SEE COMING IN, YOU'RE
COMING IN TO AN EVALUATION WITH
THIS -- WITH THE PEX SYSTEM AND
YOU'RE LIKE ACTUALLY REALLY
TRYING TO USE IT.
SO OVER TIME, RIGHT, SHE WILL
SAY TO THIS DAY, I WANT TO GIVE
HER A SHOUT OUT, LAURA ANTHONY,
SHE'S NOW AT THE UNIVERSITY OF
COLORADO DOING WORK AND I'VE
DONE WORK WITH HER THROUGH THE
YEARS WHEN SHE WAS HERE LOCALLY.
BUT SHE WAS LIKE, I SEE YOU AND
I WANT TO HELP YOU AND THIS IS
WHAT YOU NEED TO DO, AND I
DID -- I TOOK ALL THE STEPS.
I TOOK TIME TO RESEARCH AND
LEARN AND FIGURE OUT WHAT WORKED
FOR HIM.
MY SON IS AN ARTIST.
I FIGURED THAT OUT EARLIER.
I WAS LIKE OKAY, HOW DO I GET
SOMEONE THAT CAN HELP ME WITH
HIS ART?
BECAUSE I KNEW IN THE BACK OF MY
MIND THAT WHAT HE WAS DOING
RIGHT NOW, HIS LOVE OF ART WILL
MAYBE TRANSLATE TO SOMETHING AS
HE BECAME AN ADULT.
RIGHT?
I READ ABOUT HORSES AND HOW
HORSES, YOU KNOW, HELP CHILDREN
WITH AUTISM.
AND SO WE STARTED GOING TO PONY
RIDES EVERY WEEK, I WAS PAYING
WHATEVER THE COST WAS, WE WOULD
GO AND PAY FOR PONY RIDES.
AND NOW HE IS A FULL-FLEDGED
EQUESTRIAN.
WE GO, WE SHOW UP EVERY WEEK, WE
GO AND HE CAN TACK THAT HORSE
AND TAKE THAT HORSE OUT AND
RIDE.
NOW, THIS IS NOT TO SAY THAT I
HAVE NOT MADE SACRIFICES.
WE LIVE AT HOME WITH MY PARENTS.
WE LIVE IN A MULTIGENERATIONAL
HOME.
AND I'M NOT AT ALL EMBARRASSED
TO SAY THAT.
WE HAVE TO MAKE SACRIFICES AND
DO WHAT WE NEED TO DO.
I WANT TO GIVE A SHOUT OUT TO MY
MOTHER, TO MY FATHER, TO MY
BROTHER, TO MY GRANDMOTHER, GOD
REST HER SOUL, WHO WHEN HE WAS
LITTLE TOOK CARE OF HIM.
SUPPORTED ME.
RIGHT?
AND I'VE RECOGNIZED THERE ARE SO
MANY FAMILIES OUT HERE WHO DO
NOT HAVE THAT SUPPORT.
AND I THINK THAT IS THE REASON
WHY I CAN BE HERE TODAY AND TALK
TO YOU AND SHARE ABOUT MY
EXPERIENCE, AND WE'VE BEEN SO
BLESSED TO TAP INTO A LOT OF
SERVICES.
I WASN'T ALWAYS ABLE TO PAY FOR
ART.
I HAD TO MAKE CHOICES.
WITH CAN I PAY FOR PHYSICAL
THERAPY, CAN WE PAY FOR ART?
OKAY, WE TOOK A BREAK FOR A
NUMBER OF YEARS, RIGHT?
YOU MAKE CHOICES.
BUT FORTUNATELY ENOUGH, I WAS
ABLE TO MAKE THOSE CHOICES
BECAUSE I DECIDED TO STAY AT
HOME AND MY FAMILIES WILL
WILLING TO HAVE ME, LET'S JUST
BE REAL.
BUT WE'RE TRULY BLESSED.
I THINK THAT MY LIFE IS ALL THE
BETTER BECAUSE OF MY SON.
AND I HAVE LEARNED SO MANY
THINGS, AND I'M STILL LEARNING.
AND I THINK THAT'S THE PIECE.
I SAY THIS TO ALL THE FAMILIES
AND INDIVIDUALS, WE JUST HAVE TO
KEEP FIGHTING THE GOOD FIGHT AND
WORKING AND ADVOCATING.
THAT'S WHAT'S GOING TO MAKE THE
DIFFERENCE.
>> THANK YOU, YETTA.
>> HI.
MY NAME IS NANCY RICHEY.
I STARTED SO MANY TIMES LOOK AT
ALL OF YOUR NOTES THIS PAST WEEK
TO WRITE DOWN MY ANSWERS AND
FINALLY I JUST SAID I CAN'T.
I JUST CAN'T WRITE THEM ALL
DOWN.
SO THEY'RE JUST GONNA COME AS
THEY COME OUT OF MY HEAD.
MY SON, WE HAVE ONE CHILD AND
IT'S DAN, AND HE'S 30 YEARS OLD.
AND HE LIVES WITH US.
I CAN GIVE YOU A LITTLE BIT OF
THE -- YOU KNOW, THE BEGINNING
OF THIS JOURNEY STORY AND I
SHARE THIS NOT FOR ANY KIND OF
PITY BUT PRIOR TO HAVING DAN, MY
HUSBAND AND I EXPERIENCED FIVE
PREGNANCY LOSSES.
SO THE ONLY REASON I SAY THAT IS
BECAUSE WHEN THAT HAPPENS, AND
THEN YOU FINALLY HAVE A FULL
TERM DELIVERY, YOU'RE LIKE,
FINALLY YOU KNOW THE LIFE
WE'VE ANTICIPATED IS BEGINNING.
AND SO, AND YET, I SAY THE SAME
THING AS YOU THAT I'M A BETTER
PERSON BECAUSE OF HIM.
MY HUSBAND AND I SAY ALL THE
TIME THAT DAN JUST REALLY TAUGHT
US WHAT MATTERS.
HE REALLY TAUGHT US WHAT'S
IMPORTANT.
AND I AM VERY, VERY BLESSED TO
BE IN A MARRIAGE WITH TRULY MY
BEST FRIEND AND A PART MERAND AN
INCREDIBLE FATHER AND I DON'T
QUITE KNOW HOW A SINGLE MOM OR A
SINGLE DAD COULD DO THIS ON YOUR
OWN.
MY HAT IS OFF TO SOMEONE WHO'S
DOING IT ALONE BECAUSE WE WILL
SEE A SITUATION WITH DAN WHERE,
YOU KNOW HE'S STARTING TO HAVE A
MELT DOWN AND HE'S REALLY MAD AT
ME, USUALLY BECAUSE I'M SUPPOSED
TO KNOW EVERY THOUGHT IN HIS
HEAD, AND TOM WILL JUST SAY, I
GOT THIS.
YOU TAKE A BREAK, YOU GO CO WHAT
YOU NEED TO DO TO RECOVER FROM
THIS.
SO WE'RE VERY, VERY TIGHT LITTLE
FAMILY OF 3.
DAN, LET'S SEE, I WAS THINKING
THAT SOME OF THE MOST DIFFICULT
TIMES WERE IN THE WHOLE SCHOOL
YEARS, YOU KNOW JUST REALLY
HOPING AND PRAYING THAT EACH
SCHOOL YEAR, HIS TEAM, HIS
TEACHERS AND SUPPORT PEOPLE
WOULD BE LIKE PARTNERS WITH US
CAN THERE WERE MANY YEARS WHERE
THAT WASN'T THE CASE, HENCE WE
CHANGED SCHOOL DISTRICTS.
BUT BY THE TIME HE GOT TO HIGH
SCHOOL IT WAS JUST AMAZING, HE
JUST HAD AN INCREDIBLE TEACHER,
AN INCREDIBLE TEAM, AND BEING
THAT HE COULD AT A IN SCHOOL
STILL HE WAS 21, HE HAD THIS
INCREDIBLE GROUP FOR LIKE 5
YEARS.
SO THAT WAS GREAT.
IN TERMS OF WEIGHTING, DAN WAS
DIAGNOSED WHEN HE WAS ABOUT 4
BUT WE HAD ABOUT AN 8 MONTH
WAITING PERIOD WHEN WE KNEW
SOMETHING WAS GOING ON THAT HE
NEEDED TO BE EVALUATED.
HE WAS ON 3 DIFFERENT LISTS FOR
AN EVALUATION AND ALL 3 OF THEM
WERE 8 MONTHS LONG.
SO THAT WAS A VERY LONG AND
DIFFICULT AND SCARY STRETCH.
I THINK SOMETHING THAT WE'VE
ECHOES THROUGH THIS AFTERNOON
JUST LISTENING IS THAT FOR ME,
AND FOR US, THE GREATEST THING
IN THE BEGINNING WAS THE AUTISM
SOCIETY, OUR LOCAL CHAPTER--HI,
KIM--[LAUGHTER]
, OUR LOCAL CHAPTER IN ASA
AROUND HARRISBURG, PENNSYLVANIA.
IT WAS THROUGH THE OTHER PARENTS
THAT I LEARNED WHO CAN GIVE THIS
KID A HAIR CUT, WHO'S THE BEST
DENTIST, WHAT ARE WE GOING TO
DO?
HOW DO I NAVIGATE THIS OR THAT?
SO OTHER PATIENTS WERE THE MOST
AMAZING AFFECT.
I REMEMBER WALKING INTO THE
AUTISM SOCIETY MEETING FOR THE
FIRST TIME AND I WALKED IN AND
HERE ARE ALL THESE PEOPLE KIND
OF LAUGHING AND SMILING AND
HAVING A GOOD TIME.
I REMEMBER THINKING HOW CAN THEY
BE HAPPY, THIS IS SERIOUS AND
THEN IN NO TIME I REALIZED IT
WAS A GROUP OF COMRADES, A GROUP
OF PEOPLE WHO WERE SHARING
EXPERIENCES AND WE REALLY--IT
WAS OKAY TO BE TOGETHER AND
LAUGH AND BE TOGETHER AND REALLY
LET YOUR HAIR DOWN AND RELAX.
SO THAT WAS VERY IMPORTANT.
ONE THINK THIS I JUST WAS
THINKING ABOUT IS EARLY ON AND
IF YOU REMEMBER WHAT WAS GOING
ON IN 1993 WITH AUTISM, YOU KNOW
THERE WAS A LOT OF CONTROVERSY,
WHAT CAUSED THIS?
WHO DO WE NEED TO SEE WHO CAN
FIX THIS?
REMEMBER THAT?
LIKE IT WAS VACCINES?
WHAT WAS IT?
IT'S IN THE AIR?
WHO KNOWS WHAT IT WAS BUT I
SUDDENLY HAD AN AQUAKEN 1 DAY
WHERE I THOUGHT WHAT IF DAN
THINKS HE'S MOT JUST PERFECT THE
WAY HE IS, WHAT IF HE READS THAT
YOU KNOW WE'RE TRYING TO CHANGE
HIM?
WHAT HE IF HER CEIVES THAT YOU
KNOW HE NEEDS TO BE FIXED?
AND SO SUDDENLY AT THAT TURNING
POINT, WE JUST TOOK A DIFFERENT
APPROACH, LIKE WE'RE GOING TO
SUPPORT HIM AND LOVE HIM AND DO
ALL WE CAN, BUT HE IS WHO HE IS.
WHEN HE WAS IN ABOUT THE SECOND
OR THIRD GRADE, THE SCHOOL
PSYCHOLOGIST EVALUATED HIM FOR
INTELLECTUAL DISABILITY SO HE
GOT THAT DIAGNOSE TACKED ON AND
MY ATTITUDE AT THE TIME WAS,
YOU'RE JUST DOING THAT SO YOU
DON'T HAVE TO WORK AS HARD.
NO, HE WAS RIGHT.
HE WAS RIGHT ABOUT THAT
DIAGNOSIS.
BUT JUST THOSE KINDS OF HURDLES
TO GET OVER AND GUEST PAST.
TO COME PRESENT, DAN HAS A JOB,
HE WORKED IN A GROCERY STORE IN
THE PRODUCE DEPARTMENT WITH A
JOB COACH.
I'M VERY GRATEFUL HE HAS A
MEDICAID WAIVER IN PENNSYLVANIA
THAT--AND WE USE THE MODEL
CALLED SELF-DIRECTION.
SO I'M THE COMMON LAW EMPLOYER,
WE CAN HIRE OUR OWN PEOPLE AND
IT IS POSITIVELY A GOD SEND AT
LEAST AT THIS POINT IN LIFE TO
BE ABLE TO DO THAT.
I'LL PASS IT ON TO JOE.
SO JUST A FUNNY LITTLE THING.
WE HAD A PRE-ZOOM OF THE
PANELISTS, WAS IT LAST WEEK I
THINK? AND
JOE STARTED DESCRIBING FAMILY
AND WHERE HE LIVES AND HE SAID,
I LIVE IN HARRISBURG,
PENNSYLVANIA AND I WOULDN'T, SO
DO I!
BUT WE NEVER MET BEFORE.
>> ARE WE BACK?
OKAY.
SO WE CAN PROCEED?
OKAY.
THANK YOU SO MUCH.
AND WE APOLOGIZE TO OUR AUDIENCE
ON VIDEOCAST.
WE WERE HAVING TECHNICAL
DIFFICULTIES, BUT WE'RE JUST
PICKING UP WITH JOE JOYCE AND
HIS COMMENTS.
>> GREAT.
THANK YOU, DR. DANIELS AND
EVERYONE ON THE IACC COMMITTEE.
IT'S A GREAT HONOR TO BE ABLE TO
SPEAK WITH YOU TODAY.
MY WIFE ELISE AND I ARE THE
PARENT OF A YOUNG ADULT, DAVID,
WHO IS PROFOUNDLY IMPACTED BY
AUTISM.
HE IS COMPLETELY NON-VERBAL, AND
HE HAS VERY SEVERE
SELF-INJURIOUS BEHAVIORS.
WE'RE VERY GRATEFUL TO HAVE THE
OPPORTUNITY TO SHARE SOME OF OUR
EXPERIENCES WITH ALL OF YOU
TODAY.
AND IN FACT, SOME OF YOU MAY
REMEMBER MEETING DAVID.
I HAD THE PRIVILEGE OF SPEAKING
ONCE BEFORE IN 2019 AT AN IACC
MEET AND DAVID ACCOMPANIED ME TO
THE MEETING AND GOT THE
OPPORTUNITY TO MEET MANY OF THE
PROFESSIONALS ON THE IACC
COMMITTEE AND I BELIEVE I COULD
BE WRONG BUT I BELIEVE HE WAS
THE VERY FIRST PROFOUNDLY
NON-VERBAL SELF-ADVOCATE TO
SPEAK AT THE IACC MEETING.
ACTUALLY I DID A LOT OF THE
SPEAKING BUT HE -- NON-VERBAL
DOES NOT MEAN QUIET.
SO IT GREAT TO BE BACK AND TO
TALK ABOUT SOME OF THE
CHALLENGES THAT OUR FAMILY HAS
FACED AND AS YOU'VE HEARD FROM
OTHERS, THE SUPPORT SYSTEM FOR
FAMILIES THAT ARE IMPACTED BY
PROFOUND AUTISM, IT'S VERY MUCH
INADEQUATE AND INSUFFICIENT TO
COVER THEIR NEEDS.
DAVID WAS DIAGNOSED AT A VERY
YOUNG AGE WITH AUTISM.
AND SHORTLY THEREAFTER, HE
DEVELOPED THE SEVERE SELF
INJURIOUS BEHAVIORS WHERE AT
THAT TIME, HE ACTUALLY -- OUR
TEAM WOULD KEEP DATA WITH
CLICKERS, AND HE WOULD LITERALLY
HIT HIMSELF 8,000 TIMES A DAY.
IT WAS -- IT WAS SO SEVERE THAT
THEY WOULD ACTUALLY MEASURE IT
BY THE MINUTE.
SO IT WAS VERY MUCH A
HEARTBREAKING EXPERIENCE FOR US
AS PARENTS.
DAVID WOULD NOT SMILE, HE JUST
DIDN'T SEEM TO HAVE JOY IN HIS
LIFE AND IT WAS EXTREMELY
HEARTBREAKING FOR US.
IN ADDITION, EVERY FAMILY'S
JOURNEY IS VERY UNIQUE.
OURS IS VERY UNIQUE, I HAVE TO
SAY, BECAUSE IN ADDITION TO
DAVID, WE ALSO HAVE ANOTHER SON
WHO HAS INTELLECTUAL DISABILITY.
MATT IS 28 YEARS OLD, AND MATT
HAS DOWN SYNDROME.
SO RAISING TWO SPECIAL NEEDS
CHILDREN AT THE SAME TIME THAT
ARE ONLY 2 1/2 YEARS APART WAS
GREATLY CHALLENGING, ESPECIALLY
FOR MY WIFE ELISE, WHO I'LL TALK
ABOUT MORE IN A FEW MOMENTS.
BUT SHE WAS SO DEDICATED TO
RAISING OUR BOYS THAT SHE IS,
YOU KNOW, MY HERO.
DAVID, AS I SAID, WOULD REALLY
BE SEVERELY IMPACTED BY HIS SELF
INJURIOUS BEHAVIORS, AND IT WAS
A VERY CHALLENGING TIME FOR US.
IN ADDITION TO DAVID, WE ALSO
HAVE A NEUROTYPICAL DAUGHTER WHO
NOW HAS TWO BEAUTIFUL DAUGHTERS
OF HER OWN, BUT AS A YOUNG
PERSON, WITNESSING ALL THE TIME
SOMEONE HITTING HIMSELF AND
DOING ALL WE CAN TO KEEP HIM
SAFE WAS JUST VERY DIFFICULT FOR
THE WHOLE FAMILY.
>> THANK YOU.
AND ONLINE, WE HAVE VONTRIL, IF
YOU'D LIKE TO GO AHEAD AND
INTRODUCE YOURSELF.
>> I DON'T THINK SHE CAN UNMUTE.
>> CAN YOU UNMUTE YOURSELF OR
CAN OUR IT --
>> NOW.
>> THERE WE GO.
>> CAN YOU HEAR ME NOW?
>> YES.
>> HI.
HELLO.
MY NAME IS VONTRIL MCLEMORE.
I'M 70 YEARS YOUNG.
I'M AN ADVOCATE FOR MY GRANDSON
TREY.
I'M A NATIVE TEXAN.
I'M ALSO A CAREGIVER TO MY
HUSBAND OF ALMOST 50 YEARS,
ALFONSO.
I AM MOM TO ALEX AND JUNIOR, TWO
NEUROTYPICAL FANTASTIC CHILDREN.
GRANDMOTHER TO TREY, WHO IS
AUTISTIC, AND HAS IDD.
AND TRINITY, MY GRANDDAUGHTER
GAVIN, MY GRANDSON, WHO HAS
DYSLEXIA AND LOS ANGELES TON.
LANGSTON.
TREY WAS VOCAL WHEN HE WAS BORN
AND AROUND 18 MONTH TO TWO
YEARS, SOMETHING HAPPENED AND WE
DON'T KNOW WHAT IT WAS, BUT WE
CONNECTED TO A FEVER THAT HE
CONTRACTED IN HIS VERY YOUNG
TODDLER YEARS.
AND AFTER THAT FEVER, AND HE
RECOVERED, WE NOTICED THAT HE
HAD LOST HIS ABILITY TO SPEAK,
BUT HE COULD COMPREHEND AND
FOLLOW DIRECTIONS, HE COULD TAKE
ORDERS, BUT HE COULD NOT
VERBALIZE TO YOU WHAT YOU WANTED
HIM TO DO.
AND MY DAUGHTER AND I WERE
CONCERNED ABOUT IT.
HIS PARENTS WERE YOUNG, AND THEY
WERE TOLD AND THEY THOUGHT THAT,
YOU KNOW, HE WOULD GROW OUT OF
IT.
BUT MY DAUGHTER AND I WERE NOT
OF THAT OPINION.
SO WE HAD DELVED INTO AUTISM AT
THE TIME, AROUND 2022, 23, TREY
WAS BORN IN 2001 -- 2004, I'M
SORRY.
I'M GETTING TONGUE TIED.
BUT ANYWAY WE WERE NOT OF THAT
OPINION.
SO I HAD A DOCTOR LOOK AT HIM
AND HE WAS DIAGNOSED AT ABOUT
3 YEARS OLD WITH AUTISM AND IDD.
AND YETTA, THAT DOCTOR WAS ALSO
A WHITE DOCTOR.
HE'S NO LONGER WITH US IN THE
NATURAL, BUT DR. MANDALE WAS A
LIFE SAVER IN THAT REGARD.
TREY IS HAPPENED S HANDSOME, KI,
COMPASSIONATE, EMPATHETIC, HE'S
GIVING, HE MAKES A MEAN BED, HE
TAKES TRASH OUT, HE LOADS THE
DISHWASHER, HE HELPS ME CARE FOR
HIS GRANDDAD, SO AS MUCH OF A
BLESSING AS WE'VE BEEN TO HIM,
HE HAS BEEN FOR US.
HE'S HIGH FUNCTIONING.
HE HAS ASPIRATIONS AND DREAMS.
ONE OF THOSE DREAMS IS TO LI LIE
IN ONE OF THE MOST AFFLUENT
AREAS IN OUR NECK OF THE DFW
METROPLEX, WHICH IS DALLAS,
TEXAS.
IT'S CALLED PLANO, TEXAS.
HE AND I DRIVE AROUND EVERY
SUNDAY AFTER CHURCH, AND HE
DAYDREAMS ABOUT LIVING IN A
HOUSE IN THIS VERY AFFLUENT
AREA, A MILLION TO $2 MILLION.
I DON'T HAVE THE HEART TO TELL
THIS YOUNG MAN, HEY, THIS IS NOT
SOMETHING WITHIN OUR -- WITHIN
OUR ECONOMIC STRATA TO FULFILL
RIGHT NOW.
HE WORKS AT FIVE BELOW AND HE'S
BEEN THERE SINCE SEPTEMBER.
HE WAS AWARDED THE EMPLOYEE OF
THE MONTH AFTER ONLY TWO MONTHS.
SORE HE WAS ABLE TO SECURE THIS
JOB WITH THE TEXAS WORKFORCE
COMMISSION.
AND I KNOW I'VE HEARD OUR
REPORTS FROM SOME PEOPLE ABOUT
HOW THE TEXAS WORKFORCE
COMMISSION WAS NOT HELPFUL TO
THEM, TOTALLY THE CONTRARY.
THEY WERE A VERY BIG HELP FOR
US, ALONG WITH QUEST EMPLOYMENT,
THEY WERE THE ONES THAT TOOK
TREY OUT LAST SUMMER ONCE A
WEEK, THREE TO FOUR JOB
PROSPECTS A DAY, AND HE FINALLY
DECIDED THAT FIVE BELOW WAS A
GOOD FIT.
AND AS FATE WOULD HAVE IT, THE
MANAGER FOR FIVE BELOW ALSO HAD
AN YO AUTISTIC SON AND THE MANAR
THERE AND THE LINE PERSON AS
WELL HAD AUTISTIC LOVED ONES.
SO HAD IT NOT BEEN FOR THE TEXAS
WORKFORCE COMMISSION AND QUEST
EMPLOYMENT, WE MAY NOT HAVE EVEN
KNOWN IF ALFONSO -- OR TREY WAS
ABLE TO WORK.
TO HOLD A GAINFUL EMPLOYMENT.
WE'VE BEEN HIS CAREGIVERS SINCE
5/28/22, WHICH COINCIDENTALLY
WAS DATE HE GRADUATED FROM HIGH
SCHOOL.
HE'S BEEN A COMPONENT OF OUR I
LOVE EVER SINCE HE WAS BORN.
ON LONG VACATIONS, HOLIDAYS, AND
THAT SORT OF THING.
BUT NOT BEING A PERMANENT
CAREGIVER TO HIM, THAT WAS --
THERE WAS A TRANSITION.
BEING A BLACK MAN WITH
NEURODIVERSITY, LIVING AT THE
INTERSECTION OF CLASS, RACE AND
CULTURE DYNAMICS, THERE ARE MANY
CONCERNS FOR HIS SAFETY AS HE
NOVEMBER GNAVIGATES THE PRESENT.
NOT ONLY IS POLICE BRUTALITY
UPPERMOST IN OUR MINDS, BUT
VIGILANTE CITIZEN ON CITIZEN
CRIME IS ALWAYS A CONCERN.
DRIVING A VEHICLE PRESENTS
ANOTHER DILEMMA, SINCE WE THINK
THAT TREY IS ABLE TO DRIVE, BUT
AS WE KNOW, DRIVING IS MORE THAN
JUST MAKING CONTACT WITH A PEDAL
AND BRAKE.
IT'S ALSO AS A BLACK PARENT AND
CAREGIVER THE ABILITY TO MAKE IT
HOME SAFELY EVERY NIGHT.
WE FEEL HE'S CAPABLE OF LEARNING
BUT WITH AUTISM AND IDD, WE ARE
EQUALLY CONCERNED HIS REACTION
TIME IS DELAYED, HIS
COMPREHENSION IS DELAYED AND
EVEN UNDER THE BEST OF
CIRCUMSTANCES, WE WOULD HAVE
CONCERNED ABOUT HIS DRIVING.
SO OUR SON WHO WAS TREY'S DAD
WHO'S NEUROTYPICAL HAS HAD
SEVERAL NEGATIVE INTERACTIONS
WITH LAW ENFORCEMENT.
TREY, WITH AUTISM, THE INVISIBLE
CONDITION, AT FIRST GLANCE
APPEARS NEUROTYPICAL BUT HAS
COGNITIVE ISSUES THAT AREN'T
READILY AVAILABLE TO LAW
ENFORCEMENT.
THEY MAY MISCONSTRUE TREY'S
CONDITION AS, QUOTE, FAILURE TO
COMPLY, RUDENESS, OR JUST PLAIN
ARROGANCE, CLOSED QUOTE, AND
THAT'S ANOTHER ISSUE THAT WE ARE
QUITE CONCERNED WITH.
AND ON THE LIGHTER SIDE OF THIS,
MY GRANDSON IS A VERY HANDSOME
YOUNG MAN.
HE LIKES TO DRESS UP, HE LIKES
TO GET HIS HAIR CUT AND ALL THE
LATEST STYLES, AND NOW THE THING
HE WANTS TO DO WITH HIS HAIR IS
SPONG.
HE WANTS HIS HAIR SPONGED SO
THAT HE CAN GET DREAD LOCKS.
THOSE OF WHO YOU ARE OF THE
BLACK CULTURE MAY KNOW SOMETHING
ABOUT THAT, BUT THAT'S SOMETHING
HE'S LOOKING FORWARD TO AND WE
ARE ENCOURAGING HIS CREATIVITY
IN EVERY WAY THAT WE CAN.
AND FINALLY, I'D LIKE TO SAY
THAT A SOCIAL LIFE IS NOT OUT OF
THE REALM OF POSSIBILITY FOR OUR
GRANDSON, BUT HERE AGAIN, THERE
ARE NO RESOURCES AVAILABLE WHERE
HE CAN MEET SOMEONE, AND MY
COUSIN HAS A SON WHO'S VISUALLY
IMPAIRED AND WE HAD THIS
CONVERSATION A COUPLE WEEKS AGO.
SHE SAID, CUZ, MY SON WANTS TO
MEET SOMEBODY, HE WANTS TO DATE
AND SEE IF HE CAN DATE, YOU
KNOW, AND DO ALL THE NORMAL
THINGS.
HE'S ABLE TO DO THAT.
AND I TOLD HER, OKAY, WE'LL WORK
ON THAT.
SO IF ANYBODY KNOWS OF A DATING
SITE THAT A YOUNG MAN CAN GO AND
BE SAFE AND POSSIBLY GET TO MEET
SOMEBODY ONLINE, I WOULD
APPRECIATE THAT.
SO I WANT TO THANK YOU ALL FOR
THIS BRAVE SAFE SPACE, AND FOR
THE EQUITY, DIVERSITY AND
INCLUSION THAT I SEE HERE TODAY.
THANK YOU FOR HAVING ME.
>> THANK YOU SO MUCH.
AND I'M GOING TO SKIP TO OUR
THIRD QUESTION BECAUSE I THINK
WE'VE COVERED SOME OF THE
CHALLENGES IN OUR INTRODUCTORY
QUESTION.
AND I'D LIKE TO ASK EACH OF YOU
TO COMMENT ON WHAT KINDS OF
RESOURCES OR SUPPORTS YOU FEEL
ARE MOST NEEDED FOR CAREGIVERS.
AND THINGS THAT YOU'D
ASPIRATIONALLY LIKE TO SEE
DEVELOPED TO HELP YOU IN YOUR
CAREGIVING ROLES OR YOUR FUTURE
CAREGIVING ROLES.
ARE YOU OKAY TO BE THE FIRST,
LINDSEY?
>> I'M FINE.
BUT I'M WONDERING IF I CAN
ACTUALLY SKIP THREE AND DO TWO
INSTEAD.
>> SURE.
GO AHEAD.
SO THE SECOND QUESTION WAS ABOUT
CHALLENGES YOU'VE EXPERIENCED AS
YOU CARED FOR YOUR LOVED ONES.
SO GO AHEAD.
>> I'LL SHARE THAT INSTEAD OF
THREE AND I'LL LET EVERYONE ELSE
SHARE THREE.
SO AS FAR AS JUST -- I'M GOING
TO JUST MENTION A FEW UNIQUE
CHALLENGES.
SO I'VE MET THOUSANDS OF PEOPLE
IN THE AUTISM COMMUNITY BOTH
PERSONALLY AND PROFESSIONALLY.
I'VE ENCOUNTERED FAMILIES WITH
MULTIPLE AUTISTIC CHILDREN,
SICIALG PAISIBLING PAIRS AND NEL
SIBLINGS OF PEOPLE WITH HIGH
SUPPORT NEEDS HOWEVER I DON'T
RECALL MEETING ANYONE WITH A
FAMILY STORY QUITE LIKE MINE,
WHERE TWO SIBLINGS HAVE THE SAME
DIAGNOSIS BUT VERY DIFFERENT
PRESENTATIONS.
IT'S A UNIQUE POSITION FOR ME TO
BE IN.
IT'S ALSO AT TIMES A LONELY
POSITION.
I OFTEN FEEL LIKE I'M NOT FULLY
ACCEPTED DUE TO MY UNIQUE
DUALITY OF ROLES AND DEEP
PERSONAL EXPERIENCE WITH VARIOUS
ASPECTS OF AUTISM.
AND I FEEL AN INTENSE PRESSURE
TO MAKE SURE I AM NOT SAYING THE
INCORRECT WORDS OR PHRASES AND
THAT IS DIFFICULT BECAUSE WHAT
IS DEFINED AS CORRECT OR
INCORRECT IS SUBJECTIVE.
ENSURING MY BROTHER'S SAFETY IS
ONE OF MY TOP CONCERNS AND
PRIORITIES.
NON-SPEAKING INDIVIDUALS WHO USE
UNTRANSLATABLE COMMUNICATION
METHODS ARE PARTICULARLY
VULNERABLE, EVEN IN HIGH QUALITY
RESIDENTIAL PLACEMENTS,
INCIDENTS CAN SLIP THROUGH THE
CRACKS.
A FEW YEARS AGO, JAMES WAS
SEXUALLY ASSAULTED BY A --
[LOST AUDIO]
-- NO IDEA.
THE DETAILED NOTES IN HIS DAILY
REPORT SHOWED NO INDICATION OF
ANY UNUSUAL BEHAVIOR DURING THE
TIME IN QUESTION.
THERE WAS NO EVIDENCE.
AND THIS LEADS INTO ONE MORE
SIGNIFICANT CHALLENGE THAT I
WOULD LIKE TO SHARE.
I HAVE AN OLD FAMILY VIDEO OF MY
BROTHER'S FIRST BIRTHDAY.
WHICH I RARELY WATCH BECAUSE
IT'S TOO EMOTIONAL.
ONE DAY, I RE-WATCHED IT, AND I
CANNOT HELP BUT WEEP
INCESSANTLY.
SEEING THAT PRECIOUS RED HAIRED
LITTLE BOY LAUGHING AND SMILING,
SITTING IN HIS HIGHCHAIR WHILE
BEING PRESENTED WITH A SMALL
BIRTHDAY CAKE, AS TEARS HAD
ROLLED DOWN MY FACE, I SPOKE OUT
LOUD IN FRONT OF THE TV SCREEN
AND I SAID, I'M SO SORRY, JAMES,
THAT WE HAD TO GIVE YOU UP.
I'M SO SORRY THAT I HAVE NOT
BEEN ABLE TO BE THERE FOR YOU.
WHEN A FAMILY MEMBER LEAVES FOR
RESIDENTIAL CARE, THAT GUILT
LINGERS INDEFINITELY.
AS A SIBLING, YOU NEVER WANT TO
FEEL LIKE YOU'RE ABANDONING YOUR
BROTHER OR SISTER.
I WISH I HAD THAT CAPABILITY AND
RESOURCES TO TAKE CARE OF MY
BROTHER ON MY OWN, BUT I SIMPLY
DO NOT.
OUR RESOURCES AND ABILITY TO
CARE FOR HIM DWINDLED AS HE GREW
STRONGER AND HIS MELTDOWNS AND
SELF INJURIOUS EPISODES BECAME
MORE UNPREDICTABLE.
I STILL WONDER HOW AND WHY OUR
PATHS ENDED UP IN DIFFERENT
PLACES, EVEN WHEN WE STARTED ON
THE SAME PATH.
WE SHARED THE SAME DIAGNOSIS,
PARTICIPATED IN THE SAME EARLY
INTERVENTION PROGRAMS AND
BRIEFLY ATTENDED THE SAME
SPECIAL EDUCATION CLASSES.
I HAD ACCEPTED THAT I PROBABLY
WILL NOT FIND AN ANSWER TO THAT
CURIOSITY, AND THAT'S OKAY,
BECAUSE MY FOCUS NOW HAS TO BE
ON HIS FUTURE.
I HAVE TO KEEP REMINDING MYSELF
THAT I DID MY BEST.
AND THAT ACCEPTING OUTSIDE
SUPPORT IS OKAY.
JAMES' QUALITY OF LIFE IS BETTER
NOW WITH THE SUPPORT HE HAS.
AND MY PARENTS' DECISIONS WERE
MADE OUT OF LOVE AND A DESIRE
FOR HIS HAPPINESS.
NOW I'M REFLECTING ON MY NEXT
STEPS TO BEST SUPPORT MY BROTHER
AFTER MY PARENTS PASS, ENSURING
THAT HE'S PROTECTED FROM
EXPLOITATION WHILE HONORING HIS
AUTONOMY.
>> THANK YOU.
>> SO IN TERMS OF WHAT SUPPORTS
AND RESOURCES ARE NEEDED, MY SON
IS CURRENTLY IN A NON-PUBLIC AND
HAS BEEN FOR A NUMBER OF YEARS,
FULL DISCLOSURE, BECAUSE THE
LOCAL SCHOOL SYSTEM COULD NOT
SUPPORT HIM, AND I HAVE GONE DUE
PROCESS TWICE TO GET HIM INTO
THESE PLACEMENTS.
HE TRANSITIONED TO A POST HIGH
SCHOOL PROGRAM LAST YEAR, WHICH
WAS REALLY CHALLENGING FOR HIM
BECAUSE HE WAS THE BIG MAN ON
CAMPUS, TO BE PERFECTLY HONEST.
THE RUNNING JOKE IN THE FAMILY
IS THAT MY SON LITERALLY WAS
LIKE THE TEACHER ASSISTANT IN
HIS AUTISM PROGRAM.
LIKE THAT'S HOW WELL HE WAS
DOING WITH THE SUPPORTS THAT HE
HAD IN HIS AUTISM PROGRAM.
AFTER THE PANDEMIC, I KNEW THAT
IT WOULD BE BEST FOR HIM TO BE
IN THE POST HIGH SCHOOL PROGRAM
AT HIS SCHOOL BECAUSE I KNOW
ABOUT THE CLIFF THAT HAPPENS
WHEN YOU TURN 21, 22, RIGHT?
AND I HAVE REAL CONCERNS ABOUT
THAT.
AND SO HE TRANSITIONED AND MY
SON FOR THE MOST PART IS CHILL
BUT I KNOW HE WAS UPSET BECAUSE
HE WOULD COME HOME AND HE WOULD
SAY, POST HIGH SCHOOL IS
DIFFERENT.
HE WILL KNOCK ON THE WALL,
LITERALLY, IT'S LITERALLY A
KNOCK, OR HE WILL STOMP ON FOOT.
AND THAT'S HIS PROTEST.
LIKE I HAVE RECOGNIZED THERE ARE
AN ARRAY OF BEHAVIORS ACROSS THE
SPECTRUM THAT ARE HAPPENING SO
AGAIN, TRULY BLESSED THAT IT WAS
NOT WORSE.
BUT YOU KNOW, WE'RE LOOKING NOW
AT, OKAY, IS HE BECOMING MORE
ANXIOUS ABOUT THIS PROGRAM, HE
JUST STARTED SCHOOL AGAIN ON
MONDAY, AND HE SEEMS TO BE
SETTLED IN BECAUSE HE IS A
ROUTINE GUY.
HE LIKES HIS ROUTINE.
AND SO HE HAS TO DRESS FOR
SUCCESS AND WEAR, YOU KNOW, THE
CLOTHES THAT HE NEEDS TO WEAR
AND HE KNOWS WHAT DAY THAT HE IS
WEARING WHICH OUTFIT TO SCHOOL,
WHICH IS GREAT, AND WE'VE REALLY
COME A LONG WAY.
BUT WE HAD TO BE IN A PLACEMENT
THAT'S OUTSIDE OF THE SCHOOL
SYSTEM, AND SO WHEN WE THINK
ABOUT THE CHALLENGE AND WHAT IS
NEEDED, WE NEED SCHOOL SYSTEMS
THAT HAVE STAFF THAT ARE
APPROPRIATELY TRAINED TO SUPPORT
THIS WHOLE SPECTRUM.
I'VE RECOGNIZED THAT
SOMETIMES -- I DON'T WANT TO SAY
THERE'S NO CHOICE BUT THE CHOICE
IS IF I WANT MY CHILD TO THRIVE,
I NEED TO FIGHT FOR X, Y, Z,
RIGHT?
IT ALL INDIVIDUALIZED.
BUT I THINK ABOUT THE PARENTS
WHO MIGHT NOT HAVE THE RESOURCES
TO EVEN ADVOCATE TO GET AN
ATTORNEY, TO FIGHT, RIGHT, TO
GET THEIR CHILD AN APPROPRIATE
PLACEMENT, THAT'S ONE THING.
ANOTHER THING THAT HAS COME UP
AND THINKING ABOUT THE WORK THAT
I'M DOING AND SPEAKING TO
PARENTS IS HAVING AN AUTISM 101.
WHAT IS AUTISM?
HOW DOES THIS LOOK FOR MY CHILD?
WHAT IS GENERAL INFORMATION
ABOUT AUTISM THAT FAMILIES CAN
GET WHEN THEIR CHILD IS FIRST
DIAGNOSED BECAUSE FAMILIES
BASICALLY GET THE REPORT, ONCE
THEY GET IN FOR AN EVALUATION,
IF IT'S NOT TWO YEARS LIKE -- IT
WAS EIGHT MONTHS THEN.
WE'RE TALKING TWO, 2 1/2 YEARS
NOW, RIGHT?
AND SO YOU KNOW, AND THIS IS ALL
ACROSS THE COUNTRY.
SO PROGRAMS LIKE ECHO WHICH I'VE
TALKED ABOUT ARE ALL THE MORE
PARAMOUNT IN MAKING SURE THAT
COMMUNITY PROVIDERS ARE ABLE TO
HELP TO MITIGATE THAT AND GET
THESE KIDS DIAGNOSED.
BUT ACCESS TO SERVICES,
RESOURCES WHERE PEOPLE ARE NOT
GOING BROKE, THAT IS A REAL
THING.
ALSO AGAIN GETTING BACK TO THIS
TRANSITION TO ADULTHOOD, MAKING
SURE THAT WE ARE NOT FALLING OFF
A CLIFF, THAT OUR CHILDREN ARE
NOT FALLING OFF A CLIFF WHEN
THEY BECOME ADULT.
AND WE HAVE A CLEAR
UNDERSTANDING OF WHAT THESE
SYSTEMS LOOK LIKE.
SO I'M REALLY EXCITED, JULIE,
ABOUT WHAT YOU'RE BUILDING, YOU
KNOW, VANDERBILT, I HAVE DONE A
PRESENTATION ON TRANSITION TO
SUPPORT FAMILIES LOCALLY IN D.C.
, AND TO BE HONEST, PROVIDERS
WHO LISTEN TO A PRESENTATION
LIKE, YETTA, I HAVE NOT HEARD
THIS ROBUST A PRESENTATION.
AND I USE -- LIFE COURSE, SO
THAT WAS NOTED.
SO THERE ARE THINGS OUT HERE IN
THE LARGER COMMUNITY AND WE'VE
TALKED ABOUT HOW DO WE CREATE
SOME REPOSITORY OF INFORMATION
SO THAT EVERYONE CAN ACCESS, AND
WE'RE NOT RE-CREATING THE WHEEL.
RIGHT?
YOU'VE GOT TO START FROM
SOMEWHERE.
EVERYBODY CANNOT BE STARTING
FROM SCRATCH.
YES, WE NEED TO MAKE SURE IT'S
CULTURALLY COMPETENT, AND IT'S
REFLECTIVE OF THE COMMUNITY THAT
WE'RE SERVING.
BUT WE STILL CANNOT BE STARTING
OVER AND OVER AGAIN.
AND WOVE GOT TO FIX THIS,
BECAUSE PEOPLE ARE FALLING
THROUGH THE CRACKS.
>> THANK YOU.
NANCY?
>> SO I'VE HEARD THE WORE
FALLING OFF THE CLIFF USED A LOT
IN TERMS OF GRADUATING FROM HIGH
SCHOOL AND INTO ADULTHOOD, AND
THEN THERE'S ANOTHER CLIFF, AND
THAT'S WHEN THE PARENTS AGE AND
HAVE TO DECIDE WHAT'S NEXT, AND
WHO, AND WHERE.
VONTRIL, I'M IN THE 70-YEAR-OLD
CLUB WITH YOU.
OKAY?
SO AS THAT HAPPENS, I MEAN, WE
LOVE DAN LIVING WITH US, BUT WE
REALIZE -- WE'RE REALIZING NOW,
WE'VE GOT TO GET SOME ADVANCED
PLANS, WE'VE GOT TO GET SOME
THINGS IN PLACE, AND TRULY, IT
IS LIKE A CLIFF.
I LOOK OVER THE EDGE AND GO,
OOO, NOT TODAY.
AND I BACK UP.
THEN I BACK UP.
SO THAT KIND OF GUIDANCE WOULD
BE IMMENSELY HELPFUL IN TERMS OF
A VERY SPECIFIC AND INTENTIONAL
RESOURCE AND SUPPORT.
I CANNOT EMPHASIZE ENOUGH IT WAS
OTHER FAMILIES WHO WERE OUR
TEACHERS, OUR VERY BEST
TEACHERS.
SO AS MANY OPPORTUNITIES AS
THERE CAN BE FOR FAMILIES TO
CONNECT WITH EACH OTHER -- I
HAVE YOUNG PARENTS CONTACTING ME
SAYING, HELP, YOU KNOW, WHAT DO
WE DO, AND IT'S VERY GRATIFYING
TO WALK THROUGH, YOU KNOW, OKAY,
HERE'S WHAT -- HERE'S WHERE YOU
ARE AND WHAT YOU NEED TO BE
THINKING ABOUT NOW, BUT YOU'VE
GOT THIS.
YOU'RE THE EXPERT ON YOUR OWN
CHILD.
YOU'RE STILL THE EXPERT.
ON THIS
LITTLE GUY.
THE OTHER THING I WAS THINKING
ABOUT IN TERMS OF SERVICES AND
SUPPORTS THAT ARE MISSING OR
THAT COULD BE HELPFUL FOR
CAREGIVERS, I DIDN'T MENTION
THIS BEFORE BUT I WAS ALSO THE
PRIMARY CAREGIVER FOR MY PARENTS
AND MY HUSBAND'S MOTHER WHO
LIVED WITH US FOR 13 YEARS.
SO THAT KIND OF
MULTIGENERATIONAL SITUATION AS
MY MOTHER-IN-LAW IN PARTICULAR'S
HEALTH FAILED, SOME KIND OF A
BRIDGE SUPPORT, YOU KNOW, WHERE
THEY COULD HAVE BOTH HAD SUPPORT
AT THE SAME TIME, FOR EXAMPLE.
YOU KNOW, SO SOMETHING ALONG
THOSE LINES, BUT WHEN YOU'RE
JUGGLING MULTIPLE CARE GIVING
ROLES LIKE THAT, THAT'S A TIME
WHEN EXTRA SUPPORT WOULD BE MOST
HELPFUL.
>> AND JOE?
>> THANK YOU.
I THINK THE CHALLENGES THAT
FAMILY CAREGIVERS FACE AND THE
SUPPORT AND RESOURCES ARE VERY
MUCH INTERTWINED.
AS WAS SAID EARLIER, MANY FAMILY
CAREGIVERS ARE ALSO SINGLE
PARENTS, AND AS NANCY SAID, IT'S
JUST MIND BOGGLING TO THINK HOW
SOMEONE COULD HANDLE THAT AS A
SINGLE PARENT.
BUT EVEN FOR COUPLES, MOST
COUPLES THAT ARE ACTING IN THE
FORM OF FAMILY CAREGIVERS, IT'S
A ONE-INCOME FAMILY.
YOU KNOW, AND THAT'S WHAT WE
FACED IN OUR HOUSEHOLD.
ELISE LITERALLY GAVE UP HER
CAREER IN THE ART WORLD TO STAY
HOME AND FOCUS ON THE FAMILY.
SO I BECAME THE SOLE WAGE EARNER
FOR THE FAMILY.
SO THAT PUT STRESS ON ALL OF US.
I FELT LIKE I HAD TO DELIVER.
WHICH MEANT I HAD TO WORK EVEN
HARDER AND TRAVEL EVEN MORE AND
WHEN I WAS OUT ON THE ROAD, I
WAS ALWAYS WORRIED ABOUT WHAT IS
TAKING PLACE AT HOME.
OFTEN WHEN I WOULD COME HOME, I
WOULD SEE THAT ELISE MAY BE
BRUISED FROM BASICALLY TRYING TO
INTERVENE AND KEEP DAVID FROM
HITTING HIMSELF, DAVID WAS
REALLY NOT AGGRESSIVE TOWARDS
OTHERS, BUT WHEN YOU GET IN
BETWEEN TO TRY TO KEEP HIM SAFE,
OFTEN YOU'RE THE RECIPIENT OF
THE BEHAVIORS.
SO THERE'S A LOT OF STRESS ON
FAMILIES TO BE ABLE TO PROVIDE.
ALSO ELISE ALWAYS --
[AUDIO LOST]
THAT WORK, BUT THEY HAVE LIMITED
HOURS.
AND ONE OF THE ISSUES WE FACED
WAS THAT WE COULD NOT LEAVE
DAVID ALONE OVERNIGHT WHILE HE
WAS SLEEPING.
BECAUSE HE WOULD JUST WAKE UP
OUT OF THE BLUE IN THE MIDDLE OF
THE NIGHT AND START HAVING SELF
INJURIOUS BEHAVIORS, AND IF WE
WEREN'T RIGHT THERE TO
INTERVENE, THE ROOM COULD LOOK
LIKE A WAR ZONE -- WAR SCENE
WITH BLOOD AND SO ON.
SO THE SUPPORTS THAT ARE NEEDED
FOR BEHAVIORAL AND TN SUPPORT
STAFF JUST NEED TO BE
CONTINUALLY LOOKED AT AND
IMPROVED.
ANOTHER RESOURCE THAT IS VITAL
IS TRANSPORTATION.
ESPECIALLY WITH A FAMILY LIKE
OURS WHERE MY WIFE WAS CARING
FOR ONE SON WITH DOWN SYNDROME,
ONE SON WITH AUTISM, AND THE
THERAPEUTIC SUPPORT STAFF ARE
NOT PERMITTED TO DRIVE THEIR
CLIENTS, SO MY WIFE WAS THE
CHAUFFEUR.
AND YOU KNOW, OFTEN THE TWO BOYS
ARE VERY DIFFERENT.
ONE WANTED TO BE IN THE LIBRARY,
AND ONE WANTED TO BE AT THE
PARK.
AND HOW DO YOU ACCOMMODATE BOTH?
SO THERE'S A REAL NEED OUT THERE
FOR TRANSPORTATION SERVICES FOR
THOSE WITH AUTISM AND OTHER
DISABILITIES.
FAINLLFINALLY OTHER RESOURCES TE
NEEDED, ACCESS TO SERVICES.
THERE'S A VERY SEVERE SHORE STAJ
AS YOU ALL KNOW OF QUALIFIED
PROFESSIONALS WHO REALLY
UNDERSTAND THE UNIQUE NEEDS OF
THOSE WITH PROFOUND AUTISM AND
ALL AUTISTIC INDIVIDUALS.
SO ACCESS TO THE SERVICE -- TO
THE QUALIFIED PROFESSIONALS IS
EXTREMELY LIMITED.
MY WIFE REALLY WORKED AS AN
UNPAID CARE PROFESSIONAL BECAUSE
SO OFTEN THERE WAS NOT THE
AGENCY THAT PROVIDED OUR TSS
SERVICE WAS UNDERSTAFFED AND
THEY WOULD RELY ON US AS PARENTS
TO PROVIDE THE SERVICES.
SO -- AND FINALLY, RESPITE CARE.
FAMILY CAREGIVERS NEED A BREAK.
THEY NEED THE OPPORTUNITY TO GET
AWAY FOR A DAY OR TWO AND TO
AVOID BURNOUT, AND THE RESPITE
SERVICES, EVEN IF THEY ARE
AVAILABLE, ARE VERY LIMITED.
THERE'S LIMITS ON HOW MANY
NIGHTS PER YEAR YOU CAN USE SO
YOU REALLY HAVE TO PLAP IT WELLL
IN ADVANCE SO I THINK RESPITE
SERVICES IS ANOTHER RESOURCE AND
AREA OF SUPPORT THAT IS SORLIE
NEEDED.
>> THANK YOU.
AND VONTRIL.
>> OKAY, WHERE DO I START?
ALL RIGHTY.
THE CHALLENGES.
I HEARD ONE OF THE SPEAKERS
EARLIER SPEAK OF BOUTIQUE
SHOPPING.
THAT'S WHAT I FELT LIKE WHEN
TREY MOVED IN WITH US.
THERE WAS A LITTLE BIT OF THIS,
LITTLE BIT OF THAT, THERE WAS NO
COMPREHENSIVE DATABASE OR
GATHERING OF INFORMATION THAT
WOULD SHOW ME WHAT I NEEDED.
SO WE HAD NO TEMPLATE AND EVEN
THOUGH TREY HAD BEEN IN OUR
LIVES AS A CHILD GROWING UP,
IT'S TOTALLY DIFFERENT.
THE SUPPORTS HE NEEDS AND THE
SUPPORTS THAT WE NEEDED WERE
DRASTICALLY CHANGED.
FOR INSTANCE, THE CHALLENGES OF
HEALTHCARE NOW.
WE NEEDED TO FIND A DOCTOR AND
WHEN HE MOVED IN, HE WAS ON ONE
KIND OF MEDICAID PLAN AND THEN
WHEN HE BECAME 20, THEN WE HAD
TO TRANSITION.
SO WE HAD TO FIND A DENTIST, WE
WERE RESPONSIBLE FOR EMOTIONAL
SUPPORT FOR HIM FOR COUNSELING
BECAUSE IF YOU THINK ABOUT IT,
HAVING LIVED WITH YOUR PARENTS
AND YOUR SIBLINGS, ALL OF YOUR
LIFE UNTIL YOU WERE 18 1/2 YEARS
OLD HAS GOT TO BE TRAUMATIC AND
DEVASTATING TO MAKE THAT
TRANSITION.
EVEN THOUGH HE DECIDED THAT HE
WANTED TO LIVE HERE WITH US, IT
HAD TO LEAFY MOTI LEAVE EMOTIONO
WE HAD TO FIND THE COUNSELING.
WE HAD TO BE HIS RECREATIONAL
SUPPORT.
AS YETTA WAS SAYING ABOUT HER
SON AND ALL OF THE SKILLS AND
YOU KNOW, IDEAS THAT HE HAS THAT
HE WANTS TO GET INVOLVED IN, HO
HOBBIES, WELL, TREY IS THE SAME
WAY.
LUCKILY, IN 2019, I CONNECTED
WITH SPECIAL OLYMPICS, AND THEY
HAVE PROGRAMS THAT ARE ALMOST
FREE.
I THINK WE PAY ABOUT $12 A YEAR,
AND THEY ONLY REQUIRE YOU TO
RENEW THE PHYSICAL EVERY TWO
YEARS.
SO HE SWIMS, HE BOWLS, HE TOOK
BOXING.
ALL OF THOSE THINGS WERE ON US
BECAUSE AS HUMAN BEINGS, WE ARE
EMOTIONAL BEINGS, WE ARE
PHYSICAL BEINGS AND WE ARE
SPIRITUAL BEINGS.
THE FINANCIAL RESOURCES, WHERE
ARE WE GOING TO GET THESE
RESOURCES TO COVER THESE THINGS,
YOU KNOW, DID HE HAVE THIS
BENEFIT WHEN HE WAS WITH HIS
PARENTS?
HOW DOES THAT TRANSFER TO US,
DOES THAT TRANSFER TO US?
SO HOW DO WE FILL IN THOSE
HOLES?
SO THAT HE WON'T MISS ANY
BENEFITS THAT HE SHOULD HAVE.
MORE COLLABORATIONS, I THINK,
ARE INTEGRAL AND CRITICAL.
ON STATE LEVEL, THE COMMUNITY
LEVEL, THE FEDERAL LEVEL, AND
THE NON-PROFIT LEVEL.
I WISH, AGAIN, THAT THERE WERE
MORE DATABASES, BANKS,
INFORMATION SYSTEMS THAT WERE
INTERSECTIONAL TO ONE ANOTHER SO
THAT WE WOULDN'T ALWAYS BE
OPERATING FROM A DEFICIT, HAVING
TO REINVENT THE WHEEL, WHEN WE
REALLY DIDN'T HAVE TO REINVENT
THE WHEEL, WE JUST WEREN'T AWARE
THE WHEEL WAS ALREADY THERE.
AND ANOTHER THING THAT'S VERY
CONCERNING TO ME AND WHEN I
HEARD THIS YEARS AGO, I JUST
ALMOST BLEW A GASKET, THAT BY
THIRD GRADE, PENAL INSTITUTIONS,
CARCERAL INSTITUTIONS ARE
DECIDING HOW MANY PRISON CELLS
THEY NEED TO CONSTRUCT FOR OUR
YOUNG PEOPLE.
THIRD GRADE.
AND THEY CONTEMPLATE THAT ON
READING SCORES OR LACK THERE.
SO WHERE ARE OUR ADVOCATES IN
SCHOOL, ADVOCATING FOR THESE
KIDS, GETTING THESE KIDS
DIAGNOSED OR SOME WHO ARE
MISDIAGNOSED AS BEING ENCOVE --D
THEY MAY VERY WELL HAVE LEARNING
DIFFERENCES AND LEARNING
DISABILITIES.
SO I WOULD LAKE TO SEE MORE
ENGAGEMENT WITH OUR PUBLIC
SCHOOL SYSTEMS THE SAME WAY THE
PENAL AND CARCERAL SYSTEMS ARE
ENGAGED WITH THE SCHOOL SYSTEM.
PERHAPS IF WE WORKED TOGETHER
HAND IN HAND, WE COULD THWART
AND MAYBE DIMINISH THE NEED FOR
SO MANY PRISON CELLS WHEN MANY
OF THE OCCUPANTS OF THE PRISON
CELLS ARE DISPROPORTIONATELY
MARGINALIZED BROWN AND BLACK
PEOPLE WHO DID NOT HAVE THE
ADVANTAGES THAT SOME OF THE
OTHER CULTURES HAD.
SO THAT'S ALWAYS ONE THAT JUST
MAKES ME CRAZY.
NOW, ON THE POSITIVE SIDE, THE
RESOURCES THAT WE WERE ABLE TO
ACCESS, I GOT THE BOOK HERE.
MISS YETTA, HERE IS YOUR BOOK.
CAN YOU ALL SEE THAT?
I CAME IN TO KNOWLEDGE OF THIS
PHENOMENAL WOMAN AND HER TEAM,
COMMUNITY AUTISM RESEARCH
AMBASSADOR PROGRAM.
FAMILY VOICE.
>> THANKS FOR THE SHOUT OUT,
VONTRIL.
DR. LISA WARE AS WELL.
>> YES, YES, THE WHOLE TEAM.
DR. LISA WARE AND THE OTHERS.
THAT WAS ONE OF MY MAIN
RESOURCES.
I HAVE SO MUCH INFORMATION IN
THIS BOOK.
I REFERRED TO IT TODAY WHEN
MAKING MY PRESENTATION.
AND I FOUND OUT ABOUT FAMILY
VOICES AND YETTA'S ORGANIZATION
THROUGH A TEXAS NON-PROFIT
CALLED TEXAS PARENT TO PARENT.
THEY WERE ABLE TO GIVE ME
DOCUMENTS, LEGAL DOCUMENTS, ABLE
TO ADVISE ME ON THE BEST AVENUES
TO GO IN ORDER TO TAKE CARE OF
MY GRANDSON'S SPECIAL CONDITION.
I WAS SPEAKING TO A FRIEND LAST
NIGHT ON THE PHONE, SHE HAS A
GRANDDAUGHTER.
AND THEY HAVE GUARDIANSHIP, THE
STATE OF TEXAS, THEY WERE
ADVISED THAT THEY NEEDED TO
COMPLETE GUARDIANSHIP PAPERS.
AND THEN AFTER THEY COMPLETED
THE GUARDIANSHIP PAPERS, SHE
SAID WELL THEN THEY HAD TO ADOPT
THE GRANDDAUGHTER.
AND I THOUGHT, OH, MY GOODNESS,
I DON'T KNOW ANYTHING ABOUT
THIS.
BUT WITH THE HELP OF TEXAS
PARENT TO PARENT, WE WERE ABLE
TO DO THE CORRECT LEGAL
INFORMATION AND FORMS THAT WE
NEEDED SO AS NOT TO DO SOMETHING
THAT WOULD FURTHER INCAPACITATE
OR FURTHER DEMEAN OR DELAY HIS
PROGRESSION.
ANOTHER AGENCY WAS THE TEXAS
WORKFORCE COMMISSION.
I'VE ALREADY TOLD YOU ABOUT
THEM.
THEY WERE AN INVALUABLE ASSET.
QUEST EMPLOYMENT, DALLAS, TEXAS,
THAT WAS ANOTHER.
JOB PLACEMENT.
WITHOUT THEM, WE WOULD NOT HAVE
ALFONSO WORKING TODAY, WHICH IS
WHERE HE IS, AND WE HAVE A
RESPITE PERSON THAT TOOK HIM
TODAY FOR ME SO THAT I COULD
PREPARE FOR THIS PRESENTATION
THAT'S SO IMPORTANT TO MY HEART.
SO WE TAKE ADVANTAGE OF THOSE.
LET ME SEE, I'M GOING DOWN MY
LIST.
>> THANK YOU SO MUCH, VONTRIL.
IT'S 5:00 SO WE'RE GOING TO HAVE
TO WRAP UP BUT WE REALLY
APPRECIATE THOSE COMMENTS.
WE APPRECIATE THE COMMENTS OF
ALL OF OUR PANELISTS HERE, AND
YOU ALL FIT A LOT IN TO A COUPLE
OF QUESTIONS.
SO I'LL HAND IT OVER TO SHELLI
AND THEN WE WILL BE WRAPPING UP
SHORTLY.
>> LET ME JUST ECHO SUSAN'S
THANKS.
I REALLY WANT TO THANK E.1 FOR
JOINING AND PARTICIPATING TODAY.
I THINK WE'LL ALL AGREE THIS HAS
BEEN A REALLY FANTASTIC MEETING
AND A REALLY GREAT WAY TO ROUND
OUT THIS PHASE OF THE IACC.
SO CONGRATULATIONS AND THANKS TO
ALL.
SPECIAL THANKS TO OUR SPEAKERS
AND ALL OF YOU FOR SHARING
EITHER YOUR PROGRAMS OR YOUR
RESEARCH EFFORTS OR YOUR
PERSONAL EXPERIENCES.
WE REALLY APPRECIATE THAT.
THANKS SO MUCH TO OUR COMMITTEE
MEMBERS FOR ALWAYS MAKING VERY
ASTUTE COMMENTS, ALL OF WHICH
SERVE TO ENSURE THAT WE CONTINUE
TO GROW AND TO IMPROVE UPON THE
WORK THAT WE DO TOGETHER.
AND FINALLY A VERY SINCERE
THANKS TO SUSAN, ONI AND THE
ENTIRE ONAC AND IACC ORGANIZING
TEAM FOR RUNNING THE MEETING,
ORGANIZING US, GETTING ALL OF
THE REPORTS OUT, AND JUST DOING
A FANTASTIC JOB OVERALL.
IT'S BEEN MY PLEASURE TO LISTEN
TO ALL OF YOU TODAY, SO AGAIN,
THANK YOU SO MUCH.
BACK TO YOU, SUSAN.
>> THANK YOU SO MUCH.
WE REALLY APPRECIATE ALL OF YOU.
THANK YOU TO ALL OF OUR
WONDERFUL COMMITTEE MEMBERS FOR
THREE GREAT YEARS OF FULL
COMMITTEE MEETINGS AND YOU KNOW
THAT YOUR JOB ISN'T COMPLETELY
OVER BECAUSE WE WILL BE IN TOUCH
TO FINISH UP SOME PROJECTS.
THANK YOU AGAIN, AND WE WILL BE
REACHING OUT VIA EMAIL AND
POSTING DIFFERENT UPDATES ON OUR
WEBSITE.
THANK YOU, EVERYONE.