I WANT TO WELCOME MEMBERS OF THE
COORDINATING COMMITTEE TO THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE.
THIS IS AVAILABLE PUBLICLY BY
NIH VIDEOCAST I WANT TO MAKE
SURE TO REMIND ALL OUR MEMBERS
THAT YOU WILL BE SPEAKING LIVE,
VIA THE WEB TO A LARGE AUDIENCE.
WE'RE INTERESTED AND ENGAGED IN
WHAT WE HAVE TO SAY.
I WANT TO WELCOME EVERYONE TO
THIS MEETING WHICH IS TAKING
PLACE AS IS OUR USUAL HABIT
DURING APRIL, AUTISM AWARENESS
MONTH.
DURING THIS MONTH, WE RECOGNIZE
THAT WE NEED TO TAKE TIME TO
REFLECT ON AND INCREASING OUR
UNDERSTANDING OF INCLUSION AND
ACCEPTANCE OF AUTISTIC PEOPLE
AND FAMILIES AND TAKE ON
CHALLENGES FACED BY THE
INDIVIDUALS AND THE FAMILIES AND
COMMUNITIES.
IT IS ALSO A MONTH WHERE WE
CELEBRATE THE STRENGTHS,
ACCOMPLISHMENTS AND
CONTRIBUTIONS OF PEOPLE ON THE
AUTISM SPECTRUM AS WELL AS THEIR
COMMUNITIES ACROSS THE GLOBE.
IN THAT SPIRIT I WANT TO
ACKNOWLEDGE HAPPY UPDATES ABOUT
OUR COMMITTEE MEMBERS AND HOPE
TO MAKE IT A TRADITION TO
RECOGNIZE ACCOMPLISHMENTS OF
IACC MEMBERS.
IF ANY HAVE SIMILAR ANNOUNCEMENT
TO SHARE AT FUTURE MEETINGS LET
SUSAN AND THE IACC STAFF AND SAM
CRANE WHO WAS THE LONG-TIME
DIRECTOR OF THE AUTISTIC NETWORK
IS NOW AT THE COFFEE TRUST WITH
THE INDIVIDUALS WITH DISABILITY
IN WASHINGTON, D.C.,
CONGRATULATIONS, SAM, IN YOUR
NEW POSITION.
I'M PLEASED TO CONGRATULATE HARI
A SENIOR AT CALIFORNIA BERKELEY.
HE WAS RECENTLY ACCEPTED TO THE
VANDERBILT UNIVERSITY Ph.D.
PROGRAM IN NEUROSCIENCE AND
HAVING JUST VISITED LAST WEEK
AND RECEIVED HARI'S E-MAIL
SAYING HE WAS ACCEPTED WHILE I
WAS THERE I WAS ABLE TO CONVEY
TO THEM THE VANDERBILT TO HEAR
FROM THEM AND THE ENTHUSIASM AND
HAS ALSO BEEN ACCEPTED AT THE
PAUL AND DAISY GRADUATE GRADUATE
PROGRAM FOR IMMIGRANTS.
RECIPIENTS ARE CHOSEN FROM A
POOL OF 1800 APPLICANTS.
CONGRATULATIONS, HARI.
AND AGAIN WE HOPE TO MAKE IT A
TRADITION AT FUTURE MEETINGS.
TO GET ON TO THE MEAT OF THE
MEETING TODAY WE HAVE A LOT OF
THINGS TO LOOK FORWARD TO AND A
VARIETY OF PRESENTATIONS AND
HEAR UPDATES ABOUT HOUSING
PROGRAMS FROM THE DEPARTMENT OF
HOUSING AND URBAN DEVELOPMENT
AND THE ADMINISTRATION ON
COMMUNITY LIVING AND HEAR
REMARKS FROM DR. TARA SCHWETZ A
MEMBER OF THIS COMMITTEE AND
HEARING ON THE IACC STRATEGIC
PLAN AND THE 2021 SUMMARY OF
ADVANCES.
TOMORROW THE MEETING WILL
CONTINUE AS WE'LL BE HEARING
FROM AND DISCUSSING PUBLIC
COMMENTS AND HEARING
PRESENTATIONS ABOUT THE DIVERSE
COMMUNICATION NEEDS OF
INDIVIDUALS ON THE AUTISM
SPECTRUM.
ONCE AGAIN, I THANK ALL MEMBERS
OF THE COMMITTEE AND PUBLIC FOR
JOINING US TODAY AND I'LL TURN
IT OVER TO SUSAN FOR OPENING
REMARKS AND APPROVAL OF MINUTES
FROM THE JANUARY MEETING.
SUSAN DANIELS.
>> THANK YOU, JOSH.
I WANT TO ECHO JOSH'S WELCOME
AND WELCOME PEOPLE VIEWING IN
OUR LISTENING AUDIENCE AROUND
THE COUNTRY AND AROUND THE WORLD
AND TO OUR COMMITTEE MEMBERS AS
WE MARK AUTISM AWARENESS MONTH.
AGAIN, IT'S A MONTH THAT WE
REAFFIRM OUR COMMITMENT TO
ACCEPTANCE, INCLUSION AND
EMPOWERMENT OF PEOPLE ON THE
AUTISM SPECTRUM AND ADDRESSING
CHALLENGES AND OPPORTUNITIES FOR
INDIVIDUALS AND THEIR FAMILIES.
LATER WE'LL HIGHLIGHT ACTIVITIES
AND I ENCOURAGE YOU TO CHECK OUT
THE WEB PAGE ON THE IACC WEBSITE
FOR MORE INFORMATION ON THESE
AND OTHER ACTIVITIES SPONSORED
BY THE GOVERNMENT AGENCIES AS
WELL AS NONPROFITS AROUND THE
U.S. AND WORLDWIDE.
WE WANT TO REMIND THE COMMITTEE
MEMBERS TO PLEASE KEEP YOUR
MICROPHONES OFF UNLESS SPEAKING
AND KEEP CAMERAS OFF DURING
PRESENTATIONS AND BREAKS.
YOU'RE WELCOME TO TURN THEM ON
DURING COMMITTEE DISCUSSIONS AND
IF YOU'D LIKE TO CONTRIBUTE A
WRITTEN COMMENT DURING
DISCUSSION PERIODS RAISE YOUR
HAND USING THE ZOOM RAISED HAND
FUNCTION AND LET US KNOW YOU'D
LIKE TO COMMENT AND THEN USE THE
CHAT FEATURE TO SEND THE TEXT OF
YOUR COMMENT TO SEND COMMENTS
HERE WE THOUGHT WOULD BE EASY
FOR EVERYONE AND WHEN IT'S YOUR
TURN TO BE RECOGNIZED THE OAC
STAFF MEMBER WILL READ YOUR
COMMENTS ON ZOOM.
FOR THIS MEETING, MR. STEVEN
ISAACSON A MEMBER OF THE TEAM
WILL READ MEMBER COMMENTS SENT
THROUGH CHAT IN THE MEETING.
NOW I'D LIKE TO CONTINUE WITH
THE APPROVAL OF THE MINUTES FROM
THE JANUARY MEETING.
I'D LIKE TO TAKE A MOMENT TO IS
COMMITTEE MEMBERS IF YOU HAVE
COMMENTS ON THE DRAFT MEETING
THAT WAS IN THE MEETING
MATERIALS.
COMMENTS HAVE ALREADY BEEN
INCORPORATED.
DOES ANYBODY HAVE ANYTHING THEY
NEED TO SECRETED OR UPDATES
YOU'D LIKE US TO MAKE?
I'M NOT SEEING ANYTHING SO IF
THERE'S NO FURTHER DISCUSSION,
CAN I GET A MOTION ON THE FLOOR
TO APPROVE THE MINUTES?
>> I'LL PUT A MOTION ON THE
FLOOR TO APPROVE THE MINUTES
FROM THE JANUARY MEETING.
>> THANK YOU, DANA.
>> I'LL SECOND.
>> THANK YOU, DANA.
ALL IN FAVOR PLEASE RAISE YOUR
HANDS IN ZOOM.
THANK YOU.
ARE THERE ANY OPPOSED TO
ACCEPTING THE MINUTES.
PUT YOUR DOWN FROM THE PREVIOUS
AND IF THERE'S AN OPPOSED, LET
US KNOW.
I THINK I HAVE TWO IPAD 4 WHICH
I DON'T KNOW WHO THAT IS.
IVANOVA DO YOU HAVE SPECIFIC
CONCERNS ABOUT THE MINUTES THAT
NEED TO BE ADDRESSED?
>> I THOUGHT THAT WAS TO APPROVE
THE MINUTES.
I APOLOGIZE.
>> NO PROBLEM.
AND IPAD 4 DID YOU HAVE ANYTHING
YOU NEEDED CORRECTS IN THE
MINUTES?
>> NO, I'M SORRY.
THIS IS CRAIG JOHNSON.
I'M USING A DIFFERENT IPAD TODAY
SO SORRY ABOUT THAT.
I'M GOOD.
>> AND IS ANYONE ABSTAINING FROM
THE APPROVAL OF THE MINUTES?
THE MAJORITY APPROVE AND WE'LL
ACCEPT THE MINUTES AND POST THE
FINAL ONES TO THE WEBSITE AFTER
THE MEETING OR PROBABLY BY
TOMORROW.
THANK YOU AND I TURN IT BACK
OVER TO JOSH.
>> IT'S MY PLEASURE TO INTRODUCE
DR. TARA SCHWETZ.
SHE'S A PHYSICIST BY TRAINING
AND SERVED AT THE NATIONAL
INSTITUTES OF HEALTH AND THE
WHITE HOUSE OFFICE OF SCIENCE
AND TECHNOLOGY POLICY WHERE SHE
WAS THE ASSIST AND THE DIRECTOR
FOR BIOMEDICAL SCIENCE
INITIATIVES.
SHE LED THE EFFORTS TO STAND UP
THE ADVANCED RESEARCH PROJECT
AGENCY FOR HEALTH OR ARPA-H.
ON RETURNING TO NIH, WE'RE
PLEASED WHEN DR. SCHWETZ WAS
SELECTED TO FILL IN FOR
DR. LARRY TABAK THE DEPUTY
DIRECTOR OF NIH AND CURRENT
ACTING DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH.
DR. TABAK IS A MEMBER OF THE
IACC BUT CALLED AWAY TO A
MEETING AT THE WHITE HOUSE TODAY
AND UNABLE TO JOIN US AND ASKED
DR. SCHWETZ TO JOIN US IN HIS
STEAD.
DR. SCHWETZ.
>> THANK YOU FOR THE
INTRODUCTION AND GOOD AFTERNOON
OR GOOD MORNING TO EVERYONE
DEPENDING ON WHERE YOU ARE.
ACROSS THE COUNTRY AND ACROSS
THE WORLD.
I WANT TO START BY THANKING YOU
FOR THE WORK OF THE WORK OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE AND OF COURSE THEIR
SUPPORT FOR THE AUTISM COMMUNITY
OVER THE YEARS.
I ALSO WANT TO TAKE A MOMENT AND
THANK DR. COURTNEY ACKLIN
SERVING AS THE REPRESENTATIVE
FOR NIH IN THE COMMITTEE IN LIEU
OF DR. TABAK.
AS JOSH MENTIONED, DR. LARRY
TABAK, THE ACTING NIH DIRECTOR
IS UNFORTUNATELY UNABLE TO BE
HERE TODAY BUT SENDS HIS REGARDS
AND I WANT TO EMPHASIZE BOTH HE
AND I APPLAUD THE EFFORTS AND
COMMITMENT OF THIS COMMITTEE AND
OF THE NEW AND RETURN MEMBERS OF
THE IACC WHO I'M TOLD MAKE UP
THE LARGEST AND MOST DIVERSE
COMMITTEE TO DATE WHICH IS
GREAT.
YOUR WORK, THE WORK THE
COMMITTEE DOES PROVIDES AN
IMPORTANT GUIDANCE TO THE
SECRETARY OF HEALTH AND HUMAN
SERVICES ON PRIORITIES AND GAPS
AND OPPORTUNITIES FOR AUTISM
RELATED RESEARCH SERVICES AND
SUPPORT.
AND RECENTLY ON APRIL 2, WE
OBSERVED THE 15th ANNUAL WORLD
AUTISM AWARENESS DAY AND
CONTINUING THROUGHOUT THE MONTH
OF APRIL WHICH IS AS JOSH
MENTIONED IS NATIONAL AUTISM
AWARENESS MONTH WE CELEBRATE,
RECOGNIZE AND SUPPORT PEOPLE ON
THE AUTISM SPECTRUM WHICH IN OUR
NATION INCLUDES ONE IN EVERY 44
CHILDREN AND ONE IN EVERY 45
ADULTS.
AS PART OF THIS CELEBRATION, I
WANT TO EMPHASIZE NIH PROMOTES
ACCEPTANCE, UNDERSTANDING AND
INCLUSION TO CREATE A WORLD
WHERE ALL PEOPLE WITH AUTISM
HAVE THE SUPPORT THEY NEED TO
PURSUE THE LIVES THEY WANT TO
LEAD AND REACH THEIR FULL
POTENTIAL.
AND NIH CELEBRATES THE STRENGTHS
AND THE TALENT OF AUTISTIC
INDIVIDUALS AND THE UNIQUE
CONTRIBUTIONS THEY MAKE TO OUR
SOCIETY.
BEING A RESEARCH ORGANIZATION OF
COURSE NIH IS COMMITTED TO
FUNDING RESEARCH THAT SUPPORTS
THE HEALTH AND WELL BEING OF
PEOPLE ON THE AUTISM SPECTRUM
AND THEIR FAMILIES AND WE STRIVE
TO ACHIEVE THIS BY SUPPORT
RESEARCH PORTFOLIO THAT INCLUDES
A WIDE RANGE OF PROJECTS AND
ACTIVITIES THAT COVER THE LIFE
SPAN OF AUTISTIC INDIVIDUALS.
AND I'M SURE MANY OF YOU ON THIS
COMMITTEE IS WHY YOU'RE HERE BUT
YOU'RE FAMILIAR WITH A LOT OF
OUR EFFORTS BUT JUST TO TAKE A
MOMENT TO CALL OUT A FEW
EXAMPLES.
WE HAVE THE EARLY AUTISM
SCREENING INITIATIVE WHICH
FOCUSES ON DEVELOPING AND
VALIDATING SCREENING TOOLS TO
DETECT AUTISM IN THE FIRST YEAR
OF LIFE AND A FLAGSHIP AUTISM
CENTERS OF AUTISM PROGRAM THAT
PROVIDES RESEARCH INCLUDING
UNDERSTANDING THE BIOLOGY AND
GENETICS OF THE AUTISM SPECTRUM.
IMPROVING DEVELOPMENTAL
OUTCOMES, INCREASING ACCESS TO
SERVICES AND DEVELOPING NOVEL
INTERVENTIONS AND INNOVATIVE
DELIVERY METHODS AND NIH
SUPPORTS ADULTS WITH AUTISM WITH
A FOCUS ON IMPROVING EMPLOYMENT
OPPORTUNITIES AND STRATEGIES TO
MANAGE CO-OCCURRING HEALTH
CONDITIONS.
AND VERY IMPORTANTLY WE'RE
DEDICATED TO DIVERSIFYING THE
AUTISM WORKFORCE THROUGH CAREER
DEVELOPMENT AND ENHANCEMENT
AWARDS.
I'D LIKE TO EXTEND MY GRATITUDE
TO EACH OF YOU WHO SERVE ON THE
IACC FOR YOUR DEDICATION TO
ADDRESSING A LONG LIST OF
CHALLENGES INCLUDING MENTAL AND
PHYSICAL HEALTH, EDUCATION,
EMPLOYMENT, HOUSING, RACIAL AND
ETHNIC DISPARITIES AND SERVICES
AND SUPPORTS TO IMPROVE QUALITY
OF LIFE.
NIH LOOKS FORWARD TO THE NEW
ADDITION OF THE IACC STRATEGIC
PLAN FOR AUTISM SPECTRUM
DISORDER WHICH WILL HIGHLIGHT A
WIDE RANGE OF VITAL ISSUES AND
TOGETHER WE'LL WORK TO ENSURE
PEOPLE ON THE AUTISM SPECTRUM
BENEFIT FROM ADVANCES IN
BIOMEDICAL RESEARCH AND RECEIVE
THE BEST EVIDENCE-BASED SERVICES
AND SUPPORT.
AND ALSO THEY HAVE ENHANCED
OPPORTUNITIES TO PARTICIPATE IN
THEIR COMMUNITIES.
SO WITH THAT, I'LL THANK YOU AND
I THINK WE'RE GOING TO TAKE A
MOMENT, IF I UNDERSTAND TO DO
SOME Q&A.
HAPPY TO ANSWER ANY QUESTIONS.
>> THANK YOU VERY MUCH,
DR. SCHWETZ.
HAPPY TO TAKE ANY QUESTIONS FROM
ANY MEMBERS OF THE COMMITTEE WHO
WOULD LIKE TO ASK DR. SCHWETZ
ABOUT NIH'S ROLE IN AUTISM
RESEARCH OR OTHER MATTERS OF
RELEVANCE.
PLEASE JUST RAISE OUR HAND OR
UNMUTE.
>> WHILE PEOPLE ARE FORMULATING
QUESTIONS I'D TAKE A MOMENT TO
CONGRATULATE HARI TO VANDERBILT.
I DID MY POST-DOC THERE AND IT'S
A GREAT PLACE.
>> DR. AVILA, PLEASE.
>> A QUICK QUESTION.
WE RECENTLY RECEIVED AN NIH
GRANT THAT WE'RE WORKING WITH
VALID POPULATIONS AND WE KNOW
NIH IS LOOKING AT HAVING SOME
COMMON ELEMENTS IN IDENTIFIABLE
INFORMATION OF PARTICIPANTS WERE
PART OF RESEARCH AT NIH GRANTS
AND THAT HAS BEEN A BIG
DISCUSSION WE JUST HAD THIS
MORNING AROUND MANY ASPECTS OF
IDENTIFIABLE INFORMATION IS A
DETERRENT FOR WORKING WITH
VULNERABLE POPULATIONS.
IT'S TAKEN US DECADES TO BUILD
TRUST WITH COMMUNITIES THAT
DON'T TRUST RESEARCHERS OR
ACADEMIA OR SCHOOLS OF MEDICINE
AND NOW LOOKING AT THE CHANGE IN
REQUESTING THAT LONG LIST OF
COMMON ELEMENTS THE PARTICIPANTS
WILL LOOK AT ANYTHING FROM THE
ADVOCACY PERSPECTIVE AND EDUCATE
AGENCIES AROUND UNDERSTANDING
THE IMPORTANCE OF BUILDING TRUST
WORKING WITH VULNERABLE
POPULATION.
>> THAT'S A GREAT QUESTION.
THAT'S ALWAYS SOMETHING WE WANT
TO ENSURE THAT IN ORDER TO FULLY
ENGAGE COMMUNITIES IN RESEARCH
WE HAVE TO HAVE THAT TRUST BUILT
UP AND THE TRUST RELATIONSHIP
AND I THINK SOMETIMES USE THE
PHRASE OR SAYING THAT THESE
THINGS MOVE AT THE SPEED OF
TRUST.
SO YOU CAN'T ALSO JUST -- IT'S
NOT SOMETHING YOU CAN THROW
ADDITIONAL RESOURCES OUT AND
EXPECT THINGS TO SPEED UP.
IT TAKES TIME TO RELATIONSHIPS.
I KNOW THESE THINGS ARE OFTEN
PROGRAM DEPENDENT AND SOMETHING
WE TALK ABOUT IN OUR RAPID ACCEL
ACCELERATION OF DIAGNOSTICS
PROGRAM.
ACROSS THE BOARD THIS IS
SOMETHING THAT IS BEING
CONSIDERED FOR A LOT OF PROGRAMS
AND I ENCOURAGE YOU IF THERE'S
SPECIFIC QUESTION YOUR CURRENT
PROJECT TO REACH OUT TO YOUR
PROGRAM STAFF AND WORK THROUGH
SOME OF THE ISSUES YOU MAY HAVE
OR QUESTIONS YOU MAY HAVE.
>> THANK YOU.
TWO MORE QUESTIONS.
I JUST WANT TO REMIND THOSE WHO
NEED COMMUNICATIVE ASSISTANCE WE
NOW HAVE A PLACE TO SEND
COMMENTS IN THE CHAT IT'S
LABELLED "SEND COMMENTS HERE."
LET ME FIRST TURN TO AMANDA FROM
THE ASSOCIATION OF
ADMINISTRATION FOR COMMUNITY
LIVING.
>> SO MANY ACRONYMS.
I KNOW.
IN ADDITION ACL I'M THE CO-CHAIR
FOR THE -- INTERAGENCY COUNCIL
ON DISABILITY RESEARCH.
AND NOT THAT COUNCIL BUT THE
SUBCOMMITTEE AND THAT'S FOCUSSED
ON DISABILITY STATISTICS.
WHAT WE'RE TRYING TO FIGURE OUT
ALL THE WAY WHAT'S THE PRIORITY
IN TERMS OF DATA AND STATISTICS
AROUND RESEARCH AND A WONDER IF
YOU HAVE ANY COMMENTS ABOUT WHAT
WAYS WE CAN BEST SUPPORT DATA
EFFORTS OR STATISTICS IN EITHER
CASE TO IMPROVE ACCESS FOR THE
RESEARCHERS THAT YOU SUPPORT IN
AUTISM RESEARCH.
>> YEAH, I THINK OBVIOUSLY SOME
OF THE SIMILAR QUESTIONS APPLY
ACROSS THE BOARD AND MORE
BROADLY ACROSS ALL OF BIOMEDICAL
RESEARCH.
THIS IS A REALLY IMPORTANT
QUESTION.
I DON'T KNOW IF THERE'S A
STANDARD ONE I'LL ANSWER TO BUT
I WILL SAY WE'RE LAUNCHING NEXT
YEAR IN JANUARY SOME EFFORTS
AROUND DATA SHARING AND REVISING
OUR POLICY OR IMPLEMENTING OUR
REVISED POLICY THERE.
SO I THINK WE NEED MORE
CONVERSATIONS PROBABLY OFFLINE
TO WORK THROUGH ALL THE DETAILS
AND THERE'S PROBABLY, I'M SURE,
UNIQUE CHALLENGES FOR EACH AREA
OF SCIENCE AND THIS ONE IS NO
EXCEPTION.
>> DR. ROBINSON FROM THE
DEPARTMENT OF LABOR.
SCOTT.
>> THANK YOU, DR. GORDON.
MY QUESTION IS MORE ABOUT AT THE
TOP LEVEL LEADERSHIP, ARE YOU
EXPLORING CREATIVE WAYS FOR
NEWER WAYS DOWN THE PIKE TO
EMPOWER FOCUS ON AUTISTIC ADULTS
SINCE WE TALK A LOT AT THE IACC
MEETINGS AND OTHER SETTINGS HOW
THERE'S AN UNREPRESENTATION OF
THE LIFE COURSE FOCUS.
I DON'T KNOW IF THERE'S NEWER
THINGS COMING DOWN THE PIPELINE
AS FAR AS NIH YOU MAY BE
CONSIDERING OR NEW PURSUITS OR
ACTIVITIES OR MAYBE THAT'S
SOMETHING THAT COULD BE COMING
LATER AS FAR AS I'VE SEEN
INNOVATIVE THINGS INCLUDING THE
CROSS-CONNECT TO EMPLOYMENT AND
HEALTH AND NIH RESEARCH.
CURIOUS ABOUT YOUR THOUGHTS TO
EXPAND THAT LIFE COURSE RELATED
TO FOCUS LIFE IN THE NIH
RESEARCH PORTFOLIO AND
ENHANCEMENT THEREIN.
>> WE'RE ALWAYS LOOKING TO
EXPLORE OPPORTUNITIES AROUND HOW
TO MAKE SURE THAT WE'RE ENGAGING
THE RESEARCH WORKFORCE AND THE
ACTIVITIES THAT CUT ACROSS THE
LIFE SPAN AND JOSH IS PROBABLY
THE MORE EXPERT IN THAT SPACE
THAN I AM TO TALK ABOUT THINGS
HE MAY BE CONSIDERING SPECIFIC
TO AUTISM BUT THE LIFE COURSE I
KNOW HAS BEEN A PRIORITY IN
PREVIOUS STRATEGIC PLANS THAT
HAVE COME OUT AND I THINK WILL
CONTINUE TO BE.
I DON'T KNOW IF JOSH OR SUSAN
WANT TO ELABORATE FURTHER.
>> YEAH, THANKS, TARA.
AND SCOTT, THANKS FOR THE
QUESTION.
I KNOW IT'S AN ISSUE THIS
COMMITTEE IN PREVIOUS ITERATIONS
OFTEN DEALT WITH AND YOU KNOW
WHAT I'LL SAY ALREADY WHICH IS
WE'RE TRYING TO BUILD A
WORKFORCE IN THIS AREA AND WE'VE
BEEN SOMEWHAT SUCCESSFUL OF LATE
TRYING TO GET PEOPLE TO PAY
ATTENTION TO THE LIFE COURSE
ISSUES AND WORK HARD ON
EXPANDING OPPORTUNITIES.
I THINK WE HAVE TIME FOR ONE
MORE QUESTION AND A SEE DENA
GASNER'S HAND UP.
TAKE IT AWAY.
>> I WANT TO PIGGY BACK ON WHAT
SCOTT SAID.
ONE THING I SAW MISSING ACROSS
THE BOARD IN OUR STRATEGIC PLAN
AND RESEARCH PORTFOLIO ABOUT
ADULTS IS A DISPARITY BETWEEN
EARLY INTERVENTION-BASED
DIAGNOSES WHERE WE PUT AN
EMPHASIS ON INTENSIVE SUPPORTS
AT THE TIME OF DIAGNOSIS BUT
PEOPLE HAVE BEEN MISSED BECAUSE
OF A PRIOR ITERATIONS OF THE DSM
NOT INCLUDING THEM ARE NOW WELL
INTO ADULTHOOD IN THEIR 40s, 50s
AND 60s AND GET A PIECE OF PAPER
AND CONFIRMATION AND SENT ON
THEIR MERRY WAY.
IN TERM OF OUR PORTFOLIO, I
THINK LOOKING AT THE VALUE OF
INTENSIVE INTERVENTION AT THE
AGE OF DIAGNOSIS MAY STRENGTHEN
OUR RESEARCH PORTFOLIO.
I NOTICE ALICIA HALLADAY WAS
REFERRING TO SYSTEMS NAVIGATORS.
ADULTS DON'T COME TO A DIAGNOSIS
IN THE BEST PLACE AND SO HAVING
INTENSIVE SUPPORT TO PLUG THEM
INTO SERVICES LIKE WE DO PEOPLE
WHOSE KIDS GET DIAGNOSED AT 2
AND GET EARLY INTERVENTION,
COMPARABLY, MAY BE A REAL
STRENGTH TO THE PORTFOLIO.
>> WE OFTEN FOCUS ON ADULTS AND
CHILDREN AND MY UNDERSTANDING IS
THERE'S A CONTINUED FOCUS ON
THAT TRANSITION SPACE BUT FOLKS
MAY BE CAUGHT IN THE MIDDLE OF
THE TRANSITION YOU WERE
MENTIONING OF THE DIFFERENTING
DIAGNOSTIC CRITERIA AND AS AN
ADULT YOU HAVE DIFFERENT NEEDS
THAN A YOUNG CHILD.
>> I WANT TO THANK DR. SCHWETZ
AND REPRESENTING DR. TABAK AND
WE HAVE COURTNEY WHO KEEPS HIM
APPRISED.
IVANOVA DID YOU WANT TO ASK A
QUESTION?
HI, COURTNEY.
>> I DO.
I WANT TO ASK IS THE NIH
CONSIDERING MAKING SURE THE
POLICY AND RECOMMENDATIONS
THEY'RE PUTTING OUT ABOUT THE
PANDEMIC ALSO DOES IT ALLOW FOR
DISCRIMINATION AGAINST AUTISTIC
PEOPLE?
BECAUSE FOR THE LAST TWO YEARS
THE MANDATES HAVE CAUSED A LOT
OF DISCRIMINATION FOR AUTISTIC
PEOPLE AND I WANT TO MAKE SURE
THEY DON'T DO THAT IN THE FUTURE
AND THAT WE CAN WORK ON AND
ACCOMMODATE AUTISTIC
INDIVIDUALS.
I THINK AUTISTICS HAVE BEEN
ISOLATED BECAUSE THEY CAN'T GET
MEDICAL PROCEDURES AND WANT TO
MAKE SURE WE'RE NOT LEAVING
THOSE FOLKS BEHIND AND ALLOWING
FOR THAT DISCRIMINATION TO
CONTINUE.
I WANT TO SEE IF NIH CONSIDERED
THAT.
>> WE'RE SUPPORTING RESEARCH ON
CERTAIN ASPECTS AND THE IMPACT
OF THE PANDEMIC.
I'M SURE THERE'S MORE WE CAN DO
THIS IS A GREAT AND IMPORTANT
TOPIC WE CAN LEAVE THIS ON BUT
NEEDS MORE EXPLORATION AND
DISCUSSION AROUND WHAT MORE WE
CAN DO TO FURTHER ENHANCE
WHATEVER POLICIES WE'RE PUTTING
OUT IN PARTICULAR AT THE NIH AND
HOW WE CAN UTILIZE OUR ROLE A
RESEARCH AGENCY TO BETTER
ENHANCE THE KNOWLEDGE AND
LEARNING WHAT HAS WORKED AND
ABOUT WHAT HASN'T WORKED.
WE'RE STILL IN THIS VERY DYNAMIC
PHASE IN THE PANDEMIC.
WE'RE STILL WITHIN IT AND HAVE
OPPORTUNITIES TO BE ABLE TO
EXPLORE THAT FURTHER.
THANK YOU FOR THAT QUESTION.
>> THANK YOU.
IVANOVA.
THANK YOU, DR. SCHWETZ AND I
APPRECIATE YOU COMING AND
JOINING US TODAY.
>> THANKS SO MUCH.
GOOD TO SEE YOU ALL.
MOVING ALONG, WE'RE AHEAD OF
SCHEDULE BUT DO WE HAVE ALL OF
OUR GUESTS READY FOR THE NEXT
SECTION.
SUSAN, DO YOU KNOW?
>> WE CAN GET STARTED WITH
TERESA AND HAVE LORI GERHARD.
I WANT TO AGAIN THANKS
DR. SCHWETZ FOR JOINING THE
MEETING AND FIELDING QUESTIONS
FOR WHICH AS USUAL HAS GIVEN US
FOOD FOR THOUGHT FOR FUTURE
DISCUSSION IN THE IACC.
WITH REGARD TO THE LAST QUESTION
DR. SCHWETZ MENTIONED
PERIPHERALLY, NIH DOESN'T SET
POLICIES IT'S CDC AND FDA AND
OTHER ORGANIZATIONS IN THE
GOVERNMENT BUT WE DO PROVIDE THE
RESEARCH BACKBONE TO DEMONSTRATE
THE NEED FOR THOSE POLICIES.
AND SO IT'S CERTAINLY SOMETHING
THIS GROUP COULD DO TO RECOMMEND
ALTERATIONS TO THOSE POLICIES
THAT WOULD BETTER TAKE INTO
ACCOUNT THE NEEDS OF INDIVIDUALS
WITH NEEDS AND THEIR FAMILIES.
THAT MAY BE SOMETHING WE THINK
ABOUT IN PLANNING FOR FUTURE
PANDEMICS.
TO INTRODUCE THE NEXT
PRESENTATIONS WE'LL SWITCH FROM
THE NIH IN RESEARCH TO UPDATES
ON DISABILITY HOUSING PROGRAMS.
PLEASED WE HAVE TWO SPEAKERS
JOINING US TODAY FROM THE
FEDERAL GOVERNMENT SIDE.
WE HAVE DR. TERESA SOUZA A
SOCIAL SCIENCE ANALYST AT THE
U.S. DEPARTMENT OF HOUSING AND
URBAN DEVELOPMENT AND I'D JUST
ADD NIH JUST HAD A GREAT
CONVERSATION WITH HUD ABOUT A
NUMBER OF DIFFERENT AREAS THAT
OVERLAP IN INTEREST AND WE LOOK
FORWARD TO CONTINUING THOSE
COLLABORATIONS.
WE ALSO HAVE MS. LORI GERHARD AT
THE ADMINISTRATION FOR COMMUNITY
LIVING JOINING US TODAY.
DR. SOUZA AND MS. GERHARD WILL
UPDATE US ON HOUSING FOR PEOPLE
WITH DISABILITIES.
THE PRESENCES WILL BE FOLLOWED
BY A VIDEO FROM MS. JULIA
ORLANDO THE DIRECTOR OF THE
BERGEN COUNTY NEW JERSEY HOUSING
AND SERVICES CENTER PRESENT
DR. DANIELS SINCE MS. ORLANDO
COULDN'T JOIN TODAY LIVE BUT ARE
PLEASED SHE WAS ABLE TO
CONTRIBUTE THE VIDEO
PRESENTATION.
AT THE END WE'LL HAVE TIME FOR
QUESTIONS AND DISCUSSION AMONGST
THE IACC MEMBERS.
I JUST WANT TO NOTE, I'LL
APOLOGIZE, I HAVE ANOTHER
OBLIGATION AT 2:00.
I'LL BE STEPPING AWAY FOR A FEW
MINUTES A THAT POINT AND BACK
THEREAFTER AND HERE FOR THE
BALANCE OF THE PRESENTATION.
WITH THAT I'LL TURN IT OVER TO
DR. SOUZA.
>> THANK YOU, JOSH.
I'M IN THE OFFICE OF POLICY
DEVELOPMENT AND RESEARCH AT THE
U.S. DEPARTMENT OF HOUSING AND
URBAN DEVELOPMENT.
I'LL GIVE SOME EXAMPLES OF HUD'S
SUPPORTIVE HOUSING PROGRAM FOR
PEOPLE WITH DISABILITIES AND
RELATED RESEARCH.
THESE ARE THE MAJOR TOPICS I'LL
COVER IN MY PRESENTATION TODAY.
I'D LIKE TO START BY SHARING
HUD'S MISSION TO HAVE STRONG
SUSTAINABLE COMMUNITIES AND
AFFORDABLE HOMES FOR ALL.
THE FIRST THING THAT'S IMPORTANT
TO KEEP IN MIND IS THAT HUD
SERVES ONLY A FRACTION OF THE
PEOPLE WHO NEED AND ARE ELIGIBLE
FOR HOUSING ASSISTANCE.
ACCORDING TO THE LATEST REPORT
TO CONGRESS THERE WERE 13.3
MILLION UNASSISTED RENTERS WITH
VERY LOW INCOME IN 2019, BEFORE
THE PANDEMIC.
THOSE ARE REPRESENTED BY THE
SQUARES ON THE LEFT SIDE OF THE
SLIDE BOTH THE LIGHT AND DARK
GREEN SQUARES.
OF THOSE, 7.8 MILLION HOUSEHOLDS
HAVE WHAT HUD DEFINES AS WORSE
CASE HOUSING NEEDS.
THESE ARE HOUSEHOLD WHO'S PAY
MORE THAN 50% OF THEIR INCOME
TOWARDS RENT, LIVED IN SEVERELY
INADEQUATE HOUSING OR BOTH.
THE HOUSEHOLDS WITH WORSE CASE
HOUSING NEEDS ARE REPRESENTED BY
THE DARK GRAY SQUARES ON THE
LEFT.
ON THE RIGHT YOU CAN SEE THAT
HUD ASSISTS ABOUT 4.6 MILLION
HOUSEHOLDS REPRESENTED BY THE
BLUE SQUARES.
THIS MEANS THAT HUD ASSISTS ONLY
ONE-FOURTH OF THE NEED FOR
RENTAL HOUSING ASSISTANCE.
HUD HAS THREE MAJOR HOUSING
ASSISTANCE PROGRAMS.
THE LARGEST ONE IS THE HOUSING
CHOICE VOUCHER WHICH ASSISTS
OVER 2.3 MILLION HOUSEHOLDS AND
ASSISTANCE THAT GOES TO A FAMILY
OR INDIVIDUAL WHO FINDS AN
AFFORDABLE HOUSING UNIT IN THE
PRIVATE MARKET.
THE SECOND LARGEST PROGRAM IS
THE PROJECT-BASED RENTAL
ASSISTANCE WHICH ASSISTS OVER
1.2 MILLION HOUSEHOLDS.
THIS IS A RENTAL ASSISTANCE TIED
TO A PROPERTY OR UNIT OWNED BY A
NON-PROFIT ORGANIZATION.
AND THE THIRD LARGEST PROGRAM IS
PUBLIC HOUSING WHICH ASSISTS
OVER 800,000 HOUSEHOLDS AND THIS
IS A RENTAL ASSISTANCE TIED TO A
PROPERTY THAT IS OWNED BY A
LOCAL PUBLIC HOUSING AGENCY.
IN ADDITION, HUD HAS TWO SMALLER
SUPPORTIVE HOUSING PROGRAMS.
THE SECTION 202, WHICH IS
TARGETED TO OLDER ADULTS AND
ASSISTS OVER 120,000 HOUSEHOLDS
AND THE SECTION 811 WHICH
TARGETS PEOPLE WITH DISABILITIES
AND ASSISTS OVER 30,000
HOUSEHOLDS.
BUT YOU CAN SEE FROM THE COLUMN
ON THE RIGHT THAT PEOPLE WITH
DISABILITIES ARE ASSISTED ACROSS
ALL HUD PROGRAMS.
OVER OF THE YEARS THE SHARE OF
OLDER HOUSEHOLDS HAS INCREASED
AS THE ASSISTED POPULATION AGES
AND REMAINS IN ASSISTED HOUSING
BUT THE SHARE OF NON-ELDERLY
HOUSEHOLDS WITH DISABILITIES HAS
REMAINED RELATIVELY STABLE.
THAT'S THE BLUE LINE ON THE
SLIDE.
SO OVER THE PAST 10 YEARS PEOPLE
WITH DISABILITIES REPRESENT 34%
TO 35% OF HUD-ASSISTED
HOUSEHOLDS ACCORDING TO HUD
ADMINISTRATIVE DATA.
THE SECTION 811 PROGRAM ALLOWS
PEOPLE WITH DISABILITIES TO LIVE
AS IN DEPENDENTLY AS POSSIBLE BY
SUBSIDIZING THE RENT AND
CONNECTING RESIDENTS TO
APPROPRIATE AND VOLUNTARY
SUPPORTIVE SERVICE.
THE PROGRAM OPERATES IN TWO
WAYS.
FIRST THE TRADITIONAL WAY BY
PROVIDING CAPITAL GRANTS AND
OPERATING SUBSIDIES TO
NON-PROFIT DEVELOPERS OF
AFFORDABLE HOUSING FOR PERSONS
WITH DISABILITIES.
SECOND, IN A NEW WAY THAT WAS
AUTHORIZED BY LAW IN 2012 BY
PROVIDING PROJECT RENTAL
ASSISTANCE TO STATE HOUSING
AGENCIES.
TODAY, I'M GOING TO FOCUS ON THE
SECOND FORM OF ASSISTANCE GIVEN
TO STATE HOUSINGS.
THE NEW SECTION 811 PROJECT
RENTAL ASSISTANCE PROGRAM ALSO
KNOWN AS PRA WAS FIRST
IMPLEMENTED THROUGH A
DEMONSTRATION IN 2012.
UNDER THIS PROGRAM, STATE
HOUSING AGENCY HAVE ENTERED INTO
A PARTNERSHIP WITH STATE AND
MEDICAID AND HEALTH AND HUMAN
SERVICES AGENCIES CAN APPLY FOR
GRANTS THAT SUBSIDIZE THE RENT
FOR PEOPLE WITH DISABILITIES IN
AFFORDABLE HOUSING DEVELOPMENTS.
THE PROGRAMS SUBSIDIZE UP TO 25%
OF UNITS TO ENSURE PEOPLE WITH
DISABILITIES ARE FULLY
INTEGRATED IN THE COMMUNITY,
PARTICIPANTS MUST HAVE EXTREMELY
LOW INCOME AT OR BELOW 30% OF
THE MEDIAN INCOME IN THE AREA,
THEY MUST BE 18 TO 61 YEARS OLD
AT THE TIME OF ADMISSION AND
MUST BE ELIGIBLE FOR MEDICAID OR
OTHER HEALTH AND HUMAN SERVICES.
HUD AWARDED OVER $340 MILLION IN
RENTAL ASSISTANCE GRANTS SINCE
2012 AND OVER 3,000 HOUSEHOLDS
HAVE BEEN ASSISTED SINCE THE
PROGRAM STARTED.
THE POPULATION ASSISTED IS SPLIT
BETWEEN TWO MAJOR GROUPS.
FIRST, PEOPLE EXPERIENCING
HOMELESS OR AT RISK OF
HOMELESSNESS AND PEOPLE
TRANSITIONING OUT OF
INSTITUTIONAL CARE OR AT RISK OF
PLACEMENT IN AN INSTITUTION SUCH
AS A NURSING HOME.
HUD CONDUCTED AN EVALUATION OF
THE SECTION 811 PROGRAM THAT
ASSESSED THE EFFECTIVENESS
COMPARED TO SIMILAR HOUSEHOLDS
IN OTHER HUD PROGRAMS AND
WITHOUT HOUSING ASSISTANCE.
THE EVALUATION WAS LIMITED TO
SIX STATES THAT MADE MORE
PROGRESS MOVING PEOPLE TO
ASSISTED HOUSING AND THE
EVALUATION FOUND THE PROGRAM WAS
VERY WELL TARGETED.
THE 811 PRA RESIDENTS HAVE MORE
NEEDS THAN RESIDENTS IN ANY
OTHER HUD PROGRAM.
IN THOSE STATES, THE PROGRAM
SERVED THE POPULATION WITH HIGH
HEALTH CARE NEEDS AND THIS IS A
TESTAMENT TO THE SUCCESS OF THE
HOUSING AND HEALTH PARTNERSHIPS
AT THE LOCAL LEVEL.
811 PRA RESIDENTS REPORTED HIGH
LEVELS OF AUTONOMY AND
INDEPENDENCE WHICH VAL DATES THE
COMMUNITY INTEGRATION FOCUS OF
THE PROGRAM AND NEIGHBORHOOD
QUALITY INDICATORS WERE MIXED IN
THE STUDY.
WE FOUND 811 PRA RESIDENTS LIVED
IN NEIGHBORHOODS WITH HIGHER
POVERTY RATES BUT WITH GREATER
ACCESS TO PUBLIC TRANSIT AND
WITH HIGHER ACCESS TO
WALKABILITY.
-- COMPARED TO SIMILAR PEOPLE IN
OTHER HUD PROGRAMS.
I ALSO WANTED TO SHARE RESULTS
FROM AN IN-PERSON SURVEY WHERE
WE HEARD DIRECTLY FROM RESIDENTS
ABOUT THEIR EXPERIENCES IN THE
811 PRA PROGRAM.
IN THIS PRESENTATION I'M GOING
TO FOCUS ON TWO AREAS THAT WE
WERE INTERESTED IN.
FIRST, WHETHER 811 PRA RESIDENTS
WERE SUPPORTED IN THEIR HOUSING
SEARCH AND LIVING AT THE
PROPERTY AND SECOND WHETHER
RESIDENTS WERE CONNECTED TO
COMMUNITY-BASED SERVICES.
AND WE FOUND THAT A MAJORITY OF
811 PRA RESIDENTS REPORT
RECEIVING SUPPORT AND OTHER
SERVICES THAT MEET THEIR NEED.
WE ALSO FOUND THAT A MAJORITY OF
811 RESIDENTS REPORT A POSITIVE
EXPERIENCE WITH THEIR HOME-BASED
CARE BUT SOME RESIDENTS REPORT
GAPS IN SERVICES SUCH AS WITH
ASSISTANCE WITH BATHING, MEALS
AND MEDICATION.
THE STUDY ADDRESSED MANY OTHER
AREAS AND IF YOU WANT TO LEARN
MORE I INCLUDED A LINK TO THE
REPORT ON THIS SLIDE.
AND IT ASSISTS NON-ELDERLY
PEOPLE WITH DISABILITIES AND
PEOPLE TRANSITIONING OUT OR AT
RISK OF INSTITUTIONAL CARE AND
PEOPLE EXPERIENCING
HOMELESSNESS, PREVIOUS HOMELESS
OR AT RISK OF HOMELESSNESS.
LOCAL AGENCIES ADMINISTER THE
FUNDS AND ARE ENCOURAGED TO
PARTNER WITH HOMELESSNESS
SERVICES.
HUD AWARD ABOUT 67,000 VOUCHERS
TO PUBLIC HOUSING AGENCIES AND
THERE CURRENTLY 45,000 S
ASSISTED AND ANOTHER 20,000
VOUCHERS AVAILABLE TO NEW
HOUSEHOLDS.
THE EMERGENCY HOUSING VOUCHER IS
A NEW BUT TEMPORARY FORM OF
ASSISTANCE CREATED UNDER THE
AMERICAN RESCUE PLAN TO
SUBSIDIZE THE RENT OF
INDIVIDUALS AND FAMILIES FACING
HOUSING INSTABILITY DURING THE
PANDEMIC.
THE PROGRAM TARGETS PEOPLE
EXPERIENCING HOMELESSNESS AT
RISK OF HOMELESSNESS, RECENTLY
HOMELESS OR PEOPLE FLEEING OR
ATTEMPTING TO FLEE DOMESTIC
VIOLENCE, SEXUAL ASSAULT,
STALKING OR HUMAN TRAFFICKING.
THE PROGRAM RECOGNIZES THE
HIGHER BARRIERS FACED BY THE
TARGET POPULATION TO BE PLACED
IN ASSISTED HOUSING AND PROVIDED
DOLLARS FOR HOUSING ASSISTANCE
SERVICE CAN BE USED FOR SECURITY
AND UTILITY DEPOSITS, MOVING
EXPENSES, LANDLORD INCENTIVES
AND OTHER HOUSING RELATED
EXPENSES.
HUD HAS NEVER PROVIDED THIS TYPE
OF ASSISTANCE OTHER THAN FOR
LIMITED MOBILITY DEMONSTRATIONS
AND WE ANTICIPATE THE FUNDING
WILL HELP IMPROVE SUCCESS RATE
OF FAMILIES UNITS.
LIKE ALL HOUSING VOUCHERS THE
PROGRAM IS ADMINISTERED BY LOCAL
PUBLIC HOUSING AGENCIES BUT IN
THIS PROGRAM HOUSING AGENCIES
ARE REQUIRED TO GET PARTICIPANT
REFERRALS FROM HOMELESSNESS
ASSISTANCE AGENCIES.
OVER 16,000 HOUSEHOLD HAVE BEEN
ASSISTED AND ANOTHER 927
HOUSEHOLDS RECEIVED A VOUCHER
AND NOW LOOK FOR A RENTAL UNIT.
SO I TALKED ABOUT THREE MAJOR
HUD PROGRAMS THAT TARGET PEOPLE
WITH DISABILITIES IN DIFFERENT
WAYS AND SOME OF THE RELATED
EVALUATION AND NOW I'M GOING
FOCUS ON TWO RESEARCH AREAS THAT
ARE CRITICAL TO UNDERSTAND THE
NEEDS AND BARRIERS THAT PEOPLE
WITH DISABILITIES EXPERIENCE IN
THE RENTAL HOUSING MARKET.
THE FIRST IS THE HOUSING
DISCRIMINATION RESEARCH.
THERE'S SEVERAL FEDERAL
NON-DISCRIMINATION LAWS AND THE
OFFICE OF POLICY AND DEVELOPMENT
RESEARCH HAS BEEN STUDYING THE
PRESENCE AND EXTENT OF HOUSING
DISCRIMINATION IN THE RENTAL
MARKET FOR OVER 40 YEARS.
HERE ARE SOME EXAMPLES OF
HOUSING DISCRIMINATION RESEARCH
ON THE BASIS OF DISABILITIES AND
THIS STUDIES ASSESS HOUSING
DISCRIMINATION AGAINST PEOPLE
DEAF OR HARD OF HEARING, PEOPLE
WHO USING WHEELCHAIRS AND PEOPLE
WITH MENTAL ILLNESS AND
INTELLECTUAL OR DEVELOPMENTAL
DISABILITIES.
ALL THE STUDIES FOUND EVIDENCE
OF UNFAVORABLE TREATMENT DURING
THE HOUSING SEARCH PROCESS.
AND FOR A FULL LIST OF ALL
HOUSING DISCRIMINATION RESEARCH
YOU CAN CHECK THE LINK ON THE
SLIDE.
ANOTHER RESEARCH AREA THAT HAS
BEEN CRITICAL TO UNDERSTAND THE
PREVALENCE AND NEEDS OF PEOPLE
WITH DISABILITIES IN
HUD-ASSISTED HOUSING IS THE
EFFORT TO LINK HEALTH AND
HOUSING DATA.
ONE EXAMPLE IS THE ONGOING
COLLABORATION BETWEEN HUD AND
THE NATIONAL CENTER FOR HEALTH
STATISTICS AND CHS TO LINK
HEALTH SURVEY DATA TO HUD
ADMINISTRATIVE DATA.
THIS IS AN ONGOING COLLABORATION
THAT UPDATES HOUSING HEALTH
LINKAGES CONTINUOUSLY.
IN THE LINK SHOWN IN THE, YOU
CAN FIND MORE INFORMATION ABOUT
THE CONTENT OF THE LINK DATA AND
INFORMATION ABOUT HOW
RESEARCHERS CAN ACCESS IT.
HERE ARE SOME EXAMPLES OF
TECHNICAL REPORTS THAT HAVE USED
HUD AND NCHS LINK DATA TO CREATE
A PICTURE OF HUD ASSISTED ADULTS
AND CHILDREN'S HEALTH AND YOU
CAN ACCESS THE REPORTS BY
CLICKING THE PICTURE ON THE
SLIDE.
AND THESE ARE SOME EXAMPLES OF
STUDIES THAT HAVE USED THE LINK
DATA TO UNDERSTAND THE
PREVALENCE AND HEALTH CARE NEEDS
OF PEOPLE WITH DISABILITIES IN
HUD-ASSISTED PROGRAMS.
IN THE STUDY WE FOUND A HIGHER
PREVALENCE OF DISABILITY AMONG
HUD-ASSISTED HOUSEHOLDS COMPARED
TO HUD ADMINISTRATIVE DATA AND
FOUND THAT HUD-ASSISTED ADULTS
WITH DISABILITIES ARE MORE
LIKELY TO BE CONNECTED TO THE
HEALTH CARE SYSTEM THAN THOSE
WITHOUT DISABILITIES BUT HAVE
HIGHER ODDS OF REPORTING UNMET
CARE AND HIGHER ODDS OF GOING TO
AN EMERGENCY ROOM VISIT IN THE
PAST 12 MONTHS.
WE ENCOURAGE RESEARCHERS TO USE
THE LINK DATA, THIS AND OTHER
ONES AND HELP US REFINE OUR
INFORMATION OF THE CONNECTION
BETWEEN HOUSING AND HEALTH AND
IMPROVE OUR PROGRAMS AS THEY
SERVE MORE VULNERABLE PEOPLE AND
HAVE HIGHER HEALTH CARE NEEDS.
THE.
>> THANK YOU, VERY MUCH,
DR. SOUZA.
WE'LL HOLD QUESTIONS IN THE THE
END OF THE PRESENTATIONS SO
WE'LL TO LORI GERHARD FROM ACL.
LORI.
>> THANK YOU.
IT'S EXCITING TO SHARE
INFORMATION ON OUR NEWLY FORMED
HOUSING AND SERVICES RESEARCH
CENTER.
I HAVE CHALLENGES, SOLUTIONS AND
AND NEW HOUSING RESOURCE CENTER
AND HHS HUD PARTNERSHIP.
DIFFICULT TO FIND AND OBTAIN
AFFORDABLE AND ACCESSIBLE
HOUSING.
MORE THAN 15% OF U.S. HOUSEHOLDS
INCLUDE SOMEONE WITH A
DISABILITY BUT ONLY 6% OF HOMES
NATIONWIDE ARE ACCESSIBLE.
1% IS WHEEL CHAIR ACCESSIBLE AND
LESS THAN 6% CAN ACCOMMODATE
MODERATE DISABILITIES.
THIS IS A CHALLENGE THAT WE
CONFRONT.
A 2021 REPORT FOUND THERE WERE
ONLY 40 AFFORDABLE AND AVAILABLE
HOMES FOR EVERY 100 EXTREMELY
LOW-INCOME RENTER HOUSEHOLDS
NATIONWIDE.
40% OF RENTER HOUSEHOLDS WERE
COST BURDEN AND MORE THAN 20%
WERE SEVERELY COST BURDEN.
SO HUD DEFINES RENT BURDEN AS
SPENDING MORE THAN 30% OF YOUR
INCOME ON HOUSING AND SEVERE
RENT BURDEN IS OVER 70%.
SEVERELY COST-BURDENED RENTERS
HAVE TO MAKE DECISIONS HOW TO
SPEND THE LIMITED FUNDS.
FOR INSTANCE, IN THE LOWEST
INCOME QUARTILE SPEND 38% LESS
ON FOOD AND 70% LESS ON HEALTH
CARE THAN OTHERWISE SIMILAR
RENTERS LIVING IN HOUSING THEY
COULD AFFORD.
HOMELESSNESS IS GROWING AMONG
PEOPLE WITH DISABILITIES AND
OLDER ADULTS.
HUD'S 2018 ANNUAL HOMELESS
ASSESSMENT REPORT SAYS 48.5%
REPORT HAVING A DISABILITY THAT
USE HOMELESSNESS SHELTERS.
THAT'S APPROXIMATELY 550,000
PEOPLE.
AND THE NUMBER OF SHELTERED
HOMELESS AGE 51 TO 61 INCREASED
FROM ABOUT 216,000 IN 2007 TO
249,000 IN 2017.
THE NUMBER OF PEOPLE
EXPERIENCING SHELTER AND
HOMELESSNESS ROSE FOR THOSE 62
YEARS OF AGE AND OLDER.
FROM 46,000 TO 76,500.
OLDER ADULTS NOW MAKE UP 23% OF
THE SHELTERED HOMELESS
POPULATION UP FROM 2007.
THE NUMBERS ARE GOING IN THE
WRONG DIRECTION.
HOMELESSNESS IS A SIGNIFICANT
CHALLENGE AFFECTING MANY PEOPLE.
NEARLY 900,000 PEOPLE FALL INTO
HOMELESSNESS HAPPENS EACH YEAR
AND SOMETHING OCCURS WHERE THEY
HAD A HOME AND BECOME HOMELESS.
OVER 580,000 PEOPLE EXPERIENCED
HOMELESSNESS ON A NIGHT IN
JANUARY AND BETWEEN 2017 AND
2020 THE POINT IN TIME COUNT
SHOWED AN AVERAGE OF 562,430
PEOPLE EXPERIENCING
HOMELESSNESS.
PEOPLE EXPERIENCING HOMELESSNESS
ARE NINE TIMES MORE LIKELY TO
DIE FROM AN OPIOID OVERDOSE THAN
THOSE STABLY HOUSED.
SOME OF THE ROOT CAUSES FOR
HOMELESSNESS INCLUDE POVERTY,
DOMESTIC VIOLENCE PARTICULARLY
FOR WOMEN, ACUTE PHYSICAL OR
BEHAVIORAL HEALTH CRISES,
TRANSITION FROM OTHER SYSTEMS
AND INSTITUTIONAL SETTINGS.
SO IN ADDITION TO SOME OF THE
CHALLENGES WE CONFRONT WITH
HOUSING THERE'S ALSO CHALLENGES
IN FINDING, NAVIGATING AND
OBTAINING SERVICES.
PEOPLE OFTEN AREN'T AWARE OF
SERVICES AND THE ARRAY OF
FUNDING STREAMS THAT PROVIDE
SERVICE COMPLEX AND DIFFICULT TO
NAVIGATE AND PROGRAM INNOVATION
AND DISABILITY AGING, HEALTH AND
HOUSING SECTOR SUCCESS
STRATEGIES MAY BE ADDITIONAL IN
STATES AND COMMUNITY.
WE KNOW IN SOME POCKETS THEY
SOLVED THE CHALLENGE BUT WE
DON'T ALWAYS KNOW HOW TO SPREAD
THE INNOVATION ACROSS THE
COUNTRY.
SO THERE'S SEVERAL THINGS
UNDERWAY TO BEGIN TO HELP US ON
THE PATH TO FINDING THE
SOLUTIONS.
THE FIRST IS THE AMERICAN RESCUE
PLAN INVESTMENTS.
AS DR. SOUZA MENTIONED, THERE'S
ADDITIONAL HOUSING VOUCHERS THAT
WERE ISSUED UNDER THE AMERICAN
RESCUE PLAN AND PARTICULARLY I
WANT TO CALL OUT THE 70,000
EMERGENCY HOUSING VOUCHERS.
WE'VE HEARD FROM STATES THESE
EMERGENCY HOUSING VOUCHERS WITH
SOME OF THE WRAP-AROUND SUPPORTS
THEY PROVIDE ARE INSTRUMENTAL IN
HELPING PEOPLE OBTAIN STABLE
HOUSING THE MONEY FOLLOWING THE
PERSONS PROGRAM RECEIVE THE
ABILITY TO BE EXPANDED.
ON MARCH 31, JUST RECENTLY, CMS
ANNOUNCE THE AVAILABLE OF $110
MILLION TO EXPAND ACCESS TO HOME
AND COMMUNITY-BASED SERVICES
THROUGH THE MONEY FOLLOWS THE
PERSON PROGRAM AND IT HELPS
PEOPLE TRANSITION OUT OF
INSTITUTIONS BACK TO THE
COMMUNITY.
CMS ALSO ANNOUNCED THE AGENCY IS
INCREASING THE REIMBURSEMENT
RATE FOR THE MONEY FOLLOWS THE
PERSON SUPPLEMENTAL SERVICE.
THEY'LL NOW BE 100% FUNDED WITH
NO STATE SHARE.
FURTHER, CMS IS EXPANDING THE
DEFINITION OF SUPPLEMENTAL
SERVICES TO INCLUDE ADDITIONAL
SERVICES THAT CAN SUPPORT AN
INDIVIDUAL'S TRANSITIONS FROM AN
INSTITUTION TO THE COMMUNITY
INCLUDING SHORT-TERM HOUSING AND
FOOD ASSISTANCE.
THIS WILL HELP FURTHER ADDRESS
BARRIERS TO COMMUNITY LIVING FOR
PEOPLE ELIGIBLE FOR THESE
PROGRAMS.
AS WELL AS INCREASE COMMUNITY
TRANSITION RATES AND THE
EFFECTIVENESS OF THE MONEY
FOLLOWS PERSON DEMONSTRATION.
AN OPEN DOOR FORUM WILL OCCUR
APRIL 19 TO PROVIDE MORE
INFORMATION ON THE INITIATIVES
AND WE HAVE INFORMATION ON HOW
YOU CAN LISTEN TO THAT CALL ON
THE HOUSING AND RESOURCE CENTER
WEBSITE AND SUGGEST YOU VISIT
THE WHAT'S NEW SECTION TO CALL
AND OBTAIN INFORMATION TO LISTEN
TO THE OPEN DOOR FORUM.
IN ADDITION, THE OLDER AMERICANS
ACT ALSO RECEIVED AN ADDITIONAL
$400 MILLION TO INCREASE THE
AVAILABILITY OR ACCESS TO HOME
AND COMMUNITY-BASED SERVICES AND
ASSISTIVE TECHNOLOGY.
IN JULY OF 2021, HHS AND HUD
FORMED A PARTNERSHIP TO RALLY
TOGETHER ON HOW WE COLLABORATE
AND COORDINATE THE
IMPLEMENTATION OF THE AMERICAN
RESCUE PLAN INVESTMENTS AND
FURTHER STRENGTHEN OUR
PARTNERSHIP ON SUPPORTING
STATES, COMMUNITIES,
ORGANIZATIONS IN HELPING PEOPLE
OBTAIN AND MAINTAIN STABLE
HOUSING AND THE SERVICES THEY
NEED TO ENGAGE IN THE COMMUNITY.
SO WITH THAT, ONE OF OUR
COLLABORATIVE EFFORTS IS THE
HOUSING RESOURCE CENTER WE
ANNOUNCE THE HOUSING AND
RESOURCES CENTER IN DECEMBER AND
THE AGENCIES INCLUDE THE
ADMINISTRATION FOR COMMUNITY
LIVING AND THE ASSISTANT
SECRETARY FOR PLANNING AND
EVALUATION AND THE CENTER FOR
MEDICARE AND MEDICAID SERVICES,
THE SUBSTANCE ABUSE AND MENTAL
HEALTH SERVICES ADMINISTRATION
AND THE U.S. DEPARTMENT OF
HOUSING AND URBAN DEVELOPMENT.
WE ANNOUNCED THE RESOURCE CENTER
AND IT'S A FEDERAL APPROACH TO
PROVIDING RESEARCH, GUIDANCE AND
TECHNICAL ASSISTANCE AND
CREATING PARTNERSHIPS AMONG THE
STATE MEDICAID DISABILITY AND
AGING AGENCIES, THE STATE AND
LOCAL PUBLIC HOUSING AGENCIES
AND AUTHORITIES, DISABILITY AND
AGING NETWORKS AND PROVIDERS,
BEHAVIORAL HEALTH PROVIDERS,
HOUSING AND HOMELESS PROVIDERS.
ONE OF OUR FIRST PRODUCTS IS THE
HSRC OR HOUSING AND SERVICES
RESOURCE CENTER WEBSITE.
THAT IS AT ACL.gov
ACL.gov/HOUSINGANDSERVICES ALL
SPELLED OUT.
IT'S A SINGLE LOCATION WITH LINK
RELATED TO HOUSING AND SERVICES.
AND THE RESOURCE CENTER WILL
COORDINATE TECHNICAL ASSISTANCE,
FACILITATE PARTNERSHIPS,
RECOGNIZE AND SHARE NOVE
INNOVATIONS AND LEVERAGE AND
ALIGN RESOURCE.
WE KNOW IT WILL TAKE ALL OF US
WORKING TOGETHER IN ORDER FOR
PEOPLE TO OBTAIN AND MAINTAIN
STABLE HOUSING AND SERVICES THEY
NEED.
AND THANK YOU FOR THE RESEARCH
AND WORK YOU DO EACH DAY TO
SERVE PEOPLE WITH DISABILITIES,
THEIR FAMILIES, OLDER ADULTS AND
CAREGIVERS.
VISIT THE HSRC WEB PAGE CENTER
TO REVIEW RECORDED WEBINARS AND
REMEMBER THE OPEN DOOR FORUM
COMING UP APRIL 19.
E-MAIL US AT HSRC@HHS.gov TO
TELL US ABOUT THE HOUSING SECTOR
AND HOW YOU'RE HELPING PEOPLE
STAY STABLY HOUSED AND OBTAINING
ACCESSIBLE, AFFORDABLE HOUSING
AND SERVICES.
WE WANT TO KNOW WHAT
PARTNERSHIPS ARE OUT THERE AND
WHAT'S WORKING AND WHAT WE MIGHT
BE ABLE TO HOLD UP FOR
APPLICATION ACROSS THE COUNTRY.
IF YOU'D LIKE TO ASK THE
QUESTION E-MAIL US AT
HSRC@HHS.gov OR IF YOU'D LIKE TO
BE ADDED TO OUR E-MAIL LIST
WHERE YOU'LL RECEIVE UPDATES AS
WE UPDATE THE WEBSITE, PLEASE
E-MAIL US AGAIN AT
HSRC@ACL@HHS.gov.
THANK YOU FOR ALLOWING US TO
SHARE THE INFORMATION ABOUT THE
HOUSING AND SERVICES RESOURCE
CENTER.
THIS CONCLUDES MY PRESENTATION.
>> THANK YOU, LORI FOR THAT
INFORMATIVE PRESENTATION.
I'LL INTRODUCE SUSAN DANIELS FOR
THE VIDEO.
>> WE CAN HEAR YOU JUST FINE.
THANK YOU.
SO WE'RE GOING TO HEAR A LITTLE
BIT ABOUT AUTISM AND
HOMELESSNESS AND ADDITIONAL
INFORMATION IN EXPERIENCES FROM
THE BERGEN COUNTY NEW JERSEY
HEALTH AND HUMAN SERVICES
CENTER.
WE'LL BE HEARING FROM JULIA
ORLANDO FROM THE BERGEN COUNTY
HEALTH AND HUMAN SERVICES CENTER
AND THE MISSION OF THIS CENTER
IS TO END HOMELESSNESS IN BERGEN
COUNTY AND SHE PROVIDED
LEADERSHIP FOR THE COMMUNITY
WIDE EFFORT TO END VETERAN
HOMELESSNESS IN BERGEN COUNTY
AND PROVIDED LEADERSHIP TO LEAD
THEM TO BE THE FIRST IN THE
NATION IN 2017 TO SUCCESSFULLY
REACH FUNCTIONAL ZERO FOR
HOMELESSNESS IN BERGEN COUNTY
AND THE OTHER COMMUNITY TO DATE
TO SUSTAIN THAT ZERO FOR MORE
THAN ONE YEAR.
I'VE THAT'D PLEASURE OF TALKING
TO MS. ORLANDO SINCE BEFORE THE
PANDEMIC ABOUT THE SITUATION SHE
REACHED OUT TO TALK ABOUT THE
SITUATION FACING IN HER HOMELESS
PROGRAM WITH RECEIVING PEOPLE ON
THE AUTISM SPECTRUM INTO THE
PROGRAM AND WANTING TO HEAR FROM
THE IACC HOW THEY MAY BE ABLE TO
BE HELPFUL.
I'LL SHARE A VIDEO WITH YOU THAT
SHE RECORDED FOR US AND THEN
PROVIDE SOME COMMENTS AFTER
THAT.
>> HELLO, MY NAME IS JULIE
ORLANDO THE DIRECTOR OF THE
BERGEN COUNTY HEALTH AND HUMAN
SERVICES CENTER LOCATED IN
HACKENSACK, NEW JERSEY.
WE PROVIDE SHELTER SERVICES AND
SOCIAL SERVICES FOR PERSONS
EXPERIENCING HOMELESSNESS WHO
ARE AGE 18 YEARS OR OLDER WITHIN
OUR COMMUNITY.
I WANTED TO SHARE WITH YOU TODAY
OUR EXPERIENCE WORKING WITH
PEOPLE WITH AUTISM AND
DEVELOPMENTAL DISABILITIES
WITHIN OUR HOMELESS POPULATION.
IF IN ADULT WITH A DEVELOPMENTAL
DISABILITY IS NOT CONNECTED AS A
RESOURCE AS A CHILD OR BEFORE
THE AGE OF 18 IT'S DIFFICULT TO
GET THEM LINKED TO SERVICES ONCE
THEY ARE IN ADULT.
WE'VE HAD SEVERAL INDIVIDUALS
OVER THE YEARS WITH DUAL
DIAGNOSIS OR CO-OCCURRING
DISORDERS WHICH INCLUDE CHRONIC
SEVERE MENTAL HEALTH DIAGNOSIS
AND ALSO ON THE SPECTRUM.
THE PROBLEM FOR THOSE
INDIVIDUALS IS THEY'RE OFTEN
TARGETED AND BECOME THE VICTIMS
OF THEFT AND ABUSE AND PICKED ON
BY OTHER INDIVIDUALS STAYING IN
SHELTER.
THEY ALSO STRUGGLE AT TIMES WITH
IMPULSE CONTROL WHICH MAKES IT
DIFFICULT FOR THE STAFF TO
MANAGE THEM HERE SAFELY IN THE
ENVIRONMENT.
AND WE HAD SINGLE PARENTS WITH
AN ADULT DISABLED CHILD AND THIS
IS A BARRIER AS THE PARENT NEEDS
A SETTING WHERE THEY CAN CARE
FOR THE ADULT CHILD.
AT TIMES THERE HAVE ALSO BEEN
PHYSICAL LIMITATIONS THAT
REQUIRE MORE THAN ASSISTIVE
DEVICES AND UNFORTUNATELY WE ARE
NOT A SETTING FOR THAT AND
MANAGE THOSE INDIVIDUALS THERE
AND UNFORTUNATELY THERE REALLY
ISN'T ANYWHERE TO SEND A FAMILY
UNIT LIKE THAT FOR SHELTER
WITHIN OUR COMMUNITY.
THERE ARE INCREDIBLE BARRIERS
FOR THAT WHEN WE ENCOUNTER
SOMEONE NON-VERBAL IT CAN BE
VERY DIFFICULT FOR THEM TO
NAVIGATE THE SHELTER IN TERM OF
COMMUNICATING NEEDS AND
FOLLOWING DIRECTIONS.
THIS IS DUE TO IT BEING A
DEPENDENT ENVIRONMENT IN THE
SHELTER THOUGH WE HAVE MANY
PEOPLE WITH VARYING CONDITIONS
THEY NEED TO BE ABLE TO MANAGE
THEMSELVES INDEPENDENTLY AND
CAN'T RELY ON SUPPORT FROM
ON-HAND STAFF.
WE DON'T HAVE SPECIALIZED CARE
FOR PEOPLE WE'RE ABLE TO DO
THAT.
WE ALSO HAD INSTANCE WHERE'S
PARENTS HAVE HAD THEIR OWN
DISABILITIES AND HEALTH
CONDITIONS SO THEY ARE NO LONGER
ABLE TO CARE FOR THE ADULT
DISABLED CHILD.
AT TIMES BASED ON THE PARENT'S
DISABILITY THEY DON'T CONNECT
THE CHILD TO APPROPRIATE
RESOURCES INCLUDING THEIR
BENEFITS, INCLUDING SERVICES AT
DDG IN BERGEN COUNTY AND WHEN
THEY'RE NOT LINKED SO RESOURCES
EARLY ON IT RESULTS IN NO PLAN
FOR THEM ONCE SOMETHING HAPPENS
TO THE PARENTS IF THE FAMILY
BECOMES HOMELESS AND THERE'S NO
BARRIER TO SERVE THE POPULATION
WHEN THEY'RE HOMELESS.
FAMILY SHELTERS THAT TIME MINOR
CHILDREN ARE EQUALLY
ILL-EQUIPPED TO CARE FOR WHO IS
BROUGHT TO THE FACILITIES AND WE
NEED TO RECOGNIZE THE SIGNS
SOMEONE MAY HAVE A DEVELOPMENTAL
DISABILITIES AND HAVE BEST
PRACTICES AN RESOURCES TO HELP
INDIVIDUALS IN THAT SITUATION
AND TO PROVIDE DDD AGENCY
CONTACTS IN EACH STATE TO ASSIST
WITH THESE CASES.
WE FEEL STRONGLY THAT IF WE CAN
BEGIN TO EFFECTIVELY ADDRESS THE
ISSUE GROWING WITHIN OUR
POPULATION ESPECIALLY IN LIGHT
OF COVID FAMILY AND INDIVIDUALS
BECOMING DISPLACED FROM
MORATORIUMS ENDING IF WE CAN
HAVE THE RESOURCES AND ATTENTION
NEEDED WE WOULD BE ABLE TO MORE
SUCCESSFULLY SERVE THE
INDIVIDUALS TO HELP GET THEM
BACK INTO HOUSING SAFELY AND
KEEP THEM THERE ABLY TO HAVE A
MEANINGFUL AND PRODUCTIVE LIFE.
THANK YOU FOR LISTENING TO MY
REMARKS TODAY.
>> WE THANK JULIA FOR SHARING
REMARKS WITH US.
IN VIM BASED ON CONVERSATIONS
THAT I'VE HAD WITH JULIA AND
SHE'S HAD WITH OTHER STAFF
BEHIND THE SCENES TO SUMMARIZE
THE PROGRAMS DESCRIBED THERE'S
YOUTH AND YOUNG ADULTS WITH
AUTISM WHOSE FAMILIES ARE UNABLE
TO CARE FOR THEM AND SOMETIMES
THE PARENTS HAVE IDD THEMSELVES
OR MENTAL ILLNESS OR OTHER
COMPLEX NEEDS AND A POPULATION
OF MIDDLE AGE TO OLDER ADULTS
WITH AUTISM OR IDD WHO PLAY HAVE
BEEN LIVING WITH THEIR PARENTS
BUT THEN WHOSE PARENTS PASSED
AND DID NOT HAVE CARE PLANS IN
PLACE FOR THEM.
SOME OF THE SPECIFIC CHALLENGES
SHE NAMED WERE THAT BOTH GROUPS
ARE NOT CONNECTED TO DD SERVICES
EARLIER AND THERE ARE MAJOR
BARRIERS IN TRYING TO CONNECT
THEM AFTER THE FACT IF THEY WERE
NOT CONNECTED PRIOR TO ADULTHOOD
AND SOME OF THE MAJOR CHALLENGES
SHE'S FOUND IN THE SHELTER
ENVIRONMENT INCLUDE SOCIAL AND
EMOTIONAL SKILLS, COMMUNICATION
CHALLENGES, LACK OF SELF-CARE
AND INDEPENDENT SKILLS, HIGH
LEVELS OF ANXIETY, CO-OCCURRING
CONDITIONS AND VULNERABILITY TO
UNSAFE SITUATIONS WITH OTHERS IN
THE SHELTER POPULATION.
FINALLY, HER ASKS WERE SOME HELP
WITH FINDING A WAY TO PROVIDE
HOMELESS SHELTER STAFF WITH MORE
GUIDANCE, TRAINING, TOOL KITS OR
ROAD MAPS TO HELP IDENTIFY
INDIVIDUALS WITH AUTISM OR IDD
AND TO UNDERSTAND HOW TO BEST
ADDRESS THEIR NEEDS AND CONNECT
THEM TO SOCIAL SERVICES AND
SUPPORTS THAT COULD MAKE THEM
MORE SUCCESSFUL IN ASSISTED
HOUSING.
THANK YOU, JULIA FOR SHARING
THAT WITH US TODAY.
I BELIEVE JOSH IS AWAY AT THIS
MOMENT AND WE HAVE TIME FOR
DISCUSSION WITH THE COMMITTEE.
IF ANYONE HAS QUESTIONS, FEEL
FREE TO ASK.
YOU CAN RAISE YOUR HAND IN ZOOM.
GO AHEAD, JAYLIN.
>> THANK YOU.
YOU'RE GETTING INTO ONE OF OUR
FAVORITE AREAS RIGHT HERE AND
THANK YOU FOR THE PRESENTATIONS
MADE TODAY.
SOME OF THE OBSERVATIONS THOUGH
SOMEONE NEEDS TO BECOME HOMELESS
OR INSTITUTIONALIZED TO QUALIFY
FOR THE 811 HOUSING ASSISTANCE.
THIS IS TRAUMATIC.
IS HUD LOOKING AT HOUSING
NAVIGATION SERVICES PAIRED WITH
HOUSING ASSISTANCE TO HELP
TRANSITION PEOPLE FROM ELDERLY
PARENTS' HOMES SO THEY DO NOT
FIRST HAVE TO BECOME HOMELESS?
THAT'S COMING FROM OUR HOUSING
DIRECTOR ASKING THAT QUESTION
THROUGH ME.
THERE ARE SO MANY THINGS ABOUT
HOUSING AND SOME OF THE PEOPLE
THAT WE'RE WORKING WITH THAT ARE
WORKING WITH HOMELESSNESS ARE
STATING THAT IT'S EASILY 20% OF
THE HOMELESS POPULATION THAT
HAPPENS TO BE INDIVIDUALS ON THE
SPECTRUM.
FROM WHAT THEY CAN SAYS FROM THE
TOOLS THEY HAVE AT HAND WHICH IS
VERY CONCERNING AND WE DO NEED
TO WORK WITH THOSE THAT DON'T
HAVE HOMES BUT IN A WAY IT SEEMS
LIKE WE ARE HAVING THE AMBULANCE
IN THE VALLEY RATHER THAN
PUTTING A SAFEGUARD RAIL ABOVE
THE CLIFF SO PEOPLE DON'T HAVE
TO EXPERIENCE HOMELESSNESS
BEFORE THEY'RE ABLE TO
TRANSITION INTO A HOME.
COMMENTS.
>> I'M HAPPY TO ANSWER THAT AND
IT'S IMPORTANT TO CLARIFY THE
PROGRAM'S TARGET NOT ONLY
HOMELESSNESS AND LIVING IN AN
INSTITUTION BUT INDIVIDUALS AT
RISK OF BECOMING HOMELESS HAVE
SOME FORM OF HOUSING INSECURITY
OR ARE AT RISK OF MOVING INTO AN
INSTITUTION WHEN THEY ARE
LEAVING THEIR PARENTS' HOUSE AND
NEED SERVICES AND SUPPORT TO
LIVE IN THE COMMUNITY.
THERE'S MANY CASES LIKE THAT.
I WANTED TO CLARIFY THAT THE
PROGRAM TRIES TO TARGET
POPULATIONS NOT ONLY THE ONES
THAT ARE READY IN THIS SEVERE
HOUSING INSECURITY SITUATIONS
BUT ALSO INDIVIDUALS THAT COULD
POTENTIALLY BECOME VULNERABLE TO
THEM.
AND WE DON'T KNOW -- RERECOGNIZE
THAT WE NEED MORE RESEARCH TO
TRY TO UNDERSTAND THE DIFFERENT
NEEDS PEOPLE WITH DISABILITIES
HAVE AMONG PEOPLE EXPERIENCING
HOMELESSNESS AND WE'RE LEARNING
MORE ABOUT IT AND DOING MORE
RESEARCH AROUND THAT.
>> EXCELLENT.
I'D LIKE TO FOLLOW UP WITH A
COMMENT TOO.
SOME OF THE SITUATIONS ABOUT
HOUSING FOR INDIVIDUALS IMPACTS
THE INDIVIDUAL BUT ALSO THE
FAMILIES BECAUSE MOTHER AND
FATHER ARE GETTING OLDER, THEY
ARE NOT ABLE TO TAKE CARE OF
SITUATIONS.
THEY MAY BE DEALING WITH SERIOUS
ILLNESSES OF THEIR OWN.
THEY'RE ABLE TO PERHAPS WORK
WITH HELPING THEIR ADULT CHILD
AND SECURING THE APPROPRIATE
HOUSING BUT IT IS MADE VERY
DIFFICULT OR IT IS MADE A
TREMENDOUS BURDEN THEY DON'T
ALWAYS HAVE HELP WITH.
AND PARENTS CAN LEAVE THE HOUSE
PERHAPS BUT DON'T ENSURE THERE'S
ENOUGH MONEY TO TAKE CARE TAXES
AND MAINTENANCE AND THOSE TYPES
OF THINGS WHICH ALSO CAUSE
HOMELESSNESS.
SO THERE'S A NUMBER OF WAYS
HOMELESSNESS CAN COME ABOUT
THERE'S BOUNDARIES HAVE OPTIONS
TO BE ABLE TO FIND APPROPRIATE
HOUSING FOR THEMSELVES.
>> LORI, DO YOU WANT TO COMMENT
ON THAT.
WE HAVE RESOURCES THAT HUD
RECEIVES ONLY ALLOWS THE HUD TO
ASSIST A FRACTION OF THE PEOPLE
WHO NEED AND ARE ELIGIBLE FOR
HOUSING ASSISTANCE.
AND THERE'S ECONOMIC BOUNDARIES
AND THAT'S SOMETHING WE'RE
LIMITED BY STATUE.
AND WHAT IS DONE IS BETTER
CONNECT HOUSING AND HEALTH AND
THAT'S SOMETHING THAT THIS
PARTNERSHIP BETWEEN HHS AND HUD
IS WHAT WE'RE TRYING TO DO IS
MAKE SURE THAT THE CONNECTIONS
BETWEEN THE SUPPORTIVE SERVICES
AND THE HOUSING WORK HAND IN
HAND TO PUT PEOPLE IN A
SITUATION THAT IS STABLE AND
THAT IT IS IN THE COMMUNITY AND
THAT IT HAS THE SUPPORTS THAT
THE PERSON NEEDS TO LIVE
INDEPENDENTLY.
>> BUT HOUSING DEFINITELY IS A
SITUATION THAT NEEDS MORE THAN
THE FOUR WALLS.
IT NEEDS ALL SORTS OF SUPPORTS.
THERE'S ANOTHER QUESTION THAT
COMES UP FREQUENTLY AS I TALK TO
BUILDERS THAT WOULD LIKE TO DO
THINGS WITH AFFORDABLE HOUSING
THAT COULD INCLUDE DISABILITIES
BUT THERE'S SO MUCH RED TAPE IT
ISN'T WORTH THEIR FINANCIAL
INVESTMENT TO BE ABLE TO GO
AHEAD AND BUILD MORE APARTMENT
COMPLEXES WHERE THERE'S EVEN A
PORTION OF THE INDIVIDUALS THERE
THAT CAN BE WITH DISABILITIES.
AND HARD FOR THE GRANTS AND
PROCEDURES THERE.
CAN THERE BE WORK DONE TO MAKE
CERTAIN WE CAN EXPEDITE THESE
THINGS BECAUSE THERE'S PEOPLE
THAT REALLY WANT TO DO THINGS
AND CAN'T AFFORD TO IN THEIR
BUSINESS MODELS.
>> JAYLIN I'M GOING INTERJECT
AND MOVE THINGS ALONG.
LET'S COME BACK TO YOUR QUESTION
IF THERE'S TIME AT THE END.
THERE'S A NUMBER OF IACC MEMBERS
WHO HAVE ADDITIONAL QUESTIONS
BUT I APPRECIATE THE POINT.
IT'S AN IMPORTANT POINT TO BE
RAISED.
AND I THINK DENA GASNER IS NEXT.
>> THANK YOU, JOSH.
LIVING IN POVERTY IS A TRAUMA.
SO MANY AUTISTIC PEOPLE LIVING
ON SSI, SOME EVEN ON SSDI HAVE
SUCH LIMITED INCOME AND SOME OF
THESE HOUSING PROGRAMS -- I
TRIED TO APPLY FOR ONE FOR THE
ELDERLY ASKED KNOW SUBMIT A
CO-SIGNER.
FOR GOVERNMENT-SUPPORTED HOUSING
I THINK THAT'S AN OUTRAGEOUS
REQUEST.
AND I APPRECIATE ALL THE
INFORMATION WE GOT AND IT
SUGGESTS TO ME THAT WE DON'T
KNOW THE LEVEL OF HOUSING ISSUES
AS IT AFFECTS SPECIFICALLY
AUTISTIC PEOPLE.
MUCH OF YOUR STATISTICAL
INFORMATION WAS MORE BROADLY
APPLIED.
SO MY QUESTION IS FIRST OF ALL,
CAN WE GET SOME MORE SPECIFIC
INFORMATION EXCLUSIVE TO AUTISM
AND THE OTHER THING I'M VERY
CONCERNED ABOUT, AS SHE
EXPRESSED NEW JERSEY IS THE SAME
AS NEW YORK, IF YOU DIDN'T GET A
DD DIAGNOSIS THOUGH IT WASN'T
AVAILABLE TO YOU BEFORE THE AGE
OF 18, MANY PROGRAMS ARE NOT
AVAILABLE TO YOU.
THE DSM5 RECOGNIZES AUTISM COULD
HAVE BEEN PRESENT HISTORICALLY
BUT UNRECOGNIZED YET WE DON'T
SEE A POLICY CHANGE TO SUPPORT
THAT REALITY.
SO HOW CAN WE HELP HOUSING
PEOPLE TO BE MORE SENSITIZED TO
THAT AND MORE CARING AND LESS
DISRESPECTFUL TO PEOPLE.
THE WAY I WAS TREATED WAS BAD
AND I HAVE BIG GIRL PANTIES BUT
MORE VULNERABLE PEOPLE ON THE
BRINK OF HOMELESSNESS THIS TYPE
OF TREATMENT BECOMES ABUSIVE.
HOW CAN WE ENHANCE FACILITATE
UNDERSTANDING AS A BODY AND
COMMUNITY.
>> I'M SORRY ABOUT YOUR
EXPERIENCE.
I'M NOT SURE I KNOW THE
SPECIFICS TO BE ABLE TO ADDRESS
IT.
IN TERMS OF THE RESEARCH
SPECIFIC TO PEOPLE WITH
DISABILITIES WITH AUTISM, WE'RE
TRYING TO DO MORE AND WE'RE IN
COVERINGS WITH OTHER AGENCIES
AND TRYING TO FIND WAYS WITH
LINKED FORMS TO AND LOOKING AT
BARRIERS AND LOOKING AT
ASSISTANCE IN HOUSING.
>> IF I CAN JUMP IN THE QUESTION
YOU RAISED IS IMPORTANT.
INCREASING PEOPLE'S AWARENESS OF
THE NEEDS OF PEOPLE WITH AUTISM
IS REALLY ESSENTIAL.
WE EXPERIENCE SIMILAR SITUATIONS
AS SOMETIMES WHEN EMERGENCY
DISASTERS OCCUR AND HELPING TO
TRAIN UP EMERGENCY STAFF AND OUR
ASSISTIVE TECHNOLOGY PROGRAMS
HAVE BEEN QUITE INSTRUMENTAL IN
HELPING TO INCREASE EDUCATION
ABOUT THE NEEDS OF PEOPLE WITH
AUTISM AND WHAT ASSISTIVE
TECHNOLOGY MAY BE AVAILABLE TO
HELP ENGAGE WITH THEM AND
SOMETIMES A PERSON IS
COMMUNICATIVE BUT CAPABLE OF
COMMUNICATING IF THEY HAVE
DEVICES TO COMMUNICATE WITH
PEOPLE VERBALLY.
WE FOUND THERE'S BEEN SOME
STRATEGIES BUT WE KNOW WE HAVE A
LOT OF WORK TO DO AND WILL TAKE
ALL OF US TO CONTINUE TO
INCREASE KNOWLEDGE AROUND HOW WE
CAN BETTER INTERACT AND
UNDERSTAND PEOPLE WITH AUTISM
AND BE RESPONSIVE TO THEIR
NEEDS.
>> THANKS FOR YOUR EFFORTS.
>> MORANICA, YOU'RE NEXT.
>> HI, EVERYBODY.
THIS IS STEVEN.
I'LL READ HER COMMENT FOR HER.
>> PLEASE DO.
>> AS AN AUTISTIC ADULT OF
COLOR, LIKE MANY IN OUR
COMMUNITY, HAS EXPERIENCED
HOMELESSNESS.
I AGREE WITH MANY OF THE
BARRIERS SHARED.
THE SETTINGS ARE NOT EQUIPPED
FOR OUR NEEDS.
FIRST, SOMETIMES IT'S NEARLY
IMPOSSIBLE TO GET HELPED IN THE
FIRST PLACE BECAUSE THERE'S A
BUREAUCRATIC BARRIER UNLESS YOU
KNOW WHERE 5 MILLION DOCUMENTS
ARE WHICH YOU MAY NOT HAVE IN A
CENTRAL PLACE.
WHEN HAVE YOU EXECUTIVE
FUNCTIONING ISSUES AND MAY NOT
HAVE ALWAYS HAD ACCESS TO ALL
YOUR OWN LEGAL AND MEDICAL
DOCUMENTATION IS A CHALLENGE AND
IF YOU'RE TRANS-GENDER
NON-CONFORMING NAMES CAN BE A
PROBLEM.
THE PLACES ARE ALSO A SENSORY
NIGHTMARE, LOUD, BRIGHT,
HORRIBLE SMELLS.
TO BE FORCED TO HAVE CERTAIN
ROOMMATES AND/OR CHORES, BEING
FORCED TO ENGAGE IN CERTAIN
ACTIVITIES.
HAVING TO WAIT EXTENDED PERIOD
OF TIME FOR AN OVER BURDENED
CASE MANAGER TO FIGURE OUT HOW
TO HELP YOU ONLY TO BE HANDED A
HUGE PACKET OF OUTDATED
RESOURCES AND THE STRUCTURE TO
GO AT THIS PLACE TO APPLY TO
THIS PLACE.
THERE'S NOT ALTERNATIVE NEEDS OF
COMMUNICATION TO HELP NAVIGATE A
COGNITIVELY INACCESSIBLE THINGS
LIKE VIOLENCE AND BE INEBRIATED
AND BEING EASY PREY FOR THE
PREDATORS AND IT'S EASY TO BE
ASSAULTED IN THOSE PLACES AND
FOR THOSE IT'S DIFFICULT TO FIND
PLACE TO CRASH THAT NIGHT OR
STAY WITH THE AER.
THERE'S LITTLE TO NO
UNDERSTANDING OF THE UNIQUE
NEEDS THAT MAY EXIST IN THE
AUTISTIC POPULATION AND SEEMS TO
BE LITTLE EFFORT TO ADDRESS
THEM.
THIS IS ALSO EXACERBATED IF
YOU'RE FROM A MARGINALIZED
RACIAL OR GENDER IDENTITY.
IT'S TRAUMATIC TO HAVE
INSTABILITY IN ONE'S HOUSING IN
THE FIRST PLACE.
THE SITUATIONS OFTEN
RETRAUMATIZE YOU.
>> THANK YOU.
ANY REACTIONS FROM OUR SPEAKERS?
AND WE HAVE A STUDY LOOKING AT
SUCCESSFUL APPROACHES IN THE
HOUSING SEARCH PROCESS FOR
PEOPLE WITH DISABILITIES TRYING
TO IDENTIFY WHAT ARE THE MAJOR
BARRIERS FOR PEOPLE WITH
DIFFERENT DISABILITIES AND
COMING FROM DIFFERENT SETTINGS
AND HAVING OTHER DIFFERENT
SITUATIONS AND TRYING TO
UNDERSTAND WHAT ARE SUCCESSFUL
APPROACHES THAT HELP THEM APPLY
FOR HOUSING ASSISTANCE AND LOOK
FOR HOUSING AND SEARCH FOR
HOUSING VISIT UNITS AND IDENTIFY
THE UNITS AND MOVING TO UNITS.
WE ARE TRYING TO UNDERSTAND
WHERE THE RESOURCES AND WHERE
COMMUNITIES HAVE BEEN SUCCESSFUL
AT TRANSITIONING PEOPLE INTO
ASSISTED HOUSING.
AND THERE'S A DIRECTION OF
IDENTIFYING SPECIFIC NEEDS AND
CONNECTING THE SERVICES AND
HOUSING SIDE AND THERE'S A
RECOGNITION CERTAIN POPULATIONS
NEED HELP IN APPLYING FOR
HOUSING IN LOOKING FOR HOUSING
AND IN MOVING INTO HOUSING.
THAT'S SOMETHING THAT IT'S GOOD
TO SEE AND THE MAINSTREAM
VOUCHER PROGRAM ISSUED AN AEXTRA
$500 FOR PHAs TO HELP WITH THE
HOUSING SEARCH PROCESS AND
INCENTIVING LANDLORD TO
PARTICIPATE MORE IN HUD
PROGRAMS.
I THINK ALL THE EFFORTS CAN
HOPEFULLY MAKE THINGS BETTER.
>> IVANOVA, YOUR NEXT.
>> ARE THERE LOOKING AT POLICIES
MAKING IT ACCESSIBLE FOR PEOPLE
AND IS THERE A WAY WE CAN LOOK
AT LIKE MAKE IT SO THAT PEOPLE
AND DISCRIMINATION IS HAPPENING
INTERDIRECTLY AND HOW DO WE
ADDRESS THAT WITH THE SHELTERS
TO MAKE SURE THERE ARE WAYS TO
MODIFY THINGS TO ACCOMMODATE
AUTISTICS?
>> THANK YOU.
>> HUD HAS THE FAIR HOUSING AND
EQUAL OPPORTUNITIES OFFICE THAT
IS DEVOTED TO ENFORCING FIGHTING
AGAINST DISCRIMINATION FIGHTING
AGAINST PEOPLE WITH DISABILITIES
AND I KNOW THAT THE CASE OF
PEOPLE WITH AUTISM IS SOMETHING
THAT THEY HAVE SEEN AND WORKING
ON CASES LIKE THAT AND FINDING
RESOLUTIONS AND MAKING SURE
THERE'S NO DISCRIMINATION IN THE
HOUSING MARKET.
>> I'D ADD TO THAT, ACL FUNDS
PROTECTION AND ADVOCACY
ORGANIZATIONS IN EVERY ONE OF
THE STATES AND TERRITORIES
AVAILABLE TO SUPPORT PEOPLE WITH
DISABILITIES WHO MAY BE FEELING
AS THOUGH THEY'RE NOT BEING
TREATED APPROPRIATELY OR BEING
DISCRIMINATED AGAINST, THEY'RE
THERE TO HELP AND SUPPORT YOU
THROUGH THOSE PROCESSES AND IN
ADDITION THROUGH THE OLDER
AMERICANS ACT WE HAVE A NETWORK
OF ELDER RIGHTS SERVICES
THROUGHOUT ALL THE STATES AND
TERRITORIES THAT ARE AVAILABLE
TO TO HELP SUPPORT INDIVIDUALS
WHO MAY BE EXPERIENCING
DISCRIMINATION.
I WOULD OFFER THOSE RESOURCES
TOO.
>> THANK YOU, TERESA AND LORI,
I'M BAD WITH NAMES AND THE
PERSON WHO PRESENTED BY VIDEO
FROM NEW JERSEY.
AND I HAVE A COMMENT AND BRIEF
QUESTIONS.
THE COMMENT WAS ON THE TOOL KIT
MENTIONED EARLIER IN THE
PRESENTATION AS FAR AS THE
POSSIBILITIES OF HOMELESSNESS
AND AUTISTIC PEOPLE AND OTHER
FOLKS WITH DEVELOPMENT
DISABILITIES AND NIMH FUNDED
WITH A RESEARCH GRANT SEVERAL
YEARS AGO RESEARCH THAT LED TO A
TOOL KIT FOR HEALTH CARE FOR
ACCESS FOR AUTISTIC ADULTS IT'S
LIKE A PORTAL SITE SET UP FOR
BOTH HEALTH CARE SERVICE
PROVIDERS IS ONE HALF OF THE
PAGE AND THE OTHER HALF IS FOR
AUTISTIC ADULTS AND ALLIES AS
FAR AS ACCESSING THE HEALTH CARE
SYSTEM AND WONDERING IF THAT'S
SOMETHING THAT ACL AND HUD COULD
POTENTIALLY EXPLORE INTERAGENCY
WITH YOUR SISTER AGENCIES AS FAR
AS THE CROSS-CONNECTION
ESPECIALLY BECAUSE OF THE
EMPLOYMENT FOCUS BECAUSE OR
CONNECTING OR HAVING STABLE
HOUSING LIKE TRANSPORTATION IS
CROSS-CONNECTED TO OBTAIN AND
MAINTAIN MEANINGFUL EMPLOYMENT.
I ALSO WONDERED ON THE DATA END,
I'M A BIG FAN OF HAVING BETTER
QUALITATIVE AND QUANTITATIVE AND
OUR DATA COMES FROM THE UNITED
KINGDOM RATHER THAN HERE.
IS MOST THE DISABILITY DATA WE
DO HAVE IN HOUSING OVER ATA CL
AND HUD ACROSS DISABILITY OR
MAYBE BROADER OR COGNITIVE
DISABILITY?
DO WE HAVE ANYTHING AUTISM
SPECIFIC IN THE DATA ON HOUSING
AND HOMELESSNESS AND DO WE HAVE
ANYTHING THAT INTERCONNECTS BACK
TO DATA AND PAST EMPLOYMENT FOR
FOLKS?
>> WE'LL LOOK INTO THAT GREAT TO
KNOW ABOUT IT.
AND AS FAR AS MORE DATA ON
DISABILITY.
THERE'S THE AMERICAN COMMUNITY
SURVEY, THE AMERICAN HOUSING
SURVEY.
THOSE SURVEYS INCLUDE SIX
QUESTIONS ABOUT DISABILITIES
THAT GIVE US MORE INFORMATION
ABOUT PEOPLE THAT HAVE COGNITIVE
DISABILITY
DISABILITIES.
THE FIRST STUDY WAS LOOKING AT
DISABILITIES IN GENERAL BUT THE
SURVEY REALLY PRESENTS AN
OPPORTUNITY TO LOOK MORE CLOSELY
AT CHILDREN WITH AUTISM, FOR
EXAMPLE.
THAT'S A QUESTION THAT THE
NATIONAL HEALTH INTERVIEW SURVEY
HAS.
WE COULD DO MORE RESEARCH THERE
AND WE HOPE RESEARCHERS WOULD
ACCESS THE DATA.
THE DATA IS AVAILABLE TO
RESEARCHERS AND RESEARCHERS WITH
MORE MORE EXPERTISE IN THE AREA
ARE WELCOME AND WE ENCOURAGE
THEM TO ACCESS THE DATA AND HELP
US UNDERSTAND MORE WHAT THE
NEEDS ARE THE EXTENT OF PEOPLE
IN THE AUTISM SPECTRUM OF PEOPLE
IN THE HUD-ASSISTED HOUSING.
>> THANK YOU, SCOTT FOR SHARING
THAT TOOL KITS AND WE'D BE
INTERESTED IN PARTNERING WITH
DOL AND CONTINUING TO BUILD TOOL
KITS AND PROVIDE SUPPORTS AND
RESOURCES AS WE CAN.
ON THE DATA PIECE, I'LL HAVE TO
CONSULT OUR COLLEAGUES THAT WORK
IN OUR INSTITUTIONAL DISABILITY
TO GET YOU A SPECIFIC ANSWER ON
THAT QUESTION BUT ONE THE THINGS
WE SHARED IS WE HAVE DIFFERENT
TYPES OF RESEARCH IN ADDITION TO
THE WORK THAT DR. REICHERT
MENTIONED FUNDED TO CONTINUE TO
LEARN MORE ABOUT PEOPLE WITH
DISABILITIES AND HOW WE CAN
BETTER SUPPORT THEM.
AND WE LOOK FORWARD TO
CONTINUING TO WORK WITH DOL.
>> THANKS, LORI.
WE APPRECIATE OUR PARTNERSHIPS
WITH SISTER AGENCY.
>> AND TO ADD SCOTT THE
INTERAGENCY WORK GROUP ON AUTISM
IS ALSO HAPPY TO HELP FACILITATE
ON THAT END TOO.
>> COOL, THANKS, SUSAN.
>> I WANTED TO FOLLOW-UP ON THE
QUESTIONS ABOUT ENFORCING
ACCESSIBILITY AND PUBLIC
SERVICES INCLUDING HOMELESS
SHELTERS.
I'M A LITTLE BIT CONCERNED THAT
SIMPLY USING THE FHA WOULD NOT
BE ADEQUATE TO ADDRESS SOME OF
THE MORE STRUCTURAL BARRIERS
THAT WE SEE IN SHELTER PROGRAMS
WITHOUT A FUNDAMENTAL ALTERATION
THERE'S SOME THINGS THAT MAKE
SHELTERS PROGRAMMATICALLY
INACCESSIBLE TO SOME PEOPLE AND
THEY'RE NOT PARTICULARLY SAFE
FOR AUTISTIC PEOPLE.
THEY CAN'T ACCOMMODATE PERSONAL
CARE ASSISTANCE OR PROVIDERS
COMING IN THE SHELTERS TO ASSIST
PEOPLE.
THE SHELTER STAFF DO NOT PROVIDE
SERVICES THEMSELVES.
SOMEONE WHO HAS TECHNOLOGY MIGHT
NOT BE ABLE TO ACCESS THE
SHELTER BECAUSE IT'S SO LIKELY
TO BE STOLEN.
AND I WANT TO ASK THAT WE ALSO
THINK ABOUT TITLE II TO ENSURE
LOCALITIES IF THEY'RE GOING TO
BE PROVIDING SHELTER SERVICES TO
THE GENERAL POPULATION MIGHT
REALLY HAVE TO EXPLORE OPTIONS
TO PROVIDE EQUIVALENT PROGRAMS
TO PEOPLE WITH DISABILITIES WHO
REALLY CAN'T ACCESS A HOMELESS
SHELTER AND INCLUDING HOUSING
FIRST APPROACHES AND GETTING
PEOPLE INTO INDIVIDUAL HOUSING
AS SOON AS POSSIBLE SO PEOPLE
DON'T SPEND SIGNIFICANT TIME IN
SHELTERS THAT ARE NOT GOING TO
WORK.
>> WE HAVE A COMMENT OR QUESTION
TO BE READ OUT LOUD.
STEVE.
>> THIS QUESTION IS FROM
LINDSAY.
IN THE OVERVIEW ABOUT THE
SUBSIDIZED RENT PROGRAM AND
VOUCHERS, YOU MENTIONED THE AGE
QUALIFICATION IS 18-61.
WHY IS THE AGE CUT OFF CURRENTLY
AT 61 AND IS THERE A STRATEGY
BEING CREATED TO PROVIDE SUPPORT
FOR INDIVIDUALS OVER THE AGE OF
61?
>> SO HUD AT 62 HUD CONSIDERS
THE POPULATION OF OLDER ADULTS
AND WE HAVE AEIGHT OF PROGRAMS
THAT TARGET THE PROGRAM AND WE
HAVE SECTION 202.
AND SUPPORTIVE HOUSING FOR OLDER
ADULTS, THERE ARE A LOT OF OTHER
SERVICES THAT CAN BE PROVIDED.
WE HAVE SERVICE COORDINATORS AND
ACROSS-HUD PROGRAMS WE SERVE
OLDER ADULTS WITH DISABILITIES
AND OLDER ADULTS IN GENERAL AS
IT WAS SHOWN ONE OF THE SLIDES.
SO IT ISN'T A POPULATION THAT IS
NOT SERVED BUT WE HAVE SPECIFIC
PROGRAMS BY STATUTE TARGETED TO
OLDER ADULTS AND WE HAVE
SPECIFIC PROGRAMS BY STATUTE
TARGETED TO NON-WHAT WE CALL
NON-PEOPLE WITH DISABILITIES WHO
NEED SUPPORTIVE HOUSING.
>> THANK YOU FOR THAT.
JENNY AND YETTA AND WE'LL COME
TO A CLOSE IN TIME FOR OUR
BREAK.
>> JENNY REQUESTED I READ THE
COMMENT.
THANK YOU FOR READING THE
QUESTION.
MY QUESTION IS RELATED TO
DISPLACEMENT DUE TO NATURAL
DISASTER EVENTS SUCH AS TORNADOS
AND HURRICANES AND ARE THERE
TOOLS IN PLACE FOR FAMILIES AND
AUTISTIC INDIVIDUALS DISPLACED
DUE TO THESE EVENTS?
SHARE ANY INFORMATION YOUR TEAMS
HAVE ON FOLLOWING UP WITH
AUTISTIC PEOPLE TO TRANSITION TO
TEMPORARY HOUSING DURING THESE
EVENTS AND THEREAFTER INTO MORE
PERMANENT HOUSING.
UP IN
>> I CAN START, DR. SOUZA.
THANK YOU FOR THE QUESTION,
JENNY.
THE ASSISTIVE TECHNOLOGY
PROGRAMS WORK CLOSELY WITH THE
EMERGENCY MANAGEMENT AGENCIES TO
HELP PROVIDE TRAINING AND
TECHNICAL ASSISTANCE TO THE
STAFF THAT WORK IN THOSE
PROGRAMS.
WE KNOW THERE'S MORE WORK TO DO
BUT TO BE ABLE TO BETTER
INTERACT WITH PEOPLE WITH AUTISM
AND PROVIDE THE APPROPRIATE
SUPPORTS AND WE CAN GET BACK TO
DR. DANIELS WITH ADDITIONAL
INFORMATION THAT WE USE IN THAT
APPROACH AND I THINK YOUR OTHER
QUESTION WAS ABOUT HELPING
PEOPLE TRANSITION INTO HOUSING
WHEN THEY ARE IN AN EMERGENCY
AND I DON'T KNOW IF DR. SOUZA
HAS ANYTHING TO MENTION BUT I
KNOW THE AGING AND DISABILITY
AGENCIES THAT ACL FUNDS AND OUR
REGIONAL OFFICES AND STAFF ARE
VERY ENGAGED IN RESPONDING TO
EMERGENCIES AND TRYING TO ASSIST
PEOPLE TO GET SOME TEMPORARY
HOUSING IF THEY'RE IMPACTED BY
EMERGENCIES AND TEMPORARY
SERVICES AND HELP SUPPORT THEM
ON THE PATH BACK TO STABLE
HOUSING AND SERVICES.
DR. SOUZA, I DON'T KNOW IF
THERE'S ANYTHING MORE YOU MIGHT
ADD FROM THE HUD PERSPECTIVE?
>> I'LL HAVE TO TALK TO MY
COLLEAGUES AND PROVIDE -- I'M
SURE THERE IS A LOT HUD DOES.
HUD IN CASES OF DISASTERS HAS
THE CDBG DISASTER ASSISTANCE
THAT IS AUTHORIZED BY CONGRESS
WHENEVER THERE ARE SITUATIONS
LIKE THAT AND HUD PROVIDES
ASSISTANCE TO LOCAL GOVERNMENTS
TO ADDRESS THE NEED FOR HOUSING
ASSISTANCE AFTER A DISASTER AND
THAT SYSTEM HAS RULES THAT
ALLOWS THE FUNDING TO MOVE MORE
QUICKLY.
BUT I'LL HAVE TO GO BACK TO MY
COLLEAGUES AT FHO AND THE
PROGRAM OFFICES.
I'M SURE WE HAVE TRAINING AND
GUIDANCE TO HELP LOCAL AGENCIES
THAT ADMINISTER HUD PROGRAMS TO
ADDRESS THE NEEDS OF PEOPLE WITH
DISABILITIES AND IN THE AUTISM
SPECTRUM DURING DISASTER
EMERGENCY SITUATIONS.
I'LL GET BACK TO SUSAN WITH SOME
RESOURCES WE HAVE.
>> THANK YOU.
YETTA.
>> THANKS, JOSH AND THANKS TO
ALL THE SPEAKERS TODAY.
NO ONE CAN DENY THERE'S A NUMBER
OF CHALLENGES AS IT RELATES TO
THE AUTISM COMMUNITY AND HOUSING
HOWEVER, AS I LISTEN TO MS.
ORLANDO, I WAS THINKING ABOUT
THE INDIVIDUALS AND FAMILIES NOT
CONNECTED TO RESOURCES.
MY MIND IMMEDIATELY WENT TO THE
FAMILIES SUPPORTING AUTISTIC
ADULTS WHO MAY NOT HAVE BEEN
DIAGNOSED.
THEIR FAMILIES SLIPPED THROUGH
THE CRACKS.
NO ONE WAS THERE TO HELP AND
GIVE DIAGNOSES IN THE FIRST
PLACE WHICH IS CONTRIBUTING TO
WHY THEY CAN'T GET RESOURCES AS
ADULTS.
IF YOU HAVE RESOURCES, IF YOU
HAD THE MONEY, FINE, YOU CAN GET
A DIAGNOSIS WITH DIFFERENT
CIRCUMSTANCES THOUGH IT SHOULD
NOT BE BUT THAT'S UNFORTUNATELY
HOW THESE THINGS GO.
I APPRECIATE HER COMMENT AND
TOOL KIT FOR THE PROVIDERS AND
REALLY MORE WORK NEEDS TO BE
DONE TO TRAIN AND EDUCATE
PROVIDERS WHO SERVE THOSE OFTEN
MARGINALIZED.
WHEN WE THINK OF DOING RESEARCH
AND WHO ARE WE DOING THE
RESEARCH ON WE CAN TALK ABOUT
THE SPECIFIC AGENCIES BUT I
THINK OFTEN TIMES WE DON'T
NECESSARILY THINK ABOUT HOMELESS
POPULATION OR FAMILIES WHO
EXPERIENCE ABUSE.
AROUND AS COVID HAS COME UP AND
PEOPLE WHO WERE MANDATORY
REPORTERS WHO SAY THERE'S GOING
ON IN SPECIFIC HOUSEHOLDS WE'RE
NOT NECESSARILY REACHING THE
INDIVIDUALS AND FAMILIES.
WHO KNOWS WHAT THE OUTCOME WILL
BE AFTER COVID BUT I WANT TO SAY
THE WORK I'M DOING IN D.C. FROM
THE D.C. SERVICE AND FAMILY
AGENCY AND WE HAVE SOMETHING
CALLED FAMILY SUCCESS CENTERS IN
WARDS 7 AND 8 THAT SERVE
FAMILIES THAT ARE LOWER
RESOURCED AND THEY ALSO HAVE AN
INTEREST IN AUTISM.
THERE IS A NEED FOR AUTISM
KNOWLEDGE AND TRAINING AND WE
NEED TO THINK MORE STRATEGICALLY
HOW TO REACH OUT TO UPLIFT THE
COMMUNITY AS A WHOLE AND THANK
YOU FOR ALLOWING ME TO SHARE MY
COMMENTS.
>> THANK YOU.
WE APPRECIATE THE ACTIVE
CONVERSATION BETWEEN THE
PRESENTERS AND THE COMMUNITY AND
WE APPRECIATE FOR THE PUBLIC TO
HEAR ABOUT THE PROGRAMS.
CLEARLY WE HAVE A LOT OF WORK TO
DO BUT WE ALSO THAT'S AN
EXCELLENT DEMONSTRATION OF WHAT
THE IACC IS ABOUT AND WE'RE
RIGHT ON TIME TO ALLOW US TO
TAKE A 15-MINUTE BREAK
WE'RE ABOUT TO START A
SIGNIFICANT SECTION OF OUR
MEETING WHERE WE'RE GOING TO
HAVE LOTS OF DISCUSSIONS AMONGST
THE IACC MEMBERS.
SINCE OUR LAST MEETING I'VE BEEN
GETTING LOTS OF QUESTIONS AND
COMMENTS ABOUT THE ROLE OF
VARIOUS IACC MEMBERS AND ASKING
OUR CHARGE AND WHAT'S THE
PURPOSE OF THE MEETING AND A
REALIZED IT'S SOMETHING WE
SHOULD PROBABLY SPENT A LITTLE
BIT OF TIME THINKING ABOUT.
I WANTED TO REITERATE AND
CLARIFY WHAT WE'RE ALL TRYING TO
DO HERE.
THAT WILL SERVE AS A GOOD
STARTING POINT TO THEN THE NEXT
SECTION OF OUR MEETING THAT'S
GOING TO BE ABOUT BUSINESS WE
NEED TO ATTEND TO THE STRATEGIC
PLAN AND THE SUMMARY OF ADVANCES
AND LEAD INTO TOMORROW'S MEETING
WHERE WE'LL HAVE A PANEL
DISCUSSION ON COMMUNICATION
BECAUSE WHAT I WANT TO TALK TO
YOU ABOUT IS THE COMMUNICATION
AMONGST ALL OF US ON THE IACC.
CONGRESS MANDATED SPECIFIC
DUTIES.
WE'RE CHARGED WITH MONITORING
WILL HAVE AUTISM RESEARCH AND
RESEARCH AND MAKING
RECOMMENDATIONS TO IN THE SECTOR
OF HEALTH AND HUMAN SERVICES
REGARDING ACTIVITIES WRIT LARGE
BEYOND JUST RESEARCH.
MUCH AS WE DID IN THE LAST
SEGMENT WHERE WE TALKED ABOUT
HOUSING POLICY AND THINGS THAT
THE HOUSING POLICY FOLKS SHOULD
TAKE INTO ACCOUNT WHEN
CONSIDERING INDIVIDUALS AND
FAMILIES WITH AUTISM.
IN PARTICULAR THE STRATEGIC PLAN
FOR AUTISM RESEARCH AND RELEVANT
POLICIES IS ONE OF OUR PRIMARY
MECHANISMS TO MAKE
RECOMMENDATIONS TO HHS AND TO
OTHER FEDERAL AGENCY.
MUCH OF OUR TEAM DURING THIS
MEETING AND OTHERS WILL BE
DEVOTED TO COMPLETING THESE
REPORTS.
AN DITION TO THE AUTISM CARES
ACT THERE'S OTHER LAWS THAT
GOVERN OR CONDUCT INCLUDING THE
FEDERAL ADVISORY COMMITTEE ACT
OR FACA.
THESE LAWS ARE MEANT TO ENSURE
IACC ACTIVITY OBJECTIVE,
TRANSPARENT AND ACCESSIBLE TO
ALL.
IT'S MY RESPONSIBILITY AS CHAIR
OF THE COMMITTEE AND
DR. DANIELS' RESPONSIBILITY AS
THE EXECUTIVE SECRETARY TO GUIDE
THE IACC IN MEETING THESE
OBLIGATIONS AND A RESPONSE ACT
BOTH OF US TAKE SERIOUSLY.
WE ALSO KNOW YOU ALL TAKE YOUR
RESPONSIBILITIES VERY SERIOUSLY
AND WE GREATLY APPRECIATE EACH
AND EVERY ONE OF YOU ON THE
COMMITTEE FOR VOLUNTEERING YOUR
TIME TO SERVE.
WE UNDERSTAND.
IT'S A SUBSTANTIAL COMMITMENT IN
TIME AND ENERGY AND HAVE TO
ACKNOWLEDGE IN RISK BEING OUT
HERE TALKING ABOUT ISSUES OF
IMPORTANCE TO THE AUTISM
COMMUNITY.
WE WANT TO MAKE SURE IT'S A
WORTHWHILE EXPERIENCE FOUR AND
AND WE'RE MAKING ADJUSTMENTS TO
OPTIMIZE THE EXPERIENCE AND TO
EVERYONE THEIR FULL VOICE.
AND IT'S FAMILIAR FOR US IN THE
PANDEMIC ENVIRONMENT.
ANOTHER ADJUSTMENT, THIS IS IT
THE LARGEST COMMITTEE WE'VE EVER
HAD.
WE'VE HAD IT ADAPT TO
ACCOMMODATE THAT BUT IT'S NOT
JUST TECHNOLOGY AND IT'S NOT
JUST SIZE THAT SETS THIS GROUP
APART FROM PREVIOUS ITERATIONS
FROM THE IACC.
WE MADE EFFORTS TO BROADEN THE
REPRESENTATION ON THE COMMITTEE
WITH ADDITIONAL FEDERAL AGENCIES
AN ADDITIONAL MEMBERS INTEREST
THE AUTISM COMMUNITY WRIT LARGE.
AND THE ADVOCATES REFLECT A
BROADER PART OF THE SPECTRUM
THAT'S AUTISM AND YOU ALL
MEMBERS, RESEARCH MEMBERS ALL
THE MEMBERS OF OUR COMMITTEE
WERE SELECTED BASED UPON THE
LIVED EXPERIENCE AND EXPERTISE
THAT YOU BRING TO THE TABLE.
IS THE COMMITTEE IS MEANT TO
BRING TOGETHER ADULTS AND
LEADERS OF RESEARCH, ADVOCACY
AND SERVICE ORGANIZATIONS AS
WELL AS OFFICIALS FROM THE
FEDERAL AGENCIES INVOLVED IN
AUTISM RESEARCH AND DISABILITY
SERVICES.
AND WE EACH SERVE MORE THAN ONE
ROLE.
MANY ARE PERSONS ON THE AUTISM
SPECTRUM OR THE PARENT OF A
CHILD ON THE AUTISM SPECTRUM
AND/OR AN AGENCY HEAD OR
RESEARCHER OR AUTISTIC ADULT OR
PARENT.
IT'S THE ROLE AND CHARGE FOR
EACH OF US TO BRING OUR DIVERSE
POINTS OF VIEW AND EXPERTISE TO
THIS TABLE.
AND TO DO TWO VERY IMPORTANT
THINGS.
SHARE FROM OUR OWN EXPERIENCE
AND PERSPECTIVES AND
THOUGHTFULLY LISTEN TO OTHERS
INCLUDING COMMITTEE MEMBERS,
SPEAKERS AND MEMBERS OF THE
PUBLIC WHO SHARE THEIR COMMENTS.
AFTER WE'VE SHARED AND LISTENED
IT'S OUR JOB TOGETHER TO LOOK
FOR COMMON GROUND WHERE ACTION
MAY BE POSSIBLE AND TO COME TO
CONSENSUS ON RECOMMENDATIONS AND
ADVICE TO THE SECRETARY SO THE
ACTIONS CAN BE TAKEN OUT.
IF TOO MUCH TIME IS SPENT
SHARING AND TOO LITTLE LISTENING
OR LEARNING THAN OUR FOCUS
BECOMES OUT OF BALANCE AND THIS
CAN LEAD TO POLARIZATION AND
LOWER THE PROBABILITY OF FINDING
THE COMMON GROUND AND MOVING
FORWARD.
COMING TO CONSENSUS WILL REQUIRE
US TO BE WILLING TO UNDERSTAND
THE PERSPECTIVES OF OTHERS, TO
STEP AWAY FROM THE POLARIZED
EDGES OF AN ISSUE AND MOVE
TOWARDS THE MIDDLE TO MAKE
PROGRESS.
I WANT TO ENSURE EVERYONE ON THE
COMMITTEE AND PUBLIC COMMENTERS,
I WANT TO MAKE SURE THEY FEEL
COMFORTABLE SHARING EXPERIENCES
DURING THE MEETINGS.
WE HEARD OF THE CHALLENGES THAT
PEOPLE IN THE AUTISM COMMUNITY
ARE FACING IN THEIR DAY TO DAY
LIVES WHETHER THAT'S MANAGING
THE AFFECTS OF A CO-OCCURRING
CONDITION OR FOR THEMSELVES OR A
FAMILY MEMBER.
GIVEN THESE ISSUES, IT IS
INEVITABLE OUR DISCUSSIONS WILL
GET EMOTIONAL AND STRESSFUL FROM
TIME TO TIME.
IT IS INEVITABLE YOU MAY
STRONGLY DISAGREE WITH COMMON'S
COMMENTS FROM TIME TO TIME GIVEN
THE RANGE OF OPINIONS AND
EXPERIENCES REPRESENTED HERE.
IT IS OUR JOB AS COMMITTEE
MEMBERS TO LISTEN AND TO TAKE
ALL COMMENTS INTO CONSIDERATION.
IMPORTANTLY, NORD TO LISTEN WE
CANNOT MAKE ASSUMPTIONS ABOUT
ANOTHER PERSON'S EXPERIENCE.
WE MUST REALIZE THAT WE ALL FEEL
MANY OF THE SAME THING,
FRUSTRATION, ANGER, PASSION
ABOUT OUR VIEWS AND INDEED
NERVOUSNESS ABOUT THE
EXPERIENCE.
WE WANT TO HONOR EACH PERSON'S
WILLINGNESS TO SHARE AND TREAT
THAT WILLINGNESS WITH RESPECT.
WHEN IT'S YOUR TURN TO SHARE
USING A RESPECTFUL TONE IS
HELPFUL TO THOSE LISTENING EVEN
WHEN EXPRESSING ISSUES WHERE WE
FEEL STRONGLY.
WHEN IT'S YOUR TURN TO LISTEN,
PLEASE REMEMBER WE ARE ALL HERE
FOR THE SAME REASON.
WE ALL CARE DEEPLY ABOUT
IMPROVING THE LIVES OF
INDIVIDUALS WITH AUTISM,
FAMILIES AND COMMUNITIES.
THIS IS TRUE FOR COMMITTEE
MEMBERS AND WE ALL DIFFERENT
ABILITIES AND STYLES AND MAY NOT
ALWAYS KNOW HOW TO SAY THINGS IN
A WAY OTHER CAN APPRECIATE SO
REMEMBER WHEN YOU LISTEN,
REMEMBER WHEN YOU DISAGREE WITH
WHAT'S BEING SAID THE PERSON IS
ON YOUR SIDE.
THE COMMENTER, SPEAKER, SHARER
IS ON THE SAME SIDE OF TRYING TO
HELP SO HOPEFULLY THIS WILL HELP
NOT GET CAUGHT UP IN CONTROVERSY
BUT WITH A GREATER
REPRESENTATION FROM BE AN AUTISM
AROUND OUR TABLE IT MAY BE
CHALLENGING FOR ALL OF US TO
UNDERSTAND AND BE UNDERSTOOD.
SPEAKING SLOW LANGUAGE AND USING
SENSITIVE LANGUAGE AVOIDING
TERMS THAT MAY DEMEAN OTHERS.
WE MAY NOT ALWAYS KNOW WHAT
ANOTHER PERSON TAKES AS
DEMEANING SO IF SOMEONE FINDS
LANGUAGE DEMEANING, SPEAK UP AND
REMEMBER WE'RE NOT TRYING TO
INTENTIONALLY EXCLUDE OR DEMEAN
ANYTHING SO SIMPLY ASKING FOR
SOMEONE TO REPEAT THEMSELVES OR
SPEAK SLOWER OR USE DIFFERENT
LANGUAGE WILL HELP US ALL
UNDERSTOOD EACH OTHER BETTER AND
WORK BETTER TOGETHER.
IT'S MY HOPE MOVING FORWARD WE
CAN KEEP ALL THESE THINGS IN
MIND EVEN THOUGH WE'RE
INDIVIDUALS WITH DIFFERENT
POINTS OF VIEW AND THE GOAL IS
TO CREATE A COLLECTIVE VOICE.
ABOVE ALL ELSE, IT'S OUR
OBLIGATION TO LISTEN TO OTHERS
AS THEY SHARE THEIR EXPERIENCES
AND TO LEARN FROM EACH OTHER.
WE'RE ALL STILL LEARNING AND I
WANT TO EMPHASIZE HOW MUCH I
VALUE THIS OPPORTUNITY TO LEARN
FROM ALL OF YOU.
WITH THAT INTRODUCTION, I'M
GOING TO TURN THINGS OVER TO
SUSAN FOR THE NATIONAL AUTISM
COORDINATOR UPDATE AND SHE'LL
FOLLOW WITH THE IACC COMMITTEE
BUSINESS.
THANKS FOR YOUR ATTENTION.
>> THANK YOU, JOSH.
>> I'M READY TO GIVE YOU THE
UPDATE AND THANK YOU FOR SHARING
THE SENTIMENTS AND I ENCOURAGE
EVERYONE TO WORK TOGETHER ON THE
COMMITTEE TO BE EFFECTIVE.
SO FOR OUR UPDATE TODAY I HAVE
SOME UPDATES TO SHARE WITH YOU
FROM THE WHITE HOUSE AND GLOBAL
POLICY AS WELL AS U.S. FEDERAL
ADVISORY COMMITTEE UPDATES.
THESE ARE HERE IN ORDER FOR THE
COMMITTEE TO BE ABLE TO HEAR
SOME OF A SELECTED NUMBER OF
UPDATES FROM AROUND THE
COMMUNITY THAT MIGHT HELP YOU IN
YOUR WORK AS A COMMITTEE MEMBER.
FIRST, FROM THE WHITE HOUSE IN
MARCH 2022, PRESIDENT BIDEN
APPOINTED 21 NEW COMMITTEE
MEMBERS MANAGED BY THE
ADMINISTRATION BY COMMUNITY
LIVING AND ADVISES THE PRESIDENT
AND SECRETARY OF HHS ON PEOPLE
RELATED TO PEOPLE WITH
DISABILITIES AND WE'LL BE
POSTING THEIR MEETINGS ON OUR
WEBSITE AS WELL IF YOU WANT TO
SEE THAT.
ON MARCH 15, 2022, YOU ALL MAY
BE AWARE BUT PRESIDENT BIDEN
SIGNED INTO LAW THE $1.5
TRILLION CONSOLIDATED
APPROPRIATIONS ACT OF 2022.
THAT SENDS FEDERAL AGENCIES
$14.5 BILLION FOR SPECIAL
EDUCATION AND $6 BILLION FOR
HOME AND COMMUNITY-BASED
SERVICES.
ON APRIL 2, PRESIDENT BIDEN
ISSUED THE 2022 PROCLAMATION FOR
AUTISM AWARENESS DAY AND
REAFFIRMED HIS ADMINISTRATION'S
COMMITMENT AND SUPPORT FOR
OPPORTUNITIES FOR PEOPLE ON THE
AUTISM SPECTRUM AND THEIR
FAMILIES.
ALSO THE UNITED NATIONS OBSERVED
WORLD AUTISM AWARENESS DAY AND
THE U.N.'S SUPPORT AFFIRMED OF
RIGHTS TO PARTICIPATE IN SOCIETY
AND THE 2030 AGENDA FOR
SUSTAINABLE DEVELOPMENT.
THE SECRETARY GENERAL
ACKNOWLEDGED THAT COVID-19 HAS
EXACERBATED MANY INEQUALITIES
AND HIGHLIGHTS THE CRITICAL
IMPORTANCE OF COMMUNITY-BASED
SUPPORT SYSTEMS SUCH AS SYSTEMS
FOR INCLUSIVE EDUCATION AND THE
U.N.'S SPECIAL EVENT TOOK PLACE
APRIL 8 AND THE THEME WAS
INCLUSIVE QUALITY EDUCATION FOR
ALL.
IT WAS ORGANIZED BY THE U.N. IN
SUPPORT WITH THE SUPPORT OF
CIVIL SOCIETY PARTNERS INCLUDING
THE AUTISTIC SELF-ADVOCACY
NETWORK AND THE GLOBAL AUTISM
PROJECT AND THE FOUNDATION.
WE ALSO PROVIDED THE LINK IN
CASE ANYBODY WANTS TO GO BACK
AND WATCH THAT.
WE ALSO WANTED TO BRING TO YOUR
ATTENTION THE WORLD HEALTH
ORGANIZATION OR THE WHO HAS
LAUNCHED ITS ONLINE CAREGIVER
SKILLS TRAINING PACKAGE.
IN ADVANCE OF WORLD AUTISM
AWARENESS DAY THIS ONLINE
TRAINING WAS ANNOUNCED AND IT IS
FOR CAREGIVERS OF CHILDREN WITH
DEVELOPMENT DELAYS AND
DISABILITIES.
THIS PROGRAM HAS BEEN PILOTED IN
MORE THAN 30 COUNTRIES AND
TEACHES SKILLS TO PROMOTE THE
WELL BEING OF CHILDREN AND IT
INCLUDES RECORDED SESSIONS ON A
VARIETY OF TOPICS AND ALSO HAS
INFORMATION TO HELP CAREGIVERS
IMPROVE THEIR OWN WELL BEING.
AND IN APRIL, WHO'S GOING TO BE
LAUNCHING COMPANION MANUALS FOR
IN PERSON FACIL ITERS IN
TRAINING AND IT WAS DEVELOPED IN
COLLABORATION WITH AUTISM
SPEAKS.
ANOTHER UPDATE I WANTED TO BRING
YOU WAS ON THE CANADIAN AUTISM
SPECTRUM DISORDER ALLIANCE.
I WAS ABLE TO BE A PART OF THEIR
MEETING THIS PAST WEEK AND
WANTED TO SHARE A LITTLE BIT
WHAT THEY'VE BEEN DOING.
WIZ FORMED IN 2007 FOCUSSED ON
ADDRESSING THE ISSUES AUTISTIC
CANADIANS AND THEIR FAMILIES
FACE ACROSS THE LIFE SPAN AND
HAS BEEN IN THE FOREFRONT OF
CREATING A NATIONAL AUTISM
STRATEGY LIKE OUR STRATEGIC PLAN
ADDRESSING FUNDING AND POLICIES
FOR THE AUTISM COMMUNITY IN
CANADA.
AND OVER THE YEARS THERE'S BEEN
A NUMBER OF CONSULTATIONS WITH
STAKEHOLDERS BRINGING IN
STAKEHOLDER INPUT AND THEY
ISSUED A BLUEPRINT FOR A
NATIONAL ASD STRATEGY.
IN 2020 THEY ISSUED A ROAD MAP
FOR A NATIONAL AUTISM STRATEGY
THAT FOCUSSED ON THE PROCESS AND
TIME LINE FOR THAT NATIONAL
STRATEGY.
AND IN THE FUTURE THEY HOPE TO
FORM AN ADVISORY COMMITTEE WITH
BROAD REPRESENTATION FROM ACROSS
THE PROVINCES IN CANADA.
THEY OVERSEE THE READY, WILLING
AND ABLE PROGRAM WITH INCLUSION
OF CANADA AND MAY BE INTERESTED
FOR SOME OF YOU INTERESTED IN
EMPLOYMENT.
AS A SAID, THEY RECENTLY HELD
THEY'RE EIGHTH ANNUAL CANADIAN
LEADERSHIP SUMMIT APRIL 4 AND 5
AND COVERED EQUITY, DIVERSITY
AND INCLUSION IN POLICY
DEVELOPMENT INCLUDING INDIGENOUS
AND OTHER UNDER REPRESENTED
POPULATIONS AND SOME OF THE
OTHER TOPICS THEY COVERED WERE
EMPLOYMENT, HOUSING,
NON-SPEAKING AUTISM AND THE
EXPERIENCE OF ADULTS DIAGNOSED
IN LATER LIFE.
IT INCLUDED THE PANEL ON AUTISM
STRATEGIC PLAN AND PROSPECTIVES
AND LESSONS LEARNS AND COUNTRIES
WERE U.S., U.K., MALTA, AUTISM
EUROPE AND THE PUBLIC HEALTH
AGENCY OF CANADA AND I WAS ABLE
TO SHARE THE ROLE OF THE IACC
STRATEGIC PLAN IN POLICY IN THE
U.S.
NEXT I'D LIKE TO SHARE SOME
UPDATES FROM ADVISORY COMMITTEES
WORKING AND THE DISABILITY
RELATED ISSUES.
FIRST, THE FEDERAL PARTNERS IN
TRANSITION.
THEY RECENTLY HELD A MEETING
MARCH 17, 2022 AND THEY'RE
MEETING FEATURED THE OFFICE
LABOR OF DISABILITY EMPLOYMENT
POLICY AND INCLUDED
REPRESENTATIVES OF THE CENTER
FOR ADVANCING POLICY ON
EMPLOYMENT FOR YOUTH.
YOU MAY BE INTERESTED IN THAT.
WITH THE INTERAGENCY COMMITTEE
ON DISABILITY RESEARCH OR THE
ICDR, THEY RECENTLY PUBLISHED
THEIR 2021 ICDR ACCOMPLISHMENTS
REPORT AND IT HIGHLIGHTS
RESEARCH THROUGHOUT FY20-21 AND
THE EXECUTIVE COMMITTEE HELD A
MEETING FEBRUARY 24 WHERE THEY
BRAIN STORMED AND ASKED FOR
INPUT ON HOW THE ICDR COULD
SHAPE ITS FOCUS ON THREE NEW
AREAS WHICH ARE EQUITY,
DISABILITY DATA AND STATISTICS
AND COVID-19 AND REHABILITATION
RESEARCH.
THE NATIONAL COUNCIL ON
DISABILITY WHICH SAY FEDERAL
AGENCY PUBLISHED IN FEBRUARY
2022 A NEW HEALTH EQUITY
FRAMEWORK FOR PEOPLE WITH
DISABILITIES AND HELD A VIRTUAL
MEETING TO SHARE WITH THE
PUBLIC.
THIS FRAMEWORK IS A BLUEPRINT
THAT IS GOING TO HELP POLICY
MAKERS TO DISPARITIES AND
INEQUITIES WITHIN DISABILITY AND
INCLUDED INPUT FROM ADVOCACY
ORGANIZATIONS AND THERE'S FOUR
PILLARS INCLUDING THE
DESIGNATION OF PEOPLE WITH
DISABILITIES AS A SPECIAL
MEDICALLY UNDER SERVED
POPULATION TO ESTABLISH THIS IS
A DISPARITY POPULATION AND
CLINIC CARE CURRICULA TO TRAIN
PROVIDERS ON ALL DISABILITIES
ACROSS THE LIFE SPAN WHICH
RELATE TO TRAINING FOR ADULT
PROVIDERS.
REQUIRING ACCESSIBILITY OF
MEDICAL DIAGNOSTIC EQUIPMENT AND
IMPROVING DATA CAPTURE WITH
DISABILITY STATUS IN ALL PUBLIC
HEALTH SURVEILLANCE SYSTEMS.
ANY TRACKING AND SURVEYS AND
CAPTURING DATA ACROSS THE LIFE
SPAN.
THE LINK IS PROVIDED AND THE
NATIONAL COUNCIL ON DISABILITY
PUBLISHED A REPORT ON MEDICAID
HEALTH COVERAGE ON ADULTS WITH
MENTALITY DISABILITIES AND YOU
MAY WANT TO CHECK OUT THAT
REPORT.
AN UPDATE ON THE RAISED FAMILY
ADVISORY COUNCIL MANAGE THE ACL
IS THEY RECENTLY HELD AN OPEN
CALL FOR NOMINATIONS FOR THIS
COUNCIL THAT JUST CLOSED THIS
PAST MONDAY APRIL 11 AND THEY'RE
GOING TO BE ADDING UP TO 15
NON-FEDERAL VOTING MEMBERS
INCLUDING FAMILY CAREGIVERS,
OLDER ADULTS WHO NEED LONG-TERM
SERVICES AND SUPPORTS,
INDIVIDUALS WITH DISABILITIES,
HEALTH CARE AND SOCIAL SERVICE
PROVIDERS, PROVIDERS OF
LONG-TERM SERVICES AND SUPPORTS
AND EMPLOYERS AND PROFESSIONAL
WORKERS AND VETERANS AND OTHER
KINDS OF EXPERTS.
YOU CAN BE WATCHING FOR AN
ANNOUNCEMENT IN THE FUTURE ABOUT
WHO WILL BE JOINING THE
IMPORTANT COUNCIL.
ALSO I HAVE UPDATES FROM THIS
COMMITTEE AND THEY WILL MEET
APRIL 13 WHICH IS TODAY SO THEY
MAY BE MEETING RIGHT NOW AND THE
FULL AGENDA FOR THE MEETING IS
PROVIDED ON THE LINK AND ON OUR
WEBSITE AS WELL.
THE AGENDA INCLUDES A
PRESENTATION ON HOW STATE COURTS
ADDRESS MENTAL ILLNESS AND
SEVERAL WORK GROUP REPORTS FROM
VARIOUS WORKING GROUPS THEY HAVE
IN THE ISMC.
AND LASTLY, I WANTED TO SHARE AN
UPDATE FROM THE DISABILITY
ADVISORY COMMITTEE OF THE
FEDERAL COMMUNICATIONS
COMMISSION.
THEY'RE CURRENTLY SEEKING PUBLIC
FEEDBACK ON THE 21st CENTURY
COMMUNICATION AND ACCESSIBILITY
REPORT AND PREPARING A BIENNIAL
REPORT DUE IN OCTOBER.
THEY'RE ASKING FOR COMMENTS ON A
NUMBER OF TOPICS.
I PROVIDED A FEW INCLUDING
COMPLIANCE FOR
TELECOMMUNICATIONS AND ADVANCED
COMMUNICATION SERVICE OR ACS,
EQUIPMENT USED FOR THE SERVICES
AND INTERNET BROWSERS BUILT INTO
MOBILE PHONES AND TO BE
ACCESSIBLE AND USABLE FOR PEOPLE
WITH DISABILITIES AND LOOKING
FOR INFORMATION ON BARRIERS TO
ACCESS TO NEW COMMUNICATIONS
TECHNOLOGY FOR PEOPLE WITH
DISABILITIES.
IF YOU'RE INCLINED TO PROVIDE
FEEDBACK, FEEL FREE TO ACCESS
THAT LINK.
THAT CONCLUDES MY REPORT AND IF
THERE ARE ANY QUESTIONS, I'M
HAPPY TO ANSWER THEM OR WE CAN
MOVE TO THE NEXT SECTION.
SCOTT.
>> THANKS, SUSAN FOR SHARING
THAT.
THE OFFICE OF ASSISTANT
SECRETARY FOR PREPAREDNESS AND
RESPONSE RECENTLY LAUNCHED AN
ADVISORY COMMITTEE ON
INDIVIDUALS ON DISABILITIES AND
DISASTERS.
IT MET JOINTLY LAST MONTH WITH
THE COMMITTEE FOCUSSED ON THE
CONTEXT FOR SENIORS.
THEY MET TOGETHER AND I ASSUME
THAT THE COMMITTEE FOR
INDIVIDUALS WITH DISABILITIES
WILL BE MEETING SEPARATELY IN
THE COMING MONTHS.
THAT MIGHT BE OF INTEREST SINCE
NOT ONLY DOES THAT FOCUS BROADLY
ON DISASTERS BUT ALSO THAT'S
INCLUSIVE TO MEDICAL AND
HEALTH-RELATED ONES SUCH AS WHAT
WE HAVE NOW WITH COVID-19 AND
PREPARATION FOR FUTURE POTENTIAL
PUBLIC HEALTH EMERGENCIES
INCLUDING IF THERE ARE OTHER
EPIDEMICS OR PANDEMIC S THAT
COULD OCCUR IN YEARS TO COME.
I THINK IT'S IMPORTANT FOR
ACCESSIBILITY FOR FOLKS WITH
DEVELOPMENTAL DISABILITIES
INCLUDING AUTISTIC PEOPLE.
>> THANK YOU FOR SHARING THAT
UPDATE AND WE'LL INCLUDE IT IN
OUR LIST FOR NEXT TIME.
THANK YOU FOR HIGHLIGHTING THAT.
IF ANYONE ON THE COMMITTEE IS ON
ANOTHER DISABILITY COMMITTEE I
DOESN'T HIGHLIGHT AND YOU WANT
TO SHARE A HIGHLIGHT FEEL FREE
TO JOIN.
>> I'LL GET YOU THE URLs.
>> I'D APPRECIATE THAT.
ANYONE ELSE?
WELL, THANK YOU.
ALL THE LINK ARE HERE AND WE
HAVE THINGS ON OUR WEBSITE TOO,
BUT IF YOU HAVE QUESTIONS, FEEL
FREE TO SEND US AN E-MAIL.
WE'LL MOVE TO THE NEXT SECTION.
IACC COMMITTEE BUSINESS.
I'LL KICK THIS OFF.
FOR COMMITTEE BUSINESS TODAY I
HAVE A FEW DIFFERENT ISSUES TO
DISCUSS.
ONE IS AUTISM AWARENESS MONTH TO
GIVE YOU MORE DETAIL.
SOME UPCOMING MEETINGS OF THE
IACC.
A STRATEGIC PLAN DISCUSSION AND
THEN WE'LL BE TALKING ABOUT THE
IACC SUMMARY OF ADVANCES.
SO AS YOU ALL KNOW, APRIL IS
AUTISM AWARENESS MONTH.
I'D LIKE TO INVITE EVERYONE TO
JOIN US ON APRIL 27, OR OAC AND
MINH HAVE ANIMATING THE FUTURE
FOR EXCEPTIONAL MINDS.
WE'LL BE HOSTING A WONDERFUL
ORGANIZATION CALLED EXCEPTIONAL
MINDS ON THE WEST COAST THAT
TRAINS YOUNG ADULTS AND THE
AUTISM SPECTRUM FOR CAREERS IN
ANIMATION, DIGITAL ARTS AND
ENTERTAINMENT.
THERE'LL BE SHARING SOME OF
THEIR ANIMATION THEY'LL ALSO
TALK ABOUT THEIR WORK AND WE'LL
BE DOING AN INTERVIEW.
WE'D LOVE TO HAVE YOU JOIN US
FOR THAT.
ALSO CHECK OUT OUR NEW APRIL
2022 ADDITION OF THE OARC
NEWSLETTER WE SENT YESTERDAY AND
POSTED ON OUR WEBSITE.
WE HAVE SEVERAL INTERESTING AND
IMPORTANT UPDATES FROM AROUND
THE COMMUNITY YOU MIGHT WANT TO
SEE.
IN ADDITION OUR OFFICE HAS AN
AUTISM AWARENESS MONTH PAGE WE
USED TO COLLECT INFORMATION FROM
ORGANIZATIONS HOSTING EVENTS
DURING THE MONTH WE'D WELCOME TO
YOU LOOK AT THAT AND CHECK OUT
WHAT'S GOING ON AROUND THE
COUNTRY AND EVEN INTERNATIONAL
EVENTS.
IN TERMS OF IACC MEETINGS I
WANTED EVERYONE TO KNOW, OUR
CURRENT PLANS ARE TO HAVE A
STRATEGIC PLAN WORK GROUP
MEETING VIRTUAL JULY 13 AND 14,
2022.
AND I'M SHARING SOME OF THESE
UPDATES BEFORE WE GET IN
DISCUSSION SO WE DON'T RUN OUT
OF TIME AT THE END.
ALSO, THE IACC FULL COMMITTEE
MEETING COMING UP NEXT IS GOING
TO BE OCTOBER 26 AND IT WILL BE
EITHER VIRTUAL OR HYBRID.
WE DON'T KNOW YET.
WE'LL KEEP YOU INFORMED OF THAT
CHECK THE WEBSITE FOR OTHER
UPDATES.
LET'S START WITH THE IACC
STRATEGIC PLAN DISCUSSION THAT
WE HAVE PLANNED FOR TODAY.
THIS IS THE DISCUSSION OF OUR
TIME LINE AND PROCESS.
SO I WANTED TO SHARE WITH YOU
THAT THE TIME LINE SO FAR ON THE
STRATEGIC PLAN IS THAT IN
OCTOBER THROUGH NOVEMBER OF
2021, OUR OFFICE COLLECTED
FEEDBACK ON THE STRATEGIC PLAN
FROM THE GENERAL PUBLIC THROUGH
A REQUEST FOR INFORMATION AND WE
PRESENTED THESE RESULTS AT THE
JANUARY IACC MEETING AND
DISCUSSED THEM THERE.
AND IN JANUARY 2022, MEMBER WERE
ABLE TO DISCUSS ASPECTS IN OUR
DISCUSSION AND DECIDED TO
ADDRESS THE IMPACT OF COVID-19
AND MEMBERS WANTED THAT FORWARD
FACING AND WE WOULD AND ADDRESS
DISPARITY AND EXTEND THE TIME
LINE FOR FIVE YEARS AND FROM
NOVEMBER 2021 TO MARCH 2022 OUR
OFFICE ALSO HAD A SURVEY THAT WE
SENT OUT TO IACC TO COLLECT
FEEDBACK ON WHAT YOU WANT TO SEE
IN THE NEXT STRATEGIC PLAN AND
I'M GOING TO WALK YOU THROUGH
THAT AND WHAT HAPPENS AFTER THE
MEETING IS IN APRIL THROUGH
JUNE, OARC STAFF WILL TAKE THE
INPUT RECEIVED AND PREPARE A
DRAFT OF AN UPDATED STRATEGIC
PLAN INCORPORATING YOUR FEEDBACK
AND THE FEEDBACK OF THE
COMMUNITY AND OUR PLAN IS TO
SHARE THAT IN JULY.
IN MAY, WE PLAN TO ASK YOU FOR
FEEDBACK ON THE MISSION AND
VALUE STATEMENTS TO SEE IF YOU
HAVE ANY UPDATES FOR THOSE AS
WELL SO BE WATCHING FOR THAT.
OUR PLAN IS TO SEND OUT THE
FIRST DRAFT OF THE STRATEGIC
PLAN TO IACC MEMBERS IN EARLY
JULY PRIOR TO THE JULY 13, 14
MEETING.
THAT WILL BE.
TO ALL IACC MEMBERS.
DON'T HAVE TO HAVE A SPECIFIC
MEMBERSHIP ON THE WORKING GROUP.
WE KNOW SOME PEOPLE MAY BE ON
VACATION BECAUSE IT'S IN THE
SUMMER BUT WE ALSO WILL HAVE A
SURVEY MONKEY SURVEY YOU CAN USE
TO FILL OUT ANY FEEDBACK YOU
WANT TO SHARE AND ASKING FOR
GLOBAL FEEDBACK BECAUSE DOING SO
MANY LINE ITEMS IS NOT EFFECTIVE
SO WE'LL GIVE YOU AN OPPORTUNITY
FOR GLOBAL COMMENTS WE'LL TRY TO
INCORPORATE IN THE DRAFT.
AND DURING JULY THROUGH
SEPTEMBER OUR TEAM WILL BE
REVISING THAT DRAFT BASED ON
FEEDBACK WE HEARD AND IN OCTOBER
WE'LL BE MEETING AGAIN WITH THE
GOAL OF APPROVING A DRAFT OF THE
STRATEGIC PLAN AND WE HOPE WE
CAN GET IT INTO SHAPE WHERE IT
WOULD BE ABLE TO BE APPROVED.
IF NOT WE WOULD HAVE A PLAN B TO
CONTINUE DISCUSSIONS UNTIL WE
CAN GET IT APPROVED BUT I KNOW
THE WHOLE COMMITTEE OF COURSE IS
ALSO EAGER TO PUT TOGETHER
STRATEGIC PLAN BECAUSE ONCE IT'S
IN THE HANDS OF FEDERAL AGENCIES
ITS CAN BE USED.
WE DO WANT TO TRY TO MOVE THAT
PROCESS ALONG BUT WE WANT TO BE
SURE TO INCORPORATE ALL THE
FEEDBACK WE HEAR.
IN NOVEMBER TO DECEMBER 2022 IF
THINGS GO SUCCESSFULLY WE'LL
HAVE THE APPROVED DRAFT
PUBLICATION.
THAT'S THE TIME LINE AS WE SEE
IT NOW BUT WILL CONTINUE TO GIVE
UPDATES IF THAT CHANGES.
NOW WE HAVE TIME TO TALK ABOUT
FEEDBACK IN THE SURVEY MONKEY
SURVEY WE SENT TO MEMBERS.
WHAT I'D LIKE TO DO IS TALK
THROUGH ALL THE FEEDBACK ONCE
THROUGH AND THEN AT THE END WE
CAN GO BACK AND TALK ABOUT EACH
QUESTIONNAIRE SEPARATELY AND GET
YOUR COMMENTS BUT I WANT YOU TO
SEE THE FULL PICTURE BEFORE WE
START THE DISCUSSION.
SO ONE OF THE FIRST QUESTIONS
THAT WAS IN THE SURVEY WAS ON
THE TITLE OF THE STRATEGIC PLAN
AND WE ASKED THE COMMITTEE WHAT
YOU'D LIKE TO SEE US USE AS THE
TITLE.
THE CURRENT TITLE IS THE IACC
STRATEGIC PLAN FOR AUTISM
SPECTRUM DISORDER.
IN THE OLD, OLDER DAYS IT WAS
CALLED THE IACC STRATEGIC PLAN
FOR AUTISM SPECTRUM DISORDER
RESEARCH BUT THE CARES ACT
CHANGED IT AND REQUIRED IT TO
ADDRESS ISSUES RELATED TO
SERVICES AND SUPPORTS AS WELL AS
RESEARCH AND BY EXTENSION POLICY
AND SO IT'S A BROADER STRATEGIC
PLAN NOW.
SO THE LAST NAME WAS THE MIDDLE
ON THE SLIDE.
WE PROPOSED A COUPLE IDEAS, THE
TITLE BEFORE OR THE IACC
STRATEGIC PLAN FOR AUTISM
SPECTRUM STRATEGIC PLAN AND
POLICY AND LEFT IT BLANK IN CASE
SOMEONE WANTED AN ALTERNATIVE.
WE HAD 28 VOTES TOWARD THE IACC
STRATEGIC PLAN FOR AUTISM
RESEARCH SERVICES AND POLICY AND
A FEW VOTES FOR SOME OF THE
OTHERS SO IT LOOKS LIKE THE
MAJORITY OF THE COMMITTEE WANTS
TO GO AHEAD AND CHANGE THE NAME
TO MAKE IT MORE CLEAR ABOUT THE
SCOPE OF THIS STRATEGIC PLAN.
SOME OF THE GENERAL OVERVIEW
FROM THE FEEDBACK AND FOR ANYONE
WATCHING ONLINE IF YOU WANT TO
SEE A SUMMARY OF THE THEMES THAT
DOCUMENT IS ONLINE AS WELL AS
THE FULL TEXT OF THE INFORMATION
WE RECEIVED.
SO THE GENERAL COMMENTS WE
RECEIVED INCLUDED AN INCREASED
NEED FOR INCLUSION IN RESEARCH
AS WELL AS INCLUDING
COMMUNITY-BASED PARTICIPATORY
RESEARCH.
ADDRESSING DISPARITIES,
ADDRESSING THE ENTIRE SPECTRUM
AND THE ENTIRE LIFE SPAN,
EMPHASIZING ACTIONS AND
SOLUTIONS WHERE POSSIBLE,
EMPHASIZING COMMITMENT TO EQUITY
AND ELIMINATION OF STIGMA AND
DISCRIMINATION AND THERE WERE
SOME COMMENTS ON LANGUAGE
CONSIDERATIONS WHICH WE
SUMMARIZED AS MOVING AWAY FROM
DEFICITS-BASED LANGUAGE AND TO
MORE INCLUSIVE LANGUAGE AND
BALANCING THE IMPORTANCE OF MAIN
ACCURACY WHEN REFERRING TO
ISSUES THAT MAY BE SCIENTIFIC,
MEDICAL OR CLINICAL IN NATURE.
TO SHARE THEMES FROM DIAGNOSIS,
BIOMARKERS, UNIVERSAL SCREENING
AND ACCESSIBILITY OF SERVICES,
DISPARITIES, DETECTION AND
INTERVENTIONS AND TELEAHEALTH
HEALTH APPROACHES AND MILESTONE
TRACKING AND PRACTICE, MEDICAL
PRACTITIONER TRAINING, CAREGIVER
ENGAGEMENT AND SYSTEMS
NAVIGATION.
IN QUESTION 2 FOCUS ON THE
BIOLOGY OF AUTISM, THE THEMES
THAT WE WERE ABLE TO PULL OUT
WERE BIOLOGY ACROSS THE LIFE
SPAN, CO-OCCURRING CONDITIONS,
COGS MISSION AND BEHAVIOR, SEX
DIFFERENCES INCLUDING THE FEMALE
PROTECTIVE EFFECT, HUMAN NEURO
IMAGING STUDIES, LONGITUDINAL
STUDIES, TRANSLATIONAL STUDIES,
THE MICROBIOME AND THE ETHICS OF
HUMAN STUDIES.
OWN QUESTION 3 ON GENETIC AND
ENVIRONMENTAL FACTORS SOME
THEMES WERE FACTS ON EPIGENETIC
AND ENVIRONMENTAL FACTORS, LARGE
GENETIC AND EPIGENETIC STUDIES,
INCLUSION OF DIVERSE POPULATIONS
IN GENETIC STUDIES, DEEP ARE
UNDERSTANDING OF GENETIC
VARIANCE, COMMON FACTORS THAT
IMPACT AUTISM AND CO-OCCURRING
CONDITIONS AND MODIFIABLE
ENVIRONMENTAL FACTORS INCLUDING
MATERNAL DIET, INFLUENCE OF
GENETIC FACTORS ON RESPONSE TO
MEDICATIONS AND INTERVENTIONS.
ON THEMES THAT WERE PULLED FROM
QUESTION 4 ON INTERVENTIONS, WE
SAW THAT THERE WAS INTEREST IN
MEDICAL, BEHAVIORAL AND
EDUCATIONAL AND COMPLIMENTARY
APPROACHES.
INTERVENTIONS THAT FOCUS ON I AM
PROVING THE QUALITY OF LIFE,
PERSONALIZED AND CULTURALLY
COMPETENT INTERVENTIONS,
NATURALISTIC DEVELOPMENTAL
BEHAVIORAL INTERVENTIONS,
PREEMPTIVE INTERVENTION FOR
CHALLENGING BEHAVIORS, PARENTS
AND CAREGIVER MEDIATED
INTERVENTIONS, COMMUNICATION
TOOLS, ALTERNATIVE AND AUGMENTED
COMMUNICATION, AAC, OUTCOME
MEASURES AND BIOMARKERS,
COMMUNITY ACCESS TO INFORMATION
ABOUT SAFETY AND EFFICACY OF
APPROACHES, TELEHEALTH
APPROACHES AND TECHNOLOGY-BASED
INTERVENTIONS.
ON QUESTION 5 THE THEMES WERE
SCALING AND IMPLEMENTING
INTERVENTIONS, HEALTH SYSTEM
INTEGRATION, COMMUNITY-BASED
SERVICE DELIVERY, IDENTIFYING
AND REDUCING DISPARITIES, FAMILY
DYNAMICS SUPPORT AND ENGAGEMENT,
ALSO PARENTS AND SIBLING
PERSPECTIVES, SERVICES WORKFORCE
TRAINING AND DEVELOPMENT,
PERSON-CENTERED SERVICES,
SYSTEMS NAVIGATION, MEDICARE,
MEDICAID AND SOCIAL SERVICE
POLICY.
ON QUESTION 6 ON LIFE SPAN, SOME
THEMES WERE ADULT DIAGNOSIS,
TRANSITION AGED YOUTH AND YOUNG
OUTCOMES.
EMPLOYMENT, HOUSING, SAFETY,
FAMILY DYNAMICS AND TRAUMA,
COMMUNITY INCLUSION, AGING
AUTISTIC ADULTS AND HOW ISSUES I
JUST LISTED ACT AS SOCIAL
DETERMINATES OF HEALTH.
ON QUESTION 7 AND IT SOUNDS LIKE
THERE'S CONFUSION ABOUT
SURVEILLANCE.
WE'RE NOT TALKING ABOUT
SURVEILLING PEOPLE IN THEIR
HOMES OR ANYTHING LIKE THAT.
THAT'S EPIDEMIOLOGY AND LOOKING
AT PREVALENCE.
SYSTEMS THAT TRACK AUTISM
PREVALENCE, PUBLIC-PRIVATE
PARTNERSHIPS, DATA BANKS AND BIO
BANKS, PRIVATE GUIDELINES, ADULT
PREVALENCE STUDIES, COMMUNITY
OUTREACH AND DISSEMINATION OF
INFORMATION, RESEARCH AND CLINIC
RESOURCE DEVELOPMENT AND SUPPORT
FOR EARLY CAREER RESEARCHERS.
THERE WERE TWO SPECIAL TOPICS WE
ASKED ABOUT WHICH WERE COVID-19
AND DISPARITY.
SO ON COVID-19, THE FEEDBACK WE
RECEIVED WAS THAT YOU'D LIKE TO
SEE A SECTION ON COVID-19 COVER
HOW WE'RE GOING TO MITIGATE
INCREASED RISK OF COVID-19 IN
AUTISTIC INDIVIDUALS, WHAT THE
IMPACT HAS BEEN OF DISRUPTIONS
IN SCHOOL, ACCESS TO
INTERVENTIONS AND SERVICES,
MENTAL HEALTH SUPPORTS, THE
IMPACT OF SWITCHING TO REMOTE
SCHOOL WORK HEALTH CARE AND
SERVICES AND THE IMPACT OF THE
PANDEMIC ON THE AUTISM RESEARCH
COMMUNITY.
THE LAST TOPIC DISCUSSED WAS
DISPARITIES AND SOME FEEDBACK
WAS YOU'D LIKE TO SEE A FOCUS ON
REDUCING DISPARITIES IN
DIAGNOSIS AND ACCESS TO SERVICES
AND SUPPORTS INCLUDING THE
CATEGORIES OF RACE AND
ETHNICITY, GENDER ORIENTATION
AND IDENTITY AND SOCIO ECONOMIC
STATUS AND GEOGRAPHIC LOCATION
AND WOULD LIKE TO SEE INCREASED
INCLUSION AND ENGAGEMENT WITH
UNDER SERVED COMMUNITIES,
INCREASING DIVERSITY IN RESEARCH
AND CLINICAL WORKFORCE AND ALSO
INCREASING CULTURAL COMPETENCY
OF EDUCATORS, MEDICAL
PRACTITIONERS AND OTHER SERVICE
PROVIDERS.
SO I WILL STOP THERE AND GO BACK
TO WHERE WE STARTED AND LET YOU
ALL HAVE TIME TO DISCUSS WHAT
WAS SHARED.
DOES ANYONE HAVE COMMENTS AND
HOPEFULLY YOU CAN BRING THINGS
UP.
>> I SAW A COUPLE THINGS I THINK
THAT ARE PAINFULLY MISSING AND
HOPE WE CAN ADDRESS THIS.
ONE IS TRAUMA-INFORMED CARE.
WE NEED MORE.
I WOULD SUGGEST SOMETHING
RELATED TO PAY FOR SUPPORT
PERSONS IN TERMS OF POLICY I
WOULD ALSO SUGGEST IN TERMS OF
COMMUNITY-BASED SERVICES WE
ACKNOWLEDGE OR RECOGNIZE THERE
ARE VERY FEW AUTISTIC ADULTS WHO
DO NOT REQUIRE SOME LEVEL OF
SUPPORT BUT THAT COULD BE
MONETIZED AND INDIVIDUALIZED
BASED ON INDIVIDUAL NEEDS AND
LASTLY THE OTHER NOTE I TOOK
THAT I THINK IS A TOPIC WE WANT
TO DISCUSS IS THE INTENSE
EFFORTS AND DESIRE TO LOOK AT
GENDER AS A BINARY PROBLEM FORE
FORE -- FOR STUDY IN RESEARCH.
MY CONCERN IS AS A SOCIAL WORKER
IN THE FIELD IS WE'RE FINDING
AUTISTIC MALES WHO PRESENT LESS
EXTERNALLY WHO PRESENT MORE
UNDER WHAT WE CALL THE FEMALE
PHENOTYPE ARE LACKING THE SAME
SUPPORTS AND SERVICES AS WE
PROJECTED FEMALES EXPERIENCE.
WHEN WE LOOK AT GENDER WE HAVE
NOT YET EXAMINED THE RESEARCH IN
THIS SUBSET OF AUTISTIC MALES IS
AND I'M CONCERNED PROJECTING
THIS IS EXCLUSIVELY A MALE OR
FEMALE CHALLENGE IS GOING TO
MARGINALIZE YET ANOTHER SUBGROUP
OF AUTISTIC PEOPLE.
I THINK WHEN WE TALK ABOUT
GENDER, MAYBE WE TO FOCUS MORE
ON THE PRESENTATION OF
INTERNALIZED VERSUS
EXTERNALALIZED IN LIEU OF FEMALE
AND MALE EXCLUSIVELY AND LEAVES
LITTLE ROOM FOR GENDER
NON-CONFORMING AND OTHER GENDER
MINORITY.
OVERALL, I THINK WE COVERED JUST
ABOUT EVERYTHING AND MAYBE I CAN
HELP COLLABORATE SOMETHING FOR
THE COMMITTEE IF WE WANT TO WORK
ON THAT.
>> THANK YOU FOR SHARING THE
COMMENTS.
BY THE WAY, WE ARE TAKING NOTES
AND WANTING TO COLLECT
ADDITIONAL FEEDBACK DURING THE
SESSION.
WE'RE TAKING NOTE OF WHAT YOU'RE
TELLING US AND IF THERE ARE
SPECIFIC RESOURCES YOU WANT US
TO HAVE FEEL FREE TO SEND THOSE
TO US.
>> I WANT TO BACK UP WHAT DENA
IS SAYING.
I WANT TO BACK UP WHAT SHE'S
SAYING AND -- SORRY, MY CAMERA
WON'T TURN ON.
SOMETIMES IT'S PRESUMPTIVE STILL
TO ASSUME THAT DISPARITIES IN
DIAGNOSED ARE CALLED BY SOME OF
THESE ISSUES AND PRACTITIONERS
AND PARENTS VIEW AND INTERPRET
TRAITS AND BEHAVIORS.
THERE ARE PEOPLE WHO WOULD HAVE
CLEARLY MET THE DSM CRITERIA FOR
DIAGNOSIS WHO HAD ALL THE
STEREOTYPICAL BEHAVIOR BUT WAS
NOT RECOGNIZED OF AUTISM BECAUSE
PUBLIC PERCEPTION THAT AUTISM
SOMETHING YOU SEE IN BOYS.
IT WOULD BE WORTH BEING MORE
OPEN DEFINING THE SCOPE OF
RESEARCH ON GENDER DIFFERENCES
SO WE INCLUDE THE POSSIBILITY OF
DIFFERENCES BASED IN OTHER
PEOPLE'S PERCEPTIONS IN
DIFFERENT WAYS PEOPLE ARE
SOCIALIZED AND NON-BIOLOGICAL
DIFFERENCES AS WELL.
>> THANK YOU, SAM.
LIKEWISE IF YOU HAVE ANY
RESOURCES ON THAT, FEEL FREE TO
SEND THEM.
JOSH.
YOU'RE ON MUTE.
>> I APPRECIATE YOU POINTING
THIS OUT FROM A GENDER AREAS AND
OTHER AREAS AND IT'S IMPORTANT
WE RECOGNIZE IN THE STRATEGIC
PLAN WHERE WE'RE ASKING FOR
QUESTIONS TO BE ANSWERED LIKE
THE ISSUE OF GENDER DISPARITIES
AND ALSO NEEDING TO CONSIDER
MORE THAN JUST THE BINARY ISSUE
OF GENDER.
IT'S AN ISSUE BEING WRESTLED
WITH THROUGH BIOMEDICAL
RESEARCH.
I'LL POINT OUT A FEW ARTICLES IN
THE SUMMARY AS ADVANCES
DISCUSSION THAT DEAL WITH ISSUES
OF GENDER DISPARITY.
SO MAKING SURE THAT WE RECOGNIZE
WHAT WE'RE LEARNING AND ARE
LEARNING AS THE TWO PREVIOUS
SPEAKERS DISCUSSED WILL BE
IMPORTANT TO THE STRATEGIC PLAN.
I HAVE A QUESTION FOR DENA AND
MAYBE ALSO FOR OTHERS
PARTICULARLY SOME SCIENTISTS ON
THE CALL WHO HAVE DONE THE
TREATMENT RESEARCH OF WHAT IS
MEANT BY TRAUMA INFORMED CARE IN
THIS PARTICULAR CASE.
IT'S A REALLY IMPORTANT
PERSPECTIVE IN TERMS OF MAKING
SURE THAT CARE IS INFORMED BY
THE FACT THAT MANY PEOPLE AND
MANY AUTISTIC INDIVIDUALS HAVE
UNDER GONE TRAUMA BUT IN MANY
CASES IT DOESN'T OFTEN MEAN AN
EVIDENCE-BASED APPROACH WHEREAS
SOMETHING MORE SPECIFIC MIGHT BE
SOMETHING BETTER.
MY QUESTION FOR YOU, DENA IS
WHETHER IT'S APPROPRIATE WAYS TO
DELIVER TRAUMA MANY OF BASED
CARE OR WHETHER YOU'RE AWARE OF
STUDIES THAT DEMONSTRATE THOSE
APPROPRIATE PROCEDURES TO DO SO
AND WE'LL BE RECOMMENDING THOSE.
THERE MAY BE OTHERS THAT WANT TO
RESPOND TO THAT QUESTION AS
WELL.
>> MY SUGGESTION IN TERMS OF THE
RESEARCH IS WE GO A STEP BEFORE
THAT WHICH IS THE REALITY THAT
IN MUCH OF THE TRAUMA LITERATURE
WE'RE CONTINUING TO REJECT THE
IDEA OF THE LOWER-TRADE TRAUMA
OF CONSTANT PROOF OF WORTHINESS
FOR SERVICES AND SOCIAL
ISOLATION, CUMULATIVELY MEET THE
SAME FOR TRAUMA AS A BIG "T"
TRAUMA FOR WELFARE.
I DON'T THINK WE HAVE THE
FOUNDATIONAL INFORMATION.
THERE'S VERY FEW STUDIES, I'LL
PULL OUT WHAT I HAVE THAT LOOK
AT HOW AUTISTIC PEOPLE
EXPERIENCE TRAUMA.
WE CAN'T BUILD TRAUMA INFORMED
INTERVENTIONS IF WE DON'T
EMBRACE THAT.
>> THAT'S A HELPFUL
CLARIFICATION.
I'LL POINT OUT THOSE STUDIES ARE
HAPPENING IN OTHER AREAS.
A NUMBER OF STUDIES ARE COMING
OUT NOW ABOUT THE CUMULATIVE
AFFECT OF MICROAGGRESSIONS AND
OTHER LESS CHRONIC OR LESS
SEVERE -- MORE CHRONIC BUT LESS
SEVERE FORMS OF TRAUMA WITH
REGARD TO RACE AND ETHNICITY.
BUILDING ON THOSE METHODS THAT
HAVE BEEN USED TO EXPLORE THE
RELATIONSHIP BETWEEN AS YOU
POINT OUT THE AFFECTS.
>> I THINK WE EXPERIENCE A FORM
OF PTSD UNIQUE IN THAT FOR ME
IT'S AIRPORTS.
I'VE HAD SO MANY DENIALS OF
ACCOMMODATION SUPPORTS IN
AIRPORTS THAT EVEN THOUGH I HAVE
PAID FOR CLEAR AND HAVE TSA
PRE-CHECK I HAVE A PTSD REPORT
AND I'M NOT SURE THE
LOW-GRADE -- I HATE TO CALL IT
THAT BECAUSE IT'S AN INTENSE
EXPERIENCE BUT THE KIND OF
CUMULATIVE MICROAGGRESSION AND
VOON A WORD -- EVEN A WORD AND
HOW IT'S PROCESSED THROUGH THE
LENS OF AN AUTISM EXPERIENCE
BEFORE WE CAN LOOK AT
INVENTIONS.
THERE'S WORK BE DONE.
>> THIS IS SAM.
IN ADDITION TO RESEARCHING
SPECIFIC TRAUMA-INFORMED
INTERVENTIONS, WE ALSO NEED TO
MAKE SURE THAT MENTAL HEALTH
MEASURES ARE INCLUDED IN THE
ADVOCACY MEASUREMENTS OF
INTERVENTIONS WE'RE ALREADY
DOING RESEARCH ON BECAUSE WE
HAVE A LOT OF PEOPLE WHO SAY
THAT THE TREATMENT ITSELF HAS
CAUSED TRAUMA BUT WE DON'T HAVE
ANY DATA ON THAT BECAUSE WHEN
THE ADVOCACY MEASURES ARE
DECIDED ON AND PEOPLE DECIDE
WHAT TO MEASURE WHEN RESEARCHING
THE ADVOCACY OF AN INTERVENTION,
MENTAL HEALTH AND TRAUMA AREN'T
INCLUDED IN THAT LIST SO WE NEED
TO MAKE SURE THAT IT'S
INCORPORATED INTO A LOT OF
RESEARCH THAT'S ALREADY BEING
DONE.
>> I WONDER IF ANY OF THE
SCIENTISTS ON THE COMMITTEE
DOING THIS KIND OF RESEARCH MAY
WANT TO COMMENT IN RESPONSE TO
THAT QUERY.
I WANT TO INCLUDE THEM IN THE
DISCUSSION.
I DON'T WANT TO PUT ANYONE ON
THE SPOT.
>> JULIE.
>> THERE'S MOVEMENT AND
PUBLICATIONS IN THE LAST YEAR OR
TWO AND THINKING THROUGH
UNINTENDED CONSEQUENCES OF
INTERVENTIONS AND SORT OF
UNINTENTIONAL HARMS AND NOTING
THAT'S REALLY MEASURED IN REALLY
CONSIDERED AND REALLY CALLING ON
THE FIELD TO THINK ABOUT THESE
THINGS MORE CAREFULLY AS THEY'RE
DOING INTERVENTION WORK.
I'VE HEARD OVER THE LAST COUPLE
YEARS A LOT MORE DISCUSSION THAN
I HAVE PREVIOUSLY AMONG THE
SCIENTIFIC COMMUNITY ABOUT THE
IMPORTANCE OF THINKING
HOLISTICALLY ABOUT THE IMPACT
THAT INTERVENTION IS HAVING NOT
JUST IN TERMS OF YOUR PRIMARY
OUTCOMES YOU HAVE TO SPECIFY AT
THE START OF THE STUDY TO SAY IS
THE THING I WOULD BE IMPACTED BY
THIS INTERVENTION AND THINK
WE'RE, PUSHED MORE IN THAT
DIRECTION TO BE SPECIFIC AND
CAREFUL ABOUT MEASURING THE
OUTCOME INSTEAD OF MEASURING A
MILLION THINGS AND SAYING IT'S
RANDOM OUTCOME NUMBER 22 SEEMS
TO HAVE AN AFFECT BUT TO BE
THINKING CAREFULLY AND BROADLY
ABOUT MEASURING HARMS IN
ADDITION TO POTENTIAL BENEFITS
OF INTERVENTIONS.
I'VE HEARD A NUMBER OF
CONVERSATIONS OVER THE LAST YEAR
AND FEW TO NONE BEFORE THAT.
I THINK THINGS ARE MOVING IN
THAT DIRECTION.
>> AWESOME.
>> JULIE, IS THERE A SPECIFIC
INITIATIVE YOU ALL HAVE GOING ON
AT VANDERBILT YOU MAY WANT TO
MENTION AROUND THIS?
>> SUSAN, I'LL TRACK DOWN THE
ARTICLES I'M THINKING OF AND I
WISH SOMEBODY COULD STEP IN.
I THINK ONE OF THE AUTHORS THAT
WAS LEADING EIGHT OF THIS WORK
AND EARLY CAREER WORK.
I CAN'T BELIEVE I'M BLANKING ON
THIS.
I'LL BE EMBARRASSED IF THEY'RE
LISTENING TO THIS DISCUSS.
>> I'M ACTUALLY NOT SURE WHO
YOU'RE REFERRING TO BUT SOME OF
MY COLLEAGUES WAS A LEAD AUTHOR.
THERE'S A DIFFERENT SET OF
PAPERS BUT WE TRIED TO WRITE A
PAPER LOOKING AT A FRAMEWORK FOR
LOOKING AT HARMS AN BENEFITS AND
SCREENINGS.
AND I THINK THESE POINTS ARE
REALLY IMPORTANT BOTH HARMS AND
BENEFITS AND ALSO ABOUT MENTAL
HEALTH BECAUSE I THINK FOR THE
FIRST ONE IN TERMS OF HARMS AND
BENEFITS I THINK PEOPLE HAVE
BEEN VERY BUSY PROMOTING
SCREENING, PROMOTING CERTAIN
INTERVENTIONS AND REALLY NOT
WANTING TO MENTION THE
POSSIBILITY THERE COULD BE HARMS
BECAUSE THEY STILL WANT TO GET
THE INTERVENTIONS OUT IN THE
COMMUNITY.
AND I THINK THAT'S PROBLEMATIC
BECAUSE WE NEED TO LOOK AT
UNINTENDED CONSEQUENCES AND
UNINTENDED BENEFITS.
I THINK ALSO IN TERMS OF MENTAL
HEALTH OUTCOMES GIVEN THE VERY
HIGH PREVALENCE OF A WIDE RANGE
OF CO-OCCURRING CHALLENGES, I
THINK IT BEHOOVES US TO START
INCLUDING EVEN IF WE CAN'T DO
FULL ON STRUCTURED DIAGNOSTIC
INTERVIEWS ON HEALTH CHANGES WE
HAVE A LOT OF SYMPTOM CHECKLIST
WOULD WELL AND WOULD NOT BE HARD
TO INCLUDE ALONG WITH OTHER
OUTCOMES.
>> I THINK IN OUR SUICIDE
PREVENTION, WE'RE GETTING GOOD
INFORMATION BUT I DON'T THINK
MUCH OF IT IS LOOKING AT THE
CARNICITY PIECE AND THE QUALITY
OF LIFE OVER AN EXTENDED PERIOD
OF A PERSON'S LIFE TIME IS
REALLY HAS NOT BEEN LOOKED AT, I
DON'T THINK.
THAT'S WHAT I'M CONCERNED WE'RE
MISSING.
I THINK THE PREVENTIVE SUICIDE
AND PREVENTIVE MENTAL HEALTH
PIECE IS GOOD BUT DOESN'T GO FAR
ENOUGH FOR ME.
>> AND PEOPLE HAVE BECOME
INTERESTED IN SEPARATE
LITERATURE FROM THE TRAUMA
LITERATURE AND THERE'S OLD
LITERATURE IN AUTISM ON HOW KIDS
ARE AT HIGHER RISK FOR ABUSE AND
ALL KINDS OF OTHER VERY
DIFFICULT SITUATIONS WITH PEERS
AND THERE'S GOOD REASON AN OLD
LITERATURE WOULD SUPPORT LOOKING
AT TRAUMA OR A POTENTIALLY
TRAUMATIC EVENT IS IMPORTANT
REALLY IMPORTANT AND WE ALSO
KNOW JUST FROM THE GENERAL
TRAUMA LITERATURE IT'S OFTEN THE
ACCUMULATION OF THE AEVENTS
RATHER THAN THE ONE-OFF THAT HAD
SIGNIFICANT MENTAL HEALTH
IMPACTS.
I THINK THREE DISPARATE BUT
INTERSECTING POINTS YOU ALL HAVE
JUST RAISED ARE SUPER IMPORTANT
LOOKING AT POTENTIALLY TRAUMATIC
EVENTS, ASSESSING MENTAL HEALTH
WHEN LOOKING AT INTERVENTIONS
THAT AREN'T SPECIFICALLY
FOCUSSED ON MENTAL HEALTH AND
THEN ALSO THINKING ABOUT HARMS
AND BENEFITS.
>> THANK YOU SO MUCH.
LET'S GO TO SCOTT.
>> LOOKING AT TRAUMA AND
ADVERSITY AND BURNOUT AND OTHER
FACETS WE'VE DESCRIBED OVER THE
YEARS IN TERMS OF THE SPOON
THEORY THAT HAVE NOT MADE THEIR
WAY TO RESEARCH LIKE WE NEED A
LOT OF MORE OF THIS FOCUS ON
TRAUMA AND SOLUTIONS AS WELL.
I THINK I MENTIONED AT PRIOR
MEETINGS THAT THE UNDER FOCUS IN
TERMS OF POSITIVE PSYCHOLOGY
TYPE ELEMENTS AS FAR AS THE
RESILIENCE COURAGE, TEN ACITY
GOES TO THE PSYCHOLOGICAL
ELEMENTS BUT IT'S SOMETHING WE
COULD HAVE A LOT OF OPPORTUNITY
AND SOLUTIONS ON THAT AS FAR AS
HOW TO AND BARRIERS AND THE
LACKS OF SERVICES FOLKS NEED TO
THRIVE AND HANDLE ADVERSITY AND
CHALLENGES AND BARRIERS AND
ESPECIALLY RIGHT NOW IN THE
EXCEPTIONAL CIRCUMSTANCES WITH
COVID-19 AND OTHER LIFE
COMPLEXITIES AND HEALTH AND
PHYSICAL AND MENTAL HEALTH
COMPLEXITIES A LOT OF FOLKS
EXPERIENCE ACROSS THE LIFE SPAN.
I WANT TO CONCUR WITH THE
TRAUMA-INFORMED APPROACHES AND
CARE AND ALSO RELATED TO GENDER,
I DON'T KNOW -- THERE WAS A
FEDERAL COMMITTEE AND THE FOCUS
AND I DON'T KNOW IF THAT'S
SOMETHING TO LOOK INTO AS FAR AS
WHAT PURSUITS THAT COMMITTEE HAS
HAD AND HOW CROSS-CONNECTED IT
IS TO DISABILITY.
>> THANK YOU.
I CAN LOOK INTO THAT.
>> I'M GOING TO GO TO JAYLIN
NEXT.
>> THIS IS PART OF WHAT I WAS
TRYING TO SEND IN AND I NOTICED
SOME OF THE POINTS WERE NOT
NECESSARILY ADDRESSED.
IN THE SUMMATION THERE'S SOME
EXCELLENT THINGS AND THE
COMMENTS MADE ARE WONDERFUL.
THERE'S THREE AREAS I WANT TO
TOUCH ON QUICKLY ABOUT SUPPORTS.
THERE IS A HUGE NEED FOR
SUPPORTS IN FAMILIES AND AND
THEY NEED PLACE TO TURN TO
NAVIGATE AND HELP WITH CHILDREN.
BY THE TIME THEY ARE CONTENDING
WITH LACK OF SLEEP, AGGRESSIONS,
DIETARY REQUIREMENTS AND OTHER
FAMILY MEMBERS, SOME OF WHICH
MAY ALSO HAVE SPECIAL NEEDS OF
THEIR OWN, IT'S VERY HARD FOR
FAMILIES TO NAVIGATE AND THERE'S
VERY FEW THINGS IN COMMUNITIES
WHERE SOMEONE CAN HAVE SOMEONE
COME IN OR WORK WITH THEM.
THERE'S SPORADIC THINGS OR IF
YOU'RE FORTUNATE ENOUGH TO GET
ON THE PHONE AND FIND A PLACE
YOU'RE A LUCKY PARENT.
THERE'S A LOT OF ANGST THERE.
WE ALSO NEED SUPPORTS FOR
INDIVIDUALS.
THEY CAN COME FROM GREATER
TRAINING FROM UNIVERSITIES AND
COMMUNITY.
I'M VERY MUCH IN FAVOR OF THINGS
THAT CAN BE DONE IN COMMUNITY.
I THINK COMMUNITY COLLEGES,
UNDERGRADUATE WORK AND
UNIVERSALS AND TRAINING MORE
PEOPLE NOT NECESSARILY MSWs AND
GOING ON TO Ph.D.s WHICH ARE SO
IMPORTANT, BUT PEOPLE THAT CAN
ENCOUNTER PEOPLE EVERY DAY AND
HELP INDIVIDUALS.
HELP THE INDIVIDUAL DEVELOP THE
ABILITIES THEY NEED TO REACH
GOALS THEY HAVE IN WORK OR
COMMUNITY.
IT'S SO HARD TO FIND SOMEBODY
THAT ISN'T JUST -- AND I DON'T
WANT TO SAY JUST -- CAREGIVERS
ARE SO IMPORTANT BUT GOING
BEYOND AND TEACHING AND
INSTRUCTING AND GUIDING PEOPLE
TO OTHER PLATEAUS.
AND I HAVE SEEN ADDRESSED THE
SAME TRACK MORE TRAINED PEOPLE
IN MEDICINE.
AND PHYSICIANS DON'T KNOW HOW TO
DEAL WITH SENSORY ISSUES AND I
HEAR FROM DOCTORS THAT DON'T
HAVE THE EXPERTISE AND THEY'RE
RELUCTANT TO GET THE EXPERTISE
AND WE'VE HAD SOMEBODY GOOD
WORKING WITH US DOING GRAND
ROUNDS AT GEORGETOWN AND OTHER
PLACES AND IT CAN BE DONE.
INFORMING GYNs HOW TO DEAL WITH
SENSORY ISSUES ESPECIALLY FOR
REGULAR VISITS AND ALSO IN CHILD
BIRTH FOR THOSE ON THE SPECTRUM
THAT BECOME PARENTS.
ARE THERE CERTAIN THINGS THAT
NEED TO BE TAKEN INTO
CONSIDERATION AND SEEMS OFTEN
THOSE THINGS ARE NOT.
IT GOES BACK TO THE COMMENTS
JUST BEING MADE AND THESE
INTERVENTIONS CAN HELP WITH THE
MENTAL WELL BEING OF A FAMILY
AND IF THE PARENTS AND FAMILY
ARE DOING WELL THERE'S A
LIKELIHOOD OF PUTTING THEM ON
THE SPECTRUM AS HOUSEHOLD AND I
PUT THESE DOWN AS SUPPORTS THAT
AREN'T USUALLY LOOKED AT AND
COULD BE FUNDED FEDERALLY BUT
ALSO BE THINGS THAT COULD BE
DEVELOPED WITHIN COMMUNITIES.
THANK YOU.
>> THANK YOU FOR SHARING THOSE
IMPORTANT POINTS.
WE NOTED THEM.
I THINK THEY DO CONNECT TO SOME
OF THE THINGS IN THERE NOW BUT
WE CERTAINLY CAN TRY TO BEEF
THOSE UP.
>> THANK YOU.
>> I'LL GO TO ALICE NEXT.
>> SORRY, I JUST DIDN'T TAKE MY
HAND DOWN.
>> DENA.
>> IN TERMS OF THE GENDER ISSUE
WE HAVE THIS 8 YEAR OLDS BEING
MEASURED FOR INCIDENCE RATES.
WE TALKED ABOUT THAT BEFORE BUT
WE NEED TO EVALUATE ADOLESCENT
AND ADULT RATES OF AUTISM IN
SOME OF OUR CENTERS SHOULD LOOK
AT GENDER AS WELL.
>> QUESTION, I KNOW CDC IS
WORKING ON SOME OF THOSE ISSUES
BUT WE CAN MENTION THE
IMPORTANCE OF THAT IN THE NEW
PLAN.
ARE THERE OTHER COMMENTS FROM
MEMBERS ON THE COMMITTEE OF
WHAT'S HERE OR WHAT'S MISSING OR
NEW THINGS THAT HAVE COME TO
MIND SINCE FILLING OUT THE
SURVEYS EARLIER?
I KNOW IT MAY BE DIFFICULT TO
THINK OF ON THE FLY.
WE HAVE YETTA.
>> THANK YOU FOR GIVING ME THE
FLOOR AGAIN.
ONE THING TO THINK ABOUT AS WE
DO THE STRATEGIC PLAN IS -- I
KNOW THERE'S A GROUP BUT I WANT
TO WORK TOWARDS INCLUDING
DIFFERENT GROUPS I THINK THIS IS
GOING TO BE KEY BECAUSE WE DON'T
NECESSARILY KNOW HOW CERTAIN
INTERVENTIONS CAN WORK OR WHAT
THE AFFECTS OR IN VARIOUS
COMMUNITIES IF 60% OF THE
RESEARCH HAS BEEN DONE AND I'M
LOOKING AT A SPECTRUM NEWS
ARTICLE THAT WAS RECENTLY
PUBLISHED WHERE THEY TALKED
ABOUT THE INTERVENTION STUDIES
AND AUTISM RESEARCH HOW
BASICALLY 60% OF THE
PARTICIPANTS IN THE AUTISM
RESEARCH STUDIES ARE WHITE.
SO HOW DO WE REALLY KNOW IF AN
INTERVENTION WORKS IN DIFFERENT
GROUPS IF WE DO NOT STUDY
DIFFERENT GROUPS?
I KNOW AS WE TALK ABOUT TRAUMA
SPECIFICALLY FOR ME IT'S SOMEONE
WHO IDENTIFIES AS AFRICAN
AMERICAN, YOU CAN'T NECESSARILY
SEPARATE -- IF I WAS SOMEONE WHO
WAS AUTISTIC AND I'M ALSO
AFRICAN AMERICAN THERE'S AN
INTERSECTIONALITY I THINK ALSO
NEEDS TO BE ADDRESSED SO AGAIN
AS WE ARE LOOKING AT THE
DIFFERENT TOPIC AREAS, I REALLY
WANT TO ENSURE ALL THE DIFFERENT
INTERSECTIONS ARE BEING
REFLECTIVE IN HOW RESEARCH IS
BEING DONE.
AND I KNOW THAT THIS IS
SOMETHING THAT'S LIKE THE HOT
TOPIC RIGHT NOW BUT I HAVE TO
HIT IT WHILE THE FIRE'S HOT AND
PEOPLE ARE INTERESTED IN THIS.
NOW'S THE TIME.
BECAUSE WE DO HAVE THIS INTEREST
NATIONALLY, INTERNATIONALLY
GOING ON IN THE WORLD THIS
SOMETHING WE NEED TO BE FOCUSED
ON AND FIGURE OUT HOW TO WEAVE
INTO THE PLAN GOING FORWARD.
ANOTHER THOUGHT I HAD TOO AS YOU
WERE GOING THROUGH, SUSAN, AND I
DON'T NECESSARILY KNOW IF IT'S
AUTISM RESEARCH OR MORE RESEARCH
IN GENERAL BUT IN SOME OF THE
WORK I'VE DONE AND WORKING WITH
RESEARCHERS ON DIFFERENT
PROJECTS IS THIS IDEA OF
PROVIDING STIPENDS OR PAYMENT TO
PARTICIPANTS.
IF YOU REALLY WANT TO DIVERSE IF
I WHO IS ABLE TO PARTICIPATE OR
WANT FAMILIES TO SUPPORT THE
WORK YOU'RE DOING, IT'S
IMPORTANT TO ENSURE THERE'S SOME
TYPE OF STIPEND TO SUPPORT THEM
BECAUSE THERE IS VALUE IN WHAT
WE BRING TO THE TABLE AND I
THINK THAT NEEDS TO BE
RECOGNIZED AND I OFTEN HEAR FROM
PEOPLE IN THE COMMUNITY, OH,
IT'S FEDERAL MONEY.
I CAN'T NECESSARILY DO THAT.
I DON'T KNOW HOW THAT GETS
CHANGED OR WHAT THE PROCESS IS.
THESE ARE THINGS I'M HEARING BUT
I THINK IT'S ANOTHER PIECE ALSO
IMPORTANT AS WE TALK ABOUT
DIVERSITY IN THE WORK.
THANK YOU AGAIN FOR GIVING ME
THE FLOOR.
>> THANK YOU FOR THOSE IMPORTANT
COMMENTS.
WE'LL NOTE THEM AS WE KNOW
DIVERSITY IS AN IMPORTANT THING.
JOSH.
>> I'LL INTERJECT IN MANY
STUDIES SUBJECTS ARE ACTUALLY
RECOMPENSED FOR THE TIME IN THE
STUDY BUT I'M SURE YOU MEAN MORE
SUBSTANTIALLY THAN THAT.
>> YES, I DO.
THANKS, JOSH.
>> THANK YOU.
SO LET'S GO TO CRAIG JOHNSON.
>> THANKS, SO MUCH, SUSAN.
AS I LOOKED OVER THE STRATEGIC
PLAN IT'S VERY RESEARCH BASED
AND I LOVE THE RESEARCH AND I
THINK IT'S SO IMPORTANT.
I THINK ONE OF THE QUESTIONS I
HAVE AND ESPECIALLY AS I'M
UNDERSTANDING THE COMMITTEE, I'M
STILL IN THE PROCESS OF
UNDERSTANDING ALL WE DO, HOW
LONG'S IT TAKE FROM GOING FROM
RESEARCH TO MEETING TANGIBLE
NEEDS, PROVIDING SOLUTIONS?
THAT'S WHERE I'M AT.
I'M WITH THE FAMILIES WHO ARE
WITH THE TANGIBLE NEEDS AND
SOLUTIONS.
MANY PEOPLE GET ON THE PUBLIC
FORUM THEY LOOK AT IT AND DON'T
FULLY UNDERSTAND ALL THE
RESEARCH.
IF YOU TALK TO ANYBODY I WOULD
WORK WITH, THEY WOULDN'T KNOW
THERE WAS RESEARCH GOING ON AND
THEY JUST HAVE NEEDS.
THEY HAVE MULTIPLE TYPES OF
NEEDS.
THE RESEARCH HELPS US OBVIOUSLY
MEET THOSE NEEDS AND IDENTIFY
THE AREAS THAT REALLY NEED TO BE
FOCUSSED ON BUT YOU KNOW, WHAT
I'M TRYING TO FIGURE OUT IS ARE
WE ALL RESEARCH BASED OR DOES
THE RESEARCH ULTIMATELY GET TO
TANGIBLE SOLUTIONS TO HELP
FAMILIES WHO I'M WORKING WITH ON
AN ONGOING BASIS WHERE THEY'RE
AT AND DEALING WITH THE ISSUES
AND MANY PEOPLE THAT COME ON THE
PUBLIC FORUM.
>> THE STRATEGIC PLAN IS A BROAD
DOCUMENT AND IT COVERS ANY AND
ALL AND WE'RE NOT WAITING FOR
CERTAIN RESEARCH TO BE COMPLETED
BEFORE WE TAKE ACTION ON THINGS
THAT CAN BE DONE IN THE HERE AND
NOW AND WE HAVE SERVICES
AGENCIES ON OUR COMMITTEE TOO
BUT JOSH DO YOU HAVE SOMETHING
TO ADD?
>> CRAIG, I APPRECIATE THE
OPPORTUNITY TO RESPOND DIRECTLY
TO YOUR QUESTION TO HOW LONG
DOES IT TAKE.
THE ANSWER IS IT DEPENDS ON THE
RESEARCH.
PRETTY MUCH MOST THE THINGS WE
DO RIGHT NOW FOR INDIVIDUALS
WITH AUTISM WHETHER WE'RE
TALKING ABOUT SCREENING IN
PEDIATRIC PRACTICES OR SOME OF
THE SUPPORTS WE DO HAVE
AVAILABLE FOR HOUSING FOR JOBS
AND THE LIKE HAVE ALL BEEN
PIONEERED IN RESEARCH SETTINGS
AND THEN APPLIED TO THE
COMMUNITY.
IF WE'RE TALKING ABOUT SOME OF
THE IMPORTANT GENETICS WORK
BEING DONE YOU'LL READ ABOUT
LATER IN THE SUMMARY OF
NOMINATIONS THAT MAY BE DECADES
AWAY FROM AFFECT BEING NEW
INTERVENTIONS BUT ON THE OTHER
HAND THE SCREENING PRACTICES AND
SERVICES STUFF AND TAKING INTO
ACCOUNT GENDER DIFFERENCES,
ETCETERA.
THEY ALL CAN HAVE IMPACT IN THE
NEXT YEAR OR FIVE YEARS
DEPENDING ON WHAT WE'RE TALKING
ABOUT.
I THINK THERE'S DIFFERENT TIME
FRAPZ -- FRAMES FOR TRANSLATION
AND WHEN IS A RECOMMENDATION TO
BE TAKEN UP AND YOU HEARD SOME
OF THAT TODAY IN PAYING
ATTENTION THAT INDIVIDUALS WITH
AUTISM HAVE BEEN EXPOSED TO
TRAUMAS.
WHILE WE NEED MORE RESEARCH AND
THE RIGHT WAY TO MITIGATE IT AND
ENSURING PEOPLE ARE COGNITIVE OF
THAT AND CARE SAY RECOMMENDATION
WE CAN MAKE WHICH DOES NOT
REQUIRE FURTHER RESEARCH, RIGHT?
THANK YOU.
>> WE ALSO HAVE MORE
REPRESENTATION ON OUR COMMITTEE
OF ADDITIONAL AGENCIES AND
DEPARTMENTS THAT CAN HELP US ON
SOME OF THE SERVICES AND SUPPORT
ISSUES IMMEDIATE TO THE
COMMUNITY AND I'LL CALL ON
AMANDA REICHERT.
>> I WANTED TO COMMENT ON YETTA
AND CRAIG'S COMMENTS.
AT ACL IN THE PAST YEAR AND A
HALF WE REALLY HAVE STEPPED UP
THE EMPHASIS ON
INTERSECTIONALITY AND TRYING TO
DISCOVER WHAT AWAY CAN DO TO
INCREASE THAT NOT ONLY THROUGH
THE SERVICES BUT AT NIDLER THE
RESEARCH WING OF ACL AND WE'RE
IN CARP RATING THAT AND WE --
INCORPORATING THAT AND WE
INCLUDED AN REQUIREMENT PEOPLE
HAVE TO INCLUDE RACE AND
ETHNICITY PROPORTIONAL TO THE
POPULATION THEY SERVE AND TALK
ABOUT WHY -- HOW THEY ARE GOING
TO DO THAT AND NOT ONLY WITH
THEIR RESEARCH PARTICIPANTS BUT
ALSO WITH THEIR STAFF.
AND SO IT GOES ALL THE WAY FROM
THE TOP OF ACL DOWN TO THE
SERVICES TO THE RESEARCH TO THE
GRANTEES.
WE'RE REALLY TRYING TO GET THAT
PUSH THROUGH.
THE OTHER THING THAT'S EXCITING
YOU MAY NOT KNOW ABOUT IS THAT A
YEAR AGO, MORE THAN A YEAR AGO
NOW, THE PRESIDENT PUT OUT AN
EXECUTIVE ORDER TO FOCUS ON DATA
RELATED TO UNDER SERVED
POPULATIONS.
AND THERE'S A COMMITTEE, A BETA
COMMITTEE FOR THAT AND I'M NOT A
PART OF THAT BUT FROM WHAT I
UNDERSTAND IT'S GOING ACROSS A
LOT OF DIFFERENT VULNERABLE
POPULATIONS BUT RECOGNIZING THE
PEOPLE WHO HAVE MULTIPLE
VULNERABILITIES AND WHAT THAT
CAN BE EXPONENTIAL RATHER THAN
ADDITIVE THE EFFECTS OF THAT.
IT IS SOMETHING THAT PEOPLE ARE
TALKING ABOUT NOW FINALLY.
SO I DIDN'T KNOW IF YOU WERE
AWARE OF WHAT WAS GOING IN ACL
AND NIDLER BUT IT'S THE MOST
PROGRESS I'VE SEEN IN MY CAREER
SO I'M PRETTY OPTIMISTIC ABOUT
IT.
AND CRAIG, I JUST WANTED TO
RESPOND I'M NOT SURE IF YOU'RE
FAMILIAR WITH THE NIDLER
RESEARCH PORTFOLIO AND OUR
WEBSITE WHERE WE SHARE ALL THE
RESEARCH FINDINGS AND REQUIRE
ALL OUR GRANTEES TO NOT ONLY
INCLUDE THE INPUT OF PEOPLE WITH
DISABILITIES IN DESIGNING THEIR
RESEARCH AND THROUGHOUT THEIR
RESEARCH BUT ALSO TO CREATE
PRODUCTS THAT ARE USABLE FOR A
WIDE RANGE OF STAKEHOLDERS
INCLUDING PEOPLE WITH
DISABILITIES AND THEIR FAMILIES
SO THEY'RE NOT JUST WRITING
RESEARCH PAPERS AND WRITING THEM
IN PEER-REVIEWED JOURNALS,
THEY'RE EXPECTED TO WRITE FACT
SHEET OR BLOGS OR WHATEVER
PODCASTS THAT ARE GOING TO
ATTRACT AND BE USEFUL FOR
FAMILIES AND PEOPLE WITH
DISABILITIES DIRECTLY.
INCLUDING INTERVENTIONS AND
THAT'S THE OTHER THING I WAS
GOING TO SAY IS NIDLER HAS A
FOCUS ON STAGES OF RESEARCH AND
SO WE PAY ATTENTION, TO, OKAY,
THIS TOPIC HAS COME UP A LOT BUT
WE NEED TO FIGURE OUT WHAT FUND
FUNDING MECHANISM WE NEED TO
OFFER SO IT'S GOING UP TO WAYS
IT GETS OUT TO A LARGER
POPULATION WHEN IT'S BEEN AN
EVIDENCE-BASED PRODUCT AND WAYS
TO MAKE IT MORE USEFUL DIRECTLY
TO THE PEOPLE WHO NEED IT.
SO THANK YOU.
>> THANK YOU.
NEXT A QUESTION FROM STEVE
WHITLO OR COMMENT.
>> THANK YOU.
I JUST WANTED TO COMMENT ON WHAT
CRAIG HAS SAID AND REINFORCE A
LITTLE BIT.
IN OUR EXPERIENCE IN PROVIDING
SERVICES, A LOT OF TIMES THE
RESEARCH IS IMPORTANT BUT THE
PRACTICAL APPLICATION OF THE
PROGRAMS THAT EXIST BECOME
HIGHER ON THE URGENCY SCALE THAN
SOME OF THESE THINGS.
I WOULD JUST LIKE TO ADDRESS THE
COORDINATION BETWEEN SERVICES
AND IDENTIFYING A PLAN FOR THE
FAMILY AND INDIVIDUAL EITHER
DIAGNOSED OR YOUNG ADULT OR
WHATEVER STAGE THEY ARE IN THEIR
LIFE, DEVELOP PLAN, IDENTIFY THE
RESOURCES OUT THERE AND FOLLOW
THROUGH SO THE FAMILY IS NOT MET
HEAD ON BY ANOTHER UNANTICIPATED
HURDLE AND THIS WAS DISCUSSED IN
THE HOUSING ELEMENT EARLIER
WHERE THE PRESIDENTS OF
HOMELESSNESS ROSE WHEN THERE
WASN'T PLANNING FOR WHAT HAPPENS
WHEN FOLKS GET OLDER.
THAT'S A COORDINATION OF
SERVICES AND PLANNING ISSUE.
WHERE IT SAYS ADDRESS THE WHOLE
SPECTRUM AND LIFE SPAN, I THINK
THAT SHOULD BE AN IMPORTANT PART
OF WHAT WE SUGGEST FOR A PLAN.
>> WE'LL LOOK TO YOU AND OTHERS
WHO HAVE EXPERIENCE IN THOSE
AREAS TO GIVE FEEDBACK.
THANK YOU FOR SHARING THAT.
SCOTT, DO YOU HAVE ANOTHER
COMMENT?
>> SORRY, I WAS MORE FOCUSSED ON
THE TRAUMA PIECE BEFORE IN
ADDITION SO THE
INTERSECTIONALITY PIECE I WANT
TO CONCUR AND INCLUDE THE
STRATEGIC PLAN IN MATERIALS OF
REFERRING BACK TO THE SPECIFIC
FOR INSTANCE THE EXECUTIVE
ORDERS.
THERE'S SIX EXECUTIVE ORDERS IN
THAT SPACE ON DIVERSITY, EQUITY,
INCLUSION AND ACCESSIBILITY.
IT'S BEEN A HUGE PRIORITY FOR US
ACROSS THE FEDERAL GOVERNMENT
AND HOPE IT INTERCONNECTS THERE
TO THE FOCUS ON STRATEGIC PLAN
AND MAKE SURE RACE, GENDER
IDENTITY AND SOCIO ECONOMIC
STATUS, ETCETERA IS WOVEN INTO
THE TAPESTRY WITH THIS STRATEGY
PLAN DEVELOPMENT.
AND THERE ARE SOME THINGS I LEFT
OUT ON THE COMMENTS ORIGINALLY
ON THE SURVEY.
CAN WE SEND YOU ADDITIONAL AND
THERE'S SPECIFIC STUDIES AND IS
IT STILL POSSIBLE TO SEND YOU
SOME ADDITIONAL INFO THAT COULD
BE HELPFUL FOR THE DEVELOPMENT
OF THE STRATEGIC PLAN ON SOME OF
THESE FOCUSES AND SPECIFIC
ARTICLES?
>> ABSOLUTELY.
WE'D WELCOME FURTHER FEEDBACK
AFTER THE SESSION AND I KNOW IT
SOMETIMES IS CHALLENGING TO
THINK ON YOUR FEET AS YOU LOOK
AT ALL OF THIS AND THERE'S A LOT
OF INFORMATION TO TAKE IN.
IF YOU HAVE ADDITIONAL COMMENTS
YOU CAN SEND THEM TO US.
I DON'T FLKNOW IF IT WOULD BE
EASIER TO SEND E-MAILS OR IF
YOU'D LIKE A SURVEY TYPE
OPPORTUNITY OPENED TO PUT THINGS
INTO CATEGORIES.
DO YOU HAVE A THOUGHT ABOUT
THAT?
>> I'D LIKE ARTICLES TO CITE AND
I THINK I LEFT OUT
TRANSPORTATION STUFF AND WE
DON'T YET HAVE REPRESENTATION ON
THE COMMITTEE FROM THE
DEPARTMENT OF TRANSPORTATION AND
WE'VE COLLABORATED WITH DOT
BEFORE.
I'M OKAY WITH SENDING STUFF IN A
WORD DOCUMENT YOU MAY WANT TO
SEE WHAT THE OTHER COMMITTEE
MEMBERS THINK AND IF FOLKS WERE
INTERESTED IN RE-OPENING A
STRUCTURED SURVEY AS LONG AS
IT'S NOT TOO MUCH COMPLEXITY FOR
YOU AND YOUR STAFF TO DO.
>> I THINK WE COULD HANDLE THAT.
OUR GOAL IS TO GET ALL THE
FEEDBACK IN TO GET THE DRAFTS AS
CLOSE TO WHAT THE COMMITTEE
WANTS AS POSSIBLE.
WE'LL WANT TO DO EVERYTHING WE
CAN TO BRING IN THE FEEDBACK AND
WOULD APPRECIATE ANY ARTICLES
YOU WOULD SHARE OR WEBSITES OR
OTHER SOURCES OF INFORMATION AND
DO PLAN TO MENTION THINGS ABOUT
MAJOR FEDERAL INITIATIVES GOING
ON SUCH AS WHAT YOU MENTIONED
WITH THE EXECUTIVE ORDERS.
WE HAVE A LITTLE BIT MORE TIME.
ARE THERE MORE COMMENTS FROM
ANYONE ELSE FROM THE COMMITTEE
WHO MAY NOT HAVE SPOKEN OR JOSH
WOULD YOU LIKE TO CHIME IN?
>> NO, JUST OPEN UP TO WRAP THIS
PART OF IT UP BUT PLEASE IF YOU
HAVE MORE COMMENTS OR QUESTIONS.
AND THE SEND COMMENTS HERE CHAT.
STEVE IS STANDING BY IF YOU
PREFER TO USE THAT FOR ANY
REASON.
WELL, REMAIN RIGHT ON TIME AND
SUGGEST WE TAKE A 7 MINUTE BREAK
AT 4:25 TO DISCUSS THE NEXT VIM
-- SUMMARY OF ADVANCES THE NEXT
TASK OF THE COMMITTEE.
>> THANK YOU EVERYBODY FOR THE
FEEDBACK.
WE APPRECIATE IT.
I'M GOING GIVE A QUICK
INTRODUCTION TO THE IACC SUMMARY
OF DISCUSSION BEFORE WE GET INTO
IT BUT AS A REMINDER THIS IS AN
ANNUAL REPORT REQUIRED BY THE
AUTISM CARES ACT OF 2019 AND THE
FINAL PRODUCT THE COMMITTEE
WORKS ON IS A SUMMARY DOCUMENT
WITH LAY FRIENDLY SUMMARIES OF
THE 20 MOST SIGNIFICANT ADVANCES
IN ASD OR AUTISM BIOMEDICAL
RESEARCH SELECTED BY THE
COORDINATING COMMITTEE.
MEMBERS HAVE BEEN WORKING TO
COMPLETE THE 2020 VERSION AND
THE 2021 AND YOU ALL HAVE VOTED
NOW ON THE CONTENT FOR THE 2020
AND WE'RE IN THE PROCESS OF
PUBLISHING THAT.
THAT WILL BE COMING OUT PROBABLY
SOME TIME IN MAY AND WE'LL
HAPPILY INFORM YOU AND SEND THE
MESSAGE ON OUR E-MAIL AND
TWITTER WHEN THAT COMES OUT.
TODAY WE'LL BE TALKING ABOUT THE
2021 SUMMARY OF ADVANCES.
YOU ALL HAVE COMMITTED
NOMINATIONS FOR THAT.
YOU THIS IS REHASHING THE
PROCESS AND AT THE FINAL STAGE
OF THE FINAL PUBLICATION.
THANK YOU FOR YOUR HARD WORK IN
MAKING THE NOMINATIONS AND
DISCUSSING THEM AND GETTING US
TO THE POINT WHERE WE HAVE AN
ALMOST FINAL PUBLICATION AND
THANK YOU TO THE OARAC STAFF FOR
YOUR WORK ON THIS.
THE PUBLICATION DATE IS MAY
WE'RE ANTICIPATING AND THE
ARTICLES WILL COVER ALL SEVEN
TOPIC AREAS OF THE IACC
STRATEGIC PLAN AND SOMETHING NEW
WE WOULD LIKE TO SAY IS THIS
YEAR WE'LL BE ISSUING AN EASY
READ VERSION THAT CONTAINS ONE
SENTENCE SUMMARIES OF IN EASY TO
READ LANGUAGE AND THAT WILL BE A
NEW ADDITION THIS YEAR.
ON THE 2021 SUMMARY OF ADVANCES
OUR PROCESS IS TODAY WE'LL LOOK
AT THE ARTICLES NOMINATE AND
AFTER THE MEETING WE'LL SEND
BALLOTS TO THE IACC MEMBERS TO
VOTE ON YOUR TOP 20 AND AFTER
THAT WE'LL FOLLOW THROUGH THE
SAME PROCESS OF WORKING TOWARDS
GETTING A PUBLICATION TOGETHER
AND BEFORE HE -- PREPARE
SUMMARIES OF THE ARTICLES AND
PROVIDE THE FINAL PUBLICATION WE
HOPE WILL COME OUT IN THE FALL
OF 2022.
SO NOW WE'D LIKE TO HAVE SOME
TIME TO TALK ABOUT THE
NOMINATIONS AND SO JOSH, IF
YOU'D LIKE TO TAKE IT FROM HERE.
>> THANK YOU, SUSAN, TO REMIND
YOU OF THE PROCESS WE'LL FOLLOW
TODAY.
YOU ALL RECEIVED A LENGTHY
PACKET.
PLEASED AT THE NUMBER OF
NOMINATIONS YOU ALL SUBMITTED
OVER 18 PAGES WORTH OF
NOMINATIONS.
EACH ONE IN THE PACKET IS
DESCRIBED BY A SUMMARY BY THE
NOMINATOR JUSTIFYING THEIR
NOMINATION FOR INCLUSION IN THE
DOCUMENT.
OUR GOAL IS TO GO THROUGH THE
DISCUSSION AND FLAG WHAT IS
PARTICULARLY NOTEWORTHY OR FLAG
FOR ONE OR MORE REASONS MEMBERS
WOULD LIKE TO FLAG FOR POTENTIAL
REMOVAL FROM THE LIST OR
OTHERWISE COMMENT ABOUT.
SO WE'RE GOING GO THROUGH EACH
OF THOSE QUESTIONS IN TURN.
SOME QUESTIONS HAVE QUITE A LOT
OF NOMINATED ARTICLES SO WE'RE
NOT GOING TO GO THROUGH EACH AND
EVERY NOMINATED ARTICLE BUT I
WANT TO MAKE SURE TO GIVE
EVERYONE AN OPPORTUNITY TO RAISE
FOR DISCUSSION ANY ARTICLES
THEY'D LIKE TO RAISE.
THE FIRST GROUP OF ARTICLES, THE
FIRST FOUR ARE ON SCREENING AND
DIAGNOSIS.
QUESTION 1 OF THE CURRENT
STRATEGIC PLAN.
THERE WERE A NUMBER OF ARTICLES
NOMINATED AND AS WE GO THROUGH
THE LIST IF ANYONE HAS COMMENTS,
PLEASE DO SO.
WE HAVE FOUR ARTICLES ON THE
FIRST PAGE RACE, ETHNICITIES AND
COMPUTATIONAL METHODS, EFFECTIVE
FAMILY NAVIGATION AND THIS IS
THE KIND OF RESEARCH THOUGH FOR
CHILDREN THAT WAS SUGGESTED
WOULD BE HELPFUL FOR ADULTS WITH
AUTISM.
CERTAINLY MEETING A NEED AND
NEXT SLIDE NOW THERE ARE THREE
MORE IN THIS QUESTION 1.
SO WOULD ANYONE LIKE TO FLAG ANY
OF THESE, PROMOTE ONE YOU
NOMINATED OR SOMEONE ELSE
NOMINATED AS BEING PARTICULARLY
IMPORTANT OR OTHERWISE MAKE
COMMENTS?
>> THIS IS PAUL WONG FROM THE
SIMONS FOUNDATION.
I AM NOT THE PERSON THAT
NOMINATED THE ARTICLE YOU
TOUCHED, THE FINEBERG ARTICLE ON
FAMILY NAVIGATION BUT I ALSO
AGREE THIS IS IMPORTANT WORK
THAT SHOWS VALUE OF A SPECIFIC
KIND OF SUPPORT IN PROMOTING
RECOGNITION AND DIAGNOSIS.
I HAVE NOT READ THE ARTICLE AND
I'M LOOKING AT THE DESCRIPTION
FROM THE HRSA AND MAYBE THE
PROJECT WENT FURTHER AND COMING
OUT IN ANOTHER PAPER THEY LOOKED
NOT ONLY AT RECOGNIZING,
DIAGNOSIS AND WHETHER FAMILIES
GOT CONNECTED WITH FURTHER
SERVICES.
>> I THINK THE NOMINATOR WAS
HRSA.
I DON'T KNOW IF THE NOMINATOR
WOULD LIKE TO MAKE ADDITIONAL
COMMENTS REGARDING THAT.
>> I WAS INVOLVED IN THAT AND I
CANNOT COMMENT ON THAT
PARTICULAR ITEM.
>> PONG
>> OKAY.
>> SORRY, JOSH I WANT TO LOOK AT
THE SECOND SLIDE FOR A SECOND.
I WON'T TURN ON MY VIDEO BECAUSE
I'M IN AN AIRPORT BUT THE ONE
THING THAT STRIKES ME BUT I
DIDN'T NOMINATE AND WOULD NEED
TO RELOOK AT THE LITERATURE FROM
2021 IS ONE OF THE TIMELY
QUESTIONS HERE WAS DIAGNOSED
FORMS OF DIAGNOSIS WHICH WAS A
BURNING NEED DURING THE PANDEMIC
AND AN AREA OF CONTROVERSY BUT
THE QUESTION IS HAS THERE BEEN
GOOD WORK PUBLISHED.
>> I'M SURE NIMH FUNDED TO LOOK
AT THAT AND PERHAPS REFLECTING
HOW MUCH TIME IT TAKES AND
THERE'S THE CHANG ET AL PAPER
AND IS IT REALLY THAT RELEVANT
BUT IT'S A GROUP FUNDED BY NIH
GRANTS AND TRYING TO DEVELOP
EASY AUTOMATED METHODS TO BE
USED IN REMOTE SETTINGS TO
DETERMINE A SCREENING APPROACH.
IN THIS PARTICULAR CASE THESE
INVESTIGATORS WHO WERE AT DUKE
DEVELOPED AN APP TO TRACK THE
GAZE OF INDIVIDUAL TODDLERS WHO
HAVE NOT YET BEEN DIAGNOSED AND
ASK WHETHER TODDLERS WHO WILL BE
DIAGNOSED VERSUS TYPICALLY
DIVERSE TODDLERS DIFFER IN THEIR
EYE TRACKING.
IT'S AN EARLY STAGE OF
DEVELOPMENT BUT THEORETICALLY
CAN BE USED IN REMOTE SETTING.
SPEAKS TO IT BUT NOT EXACTLY
WHAT YOU ASKED FOR.
>> THANK YOU.
WE'LL LOOK TO 2022 FOR MORE.
ALICE.
>> THERE ARE SOME 2021 PAPERS
THAT TALK ABOUT REMOTE
DIAGNOSIS.
I COULD SEND SOME.
I JUST SENT ONE TO SUSAN BUT
THERE ARE SEVERAL MORE.
WE WERE STRUGGLING WITH THIS AT
THE BEGINNING OF THE PANDEMIC
AND BY 2021 THEY WERE STARTING
TO PUBLISH PAPERS ABOUT IT.
>> UNFORTUNATELY, IT DIDN'T MAKE
IT IN TIME FOR THIS ONE.
>> I'M ALSO NOT SURE THEY WOULD
MEET THE REAL CRITERIA.
THERE'S REFLECTIONS BUT NOT SURE
THERE WASN'T SUFFICIENT NEW DATA
AND THE OTHER THING THAT'S
COMPLICATED IS IN THE PANDEMIC
IT WAS TRICKY TO DO ANY KIND OF
COMPARISON BETWEEN IN PERSON AND
REMOTE.
>> AND THAT'S WHAT WE'D WANT TO
SHOW IS REMOTE PROCEDURES TO
WORK.
AILS.
-- ALICE.
>> THIS IS VERY EXCITING THE
DATA SUPPORTS A MOBILE APP AND
THEY FOCUSSED ON THE EYE
MOVEMENT.
THERE'S FURTHER DEVELOPMENT TO
BE ABLE TO BE USED I THINK I
HEARD MORE DATA.
>> I THINK SO.
YOU'RE SPEAKING OF COURSE ABOUT
THE CHINA PAPER.
I WOULD HIGHLIGHT THAT AS BEING
ONE AT LEAST RELEVANT TO THE
CURRENT QUESTION.
WOE HAD COMMENTS ABOUT CHANG AND
FINEBERG AND WE'LL MOVE ON TO
QUESTION NUMBER TWO.
IT'S ON THE BIOLOGY OF AUTISM.
THERE'S A NUMBER OF DIFFERENT
STUDIES HERE.
THE FIRST FIVE OR SO ARE ON THE
FIRST SLIDE, EARLY SOCIAL
COMMUNICATION, GROWTH
DIFFERENCES IN THE BRAINS OF
INDIVIDUALS OF INFANTS WHO WILL
GO ON TO BE DIAGNOSED WITH
AUTISM SPECTRUM DISORDER AND
LONGITUDINAL STUDIES OF SOCIAL
COMMUNICATION, LONG-TERM
MATURATION OF ORGANOIDS AND I
CAN DISCUSS THAT IF YOU'D LIKE
AND WHY THAT'S RELEVANT TO THE
BIOLOGY OF AUTISM AND SEX
REGULATIONS.
ANY COMMENTS OR QUESTIONS.
DENA GO AHEAD.
>> PAGE 2 HAS THE FOUR ARTICLES
THE HRSA ARTICLE BUT I DIDN'T
SEE PAGE 3.
DID I MISS IT?
>> I HAVE IT IN MINE.
I DON'T HAVE IT PRINTED.
I HAVE THE PDF.
MAYBE THERE WAS A CHALLENGE IN
PRINTING BUT ON PAGE 3rd HAVE
CITRAMAN AND WEATHERBY.
LET'S GO BACK ONE SLIDES.
>> I'M SORRY.
>> GO AHEAD AND MAKE YOUR
COMMENT.
>> I WANTED TO REPORT I HAVEN'T
HAD TIME TO READ IT YET BUT
THERE WAS A RECENT STUDY OUT OF
GERMANY THAT SHOWS HIGHLY
STRUCTURED, HIGHLY ACADEMIC
PRESCHOOLS ARE GETTING BETTER
SHORT-TERM OUTCOMES BUT LONGER
OUTCOMES ARE WORSE FOR ALL
CHILDREN NOT KIDS WITH
DISABILITIES PER SE BUT I THINK
THAT'S A SIGNIFICANT THING IN
SCREENING TOOLS THAT COME AT AN
EARLY AGE.
I KNOW WE'RE LOOKING TO MITIGATE
THE IMPAIRMENT-RELATED ISSUES OF
AUTISM BUT WORRIED ABOUT THE
EARLY DIAGNOSIS STUDIES SUCH AS
THIS ONE WILL RESULT IN KIDDOS
THAT MIGHT NEED JUST MORE TIME
FOR PLAY, MAY NEED MORE TIME FOR
SOCIALIZATION AND OUTDOORS
INSTEAD OF SUCH INTENSIVE
NORMALIZATION AND COMPLIANCE
TRAINING.
I DON'T KNOW.
I JUST WANTED TO MENTION THAT
BECAUSE IT SHINES A LIGHT ON
THIS FROM A DIFFERENT
TRAJECTORY.
>> I'M NOT FAMILIAR WITH THE
PAPER BUT A GOOD POINT AND
ECHOED IN THE RECENT DECISION ON
SCREENING.
IT'S BEEN BACKED UP IN A NUMBER
OF AREAS THAT WE NEED TO
DEMONSTRATE NOT JUST THE ABILITY
TO IDENTIFY INDIVIDUALS EARLIER
BUT ALSO TO DEMONSTRATE THAT
IDENTIFICATION USING THESE KINDS
OF TOOLS WILL GET RESULT IN
BETTER OUTCOMES.
I WILL POINT OUT THERE'S FAIRLY
GOOD, NOT SUPER GOOD, BUT FAIRLY
GOOD DATA AS OTHERS HAVE
PRESENTED HERE TO EARLIER
ITERATIONS TO THIS GROUP THAT
EARLIER INTERVENTION DOES RESULT
IN BETTER OUTCOMES BUT IT WOULD
BE BETTER AND NEEDS TO BE
DEMONSTRATED IN THE CONTEXT OF
THE SCREENING PROCEDURES.
>> I WOULD REFER PEOPLE BACK TO
SAM'S COMMENTS RELATED TO THIS
AS WELL.
THANK YOU.
>> AND I THINK SAM WOULD LIKE TO
MAKE A COMMENT PERHAPS ABOUT THE
ISSUE.
THE HAND WENT UP AS SOON AS I
SAID THAT.
GO AHEAD, SAM.
>> I JUST WANTED TO SAY THIS
ALSO CONNECTS BACK TO COMMENTS I
HAD ON THE STRATEGIC PLAN IN
WHICH THERE WAS A QUESTION ON
EARLY IDENTIFICATION.
HAD LANGUAGE SAYING THE GOAL IS
TO IDENTIFY KIDS AS SOON AS
POSSIBLE.
THAT MIGHT HAVE BEEN REASONABLE
BACK WHEN THE QUESTION WAS
BETWEEN IDENTIFYING KIDS AGE 3
VERSUS 8 OR LATER.
NOW WE'RE SEEING STUDIES THAT
ARE IDENTIFYING KIDS AT AGE 12
MONTHS AND WE DON'T HAVE THE
EVIDENCE WHAT I CALL SUPER EARLY
IDENTIFICATION CONNECTED TO
BETTER LONG-TERM OUTCOMES
BECAUSE WE DON'T HAVE RESEARCH
ON THE EARLY INTERVENTION.
>> I WILL REITERATE WE NEED THE
EVIDENCE
>> I THINK THAT'S WHY WE NEED TO
ALSO EDIT THE LANGUAGE IN THE
STRATEGIC PLAN TO REFLECT THAT.
>> FAIR ENOUGH.
THAT'S AN EXCELLENT POINT AND
JUST ADD OF COURSE WE CAN'T DO
THE STUDIES TO DETERMINE WHETHER
WE CAN GET CLINICAL BENEFIT
UNTIL WE DO IDENTIFY THEM
EARLIER.
AND THERE'S A SECOND REASON WHY
THE EARLY IDENTIFICATION STUDIES
ARE BEING DONE TO BE CLEAR.
WE KNOW THE BIOLOGY OF AUTISM
STARTS EARLY IN LIFE BUT DON'T
UNDERSTAND HOW THAT UNFOLDS AT
EARLIER AGES BECAUSE WE HAVEN'T
BEEN ABLE TO IDENTIFY
INDIVIDUALS EARLIER.
SO IT'S NOT JUST ABOUT TREATMENT
BUT ALSO ABOUT UNDERSTANDING
THAT WE NEED TO DEVELOP THAT
THIGHS STUDIES AIMED AT
IDENTIFYING CHILDREN EARLIER AT
RISK FOR AUTISM WILL ALLOW US TO
UNDERSTAND THAT BIOLOGY.
BECAUSE EVEN THOUGH OF COURSE
WHAT WE'RE TALKING ABOUT IS
TRYING TO IMPROVE THE LIVES OF
THESE CHILDREN, IMPROVING THE
LIVES STILL RELIES ON
UNDERSTANDING THE BIOLOGICAL
UNFOLDING EARLIER ON.
OKAY.
I APPRECIATE THAT.
LET'S MOVE BACK TO QUESTION
NUMBER 2 WHICH IS RELEVANT TO
WHAT I JUST SAID WHICH IS ON THE
BIOLOGY.
HERE'S THE FIRST FIVE.
ANY COMMENTS OR QUESTIONS ON ANY
OF THESE FIRST FIVE.
DENA AND SAM I'D APPRECIATE IF
YOU PUT YOUR HANDS DOWN UNLESS
YOU WANT TO MAKE A COMMENT ON
ANY OF THESE FIVE, THANKS.
ANYBODY WANT TO MAKE COMMENTS ON
OF THESE FIVE?
I'LL NOTE SOME ARE FROM
COLLEAGUES AT NIDCB AND NICHD.
I WANTED TO MAKE A COMMENT ABOUT
THE GORDON A ET AL. PAPER TO
UNDERSTAND WHY THIS IS IMPORTANT
THOUGH IT'S NOT SPECIFIC TO
AUTISM.
AND I'LL SAY AT THE OUTSET, A.
GORDON, NO RELATION.
THIS SEEKS TO UNDERSTAND BIOLOGY
AS IT UNFOLDS EARLY IN LIFE WHEN
WE KNOW A LOT OF THE RISK
FACTORS FOR AUTISM BE GENETIC OR
ENVIRONMENTAL ARE ACTING ON THE
BRAIN.
IT'S HARD TO STUDY THE BRAIN IN
HUMAN BEINGS EARLY IN LIFE AND
WHAT THIS PAPER SHOWS IS THAT
YOU CAN ACTUALLY DO THAT USING
CELLS IN A DISH WITHOUT HAVING
TO RESORT TO STUDIES IN INFANTS
OR PREGNANT WOMEN OR HAVING TO
TRANSLATE FROM ANIMAL STUDIES.
THAT IS AN ADVANCE IN TERMS OF
BEING ABLE TO MAKE FURTHER
INFERENCES AS TO THE BIOLOGY OF
EARLY EVENTS IN AUTISM.
I SEE HANDS UP FROM DENA AND
ELAINE.
LET ME ASK IF EITHER OF YOU ARE
RESPONDING TO THIS PARTICULAR
ARTICLE FIRST?
>> NO, THE NEXT PAGE.
>> I DID WANT TO RESPOND TO THIS
BECAUSE IT COMES UP LATER WITH
THE RISK FACTORS.
HAVING MODELS LIKE YOU'RE
TALKING ABOUT TO STUDY BIOLOGY
IS IN ADDITION TO HELPING IN
TERMS OF WHATEVER INTERVENTIONS
IS ACTUALLY REALLY IMPORTANT FOR
BEING ABLE TO STUDY THESE RISK
FACTORS ESPECIALLY WHEN WE'RE
TALKING ABOUT MODIFIABLE
ENVIRONMENTAL FACTORS BECAUSE
YOU CAN HAVE THESE EXPERIMENTAL
SYSTEMS IS WHERE WE'LL GET THE
EVIDENCE FOR WHETHER OR NOT SOME
OF THE CHEMICALS WE'RE ALL VERY
CONCERNED ABOUT ARE THINGS WE
SHOULD DO SOMETHING ABOUT.
I'M JUST RAISING THAT NOW
BECAUSE THERE ARE SOME PAPERS
LOOKING AT EPI CHEMICAL EVIDENCE
AND I'M NOT SURE IT'S WHERE IT
NEEDS TO BE.
>> ALWAYS GLAD TO HAVE INPUT
FROM THE EPA HERE.
NEXT UP, DENA, YOU WANT TO MAKE
A COMMENT ABOUT NEXT SLIDE SO
LET'S MOVE ALONG.
IT'S ONE MUCH THESE FOUR
ARTICLES, IS THAT RIGHT?
>> YES.
THE ONE ALICIA PROVIDED ON THE
AGE OF WALKING AND INTELLECTUAL
DISABILITY.
AT FIRST I GOT EXCITED ABOUT
THIS BECAUSE IT WOULD GIVE AN
EXTERNALIZED EXPRESSION OF DELAY
AT LEAST TO MAYBE HELP PARENTS
TO KNOW WHAT TO EXPECT TO MAKE
THE EARLY REFERRAL BUT TO
SUGGEST THIS IS LIMITED TO
PEOPLE WITH INTELLECTUAL
DISABILITIES SEEMS SHORT SIDED
BECAUSE WE KNOW MOTOR DELAYS IN
AUTISM ENCOMPASSES THE ENTIRETY
OF THE SPECTRUM.
I WANTED TO SEE IF ALICIA MAY
HAVE INSIGHT OR IDEAS.
>> ALICIA DO YOU WANT TO MAKE A
COMMENT.
IN YOUR COMMENT YOU NOTED THE
RELATIONSHIP BETWEEN WALKING WAS
NOT PRESENT IN ASD CHILDREN
WITHOUT LOWER KWUCHLT.
--
I.Q.
>> I'M NOT SHOWING MY VIDEO
BECAUSE I AM IN THE CAR BUT I AM
LISTENING.
I DID WANT TO PUT A PLUG IN FOR
THIS PAPER THIS IS A PART OF A
CONVERSION OF STUDIES LOOKING AT
DEVELOPMENT MILESTONES IN
GENERAL IN ADDITION TO GENETIC
FACTORS THAT HELP SUPPORT EARLY
DIAGNOSIS WHICH WE KNOW IS
IMPORTANT FOR EARLY
INTERVENTIONS.
>> WE HAVE TO LOOK AT THE
DETAILS OF THE PAPER AND MAKE
SURE THE VIM DOES APPROPRIATELY
REFLECT THE DATA.
IT IS POSSIBLE DESPITE OTHER
DATA IT MAY LOOK AT MOTOR ISSUES
AND DOES NOT DETECT RELATIONSHIP
WITH ASD IN THOSE WITHOUT
INTELLECTUAL IMPAIRMENTS BUT IF
SELECTED WE'LL MAKE SURE THE
DESCRIPTION ACCURATELY REFLECTS
THE FINDINGS.
SCOTT, THIS PAPER OR ANOTHER?
>> ON PAPER MOTOR ISSUES IT
REFLECTS BACK TO A CONCERN AMONG
MANY FOLKS THE DIAGNOSTIC
CRITERIA DO A DISSERVICE BECAUSE
THE FACT IT'S MOSTLY SOCIAL
COMMUNICATION IN THE DIAGNOSTIC
AREA AND THE MOTOR EXECUTIVE
FUNCTION HAS BEEN REFERENCED AND
WE KNOW THERE'S SOME IN THE
LITERATURE THAT GO UP TO ADULTS
LOOKING AT MOTOR ISSUES.
WE STILL SEE THE GAP.
I DON'T KNOW IF THAT COULD BE
SOMETHING THAT COULD BE
EMPHASIZED SEPARATELY FROM THE
SUMMARY OF ADVANCEMENT OF
STRATEGIC PLAN IN TERMS OF
GETTING MORE RESEARCH ON THE
OTHER ASPECTS OF AUTISM IN TERMS
OF OTHER THAN SOCIAL
COMMUNICATION AS FAR AS MOTOR
SENSORY EXECUTIVE FUNCTION.
>> WE'LL DATE THAT COMMENT TO
THE PREVIOUS DISCUSSION ON THE
STRATEGIC PLAN.
THANKS, SCOTT.
A COMMENT CAME INTO STEVE.
READ IT, PLEASE.
>> DR. RIVERA WILL GIVE THE
COMMENT THEMSELVES.
>> IT'S A SIDE COMMENT BUT
IMPORTANT TO BRING UP IN OUR
DISCUSSIONS IN THE IACC THINK
ABOUT OUR LANGUAGE CAREFULLY AND
USING THE TERM PREDICTIVE FACTOR
RATHER THAN RISK FACTOR TO AVOID
STIGMATIZING LANGUAGE.
I'VE HEARD THAT TERM COME UP A
COUPLE TIMES AND WANTED TO PUT
IN A GENTLE ACKNOWLEDGEMENT OF
THAT .
>> I WANT TO REMIND US TO
RESPECTFULLY CALL OUT LANGUAGE
THAT MAY BE PERCEIVED AS
DEMEANING.
I GET THE POINT IT'S ABOUT RISK
IMPLIES A VALUE JUDGMENT ON THE
OUTCOMES.
PREDICTIVE IS JUST AS GERMANE TO
THE ISSUE WE'RE TRYING TO
UNDERSTAND WITHOUT THE VALUE
JUDGMENT.
THANK YOU.
>> THANK YOU FOR LANGUAGE THAT
MAY NOT BE HELPFUL.
TALK ABOUT PREDICTIONS OF
OUTCOME.
THE NEXT SET.
THIS IS THE NEXT SET STILL ON
QUESTIONS OF BIOLOGY.
ANY COMMENTS ON ANY OF THESE?
I WANT TO THANK ALICIA HALLADAY
FOR NOMINATING THE ARTICLES AND
WONDER WHICH SHE'D VOTE FOR.
SOME ARE THE TRAN FOCUSSED ON
NEUROSCIENCE AND DEVELOPMENT OF
BRAIN AND OTHERS LIKE ROSEN
ABOUT EXPERIENCES IN EARLY LIFE
AND SIBLINGS ON ADAPTIVE
TRAJECTORIES.
QUITE A BREADTH HERE.
I CANNOT AVOID TALKING ABOUT THE
GENETICS BUT JOE IF YOU WANT TO
HIGHLIGHT THE WILLS PAPER.
>> I'LL DEFER TO YOU.
>> IT GELS WELL WITH THE ONE ON
ORGANOIDS IN TERMS OF
IDENTIFYING -- THE QUESTION IS
WHERE AND WHEN ARE GENES ACTING.
IN THIS PARTICULAR ONE IT'S NOT
ONLY TALKING ABOUT GENETIC
INFLUENCES BUT ALSO THE
INFLUENCES OF SEX HORMONES AND
IN PARTICULAR ESTROGEN AND THE
SUGGESTION FROM THE DATA THOUGH
IT COMES FROM MODEL ORGANISM
DATA SO IT WOULD NEED TO BE
VALIDATED THERE IS MANY OF THE
AUTISM GENES WHICH CONFER
SIGNIFICANT PREDICTIVE VALUE NOR
DIAGNOSIS ARE EXPRESSED EARLY IN
LIFE AND THE ALTERATIONS BY THE
GENES CAN REVERSED BY ESTROGEN
POTENTIALLY EXPLAINING THE
DIFFERENCE OF RATES IN BOYS
VERSUS GIRLS.
IT'S ALL VERY SUGGESTIVE AND
VERY MUCH RAISING HYPOTHESIS
RATHER THAN CONFIRMING BUT
THAT'S THE WILLSEY PAPER.
I THINK WE HAVE A COMMENT.
NOT SURE THE PERSON BEHIND THAT.
>> IT'S ME ALICIA.
I'M PROBABLY THE ONE THAT
NOMINATE THE ROSEN PAPER.
IT'S PROBABLY NOT BIOLOGY AND
I'D PUT IT UNDER LIFE SPAN
ISSUES.
IT DOESN'T DECREASE MY
ENTHUSIASM FOR THE PAPER.
IT COMES FROM A STRENGTHS BASED
MODEL AND LOOKS AT LONGITUDINAL
DATA OVER DECADE AND FOCUSES ON
THE PRESENCE OF A SIBLING.
THE STUDY NEEDS FURTHER
REFINEMENT.
EVERY STUDY DOES BUT THIS IS
IMPORTANT.
IT PROBABLY DOESN'T BELONG IN
BIOLOGY.
IT PROBABLY BELONGS IN A
DIFFERENT CATEGORY AND THAT'S MY
FAULT.
>> WE CAN MOVE THAT FOR THE
VOTING.
IF THERE'S NO OTHER COMMENTS
WE'LL MOVE ON TO THE NEXT
QUESTION, THE NEXT SLIDE.
I APOLOGIZE FOR THE TITLE, RISK
FACTORS.
LET'S SAY PREDICTIVE FACTORS
INSTEAD OF RISK FACTORS AND
WE'LL GET THAT INTO ISSUE IF
THERE'S NO QUESTIONS ON THE
FIRST GROUP?
>> I WANT TO MENTION ON THE
LAWRENCE ARTICLE THE FEMALE
PROTECTIVE FACTOR -- WE'RE
LOOKING AT YOUNG CHILDREN WHERE
AUTISM MAY NOT YET BE
PRESENTING.
WE'RE LOOKING AT YOUNG CHILDREN.
IT STARTS THERE'S A 4:1
DISPARITY IN MALES VERSUS
FEMALES BUT THE FIELD IS NOT
FINDING THAT.
IN ADULTS WE'RE SEEING THAT IN
RESEARCH FROM ALL OVER THE WORLD
THE NUMBERS AREN'T HOLDING UP IN
ADULTHOOD.
I HAVE CONCERNS ABOUT GENDER IN
THESE KINDS OF STUDIES.
>> YOU'RE TALKING ABOUT THE
LAWRENCE, CORRECT?
>> YES.
>> ONE THING TO BE AWARE OF IS
THE QUESTION OF GENDER VERSUS
SEX.
AND SEX IS NOT BINARY BUT I
WONDER WHAT IS USED HERE AND
WHETHER THEY'RE TRYING TO EFFECT
THE BIOLOGICAL EXPLANATION OR
GENDER-BASED EXPLANATION.
THOSE ARE TWO KINDS OF
QUESTIONS.
THEY FOUND GENETIC RISK BY
CONNECTIVITY IN MALES BUT NOT
FEMALES.
I THINK IT'S RELEVANT TO EITHER
QUESTION.
YOU CAN IMAGINE IT CAN ARISE
THROUGH BIOLOGICAL FACTORS EVEN
PRENATALLY WITH SEX THAN GENDER
OR COULD BE A GENDER AFFECT.
YOU'RE RIGHT IN POINTING THAT
OUT.
SOME OF THE NOMINATIONS
PARTICULARLY THE CLAY AND MAYBE
ANOTHER ONE ARE COMMENTARIES
OPPOSED TO SCIENTIFIC ADVANCES.
WE HAD THE DISCUSSION BACK IN
SEPTEMBER WHETHER WE WANTED TO
CONTINUE WITH THE PREVIOUS
POLICY OF NOT INCLUDING
COMMENTARIES UNLESS THEY BREAK
NEW GROUNDS.
JOE YOU'RE MUTED.
>> I'M NOT FAMILIAR WITH THE
ONES YOU'RE REFERRING TO BUT I
THINK IT'S ACCEPTABLE TO HAVE A
COMMENTARY IF IT'S
TRANSFORMATIVE OR BREAKS NEW
GROUND OR GIVES A NEW
PERSPECTIVE ON SOMETHING.
>> I'M THINKING OF THE CLAY, THE
FIRST ONE ON THE LIST.
>> OKAY.
I THINK THAT'S MORE THAN
COMMENTARY.
I THINK IT'S, WE'VE HAD BIG
ADVANCE IN THE FIELD OVER THE
LAST 15 YEARS OF THE RECOGNITION
OF THE SINGLE-GENE DISORDERS AS
IF THAT'S ALL THAT'S HAPPENING
IS THE MUTATION IN THE SINGLE
GENE AND NOT TAKING INTO ACCOUNT
THE LINK.
THIS MOVES THE CONVERSATION
FORWARD.
>> WE'LL LEAVE IT ON THERE AS
POTENTIAL VOTING.
I HAVE TWO COMMENTS LEFT BUT
SUSAN I ALSO REALIZED IT'S 5:00
AND WE'RE NOT HALFWAY THROUGH
THE SUMMARY OF ADVANCES
DISCUSSION.
SO WE KIND OF HAVE TO END
BECAUSE PEOPLE HAVE AN
EXPECTATION TO GO.
WHAT I'D LIKE DO IF IT'S OKAY
WITH YOU I TAKE THE LAST THREE
COMMENTS AND CLOSE AND WE'LL
HAVE TO CONFER HOW TO DO THE
REST OF THE WORK WHETHER TO DO
IT E-MAIL OR DEVOTE TIME
TOMORROW TO IT.
>> THANKS, WE'LL DO THAT.
>> OKAY, BE GRIEF.
ELAINE.
>> VERY BRIEFLY AND I GUESS THE
PAPERS I'M REFERRING TO ARE ON
THE NEXT SLIDE.
>> MOVE FORWARD, PLEASE.
>> THIS GOES BACK TO MY COMMENT
ABOUT WHAT MOVES US FORWARD IN
TERMS OF UNDERSTANDING IMPACTS
OF ENVIRONMENTAL CHEMICALS ON AS
PREDICTORS OF AUTISM AND ASK WE
THINK OF REMOVING THE O STUDY.
I THOUGHT IT WAS A NICE ONE.
WITH YOU PUT THESE FORWARD AND
THERE'S PROBABLY MORE HYPOTHESES
DEVELOPMENT STUDIES IF WE HAD
THE OTHER TOOLS -- IF WE HAD THE
EXPERIMENTAL TOOLS WE CAN
UNDERSTAND BETTER.
>> MAYBE IF REMAINING PEOPLE
HAVE COMMENTS UNDER SCORE THAT.
WE ARE TRYING TO PREMATURELY
AVOID A CONCLUSION AS DEFINITIVE
BY INCLUSION HERE THAN IN THE
PAST FOR PRECISELY THIS REASON.
PAUL.
>> I WANT TO MAKE SURE THE
ARTICLE DOES INDEED KNEW
ANALYSES AND NOT JUST A
COMMENTARY.
ON THE OTHER HAND, THE LAST
ARTICLE FOR QUESTION ONE ON
SCREENING CALLS ITSELF A
COMMENTARY.
AND I WANT TO TALK ABOUT A NEW
CLASS OF GENETIC DIFFERENCE.
MOST ARE FAMILIAR WITH GENETIC
DELETIONS OR MUTATIONS WHERE ONE
BASE PAIR IS SUBSTITUTED FOR
ANOTHER AND A CHUNK OF DNA IS
DELETED OR DUPLICATED.
THIS IS A NEW CLASS AND AN
ASSOCIATION WITH AUTISM.
I THOUGHT THIS WAS AN IMPORTANT
ADVANCE IN UNDERSTANDING THE
GENETICS OF AUTISM.
>> THANK YOU FOR BRINGING THAT
OUT, PAUL.
UNLESS THERE'S OBJECTIONS GIVEN
THE OTHER CALLS ITSELF A
COMMENTARY I'LL SUGGEST WE DO
REMOVE IT FROM VOTING.
RAISE YOUR HAND IF YOU OBJECT
AND WHILE THAT I'LL GO TO
MARINICA.
>> I'LL OPT NOT TO INCLUDE
COMMENTARY EXCEPT IN MATTERS
RELATIVE TO UNDER REPRESENTED OR
MARGINALIZED COMMUNITIES
NOTORIOUSLY IGNORED BY
RESEARCHERS.
SOMETIMES GRAY LITERATURE AND
COMMENTARY IS ALL ONE HAS AND WE
COULD DEPRIVE MANY OF ISSUES OF
RELEVANCE DISCUSSED.
I STRONGLY AGREE WITH REMOVING
THE TWO PATTY PAPERS AND THE O
PAPERS FOR THE REASONS JUST
MENTIONED.
>> THANK YOU VERY MUCH FOR THOSE
COMMENTS.
>> I'LL NOTE THAT AND REMOVE IT
UNLESS THERE'S REASON TO BRING
IT BACK TO YOU AND THANK YOU FOR
THE ON THE O PAPER AND THE OTHER
CHEMICAL PAPERS WHICH WE'LL COME
BACK TO IN ONE WAY SHAPE OR FORM
WHETHER OVER E-MAIL OR IN
PERSON.
I THANK YOU.
I APOLOGIZE TO ALL WE HAVE GONE
OVER A FEW MINUTES.
WE OBVIOUSLY HAVE MORE TO DO IN
TERMS OF THE WORK ON THE SUMMARY
OF ADVANCES AND SUSAN AND I WILL
FIGURE OUT HOW TO ACCOMPLISH
THAT.
I LOOK FORWARD TO SEEING YOU ALL
TOMORROW AT 1:00.
>> YES.
TOMORROW AT 1:00.
>> OKAY.
SEE YOU ALL THEN.
.
>> THANK YOU.