I WANT TO WELCOME
EVERYONE IN THE ROOM AND ONLINE
AND COMMITTEE MEMBERS AND
MEMBERS OF THE PUBLIC AND OTHERS
LISTENING IN.
IT'S A REAL PLEASURE TO OPEN
THIS MEETING OF THE INTERAGENCY
AUTISM COORDINATING COMMITTEE.
MY NAME IS JOSHUA GORDON THE
DIRECTOR OF THE NATIONAL
INSTITUTE OF MENTAL HEALTH AND
CHAIR OF THE IACC.
TO MY LEFT HERE IS DR. SUSAN
DANIELS WHO IS IS THE DIRECTOR
OF THE OFFICE OF NATIONAL AUTISM
COORDINATOR AND THE NATIONAL
COORDINATOR FOR THE UNITED
STATES AND THE EXECUTIVE
SECRETARY OF THE IACC.
WE WANT TO ACKNOWLEDGE IT'S
WONDERFUL TO SEE SO MANY FACES
IN THE ROOM AND ALSO SO MANY
FACES ON ZOOM.
IF MEMBERS OF THE COMMITTEE
WOULD PLEASE WHO ARE ON ZOOM
WOULD PLEASE TURN THEIR CAMERAS
ON THAT WOULD BE HELPFUL AND THE
ROOM CAMERAS.
I WANT TO WELCOME TWO NEW
MEMBERS NO THE IACC RECENTLY
POINTED FOR THE HHS SECRETARY.
FIRST DR. TOM FRAZIER.
WOULD YOU LIKE TO SEE A FEW
WORDS TO INTRODUCE YOURSELF.
>> TOM FRAZIER A CLINICAL
PSYCHOLOGIST PROFESSOR AT JOHN
CARROLL UNIVERSITY IN CLEVELAND
AND MY WIFE IS A BCBA AND I HAVE
A 19-YEAR-OLD SON WITH AUTISM
AND INTELLECTUAL DISABILITY.
>> THANK YOU VERY MUCH.
WE WELCOME YOU AND LOOK FORWARD
TO YOUR MANY CONTRIBUTIONS TO
THE COMMITTEE.
OUR NEXT NEW MEMBER IS
DR. CAMILLE PROCTOR WHO I
BELIEVE IS JOINING VIRTUALLY.
WOULD YOU LIKE TO INTRODUCE
YOURSELF?
IF YOU ARE SPEAKING WE CAN'T
HEAR YOU SO YOU NEED TO UNMUTE.
WE'LL COME BACK TO MS. PROCTOR
LATER.
NEXT I WANT TO DR. JANE SIMONI.
SHE IS JOINING US TO REPRESENT
DR. LARRY TABAK THE ACTING
DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH.
WOULD YOU LIKE TO SAY WORDS TO
INDUCE YOURSELF.
>> I'M PRIVILEGED TO BE HERE AND
I'M A CLINICAL PSYCHOLOGIST
FIRST YEAR FROM ACADEMIA IN THE
FEDERAL GOVERNMENT AND GLAD TO
BE HERE FOR PEOPLE OUTSIDE AND
INSIDE BETHESDA.
>> THANK YOU VERY MUCH, JANE.
I ALSO WANT TO THANK DR. AIKLAND
STEPPING DOWN AS THE DEPUTY
DIRECTOR OF NIH AND STEPPING
INTO HER NEW ROLE OF THE
DIRECTOR OF THE DIRECTOR OF
NURSING INSTITUTE AT NIH.
AND MS. SKY BASK HAS
TRANSITIONED TO A NEW POSITION.
MS. BARBARA ROLAND WILL AREN'T
THE INDIAN HEALTH SERVICES UNTIL
A PERMANENT MEMBER IS NAMED.
BARBARA WOULD YOU LIKE TO
INTRODUCE YOURSELF?
LOOK LIKE WE DON'T HAVE HER YET
AND WE'LL HAVE HER INTRODUCE
HERSELF AT A LATER POINT.
I WANT TO CONGRATULATE COMMITTEE
MEMBERS ON THE ACCOMPLISH MANIES
WE HAVE TO SHARE.
DR. TAYLOR HAS BEEN APPOINTED AS
THE CO-DIRECT OF THE
VANDERBILT-KENNEDY CENTER
UNIVERSITY CENTER FOR EXCELLENCE
IN DEVELOPMENT DISABILITIES
EDUCATION RESEARCH SERVICE.
CONGRATULATIONS ON THIS
PRESTIGIOUS APPOINTMENT.
AND DR. CRAIG JOHNSON COMPLETED
HIS MASTER'S OF EDUCATION DEGREE
IN SPECIAL POPULATIONS FROM THE
UNIVERSITY OF HOUSTON.
CONGRATULATIONS TO YOU ON THAT
ACHIEVEMENT.
FINALLY, I WANT TO CONGRATULATE
A SORT OF SPILLING THE BEANS
EARLIER SUSAN DANIELS OUR OWN
EXECUTIVE SECRETARY AS YOU KNOW
WAS NAMED NATIONAL AUTISM
CAREERED THIS PAST MAY.
IT'S THE FIRST TAME WE'RE
MEETING SO I WANT TO TAKE A
MOMENT TO CONGRATULATE HER AND
SERVING SINCE JULY OF 2021.
IT TAKES A LONG TIME SOMETIMES
TO GET THINGS DONE IN GOVERNMENT
BUT WE MANAGE TO GET IT DONE.
CONGRATULATIONS ON YOUR
APPOINTMENT ON THIS IMPORTANT
NEW ROLE.
FINALLY IN A MOMENT OF
SELF-CONGRATULATION OR
CONGRATULATION FOR MANY WHO WORK
IN THE BUILDING AND ON THE MAIN
CAMPUS OF NIH, I WANT TO SHARE
THIS IS THE NATIONAL INSTITUTE
OF MENTAL HEALTH'S 75th YEAR
FOUNDED AFTER 1949 WITH THE
RECOGNITION MENTAL ILLNESSES
WERE AFFLICTING MANY AMERICANS
AT THAT TIME ESPECIALLY THOSE
WHO RETURNED FROM WAR.
WE HAVE A FULL YEAR OF EVENTS
PLANNED TO CELEBRATE THE
ACCOMPLISHMENTS AND ACHIEVEMENTS
AND WHAT REMAINS TO BE DONE TO
HELP THOSE WITH MENTAL ILLNESSES
OF ALL SORTS.
I WANT TO COMMEND YOU TO VISIT
OUR WEB PAGE NIH.NIH
NIH.NIH.gov/SEVENTYFIVEYEARS TO
FIND OUT MORE ABOUT THE EVENTS
WE HAVE PLANNED.
TURNING TO TODAY'S AGENDA WE
HAVEFULLY INFORMATIVE AND
HOPEFULLY ENGAGING
PRESENTATIONS.
WE'LL FIRST HEAR FROM THE
DEPARTMENT OF LABOR TO RECOGNIZE
OCTOBER AS NATIONAL DISABILITY
EMPLOYMENT AWARENESS MONTH AND
HEAR AN UPDATE FROM OUR NEWLY
APPOINTED NATIONAL AUTISM
COORDINATOR AND HAVE A ROUND
ROBIN WITH MEMBERS FOLLOWED BY
THE IACC COMMITTEE BUSINESS.
THIS AFTERNOON WE'LL HEAR
PRESENTATIONS ON THE TOPIC OF
MENTAL HEALTH AND AUTISM.
WE'LL HAVE PRESENTATIONS ABOUT
MENTAL HEALTH RESEARCH AS WELL
AS MENTAL HEALTH SERVICES
AVAILABLE FOR INDIVIDUALS WITH
AUTISM WHO FREQUENTLY SUFFER
FROM CO-MORBIDITIES OF A NUMBER
OF DIFFERENT KINDS IN THE MENTAL
HEALTH SPACE.
WE'LL ALSO HEAR FROM A PANEL OF
INDIVIDUALS SHARED THE LIVED AND
PROFESSIONAL EXPERIENCES WITH
MENTAL HEALTH IN THE CONTEXT OF
AUTISM.
YESTERDAY OCTOBER 10 WAS WORLD
MENTAL HEALTH DAY AND MY
DAUGHTER'S BIRTHDAY.
WE SHARE THE GOAL -- WORLD
MENTAL HEALTH DAY IS DESIGNATED
BY THE WORLD HEALTH ORGANIZATION
AND WE SHARE THEIR GOAL OF
IMPROVING KNOWLEDGE, RAISING
AWARENESS AND DRIVING ACTION
THAT PROMOTE AND PROTECT
EVERYONE'S MENTAL HEALTH.
I THINK IT'S SUITABLE TODAY IN
THE AFTERNOON WE'LL FOCUS ON THE
MENTAL HEALTH OF INDIVIDUALS
WITH AUTISM.
THAT'S IN WAY OF INTRODUCING THE
MEETING.
WELCOME EVERYONE AND TURN TO
SUSAN FOR OPENING REMARKS, ROLL
CALL, ETCETERA.
SUSAN.
>> THANK YOU SO MUCH.
IT'S REALLY EXCITING TO WELCOME
YOU IN PERSON TO THIS MEETING.
IT'S BEEN A COUPLE YEARS SINCE
THE IACC HAS BEEN ABLE TO MEET
IN PERSON AND IT'S THE FIRST
TIME FOR THIS PARTICULAR GROUP
TO BE MEETING IN PERSON AND WE
HAVE PEOPLE VIRTUALLY ON ZOOM
PARTICIPATING AND WELCOME TO OUR
PUBLIC AUDIENCE.
WE'RE EXCITED TO BE HERE AND
RECOGNIZING THE IMPORTANT TOPIC
OF MENTAL HEALTH AND WE'LL TALK
ABOUT NATIONAL DISABILITY
EMPLOYMENT AWARENESS MONTH BE
ADDRESSED BY THE U.S. DEPARTMENT
OF LABOR TODAY.
I'M GOING TO MAKE A FEW
HOUSEKEEPING ANNOUNCEMENTS FOR
PEOPLE WHO ARE ON ZOOM WE
ENCOURAGE YOU TO PARTICIPATE IN
THE MEETING.
PLEASE RAISE YOUR HAND IN ZOOM.
WE HAVE PEOPLE FROM OUR TEAM
WATCHING THE ZOOM CHANNEL AND
THEY'LL LET US KNOW WHEN
SOMEBODY WANTS TO SPEAK.
WE ALSO WELCOME YOU TO PUT IN
THE MESSAGE TO SEND COMMENTS
HERE AS THE TITLE AND I'LL DUST
STAFF AT THE TABLE AND I HAVE
HELP WITH ZOOM AND KEEPING TRAM
OF CERTAIN THINGS IN THE MEETING
AND STEVEN ISAACSON WHO WILL
READ ALOUD ANY COMMENTS IN THE
CHAT.
BEHIND ME ON BOTH SIDES ARE THE
OFFICE OF NATIONAL AUTISM
COORDINATION STAFF AND THEY ARE
BEHIND THE SCENES HELPING TO
MAKE SURE THIS MEETING GOES
SMOOTHLY AS WELL AS OUR
CONTRACTOR ROSE LEE AND
ASSOCIATES AND THE NIH TEAM
HERE.
I WILL TAKE A ROLL CALL SO THOSE
WATCHING THROUGH NIH VIDEOCAST
WILL KNOW WHO'S HERE.
FIRST JOSHUA GORDON.
>> HERE.
>> DI AN BIANCHI OR AMANDA
COWELL.
>> HERE.
>> MITCHELL BERGER OR ANITA
EVERETT.
>> MITCHELL BURGER.
>> TIFFANY FARCHIONE.
>> FOOD AND DRUG ADMINISTRATION.
>> THANK YOU MARIA FRYER.
?
I THINK SHE'LL JOIN LATER.
>> REBECCA ZUBAL FROM EPA I
THINK WILL JOIN LATER.
>> JENNIFER JOHNSON.
>> HERE.
>> FROM THE ADMINISTRATION FROM
COMMUNITY LIVING.
>> CHRISTINA HARDY.
>> I'M HERE.
>> FROM THE INSTITUTE OF
NATIONAL OF HEALTH.
>> LEAH LOZIER.
>>
>> HERE.
>> ALISON MARVIN.
>> HERE FROM SSA.
>> MATTHEW MILLER OR SCOTT
PATTERSON FROM THE VETERANS
ADMINISTRATION?
>> KAMIL MYSTERY OR JUSTIN MILLS
FROM AAARQ.
>> STEWARD SHEER RA.
>> HERE.
>> ROBIN SHILLHOP FROM HRSA AND
CHP.
>> THANK YOU.
BARBARA ROLLAND.
>> I'M THE MENTAL HEALTH BRANCH
CHIEF FOR THE DEPARTMENT OF
BEHAVIORAL HEALTH AT IHS.
THANK YOU.
>> WELCOME TO THE COMMITTEE,
BARBARA.
GLAD TO HAVE YOU ON BOARD.
>> THANK YOU.
>> YES, WELCOME.
JODY SUMERAKI FROM CENTERS FOR
MEDICAID AND MEDICARE SERVICES?
DR. JAMES SIMMONE.
WELCOME.
REPRESENTING THE NIH OFFICE OF
THE DIRECTOR.
JUDE IN COOPER.
-- JUDITH COOPER.
>> GOOD MORNING PRESENT AND
REPRESENTING OUR DIRECTOR OF THE
NATIONAL INSTITUTE ON DEAFNESS
AND OTHER COMMUNICATION
DISORDERS DEB TUCCI IS AWAY.
>> THANK YOU.
LARRY WEXLER.
>> HERE.
>> FROM THE DEPARTMENT OF
EDUCATION.
NICOLE WILLIAMS.
>> I'M WITH THE AUTISM RESEARCH
PROGRAM.
>> AT THE DEPARTMENT OF DEFENSE.
>> TARYN MACKENZIE WILLIAMS OR
SCOTT ROBERTSON OR ANIF ACGESE.
>> HERE.
>> THANK YOU.
>> AND FOR THE REST OF THE
MEETING AFTER ANUPA'S REMARKS
THIS IS SCOTT FROM THE OFFICE OF
DISABILITY AND EMPLOYMENT
POLICY.
>> U.S. DEPARTMENT OF LABOR
WE'RE LOOKING FORWARD TO HEARING
FROM YOU LATER.
>> RICHARD WOYCHIK OR CINDY
LAWLER.
>> THIS IS CINDY, ALTERNATE FOR
RICK WOYCHIK NATIONAL INSTITUTE
OF ENVIRONMENTAL HEALTH
SCIENCES.
>> MARIA MERCEDES AVILA?
ALEX CARTER.
>> HERE.
>> THANK YOU.
DO YOU WANT TO SAY WHERE YOUR
FROM?
>> UNIVERSITY OF MASSACHUSETTS
DEPARTMENT OF PSYCHOLOGY.
>> AISHA DICKERSON.
>> HERE FROM JOHNS HOPKINS
DEPARTMENT OF EPIDEMIOLOGY.
>> THOMAS FRAZIER.
>> HERE.
>> DENA GASNER.
>> SHE DIDN'T MAKE THE ROUND
ROBIN BUT MY DISSERTATION
DEFENSE WAS ACCEPTED.
>> CONGRATULATIONS.
>> YES, CONGRATULATIONS,
DR. GASNER.
>> MORENIKE GIWA ONAIWU.
>> ALYCIS HALLADAY.
>> ONLY A CERTAIN NUMBER CAN BE
ON AT ONCE SO BE SURE TO TURN
YOURS OFF AFTER.
>> CRAIG JOHNSON.
>> I'M FROM CHANCE FOUNDATION
FOR SPECIAL NEEDS INDIVIDUALS
AND FAMILIES.
>> THANK YOU.
YETTA MYRICK.
>> I'M FROM D.C. AUTISM PARENTS
AND I'M ALSO A PARENT.
>> THANK YOU.
LINDSEY NEBEKER.
>> GOOD MORNING.
I'M HERE.
>> THANK YOU.
>> JEPPY MAI PHAN.
>> GOOD MORNING I'M HERE.
>> DO YOU WANT TO SAY WHERE
YOU'RE FROM?
>> HI, SELF-ADVOCATE AND MOTHER
OF FOUR AND RESEARCHER AT
NATIONAL CHILDREN'S HOSPITAL.
>> JALYNN PRINCE.
>> A PARENT AND WORK WITH THE
MADISON HOUSE FOUNDATION TO LOOK
AT THE ISSUES COLLECTIVELY AND
TRYING TO COORDINATE MANY OF
THOSE THINGS.
>> CAMILLE PROCTOR.
SUSAN RIVERA.
>> GOOD MORNING.
PRESENT AND I'M FROM THE
UNIVERSITY OF MARYLAND.
>> THANK YOU.
MATTHEW SIEGEL.
>> GOOD MORNING.
TUFT'S UNIVERSITY AND MAINE
MEDICAL CENTER.
>> IVANOVA SMITH.
>> I LIVE IN WASHINGTON STATE
AND I'M A SELF-ADVOCATE PUBLIC
MEMBER.
>> THANK YOU.
HARI SRINIVASAN.
>> HE'S HAVING POWER ISSUES AT
HIS HOUSE AND WILL HOPEFULLY BE
ON IN ABOUT HALF AN HOUR AFTER
HE XHUTS TO COLLEGE -- COMMUTES
TO COLLEGE.
>> GOOD MORNING.
HEL EN TAGER-FLUSBERG.
>> AND JULIE TAYLOR IS NOT HERE
BECAUSE I BELIEVE SHE HAS A
MEETING THIS MORNING BUT SHE'LL
BE CATCHING UP WITH US LATER.
>> PAUL WANG FROM THE SIMONS
FOUNDATION.
PUBLIC MEMBER.
>> MORENIKE IS ONLINE.
>> WOULD YOU LIKE TO SAY HELLO?
>> THANKS FOR ATTENDING.
I KNOW YOU LIKE TO COMMUNICATE
VIA CHAT AND WE LOOK FORWARD TO
YOUR COMMUNICATION.
>> WE WELCOME YOU ALL AND THAT
COMPLETES ROLL CALL.
IF YOU'RE TOWARD THE END OF THE
TABLE AND SEE OPEN SEATS ARE
EMPTY I'M NOT SURE IF THOSE
FOLKS ARE COMING FEEL FREE TO
SWAP IN CLOSER IF YOU WISH OR
STAY WHERE YOU ARE.
THAT CONCLUDES OUR ROLL CALL AND
I'LL TURN OUR ATTENTION TO THE
LAST MEETING FROM APRIL 2023.
YOU ALL RECEIVED A COPY OF THE
DRAFT MINUTES AND WE POSTED THEM
ONLINE IN THE MEETING MATERIALS.
AND I WANTED TO SEE AT THIS
MOMENT DOES ANYONE HAVE ANY
CONCERNS ABOUT THE MINUTES OR
ANYTHING THAT YOU THOUGHT NEEDED
TO BE CORRECTED IN THE MINUTES?
NOT SEEING ANY CAN I GET A
MOTION ON THE FLOOR TO ACCEPT
THE MINUTES?
>> I'LL PUT A MOTION ON THE
FLOOR.
>> A SECOND?
ALL IN FAVOR OF ACCEPTING THE
MINUTES?
YOU CAN PHYSICALLY RAISE YOUR
HAND IF YOU'D LIKE AND RAISE
YOUR HAND ON ZOOM.
ANYONE OPPOSED OR ABSTAINING.
WE'LL GET THOSE POSTED AFTER THE
MEETING AND SINCE THERE'S NO
CHANGES IT'S EXACTLY THE SAME AS
THE WEBSITE.
I'D LIKE TO REMIND EVERYONE THAT
IS JOINING US ONLINE OR EVEN
HERE IN THE AUDIENCE OR AT THE
TABLE ALL THE MATERIALS FOR THE
MEETING ARE ONLINE ON THE IACC
WEBSITE.
NAVIGATE TO THE MEETINGS TAB AND
GO TO THE MEETING HAPPENING THIS
DATE AND THERE'S A WHOLE LONG
PAGE WITH EVERYTHING YOU NEED
FOR THE MEETING AND ACCESS TO
ALL THE PDFs AND INFORMATION
ABOUT OUR SPEAKERS, OUR BIOS AND
ALL THAT.
YOU CAN ACCESS THAT ALL ONLINE
AND FEEL FREE TO FIND THAT.
SO WITH THAT, I'M GOING TO TURN
IT BACK OVER TO DR. GORDON.
>> THANK YOU.
IT'S MY PLEASURE TO INTRODUCE
MS. ANUPA GEEVARGHESE AT THE
U.S. DEPARTMENT OF LABOR.
SHE'LL SHARE SOME WORDS WITH US
AND SORRY IF I MISPRONOUNCED
THAT.
GEEVARGHESE.
THANK YOU FOR COMING TO US TODAY
AND FOR GIVING US AN UPDATE ON
EMPLOYMENT AWARENESS FOR
DISABILITY.
>> THANK YOU.
MY NAME IS ANUPA GEEVARGHESE.
I'M A BROWN WOMAN WITH BLACK
BANGS WEARING A SILVER NECKLACE
AND BLUE ADDRESS AND BEHIND ME
IS THE BACKGROUND FOR THIS
YEAR'S SERIES OF MULTI-COLORED
ARROWS AND PEOPLE WITH VARIOUS
DISABILITIES SMILING IN BOX AND
THE WORDS ADVANCING ACCESS AND
EQUITY.
I AM THE CHIEF OF STAFF FOR THE
OFFICE OF DISABILITY EMPLOYMENT
POLICY AT THE DEPARTMENT OF
LABOR.
AND I WANT TO START MY REMARKS
BY THANKING DR. GORDON AND
DR. DANIELS AND MEMBERS OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE FOR INVITING ME TO
SPEAK TODAY ON BEHALF OF
ASSISTANT SECRETARY WILLIAMS.
FOR THOSE NOT FAMILIAR, ODAP IS
THE ONLY NON-REGULATORY FEDERAL
AGENCY THAT PROMOTES POLICIES
AND COORDINATES WITH EMPLOYERS
AT ALL LEVELS OF GOVERNMENT TO
INCREASE WORKPLACE SUCCESS FOR
PEOPLE WITH DISABILITIES.
OUR MISSION IS TO DEVELOP AND
INFLUENCE POLICIES AND PRACTICES
THAT INCREASE THE NUMBER AND I
MUST STRESS THE QUALITY OF
EMPLOYMENT OPPORTUNITIES FOR
PEOPLE WITH DISABILITIES.
ODAP IS WORKING EVERY DAY TO
IMPROVE ACCESS AND OPPORTUNITIES
AND WORKFORCE INCLUSION WITH
POLICY CHANGE, RESEARCH OUTREACH
AND TECHNICAL ASSISTANCE.
PART OF OUR WORK IS TO PROMO PR
AWARENESS OF INCLUSIVE
WORKPLACES.
I'M EXCITED TO PROMOTE NATIONAL
DISABILITY EMPLOYMENT AWARENESS
MONTH OR NDE.
WE INCLUDED WORKERS WITH
DISABILITIES IN OCTOBER SINCE
1945 WHEN CONGRESS ESTABLISHED A
WEEK LONG CELEBRATION THAT YEAR
AND GAVE RISE TO OUR EMPLOYMENT
AWARENESS MONTH IN 1988.
THIS YEAR'S THEME OF ADVANCING
ACCESS AND EQUITY BUILDS ON OUR
THEME COMMEMORATING THE 50th
ANNIVERSARY OF THE
REHABILITATION ACT OF 1973
ADVANCING ACCESS AND EQUITY,
THEN, NOW AND NEXT.
SO, IT WAS THE FIRST PIECE OF
LEGISLATION THAT GUARANTEED
ACCESS AND EQUITY FOR PEOPLE
WITH DISABILITIES.
THIS YEAR'S THEME ALSO MATCHING
THE IACC'S EMPHASIS ON SUPPORT
FOR EQUITY, INCLUSION AND
ACCESSIBILITY IN THE RECENTLY
RELEASED STRATEGIC PLAN.
I'M PROUD OF THE HISTORIC
COMMITMENT THE BIDEN HARRIS
ADMINISTRATION HAS TOWARDS I AM
PROVING ACCESSIBILITY FOR JOB
SEEKERS AND WORKERS INCLUDING
PEOPLE WITH DISABILITIES.
WHEN PRESIDENT BIDEN ISSUED
EXECUTIVE ORDER 14035 ON
DIVERSITY, EQUITY, INCLUSION
ACCESSIBILITY IN THE FEDERAL
WORKPLACE IT WAS THE FIRST TIME
THE BROADER DEI EFFORTS
EMPHASIZED DISABILITIES BY
ADDING THE A FOR ACCESSIBLE.
WE HAVE PRIORITIZED OUR
COMMITMENT TO DEIA TO ENSURE THE
HIST
HISTORIC INVESTING OF AMERICA
CREATES GOOD JOBS FOR WORKERS
WITH DISABILITIES INCLUDING
NEURODIVERSE.
WE RECOGNIZE PEOPLE
NEURODIVERGENT AND ON THE AUTISM
SPECTRUM FACE MAJOR WORK
BARRIERS AND FIND IT CHALLENGING
TO MAH GAIN AND MAINTAIN JOBS TO
FIT THEIR STRENGTH, TALENT,
SKILLS AND INTERESTS.
MANY AUTISTIC PEOPLE REMAIN
UNDER EMPLOYED AND CANNOT ACCESS
NODED WORK ACCOMMODATIONS AND --
NEEDED ACCOMMODATIONS FOR JOB
AND CAREER SUCCESS.
ODEF EMPLOYER ASSISTANCE WORKS
TO ADDRESS THE ISSUES IN ITS
WORK AS OUR POLICY DEVELOPMENT
AND TECHNICAL ASSISTANCE CENTER
FOR EMPLOYERS.
FOR INSTANCE, THE WEBSITE OFFERS
A GUIDE TO NEURODIVERSITY IN THE
WORK PLIS FOR EMPLOYERS.
THIS GUIDE HIGHLIGHTS OUR
ORGANIZATIONAL EMPLOYEE BENEFITS
FOR NOOURS DIVERSITY AT WORK AND
PRACTICES FOR MANAGEMENT,
MENTORING AND PEER TRAINING.
IT ALSO DESCRIBES HIRING AND
RECRUITMENT PROGRAMS FOR
NEURODIVERSITY AT WORK IN THE
FEDERAL GOVERNMENT AND PRIVATE
SECTOR.
ANOTHER SECTOR THE JOB
ACCOMMODATION NETWORK WORKS WITH
SERVICE PROVIDERS AND FREE
CONFIDENTIAL AND EXPERT GUIDANCE
ON WORK ACCOMMODATIONS.
THE WEBSITE FEATURES AN OF TO C
GUIDE ON WORK ACCOMMODATIONS AND
THIS INCLUDES A DEDICATED PAGE
ON NEURODIVERSITY AS WELL AS
SPECIAL SPECIFIC DISABILITIES
SUCH AS AUTISM, INTELLECTUAL AND
MENTAL HEALTH MEASURES.
IN APRIL, THERE WAS A WEBINAR ON
ACCOMMODATION SOLUTIONS FOR
NEURODIVERGENT WORKERS AND IT'S
ARCHIVED ONLINE.
AND YOUNG ADULTS ON THE AUTISM
SPECTRUM ALSO CONTINUES TO
INVESTIGATE KEY ISSUES TO
IMPROVE ACCESS TO JOBS AND
CAREERS AND ADDRESS BARRIERS
IMPACTING YOUNG ADULTS ON THE
AUTISM SPECTRUM.
IN APRIL THE REPORT ON THE USE
OF FEDERALLY AND STATE FUNDED
VOCATIONAL REHABILITATION
SERVICES BY YOUNG ADULTS.
THE WEBSITE CONTAINS A REPORT
FROM PRIOR LISTENING SECTIONS
AND LITERATURE REVIEWS ON
PROGRAMS, MODELS AND STRATEGIES
AND EVIDENCE BASED AND
EFFECTIVENESS.
THE ACTIVITIES TO HELP SUPPORT
PEOPLE WITH MENTAL HEALTH
CONDITIONS ALSO PLAY A CRUCIAL
ROLE IN OUR OVER ALL ENGAGEMENT
TO FOSTER NEURODIVERSITY AT WORK
AND WE'RE DELIGHTED IACC IS
HOSTING SESSIONS ON MENTAL
HEALTH NEEDS OF AUTISTIC PEOPLE
THIS AFTERNOON.
IN MAY, THE DEPARTMENT OF LABOR
LAUNCHED A WEB PAGE WITH
RESOURCES TO HELP CULTIVATE
MENTAL HEALTH WORKPLACES AND
THERE'S A WORKPLACE MENTAL
HEALTH TOOL KIT FOR EMPLOYERS
YOU CAN FIND ALSO AT THE WEBSITE
ASK EARN.org.
THE TOOL KIT SHARES RESOURCES
AND INFORMATION TO SUPPORT THE
MENTAL HEALTH AND WELL-BEING OF
ALL WORKERS AND DESCRIBES
STRATEGIES FOR CREATING A MENTAL
HEALTH FRIENDLY WORKPLACE AND
CULTURE SUCH ADDS PROVIDING
ASSISTANCE TO EMPLOYEES AND
ENSURING ACCESS TO NEEDED WORK
ACCOMMODATIONS AND SUPPORTS.
THE PROJECT ON ADVANCING STATE
POLICY INTEGRATION FOR RECOVERY
AND EMPLOYMENT OR ASPIRE ALSO
ADVANCES EMPLOYMENT ACCESS FOR
PEOPLE WITH MENTAL HEALTH
CONDITIONS.
THIS OCTOBER I ENCOURAGE YOU TO
HELP PROMOTE INCLUSIVE ACCESS TO
EMPLOYMENT AND CAREER PATHWAYS
FOR PEOPLE WITH DISABILITIES BY
HOSTING EVENTS AND REMEMBER IT'S
NOT JUST OCTOBER IT CAN BE EVERY
SINGLE DAY SO PLEASE VISIT THE
WEB PAGE FOR INFORMATION AT
DOL.GOV/AGENCY/INITIATIVES/ND.
TO DOWNLOAD THE POSTER IN
ENGLISH AND SPANISH YOU CAN ALSO
WATCH A GREAT VIDEO
COMMEMORATING AND FIND
RESOURCES.
THANK YOU ALL FOR SUPPORTING
INCLUSIVE EMPLOYMENT AND CAREERS
FOR PEOPLE WITH DISABILITIES
INCLUDING AUTISTIC PEOPLE TO
HELP IMPROVE ECONOMIC WELL-BEING
AND QUALITY OF LIFE.
THANK YOU SO MUCH.
>> WE HAVE A WEB PAGE DEVOTED TO
ENDING RESOURCES YOU CAN FIND ON
THE IACC WEBSITE.
I KNOW ON OUR WEBSITE TODAY WE
HAVE SOME RESOURCES LISTED AND
IF THERE'S ADDITIONAL ONES WE
CAN ADD THAT ON.
THANK YOU SO MUCH FOR BEING WITH
US TODAY.
I HEARD MATTHEW MILLER IS ON FOR
THE VETERAN'S ADMINISTRATION.
>> THIS IS SAM CRANE AS A PUBLIC
MEMBER NOW ON.
>> THANK YOU.
ANYBODY ELSE WHO JOINED LATE AND
MISSED THE ROLL CALL THAT WANTS
TO SAY HELLO?
ALL RIGHT, THEN.
THANK YOU SO MUCH.
WE'LL MOVE ON NOW TO THE
NATIONAL AUTISM COORDINATOR
UPDATE AND I HAVE A FEW UPDATES
TO SHARE WITH YOU.
THIS IS JUST REPEATING THE
NATIONAL AUTISM COORDINATOR HAS
BEEN APPOINTED AND THERE'S
INFORMATION ON THE SLIDE FOR
PEOPLE WHO MAY NOT BE ABLE TO
JOIN THE MEETING.
SO I'M GOING TO GIVE YOU AN
OVERVIEW OF SOME DIFFERENT
UPDATES INCLUDING UPDATES FROM
THE WHITE HOUSE, FEDERAL
COMMITTEES, FEDERAL DEPARTMENTS
AND AGENCIES AND
NON-GOVERNMENTAL AGENCIES AND
ORGANIZATIONS.
SO FOR THE WHITE HOUSE,
PRESIDENT BIDEN ISSUED SEVERAL
PROCLAMATIONS SINCE THE LAST
MEETING AND STATEMENTS AND A
WANTED TO POINT YOU TO THOSE AND
WE HAVE LINKS IN THE SLIDE SET
FOR THOSE WHO WANT TO ACCESS
THEM.
FIRST WAS THE PROCLAMATION FOR
NATIONAL DISABILITY EMPLOYMENT
AWARENESS MONTH THAT JUST CAME
OUT.
THERE WAS ALSO A STATEMENT FROM
THE PRESIDENT ABOUT THE 50th
ANNIVERSARY OF THE
REHABILITATION ACT AND THEY HAD
A WONDERFUL EVENT UP AT THE
WHITE HOUSE AND PROCLAMATION ON
THE ANNIVERSARY ON THE AMERICANS
WITH DISABILITIES AC THIS SUMMER
IN JULY.
-- ACT THIS SUMMER IN JULY.
PRESIDENT BIDEN ALSO ANNOUNCED
HIS INTENT TO NOMINATE
DR. BERTAGNOLLI FROM THE
NATIONAL CANCER INSTITUTE AND
HELP SHE'LL BE ABLE TO JOIN THE
IACC AND SAY A FEW WORDS.
I'LL GIVE A FEW FEDERAL
COMMITTEE UPDATES.
FIRST, THE INTERAGENCY COMMITTEE
ON DISABILITY RESEARCH WHICH IS
MANAGED BY THE ADMINISTRATION
FOR COMMUNITY LIVING HAD SEVERAL
DIFFERENT RECENT ACTIVITIES
INCLUDING CULTURAL COMPETENCE IN
HEALTH CARE.
HOW DOES COVID-19 RECESSION
IMPACT PEOPLE WITH DISABILITIES
ACROSS AMERICA.
EMERGENCY PREPAREDNESS AND THE
IMPACT OF CLIMATE CHANGE ON
PEOPLE WITH DISABILITIES.
DISPARITIES IN HEALTH CARE WITH
DUAL ELIGIBILITY AND
PARTICIPATORY ACTION WITH PEOPLE
WITH DISABILITIES AND THERE WAS
A STAKEHOLDER MEETING IN JUNE
AND THERE'S MORE INFORMATION ON
THE WEBSITE AND A SUMMARY
AVAILABLE FOR THE FEBRUARY 2023
STATE OF THE SCIENCE CONFERENCE
ON DISABILITY STATISTICS.
AN UPDATE FROM THE RAISE FAMILY
CAREGIVING ADVISORY COUNCIL.
THEY MET IN JULY 2023 AND HAD A
JOINT KICKOFF MEETING FOR THE
NEW COUNCIL THAT'S BEEN
APPOINTED AND MET JOINTLY WITH
THE ADVISORY COUNCIL TO SUPPORT
GRANDPARENTS RAISING GRAND
CHILDREN.
THEY FOCUSSED ON COMMENTS AND
NATIONAL STRATEGIES TO SUPPORT
CAREGIVERS.
THE NATIONAL COUNCIL ON
DISABILITY A FEDERAL AGENCY
DEVOTED TO DISABILITY ISSUES HAD
A RECENT NCB COUNCIL MEETING IN
NOVEMBER THEY HAVE ONE THAT WILL
BE FOCUSSED ON HOUSING AND
TRANSPORTATION AND HAVE A
QUARTERLY MEETING AND ADA EVENT
THAT'S RECORDED IF YOU WANT TO
WATCH AND A NEW REPORT ON THE
IMPACTS OF EXTREME WEATHER WITH
PEOPLE WITH DISABILITIES POSTED
ON THE IACC WEBSITE IN CASE
ANYONE WANTS TO ACCESS.
WE HAVE A SECTION ON DISABILITY
REPORTS AS WELL AS A SECTION ON
SPECIFIC AUTISM REPORTS ON THE
WEBSITE.
THE FEDERAL PARTNERS IN
TRANSITION A VOLUNTARY ALL
FEDERAL WORKING GROUP MANAGED BY
THE U.S. DEPARTMENT OF LABOR
FOCUSES ON TRANSITION AGE YOUTH
PEOPLE WITH ISSUES OR
DISABILITIES.
THEIR RECENT ACTIVITIES INCLUDE
A RECENT STEERING COMMITTEE AND
GENERAL MEETING AND CONTINUING
TO WORK ON A STRATEGIC PLAN TO
ADDRESS ISSUES WITH YOUTH WITH
DISABILITIES.
THE INTERDEPARTMENTAL SERIOUS
ILLNESS COORDINATING COMMITTEE
MANAGED BY THE SERVICES
ADMINISTRATION HAVE A MEETING
UPCOMING OCTOBER 18 AND WE'VE
PROVIDED THE INFORMATION HERE IF
ANYONE WANTS TO ACCESS THAT
MEETING.
THE ADVISORY COMMITTEE OF THE
FEDERAL COMMUNICATIONS
COMMISSION HAD A SEPTEMBER 2023
COMMITTEE MEETING AND WE
PROVIDED A LINK TO THE VIDEO IN
THE AGENDA AND THE TOPICS THEY
COVERED AND A.I. RIGHTS AND
AUDIO DESCRIPTIONS.
THE PEOPLE WITH DISABILITIES
MARCHED BY THE COMMITTEE FOR
COMMUNITY LIVING LOOKS AT HOME
AND COMMUNITY-BASED SERVICES
INCLUDING THE SHORTAGE IN
DIRECT-SUPPORT PROFESSIONALS AND
THE NEEDS FOR EMPLOYMENT AND
COMMUNITY LIVING SERVICES AND
YOU CAN ACCESS THE RECORDING ON
THE LINK THAT'S ON THE SLIDE AND
ALL THE SLIDES WILL BE POSTED
AFTER THE MEETING SO PEOPLE CAN
ACCESS THEM.
THE NATIONAL ADVISORY COMMITTEE
AS MANAGED BY THE DEPARTMENT OF
HEALTH AND HUMAN SERVICES
ADMINISTRATION FOR STRATEGIC
PREPAREDNESS AND RESPONSE HAD A
MEETING IN SEPTEMBER 2023.
IT WAS A JOINT PUBLIC MEETING
WITH THE NATIONAL ADVISORY
COMMITTEE ON SENIORS AND
DISASTER TO DISCUSS RESPECTIVE
REPORTS AND THEY'RE AVAILABLE
LINKS PROVIDED THERE.
THE COORDINATING COUNCIL ON
ACCESS AND MOBILITY.
THIS IS MANAGED BY THE FEDERAL
TRANSIT DEPARTMENT AND
DEPARTMENT OF TRANSPORTATION AND
INCLUDED A OCTOBER 2022 MEETING
AND APPRESSED A NEW STRATEGIC
PLAN.
I BELIEVE THAT'S POSTED ON OUR
WEBSITE AS WELL.
IF NOT WE'LL POST IT SHORTLY AND
IT WILL BE AVAILABLE FOR YOU AND
IN NOVEMBER 2022 THEY HAVE AN
UPCOMING WEBINAR TO TALK ABOUT
THE STRATEGIC PLAN IF I WANT TO
LEARN ABOUT ITS CONSENT.
THE INTERAGENCY TASK ON
TRAUMA-INFORMED CARE BY SAMHSA
AND TALKS ABOUT FAMILIES
IMPACTED BY SUBSTANCE USE
DISORDERS AND OTHER FORM OF
TRAUMA.
AND THEN I WILL MOVE INTO SOME
FEDERAL AGENCY UPDATES.
WITH THE PURPOSE OF SHARING ALL
OF THAT WITH YOU AS A FEDERAL
ADVISORY COMMITTEE WE DON'T WANT
TO BE DUPLICATIVE AND THERE'S
LOTS OF FEDERAL COMMITTEES AND
MANY RELATED TO DISABILITIES.
IT'S IMPORTANT TO BE AWARE OF
THAT AND WE WANT TO BE
COORDINATING AND COMPLIMENTING
THE EFFORTS OF OTHER AGENCIES,
FEDERAL ADVISORY COMMITTEES.
I'M HAVING TROUBLE ADVANCING
SLIDES.
AN IMPORTANT ANNOUNCEMENT THAT
HAS TAKEN PLACE AT NIH IS THAT
NIH DESIGNATED PEOPLE WITH
DISABILITIES AS A POPULATION
WITH HEALTH DISPARITIES.
THIS WAS A VERY IMPORTANT
DECISION THAT WAS MADE IN
SEPTEMBER 2023 BY THE NATIONAL
INSTITUTES OF HEALTH AND THE
NATIONAL INSTITUTE OF MINORITY
HEALTH AND HEALTH DISPARITIES.
THIS MEANS PEOPLE WITH
DISABILITIES HAVE BEEN
DESIGNATED AS A POPULATION WITH
HEALTH DISPARITIES TO ENABLE
WORK ON THESE ISSUES AND THERE
WAS A CALLING FOR RESEARCH
APPLICATIONS FOCUSSED
INTERSECTING IMPACT OF
DISABILITY, RACE AND ETHNICITY
AND SOCIO ECONOMIC STATUS ON
HEALTH CARE ACCESS AND HEALTH
OUTCOME.
SO IN ADDITION, THE NIH ISSUED A
REQUEST FOR INFORMATION THIS IS
LIKE A REQUEST FOR PUBLIC
COMMENTS ON A PROPOSED UPDATE TO
THE NIH MISSION STATEMENT AND
THE DEADLINE FOR THOSE COMMENTS
IS NOVEMBER 24.
I'D ENCOURAGE THE COMMITTEE TO
LOOK AT THAT AND ANYONE IN THE
LISTENING AUDIENCE WHO IS
INTERESTED IN THE NIH MISSION
STATEMENT AND THE FOLLOWING
CHANGE IS PROPOSED.
THEY WANT TO CHANGE IT TO SEEK
FUNDAMENTAL -- SORRY, THE OLD
ONE IS TO SEEK FUNDAMENTAL
KNOWLEDGE ABOUT THE NATURE AND
BEHAVIOR OF LIVING SYSTEMS AND
THE APPLICATION OF THAT
KNOWLEDGE TO ENHANCE HEALTH,
LIFE AND REDUCE DISABILITY AND
SEEK FUNDAMENTAL KNOWLEDGE ABOUT
THE NATURE AND BEHAVIOR OF
LIVING SYSTEMS AND APPLY THAT
KNOWLEDGE TO OPTIMIZE HEALTH AND
PREVENT OR REDUCE ILLNESS FOR
ALL PEOPLE.
THE ACTING DIRECTOR OF NIH
DR. LARRY TABAK POSTED A BLOG
ABOUT THIS AND WE HAVE A LINK TO
THE BLOG THERE BUT I'D ENCOURAGE
ANYONE INTERESTED TO CHECK OUT
THAT REQUEST FOR INFORMATION AND
SUBMIT YOUR COMMENTS.
IN ADDITION THE IDD NATIONAL
SUMMIT REPORT HIGHLIGHTS HOW
DATA AS AN EQUITY ISSUE AND THIS
IS IN NOVEMBER 2022 THE ACL
INITIATIVE ORGANIZED NATIONAL
SUMMIT AND THERE'S A REPORT YOU
CAN READ ABOUT THE OUTCOMES FOR
THAT.
IN ADDITION, HHS ISSUED A NEW
PROPOSED RULE TO STRENGTHEN
PROHIBITIONS ON THE BASIS OF
HUMAN SERVICES PROGRAMS.
THIS WAS AN ANNOUNCEMENT OF THE
BIDEN-HARRIS ADMINISTRATION.
IT'S A PART OF THE 50th
ANNIVERSARY OF THE
REHABILITATION ACT AND THE
OFFICE OF CIVIL RIGHTS ANNOUNCED
A PROPOSED RULE TO PREVENT
DISCRIMINATION ON THE BASIS OF
DISABILITY AND ANY HHS FUNDED
HEALTH CARE AND HUMAN SERVICES
PROGRAMS.
WE HAVE A LINK TO THE RELEASE
THERE FOR THAT.
IN ADDITION, THE CENTERS FOR
MEDICARE AND MEDICAID SERVICES
HAVE TAKEN ACTION TO PROTECT
HEALTH CARE COVERAGE FOR
CHILDREN AND FAMILIES AND WE'RE
SUCCESSFULLY ABLE TO ENCOURAGE
STATES TO MAKE SURE THAT
INDIVIDUALS WHO MAY HAVE BEEN
INADVERTENTLY DISENROLLED FROM
MEDICAID FOR THE CHILDREN'S
HEALTH INSURANCE PROGRAM AND
REINSTATE AND TO DATE NEARLY
HALF A MILLION CHILDREN AND
FAMILIES FROM 30 STATES WILL BE
REGAINING THEIR COVERAGE.
THE PRESS RELEASE IS LINKED
THERE.
THE U.S. DEPARTMENT OF JUSTICE
PROPOSED A RULE TO STRENGTHEN
WEB ACCESS FOR PEOPLE WITH
DISABILITIES.
THERE'S A FEDERAL REGISTER
NOTICE ON THE PROPOSED RULE
INVITING PUBLIC COMMENT JUST
ENDED OCTOBER 3.
THE RULE IS IN PROCESS.
TALK ABOUT SOME NON-GOVERNMENTAL
ACTIVITIES.
THE PAST JUNE THERE WAS A RECENT
CONFERENCE TO THE 16th SESSION
OF THE CONFERENCE OF STATE'S
PARTIES TO THE CONVENTION ON
RIGHTS TO PERSONS WITH
DISABILITIES AT THE UNITED
NATIONS IN NEW YORK AND I WAS
ABLE TO BE APART OF THIS EVENT
THAT WAS SPONSORED BY THE AUTISM
ALLIANCE OF CANADA AND IT WAS AN
AUTISM FOCUSSED EVENT CALLED
CHALLENGES, BEST PRACTICES AND
AWAY FORWARD LOOKING AT NATIONAL
AUTISM STRATEGIES THROUGH THE
LENS OF THE CRPD.
THEY HAD REPRESENTATIVES OF A
NUMBER OF COUNTRIES THAT SHARED
WHAT THEY'RE DOING TO DEVELOP
NATIONAL AUTISM STRATEGIES FOR
THEIR POPULATIONS AND HOW THOSE
ALIGN WITH THE CRPD AND
PROTECTION OF HUMAN RIGHTS FOR
PEOPLE WITH DISABILITIES AND I
WAS ABLE TO SPEAK ON THE IACC
STRATEGIC PLAN AND OURS IS THE
FIRST STRATEGIC PLAN IN THE
WORLD FOR AUTISM.
IT'S BEEN AROUND SINCE 2009 AND
SO I WAS ABLE TO SHARE WHAT OUR
NEW STRATEGY PLAN WAS SHAPING UP
TO BE AND THERE WERE SEVERAL
COUNTRIES THAT ARE AIMING TO GET
A STRATEGIC PLAN PUT TOGETHER
INCLUDING CANADA WHICH HAD
RECENT LEGISLATION TO CREATE A
NATIONAL STRATEGY AND AUSTRALIA
WORKING ON THEIRS AND THE U.K.
HAS ONE.
SO YETTA.
>> QUICK QUESTION, SUSAN.
DID THEY PROVIDE FEEDBACK WHEN
YOU PRESENTED ON OUR STRATEGIC
PLAN?
ANY THOUGHTS SHARED?
>> IT WAS A PANEL.
I ONLY HAD A FEW MINUTES TO
PRESENT SO IT WASN'T VERY LONG
AND UNFORTUNATELY THE RECORDING
DIDN'T TURN OUT AND IT WAS'
GREAT PRESENTATION.
PERHAPS WE'LL BE ABLE TO PUT
SOMETHING TOGETHER TO DO ANOTHER
FORM OF THE PRESENTATION BECAUSE
IT WAS INFORMATIVE HEARING FROM
COUNTRIES AND LOOKING AT HOW OUR
PLAN HITS MOST THE MAIN POINTS
OF THE CRPD THOUGH WE DIDN'T
EXACTLY DESIGN IT ON PURPOSE BUT
IN OUR COUNTRY WE HAVE
DISABILITY RIGHTS LEGISLATION
THAT ARE ALSO OUR FOUNDATION IN
THE U.S. BUT IT WAS INTERESTING
TO SEE HOW THIS COMPARED WITH
THE STRATEGIES OF OTHER
COUNTRIES.
OF COURSE HERE IN THE U.S. WE'RE
TRYING TO BE SUPPORTIVE OF A
STRATEGY FOR AUTISM AND OUR
OFFICE WILL CERTAINLY BE A PART
OF DISCUSSIONS WITH OTHERS THAT
WANT ASSISTANCE OR HAVE
QUESTIONS ABOUT THAT.
BUT EXCITED THAT WE HAVE A NEW
NATIONAL STRATEGIC PLAN OUT ON
THE STREET NOW.
THIS WAS AN EXCITING EVENT.
AND ALSO I WANTED TO MENTION THE
NSAR MEETING IN STOCKHOLM,
SWEDEN.
A WONDERFUL MEETING WITH
RESEARCHERS AROUND THE WORLD.
THERE WERE KEY NOTE
PRESENTATIONS LISTED THERE AND
SEVERAL PEOPLE AROUND THE TABLE
WERE THERE AND WE MAY NOT HAVE
SEEN EACH OTHER AT THE IACC BUT
WE SAW EACH OTHER IN STOCKHOLM
AND I'D ENCOURAGE YOU TO CHECK
OUT ANYTHING ON THE WEBSITE
ABOUT YOUR DATES FROM THAT
MEETING.
THE NEXT ONE IS IN MELBOURNE,
AUSTRALIA NEXT MAY.
THERE WAS THE RECENT CONFERENCE
ON THE STANFORD NEURODIVERSITY
SUMMIT WITH EMPLOYMENT, MENTAL
HEALTH, HIGHER EDUCATION AND
K-12 EDUCATION AND HUMAN RIGHTS.
IT'S ALWAYS AN OUTSTANDING
CONFERENCE FOR PEOPLE FROM
AROUND THE NEURODIVERGENT
COMMUNITY AND I ENCOURAGE YOU TO
CHECK OUT THE RECORDING IF YOU
WEREN'T ABLE TO ATTEND.
UPCOMING IS THE OCALICONLINE
PRESENTATION WITH PRESENTATIONS
ON NEURODIVERSITY AND RELATED
ISSUES AND I'LL BE SHARING SOME
OF OUR WORK OF THE STRATEGIC
PLAN ON THE CONFERENCE TO HELP
DISSEMINATE THAT.
EYE REPORT ON HEALTH CARE
EXPERIENCES DURING THE COVID-19
PANDEMIC THAT IS A NEW NATIONAL
AUTISM INDICATORS REPORT.
I ENCOURAGE YOU TO LOOK AT THAT
RELEASED BY THE DREXEL AUTISM
INSTITUTE POLICY AND ANALYTIC
CENTER.
THAT CONCLUDES THE UPDATE.
DOES ANYONE HAVE ANY QUESTIONS
ABOUT ANYTHING I'VE MENTIONED?
I WANTED TO GIVE THAT OVERVIEW
BECAUSE IT'S HARD TO KEEP UP
WITH EVERYTHING AND WANTED TO
GIVE YOU AN OVERVIEW OF THE
HIGHLIGHTS SINCE THE LAST
MEETING.
SO WE HAVE MOVED ROUND ROBIN UP
TO THIS SECTION OF THE MEETING
TO GIVE YOU A CHANCE NOW AFTER
JUST HEARING THOSE UPDATES TO
SHARE YOUR UPDATES.
I'LL TURN IT OVER TO JOSH.
>> LET ME REITERATE IF THERE'S
QUESTIONS FOR SUSAN I'LL PAUSE
FOR A MOMENT AND ALLOW PEOPLE TO
RAISE THEM.
>> THANK YOU, SUSAN FOR THE
THOROUGH UPDATE.
WE HAVE ONE ITEM WE WANTED TO
SHARE FROM THE NATIONAL
INSTITUTES OF MENTAL HEALTH.
I'LL TAKE THE CHAIR'S
PREROGATIVE TO PRESENT FIRST AND
WE HAVE PEOPLE WHAT WANT TO MAKE
SURE THEY HAVE A CHANCE.
SAM.
YOU RAISED YOUR HAND.
IS THAT TO PROVIDE AN UPDATE OR
ASK A QUESTION OF SUSAN?
>> JUST AN UPDATE.
>> WE'LL HAVE YOU NEXT.
I MENTIONED THIS IS THE 75th
ANNIVERSARY FOR THE NATIONAL
INSTITUTE OF HEALTH AND COMMENTS
ON EVENTS YOU CAN ATTEND OR LOOK
FORWARD TO.
NEXT SLIDE.
STARTING LAST MONTH WE BEGAN A
YEAR-LONG CELEBRATION OF 75
YEARS OF UNDERSTANDING THE
TREATMENT OF MENTAL ILLNESSES.
WE PLANNED A VARIETY OF
ACTIVITIES INCLUDING SYMPOSIA,
SESSIONS AND SCIENTIFIC MEETINGS
AND LECTURES AND MEDIA THAT
SHARES STORIES, DISCOVERIES AND
INSPIRATION.
WE HAVE A NUMBER OF PODCASTS WE
WILL BE RELEASING THROUGHOUT THE
YEAR.
VIDEO MESSAGES, STORIES ABOUT
SCIENCE THAT'S BEEN ACCOMPLISHED
AND STORIES FOR THE FUTURE.
WE HAVE A WEBSITE
NIMH.NIHNIMH.NIH.
NIMH.NIH.gov/75 YEARS.
CAN FOLLOW US AS WE ADD ITEMS
THROUGHOUT THE YEAR.
THAT'S IT.
WITH THAT WE'LL GO IN THE ROUND
ROBIN.
WE START WITH SAM CRANE.
>> THE THING I WANTED TO SHARE
FROM QUALITY TRUST IS WE'VE JUST
BEEN AWARDED CONTINUATION OF OUR
GRANT FROM THE OFFICE OF
VIOLENCE AGAINST WOMEN TO
DEVELOP BEST PRACTICES TO
SUPPORT PEOPLE WITH INTELLECTUAL
AND DEVELOPMENT DISABILITIES
BOTH MEN AND WOMEN WHO HAVE
SURVIVED SEXUAL VIOLENCE AND
HOPEFULLY THAT CAN INCLUDE
APPROPRIATE EDUCATION TO
RECOGNIZE BOTH HEALTHY SEXUAL
RELATIONSHIPS AND INAPPROPRIATE
OR EITHER ABUSIVE,
NON-CONSENSUAL OR EXPLOITIVE
RELATIONSHIPS.
WE'RE EXCITED ABOUT THAT AND
WE'LL SOON RELEASING THE REPORT
FROM THE FIRST ROUND OF THAT
GRANT.
KEEP AN EYE OUT.
>> THANK YOU, SAM.
NEXT TO PAUL.
>> WE RECEIVED PUBLIC COMMENTS
ABOUT THE TRAINING OF
PEDIATRICIANS.
THERE'S BEEN THE ACCREDITATION
COUNCIL ON THE COUNCIL ON
EDUCATION TO ELIMINATE THE
REQUIREMENT THE PEDIATRIC
FACULTY INCLUDE A BOARD
CERTIFIED DEVELOPMENTAL
PEDIATRICIAN AND TO ELIMINATE
THE ADEQUATE FOR QUOTE, UNQUOTE,
ADEQUATE EXPOSURE TO TYPICAL
DEVELOPMENT AND LONGITUDINALLY
AND TO THE DEVELOPMENT OF
CHILDREN WITH SPECIAL HEALTH
CARE NEEDS.
THERE WERE PUBLIC COMMENTS AND I
THINK ALSO STRONG ADVOCACY FROM
THE MEMBERS OF THIS COMMITTEE
THOSE CHANGES WOULD REALLY BE
DETRIMENTAL TO THE CARE OF
CHILDREN WITH AUTISM.
IN FACT THE COMMIT ISSUED A
STATEMENT ABOUT THAT AND
REFLECTED ON THE FACT THAT OUR
STRATEGIC PLAN TOUCHES ON THIS
ISSUE AND THE IMPORTANCE AND THE
RECENT NIH ANNOUNCEMENT THAT IS
RECOGNIZING INDIVIDUALS WITH
DISABILITIES AS BEING AFFECTED
BY HEALTH CARE SO A PARTIAL WIN.
THEY RETRACTED THE DELETION SO
THEY'LL REQUIRE HAVING
DEVELOPMENTAL PEDIATRICIANS FOR
PEDIATRIC RESIDENCIES BUT
LEADING THE REQUIREMENT FOR
ADEQUATE EXPOSURE TO TYPICAL
LONGITUDINAL DEVELOPMENT IN
CHILDREN WITH SPECIAL HEALTH
CARE NEEDS.
I THINK PEDIATRICIANS IN
TRAINING HAVE NEVER QUITE GOTTEN
FULLY ADEQUATE EXPOSURE.
PEDIATRICIANS CONTINUE TO LEARN
A LOT AFTER THEIR RESIDENCIES
HAVE CONCLUDE AND WILL CONTINUE
I HOPE AND THE ADVOCACY OF THIS
COMMITTEE WAS AN IMPORTANT PART
OF THE PLANS.
>> THANK YOU, PAUL AND THANKS TO
THE COMMITTEE.
THANKS TO SUSAN AND HER STAFF
FOR FOLLOWING THROUGH OVER THE
NEXT SEVERAL DAYS TO PUT OUT A
STATEMENT ON OUR BEHALF.
>> I AGREE, PAUL.
I'VE HAD TO BASICALLY SUPPORT MY
SON'S PEDIATRICIAN THROUGH THE
YEARS IN HELPING HIM SUPPORT
OTHER FAMILIES BECAUSE THEY
DON'T HAVE THAT KNOWLEDGE AND
EXCITED TO PUSH THAT THROUGH.
ON OTHER NOTE I'M EXCITED TO
SHARE WORK WITH FAMILY VOICES WE
RECENTLY PUBLISHED A WHITE PAPER
AND EXECUTIVE SUMMARY ON THE
WORK WE HAVE DONE FUNDED THROUGH
PATI
PATIENT-CENTERED OUTCOME
INSTITUTE EUGENE WASHINGTON
AWARD THE TITLE IS
PATIENT-CENTER TO ENGAGE THE
AFRICAN AMERICAN COMMUNITY.
OVER THE LAST TWO YEARS WE HAVE
WORKED TO ENGAGE OVER 200
STAKEHOLDERS, RESEARCHERS,
SELF-ADVOCATES, FAMILY MEMBERS,
PROVIDERS, COMMUNITY PROVIERS A
THE COUNTRY AND HELPED SHAPE
WHAT THE RESEARCH AGENDA IS AND
WE'RE REALLY EXCITED ABOUT IT.
TO GIVE AN OUTLINE OF WHAT IS
INCLUDED.
THERE'S THREE KEY STRATEGIES FOR
RESEARCHERS TO ENSURE THEIR
RESEARCH IS CULTURALLY
RESPONSIVE AND RELEVANT TO THE
AFRICAN AMERICAN COMMUNITY.
IT PROVIDES EQUAL OPPORTUNITIES
FOR AFRICAN AMERICANS TO
PARTICIPATE AND CONSIDERS HOW
RESEARCH RESULTS WILL BE SHARED
BACK WITH THE COMMUNITY IN WAYS
ACCESSIBLE AND ACTIONABLE.
AGAIN I WANT TO SHARE MY
APPRECIATION IN THAT WORK AND
HOPE YOU'LL TAKE TIME TO REVIEW
IT AND READ IT AND ADOPT SOME OF
THESE THINGS IN YOUR WORK IF
YOU'RE NOT ALREADY DOING SO.
THANK YOU FOR GIVING ME THE
TABLE.
>> THANK YOU, YETTA.
FANTASTIC I LOOK FORWARD TO
SHARING THAT WITH OUR NIMHD
RESEARCHERS BROADLY.
SCOTT ROBERTSON, NEXT TO YOU.
>> AFTER THE MEETING ITE --
I'LL GET THE LINKS FOR THESE.
FOR NATIONAL DISABILITY
EMPLOYMENT AWARENESS MONTH WE
HAVE A WEBSITE FOR THAT AND A
BLOG POST FROM ANUPA WITH
REMARKS ON ENDING NATIONAL
HISPANIC HERITAGE MONTH WE HAVE
A BLOG POST FROM MY COLLEAGUES
FROM ODEP EMPLOYMENT OF
HISPANICS WITH STABILITIES IN
SKILLED TRADE PROFESSIONALS AND
NATIONAL HISPANIC HERITAGE MONTH
I BELIEVE ENDS ON THE 15th.
AND YOUNG ADULTS FROM THE AUTISM
SPECTRUM PROJECT ON
REHABILITATION SERVICES AND I'LL
MAKE SURE THE LINKS ARE IN THE
BRIEF UPDATE AND NATIONAL
APPRENTICESHIP WEEK IS HAPPENING
NEXT MONTH.
SO OUR PARTNERSHIP ON INCLUSIVE
PARTNERSHIP IS GOING TO BE
EMPHASIZING THAT MONTH AND HOW
APPRENTICESHIP SUPPORT,
INCLUSIVE PATHWAYS FOR PEOPLE
WITH DISABILITIES INCLUDING
NEURODIVERGENT PEOPLE INCLUDING
AUTISTIC PEOPLE.
>> THANK YOU, SCOTT.
ALISON.
>> GOOD MORNING.
I'M GOING TO INCLUDE ALL THE
RELEVANT LINKS.
SUPPORTED EMPLOYMENT
DEMONSTRATION PROJECT HAS
CONCLUDED FINDING SIGNIFICANTLY
HIGHER RATES FOR THOSE WHO
RECEIVE THE INTERVENTION.
THE REPORT AND PUBLIC USE FILES
ARE NOW AVAILABLE.
CONGRATULATIONS TO THE SIX
APPLICANTS SELECTED FOR THE
FIVE-YEAR RETIREMENT AND
DISABILITY RESEARCH CONSORTIUM
COOPERATIVE AGREEMENT AWARDS.
THIS IS A $12 MILLION PER YEAR
AWARD SPLIT BETWEEN THE PARTNER
CENTERS.
WE HAVE INFORMATION ABOUT SOCIAL
SECURITY SERVICES FOR HISPANIC
COMMUNITY AND LINKS TO OUR
SPANISH WEBSITE AND PUBLICATION
IN SPANISH.
FOURTH, WE'RE LOOKING FOR YOUR
COMMENTS REGARDING OUR ROW --
PROPOSAL TO DETERMINE WHETHER AN
INDIVIDUAL'S PAST WORK IS
RELEVANT FOR MAKING DISABILITY
DERM NAGE -- DETERMINATIONS
FROM 15 YEARS TO FIVE YEARS.
TO MAKE SURE YOUR COMMENTS ARE
CONSIDERED WE MUST RECEIVE THEM
BY NOVEMBER 28 AND THE YOUTH
TRANSITIONING TO ADULTHOOD AND
PREPARING FOR AN 18
DETERMINATION WILL BE NEXT 1:00
TO 3:00 EASTERN BY MICROSOFT
TEAMS REGISTER BY NEXT
WEDNESDAY, OCTOBER 16.
>> MITCH.
>> IT'S HARD TO HEAR YOU.
>> WE MENTIONED THE
INTERDEPARTMENTAL HEALTH
COMMITTEE AND THE COORDINATING
COMMITTEE AND I PUT THAT LINK
IN.
>> THANK YOU.
I WORK IN THE OFFICE OF SPECIAL
EDUCATION PROGRAMS DEPARTMENT OF
EDUCATION AND HAVE THE
DISCRETIONARY GRANTS ON THE
INDIVIDUALS WITH DISABILITIES,
EDUCATION ACT AS WELL AS ALL THE
DATA FOR THE UP TO $7 MILLION
CHILDREN WITH DISABILITIES BIRTH
TO 21.
I WANTED TO UPDATE YOU WE JUST
MADE $35 MILLION IN PERSONAL
PREPARATION GRANTS TOWARDS THE
END OF THE PHYSICAL YEAR ON ANY
GIVEN DAY OUR FUNDS SUPPORT
ABOUT 6,000 SCHOLARS.
WE SPEND ABOUT $100 MILLION AN
ON PERSONNEL PREPARATION.
THESE WERE FOR MASTER AND
BACHELOR GRANTS AND TO THE
PRODUCTION OF RELATED SERVICES
PERSONNEL, OTPT SPEECH, SCHOOL
PSYCHOLOGIST, COUNSELORS, SOCIAL
WORKERS.
WE HAD A SEPARATE PROGRAM FOR
MINORITY INSTITUTIONS THAT
FOCUSSED ON HBCUs, MINORITY
SERVING INSTITUTIONS AND TRIBAL
COLLEGES AND UNIVERSITIES.
WE ALSO MADE A LARGE GROUP OF
DOCTORAL TRAINING GRANTS.
OUR FUNDS SUPPORT 40% TO 50% OF
THOSE AWARDED EVERY YEAR.
MY MESSAGE IS THERE'S A LOT OF
FREE MONEY OUT THERE RIGHT NOW
FOR SCHOLARS AND IF YOU HAVE
FAMILY, FRIENDS OR COLLEAGUES
LOOKING TOWARDS DEGREES IN THE
DISABILITY FIELD IT'S USUALLY
VERY HIGHLY SUPPORTED WITH
FEDERAL FUNDS AND A CAN TELL YOU
THEY'RE THE FINEST PROGRAMS IN
THE COUNTRY.
THANK YOU AND YOU CAN CONTACT ME
AT LARRY.WEXLER@ED.gov AND HOOK
YOU UP WITH WHOEVER YOU NEED.
>> STEWART SHAPIRO FROM THE CDC.
I HAVE A BRIEF PUBLIC SERVICE
ANNOUNCEMENT FROM THE CDC.
EVERYONE IS LIKELY AWARE THAT WE
ARE COMING UP ON RESPIRATORY
VIRUS SEASON WHICH WILL INCLUDE
FLU AND COVID AND RSV WITHOUT A
DOUBT.
ALL THESE CAN CAUSE SERIOUS
INFECTIONS PARTICULARLY IN THE
VERY YOUNG AND ELDERLY AND
PEOPLE WITH CHRONIC HEALTH
CONDITIONS AND PEOPLE WITH
DISABILITIES.
VACCINATION IS THE BEST
PROTECTION FROM THESE ILLNESSES.
ALL ARE ENCOURAGED BY THE CDC TO
GET VACCINATED IN ORDER TO
PROTECT ONE'S SELF AND ONE
FAMILY FROM VACCINE PREVENTIBLE
SERIOUS INFECTION BY THESE
VIRUSES.
THANK YOU.
THERE'S AN INITIATIVE STARTED AT
NSAR AND HAVE A SPECIAL INTEREST
GROUP AND GROUP OF SCIENTISTS
AND STAKEHOLDERS AND ADVOCATES
AROUND SEVERE INTENSE AND
DANGEROUS BEHAVIORS.
THESE ARE BEHAVIORS FROM THINGS
LIKE AGGRESSION TO SELF-INJURY
AND UNDER THE RUBRIC OF THESE
BEHAVIORS.
IF ANYONE IS INTERESTED YOU CAN
E-MAIL ME ON THE IACC WEB PAGE
AND I DON'T KNOW HOW MANY PEOPLE
KNOW WE'RE PARTNERING WITH THE
Ls FOR AUTISM FOUNDATION FOR AN
INITIATIVE SPECIFICALLY FOR
SIBLINGS.
SIBLINGS ARE SOMETIMES THE
UNSUNG HEROES OF THE AUTISM
COMMUNITY AND ALL FEEL OR MOST
OF THEM I FOUND FEEL ARE KIND OF
ISOLATED AND ALONE.
SO WE'VE CREATED SOMETHING A
LITTLE BIT DIFFERENT THAN SHOPS
BUT IT'S MORE OF AN ONLINE
NETWORKING AND WE HAVE
SCIENTIFIC SPEAKERS THAT TALK
ABOUT RESEARCH AND ARE INFORMED
BY WHAT SIBLINGS THINK SHOULD BE
RESEARCH SO.
AND BEFORE I FORGET WE HAVE PRE
AND POST-DOCTORAL FELLOWSHIPS
DUE IN EARLY SEPTEMBER.
PLEASE LOOK ON OUR WEBSITE AND
APPLY.
>> THANK YOU VERY MUCH.
WE ARE RIGHT ON TIME.
>> JALEN, I'LL ASK YOU TO BE
BRIEF.
>> JENNIFER AND JAYHLI.
>> I WANT TO MENTION TO STEWART
I'VE LIVED WITH THE DEVELOPER ON
VACCINES FOR CHILDREN AND THE
TREATMENT FOR RSV FOR OVER 40
YEARS.
YES, IT'S SERIOUS AND YOUR
ANNOUNCEMENT WAS VERY IMPORTANT.
WE'RE CURRENTLY WORK ON A PILOT
PROGRAM WHICH IS YIELDING SOME
VERY INTERESTING RESULTS.
WE HAVE PUBLICATIONS ON OUR
FIRST FINDINGS, KNOWING WE NEED
TO GO BROADER AND DEEPER.
WE HAVE HOUSING REPORT OUT OF
SALT LAKE WHICH SHOULD TRANSLATE
TO MUNICIPALITIES OF SIMILAR
POPULATIONS.
BUT THE RESEARCH THAT WE ARE
DOING COLLECTING DATA BECAUSE
THERE'S SO LITTLE ON ADULTS
WE'RE TRYING TO GET INFORMATION
THAT WE CAN EMPOWER LEGISLATORS,
LAWMAKERS ON ALL LEVELS ABOUT
ACTS ON ADULTS WITH AUTISM AND
THE EXPERIENCE THEIR FAMILIES
ARE HAVING AND WHERE THE NEEDS
ARE RATHER THAN SITTING AROUND
THE TABLE GUESSING AND WHAT
THOSE MAY BE.
IT'S BEEN A VERY INTERESTING
THING AND WE'RE GOING TO BE
MAKING ALL OF THESE THINGS
AVAILABLE TO THE NATION AND IF
THERE ARE MUNICIPALITIES OR
STATES THAT WANT TO DO THINGS
WE'RE FINDING GREAT EMPOWERMENT.
THE GOVERNOR IS ENDORSING
EVERYTHING WE ARE DOING AND
FINDING GREAT POWER IN EDUCATING
THOUGHT LEADERS INCLUDING
LEGISLATORS ON THE STATE AND
NATIONAL LEVEL AND LOCALLY WITH
MAYORS AND COUNTY COUNCIL AND
EDUCATING PARENTS ON WHAT THEY
CAN USE IN THEIR COMMUNITIES AND
MAKING SURE THEY'RE TALKING TO
ONE ANOTHER.
THERE'S HEAVY INFORMATION ALONG
THE WAY.
IT'S LOOKING AT THE ISSUES OF
ADULTS WITH AUTISM AND OTHER
NEURODIVERSITIES WE'RE WORKING
HARD WITH HOUSING BECAUSE THE
RATE OF HOMELESSNESS IS
ESTIMATED TO BE 20% AND MORE IF
YOU INCLUDE NEURODIVERSITIES AND
TRYING TO WORK ON THE CURRENT
SITUATION AND TRYING TO PREVENT
HOMELESSNESS IN THE FUTURE.
IT'S GOING TO TAKE INTO
CONSIDERATION MANY THINGS AND
THE EXPERTISE OF MANY OF YOU
AROUND THE TABLE.
AND ID WOULD LIKE TO TALK TO
ANYONE INTERESTED IN THIS AND
WE'RE WORKING WITH URBAN,
SUBURBAN AND RURAL AND NATIVE
COMMUNITIES TOGETHER TO GATHER
DATA.
>> JENNIFER.
>> A FEW UPDATES FROM THE
ADMINISTRATION FOR COMMUNITY
LIVING AND TO STEWARD'S POINT
ABOUT VACCINATIONS OUR GRANTEES
CONTINUE WORK TO ASSIST PEOPLE
IN GETTING VACCINATED NOT ONLY
FOR COVID BUT OTHER VIRUSES THAT
OFTEN HAPPEN IF THE FALL.
AS PART OF THAT EFFORT WE
RECENTLY LAUNCHED ENHANCE
WEBSITE FOR THE DISABILITY
INFORMATION AND ACCESS LINE
WHERE ANY MEMBER OF THE PUBLIC
CAN GO ON THE SITE TO SEARCH FOR
THEIR STATE OR LOCAL ACL ZABL
PROGRAM.
THAT'S A NEW RESOURCE
AVAILABLE -- AVAILABLE PROGRAM.
>> THE ADMINISTRATION ON
DISABILITIES AND ACL AWARDED
SEVERAL PROJECTS AT THE END OF
SEPTEMBER I WANTED TO HIGHLIGHT.
ONE LARGE PROJECT WE'RE GET
STARTED ON IS THE NATIONAL
CENTER FOR DISABILITY GRASSROOTS
ADVOCACY AND THE PROJECT IS
DESIGN TO GET INFORMATION ANDS
INTO THE HANDS OF PEOPLE WITH
DISABILITIES TO THEY'RE BETTER
INFORMED TO BETTER ADVOCACY FOR
THEMSELVES.
WE'LL HAVE SPECIFIC AREAS OF
FOCUS ON THE STUDY AND ISSUES
RELATED TO HOUSING BUT ALSO
OTHER AREAS OF ADVOCACY IN TERMS
OF HEALTH AND SAFETY IN THE
COMMUNITY.
AS WELL AS THE DIRECT CARE
WORKFORCE.
WE'LL ALSO DESIGN THEM IN A WAY
TO CONNECT THE GRASSROOTS
ADVOCATE TO STATE ENTITIES AS
WELL AS NATIONAL ENTITIES AS
WELL AS OTHER GRASS ROOT
ADVOCATES AT THE LOCAL LEVEL.
WE ALSO AWARDED A PROJECT THAT
WILL BE LOOKING AT PEER-TO-PEER
SUPPORT MODELS FOR AUGMENTATIVE
COMMUNICATION TO INCREASE THE
USE OF AUGMENT AND ALTERNATIVE
COMMUNICATION FOR THOSE WHO
POTENTIAL USERS BUT MAY NOT BE
USING IT BECAUSE THERE'S OTHER
GATE KEEPERS PREVENTING THEM
FROM USING IT OR DON'T HAVE
ENOUGH EXPOSURE AND WORKING WITH
PEERS MAY HELP WITH THE ADOPTION
OF USING AAC.
AND LASTLY WE AWARDED CONTRACT
TO PROVIDE BOTH LOGISTICAL AND
PLANNING SPORT FOR OUR IDD
INITIATIVE TO GET BETTER HEALTH
SURVEILLANCE AND PREVALENCE ON
THE POPULATION.
THERE'S AN ELEMENT WE'RE FUNDING
WITH OUR PARTNERS WITH CDC TO
LOOK AT ESTABLISHING A CENTER
FOR EXCELLENCE ON DATA ON THE
IDD POPULATION.
GLAD WE'RE ABLE TO CONTINUE THAT
WORK WITH ADDITIONAL SUPPORT.
>> THANK YOU VERY MUCH.
WE'RE GOING TO NOW TAKE A BREAK.
YES, AND I ALSO JUST WANT TO
POINT OUT THAT WE HAVE A WRITTEN
DOCUMENT WITH ROUND ROBIN
UPDATES SUBMITTED BY MEMBERS SO
FOR ANYONE WATCHING ONLINE OR
WAS HERE AT THE TABLE YOU CAN
READ THROUGH THOSE UPDATES AND
WE'VE PROVIDED LINKS AND AFTER
THE MEETING WE OFTEN UPDATE THE
DOCUMENT BASED ON WHAT WAS
SHARED AT THE TABLE TOO.
GO BACK TO THAT AS A RESOURCE
AND IF THERE'S SOMETHING YOU
HEARD HERE AND DIDN'T CATCH IT,
YOU CAN ALWAYS WRITE TO OUR
OFFICE AS WELL TO GET THE
INFORMATION.
YES, WE'LL GO ON BREAK. THANK YOU.
OKAY.
READY TO GET STARTED WITH IACC
COMMITTEE BUSINESS.
SO AN OVERVIEW OF WHAT WE'RE
GOING TO BE TALKING ABOUT TODAY
ARE THE IACC'S STRATEGIC PLAN.
THE SUMMARY OF ADVANCES AND
PLANNING FOR FUTURE PROJECTS.
FIRST I'M VERY HAPPY TO ANNOUNCE
THAT THE NEW 2021 TO 2023 IACC
STRATEGIC PLAN HAS BEEN RELEASED
AND YOU MAY HAVE RECEIVED THE
E-MAIL OR SEEN ANNOUNCEMENTS ON
SOCIAL MEDIA BUT THIS WAS JUST
RELEASED RECENTLY AND AS A
REMINDER JUST OF THE PAST ACTIVE
THE IACC VOTED TO APPROVE THE
IACC STRATEGIC PLAN IN JANUARY
AT THE FULL COMMITTEE MEETING
THAT TOOK PLACE AT THAT TIME AND
NOW THE IACC STRATEGIC PLAN IS
POSTED ON OUR WEBSITE WITH AN
EASY READ VERSION.
THE REGULAR STRATEGY PLAN IS
OVER 200 PAGES AND THE EASY READ
IS 16 PAGES SO IT'S CONDENSED
SUBSTANTIALLY.
AND THESE ARE ON OUR WEBSITE.
YOU CAN ACCESS THEM IN PDF.
AND THE PLAN CONTAINS 24
RECOMMENDATIONS FOR ACTIVITIES
TO IMPROVE THE HEALTH, WELL
BEING AND OUTCOMES FOR AUTISTIC
PEOPLE WITH DIVERSE NEEDS ACROSS
ALL COMMUNITIES.
IT'S THE MOST COMPREHENSIVE
STRATEGIC PLAN TO DATE SO
CONGRATULATIONS TO THE COMMITTEE
FOR ENSURING THAT WE COVERED NEW
AREAS THAT HAD NOT BEEN COVERED
IN PREVIOUS STRATEGY PLANS AND
WE OF COURSE APPRECIATE THE NEW
DEPARTMENTS THAT HAVE JOINED OUR
COMMITTEES SINCE WE STARTED IN
2021 WITH ADDITIONAL DETAILS OF
AREAS WE NEED TO COVER.
WE'RE EXCITED TO HAVE THE PLAN
RELEASED TO THE PUBLIC.
I'LL BE CONTINUING TO DO
PRESENTATIONS ACROSS THE
COMMUNITY ABOUT THE STRATEGIC
PLAN TO HELP PEOPLE GET IN TOUCH
WITH IT AND WE WELCOME TO YOU
SHARE THE INFORMATION AS WELL
AND I KNOW I'VE PROVIDED SOCIAL
MEDIA GRAPHICS TO THE COMMITTEE
IF YOU'D LIKE TO SHARE IT OR IF
YOU ARE GOING TO BE SPEAKING
SOMEWHERE AND WANT TO MENTION
THE STRATEGIC PLAN AND YOU NEED
SOME SUPPORT FROM OUR OFFICE
JUST LET US KNOW.
THANK YOU TO MEMBERS OF THE
COMMITTEE AND PUBLIC WHO SHARED
YOUR INPUT TO MAKE THIS
STRATEGIC PLAN COVER THE DIVERSE
NEEDS OF THE COMMUNITY.
WE'RE EXCITED TO ANNOUNCE THAT
IT'S OUT.
THIS IS FOR ANYBODY WHO MIGHT BE
READING THE SLIDE SET LATER JUST
MENTIONING THAT THE NEW STRATEGY
PLAN STILL COVERS THE SEVEN
ORIGINAL AREAS THE OLD STRATEGY
PLAN COVERED INCLUDING
SCREENING, DIAGNOSIS, BIOLOGY
AND GENETIC FACTORS,
INTERVENTIONS, SERVICES AND
SUPPORTS, LIFE SPAN ISSUES AND
INFRASTRUCTURE AND PREVALENCE
BUT ALSO ADDS EQUITY AND
DESPAIRS AND EXPANDED SECTION ON
SEX AND GENDER AND A NEW SECTION
ON THE IMPACTS OF COVID-19 ON
THE COMMUNITY.
THIS SLIDE JUST SHARDZ OF SHARES
SOME OF THE VERY IMPORTANT
THEMES IN THE NEW STRATEGIC PLAN
INCLUDING GREATER ACCEPTANCE AND
INCLUSION OF AUTISTIC
INDIVIDUALS ACROSS THE
COMMUNITY.
INCREASED ACCESSIBILITY OF
SERVICES AND RESEARCH FOR
AUTISTIC INDIVIDUALS AND THEIR
FAMILIES, SOLUTIONS FOR PEOPLE
ACROSS THE ENTIRE SPECTRUM
INCLUDING THOSE WITH THE HIGHEST
SUPPORT NEEDS, SOLUTIONS FOR
PEOPLE ACROSS THE ENTIRE LIFE
SPAN INCLUDING ADULTS AND OLDER
ADULTS.
SOLUTIONS TO IMPROVE PHYSICAL
AND MENTAL HEALTH FOR AUTISTIC
INDIVIDUALS, INTERSECTION OF
SOCIAL DETERMINATES OF HEALTH
AND THE SERVICES SYSTEM AND THE
GOAL TO INCREASE EQUITY AND
REDUCE DISPARITIES AND SO THOSE
ARE SOME OF THE MAIN THEMES.
THIS IS AN OVERVIEW OF THE EASY
READ VERSION THAT'S AVAILABLE.
THANK YOU FOR YOUR WORK ON THIS.
>> SO THE NEXT ITEM I'M GOING IT
TURN TO UNLESS THERE'S QUESTIONS
OR COMMENTS ABOUT THE STRATEGIC
PLAN?
>> I'D LIKE TO MAKE ONE COMMENT
THAT I REALLY APPRECIATE THE
INPUT FROM MEMBERS OF THIS
COMMITTEE WHO INSISTED ON US
DEVELOPING THAT EASY READ
VERSION OF THE STRATEGIC PLAN.
I THINK THAT'S A MAJOR
CONTRIBUTION YOU ALL HAVE MADE
SO THAT MEMBERS REALLY AS FAR
ACROSS THE SPECTRUM CAN SEE WHAT
WE'RE RECOMMENDING AND THE
VARIOUS ORGANIZATIONS ARE DOING.
IT'S WONDERFUL TO BE HAVE THAT
DOCUMENT.
YETTA YOU WANT TO MAKE A COMMENT
OR QUESTION.
>> NOT THIS VERSION BECAUSE IT
JUST CAME OUT OF THE EASY READ
DOCUMENT BUT THE VERSION BEFORE
WHEN WE WERE WORKING ON OUR
PROJECT AND HAD BREAKOUT
SESSIONS WE USED THE EASY READ
DOCUMENT WITH THE FAMILIES AND
SELF-ADVOCATES WHO WERE HAVING
CONVERSATIONS.
IT IS BEING USED IN A LOT OF
WAYS AND I'M SURE OTHER MEMBERS
WILL SHARE OUT WITH YOU BUT I
WANTED TO HIGHLIGHT THAT.
I FORGOT TO SHARE THAT EARLIER.
>> THANK YOU FOR SHARING THAT
WITH US.
WE ALSO REALLY WELCOME FEEDBACK
ON THE EASY READ VERSION BECAUSE
THIS WAS OUR FIRST TIME DOING AN
EASY READ OF SUCH A BIG
DOCUMENT.
WE'RE OPEN TO LEARNING WHAT WILL
BE MOST ACCESSIBLE FOR PEOPLE.
IF YOU'RE READING THE EASY READ
AND HAVE COMMENTS OR FEEDBACK
FOR US TO MAKE THE NEXT TIME WE
DO IT BETTER, LET US KNOW.
>> DENA.
>> I WANT TO CONGRATULATE YOUR
CREW AND THE DOCUMENT AND I'M
GRATEFUL YOU SEE THE VALUE OF
IT.
WE ALSO USED EASY READ AND
STARTED EMBEDDING SOMEONE'S FACE
IN THE PROCESS AND THEY TALK YOU
THROUGH WHAT'S IN THE EASY READ.
THEY BASICALLY READ IT TO YOU.
FOR MANY AUTISTIC PEOPLE OR
OTHER LEARNING CHALLENGES, BEING
ABLE TO SEE SOMEONE'S LIPS AT
THE SAME TIME AS YOU CAN SEE THE
PRINTED DOCUMENT IT'S SO
HELPFUL.
IT'S BABY STEPS IN IMPROVEMENT
BUT I'M HAPPY WITH WHAT WE'VE
DONE BUT THAT'S ONE WEEK WE MAY
BE ABLE TO DO TO MAKE IT MORE
ACCESSIBLE.
>> THAT'S FANTASTIC.
I'D LOVE IT HEAR MORE ABOUT THAT
AND PERHAPS WE CAN PUT MEMBERS
OF THE COMMITTEE TO WORK IF
YOU'D LIKE TO EACH READ A
CHAPTER IN SOME SORT OF VIDEO
VERSION.
WE'RE OPEN TO WORKING ON THAT
WITH YOU.
>> MY HAND IS UP.
>> EXCELLENT.
ANY OTHER COMMENTS ABOUT TE
STRATEGIC PLAN?
IVA
IVANOVA.
>> I HAVE COMMENTS ONLINE.
SCOTT.
>> I WANTED TO SAY THANK YOU FOR
THE EASY READ VERSION.
IT'S BEEN DONE INCREASINGLY IN
RESEARCH IN A LOT OF A NUMBER OF
THE AUTISM JOURNALS HAVE
ENCOURAGED SUMMARIES OR EASY
READ VERSIONS OF TECHNICAL
ARTICLES.
YOU SEE IT IN PRACTICES FOR
SUPPORTS AND SERVICES.
I THINK IT'S IMPORTANT WE HAVE
THAT FOR THE IACC STRATEGIC PLAN
AND I'LL BE SEEKING TO IF I CAN
MAYBE BE A PART OF READING THE
CHAPTERS OR WHATEVER OUT LOUD.
I THINK THAT WOULD BE HELPFUL
FOR ACCESSIBILITY.
THANK YOU FOR THE STAFF AT NIH
FOR PUTTING TOGETHER THAT EASY
READ VERSION AND YOUR WORK ON
SUPPORTING TOGETHER THE
STRATEGIC PLAN.
IT'S WONDERFUL.
>> THANK YOU.
NEXT COMMENT FROM MORENIKE.
>> SHE SAID WE APPRECIATE THE
INCLUSION OF THE PRINT VERSION
[NO AUDIO]
IT'S SOMEWHAT MORE HIGH LEVEL
THAN IS IDEAL BUT MORE OF A LAY
PERSON VERSION.
AND TREMENDOUS APPRECIATION.
>> WE CAN TAKE THE EASY READ
CONSIDERATION FOR THE NEXT
PROJECT TO CONTINUE TO OPTIMIZE.
>> IVANOVA.
>> I JUST WANT TO THANK THE
COMMITTEE FOR THE EFFORTS ON
MAKING THE MATERIALS MORE
ACCESSIBLE FOR PEOPLE WITH
INTELLECTUAL ZABLS.
-- DISABILITIES.
A LOT OF TIMES INTELLECTUAL
DISABILITY IS NOT THOUGHT ABOUT
IN THE CONVERSATION.
I'M EXCITED THAT AND RECOGNIZE
THAT AND IT MAKES ME HAPPY AND
REPRESENT THE COMMUNITY AND
THERE'S AN EFFORT TO MAKE THINGS
MORE ACCESSIBLE.
I HOPE WE HAVE MORE
ACCESSIBILITY IN THE FUTURE I'M
EXCITED ABOUT THIS SO THANK YOU.
>> THERE'S THE STANDARD
NEURODIVERSITY SUMMIT AND WE HAD
A NICE BREAKOUT SESSION AFTER MY
TALK.
WE HAD AN HOUR TO TALK ABOUT THE
PERSPECTIVES OF IACC MEMBERS AND
HAD NEURODIVERGENT MEMBERS OF
OUR COMMITTEE AND THERE'S AN
IMPACT ON THE COMMUNITY.
THAT WAS NICE.
AND WE'LL BE SHARING WORK ON THE
COMMITTEE AND GIVING COMMITTEE
MEMBERS TO BE INVOLVED IN
PRESENTATIONS.
THANK YOU TO YOU ALL FOR
PARTICIPATING IN THAT.
>> EVERYBODY KNOWS WHAT'S
HAPPENING IN UKRAINE AND THE WAR
IN UKRAINE.
I'VE BEEN ABLE -- OUR FOUNDATION
HAS BEEN ABLE TO PARTNER WITH
SOMEONE WHO SERVED ON TWO
PRESIDENT SHALL CABINETS.
THERE'S A LOT OF FAMILIES WITH
SPECIAL NEEDS IN WAR-TORN AREAS
THAT ARE HAVING TO RESCUE AND
BRING THEM OUT OF COMBAT ZONES
AND THEY CREATE HELP CENTERS.
THEY ALLOW THEM TO BE ABLE TO
HAVE A PLACE TO LIVE FOR AT
LEAST A YEAR, FOOD TO EAT AND
ALSO THE BIG NEED THEY HAVE
OBVIOUSLY IS SERVICES.
CHAMPIONS FOUNDATION JUST
DEDICATED THE FIRST SPECIAL
NEEDS DEVELOPMENTAL CENTER AND
THERE'S 13 NEEDS WE'LL PUT
SPECIAL NEEDS DEVELOPMENTAL
CENTERS WITH KIDS CAN GET
SERVICES AND HELP.
COOL WE'RE ABLE TO DO THAT AND
BE A PART OF THAT.
>> THANK YOU FOR SHARING THAT
WONDERFUL WORK.
I WANTED TO GIVE AN UPDATE ON
THE SUMMARY OF ADVANCES.
I CHECK OFF THE DIFFERENT
ACTIONS THAT HAVE HAPPENED ON
THE 2022 ADVANCES INCLUDING
YOU'VE ALL NOMINATED ARTICLES.
WE DISCUSSED THEM IN COMMITTEE.
WE VOTED ON THE TOP 20 ARTICLES
BACK IN FEBRUARY TO MATCH.
AND NOW THE ARTICLE SUMMARIES
AND DRAFT PUBLICATION ARE IN THE
WORKS.
WE ARE EXPECTING PUBLICATION
PRETTY SOON BUT DIDN'T QUITE
MAKE IT FOR THE COMMITTEE
MEETING.
BE EXPECTING TO HEAR ABOUT THE
PUBLICATION SHORTLY.
WE'LL GIVE THE IACC MEMBERS A
BRIEF PREVIEW OF THE DRAFT
BEFORE IT'S RELEASED TO THE
PUBLIC BUT WE EXPECT IT TO BE
HAPPENING T IING SOON.
WE WANTED YOU TO HAVE AN UPDATE
ON THAT.
NEXT, I WANTED TO TALK ABOUT
WHAT WE'LL BE DOING IN THE FINAL
YEAR OF THE CURRENT IACC THAT'S
GONE BY PRETTY FAST.
THE AUTHORIZATION FOR THIS
COMMITTEE ENDS SEPTEMBER 30,
2024.
AND WE WANTED TO TALK WITH YOU
ABOUT WHAT REMAINING BUSINESS WE
WANT TO COMPLETE BEFORE THAT
TIME.
ONE IS THE IACC SUMMARY OF
ADVANCES.
WE CONTINUE TO INVITE YOU ALL TO
SHARE YOUR ADVANCES AND THANK
YOU FOR THOSE WHO PROVIDED
NOMINATIONS THIS ROUND AND WE'LL
BE TALKING ABOUT THAT SHORTLY.
THAT'S A PROJECT WE'LL WANT TO
COMPLETE SO WE'LL HAVE YOU VOTE
ON THAT PROBABLY IN JANUARY 2024
TO GET THE PUBLICATION OUT
HOPEFULLY AROUND SPRING OF 2024.
THAT WOULD LIKELY BE THE LAST
ONE BEFORE WE GO OUT OF
COMMISSION UNLESS WE FINISH THE
2024 VERSION.
WE'LL BEGIN COLLECTING
NOMINATIONS FOR THE 2024 SUMMARY
OF ADVANCES AS WE GET INTO
JANUARY.
YOU CAN EXPECT THROUGHOUT YOUR
TERM YOU'LL BE SUBMITTING ITEMS
FOR THE SUMMARY OF ADVANCES.
WE CALLED IT 2021 TO 2023
BECAUSE IT TAKES THAT LONG TO
GET INPUT FROM ACROSS THE
COMMUNITY AND PUT TOGETHER A
PLAN.
IT WOULD BE DIFFICULT TO DO IN A
SINGLE YEAR.
WE FOCUSSED OUR EFFORTS AND MADE
A NICE CAN COMPREHENSIVE PLAN.
WHAT WAS DONE WITH THE LAST
COMMITTEE IS THEY PUT OUT A
COMPREHENSIVE STRATEGIC PLAN AND
FOLLOWING YEAR HAD A BRIEFER
UPDATE PROVIDED AND I'LL SHARE
THAT ABOUT THE POSSIBILITY.
WE'RE REQUIRED TO PUT OUT AN
UPDATE IN 2024.
WE TALKED ABOUT THE FACT THAT WE
HAD A REPORT ON CO-OCCURRING
PHYSICAL AND MENTAL HEALTH
CONDITIONS AND THEIR IMPACTS ON
HEALTH OUTCOMES FOR INDIVIDUALS
ON THE AUTISM SPECTRUM AND THIS
REPORT WAS PARTIALLY COMPLETED
AND YOU AGREED TO WORK ON THE
COMPLETION AND THE OFFICE HAS
BEEN BEHIND THE SCENES TRYING TO
GET THAT PROJECT TEED UP AS
WE'RE FINISHING UP OTHER REPORTS
AND THE STRATEGIC PLAN IS NOW
DONE.
THEY'LL BE WORKING WITH THE
CHAIR ON UPDATING THE DRAFT AND
WE'LL SHARE IT WITH THE IACC FOR
YOUR REVIEW.
WE CAME UP WITH A COUPLE OPTIONS
AND WANT TO SHARE THOSE AND GET
YOUR FEEDBACK .
OPTION 1 WOULD BE TO FINISH OUR
2024 STRATEGIC PLAN UPDATE.
WE COULD DO AN UPDATE AND FOCUS
ON SUMMARIZING IACC AB
ACTIVITIES RELATED TO THE
STRATEGIC PLAN.
THE 2018 TO 2019 STRATEGIC PLAN
IS LIKE THAT IT. HAS SECTIONS
THAT TALK ABOUT DISCUSSIONS
WE'VE HAD IN COMMITTEE ON
VARIOUS TOPICS IN THE STRATEGIC
PLAN AND AGENCY ACTION TESTS
THAT RELATE TO WHAT'S IN THE
STRATEGIC PLAN SO IT'S SHORT OF
A BRIEFER SUMMARY DOCUMENT BUT
DOESN'T INTRODUCE ANY
RECOMMENDATIONS.
OPTION 2, WHICH IS ANOTHER
POSSIBILITY IS THAT WE COULD
TAKE THE 2024 UPDATE AND MERGE
THE EXISTING CO-OCCURRING
CONDITIONS REPORT AND DO A
HIGHLIGHT ON CO-OCCURRING
CONDITIONS AND MAKE THAT OUR
PLAN UPDATE.
THOSE ARE TWO OPTION.
I DON'T KNOW IF ANYONE LOGGED
INTO ZOOM.
I THINK WHAT WE CAN DO FOR
PEOPLE NOT LOGGED IN THE ROOM IS
LOOK FOR HAND VOTES BUT WE HAVE
ARRANGED TO HAVE SOME OPTIONS
FOR YOU TO VOTE SO WE CAN GET
YOUR FEEDBACK ON WHAT YOU'D LIKE
TO DO AS A NEXT STEP.
I WANTED KNOW WHETHER YOU'D
PREFER
>> I REMAIN CONCERNED THAT WE
ESSENTIALLY LOST A YEAR DUE TO
POLITICAL ISSUES.
WE DID NOT MEET AND AS SUCH HAVE
NOT HAD A TRUE TERM.
THIS IN MY OPINION IS ESPECIALLY
PROBLEMATIC GIVEN A NUMBER OF
MEMBERS HAILED FROM UNDER
REPRESENTED GROUPS.
THE QUESTION IS THERE ANY
RECOURSE TO ENABLE THEM TO BE
EXT
EXTENDED.
>> TO ANSWER THE QUESTION ABOUT
THE TERM FOR PEOPLE ON THE
COMMITTEE.
AS YOU KNOW, THE COMMITTEE IS
AUTHORIZED BY LEGISLATION AND
THAT LEGISLATION HAS A SUN SET
DATE.
HOWEVER I KNOW IN THE ADVOCACY
COMMITTEE MANY ARE WORK ON THE
AUTHORIZATION TO HOPEFULLY
HAPPEN BEFORE THE SUN SET DATE.
THE EXISTENCE OF THE DIFFERENT
PROGRAMS IN THE LEGISLATION WILL
CONTINUE.
WITH THE TERMS OF THE MEMBERS OF
THE COMMITTEE THEY'LL END ON
THE END OF TERM AND THE CURRENT
LEGISLATION ALLOWS TWO TERMS FOR
FEDERAL MEMBERS JUST CONTINUE TO
SERVE WHOEVER IS NOMINATED TO
SERVE FOR THEIR AGENCY.
BUT FOR MOST THE PUBLIC MEMBERS
ON OUR COMMITTEE, I'VE ONLY BEEN
SERVING FOR YOUR FIRST TERM AND
THAT WOULD ENABLE YOU TO
CONTINUE IF YOU'D LIKE TO BE ON
THE COMMITTEE FOR LONGER BUT IT
WILL BE AN OPEN CALL TO THE
PUBLIC AND THE SECRETARY WILL
SELECT FROM ALL THE MANY
NOMINEES.
>> I DON'T HAVE A DOG IN THE
FIGHT FOR WHICH MILLION TO
CHOOSE BUT WHAT I'D LIKE US TO
FOCUS ON IN LIGHT OF OUR
SPEAKERS TODAY IS ADD AN ELEMENT
TO LIFE LONG TRAUMA.
WHETHER IT'S THE BIG "T" TRAUMA,
SEXUAL TRAUMA OR ABUSE OR THE
SMALL MORE PERSISTENT TRAUMA OF
MICROAGGRESSION AND LACK OF
SERVICES.
WHEN WHEN I LOOK AT THE AUTISM
POMP AND FAMILY MEMBERS A LOT OF
THE MENTAL HEALTH ISSUES WE'VE
EXPERIENCED ARE SPECIFICALLY
RELATED TO SYSTEMIC TRAUMA FOR
PERSONAL TRAUMA OR MY SON WAS
PULLED INTO A ROOM WITH TWO
TEACHERS AND TOLD NOT TO TELL
MOM AND IF WE GO TO THAT PART OF
THE LAND HE THINK THAT TEACHER
WILL BE THERE AND HAS A STRONG
PROCESSING SYSTEM.
WHEN HE THINKS OF TRAUMA, HE
VISUALIZES IT LIKE A MOVIE
REPLAY
IT.
THAT'S A TINY EXAMPLE BUT
AFFECTED HIM HIS WHOLE LIFE.
AS WE LOOK AT THE STRATEGIC PLAN
WE NEED TO COMMENT AND ADDRESS
THE EXPERIENCES IS A GREAT
ADDITION.
>> THERE'S AN OPPORTUNITY TO
PROVIDE MORE INFORMATION ON
TRAUMA AND WE'LL HAVE A
PRESENTATION TO HELP INFORM
THAT.
THANK YOU FOR SHARING THAT.
ANOTHER QUESTION, LARRY.
>> THANK YOU.
>> I THINK WE HAD EXTENSIVE
DISCUSSION AROUND LIFE SPAN AND
GETTING KIDS TO ADULTS WHICH I
THINK WE HAVE SUCCESSFULLY DONE.
I WOULD PUT AN EMPHASIS ON
PEOPLE WITH SEVERE AUTISM.
>> THANK YOU.
THAT CAN BE A PART OF EITHER
OPTIONS AND WHETHER IT'S A STAND
ALONE REPORT OR MADE INTO PART
OF THE STRATEGIC PLAN UPDATE IT
DOES INCLUDE SOME HIGH SUPPORT
NEEDS ISSUES BUT WE CAN
CERTAINLY EXPAND THAT AND MY
EXPECTATION IS THAT WHEN WE
SHARE THE THIS BACK WITH THE
COMMITTEE OUR TEAM HAS ALREADY
IDENTIFIED THEMES THAT COME FROM
OUR STRATEGIC PLAN WE THINK YOU
MAY BE INTERESTED IN
HIGHLIGHTING IN THE CO-OCCURRING
CONDITIONS REPORT BUT HAVE A
PROCESS YOU'LL SEE UPCOMING FOR
US TO GET YOUR INPUT SO WE CAN
EXPAND THAT REPORT.
ANY OTHER COMMENTS OR QUESTIONS?
SO I'D LIKE TO GET YOUR FEEDBACK
ON BETWEEN THE TWO OPTIONS WHICH
ONE YOU'D LIQUOR IF YOU HAVE
SOMETHING ELSE TO PROPOSE.
THE FIRST ONE IS A STRATEGIC
PLAN UPDATE THAT IS IT'S OWN
DOCUMENT FOCUSSED ON COMMITTEE
ACTIVITIES ACROSS THE BOARD THAT
RELATE TO THE STRATEGIC PLAN AND
WE WOULD BE PREPARING SUMMARIES
OF THESE ACTIVITIES IN THE
REPORT -- OPTION 1 WE WOULD HAVE
A SEPARATE STRATEGIC PLAN UPDATE
AND SEPARATE CO-OCCURRING
CONDITIONS REPORT.
THEY WOULD BE TWO REPORTS WE
FINISH IN THE NEXT YEAR.
OPTION 2 IS TO TAKE THESE TWO
THINGS AND MERGE THEM INTO ONE
AND CALL IT ALL A STRATEGIC PLAN
UPDATE AND HIGHLIGHTED EMPHASIS
ON CO-OCCURRING CONDITIONS AND
HEALTH OUTCOMES.
SO I WANTED YOU TO GO AHEAD AND
VOTE ON ZOOM OR IF YOU NEED TO
DO IT BY HAND IF YOU DON'T HAVE
ZOOM TO LET ME KNOW WHICH OF
THESE TWO OPTIONS WOULD YOU
PREFER.
DO YOU WANT US TO WORK ON TWO
REPORTS OR ONE REPORT?
>> OPTION 1 IS FOCUSSED ON
ACTIVITIES AND SEPARATE REPORT
FOCUSSED ON CO-OCCURRING
CONDITIONS.
>> IF YOU VOTED ONLINE DON'T
VOTE HERE.
BUT IF YOU HAVE NOT VOTED ONLINE
BECAUSE YOU'RE NOT ONLINE, GO
AHEAD AND RAISE YOUR HAND FOR
ONE, TWO OR THREE.
OPTION 2 IS A STRATEGIC PLAN
UPDATE FOCUSSED ON CO-OCCURRING
CONDITIONS.
MERGING THE TWO DOCUMENTS
TOGETHER.
[LISTING NAMES]
>> WOULD ANYONE LIKE TO VOTE FOR
OPTION 3 WHICH IS OTHER OR
ABSTAIN?
WE DON'T HAVE A TOPIC FOR MORE
REPORTS.
IT'S SOUNDING LIKE OPTION 2 IS
THE CHOICE TO MERGE THE
STRATEGIC PLAN UPDATE PROCESS
WITH THE CO-OCCURRING CONDITIONS
REPORT THAT'S PARTIALLY WRITTEN
ALREADY.
THANK YOU SO MUCH FOR SHARING
THAT WITH US.
THAT'S WHAT WE'LL BE WORKING ON.
WE'RE GOING TO BE LOOKING AT THE
DRAFT WE HAVE WITH JULIE TAYLOR
AND STARTING TO FILL IN WHERE WE
THINK SOME POSSIBLE GAP ARE
BASED ON THE WORK WE'VE ALREADY
DONE WITH THE STRATEGIC PLAN AND
WE WILL BE GATHERING INPUT FROM
THE COMMITTEE BY ONE OF THESE
SURVEY MONKEY SURVEYS TO GET YOU
TO PROVIDE US WITH WRITTEN
FEEDBACK OR IF YOU PREFER TO
TALK WITH US WE CAN ALWAYS
ARRANGE A CALL AND HEAR YOUR
FEEDBACK.
CAN I GO TO THE NEXT SLIDE.
THANK YOU FOR MAKING THAT
DECISION.
WE'LL MOVE FORWARD TO THAT.
ANTICIPATING EITHER ONE THEIR
OPTIONS WE'D LIKE YOU TO LET US
KNOW IF YOU'D LIKE US TO DO A
REQUEST FOR INFORMATION OR CALL
FOR PUBLIC COMMENT TO GET FRESH
INPUT FROM THE COMMUNITY ON THE
ISSUE AND IF YOU'D LIKE TO OUR
OFFICE WILL PUT ON THE STREET
AND COLLECT INFORMATION FROM
MEMBERS OF THE COMMUNITY TO
SHARE WHAT THEY THINK ARE THE
MOST IMPORTANT ISSUES RELATED TO
MENTAL HEALTH CONDITIONS.
>> I'M SEEING A LOT OF BUZZ
ACROSS THE COUNTRY WITH
NEURODIVERGENCE AND ADHD --
[INAUDIBLE]
>> ADHD IS ALREADY A TOPIC
WITHIN THE DRAFT REPORT WE HAVE
BUT I KNOW THERE'S BEEN A LOT OF
RESEARCH THAT'S HAPPED SINCE
2019 THAT'S NEW SO WE WOULD WANT
TO UPDATE EVERYTHING TO THE
LATEST IN RESEARCH.
BUT THAT IS AN AREA WE HAVE IN
THE CURRENT DRAFT.
>> CAN WE ALSO TALK ABOUT
PERHAPS DIAGNOSIS BECAUSE I'M
SEEING A LOT OF THAT AS WELL.
--
>> I THINK THAT'S AN IMPORTANT
ISSUE THE GROUP DEALT WITH IN
THE LAST ITERATION.
I DON'T THINK THAT CONFORMS TO
THE ISSUES AROUND COMORBIDITIES
OR CO-OCCURRING CONDITIONS WHICH
WOULD BE THE POINT UNLESS YOU'RE
TALKING ABOUT DIAGNOSIS OF
COMORBID AND COOCCURRING
CONDITIONS.
[INAUDIBLE]
>> YOU MAY WANT TO REITERATE THE
COMMENTS IN THE SURVEY PUT OUT
TO THE COMMITTEE.
CAN I SEE HANDS ON ZOOM.
>> I ALSO WANT TO MAKE A
SUGGESTION.
COULD IT CONSIDER MERGING IN
MAYBE A BRIEF REPORT FROM THE
OTHER WORK GROUP ON HOUSING
ISSUES AND HOMELESSNESS.
THAT WAS LEFT OVER FROM THE
PRIOR ITERATION OF THE COMMITTEE
THAT HAVEN'T BEEN ADDRESSED YES
AND WE HAD THE WORK GROUP AND
THERE WAS NO FINAL REPORT ON THE
HOUSING ISSUES AND HOMELESSNESS.
I THINK THAT'S A REALLY MAJOR
KEY FOCUS AND IT WOULD BE
HELPFUL TO BRIEFLY INTEGRATE
KNEE UPDATE.
>> HOUSING IS DIFFERENT AND IF
WE HAD A GENERAL STRATEGIC PLAN
WE PROBABLY COULD COVER THAT BUT
I WOULD SAY WE WOULD WANT STAY
FOCUSSED ON PHYSICAL AND MENTAL
HEALTH AND THERE'S A LOT OF
GROUND TO COVER THERE.
WE DID PUT OUT A SUMMARY FROM
THE HOUSING WORKING GROUP AND IN
THE FUTURE THE COMMITTEE COULD
ALWAYS COME BACK TO THAT MORE IN
DEPTH IF NEEDED.
>> WHEN WE TALK ABOUT THE
IMPLICATIONS OF THE TRAUMA OF
POVERTY AND BEING UNHOUSED
THERE'S WAYS TO GET ELEMENTS IN
THERE.
MAYBE IN THE NEXT STRATEGIC
PLAN.
>> IT INCLUDES YOUR FEEDBACK.
I WAS HAVING PROBLEMS EARLIER
TOO.
THIS IS OUR FIRST HYBRID MEETING
SO WE'RE TESTING OUT THINGS.
JUST TO INCLUDE ALL OF THAT ON
YOUR FORMS AND WHILE WE'RE
WORKING WITH DR. TAYLOR TO MAKE
THE INITIAL UPDATES WE WILL SEE
WHAT SEEMS TO FIT IN THE FLOW OF
THE THEME OF THIS REPORT.
SO I WANTED TO GET YOUR FEEDBACK
ON WHETHER YOU'D LIKE US TO
ISSUE AN RFI TO GET COMMUNITY
INPUT ON THE TOPIC.
CAN I SEE HANDS IN FAVOR OF US
DOING AN RFI TO GET INPUT FROM
THE PUBLIC.
>> SUSAN, BEFORE WE VOTE ON THAT
I BELIEVE WE RAN A PROCESS PRIOR
TO THE -- AND IT MIGHT INFORM
WHETHER WE WANT TO GET MORE
INPUT NOW OR NOT.
>> SO THE INPUT FROM THE
PREVIOUS RFI IS ALREADY IN THE
DRAFT WE GOT.
THE PURPOSE OF DOING A SECOND R
FIF WOULD TO BE GET ANYTHING
THAT WOULD BE TO GET ANYTHING
UPDATED.
HAS ANYTHING CHANGED IN TERMS OF
THEIR EXPERIENCES IN THE
COMMUNITY OR MORE AWARENESS
ABOUT THE TOPICS RELATED TO
PHYSICAL AND MENTAL HEALTH IN
LIGHT OF THE PANDEMIC WHICH IS
NOT SOMETHING THAT HAPPENED BY
2019.
IF WE THINK THERE'S ANYTHING NEW
FROM THE COMMUNITY THAT COULD BE
SHARED, WE'D COLLECT IT AND
ANALYZE IT AND MAKE SURE IT
MAKES A DIFFERENCE WITH THE
STRATEGIC PLAN BUT THE PREVIOUS
INPUT STARTING AT THE STRATEGIC
PLAN REPORT.
WE DID INCORPORATE FEEDBACK FROM
THE PREVIOUS RFI IN THE REPORT
ALREADY.
>> QUICK QUESTION.
WHAT WOULD BE THE TIME LINE ON
THAT ?
YOU ISSUE AN RFI AND THEN -- YOU
KNOW, THE GENERAL TIME LINE?
.
>> WE COULD KEEP IT OPEN I WOULD
SAY SIX TO EIGHT WEEKS.
I WOULD SAY EIGHT WEEKS TO
PUBLICIZE IT AND MAKE SURE
PEOPLE HEARD ABOUT IT AND
COLLECT THAT.
OUR GOAL IS TO GET THAT INPUT
BACK TO HOPEFULLY IN JANUARY SO
YOU CAN SEE WHAT WE WOULD GIVE
YOU AN ANALYSIS OF WHAT CAME
BACK AND SHARE THE COMMENTS WITH
YOU AS WELL.
AND WE USUALLY DO POST THOSE UP
ON THE WEBSITE.
>> WOULD YOU BE WILLING TO DO
THAT FOR THIS THAT WAY WE KNOW
IT'S OPEN AND CAN SHARE IT IN
OUR NETWORK?
THAT WOULD BE HELPFUL.
>> WE CAN CREATE THE SOCIAL
MEDIA GRAPHICS TO PUT IT ON YOUR
LINKEDIN OR WHATEVER YOU WANT TO
GET MORE INPUT.
>> THAT WOULD BE AMAZE.
>> WE CAN WORK ON THAT IF YOU'RE
INTERESTED IN DOING AN RFI.
MORENIKE.
>> NOTHING'S IN THE CHAT.
>> ONE OF THE THINGS I WOULD ADD
WHEN YOU MENTION COVID BASED ON
PRELIMINARY STUDIES THAT
AUTISTIC PEOPLE ARE MORE LIKELY
TO HAVE MORE KINDS OF CONNECTIVE
TISSUE DISORDERS AND THOSE ARE
ALSO LINKED TO CONDITIONS LIKE
POSTURAL TACHYCARDIA SYNDROME,
CHRONIC FATIGUE, IMMUNE
ACTIVATION THAT ARE SEEN AMONG
PEOPLE EXPERIENCING LONG COVID.
SO I THINK IT WOULD BE HELPFUL
TO SEE IF THERE SAY FELT SENSE
IN THE COMMUNITY THAT AUTISTIC
PEOPLE ARE AT HIGH RISK FOR LONG
COVID OR OTHER NEGATIVE
LONG-TERM OUTCOMES FROM COVID
AND OTHER INFECTIONS.
>> THANK YOU, SAM.
WE CERTAINLY IN DOING AN RFI WE
NORMALLY HAVE ONE OR MORE
QUESTIONS THAT WE PUT INTO THE
RFI SO WE COULD HAVE ONE THAT'S
TARGETED TOWARDS COVID AND INPUT
THAT MAY BE RELATED TO THAT AND
WE HAVE NOT COLLECTED THAT IN A
TARGETED WAY BEFORE.
ANY OTHER COMMENTS?
DENA.
>> I'M WONDERING AND FORGIVE ME
IF THIS IS NOT THE SPACE OR
APPROPRIATE PLACE FOR THIS, BUT
WHEN WE LOOK AT CO-OCCURRING
TRAUMA I'M WONDER IF WE NEED TO
MAKE CONTRIBUTION IN REGARD TO
PRIMARY AND SECONDARY
WAR-RELATED TRAUMA AS IT AFFECTS
PEOPLE WITH INTELLECTUAL AND
DEVELOPMENTAL CONDITIONS.
I CAN'T IMAGINE TO WHAT'S
HAPPENING TO PEOPLE
INSTITUTIONALIZED IN UKRAINE OR
SO MANY FRIENDS WITH CONNECTIONS
TO ISRAEL OR PALESTINE ARE
EXPERIENCING SECONDARY TRAUMA
AND I HEAR THEY'RE GOING TO BE
START POST THESE HORRIFIC THINGS
ON INSTAGRAM THAT CAN LEAD TO
OTHER KINDS OF TRAUMA.
I APOLOGIZE IF IT'S NOT
APPROPRIATE OR DOESN'T FIT HERE
BUT THAT'S JUST BEEN ON MY MIND
FOR A WHILE.
>> IF WE HAVE IT ON THE LIST TO
ITEMS TO WEAVE IN WE'D LOOK AT
THE LITERATURE TO SEE IF NEW
RESEARCH HAS BEEN PUBLISHED ON
THIS AND LOOKING TO COMMUNITY
INPUT WE'RE RECEIVING AND HOW WE
GET SOME UPDATES.
ANOTHER ITEM OUR TEAM NOTICED IN
LOOKING BEEN AT SOMETHING
WRITTEN IN 2019 IS THE COMMITTEE
MADE A STRONG SHIFT IN TERMS OF
EQUITY, DIVERSITY, INCLUSION AND
ACCESSIBILITY.
WE WOULD IMAGINE YOU MIGHT WANT
TO HAVE A LITTLE BIT MORE OF AN
EQUITY LENS ON THIS REPORT THAN
WAS CREATED IN THE PREVIOUS
VERSION OF IT.
SO THAT'S SOMETHING THAT WE'VE
ALREADY IN THESSED ME WAY WANT
TO ADD TO MAKE IT MORE COMPLETE.
ANY OTHER QUESTIONS BEFORE WE
GET YOUR TEMPERATURE READ
WHETHER OR NOT WE SHOULD GET AN
RFI?
>> CAN I GET HANDS RAISED ON HOW
MANY ARE INTERESTED IN DOING AN
RFI TO GATHER PUBLIC INPUT ON
ISSUES RELATED TO THE UPDATE?
ALL IN FAVOR.
?
EVERYONE IN FAVOR HAS THEIR
HANDS RAISED.
LET ME KNOW WHEN YOUR GOOD.
SO ANYONE OPPOSED TO DOING AN
RFI DOES NOT WANT TO RECEIVE
COMMUNITY INPUT AT THIS TIME?
ANYONE ABSTAINING?
LOOKS LIKE YOU VOTED TO HAVE AN
RFI.
WE'LL WORK ON DEVELOPING AN RFI
ALSO TAKING INTO CONSIDERATION
SOME OF THE THINGS YOU SAID HERE
THAT WOULD GATHER BROAD PUBLIC
FEEDBACK FOR THIS SO WE CAN MAKE
SURE THAT OUR REPORT IS
COMPLETELY UP TO DATE WITH THE
LATEST ISSUES THAT THE COMMUNITY
IS FACING AND INTERESTED IN.
I MENTIONED WE'D LIKE TO A
SURVEY WITH THE COMMITTEE BUT TO
GET YOUR CONSENT ARE YOU WILLING
TO FILL OUT A SURVEY ON WHAT
YOU'D LIKE TO SEE IN THE REPORT?
HANDS UP FOR ANYONE WHO IS IN
FAVOR OF RECEIVING AND
RESPONDING TO A SURVEY.
SOUNDS LIKE YOU'RE IN FAVOR AND
IT WAS AN EFFECTIVE WAY TO GET
YOUR SPECIFIC REFERENCES OR
WORDS THAT YOU SHARED TO HELP
UPDATE THE PLAN.
WE HAVE A DECISION ON THAT.
SO WE'LL BE WORKING TO CONTINUE
THE CO-OCCURRING CONDITIONS
REPORT AND FORM IT INTO THE
STRATEGIC PLAN UPDATE FOR 2024.
WE'LL PROVIDE YOU WITH THE
STATUS UPDATE IN JANUARY AND
YOU'LL BE HEARING FROM US AND
YOU'LL SEE SOME OF THE ITEMS
COMING OUT AND THANK YOU FOR
SHARING YOU WANT SOCIAL MEDIA
GRAPHICS AND OTHER THINGS TO
HELP US PUBLICIZE THIS ACROSS
THE COMMUNITY.
WE'LL WORK TO COMPLETE ALL
RECORDS BY SEPTEMBER 30, 2024
WITH THE OPPORTUNITY WE ARE
ALLOWED TO DO A BRIEF COMMITTEE
EXTENSION JUST TO COMPLETE PRIOR
BUSINESS AND SO IF WE NEED TO TO
GET YOUR INPUT ON A FEW THINGS
TO FINISH UP YOUR WORK WE WILL
ALSO DO THAT BUT I WILL UPDATE
YOU BACK ON THAT LATER.
SO GIVEN WE'RE A LITTLE BIT
BEHIND SCHEDULE WE'RE GOING TO
ASK OF THE COMMITTEE IF WE CAN
COME BACK TO THE SUMMARY OF
ADVANCES NOMINATIONS AT ANOTHER
TIME AT THE JANUARY MEETING
BECAUSE WE'RE BEHIND SCHEDULE
AND WANT TO MAKE SURE YOU HAVE
ENOUGH TIME FOR LUNCH.
YOU HAVE RESOURCE D -- RECEIVED
THOSE NOMINATIONS IN YOUR
PACKETS AND IF YOU HAVE FEEDBACK
WE WELCOME TO YOU SUBMIT WRITTEN
FEEDBACK IF THERE'S SOMETHING ON
THE LIST OR SOMETHING YOU FEEL
IS NOT MAYBE MEETING THE
STANDARD WE WOULD WANT FOR A
NOMINATION FOR THE SUMMARY OF
ADVANCES BUT WE CAN DO A MORE
EXTENSIVE DISCUSSION OF THIS IN
JANUARY TO CATCH UP.
SO WE WILL DO THAT AND NOW WE
WILL MOVE TO OUR NEXT ITEM OF
BUSINESS WHICH IS SPOTLIGHT ON
SUNFLOWER BEAKRY A LOCAL
BUSINESS THAT SUPPORTS
INDIVIDUALS WITH DISABILITIES
AND THEY'RE PROVIDING BOXED
LUNCHES FOR CERTAIN MEMBERS OF
THE COMMITTEE THAT ORDER FROM
THEM BUT WANTED TO HIGHLIGHT
THEIR ORGANIZATION AND THE WORK
THEY'RE DOING IN OUR COMMUNITY
FOR INDIVIDUALS WITH ZABLTH
FOR INDIVIDUALS WITH
DISABILITIES.
I'D LIKE TO INTRODUCE JOHN KATZ.
WOULD YOU LIKE TO GO UP TO THE
PODIUM?
>> THE, DR. D -- THANK YOU,
DR. DANIELS.
IT'S AN HONOR TO SHOWCASE WHAT
SOME OF OUR STUDENTS ARE ABLE TO
DO AND REALLY REIMAGINING WHAT
PEOPLE WITH LEARNING DIFFERENCES
SPECIFICALLY AUTISM CAN DO IN
THE WORKPLACE.
SUNFLOWER BAKERY WAS CREATED OR
FOUNDED 11 YEARS AGO.
IT HAS TAKEN EVERY BIT OF 11
YEARS TO WORK THROUGH WHERE WE
ARE NOW BUT WE'RE ON THE VERGE
OF BEING ONE OF THE LARGEST
WORKFORCE DEVELOPMENT FOR
SPECIFICALLY LEARNING
DISABILITIES IN MARYLAND.
WE HAVE A 70% EMPLOYMENT RATE
AFTER COMPLETION OF OUR PROGRAM
AND THE WAY WE DO THIS IS
SHOWCASING WHAT OUR STUDENTS CAN
DO NOT WHAT THEY CAN'T DO.
WE WORK WITH EMPLOYERS TO LET
OUR STUDENTS KNOW NOT ONLY THAT
THEY ARE NEEDED BUT THEY CAN DO
THE WORK RIGHT ALONG SIDE IF NOT
BETTER THAN MOST NEUROTYPICAL
YOUNG ADULTS.
WE GIVE OUR STUDENTS A
FOUNDATION IN LEARNING AND
GROWTH AND WE TEACH NOT ONLY THE
SKILLS ASSOCIATED WITH BAKING
AND HOSPITALITY AND THE SOFT
SKILLS THAT IS WHAT EVERYONE
NEEDS BEFORE GOING INTO WORK.
WE ARE UP EQ IN -- WE ARE UNIQUE
IN THAT I WENT TO CULINARY
SCHOOL AND I WOULD LIKE OUR
SKILLS THAN WHAT CULINARY SCHOOL
AND IT'S MORE BUILDING ON
FOUNDATION AND THAT JUST
THEORIES.
WE'LL LET YOU WATCH THE VIDEO
AND SEE OUR WORK IF THAT'S OKAY.
I APPRECIATE IT AND HOPE ANYBODY
WHO GOT A LUNCH, ENJOYS IT AND
WE'RE EXCITE AND READY TO SHOW
OFF OUR BAKERY BUT PLEASE ENJOY.
>> WE WANT TO GET PEOPLE READY
TO WORK AND SHOW UP ON TIME AND
BE ACCOUNTABLE AND TAKE
RESPONSIBILITY FOR THEIR
PRODUCTION LIST AND HOW TO
COMMUNICATE WITH THEIR
CO-WORKERS AND PEERS.
>> OUR GRADUATES HAVE WORKED
HARD FOR THE SOFT SKILLS FOR
EMPLOYMENT.
>> IT'S BEEN AN INCREDIBLE
EXPERIENCE WORKING WITH NOT ONLY
SUNFLOWER AND ADMINISTRATORS AND
DIRECTORS AND THE STUDENTS
THEMSELVES.
PEOPLE LIKE ME FEEL IMPORTANT
BECAUSE CAN'T WORK WITH THE
DISABILITY I HAVE AND WE FEEL
IMPORTANT BECAUSE WE FEEL LIKE
THEY CARE ABOUT US AND OUR
CAREERS.
>> AS A PARENT I WAS INVOLVED
FROM THE BEGINNING AND ABLE TO
GO TO MEETINGS AND UNDERSTAND
WHAT THEY'RE TRYING TO BUILD
WITH JULIA AND WENT THROUGH THE
PROCESS OF MAKING JULIA A MEMBER
OF SOCIETY AND HOLD A JOB AND
HAVE THE SKILLS AND AS A PARENT
THERE'S NOTHING LIKE SEEING YOUR
CHILD SUCCEED IN THINGS I NEVER
THOUGHT WERE POSSIBLE FOR HER.
>> THANK YOU.
IT LOOKS LIKE WE HAVE A
QUESTION.
>> I JUST WANT TO COMMEND ON
WHAT YOU'RE DOING.
I'M SEEING A RISE IN THIS AND
MORE BUSINESSES STARTING IT DO
THIS.
WE HAVE A RESOURCE AND JOB FAIRE
EVERY YEAR AND THEY COME IN AND
SERVE ALL THE COFFEE AND IT'S A
HUGE IMPACT ON PARENTS SEEING
THE POSSIBILITIES.
MY SON LAST YEAR GOT HIS FIRST
JOB AND GOT A RAISE AND
PROMOTION AT ONE YEAR AND I
CAN'T TELL YOU FOR A MOM AND DAD
HOW HUGE THAT IS IN OUR LIVES.
WE COMMEND YOU ON THE WORK
YOU'RE DOING.
THIS IS AMAZING WORK.
THANK YOU.
>> I'D LIKE TO THANK YOU ALL FOR
LEADING THE CHARGE AND
UNDERSTANDING AND DEVELOPMENT
AND WE DON'T EXIST WITHOUT
ORGANIZATIONS LIKE THIS LAYING
THE GROUND WORK SO WE APPRECIATE
YOU AND ALL YOU DID.
>> WE HAVE A COUPLE MORE
QUESTIONS OR COMMENTS FROM THE
COMMITTEE.
IVANOVA.
>> I'M IVANOVA SMITH.
MY QUESTION IS WHAT WORK ARE YOU
DOING TO HELP THE PEOPLE YOU
SERVE AND EMPLOYEE BECOME
MANAGERS IN YOUR COMPANY AND
BECOME ABLE TO TAKE ON A
LEADERSHIP ROLE WITHIN THE
COMPANY AS WELL.
IS THERE ANY EFFORTS IN THAT?
>> WE PROVIDE THE TRAINING AND
JOB SERVICES FOR YOUNG ADULTS
WITH LEARNING DIFFERENCES.
THEN WE HAVE 60 DIFFERENT
EMPLOYEE PARTNERS WITHIN THE
D.C. METROPOLITAN AREA WE WORK
WITH AND WE ENSURE THEY HAVE
EQUAL OPPORTUNITY FOR GROWTH AND
WE WORK WITH STUDENTS FOR THREE
YEARS TO ENSURE GROWTH PROMOTION
AND PROMOTION AND GROWTH I WANT
EVERYBODY TO THINK OF COMES IN A
NUMBER OF WAYS.
IT'S NOT ALWAYS IN ROLES AND
RESPONSIBILITIES BUT SOMETIMES
FAIR AND EQUITABLE PAY,
ADVANTAGES, BENEFITS AND HOURS
WORKED.
A LOT OF OUR STUDENTS START AT
PART-TIME AND THEN END UP
TRANSITIONING TO FULL-TIME.
WE CONTINUOUSLY TRACK OUR
STUDENTS FOR THREE YEARS AFTER
THE STATE FUNDING ENDS.
WE DO THAT ALL FOR FREE.
AND WE SELL OUR PRODUCTS TO
COVER THAT BUT IT'S REALLY
GETTING THEM INVOLVED IN THEIR
COMMUNITY BECAUSE WE HAVE TWO
LITTLE SHOP IN ROCKVILLE.
I'D LOVE TO HAVE MORE AND
HOPEFULLY IN THE FUTURE WE WILL
BUT IT'S NOT FEASIBLE FOR
EVERYBODY TO TRAVEL TO ROCKVILLE
TO COME TO US SO WE WORK WHERE
THEY ARE AND OUR PLAN IS TO
DEVELOP EMPLOYMENT PLANS TO
DEVELOP WHAT THEY'RE GOALS ARE
AND A 30-MINUTE COMMUTE DOOR TO
DOOR TO FIND A JOB.
>> ONE PERSON STATED EARLY ON
WHEN THERE WAS A PRODUCT WITH
INDIVIDUALS WITH DISABILITIES
PEOPLE WILL OFTEN PURCHASE THE
FIRST TIME FOR SYMPATHY, MAYBE
THE SECOND TIME BUT IF YOU'RE
GOING TO HAVE A SUSTAINABLE
BUSINESS YOU HAVE TO HAVE
QUALITY.
THESE FOLKS ARE IN OUR COMMUNITY
AND HAVE QUALITY AND PROVIDED
THINGS TO SO MANY DIFFERENT
LOCATIONS AND I'VE TALKED TO
PARENTS WHO ARE SO DELIGHTED TO
SEE THE PROGRESS OF INDIVIDUALS.
I TALKED TO A COUPLE INDIVIDUALS
AND THIS IS THE REAL DEAL AND
THEY'RE DOING A GREAT JOB.
THANK YOU.
>> I APPRECIATE THAT.
ALL OF OUR ORGANIZATIONAL
MEMBERS ARE INSTRUCTORS AND
TRAINED CHEFS FROM INDUSTRY
INCLUDING MYSELF.
RIGHT NOW OUR BIGGEST PROBLEM IS
WE'VE TURNED DOWN WHOLE FOODS AS
A VENDOR AND CISCO AND
U.S. FOODS BECAUSE OUR GOAL IS
TO TRAIN THE STUDENTS NOT PUMP
OUT A PRODUCT OVER AND OVER
AGAIN.
IT'S TO GIVE THE STUDENTS THEIR
EXPERIENCE AND GET THEM
EMPLOYED.
I APPRECIATE YOU SAYING THAT WE
THINK IT'S A REAL DEAL AND IF
YOU HAVEN'T BEEN TO OUR CAFE OR
BAKERY IT'S A REAL DEAL AND AS
LONG AS YOU SAY IACC YOU GET A
FREE CUP OF COFFEE TODAY AND 20%
OFF ADDITIONAL PURCHASES.
ENJOY AND YOU'LL BE TAKEN CARE
OF BY ONE OF OUR STUDENTS THAT
IS GRADUATED AND PAYING WHILE WE
WORK TO FIND A JOB I APPRECIATE
THE OPPORTUNITY AND THANK YOU
FOR YOUR WORK.
>> WE HAVE ONE ANOTHER COMMENT
THE U.S. DEPARTMENT OF LABOR,
SCOTT ROBERTSON.
>> THANKS, DR. DANIELS.
I WANT TO SAY THANK YOU FOR THE
IMPORTANT WORK YOUR ORGANIZATION
IS DOING.
IF THERE'S ANYTHING WE HAVE AS
FAR AS RESOURCE INFORMATION LET
ME KNOW THAT MAY BE AVAILABLE TO
YOU FOR SERVICE PROVIDERS AND
THE JOB SUPPORT.
MAYBE I CAN TOUCH BASE WITH YOU
AFTER THE MEETING IF THERE'S ANY
RESOURCES FROM OUR TECHNICAL
ASSISTANCE AND POLICY
DEVELOPMENT CENTERS THAT MAY
HELP SUPPORT YOUR WORK.
THANK YOU FOR THE WORK OF YOUR
ORGANIZATION.
>> WE APPRECIATE THAT AND HOPE
DR. DANIELS AND HUR -- HER TEAM
CAN GET US IN CONTACT.
>> THANK YOU, JOHN AND THE
ENTIRE SUNFLOWER TEAM FOR YOUR
WORK AND FOR BEING WITH US TODAY.
THANK YOU VERY MUCH.
THE NEXT SEGMENT IS TIME WE
DEVOTE TO ORAL COMMENTS AND
SUMMARY COMMENTS SUBMITTED
BEFORE WE DO THE ORAL COMMENTS
I'LL REMIND EVERYONE THAT YOU
EACH RECEIVED IN ADVANCE OF THE
MEETING THE -- THE ASSEMBLAGE OF
THE PUBLIC COMMENT MADE AND
SUBMITTED IN ADVANCE FROM MANY
MEMBERS.
WE'LL A SUMMARY OF THAT AFTER
ORAL PRESENTATIONS FROM PEOPLE.
WE HAVE TWO INDIVIDUALS WHO HAVE
ASKED TO GIVE ORAL COMMENTS TO
THIS COMMITTEE.
THEY'LL EACH BE ALLOTTED THREE
MINUTES TO GIVE THOSE COMMENTS.
AND THERE ARE ADDITIONAL WRITTEN
COMMENTS AS WELL FROM BOTH THE
INDIVIDUALS IF YOU'D LIKE TO
LOOK AT THEM.
AGAIN, NOW HERE AT THE MEETING.
THE FIRST PUBLIC COMMENTER IS
NICOLE CORRADO.
I HOPE I'M STAYING THAT
CORRECTLY AND APPEARING
VIRTUALLY.
NICOLE ARE YOU ON THE PHONE?
>> WE MAY NEED COME BACK TO HER
LATER IN THE SESSION.
>> I'LL ASK THE SECOND COMMENTER
TO COME TO THE PODIUM I BELIEVE
SHE'S IN THE ROOM.
>> PUBLIC SPEAKING IS NOT MY
FORTE AND I'M FROM NEW JERSEY
AND FORGIVE ME IF I GO OVER MY
ALLOTTED TIME.
I'LL DO MY BEST.
I'M NOT A Ph.D. OR M.D.
I'M A MOM OF FOUR BOYS.
ONE WHO HAD SEVERE AUTISM.
HE WAS DIAGNOSED WITH AUTISM,
EPILEPSY AND INTELLECTUALLY
DISABLED.
MY STORY IS A SAD AND TRAGIC
STORY.
HE PASSED AWAY IN 2021 IN AUGUST
ON THE 24th OF THE CARE WHILE
SEEKING MENTAL HEALTH HELP.
WE'RE A MILITARY FAMILY.
MY HUSBAND SERVED 30 YEARS OF
ACTIVE DUTY IN THE ARMY WHICH
CAME WITH MANY CHALLENGES
ESPECIALLY WITH A CHILD WITH
SPECIAL NEEDS.
HE WAS BORN IN TUSCANY, ITALY.
HE WAS A HEALTHY BABY.
HE WAS A HEALTHY BABY, I HAD A
HEALTHY PREGNANCY.
HE WAS A HAPPY BABY AND WHEN WE
MOVED BACK TO THE STATES I
STARTED TO NOTICE HE WAS NOT
DEVELOPING LIKE HIS OLDER
BROTHERS.
UPON TAKING HIM TO HIS
PEDIATRICIAN IN 2004 I WAS TOLD
I DIDN'T NEED TO WORRY.
SHE'S JUST THE SECOND BOY, HE'LL
BE FINE AND I KNEW MY SON WAS
NOT WHERE HE SHOULD BE.
SO I USED MY MOTHER INSTINCT AND
GOT HIM DIAGNOSED RIGHT DOWN THE
STREET AT THE NAVAL HOSPITAL AND
HE WAS DIAGNOSED ON THE AUTISM
SPECTRUM AND MY HUSBAND DEPLOYED
TO IRAQ ABOUT FOUR WEEKS LATER.
AND HE LEFT FOR OVER A YEAR AND
I HAD TO MANAGE AND TRY TO
UNDERSTAND THIS NEW JOURNEY OF
AUTISM AS BACK THEN IN 2004 WE
STILL WERE TRYING TO UNDERSTAND
AUTISM, JENNY McCARTHY WAS VERY
VERBAL ABOUT IT BACK THEN AND
THAT'S WHEN THE CONTROVERSY
STARTED WITH VACCINES.
I'M PRO SCIENCE AND VACCINES.
I HAVE FOUR TYPICAL AND HEALTHY
BOYS AND OUR JOURNEY WAS A VERY
DIFFICULT ONE.
AS ZACHARY DEVELOPED, WE FACED
MANY CHALLENGES OF THERAPY,
SCHOOLING, HEALTH CARE AND I WAS
VERY LUCKY TO GO AND MEET DOWN
WITH A CONGRESSIONAL PANEL TWICE
ABOUT TRI-CARE FIGHTING FOR
THERAPY FOR ZACHARY AND WHAT
MILITARY FAMILIES HAVE GO
THROUGH.
WE HAVE VERY SIGNIFICANT
CHALLENGES WITH MILITARY LIFE.
MOVING DEPLOYMENTS, EDUCATION,
THERAPY AND IT WAS A JOURNEY I
WAS VERY PASSIONATE ABOUT.
WHEN ZACHARY STARTED CONTINUING
TO GROW AND HIS CHALLENGES
BECAME VERY INTENSE,
AGGRESSION -- I REALIZED WE WERE
FAILING HIM IN GIVING HIM WHAT
HE NEEDED.
AND SO I CONTINUED TO FIGHT THE
SCHOOLS AND GET HIM WITH WHAT I
THOUGHT WAS THE BEST FOR HIS
LIFE.
IN 2013 MY HUSBAND RETIRED AND
WE MOVED FROM OUR Ft. MEADE FROM
OUR MILITARY FAMILY AND COVID
HIT MONTHS LATER.
I WAS FIGHTING FOR ZACHARY TO
STAY AT KENNEDY KRIEGER HIGH
SCHOOL.
IT WAS DIFFICULT AND HIS WORLD
FELL APART.
SO COVID WAS CHALLENGING FOR
MANY FAMILIES NOT JUST MINE AND
WE WERE LOST.
I REACHED OUT TO EVERY AGENCY
THAT WOULD LISTEN.
AND ZACHARY'S BEHAVIOR BECAME
INCREASINGLY WORSE.
IN 2020 I WAS TOLD BY HIS
PSYCHIATRIST HE NEEDS TO GO TO
SHEPHERD PRATT AND IN ORDER TO
GET THERE HE HAD TO GO TO E.R.
FIRST.
WE ADMITTED HIM TO E.R. IN THE
MIDDLE OF COVID WITH DOCTORS
TRAINED FOR EMERGENCIES NOT
TRAINED TO MENTAL HEALTH PATIENT
OR AUTISTIC ADULTS OR VIOLENT
AUTISTIC ADULTS.
THAT'S WHEN OUR JOURNEY STARTED.
HE WAS THERE FOR FOUR WEEKS
WITHOUT A WINDOW, SPEECH THERAPY
AND BASIC NEEDS, SUNLIGHT,
EXERCISE, HE WAS NOT GETTING.
ALL LONG I WAS FIGHTING WITH
EVERY AGENCY ASKING THEM FOR
HELP FOR A BED AT SHEPHERD
PRATT.
THERE ARE I BELIEVE STILL SEVEN
NEUROLOGICAL BEHAVIORAL BEDS AT
SHEPHERD PRATT FOR THE ENTIRE
REGION.
SO ALL OF THESE PATIENTS THAT
WERE WAITING TO GET MENTAL
HEALTH SERVICES DESPERATELY
NEEDED WERE NOT THERE AND
GETTING BEDS.
IN NOVEMBER OF 2020 WAS IN THE
E.R. FOR FOUR WEEKS.
I SAW HE WAS GETTING MOVED WHEN
I SAW HE WAS COVID TESTED AND
WAS NEGATIVE SO THEY MOVED HIM
TO SHEPHERD PRATT AND I WAS
HOPEFUL AND HAPPY HE'D GET
REGULATED AND GET SOME NORMALCY
BACK.
HE WAS ONLY HOME WITH US A
COUPLE MONTHS.
HE WAS ONLY AT SHEPHERD PRATT
FOR 10 DAYS.
THEY WERE ABLE TO AT BEST THEY
COULD STABILIZE HIM AND HE WAS
RETURNED TO US AND WE CONTINUED
WITH COVID AND HE WASN'T GETTING
THE SCHOOLING AND KENNEDY
KRIEGER AND THE OTHER SERVICES
HE WAS JUST NOT LIVING WHAT HE
WAS LIVING BEFORE COVID.
SO AGAIN IN JUNE OF 2021 AFTER
REACHING OUT TO THERAPISTS AND
DOCTORS AND SCHOOL AND DDA, ALL
THE AGENCY COULD HELP ME SAID
NEEDS IT GO BACK TO SHEPHERD
PRATT.
I WAS HOPEFUL THIS TIME WOULD
ONLY BE A COUPLE DAYS BUT HE
WAITED SEVEN WEEKS IN THE E.R.
AND WONDERING WHAT SHOULD WE DO?
I KNEW WE HAD TO LEAVE HIM TO
GET HIM THE HELP HE NEEDED.
AT THE SEVEN WEEK MARKET I SAW
ON MY CHART AGAIN HE WAS COVID
TESTED AND HE WOULD BE MOVED.
AT 10 DAYS AT SHEPHERD PRATT I
RECEIVED A CALL WITH MY SON THAT
I LOST MY SON.
I DIDN'T KNOW WHAT TO DO.
WE RELIED ON THE COMMUNITY AND
MENTAL HEALTH COMMUNITY TO HELP
US AND EVERYONE FAILED US.
WE WERE FAILED ACROSS THE BOARD.
AND I DON'T WANT ANOTHER FAMILY
TO HAVE TO GO THROUGH WHAT WE
WENT THROUGH.
SO I'M HERE TO TELL YOU ALL THAT
WE ARE DOING WHAT I THINK WE CAN
FOR THE AUTISM COMMUNITY BUT
THERE NEEDS TO BE MORE THAT HAS
TO BE DONE FOR OUR YOUNG ADULTS
AND CHILDREN.
OUR FAMILIES ARE STRUGGLING.
I'M GETTING PHONE CALLS AND
MESSAGES CONSTANTLY FROM OTHER
PEOPLE SAYING I'M LIVING THE
SAME NIGHTMARE YOU ARE LIVING
AND THERE HAS TO BE SOMETHING
FOR REAL CHANGE TO GIVE PEOPLE
THE REAL LIVES THEY DESERVE.
MY SON WAS HEALTHY BUT BESIDES
THE EPILEPSY, HIS AUTOPSY CAME
BACK HEALTHY HEART, LUNGS,
EVERYTHING WAS PERFECT FOR HIM.
HE SHOULD NOT HAVE DIED.
SO MY SON'S STOREY IS TRAGIC AND
OUR CHILDREN DESERVE TO LIVE
LIVE TO THEIR FULLEST POTENTIAL
ANY WAY I CAN TELL MY STORY AND
GIVE ADULTS AND THIS COMMUNITY
THE BEST OF LIFE THEY CAN LIVE,
I WOULD LIKE TO HELP IN ANY WAY.
>> THANK YOU.
I KNOW I'M PROBABLY OVER MY
TIME.
I DON'T KNOW IF ANYONE HAS
QUESTIONS.
>> TAKE A SEAT AND WE MAY.
>> THANK YOU.
>> BEFORE WE OPEN THE DISCUSSION
I WANTED TO CHECK AGAIN IF
NICOLE CORRADO WAS ON AND ABLE
TO CONTRIBUTE HER PUBLIC
COMMENTS ORALLY.
SO SORRY, WE SEEM TO BE HAVING
TECHNICAL DIFFICULTIES IN
ENSURING HER ABILITY TO TESTIFY
HERE.
I WOULD LIKE TO RECOMMEND THAT
EVERYONE LOOK AT HER COMMENTS IN
THE WRITTEN FORM.
AND WE'LL NEXT HAVE THE SUMMARY
OF WRITTEN COMMENTS AND THEN
ENGAGE IN DISCUSSION.
THANK YOU.
>> THANK YOU.
CAN WE GET THET NEXT SLIDE?
FOR THE SUMMARY OF WRITTEN
COMMENTS WE RECEIVED A NUMBER OF
COMMENTS, 100 COMMENTS SUBMITTED
ON THE TOPICS LETSED ON THE
SLIDES SO WE HAD 37 COMMENTS
THAT WERE REGARDING ADDRESSING
THE NEEDS OF AUTISTIC
INDIVIDUALS WITH HIGH SUPPORT
NEEDS AND THE NAMES OF ALL THE
COMMENTERS ARE LISTED BELOW.
AND BY THE WAY, EVERYONE HAS
THIS IN YOUR PACKETS.
THEY'RE ONLINE.
IF ANY LISTENING AUDIENCE THAT
WANTS TO READ THE TEXT OF THE
COMMENTS YOU CAN GO TO THE
PUBLIC COMMENT PACKETS AND READ
THEM.
WE ALSO HAVE 14 COMMENTS ON
RESEARCH AND SERVICES NEEDS,
RESOURCES AND POLICY
IMPLICATIONS.
WE HAD EIGHT COMMENTS ON
RESEARCH SERVICES AND SUPPORTS
FOR AUTISTIC ADULTS.
SIX COMMENTS ON THE OCCLUSION OF
PERSPECTIVES ON RESEARCH.
WE HAVE THREE COMMENTS REGARDING
EMPLOYMENT.
FOUR COMMENTS ON MENTAL HEALTH
RESEARCH SERVICES AND TREATMENT.
FIVE COMMENTS ON THE ROLE OF THE
IACC AND THE FEDERAL GOVERNMENT.
FOUR COMMENTS ON POTENTIAL
CAUSES OF AUTISM.
TWO COMMENTS ON INCREASING
AUTISM ACCEPTANCE AND REDUCING
STIGMA.
FIVE COMMENTS ON INCLUSION OF
UNDER REPRESENTED GROUPS WITHIN
THE AUTISM COMMUNITY.
ONE COMMENT ON THE EDUCATIONAL
NEEDS AND WORKFORCE TRAINING.
ONE COMMENT ON COMMUNICATION AND
ALTERNATIVE AND AUGMENTATIVE
COMMUNICATION TECHNIQUES.
AND ONE COMMENT ON PARENT AND
CAREGIVER SUPPORT NEEDS.
I BELIEVE THAT'S THE END OF THE
WRITTEN COMMENTS.
IS THERE ONE MORE SLIDE?
THERE'S SEVEN COMMENTS ON
CONCERNS AND MEDICAL PRACTICES.
CONCERNS ABOUT MEDICAL
PRACTICES.
ONE COMMENT ON LANGUAGE
REGARDING AUTISM AND ONE COMMENT
ON THE NEEDS OF THE DIRECT
SUPPORT PROFESSIONAL WORKFORCE.
SO THOSE ARE THE TOPICS THAT WE
RECEIVE PUBLIC COMMENTS ON.
THANK YOU SO MUCH TO EVERYONE
WHO WROTE IN.
OUR COMMITTEE RECEIVED THE
COMMENTS IN ADVANCE AND IS
INSTRUCTED TO GO AHEAD AND READ
THEM SO I KNOW PEOPLE COME
PREPARED AND HAVE ALREADY READ
THOSE COMMENTS AND WE ALSO MAKE
THEM TRANSPARENT TO THE PUBLIC
SO EVERYONE CAN SEE THEM SO I'LL
TURN IT BACK OVER TO DR. GORDON.
>> THANK YOU, I WANT TO ADD MY
THANKS TO THE PUBLIC COMMENTERS
AND ALERT ME IF MS. CORRADO
COMES ONLINE TO PROVIDE HER ORAL
COMMENTS.
NOW WE'LL OPEN THE FLOOR FROM
COMMITTEE MEMBERS ON ANY OF THE
PUBLIC COMMENTS MADE OR WRITTEN.
I SEE A HAND UP.
PLEASE GIVE US YOUR COMMENTS,
QUESTIONS.
>> HELLO, EVERYONE.
I TYPICALLY PREFER MESSAGES BUT
IT WOULD HAVE BEEN DIFFICULT TO
DO AS IT'S LONG.
THANK YOU.
I REVIEWED TO GET AN
UNDERSTANDING OF WHAT OUR
COMMUNITY IS SHARING AND NOTICED
THERE WERE SIX OVERARCHING
THEMES AND WANTED TO DISCUSS
THOSE AND FIRST THING I WANTED
TO BRING UP SIT NEEDS TO BE
EMPHASIZED MORE THAN A THIRD OF
THE READ OUTS FOR PUBLIC COMMENT
WE RECEIVED WERE SPECIFICALLY
RELATED TO INDIVIDUALS AND THEIR
FAMILIES WITH HIGH SUPPORT NEEDS
AND LEVEL 3 AUTISM PROFOUND
AUTISM IS THE ADMINISTRATIVE
TERM, 37 ALONE RELATED TO THAT.
THAT'S OF 100 COMMENTS.
I JUST WANTED TO HIGHLIGHT SOME
OF THE THINGS THAT WERE
MENTIONED BY THE FAMILIES OVER
AND OVER.
THERE WAS A LOT OF DISCUSSION
ABOUT THE BARRIERS THAT THEY ARE
FACING.
MANY PEOPLE SHARED A SENSE OF
LACK OF REPRESENTATION AND
VISIBILITY AND CAREGIVER OVER
WEALTH AND RESPITE AND FEARS IN
REGARD TO AGING AND NOT HAVING A
NUMBER OF HOUSING OPTIONS.
NO PROGRAMS FOR ADEQUATE
SUPERVISION.
STAFF ISSUES WHERE YOU CANNOT
HAVE FAMILY MEMBERS HIRED OR
CAN'T GET A ROOM AND ALL THESE
THINGS ARE RESULTED IN SUB
OPTIMAL HEALTH CARE AND A SENSE
OF ISOLATION FOR THE FAMILY AND
IMPACTS SAFETY.
SO MANY PEOPLE MENTIONED THINGS
SUCH AS INJURIOUS AND AGGRESSION
AND COMMUNICATION CHALLENGES AND
NO CONSISTENCY.
I WANT DIGNITY FOR MY CHILD.
WE ARE SLEEP DEPRIVED.
MY SON GETS BLACK EYES AND WE
TALK ABOUT WANDERING AND ALL THE
THINGS THEY'VE HAD TO TRY TO DO.
I THINK THE REASON I'M
EMPHASIZING AND I'LL BE MORE
BRIEF WHEN I GO THROUGH THE
OTHER SECTIONS.
I WANT TO MENTION THIS BECAUSE I
KNOW SOMETIMES PERCEPTION IS NOT
ALWAYS REALITY.
FOR EXAMPLE, THERE'S NOT BEEN A
SINGLE MEETING IACC MEETING
SINCE I'VE BEEN A MEMBER WHERE
THEY'RE TRYING TO INCORPORATE
THE NEEDS OF PEOPLE.
YOU'VE NEVER SET SAID THAT BUT
THAT'S WHO MY CHILDREN ARE AS MY
FAMILY AND I CAN READ BETWEEN
THE LINES AND DETERMINE FROM
CONTEXT YOU'RE ADDRESSING OUR
NEEDS AND TALKING ABOUT US EVEN
IF YOU DON'T SPECIFICALLY
MENTION US.
I WANT TO ENCOURAGE FAMILIES --
I KNOW YOU'RE BUSY AND
OVERWHELMED BECAUSE YOU'RE NOT
HEARING THE TERMS YOU'RE
ACCUSTOMED TO HEARING, DO NOT
FEAR YOU'RE NEEDS ARE NOT
IMPORTANT OR CONSIDERED BUT ALSO
KNOW WE'RE HEARING YOU AND WHAT
YOU SHARE.
WHAT YOU SHARED WAS IMPORTANT.
THESE THINGS ABOUT WANDERING
DEATH AND PROPERTY DESTRUCTION,
SELF-INJURY.
THESE THINGS ARE NOT ACCEPTABLE
AND DOESN'T MATTER IF YOU'RE A
THIRD OR 1% OF THE POPULATION IN
ADDRESSING THE OTHER AREAS.
AND PEOPLE TALKED ABOUT THE
UNIQUE AND UNADDRESSED
CHALLENGES OF UNDER REPRESENTED
GROUPS WITH INTELLECTUAL
DISABILITY AND REFUGEE, PEOPLE
OF COLOR, FOSTER CHILDREN.
AND SO FORTH.
PEOPLE TALKED A LOT ABOUT
SERVICES AND THE SYSTEMS
NAVIGATION AND HOW PEOPLE ARE
HAVING TO MANAGE THESE THINGS
AND THERE ISN'T ENOUGH CASE
MANAGEMENT OR ADEQUATE SHARED
DECISION MAKES, SERVICE CUT
OFFS.
PEOPLE CAN'T GET WHAT THEY NEED.
NOT ENOUGH SUPPORT WITH
COMMUNITY LIVING AND SEGREGATION
IN SCHOOLS AND NOT ADEQUATE
WORKFORCE AND REHABILITATION
PROGRAMS AND PEOPLE TALKED ABOUT
RESEARCH NEEDS AND WANTING TO
INCLUDE GROUPS INCLUDED BECAUSE
OF BECAUSE OF INTELLECTUAL
DISABILITY AND PRACTICAL BENEFIT
OF PARENTS OR AUTISTIC PEOPLE
PEOPLE SAID THINGS THAT HELP US
NOW NOT THINGS THAT ARE IDEAL
BUT RIGHT NOW AND PEOPLE SHARED
ABOUT MEDICAL TRAUMA.
WANTING HEALTH CARE PROVIDERS TO
BE BETTER EQUIPPED TO ADDRESS
THEIR NEEDS AND IDENTIFICATION
AND SERVICES ACROSS THE LIFE
SPAN.
IF YOU ALL SHARED -- THERE'S A
LOT HERE FOR US AND I WANT TO
CHALLENGE MYSELF AND MY
COLLEAGUES WE TALKED ABOUT THE
RESEARCH IN IACC MEETINGS.
I THINK WE DO NEED TO HONE IN
DEEPLY ON THESE ISSUES WITH
SERVICES BECAUSE THINGS FAMILIES
ARE SHARING I CAN RELATE TO
BEING A MOMMY SELF.
I CAN UNDERSTAND SOME OF THESE
THINGS ARE JUST NOT THERE.
THE SERVICES ARE JUST NOT THERE
FOR US.
AND YOU DO FEEL WHAT'S GOING TO
HAPPEN WHEN YOU GDIE.
WHAT WILL HAPPEN TO YOUR CHILD?
WE TALKED ABOUT WORK GROUPS AND
I HOPE THIS MAY BE SOMETHING WE
MIGHT CONSIDERING TRYING TO
ADDRESS IN A MORE DIRECT AND
IMPACTFUL WAY.
THANK YOU VERY MUCH.
>> EVERY TIME I HAVE THERAPY
I'LL HAVE A DECLINE AND WHEN YOU
HAVE COOCCURRING CONDITIONS OR
LOW MUSCLE TONE YOU NEED ONGOING
COMMITTED REGULAR THERAPY AND SO
I DO HOPE WE CAN TALK AT SOME
POINT ABOUT POLICIES TO SHIFT
THAT AND WHY AREN'T PROGRAMS
ACCESSIBLE TO PEOPLE CAN ACCESS
THEM SO THEY DON'T HAVE TO HIRE
PROFESSIONALS TO TEASE THESE
OUT.
IT'S FRUSTRATING.
THERE'S SEVERE CONSEQUENCES AS
YOU BROUGHT UP TODAY WHEN WE HAD
THOSE SYSTEM DELAYS.
I THING AS A BODY WE CAN START
TO DISCUSS WHAT KINDS OF DELAYS
PEOPLE ARE ENDURING.
THERE WAS TALK ABOUT RESTRAINT
IN PUBLIC SCHOOLS.
I THINK THAT NEEDS TO END.
MORE IMPORTANTLY IS WHEN SHE
SAID SHE LOOKED AND SAID I NEED
GOD TO TAKE CARE OF MY KID.
HOW MANY PEOPLE ARE NOT NOT
WORKFORCE BECAUSE WE HAVE
INADEQUATE SUPPORT FOR THESE
FAMILIES.
AND THEN I APPRECIATED ALL THE
COMMENTS AROUND THE UNDER
REPRESENTATION OF PEOPLE
ASSIGNED AT BIRTH AND THE AUTISM
RESEARCH.
WE CONTINUE TO BE THE LEAST
PROGRESSING IN TERMS OF
PREVALENCE IDENTIFICATION OF ANY
OF THE MINORITY POPULATIONS OF
COURSE WE HAVE
INTERSECTIONALITIES TO
MARGINALIZE MORE AND IN LIGHT OF
OUR LAST MEETING, AJ LINK AND
THEIR COMPREHENSIVE COMMENT ON
THE NEED FOR EARLY AND ONGOING
ACCESS TO AAC FOR MINIMALLY
SPEAKING, NON-SPEAKING PEOPLE
AND I KNOW MANY PEOPLE VERY
EVENTUALLY COMPETENT AND RELAXED
SETTING BUT WHEN THEY'RE
CONFRONTED WITH PRESSURE TO
CONFORM, IT'S A HEALTH CARE
SITUATION.
THEY'RE LANGUAGE EVAPORATES.
WHEN WE THINK OF AAC WE NEED TO
TALK ABOUT EARLY BUT ONGOING
ACCESS FOR THIS COMMUNITY.
THANK YOU FOR TAKING MY
COMMENTS.
>> THANK YOU, DENA.
I WANT TO THANK YOU AND MORENIKE
FOR COMMENTS MADE.
THE CDC DATA HAS SHOWN
TREMENDOUS STRIDES IN NARROWING
THE DIAGNOSIS FOR GROUPS OF ALL
KINDS.
THAT'S ONE THING AND SOMETHING
THE COMMITTEE TALKED ABOUT YEARS
AND YEARS AGO AND THERE'S STILL
MANY OTHER DISPARITIES BUT I
APPRECIATE YOU BRIEFLY
HIGHLIGHTING THAT FOR US.
>> I'M ECSTATIC WE'RE FINDING
PEOPLE OF COLOR WITH BETTER
REPORTING AND OUTCOME.
WHEN YOU LOOK AT HOW THE NUMBERS
HAVE INCREASED WITH 8 YEAR OLDS,
WE'RE SEEING 8-YEAR-OLD GIRLS
WILL NOT BE IDENTIFIED UNLESS
THEY'RE EXPRESSIVE IN THEIR
FEATURES.
>> STILL EIGHT OF RESOURCES AS
YOU POINT OUT DIFFERENCES IN
PRESENTATION AND OTHER ASPECTS
OF AUTISM IN INDIVIDUALS
ASSIGNED FEMALE AT BIRTH.
WE HAVE SCOTT IVANOVA AND JENNY
AND PAUL.
OKAY.
GO AHEAD, SCOTT.
>> THANKS, DR. GORDON.
I WANTED TO EXPRESS MY
SOLIDARITY WITH CHERYL AND THANK
YOU FOR CHERYL THAT PERSONAL
NARRATIVE OF THE LIVED
EXPERIENCE OF HERSELF AND FAMILY
AND WHAT HAD HAPPENED TO HER SON
AS FAR AS INADEQUATE SUPPORTS IN
MENTAL HEALTH IN THE SERVICE
SYSTEM AND I HOPE THAT COMES TO
INFORM SOME OF OUR DISCUSSIONS
AND LATER ON THIS AFTERNOON ON
THE EMPLOYMENT END, I JUST
WANTED TO EMPHASIZE THAT I
APPRECIATE THE COMMENTS ABOUT
BARRIERS AND CHALLENGES AND
ACCESS TO INCLUSIVE SUPPORTS AND
SERVICES TO ATTAIN AND MAINTAIN
EMPLOYMENT AND ADVANCING CAREERS
AND CAREER PATHWAYS FOR AUTISTIC
PEOPLE AND ESPECIALLY THE IMPACT
OF FOCUSES LIKE BURNOUT UNDER
STUDIED IN THE RESEARCH AND NEED
TO BE HIGHLIGHTED MORE BECAUSE
IT KEEPS AUTISTIC PEOPLE FROM
BEING ABLE TO HAVE FULL ACCESS
TO GAINFUL EMPLOYMENT.
THIS SUPPORTS ECONOMIC
PROSPERITY AND HIGH QUALITY OF
LIFE.
I'M GLAD THIS WAS HIGHLIGHTED BY
PUBLIC COMMENTERS AND WE TAKE
THIS TO HEART AT THE
U.S. DEPARTMENT OF LABOR.
>> THANK YOU, SCOTT.
IVANOVA.
>> THIS IS IVANOVA.
I ALSO WANT TO SAY THANK YOU TO
CHERYL AND HER SON.
I THINK IT'S IMPORTANT IN
LOOKING AT WHAT HAPPENED IN THAT
SITUATION IS NOT ONE SIZE FITS
ALL WITH PUBLIC HEALTH POLICY.
OR ANY POLICY THAT AFFECTS
SERVICES FOR PEOPLE WITH ,
INTELLECTUAL DISABILITY OR ANY
OTHER CO-OCCURRING CONDITIONS.
WE REALLY NEED TO MAKE SURE THAT
WHEN WE'RE MAKING PUBLIC HEALTH
POLICY THAT WE'RE HONORING THAT
NOT EVERYONE CAN DO THE SAME
THING AND THAT PROVIDERS STILL
NEED TO BE THERE FOR THE PEOPLE
THEY SERVE AND ISOLATING PEOPLE
HURTS PEOPLE.
I REALLY HOPE WE REFLECT ON THAT
AND MAKE SURE WHEN WE'RE TALKING
ABOUT SERVICES FOR PEOPLE WITH
DISABILITIES, AND PUBLIC HEALTH
THAT WE'RE NOT DEMANDING A ONE
SIZE FITS ALL BUT BUT A POLICY
THAT WORKS FOR DIFFERENT PEOPLE
AND HAS UNDERSTANDING THAT WE
ALL NEED DIFFERENT THINGS AND
DIFFERENT AUTONOMIES WHEN IT
COMES TO PUBLIC HEALTH.
I WANT TO ECHO THAT AND I'M SAD
AND SORRY FOR WHAT HAPPENED TO
CHERYL'S SON AND OTHERS WHO HAVE
GONE THROUGH THAT.
I'VE LOST SEVERAL FRIENDS THAT
ARE SELF-ADVOCATES WHO WERE ALSO
RESTRICTED AND PASSED AWAY
DURING THIS TIME.
HEARING YOUR STORY ENCOURAGES
ME.
THANK YOU.
>> THANK YOU.
JENNY.
>> THIS IS JENNY MEI PHAN I ECHO
WHAT COLLEAGUES HAVE STATED
ABOUT PUBLIC COMMENT AND THANK
YOU CHERYL AND IT RESONATES
BECAUSE WE'RE A MILITARY FAMILY
TOO AND HAVE HAD TO EXPERIENCE
GAPS IN SUPPORTS AND SERVICES.
BEING A MILITARY FAMILY AMONG
MANY OTHER HATS THAT WE WEAR
THANK YOU FOR SHARING AND I WANT
TO ACTUALLY BRING UP ANGIE'S
COMMENTS FOR WRITING IN AND KEEP
WRITING IN IF IT'S NOT GETTING
ENOUGH ATTENTION.
ANGIE BROUGHT UP AUTISM WAIVERS
MANY STATES HAVE UNDER MEDICAID
AND AS WE ALL KNOW MANY OF OUR
KIDS WHO ARE AUTISTIC ARE TRYING
AT LEAST THEIR FAMILIES ARE
TRYING TO GET THEM ON THE AUTISM
WAIVER AND SITTING ON WAITING
LISTS.
MY FAMILY INCLUDED.
WE WERE TOLD THAT WE WILL BE ON
A NINE-YEAR WAITING LIST AND MY
SON IS 13 YEARS OLD.
BY THE TIME HE IS ABLE TO GET ON
TO THE WAIVER HE'LL AGE OUT AND
I THINK WE'RE NOT ALONE.
MANY FAMILIES ARE LIKE THIS.
I LIVE IN MARYLAND NOW IN
FREDERICK COUNTY AND MY KIDS ARE
IN FREDERICK COUNTY PUBLIC
SCHOOLS.
SO ANGIE PLEASE REACH OUT.
WE MOVED A LOT.
WE MOVED FROM LOUISIANA TO IOWA
TO WISCONSIN AND THEN MARYLAND.
AND EVERY STATE HAS WAIVER TO
GET KIDS ON MEDICAID AND EVERY
STATE HAS A DIFFERENT TIME ON
WAITING LIST.
WISCONSIN WAS THE FASTEST.
WE GOT THREE MONTHS INTO
MEDICAID.
THAT WAS THE QUICKEST ON TO
MEDICAID AND NOW WE'RE BACK ON
THE WAITING LIST AND WE'RE NOT
ABLE TO ACCESS SUPPORTS AND
SERVICES.
SO TO AMANDA'S COMMENT ABOUT
CROSS-COORDINATION OF SERVICES
AND FUNDING, I ECHO AND AGREE
THAT THERE NEEDS TO BE BETTER
CONVERSATIONS AND COLLABORATIONS
ACROSS AGENCIES AND PROVIDERS
WHEREVER WE ARE.
BUT THERE'S A LOT OF KIDS WHO
CANNOT EVEN GET ON MEDICAID TO
GET SUPPORT AND SERVICE AND ON
WAITING LISTS.
WHAT ARE THEY DOING AND WAITING
FOR?
THEY'RE NOT GETTING ANY
SUPPORTS.
THIS IS OF A -- THIS IS SUCH A
CONCERN AND NEED MORE DISCUSSION
ON THIS AS A COMMITTEE.
>> TWO MORE COMMENTS PAUL AND
LIND
LINDSEY.
>> THERE'S ENORMOUS ISSUES WITH
THE ACCESSIBILITY OF SUPPORTS
NEEDED AND CAPACITY.
THERE JUST AREN'T ENOUGH OF
THOSE RESOURCES AND SUPPORTS
THAT ARE NEEDED.
ONE SMALL PART I WANT TO DRAW
ATTENTION TO IS THE PEDIATRIC
SUBSPECIALTY WORKFORCE AND A
REPORT FROM THE NATIONAL
ACADEMIES REPORT THERE'S NOT
ENOUGH DEVELOPMENTAL BEHAVIORAL
PEDIATRICS AND THEY'RE NOT
FAIRLY COMPENSATED SO PEOPLE
DON'T GO IN THOSE FIELDS.
WHO PARTICULAR RECOMMENDATIONS
IN THE NATIONAL ACADEMY REPORT
IS NUMBER ONE, MEDICAID NEEDS TO
BE REIMBURSED AT THE SAME LEVEL
AS MEDICARE.
PEOPLE AREN'T AWARE MEDICAID
PAYMENT A FRACTION OF WHAT
MEDICARE PAYMENTS ARE.
IT'S NOT THE FAULT OF CMS,
CONGRESS MUST APPROPRIATE THOSE
FUNDS SO EVEN STEVEN
REIMBURSEMENT PHYSICIAN SERVICES
CAN BE MADE AND THE SO-CALLED
RELATIVE VALUE SYSTEM WHICH IS
SO CORRUPT IS CALLED OUT IN THE
NATIONAL ACADEMY REPORT.
IT MUST BE THOROUGHLY REVISED SO
THE NEEDED SERVICE VALUED AND
THEREFORE REIMBURSED AN A FAIR
WAY.
>> THANK YOU, PAUL.
LINDSEY.
>> I WANT TO THANK CHERYL FOR
SHARING HER TESTIMONY.
I CAN ONLY IMAGINE HOW DIFFICULT
IT WAS TO GET UP AND SPEAK AND
IT'S HEARTBREAKING AND SOBERING
REMINDER IT'S AN ISSUE WE NEED
TO BRING MORE TO LIGHT.
AS A SIBLING WHO HAS HAD TO
SPEND AN ENTIRE LIFE TIME
ADVOCATING FOR A NON-SPEAKING
AUTISTIC BROTHER WITH HIGH
SUPPORT NEEDS TO BE CONNECTED TO
ADEQUATE HEALTH SERVICES, THE
STORY HITS HOME TO ME.
NO ONE IN OUR COMMUNITY SHOULD
HAVE TO GO THROUGH WHAT CHERYL
AND HER FAMILY HAS HAD TO GO
THROUGH.
IT'S IMPORTANT THAT WE REMEMBER
FAMILIES LIKE HER AND OTHER
ADVOCATES GOING THROUGH SIMILAR
ISSUES.
WHEN WE CONTINUE OUR DISCUSSION
ON AUTISM AND MENTAL HEALTH
RESEARCH AND SERVICES NOT ONLY
DO WE NEED TO FOCUS ON EXPANDING
AND IMPROVING MENTAL HEALTH
SERVICES TAILORED TO THE NEEDS
OF THE AUTISM COMMUNITY BUT WE
ALSO NEED TO FOCUS ON EDUCATING
AND EXPANDING OUR OUTREACH
EFFORTS IN INFORMING THE PUBLIC
ON WHAT INFORMATION RESOURCES
AND SUPPORTS DO CURRENTLY EXIST
FOR FAMILIES AND SELF-ADVOCATES.
SO TO REITERATE HER WRITTEN
REMARKS, WE NEED TO URGE OUR
MEDICAL COMMUNITIES TO HELP
ADDRESS AND FIX THIS PROCESS.
SO NO OTHER FAMILY OR INDIVIDUAL
HAS TO SUFFER THROUGH THIS.
THAT'S ALL I HAVE TO SAY.
THANK YOU.
>> THANK YOU, LINDSEY.
TO CLOSE OUT THE PUBLIC COMMENTS
WE'RE GOING TO HAVE TO READ THE
ORAL COMMENTS FROM NICOLE
CORRADO WHO TONS HAVE CHALLENGES
CONNECTING TO US.
>> WE'LL HAVE A SUMMARY OF HER
COMMENTS.
>> GOOD AFTERNOON, EVERYONE.
THESE COMMENTS ARE FROM NICOLE
CORRADO ON THE SUBJECT OF MOVING
OUT AS AN AUTISTIC ADULT.
SHE SAYS I LIKE MANY ADULTS HAVE
WANTED TO MOVE OUT INDEPENDENTLY
TO MY OWN HOME AS AN AUTISTIC
PERSON THIS WAS HARDER TO DO AND
THE AVERAGE PERSON.
I WAS ON ODSP WHICH IS A
DISABILITY SUPPORT PROGRAM,
UNEMPLOYED AND LIVING WITH MY
PARENTS AND SIBLINGS.
I HAD LIVED IN TORONTO ALL MY
LIFE BUT FOUND TORONTO TO BE
BUSY AND WANTED TO BE SOMEWHERE
ELSEWHERE I DIDN'T HAVE BAGGAGE
FROM MY PAST AND MOVING TO
ANOTHER CITY FELT LIKE THE ONLY
WAY TO MOVE FORWARD.
IT WAS DIFFICULT TO FIND
ANYTHING AFFORDABLE IN TORONTO
AND FOUND SOMETHING IN QUÉBEC.
IT FEELS DIFFERENT FROM WHERE I
USED TO LIVE WHICH FURTHER
DISTANCES MYSELF FROM NEGATIVE
ASSOCIATIONS WITH MY HOMETOWN.
THE FIRST APARTMENT I MOVED TO
DID NOT WORK OUT DUE TO PERSONAL
STRESSES.
MY PARENTS LATER FOUND A
BASEMENT APARTMENT ON FACEBOOK
MARKETPLACE IN A RESIDENTIAL
NEIGHBORHOOD THAT WAS OWNED BY A
LAID BACK PERSON WHO LIVES
UPSTAIRS.
HAVING LESS PEOPLE INVOLVED IN
THE RENTAL PROCESS WAS KEY TO
SUCCESS.
CONNECTING WITH THE RIGHT PEOPLE
ALLOWS ME TO ACCESS SUPPORT WHEN
I NEED IT.
I LIVE FIVE MINUTES FROM
RELATIVES WHO CAN SUPPORT ME.
BEING INDEPENDENT FROM MY
PARENTS INVOLVES BEING
INTERDEPENDENT WITH CARE
NEIGHBORS SOME OF WHOM ARE
NEURODIVERGENT THEMSELVES AND
WALK EVERYONE AND HAVING
EVERYTHING CLOSE IS CONVENIENT.
FOR THE MOST PART I FIND LIVING
ON MY OWN EXCITING AND
REWARDING.
I ENJOY GETTING TO KNOW MY
NEIGHBORS AND FOUND AN ACCEPTING
CHURCH TO ATTEND.
MEAL PLANNING IS A BIT OF A
CHALLENGE AS I HAVE TROUBLE WITH
MONEY AND OFTEN OVERSPEND AT THE
FARMER'S MARKET BUT I FIND THE
OUTDOOR FARMER'S MARKET LESS
OVERWHELMING THAN CONVENTIONAL
GROCERY STORES.
MY PARENTS STILL DRIVE IN FROM
TORONTO AND BRING ME GROCERIES
AND OTHER ESSENTIALS THOUGH I
WOULD LIKE TO GET EXECUTIVE
FUNCTIONING SUPPORT AND SHOPPING
WITH A FRIEND OR NEIGHBOR FROM
CHURCH.
STILL NEED TO FIND A SOURCE OF
INCOME AS I NO LONGER ON ODSP
AND RELYING ON MY PARENTS TO PAY
THE RENT, GROCERIES, TOILETRIES
AND OTHER ESSENTIALS.
FINDING A JOB AND SUPPLEMENTING
IT WITH DISABILITY PAY WOULD
TAKE SOME OF THE BURDEN OFF MY
PARENTS.
I STILL HAVE ISSUES WITH KEEPING
A GOOD SCHEDULE SINCE I DON'T
HAVE ANOTHER PERSON KEEPING ME
ON TASK.
TRANSITIONS FROM WAKE TO
SLEEPING AT NIGHT AND FROM
SLEEPING TO WAKING IN THE
MORNING IS HARD.
I HAVE BEEN WALKING TO A DAILY
CHURCH SERVICE.
IT KEEPS A ROUTINE AND SOCIAL
AND REDUCES MY ANXIETY.
THE DAILY EXERCISE IN THE
MORNING REMOVE SOME OF THE
STRESS I EXPERIENCE FROM THE
TRANSITION TO LIVING ALONE.
CREATING A ROUTINE AND
DEVELOPING GOOD TIME MANAGEMENT
IS SOMETHING I'M WORKING ON.
I HOPE TO CONTINUE TO MAKE
CONNECTIONS WITH THE COMMUNITY
AS I SETTLE INTO MY NEW LIVING
ARRANGEMENT AS AN INDEPENDENT
ADULT.
>> THANK YOU VERY MUCH, MS.
CORRADO.
HOPEFULLY YOU CAN HEAR THIS
THROUGH THE VIDEOCAST.
THANK YOU FOR READING THE
COMMENTS.
WE'LL TRANSITION TO OUR NEXT
AGENDA ITEM AND WE WERE GOING TO
TAKE A FIVE MINUTE BREAK AND
WE'LL TAKE A BREAK IN THE MIDST
OF THE AFTERNOON.
SO I WANT TO THANK EVERYONE FOR
THEIR WONDERFUL DISCUSSION AND
REMARK ON BEHALF OF THE
COMMITTEE THAT CLEARLY COMMITTEE
MEMBERS' REMARKS DURING THAT
DISCUSSION MAKE IT CLEAR THE
WRITTEN COMMENTS OVER THERE NOT
ALL READ ALOUD AS MS. CORRADO'S
ARE POURED OVER BY MEMBERS OF
THE COMMITTEE AND TAKEN QUITE
SERIOUSLY.
WE'RE NOW GOING TO MOVE TO FOCUS
ON AUTISM MENTAL HEALTH AND
MENTAL HEALTH ON AUTISM.
WE'RE GO TO HAVE TWO SEGMENTS.
THREE.
THE FIRST ON MENTAL HEALTH
RESEARCH AND THE SECOND ON
COMMUNITY PERSPECTIVES AND ON
MENTAL HEALTH NEEDS AND THE
THIRD ON MENTAL HEALTH SERVICES.
JOINING US FOR THE FIRST SESSION
IS DOCTORS MAZEFSKY AND
PROFESSOR OF PSYCHIATRY AT THE
UNIVERSITY OF PITTSBURGH.
DR. MATTHEW SIEGEL FROM TUFT'S
UNIVERSITY SCHOOL OF MEDICINE
AND MEMBER OF OUR COMMITTEE AND
DR. McDONELL AT THE UNIVERSITY
OF WYOMING AND DR. KELLY BECK
PROFESSOR OF PSYCHIATRY ALSO AT
THE UNIVERSITY OF PITTSBURGH.
THANK YOU THE FOUR OF YOU FOR
JOINING US AND DR. MAZEFSKY
YOU'LL START US OFF AND SORRY IF
I'M BUTCHERING YOUR NAME.
NOT GOOD WITH NAMES TODAY.
>> THANK YOU SO MUCH FOR HAVING
ME.
I THINK WE'VE GOT IT.
I THOUGHT I'D START BY GETTING
US ON THE SAME PAGE ABOUT WHAT
WE'RE TALKING ABOUT WHEN WE SAY
MENTAL HEALTH.
OF COURSE WE THINK ABOUT
CO-OCCURRING PSYCHIATRIC
CONDITIONS.
DIAGNOSED DISORDERS AND I THINK
WE WANT TO INCLUDE ASPECTS OF
EMOTIONAL AND BEHAVIORAL WELL
BEING AND SOME WILL BE EMOTION
DYSREGULATION, SELF-INJURY,
SUICIDALITY AND TRAUMA.
HOW COMMON ARE PSYCHIATRIC
CONDITIONS IN AUTISM?
I DEBATED WHAT I WAS GOING TO
SAY ABOUT THIS AND DECIDED TO GO
WITH MORE COMMON THAN NOT
BECAUSE THE RANGES ARE SO WIDE
AND UNFORTUNATELY THE RESEARCH
USES DIFFERENT MEASURES AND
CHALLENGES OF CONDITIONS IN
AUTISM AND LIKELY THE RATES
WOULD VARY IF WE LOOKED CLOSELY
WITHIN SUBGROUPS BASED ON I.Q.
OR AGE RANGE.
I THINK INSTEAD I'M GOING
HIGHLIGHT GENERAL CONCLUSIONS.
WE DO KNOW THAT DESPITE, ADHD,
DEPRESSION AND OCD ARE
INCREDIBLY COMMON IN AUTISM.
THERE'S SUGGESTION PSYCHOSIS AND
BIPOLAR DISORDER ARE MORE COMMON
IN AUTISTIC POPULATIONS.
THIS IS EXAMPLES WHERE WE HAVE
SUCH LITTLE RESEARCH IT'S ALMOST
IMPOSSIBLE TO SAY AND SOME WOULD
BE SUBSTANCE ABUSE AND EATING
DISORDERS.
I -- IN THINKING ABOUT
DISABILITY, LONELINESS AND
DIFFICULTIES WITH COMPETITIVE
EMPLOYMENT, LIVING INDEPENDENTLY
WE JUST HEARD ABOUT AND SUICIDAL
THOUGHTS AND THERE'S A PUBLIC
COMMENT THAT TOUCHES ON MANY OF
THOSE SAME THING.
AND BASICALLY MENTAL HEALTH IS
AN OPPORTUNITY TO IMPACT ALL OF
THESE THINGS BECAUSE MENTAL
HEALTH PLAYS A ROLE IN SOME OF
THESE OUTCOMES AND THEY IN TURN
IMPACT MENTAL HEALTH.
SO WE HAVE AN OPPORTUNITY TO
REALLY IMPROVE QUALITY OF LIFE,
AND DECREASE MORTALITY BY
FOCUSSING ON MENTAL HEALTH.
SO FOR A LITTLE BIT OF GOOD
NEWS, I THOUGHT I WOULD
HIGHLIGHT THE PROGRESS AND
MOMENTUM WE'VE MADE IN THIS
AREA.
I JUST DID A QUICK UPDATE SEARCH
LOOKING AT THE SEARCH TERMS OF
AUTISM AND SOME ILLUSTRATED KEY
TERMS RELATED TO MENTAL HEALTH
AND SOME OF THE CONDITIONS AND
SYMPTOMS WE'RE GOING TO TALK
ABOUT TODAY.
AND BASICALLY YOU CAN SEE THE
ATTENTION TO THE TOPIC IS
ESCALATING.
THESE ARE ILLUSTRATIVE AND I
WANTED TO MAKE A FEW POINTS.
HERE ON THE GRAPH WHAT YOU SEE
IS THESE ARE TOTAL NUMBER OF
PUBLICATIONS.
THOSE IN BLUE WERE PUBLISHED
BEFORE 2018 SO 2017 AND EARLIER
AND IN BLACK ARE PUBLICATIONS IN
THE LAST FIVE YEARS.
SO YOU CAN SEE CLEARLY IS THAT
ESPECIALLY IN TERMS OF EMOTION,
DYSREGULATION AND SUICIDE THE
DATA HAS BEEN IN THE LAST FIVE
YEARS AND POINT OUT TWO OTHER
AREAS WITH VERY RARE PUBLICATION
RATES, IMMIGRATION AND
SELF-INJURY, YOU DON'T SEE THE
SAME SORT OF UPWARD TRAJECTORY.
IT'S PRETTY EVENLY SPLIT BETWEEN
THE PAST FIVE YEARS AND PRIOR.
IS CLEARLY WE'RE NOT THERE YET
AND THERE'S MUCH TO DO.
WE'LL BE HEARING ABOUT THAT
TODAY.
ONE BIG AREA WE NEED TO FOCUS
ON, WE KNOW OUR RESEARCH IS NOT
REPRESENTATIVE ENOUGH OF THE
FULL SPECTRUM OF AUTISM
INCLUDING ALL I.Q. AND SPEAKING
ABILITIES AND ALL RACIAL ETHNIC
AND GENDER IDENTITIES AND
IMPORTANTLY THE FULL LIFE SPAN
AS MENTAL HEALTH IS NOT
SOMETHING JUST FOR CHILDREN,
JUST FOR ADULTS.
THE FULL LIFE SPAN NEEDS TO BE
CONSIDERED.
AND ALSO WE NEED TO DO A BETTER
JOB CONSIDERING ALL THE
DIFFERENT WAYS IN WHICH WE CAN
UNDERSTAND MENTAL HEALTH.
FROM BIOLOGICAL RESEARCH DOWN TO
MORE COMMUNITY ENGAGED RESEARCH.
I WANT TO END FROM A LETTER
FROM A PARENT MY DAUGHTER HAS
SELF-INJURIOUS BEHAVIOR AND
SUICIDALITY NO ONE SEEMS TO KNOW
HOW TO TREAT AND SHE'S BEEN
HOSPITALIZED MANY TIMES AND
MEDICATE AND WITH LOOKED AT MANY
PROGRAMS WHICH ARE STANDARD
TRADITIONAL THERAPY PROGRAMS
THAT HAVE A WIDE EVIDENCE BASE
AND UNIFORMLY TOLD US EITHER
THEY DON'T ACCEPT PATIENTS WITH
AN ASD DIAGNOSIS OR THE CBT OR
DBT CANNOT BE USED WITH AUTISM
PATIENTS AND I HEARD THIS
SENTIMENT SO MANY TIMES AND IT'S
HEARTBREAKING AND A GOOD EXAMPLE
OF WHAT FAMILIES ARE FACING AND
INDIVIDUALS SEEKING MENTAL
HEALTH CARE.
WE NEED TO DO A BETTER JOB IN
TRANSLATING TO PRACTICE AND
DOING IT RAPIDLY.
SO WITH THAT -- I'M NOT GOOD AT
ADVANCING THE SLIDES WITH THIS
THING.
AND WITH THIS COMMENT IT'S NOT
ALWAYS EASY BUT ANY MOUNTAIN CAN
BE CLIMBED SO WE HAVE OUR
CHALLENGE AND NOW I'LL SHIFT TO
THE NEXT PART OF RESEARCH TALKS
STARTING WITH ME FOCUSSING ON
TOPICS THAT HAVE RECEIVED LIMIT
ATTENTION THUS FAR.
NOW I'LL TALK ABOUT OUR RESEARCH
IN THE REACT PROGRAM FOR
REGULATION OF EMOTION IN
AUTISTIC CHILDREN, TEENS AND
ADULTS.
AND OUR OVER ALL MISSION IS TO
IMPROVE MENTAL HEALTH AND
WELL-BEING FOR AUTISTIC PEOPLE
ACROSS THE LIFE SPAN.
I'LL PRESENT FOR OUR ENTIRE
TEAM.
THESE ARE MY DISCLOSURES.
I'M GOING TO START BY ANCHORING
US IN WHAT IS EMOTIONAL
DYSREGULATION CONTROLLING THE
LENGTH OF OR STRENGTH OF
EPOTIOEPOT
EPOTION -- EMOTIONAL RESPONSE.
EMOTION DYSREGULATED WE FOUND IT
TO BE ASSOCIATED WITH A RANGE OF
PSYCHIATRIC CONDITIONS AND OTHER
ASPECTS OF MENTAL HEALTH.
SOME EXAMPLE DEPRESSION,
ANXIETY, AGGRESSION AND
SUICIDALITY ARE HIGHER AND YOU
SEE MORE PSYCHIATRIC
MEDICATIONS, HOSPITALIZATIONS,
E.R. VISITS AND POLICE CONTACT
WITH HIGHER DYSREGULATION.
IN OUR JOURNEY TO ADDRESS THIS
WE STARTED LOOKING FOR A WAY TO
MEASURE THIS THAT WORKS AND
DEVELOPED THE EMOTION
DYSREGULATION INVENTORY.
THE FIRST IS REACTIVITY WHICH IS
THE IDEA OF NEGATIVE EMOTIONAL
REACTIONS TRA -- THAT COME ON
RAPIDLY AND DYSPHORIA MORE OF A
LACK OF POSITIVE EMOTION AND
GENERAL UNEASE.
WE STARTED DEVELOPING SOMETHING
THAT RESEARCHERS, EDUCATORS AND
SOME PARENTS ARE USING
THEMSELVES TO BE ABLE TO REALLY
UNDERSTAND AND TRACK EMOTION
DYSREGULATION IN A VARIETY OF
CONTEST IN CLINICAL RESEARCH AND
CLINICAL CARE.
SO WE STARTED WITH THE EDI FOR
AGES 6 AND ABOVE.
FIVE YEARS AGO AND I'M PROUD TO
SAY WE MADE A LOT OF PROGRESS
SINCE AND IT'S NOW BEING USED IN
45 COUNTRIES WORLDWIDE.
AND FOUR MONTHS AGO WE PUBLISHED
A YOUNGER VERSION FOR 2 TO 5
YEARS AND FINISHED A SELF-REPORT
FOR 11 THROUGH ADULTHOOD.
IT'S VALIDATED IN MANY
POPULATIONS AND WE HAVE
PUBLISHED THIS EARLIER ABOUT THE
53% OF AGES 6 TO 17-YEAR-OLD
LOSS OF REACTIVITY AND THIS IS
PRESENT EARLY IN CHILDHOOD WITH
RATES AT 58%.
AND IMPORTANTLY THESE NUMBERS
ARE FOUR TIMES HIGHER THAN
NON-AUTISTIC POPULATIONS.
WITH DYSPHORIA YOU ALSO SEE HIGH
RATES TWO TO THREE TIMES MORE
THAN AUTISTIC POPULATION AND
STARTING EARLY.
I DIDN'T HAVE TIME TO PUT IT IN
THE SLIDES BUT I RAN THIS
YESTERDAY AND OUR SELF-REPORT
VERSION WE SEE 50% REACTIVITY.
THAT'S AGES 11 TO 83 TO I STILL
HAVE TO BREAK THAT DOWN TEENS
VERSUS ADULTS.
TO OTHER EXAMPLES IS LOOKING AT
YOUNG CHILDREN AND REACTIVITY
WAS THE STRONGEST PREDICTOR OF
AGGRESSION MORE THAN AUTISM AND
ADHD AND YOU FIND NO LONGER HAVE
SPEAKING ABILITY OR INTELLECTUAL
ABILITY.
ALSO LOOKING AT SELF-INJUR
SELF-INJURYIOUS -- INJURIOUS
BEHAVIOR AND HALF THE TIME IT'S
OBSERVABLE AS THE SELF-INJURY
TIME AND BEFORE AND AFTER.
THIS IS AN IMPORTANT POINT
BECAUSE IF YOU LOOK AT THE
NON-MEDICATION TREATMENT OPTIONS
THEY TEND TO STILL BE
BEHAVIORAL.
I THINK WE'RE MISSING A PIECE BY
NOT CONSIDERING THE ROLE OF
EMOTION DYSREGULATION AND
IMMIGRATION AND SELF-INJURY AND
IT'S A CHANCE TO IMPROVE THE
EFFECTIVENESS OF OUR
INTERVENTIONS.
I WANT TO ACKNOWLEDGE IT'S NOT
ALL EMOTION DYSREGULATION.
YOU CAN ALSO SEE THAT HERE AND
WE HAVE A PAPER WE'RE GETTING
READY TO SUBMIT.
WHEN WE LOOKED AT DIFFERENT
PREDICTORS FOR TYPES OF
SELF-INJURIOUS BEHAVIOR AND SOME
ARE RELATED TO EMOTIONAL
DYSREGULATION AND SOME TO
MEDICAL COMORBIDITIES.
CERTAINLY AN AREA WE NEED TO
CONTINUE TO LOOK MORE INTO.
MOST THE RESEARCH I SUMMARIZED
RAPIDLY IS ON CHILDREN AND WE
ALSO ARE NOW FOCUSSING A LOT OF
EFFORTS ON ADULTHOOD AND
UNDERSTANDING MENTAL HEALTH
OUTCOMES IN ADULTHOOD WITH OUR
NEW NIMHD CENTER OF EXCELLENCE.
OUR CENTER HAS A STRONG FOCUS IN
SUICIDE.
I'M PUTTING A QUOTE HERE, I
HATED HOW EVERYTHING WAS SO HARD
FOR ME THAT WAS EASY FOR
EVERYONE ELSE AND THINGS ARE
EASY FOR ME WERE NOT VALUED.
I WAS MISERABLE AND NO LONGER
WANTED TO BE ON THIS EARTH.
THOSE SENTIMENTS WE ARE NOW
SEEING LIKE HIGH RATES OF
SUICIDE NOW THAT IT'S BEEN
FINALLY GETTING SOME RESEARCH
ATTENTION.
SO IN OUR CENTER WE'RE FOCUSSING
STRONGLY ON SUICIDE IN EVERY
PROJECT BUT I JUST WANT TO
ACKNOWLEDGE WE'RE HOPING TO
REALLY UNDERSTAND THE FULL
SPECTRUM OF MENTAL HEALTH IN
ADULTHOOD SO WE'RE LOOKING AT
THOSE WHO HAVE PERSISTENT OR
CURRENT SUICIDAL THOUGHTS AND
BEHAVIORS INCLUDING MANY PAST
ATTEMPTS AND DIFFERENT FROM
SOMEONE WHO HAS FLEETING SUICIDE
THOUGHTS AND HOW THAT REL
RELATES TO OTHER MENTAL HEALTH
OUTCOME AND MANAGE TO FLOURISH
AND HIGHLIGHT SATISFACTION.
WE'RE USING INTERVIEWING,
SELF-REPORT AND EVERYTHING UNDER
THE SUN, DISCRIMINATION, OTHER
STRUCTURAL FACTORS OF LIFE AND
WE NEED TO MAKE RAPID PROGRESS
IN THE AREA AND NEED TO HAVE A
WAY TO UNDERSTAND A RANGE OF
SUICIDA
SUICIDALITY.
WE DEVELOPED THIS MEASURE CALLED
THE AUTISM SUICIDALITY INVENTORY
WORKING WITH RESEARCHERS AND
THOSE WITH SUICIDE, PERSONAL
SUICIDE EXPERIENCE.
WE DEVELOPED 300 ITEM COVER WHAT
YOU CAN THINK OF THAT MIGHT BE
RELATED TO SUICIDALITY INCLUDING
WHAT'S CONNECTED IN THE
NON-AUTISTIC AND HOPE TO SPUR
RESEARCH IN THE TOPIC.
WE DID A DOD FUNDED TRIAL WITH
12 TO 21-YEAR-OLDS WITH VERBAL
I.Q. OVER 70 AND FIND TWO-THIRDS
WERE CATEGORIZED AS RESPONDERS
BASED ON IMPROVEMENT AND EMOTION
DYSREGULATION COMPARED TO ONE
THIRD IN COMPARISON THERAPY AND
WE ALSO DEVELOPED A VERSION THAT
COULD BE USED IN THOSE WHO HAVE
LOWER I.Q.s AND MAY NOT BE
SPEAKING.
AND I WAS EXCITED PUTTING SLIDES
TOGETHER FOR THE FIRST TIME WITH
THESE BACK TO BACK SEEING THE
RESPONSE RATE WAS ACTUALLY
IDENTICAL.
WE'RE EXCITE ABOUT THE POTENTIAL
OF THESE.
I WANT TO END WITH WHERE WE'RE
GOING AND A SNAPSHOT OF OUR
CURRENT WORK.
LED BY JUSTIN NORTHROP LOOKING
AT EARLY DEVELOPMENT OF
DYSREGULATION AND PARENT
REGULATION.
WE HAVE COMBINED THE TWO
VERSIONS OF EASE INTO ONE USER
FRIENDLY MANUAL AND
UNDERSTANDING WHAT WORKS IN THE
REAL WORLD WITH COMMUNITY
CLINICIANS.
EXCITED DOWN THE ROAD TO PULL
THE DATA TOGETHER AND I'M SURE
YOU'RE GOING TO FIND SOME THINGS
WE THOUGHT WOULD BE RELATED TO
MENTAL HEALTH BUT BECAUSE WE'RE
HAVING SUCH BROAD STROKES I'M
SURE WE'LL IDENTIFY NEW FACTORS
TO CONSIDER IN IMPROVING ADULT
MENTAL HEALTH OUTCOMES.
HOPEFULLY I DID THAT RAPIDLY AND
I WANT TO ACKNOWLEDGE THE
FACULTY AND POSTDOCS WHO DID
MOST THE WORK I PRESENTED AND
OUR ACE LEAD INVESTIGATORS AND
LEAD PARTNERS.
AND MANY OTHER KEY
COLLABORATORS, STAFF AND THIS IS
NOT THE WHOLE LIST BUT THANK YOU
TO ALL WHO HAVE SUPPORTED THIS
WORK.
I WILL TURN IT OVER TO MATT
SIEGEL.
>> I DISAPPOINT WANT TO
OVERSTATE HOW IMPORTANT
DR. MAZEFSKY'S WORK HAS DONE IN
DEVELOPING INTERVENTIONS.
AS YOU ALL KNOW IT TAKES A LONG
TIME TO MOVE FROM EVIDENCE FOR
AN INTERVENTION INTO THERAPISTS
IN THE COMMUNITY ABLE TO DO IT
AND I ENCOURAGE EVERYONE TO
SUPPORT HER AND THAT TEAM IN
TRYING TO MAKE THAT TRANSLATION
AND NOT TAKE 20 YEARS WHICH IS
WHAT IT USUALLY DOES.
WITH THAT SAID I'LL TALK ABOUT
SELF-INJURY AND AGGRESSION.
I SEE WHAT YOU MEAN, NOT EASY TO
ADVANCE.
NOT JUST YOU.
IS AGGRESSION AND SELF-INJURY
QUITE COMMON DEPENDING ON THE
SAMPLE YOU'RE LOOKING AT AND
GIVE A COUPLE EXAMPLES.
SO AGGRESSION AND WHEN WE SAY
AGGRESSION IN THIS WORLD WE'RE
NOT TALKING ABOUT VERBAL
AGGRESSION.
VERBAL AGGRESSION DOES NOT BRING
YOU TO THE ATTENTION OF THE
SERVICES I'M TALKING ABOUT.
I'M TALKING ABOUT PHYSICAL
AGGRESSION.
THERE WAS A PARENT SURVEY SO
CLINICALLY REFERRED KIDS AND 53%
OF PARENTS SAID YES, THEY'RE
CURRENTLY DISPLAYING PHYSICAL
AGGRESSION.
EVEN IN A CLINICALLY REFERRED
SAMPLE'S A COMMONLY OCCURRING
PROBLEM IN OUT-PATIENT TREATMENT
CLINIC IN THE NETWORK.
SELF-INJURY VERY DIFFERENT
SOURCE THIS IS THE REVIEW OF
8-YEAR-OLDS THAT COMES OUT EVERY
TWO YEARS AND HELPS GIVE BEST
PREVALENCE DATA AND THAT RECORD
REVIEW PRIMARILY, OVER A QUARTER
WERE IDENTIFIED AS HAVING
SELF-INJURIOUS BEHAVIOR AND
THAT'S REMARKABLE AS A COMMUNITY
SAMPLE.
THE IMPACT I'LL NOTE WE HEAR
REPEATEDLY AND HAS BEEN SHOWN IN
THE LITERATURE THE IMPACT MANY
FAMILIES WILL SAY OF AGGRESSION
IS GREATER THAN THE CORE
FEATURES OF AUTISM.
FAMILIES WILL SAY WE CAN HANDLE
THE AUTISM BUT NOT THE
AGGRESSION AND THAT'S REFLECTED
IN THE LITERATURE.
THIS AREA, AGGRESSION,
SELF-INJURY CAN BE SEEN ACROSS
THE SPECTRUM AND IS A PARTICULAR
CONCERN FOR THOSE WITH PROFOUND
AUTISM ALSO SOMETIMES CALLED
SEVERE OR LEVEL 3 AUTISM OR FIX
WITH CO-OCCURRING DISABILITY OR
LIMITED ABILITY.
THERE WAS A REPORT THAT SHOWED
26.27% BY THEIR DEFINITION MET
THE CRITERIA OF PROFOUND AUTISM.
WHEN YOU LOOK AT THE REPORT IT'S
NOTABLE THOUGH THE DEFINITIONS
FROM THE LANCET COMMISSION
FOCUSSED ON ADAPTIVE
FUNCTIONING.
THE ABILITY TO BE ON YOUR OWN IN
A HOME WITH OR WITHOUT ADULT
SUPPORT.
THE REPORT FROM THE CDC DIDN'T
USE THAT IT USED I.Q. AND
COMMUNICATION RELATED CONCEPTS
BUT THE POINT I -- THE REASON I
BRING UP THE POINT IS I THINK
THE 26.7% IS AN UNDER ESTIMATE.
BECAUSE IT WAS BASED ONLY ON
I.Q. AND COMMUNICATION.
I THINK MANY OF US EXPERIENCE IN
AUTISM THAT REGARDLESS OF I.Q.
OR COMMUNICATION ADAPTIVE
FUNCTIONING CAN BE CHALLENGED OR
CHALLENGING.
ALSO IN THIS REPORT, IT WAS
SHOWN THAT AGGRESSION IS MORE
LIKELY IN THIS PROFOUND AUTISM
GROUP WHICH IS SOMETHING WE KNEW
AND SIB WAS SIGNIFICANTLY MORE
LIKELY.
A TAKEAWAY I GIVE IN VIRTUALLY
EVERY TOPIC IS THE CONCEPT.
I'D LOVE PEOPLE TO TAKE THIS
AWAY, AGGRESSION AND SELF-INJURY
ARE A FINAL SYMPTOM OR OUTCOME.
THEY'RE NOT A DISORDER.
THEY'RE NOT A DIAGNOSIS AND THE
REASON I PUT IT THAT WAY AT
LEAST YOU HAVE TO LOOK AT
UNDERNEATH OR IN FRONT OF THAT
OR HOWEVER YOU WANT TO PHRASE
THAT FOR WHAT COULD BE
CONTRIBUTING OR WHAT IS DRIVING
THIS AGGRESSION AND SELF-INJURY.
AND SO NOT IN ANY PARTICULAR
ORDER THERE ARE MANY FACTORS TO
LOOK AT INCLUDING ARE THERE
CO-OCCURRING PSYCHIATRIC
DISORDERS?
IS THE SYMPTOM, WHICH SOME
PEOPLE CALL BEHAVIOR, AGGRESSION
OR SELF-INJURY, WHAT'S THE
FUNCTION OF IT AND HOW IS IT
BEING REINFORCED IN THE
ENVIRONMENT OR IS IT
SELF-REINFORCING?
IS IT RELATED TO COMMUNICATION
CHALLENGES OR SIDE EFFECTS OF
MEDICATIONS OR OTHER THERAPIES?
HOW DOES IT RELATE TO SENSORY
SYSTEM.
A QUESTION NOT OFTEN ASKED BUT I
THINK COULD BE HELPFUL IS HOW
DOES IT RELATE TO A POTENTIAL
MISMATCH BETWEEN THE PERSON'S
ABILITIES AND DEMANDS BEING
PLACED ON THEM.
DEMANDS TOO HIGH OR TOO LOW.
CHANGES IN THE FAMILY OF COURSE,
MEDICAL ILLNESS OR PAIN WHICH WE
WORRY ABOUT A GREAT DEAL
PARTICULARLY WITH OUR
INDIVIDUALS WHO CANNOT COMMUN
KATE AS EASILY AND EMOTION
REGULATION AS DR. MAZEFSKY SAID.
IF I CAN GET OUR CLINICAL
TRAINEES TO THINK THIS WAY AND
THINK BROADER ABOUT WHAT CAN BE
VERY DRAMATIC PRESENTATION IN
FRONT OF YOU, I FEEL LIKE WE'RE
MAKING SOME HEADWAY.
WHAT DO WE DO ABOUT THIS?
MY TAKE IS WHAT OPTIONS ARE
AVAILABLE IN THE U.S. IN SYSTEMS
OF CARE.
FROM MOST INTENSIVE OR ACUTE TO
LEAST INTENSIVE IS THE PYRAMID.
AT THE TOP WE HAVE SPECIALIZED
PSYCHIATRIC HOSPITAL UNITS,
EXTREMELY FEW IN THE U.S. ABOUT
18.
ALL A DOUBLING SINCE WE LAST
LOOKED IN 2011 WHEN THERE WERE
ABOUT NINE.
I REFERENCED ABOUT 1600 GENERAL
IN-PATIENT PSYCHIATRY PATIENTS
IN THE U.S.
IT'S A SMALL NUMBER BUT THERE
ARE SOME.
IT'S A BASED ON OTHER FACTORS.
I'LL FOCUS ON THE IN-PATIENT
REALM I'LL FOCUS ON THAT A
LITTLE BIT.
THE FIRST POINT ABOUT THE TOP OF
THE PYRAMID THE MOST INTENSIVE
SETTING IS THOUGH THERE'S SO FEW
UNITS, KIDS WITH AUTISM HAVE
HIGH RATES OF PSYCHIATRIC
HOSPITALIZATION.
ONE STUDY BY DAVID MANDELL
SHOWED 11% OF KIDS BY THE AGE
THEY HIT 21 HAD BEEN
PSYCHIATRICALLY HOSPITALIZED AND
THAT'S HUGE BECAUSE THE
COROLLARY NUMBER WITH KIDS WITH
PRIVATE INSURANCE IS .11%.
THIS IS MUCH HIGHER AND ENERGY
WAY TO GET AT THAT IS LISA CROEN
FOUND A 6-1 RATIO OF HOSPITAL
FOR KIDS WITH AUTISM VERSUS NOT
AUTISM IN A FAIRLY LARGE SAMPLE
PSYCHIATRIC HOSPITALIZATION.
A POINT TO MAKE IS THIS GROUP OF
PEOPLE ARE BEING HOSPITALIZED
NOT NECESSARILY FOR THE SAME
REASONS THAT KIDS WHO DON'T HAVE
AUTISM ARE BEING HOSPITALIZED
WHO ARE OFTEN PRESENTING WITH
SUICIDALITY, SEVERE DEPRESSION
AND ANXIETY, ETCETERA.
THIS GROUP GENERALLY PRESENTS
WITH AGGRESSION, SELF-INJURY,
PROPERTY DESTRUCTION, ETCETERA.
THEY MAY ALSO PRESENT WITH
DEPRESSION OR SUICIDALITY,
ETCETERA AND THE STUDY WAS THE
CHIEF COMPLAINT TO THE DEGREE IT
COULD BE DETERMINED.
AND THAT'S WORTH NOTING BECAUSE
TYPICALLY PATIENTS IN
PSYCHIATRIC SETTINGS ARE NOT
DESIGNED FOR EXTERNALIZING
BEHAVIORS BUT INTERNALIZING
BEHAVIORS LIKE SUICIDALITY SO
YOU CAN'T USE A TYPICAL SET UP.
A QUICK LOOK WE TRIED TO SEE CAN
WE PRODUCE SOME EVIDENCE FOR
THESE SPECIALIZED IN-PATIENT
UNITS.
THIS WAS A STUDY OF KIDS WITH
AUTISM AND WE LOOKED AT 350 OF
THEM AND THIS IS A BUSY FIGURE
BUT IT ESSENTIALLY SHOWS THEY
COME IN VERY HIGH IN TERMS OF
GRESSION, SELF-INJURY AND
TANTRUMS AND LEAVE WITH A DROP
AND THERE'S SOME REGRESSION AT
TWO-MONTH FOLLOW-UP BUT NOT
SIGNIFICANT AMOUNT AND GETTING
ENDURING AFFECT AS OF THE YA
TRICK HOSPITALIZATION IN THE
SPECIALTY UNITS NOT IN YOUR
NORMAL CHILD AND ADOLESCENT UNIT
I MIGHT ACCESS.
THOSE OUTCOMES ARE UNKNOWN.
SO, THOSE UNITS CAN BE HELPFUL
AND I'VE FOCUSSED ON THEM BUT WE
ALSO DID SOME WORK RECOGNIZING
THAT THERE'LL NEVER BE ENOUGH OF
THOSE UNITS.
NOT EVEN CLOSE TO ENOUGH.
THERE'S 18 NOW AND THERE WERE
NINE A DECADE AGO.
IT'S NOT ONE PER STATE,
OBVIOUSLY.
HOW ELSE CAN WE IMPROVE CARE IN
PSYCHIATRIC HOSPITAL FOR THE
POPULATIONS?
WE DID A PROJECT WITH BELLEVUE
HOSPITAL IN MANHATTAN A PUBLIC
LOW-RESOURCE PSYCHIATRIC
HOSPITAL AND DEVELOPED A CARE
PATHWAY FOR YOUTH WITH AUTISM OR
INTELLECTUAL DISABILITY.
DOES SOME BASIC WHAT I WOULD
CALL A PRE-LOW INTERVENTION WITH
THE CARE PATHWAY AND GOT
DRAMATIC RESULTS WHERE THE
LENGTH OF STAY IN THE HOSPITAL
DECREASED SIGNIFICANTLY.
AND PERHAPS STRIKING THE USE OF
PHYSICAL HOLDS AND RESTRAINTS
WENT DOWN 80% PRE-INTERVENTION
VERSUS POST.
I THINK THAT SAYS THERE'S WAYS
TO IMPROVE AN NON-SPECIALIZED
SETTINGS POTENTIALLY.
SO AS MUCH AS I TOLD YOU ABOUT
TREATMENT THERE ARE BIG GAPS
WHICH EVERYONE HAS SPOKEN TO IN
VARIOUS WAYS TODAY SO JUST A
SUMMARY OF SOME OF THE COMMON
GAPS.
THERE'S UNEVEN GEOGRAPHIC
DISTRIBUTION.
THERE'S -- WE HAVE A SPECIALTY
UNIT IN PORTLAND, MAINE WITH A
POPULATION OF 250,000 AND NEW
YORK CITY DIDN'T HAVE A UNIT FOR
YOUTH WITH AUTISM OR DEVELOPMENT
DISABILITY, ZERO.
THEY HAVE PROVIDERS DOING THEIR
BEST BUT DON'T HAVE A SPECIALTY
UNIT AS AN EXAMPLE.
INTERMEDIATE LEVELS OF CARE FROM
MY VIEW ARE RARE LIKE INTENSIVE
OUT-PATIENT AND SPECIALIZED
CLI
CLINICS THAT CAN WORK ON THESE
CHALLENGES ARE QUITE RARE AND
MOST ARE SEEN IN PRIMARY CARE
NOR NOT AT ALL.
SOMETHING ELSE TO NOTE THERE'S
MANY RESIDENTIAL TREATMENT
CENTERS IN THE U.S. PEOPLE CALL
THEM DIFFERENT THINGS, GROUP
HOMES, PRTF, ETCETERA.
THERE'S PLACES WHERE PEOPLE LIVE
AND ARE SUPPOSED TO GET
TREATMENT AND VERY FEW WHO HAVE
SIGNIFICANT EXPERTISE FOR THIS
POPULATION AND THERE'S ALMOST NO
DATA ABOUT THEM.
AND WE ARE SPENDING VAST SUMS OF
MONEY ON RESIDENTIAL TREATMENTS.
I DON'T HAVE A PROBLEM WITH THAT
BUT A PROBLEM WITH NO IDEA ON
KNOWING THE OUTCOMES AND THAT'S
AN AREA THAT CAN USE MORE
ATTENTION.
FINALLY, MANY PLACES MIGHT HAVE
ONE PIECE OF THIS CONTINUUM OR
LEVELS OF CARE BUT VERY FEW HAVE
A CONTINUUM WITH MULTIPLE LEVELS
OF CARE WHICH IS WHAT YOU NEED
TO REALLY CARE FOR THE
POPULATION.
WE HAVE A LONG WAY TO GO.
BRIEFLY, AND THEN I'LL WRAP UP,
RESEARCH GAPS IN AGGRESSION AND
SELF-INJURY THERE'S MANY.
THIS IS MY TAKE ON THE PROMINENT
ONES.
REALLY WE STILL DON'T HAVE A
GOOD NATURAL HISTORIES STUDIES
ON IN OTHER WORDS I CAN'T SAY TO
A PARENT OF A 12-YEAR-OLD THIS
IS LIKELY TO GET BETTER AS THE
CHILD AGES OR WON'T OR GET
WORSE.
I DON'T HAVE A STUDY TO HELP
GIVE THAT KIND OF GUIDANCE FOR A
PARENT.
CERTAINLY THE ETIOLOGY NEEDS A
LOT OF WORK.
SO BECAUSE WE HAVE THE
BEHAVIORAL FUNCTIONAL APPROACH
AND A LOT OF WORK THERE BUT WE
REALLY NEED MORE NOVEL
APPROACHES TO AGGRESSION
SELF-INJURY AND LOOKING AT
BIOLOGICAL MECHANISM AND USING
OBJECTIVE MEASURES, PERHAPS
PHYSIOLOGY.
THERE'S BEEN EARLY WORK IN THAT
BUT IT IS EARLY AND I THINK IT'S
AN AREA THAT GOT ATTENTION 20,
30 YEARS AGO AND NOT MUCH HAS
HAPPENED AS THE PUBLICATION
CHART SHOWED AND THINK IT'S
RIGHT BUT WILL REQUIRE ATTENTION
AND FUNDING.
THERE'S A NEED FOR GOOD TOOLS TO
DIAGNOSE PSYCHIATRIC
CO-OCCURRING DISORDERS ACROSS
THE SPECTRUM.
THERE'S MORE WORK TO DO WITHIN
APPLIED BEHAVIOR ANALYSIS AND
FUNCTIONS OF BEHAVIOR AND
EMOTION REGULATION TO THINGS
THAT WE OBSERVE AND SEE.
ACCESS IS A HUGE ISSUE AND WHAT
ARE THE BARRIERS TO ACCESS.
IS IT CAPACITY OR OTHER THINGS
AND WHICH ARE MODIFIABLE.
WHAT CAN WE DO ABOUT THIS?
FURTHER RESEARCH GAPS IN
TREATMENT.
WITH HAVE SINGLE-CASE STUDIES
THATRY SCIENTIFICALLY VALID BUT
FRANKLY INSURERS, POLICY MAKERS,
PEOPLE WHO RUN HOSPITALS DON'T
UNDERSTAND THEM AND DON'T KNOW
WHAT TO MAKE OF THEM.
THEY NEED TO SEE GROUP
RANDOMIZED TRIALS OR GROUP
EFFECTIVENESS TRIALS.
THAT'S JUST THE WORLD WE LIVE
IN.
WE NEED CONTROL GROUP STUDIES OF
TREATMENT PACKAGES.
PERHAPS ADA PLUS FUNCTIONAL
COMMUNICATION TRAINING OR ADA
PLUS MEDS BUT PARENT TRAINING.
THAT'S WHAT HAPPENS IN THE REAL
WORLD IF YOU'RE LUCKY ENOUGH TO
ACCESS IT BUT WE DON'T HAVE
MUCH.
WE HAVE A FEW STUDIES THAT HAVE
BEEN FUNDED BY NIMHD ON MEDS BUT
PARENT TRAINING BUT NOT MUCH
BEYOND THAT.
AND PEOPLE WITH PROFOUND AUTISM
IN OUR STUDIES PARTICULARLY OF
TREATMENT.
THAT'S MY FINAL POINT.
WE HAVE UNFORTUNATELY PUBLISHED
THIS PAPER YEARS AGO WE HAVE
UNFORTUNATELY SEEN A DECREASING
INCLUSION OR PARTICIPATION OF
PEOPLE WITH I'LL USE THE TERM
AUTISM IN SPECIFICALLY TREATMENT
STUDIES.
I THINK IT MAY BE IN ALL STUDIES
BUT CERTAINLY IN TREATMENT
STUDIES AS AN EXAMPLE OF SHOWING
THAT THAT'S A FIGURE FROM THAT
PAPER WHERE YOU SEE THE AVERAGE
I.Q. AND COMMUNICATION ABILITY
AND EVEN ADAPTIVE FUNCTIONING
RISING OVER TIME WHEN WE LOOKED
AT 367 TREATMENT STUDIES AT VERY
SIGNIFICANT RISE IN THESE
THINGS.
THE PERCENTAGE OF STUDIES THAT
INCLUDE OR FOCUS ON PEOPLE WITH
PROFOUND AUTISM HAS BECOME
SMALLER AND SMALLER OVER TIME.
I WANT TO ENCOURAGE
COLLABORATORS AND THE GROUP IS
LARGER AS WELL AS OUR RESEARCH
TEAM WHO DID THE BULK OF THE
WORK.
THANK YOU.
IVANO VA I SEE YOUR HAND UP BUT
WE'RE HOLD OFF ON QUESTIONS
UNTIL ALL THE PANELISTS SPEAK.
OKAY.
>> THANK YOU FOR ALLOWING ME TO
PRESENT IN SUPPORTING AUTISTIC
INDIVIDUALS WITH TRAUMATIC
STRESS ACROSS THE LIFE SPAN AND
THERE'S EXPERIENCES OF ADVERSITY
WHICH CAN INVOLVE MANY DIFFERENT
THINGS BUT TODAY I'LL BE TALKING
ABOUT TRAUMATIC EVENTS.
THOSE THAT CAN LEAD TO
POSTTRAUMATIC SUPPRESS DISORDER
AND TRAUMATIC STRESS AND I'LL
ALSO TOUCH ON ADVERSE CHILDHOOD
EXPERIENCES MORE BROADLY THE
WIDER SET OF NEGATIVE
EXPERIENCES THAT CAN ALSO
INFLUENCE HEALTH.
LITTLE RESEARCH HAS EXAMINED
AUTISTIC PEOPLE OR SUPPORT
PEOPLE AFTER ADVERSITY.
I'LL SHARE OUR BASIC RESEARCH
TRYING TO BETTER UNDERSTAND THE
TYPES OF TRAUMATIC EXPERIENCES
AUTISTIC PEOPLE FACE OVER THE
LIFE SPAN TO AND DEVELOP
SUPPORTS FOR AUTISTIC PEOPLE IN
REDUCING TRAUMATIC STRESS AND
TOUCH ON THIS AREA.
IN TERMS OF THE FIRST AIM,
LOOKING AT THE TYPES OF
TRAUMATIC EXPERIENCES WE SEE THE
FIRST PAPER WAS THE SOUTH
CAROLINA ADAM DATA SET PUBLISHED
IN 2019 AND THIS WAS CONDUCTED
WITH COLLEAGUES AT THE MEDICAL
UNIVERSITY OF SOUTH CAROLINA.
WHAT WE WERE ABLE TO DO WAS LINK
THE INFORMATION FROM THE ADAM
DATA SET WITH DATA FROM THE
SOUTH CAROLINA DEPARTMENT OF
SOCIAL SERVICES IN TERMS OF
REPORTS OF ABUSE AND NEGLECT TO
THAT CENTER.
SO FOR A VERY QUICK OVERVIEW,
WHAT WE SEE HERE IS RELATIVE TO
THE NON-AUTISTIC COMPARISON
GROUP WE SEE A SIGNIFICANTLY
HIGHER RATE OF ANY REPORT OF
MALTREATMENT IN AUTISTIC YOUTH,
OVER 1 IN 5 REPORTED SOME
MALTREATMENT AND WE SEE AN EVEN
HIGHER AND SIGNIFICANTLY HIGHER
RATE FOR AUTISTIC YOUTH WITH
INTELLECTUAL DISABILITY.
ALMOST 1 IN 3 IN THE SAMPLE
HAVING SOME EXPERIENCE OF
REPORTED MALTREATMENT.
AND TRY TO INFORM PREVENTION
TECHNOLOGIES.
WE SEE THE ODDS RASHS.
HOW MUCH MORE LIKELY AUTISTIC
USE WITH AND WITHOUT
INTELLECTUAL ABILITY WERE TO
EXPERIENCE THE FORMS OF ABUSE
AND NEGLECT.
SO THERE ARE SOME DIFFERENCES
WHICH I THINK COULD HELP
PINPOINT AREAS OF SUPPORT FOR
CHILD PROTECTIVE SERVICES AND
RELATED OFFICES BUT SOME NUMBERS
ARE STRIKINGLY HIGH AS HIGH AS
OVER THREE TIMES MORE LIKELY TO
EXPERIENCE THE FORMS OF
MALTREATMENT.
BECAUSE WE KNOW REPORTS TO
SOCIAL SERVICES WILL NOT CAPTURE
EVERYONE WE LOOKED AT THIS IN
OTHER WAYS AND IN OTHER SAMPLES.
THIS WAS A SAMPLE WHERE WE USED
CAREGIVER REPORT.
CAREGIVERS REPORTING ON THE
ADVERSITY THEY'RE AUTISTIC
CHILDREN HAD EXPERIENCED
RELATIVE TO A NON-AUTISTIC
COMPARISON SAMPLE.
THIS ECHOES WHAT HAS BEEN SHARED
TODAY THAT IN ADDITION TO
EXPERIENCES OF ABUSE AND NEGLECT
OR MALTREATMENT, WE ALSO SEE
VERY HIGH AND SIGNIFICANTLY
HIGHER RATES OF ALL OF THE
BROADER FORMS OF ADVERSE
CHILDHOOD EXPERIENCES WE TALKED
ABOUT.
WE HAVE ALSO ASKED AUTISTIC
ADULTS ABOUT THEIR EXPERIENCES
WE SEE SIMILAR THAT TAUAUTISTIC
ADULTS REPORT A HIGHER NUMBER OF
INCIDENTS THAT THEY WITNESSED OR
LEARNED HAPPENED TO OTHER PEOPLE
IN THEIR LIFE AND REPORT HIGHER
LEVELS OF ALL TYPE OF PTSD
SYMPTOMS.
I'D LIKE TO ALSO ACKNOWLEDGE I
THINK THE DATA IS IMPORTANT TO
SHOW AND EMPHASIZE THE NEED FOR
TRAUMA-INFORMED SERVICES BUT I
THINK IT'S ALSO CONSISTENT WITH
WHAT MANY ADVOCATES HAVE BEEN
SAYING FOR A LONG TIME AND
CONSISTENT WITH THE GROWING BODY
OF RESEARCH AND IT'S TAKEN OFF
IN THE LAST FIVE YEARS WHERE
MANY RESEARCH GROUPS ARE FINDING
THIS.
WE SEE HIGH RATES OF TRAUMA AND
PTSD AND SEE HIGHER RATES OF
TRAUMATIC STRESS SYMPTOMS MORE
BROADLY AND BECAUSE TO DATE WE
KNOW THERE'S BARRIERS TO
ACCESSING MENTAL HEALTH CARE AND
THERE'S LITTLE RESEARCH DONE ON
TRAUMATIC FOCUSSED THERAPIES IN
PARTICULAR IT'S LIKELY UNTREATED
PTSD I THINK QUITE COMMON FOR
AUTISTIC PEOPLE AND CAN BE ONE
FACTOR CONTRIBUTING TO HEALTH
DISPARITIES ACROSS THE LIFE
SPAN.
WE FEEL EVALUATING INTERVENTIONS
IN THIS SPACE IS ONE REALLY
IMPORTANT PRIORITY TO ADDRESS
THIS PROBLEM.
SO TO SHARE OF WHAT WE HAVE DONE
IN THIS AREA I'LL WALK YOU
THROUGH HIGHLIGHTS OF THE
PROGRAM EVALUATION RESEARCH
WE'VE BEEN UNFORTUNATE TO START
RECENTLY.
THE FIRST OF THE SMALL PILOT
FEASIBILITY STUDY FUNDED THROUGH
THE ORGANIZATION FOR AUTISM
RESEARCH TO SEE WHETHER
TRAUMA-FOCUSSED COGNITIVE
BEHAVIORAL THERAPY OR TFCBT IS
GOOD FOR AUTISTIC YOUTH AND THAT
EVIDENCE BUT NOT AS MUCH DATA TO
SEE IF IT'S HELPFUL FOR AUTISTIC
YOUTH AND TESTED WITH FOR
CHILDREN BETWEEN 10 AND 17 AND
RAN THE PILOT STUDY OVER
TELEHEALTH.
WE GOT RESULT AND IN THE PILOT
SAMPLE OF 17 WE SEE SIGNIFICANT
PRE TO POST REDUCTIONS IN YOUTH
PTSD SYMPTOMS AND THIS IS BOTH
WHEN WE ASK PARENTS OR
CAREGIVERS TO REPORT ON CHILD
SYMPTOMS AND ALSO WHEN CHILDREN
REPORTED ON THEIR OWN SYMPTOMS.
AND THESE WERE MAINTAINED TO THE
SAME SIZE AND ONE MONTH POST
SUGGESTING PROMISE FOR REDUCING
PTSD AND WHAT WAS PROMISING WE
SAW IMPROVEMENTS IN THE BROADER
NET OF TRAUMATIC STRESS BROADLY
WE SAW REDUCTION IN YOUTH
DEPRESSION, ANXIETY.
WE SAW EMOTION REGULATION
CONSISTENT WITH THE OTHER WORK
WE'VE BEEN TALKING ABOUT AND
IMPROVEMENTS IN PARENTING AND
RESILIENCE OUTCOMES.
A LOT OF PROMISE TO THIS
INTERVENTION TO EVALUATE IN MORE
DETAIL MOVING FORWARD AND WE'RE
TRYING TO BETTER UNDERSTAND HOW
THIS PROGRAM WORKS SO WE CAN
OPTIMIZE IT MOVING FORWARD AND
ONE OF THE WAYS WE'RE DOING THAT
IS THROUGH THE FEEDBACK WE'VE
GOTTEN FROM CAREGIVERS AND YOUTH
THEMSELVES ABOUT THE PROGRAM I
WON'T GO THROUGH THIS IN DETAIL
BUT HERE A 5 WOULD HAVE BEEN THE
HIGHEST LEVEL OF SATISFACTION
RECORDING THIS PARTICULAR
DOMAIN.
OVER ALL, WE DON'T THINK THE
PROGRAM WILL BE FOR EVERYONE BUT
WE DID THINK IT WAS A PROMISING
FINDING SO FAR TO WARRANT THE
STUDY AND LARGER TRIALS OF THE
PROGRAM.
WE ALSO JUST RECEIVED PILOT FUND
FROM THE WYOMING PROGRAM THROUGH
NIGMS TO START A PILOT
FEASIBILITY EVALUATION OF A
NARRATIVE-BASED SUPPORT PROGRAM
FOR AUTISTIC ADULTS.
SO THIS WILL BE A SIMILAR
PRE-POST FEASIBILITY DESIGN AND
WE'RE INTERESTED WHETHER WE SEE
IMPROVEMENTS IN MENTAL HEALTH
AND PHYSICAL HEALTH OUTCOMES
WE'LL BE ASSESSING USING FITBIT
DEVICES.
WE'RE EXCITED TO GET STARTED ON
THIS NOW.
SO FINISHING BRIEFLY WITH SOME
OF OUR FUTURE DIRECTIONS IN THIS
AREA.
SO I'VE SPOKEN MOSTLY TODAY
ABOUT TRAM AT EXPERIENCES,
STRESSFUL EXPERIENCES AND WE'RE
DOING WORK TO BETTER UNDERSTAND
WHAT ARE THE POSITIVE CHILDHOOD
EXPERIENCES THAT AUTISTIC PEOPLE
AND FAMILIES VALUE AND PROMOTE
THOSE IN INTERVENTIONS.
WE'VE LOOKED AT HOW CAREGIVER
TRAUMA RELATES TO INDIVIDUAL
TRAUMA AND UNDERSTANDING
INTERGENERATIONAL STRESS OVER
TIME AND WE'RE COMMITTED TO
UNDERSTANDING AND WORKING WITHIN
THE SYSTEMS OF CARE IN WHICH
AUTISTIC PEOPLE SHOULD BE ABLE
TO ACCESS SERVICES.
IN ADULTS ONE THING WE SPENT
TIME ON IS HEALTH CARE SERVICES
AND PREGNANCY SERVICES IN
PARTICULAR.
SO WE'VE HEARD A LOT IN OUR WORK
ABOUT THE MEDICAL TRAUMA THAT
MANY AUTISTIC ADULTS CAN
EXPERIENCE AND THE NEED TO
BETTER UNDERSTAND THOSE
EXPERIENCES TO INCLUDE THEM AND
I'VE BEEN FORTUNATE TO PARTNER
WITH AN ADVOCATE TRYING TO
DEVELOP RESOURCES FOR AUTISTIC
PEOPLE ABOUT PREGNANCY RELATED
HEALTH CARE.
THAT'S ONE THING WE'RE SPENDING
TIME ON NOW.
WE'RE HOPING TO MOVE THE
RESEARCH AND TOPICS OUT TO
COMMUNITY SETTING WITH THE
AUTISTIC COMMUNITY.
I WILL STOP THERE BUT PLEASE
REACH OUT IF Y'ALL HAVE
QUESTIONS OR INTERESTS.
WE'RE LOOKING FORWARD TO
CONTINUING TO BETTER UNDERSTAND
THESE PROGRAMS TO MAKE SURE TO
DISSEMINATE THEM IN MEANINGFUL
WAYS MOVING FORWARD.
AND I'LL BRIEFLY ACKNOWLEDGE THE
FUNDERS AGAIN AND ORGANIZATION
FOR AUTISM RESEARCH AND WYOMING
PROGRAMS AND THE RESEARCH
NETWORK FUNDED THROUGH PCORI AND
WANT TO ACKNOWLEDGE THE GRADUATE
STUDENTS ON THE WORK EACH DOING
EXCITING WORK IN THIS AREA AS
WELL.
SO I THINK I'LL TURN IT OVER TO
DR. BECK.
>> HI, THANK YOU TO THE IACC
LEADERS FOR INVITING ME TO SPEAK
TODAY AND WHAT GREAT WORK MY
COLLEAGUES HAVE PRESENTED SO
FAR.
MY TALK WILL BE ABOUT
PERSPECTIVES FROM AUTISTIC
PEOPLE, PARENT AND CLINICIANS ON
MENTAL HEALTH INTERVENTIONS AND
AREAS OF NEED.
SO THE WORK I'M GOING TO TALK
ABOUT TODAY IS SOME STEPS TO
TAKE ALL THE GREAT WORK YOU
HEARD AND HOW DO WE TRANSLATE IT
TO THE COMMUNITY.
THE PURPOSE OF THIS STUDY THAT
WE CONDUCTED WAS TO UNDERSTAND
INTERVENTION NEEDS AND BARRIERS
FOR AUTISTIC PEOPLE AND
COMMUNITY HEALTH CARE.
SOME OF THE QUESTIONS WE WERE
INTERESTED IN ARE WHY ARE
AUTISTIC PEOPLE SEEKING MENTAL
HEALTH CARE.
WHAT CONTRIBUTE TO EMOTION
DYSREGULATION IN DAILY LIFE
SINCE IT RELATE TO MENTAL HEALTH
AND SUICIDALITY AND AGGRESSION
AND WHAT IS HELPFUL AND WHAT
BARRIERS PREVENT INTERVENTIONS
FROM BEING HELPFUL.
THIS WAS A QUALITATIVE STUDY
WHICH IS A USEFUL DESIGN TO HEAR
STORIES FROM ACROSS THE AUTISM
COMMUN
COMMUNITY.
WE CAN INFORM FUTURE RESEARCH
DESIGN AND TEST BROADER SAMPLE.
WE TALKED TO 55 INDIVIDUALS.
YOU'LL SEE HERE THERE WERE FOUR
DIFFERENT GROUPS.
WE TALKED TO AUTISTIC ADULTS
RANGE FROM 21 TO 68.
WE TALKED TO AUTISTIC TEENAGERS
AND TALKED TO CAREGIVERS AND
PATIENTS.
50% OF THAT GROUP HAD CHILDREN
THAT WERE NON-SPEAKING OR HAD
SEVERE SELF-INJURY AND
AGGRESSION.
AND WE TALKED TO 16 COMMUNITY
MENTAL HEALTH PROVIDERS.
SO IS THE FIRST THEME WAS WHAT
WERE THE REASONS FOR SEEKING
MENTAL HEALTH CARE.
THESE WERE THE TOP THREE ACROSS
THE GROUPS WAS EMOTION
DYSREGULATION WE HEARD ABOUT
TODAY MANY TIMES AND HOW IT RELS
TO OTHER BEHAVIORS AND EX TERM
BEHAVIORS AND SUICIDALITY.
ONE INTERESTING THING WE WEREN'T
EXPECTING GOING INTO THIS WAS
THERE WAS A LARGE FOCUS AMONG
THE INDIVIDUALS IN THE STUDY
TALKING ABOUT HOW SENSORY NEEDS
AND SENSITIVITIES CONTRIBUTES TO
EMOTION DYSREGULATION AND HOW
THE NEED FOR THAT IN MENTAL
HEALTH CARE AND SIMILAR TO THE
TALK WE JUST HEARD AS TRAUMA AND
CHRONIC INVALIDATION WAS A TOP
REASON FOR SEEKING COMMUNITY
CARE.
I'LL HIGHLIGHT QUOTES AND THIS
IS FROM A 21-YEAR-OLD AUTISTIC
MAN.
I WANT PEOPLE TO KNOW HOW
CRIPPLINGLY LONELY I AM.
ALL I'VE KNOWN IS GASLIGHTING,
LIES, HATRED, PHYSICAL AND
PSYCHOLOGICAL ABUSE SO I
UNFORTUNATELY DO NOT HAVE HIGH
SELF-ESTEEM OR SELF-CARE.
THIS IS FROM A COMMUNITY MENTAL
HEALTH THERAPIST.
THEY'RE HURT SO BAD BY PEOPLE.
IT'S LIKE TOUCHING A STOVE A
THOUSAND TYPES.
AT SOME POINT YOU QUIT TOUCHING
THE STOVE.
YOU DON'T WANT A STOVE BECAUSE
IT'S DANGEROUS.
AND WE ASKED FOLKS TO TELL US
STORIES.
WE ASKED THEM TO TELL A STORY OF
A RECENT TIME YOU FELT OUT OF
CONTROL WITH STRONG EMOTIONS AND
AND IN ADULT GROUP NEARLY EVERY
PARTICIPANT SHARED A STORY OF A
MELTDOWN OR EMOTION
DYSREGULATION THAT OCCURRED ON
THE WAY TO OR IN A HEALTH CARE
SETTING.
SOMEONE EARLIER MENTIONED
ACCESS.
ACCESSING HEALTH CARE WAS SO
STRESSFUL TO GET THERE AND
INTERACTING WITH THE DIFFERENT
WELL-MEANING HEALTH CARE
PROVIDERS WAS NOT A SMOOTH
PROCESS AND OFTEN RESULTED IN
PRETTY SIGNIFICANT TROUBLES.
THE TEENAGERS FREQUENTLY
EXPERIENCED DYSREGULATION IN
SCHOOL.
I'LL SAY A STRONG RUNNER UP TO
THESE SETTINGS WERE GROCERY
STORES.
GROCERY STORES AND TRAVELLING.
WE LOOKED AT WHAT CONTRIBUTED TO
EMOTION DYSREGULATION IN THE
STORIES?
AND WE FOUND THAT INACCESSIBLE
ENVIRONMENTS LIVING IN A
NEUROTYPICAL WORLD WAS ONE OF
THE STRONGEST PREDICTORS TO
EMOTION DYSREGULATION IN THE
STORIES.
AND A LOT OF THAT WAS SENSORY
AND UNPREDICTABILITY WHICH
CONTRIBUTED TO IT.
DISCRIMINATION WAS A PROMINENT
THEME WITH CONTRIBUTING TO
EMOTION DYSREGULATION AND NOT
FEELING SAFE AND CHRONICALLY
FEELING INVALIDATE AND MASKING
TRAITS OF SYMPTOMS WAS A STRONG
CONTRIBUTOR TO DYSREGULATION AND
HAVING DIFFICULTY KNOWING
EMOTIONAL DYSREGULATION WAS
COMING AND NOT REALIZING UNTIL I
WAS TOO LATE BECAUSE THEY WERE
HIDING IT.
AND SOCIAL MISUNDERSTANDING WITH
NEUROTYPICAL PEERS LEADING TO
SOCIAL REJEKSZ.
-- REJECTION.
THIS WAS ALSO THE STANDARD
PROMINENT IN THE INTERVIEWS
THOUGH WHAT'S HIGHLIGHTED ON THE
SLIDES WAS MORE COMMONLY
ENDORSED THE SENSORY NEEDS AND
AWARENESS AND SOCIAL REDUCTION.
SOME QUOTES.
I AM FORCED TO KEEP IT TONED
DOWN BECAUSE OKAY I'M AT WORK
CAN'T BE SEEN FORCING IT DOWN
ACTUALLY IS WORSE.
PEOPLE DON'T UNDERSTAND THINGS
FROM YOUR PERSPECTIVE.
YOU'RE EXPECTED TO UNDERSTAND
THINGS FROM THEIR PERSPECTIVE
BUT NO EFFORTS ON THE OTHER
PERSON'S PART.
LASTLY A QUOTE FROM A
17-YEAR-OLD TEENAGER TALKING
ABOUT A SOCIAL MISUNDERSTANDING
AT SCHOOL THAT IMPACTS THE
ENTIRE REST OF THEIR YEAR.
THERE WAS A BUG ON THE
PLAYGROUND AND EVERYONE WAS
GATHERED EIGHT AND HAD NO CLUE
AND I RAN OVER AND STEPPED ON
THE BUG AND FOR THE REST OF THE
YEAR I STAYED INSIDE.
THE CONSEQUENCES OF
DYSREGULATION AND STORIES FROM
PARTICIPANTS WERE QUITE SEVERE.
THERE ARE FREQUENT UNJUST
RESPONSES TO EMOTION
DYSREGULATION IN HEALTH CARE
SETTINGS AND SCHOOL SETTINGS AND
COMMUNITY SETTINGS.
UNV
IN VOLUNTARY SEDATION AND LOSS
OF JOBS AND FRIENDSHIPS AND THE
NEED FOR SAFE PLACES TO GO WHEN
EXPERIENCING DYSREGULATION WAS
PROMINENT.
HERE'S A QUOTE FROM A
42-YEAR-OLD AUTISTIC FEMALE.
THEY'RE THREATENING TO SUSPEND
ME IT MAKES NO SENSE BECAUSE I'M
NOT WELL ENOUGH.
SHE HAD A MELTDOWN.
ACROSS HEALTH CARE PROVIDERS WE
ASKED THEM WHAT APPROACH THEY'RE
USING AND THAT WAS A WIDE
APPROACH.
THEY DESCRIBED VALIDATION,
WORKING ON RELATIONSHIPS, SOCIAL
SKILLS, MINDFULNESS AND SENSORY
TOOLS.
WHY I THINK IT CAME UP SO OFTEN
IS WHEN I SEE FAMILIES I SEE
THEM FOR YEARS AND YEARS AND THE
NEED FOR LONG-TERM CARE.
AND THEN 25% MENTIONED
BEHAVIORAL APPROACHES.
THERE WERE INTERVENTIONS AND DO
THEY HONOR AUTISM IF SOMEONE IS
BE DISCRIMINATED AGAINST WHY DO
WE WANT TO FEEL WE'RE CHANGING
THE INDIVIDUAL?
THEY'RE NOT GENERALIZING TO REAL
LIFE.
WHAT CAME UP FOR THAT WAS
PROGRESS MADE IN A THERAPY
SESSION WASN'T WORKING WHEN THEY
GOT HOME OR WHEN THEY GOT TO
SCHOOL.
AND THEY WEREN'T DESIGNED FOR
COMMUNICATION AND I FEEL LIKE WE
HEARD THIS SENTIMENT A FEW TIMES
FROM THE PARENT OF AN AUTISTIC
ADULT AND ASKED ME WHAT'S GOOD
AND WHAT'S POSITIVE AND WHAT
WORKS?
LIKE I SAID, I CAN TELL YOU WHAT
DOESN'T.
RELINQUISH YOUR CHILD TO THE
COUNTRY AND THEY'LL FIND THEM
SOMEWHERE THAT'S A GOOD PROGRAM.
THEY TELL ME THEY ARE AND I SEE
THEM AND HAVE SEEN MONEY AND
LOTS OF MONEY AND MONEY FOR
AUTISM SERVICES AND LEVERS.
I SEE ALL THESE GREAT PLACES
HAVING ALL KINDS OF FUND RAISERS
AND MY SON HAS NOTHING.
THIS IS A THEME WHETHER
INTERVENTIONS ARE APPROPRIATE
AND A COMMENT ON POSITIVE
BEHAVIORAL THERAPY.
MY FEELINGS ARE VALID AND MANY
SICH WEIGHINGS CANNOT BE REDUCED
TO FAULTY THINKING PATTERNS AND
A PARENT FROM AN AUTISTIC
BEHAVIOR HE THINKS HE'S SEEING
PROVIDERS BECAUSE SOMETHING'S
WRONG WITH HIM AND A COMMUNITY
THERAPIST MENTIONING I WISH
THERE WERE MORE PROGRAMS THAT
WERE ABOUT HELPING YOU REGULATE
OR SOCIAL SKILLS AREN'T GOOD, WE
NEED TO GET YOU SOCIAL SKILLS.
I FEEL LIKE A LOT OF THOSE ARE
DEFICIT BASED.
THE DIFFICULTY TRANSLATING.
COMMUNITY HEALTH PROVIDERS SHARE
THEIR MAIN TOOL TO HELP
GENERALIZING PROGRESS IS
INVOLVING PARENTS AND CAREGIVERS
IN TREATMENTS.
WE ASKED GROUPS HOW DO YOU FEEL
ABOUT INVOLVING CAREGIVERS IN
MENTAL HEALTH TREATMENTS?
WE FOUND WIDE DISCREPANCY AND
THERE'S THE SUPPORT OF
CAREGIVERS TO GENERALIZE
PROGRESS.
TO VARYING DEGREES HOW MUCH OF A
SESSION THEY'D BE INVOLVED.
ONLY ONE TEENAGER SAID THEY'D
PREFER TO HAVE A PARENT OR
CAREGIVER INVOLVED.
40% OF ADULTS WORE OPEN TO IT
AND THE REST WERE NOT OPEN TO
IT.
AND PARENTS AND CAREGIVERS WERE
SPLIT DOWN THE MIDDLE.
THEY MENTIONED MORE NUANCED
BEING INVOLVED IN PARTS OF THE
SESSION AND ALSO GENERALIZING AT
HOME.
INTERVENTIONS ARE FOUR TO FIVE
SESSIONS LONG AND PEOPLE ARE
LOOKING FOR YEARS.
YOU CAN GO TO FAIRS AND THEY'LL
SAY WE WELCOME ANYONE ON THE
SPECTRUM AND YOU SAY THOSE WITH
BEHAVIORS AND THEY SAY NO.
THE CURRENT MENTAL HEALTH CARE
SYSTEM IS A POOR FIT FOR
AUTISTIC PEOPLE AND THERE'S
NEEDS
AND INTEGRATING SENSORY INTO
MENTAL HEALTH INTERVENTIONS AND
CARE.
HOW CAN WE DESIGN INTERVENTIONS
WHERE WE'RE THINKING ABOUT THE
COMMUNITY FIRST AND DEVELOPING
IT WITH COMMUNITY MENTAL HEALTH
PROVIDERS SO THEY TRANSLATE
BETTER TO WHAT'S GOING ON AND
HOW CAN WE THINK OF OTHER TOOLS
FOR GENERALIZE PROGRESS THAN
JUST INVOLVING PARENTS WHO ARE
NEURODIVERGENT.
WE LACK MENTORS AND SUPPORT.
>> THANK YOU TO THE PANELIST.
I'LL ABBREVIATE THE COMMENT
PORTION AND PLEASE KEEP IT BRIEF
OUT OF RESPECT FOR OTHERS.
I KNOW WE'RE RUNNING BEHIND.
IVA
IVANO VO GO FIRST.
>> IS THERE RESEARCH ON LACK OF
AUTONOMY CAN CONTRIBUTE TO
CONTRIBUTING BEHAVIORS AND ALLOW
PEOPLE WHO NEED HIGH SUPPORT
MORE AUTONOMY IN THEIR LIVES AND
DOES THAT HELP RELIEVE THAT
CHALLENGE.
THANK YOU.
>> THAT'S AN EXCELLENT QUESTION
AND POWERFUL WAY TO LOOK AT
THINGS.
I DON'T HAVE THE ANSWER TO THAT.
IN OTHER WORDS, I'M NOT FAR
FAMILIAR WHETHER THERE IS OR IS
NOT RESEARCH FROM THAT
PERSPECTIVE PARTICULARLY LOOKING
AT AUTONOMY AND HOW THAT
INTERPLAYS WITH THESE BEHAVIORS
AND WHETHER THESE IMMIGRATION
AND SELF-INJURY AND WHETHER IT'S
A PATH TO REDUCE THEM OR
PREDICTOR OF THEM OCCURRING.
IT'S A REALLY GOOD QUESTION.
>> WE HAVE
DENA AND A COUPLE OTHERS AND I
WON'T HAVE TIME FOR OTHERS THIS
AFTERNOON AND PLEASE BE BRIEF AS
IVANOVA DEMONSTRATE.
>> YOU CAN KEEP UP I'LL ASK MY
QUESTIONS IN A ROW.
>> OUT OF FOR OTHERS JUST ASK
ONE QUESTION.
>> OH, GOD, YOU'LL MAKE ME DO
THAT?
OKAY JUST AN OBSERVATION.
I SAW MANY OPPORTUNITIES THERE
TO DELINEATE BY GENDER OR GEND
STATUS AND MANY SUBJECT MATTERS
CAN CONTINUE TO DELINEATE THAT
INFORMATION WHEN IT'S AVAILABLE
I THINK WOULD HELP INFORM OUR
RESEARCH TREMENDOUSLY GOING
FORWARD AND FOR RUSSELL LAYMAN
IF YOU WANT TO WATCH A LIVED
EXPERIENCE REPORTING WITH THE
RQS AND HIS YOUTUBE VIDEOS
DESCRIBE LOSING IN THE MENTAL
HEALTH ENVIRONMENT AND WATCHING
HIM BE DISREGARDED.
IT'S HEART WRENCHING.
I ENCOURAGE TO FIND IT.
>> THANK YOU.
I APPRECIATE YOUR FORBEARANCE
WITH MY STRICTNESS HERE.
>> HELEN.
>> THANK YOU SO MUCH.
THIS HAS BEEN REALLY FANTASTIC.
I WANT TWO INTERRELATED
QUESTIONS.
ONE IS HOW WE DEVELOPED ANY NEW
EFFECTIVE TREATMENTS FOR
REGRESSION AND PARTICULARLY FOR
THOSE WITH AUTISM AND SECOND, I
THOUGHT THESE WERE CONDITIONS
THAT WOULD BE LOW HANGING FRUIT
FOR PARTICULARLY ANIMAL MODELS
FOR AUTISM AND WE KNOW SO MUCH
MONEY IS GOING TO BIOLOGICAL
RESEARCH BUT WHAT PROPORTION IS
ACTUALLY THESE DAYS FOCUSSED ON
THESE CRITICAL CONDITIONS AND
THESE ARE INTERRELATED BECAUSE
WITHOUT ANIMAL MODELS WE'RE NOT
GOING GET TO NEW EFFECTIVE
BIOLOGICAL TREATMENTS THAT ARE
WHAT WE DESPERATELY NEED.
>> THANK YOU.
DO ANY PANELISTS CARE TO RESPOND
TO THE QUESTIONS?
>> I CAN TAKE THE FIRST ONE.
A LITTLE BIT.
SO SIMPLISTICALLY I WOULD SAY NO
WE HAVE NOT SEEN IN THE LAST 20
YEARS OR SO SINCE THE TRIALS FOR
ATYPICAL ANTIPSYCHOTICS IN 2002
AND 2003 WERE PUBLISHED FOR
AGGRESSION AND SELF-INJURY, I
DON'T THINK WE'VE SEEN
SIGNIFICANT ADVANCES.
WE'VE SEEN MARGINAL ONES.
WE HAVE PROMISING THINGS SUCH AS
EMOTION REGULATION AND
INTERVENTION, THE EASE
INTERVENTION PARTICULARLY EASE
I.D. FOR THOSE WHO ARE HIGHER
SUPPORT NEEDS.
WE'RE LOOKING TO INTEGRATE THAT
INTO OUR IN-PATIENT UNIT BUT IN
TERMS OF SIGNIFICANT STEPS IT'S
NOT A RICH LANDSCAPE AND DON'T
MEAN TO SOUND NEGATIVE BUT
THAT'S THE CASE.
WHAT I'M DOING TODAY WITH MY
COLLEAGUES IT'S BETTER BUT NOT
MUCH DIFFERENT THAN 15 YEARS AGO
WHEN I STARTED DOING THIS.
>> I DONT HAVE MUCH TO ADD OTHER
THAN I AGREE FULLY AND DID TRY
TO EMPHASIZE THAT A LITTLE IN
THE INTRO.
I DON'T THINK WE MADE MUCH
PROGRESS IN THE AREA AND NEED TO
DO A BETTER JOB THINKING
HOLISTICALLY USING NEW
BIOLOGICAL RESEARCH NOT JUST
AN
ANTI-PSYCHOTICS.
>> NIMHD AFTER SEVERAL YEARS AGO
WE HAD A SESSION DEVOTED
SPECIFICALLY TO AGGRESSION AND
VIOLENCE AND HAVE A LOT OF
TESTIMONY FROM PARENTS AND
INDIVIDUALS LIVING WITH IT PUT
OUT AN UPDATED NOTICE ON
AGGRESSION RESEARCH WITH THIS
PARTICULARLY IN MIND AND THE
IDEA IT WOULD BE COMPELLING TO
TRY TO STUDY IT FROM THE
PRE-CLINICAL STANDPOINT.
NOTHING NEW COMING OUT OF THAT
YET BUT WE HOPE TO SEE SOMETHING
IN THE FUTURE.
WE HAVE YETTA AND HARI AND
SORRY, SCOTT WE WON'T BE ABLE TO
TAKE YOUR QUESTION SO MAYBE HOLD
IT TO THE END OF THE DAY.
YETTA.
>> THANK YOU FOR PRESENT.
QUICKLY, YOU DON'T HAVE TO GIVE
THE INFORMATION NOW BUT CURIOUS
TO KNOW WHO ALL PARTICIPATED IN
YOUR DIFFERENT STUDIES BIP
DIDN'T SEE THAT CLEARLY LAID OUT
ACROSS THE PRESENTATION.
AND THEN AS YOU TALK ABOUT
TAKING THE PLANS TO THE
COMMUNITY, HOW DO YOU THEN PLAN
TO ENGAGE A DIVERSE POPULATION
IN THAT NETWORK?
>> WE HAVE METHODS AND DETAILS
AND HAPPY TO SHARE MORE ABOUT
OUR SAMPLES.
WE'RE TRYING HARD TO GET DIVERSE
SAMPLES AND I THINK IT'S AN AREA
OF GROWTH WE'RE TRYING TO BUILD
COMMUNITY PARTNERSHIPS AND
TARGET MORE DIVERSE SAMPLE AND
MORE RECRUITING IN AREAS THAT
WILL FOSTER DIVERSITY.
>> I THINK SO WE HAVE AUTISM
CENTER OF EXCELLENCE FOCUSSED ON
DISSEMINATION AND IMPLEMENTING
IN THE COMMUNITY AND OUR
APPROACH IS TRULY FORMING
RELATIONSHIPS WITH COMMUNITIES
THAT MAYBE NECESSARILY DON'T
TRUST RESEARCH TO START.
SO WE'RE PARTNERING WITH LEADERS
IN THE COMMUNITY IN AUTISM AND
NOT IN AUTISM TO REACH THOSE
MARGINALIZED GROUPS BUT IT'S A
HUGE FOCUS.
>> THANK YOU.
I BELIEVE WE HAVE A QUESTION
FROM HARI.
>> WE HAVE TWO FROM HARI.
THE FIRST IS FROM DR. MAZEFSKY'S
TALK THE CDC STATES NOT ONLY
SERVING HIGH-FUNCTIONING
AUTISTICS BUT THE REST OF THE
AUTISM SPECTRUM DOES NOT HAVE
MENTAL HEALTH ISSUES AND DOESN'T
SEEM FAIR THE ONLY OPTION FOR
THE REST OF THE SPECTRUM IS
HEAVY USE OF PSYCHO TROPIC
MEDICATION.
WHAT IS TROUBLING IS IS WHAT I
HEARD FROM A CONVERSATION IN
STANFORD A FEW YEARS BACK THAT
SUCH MEDS FOR BEHAVIORS DON'T
WORK IN THE SAME WAY IN
AUTISTICS AS THEY DO IN THE
GENERAL POPULATION.
YET HE SAID MEDS ARE THE FIRST
COURSE OF ACTION AND COME WITH
MEMORY LOSS AND INCREASING MOTOR
ISSUES.
FOR THE GENERAL POPULATION THEY
HAVE CBT FOR KIDS.
WHY CAN'T THEY BE ADAPTED FOR
AUTISTICS?
WE ALSO NEED BETTER
PHARMACOLOGIC INTERACTIONS.
REGARDING DR. SIEGEL'S TALK I
AGREE AGGRESSION IS THE BIGGEST
BLOCK TO INCLUSION MORE THAN OCD
OR SELF-INJURY.
BOTTOM LINE BECAUSE NO FAMILY
WILL WANT THEIR NEUROTYPICAL KID
AROUND AN AUTISTIC KID WHO HAS
EVEN A SMALL CANS OF BEING
AGGRESSIVE, NO TEACHER WILL WANT
THAT PERSON IN THEIR CLASSROOM
OR SUPPORT STAFF TO WORK WITH
AGGRESSIVE AUTISTICS.
IT BECOMES A DOWNWARD SPIRAL FOR
THE AUTISTIC PERSON ON MANY
FRONTS.
AND HOSPITALIZATION CAN'T BE THE
ONLY SOLUTION AND BASICALLY NO
ONE WANTS TO BE AROUND THAT
PERSON AND EVEN THE FAMILY NOT
ABLE TO MANAGE THEM AT SOME
POINT DUE TO SHEER LACK OF
SUPPORT AND BURNOUT SO THE
AUTISTIC PERSON IS SENT AWAY.
ALL THIS COMPOUNDS ADVERSE
CHILDHOOD EXPERIENCES AND LIFE
LONG TRAUMA AND NEGLECT.
HE SAYS OFTEN THE ALTERNATIVE TO
AGGRESSION TOWARDS OTHERS
BECOMES SIB TO THEMSELVES DUE TO
TRAUMA AND GRESSION AND NEITHER
ARE GOOD OPTION.
>> THANK YOU.
WOULD ANYONE LIKE TO RESPOND?
THANK YOU VERY MUCH.
I'D LIKE TO THANK THE PANEL IT'S
STIMULATING TOE SEE THE RESULTS
AND WOULD LOVE TO SEA THAT
IMPLEMENTED.
WE'RE GOING TO GO TAKE A FIVE
MINUTE BREAK AND COME BACK AT
3:07 PRECISELY.
WELCOME BACK TO THE BRIEF
BREAK AND WE'LL HEAR COMMUNITY
PERSPECTIVES ON MENTAL HEALTH
NEEDS AND AUTISM.
I'LL INTRODUCE OUR SPEAKERS
DR. XENIA BOAR YOU FOR THE
AUTISM FOR EXCELLENCE AND LISA
MORGAN THE FOUNDER AND CO-CHAIR
OF AUTISM AND SUICIDE PREVENTION
WORK GROUP, CAYLA -- KAYLA
RODRIGUEZ OF AWN AND IAN
NEUMAIER A STUDENT AT UNIVERSITY
OF PITTSBURGH.
DR. MORENIKE ONAIWU AND A
HUMANITY SCHOLAR FOR WOMEN,
GENDER AND SEXUALITY AT RICE
UNIVERSITY.
WE ALSO HAVE JOINING US TODAY
ANGIE THE MOTHER OF A YOUNG
ADULT SON WHO REQUESTED TO KEEP
THE LAST I'M NAME OUT FOR
PRIVACY BUT WANTS TO SHARE.
WHETHER YOU'RE A COMMUNITY
PROFESSIONAL OR IDENTIFY MORE
THAN ONE OF THE CATEGORIES.
AND WHAT CHALLENGES HAVE YOU
FACED.
STARTING WITH DR. BORUE.
I STARTED OUT DOING RESEARCH
DURING TRAINING AS A MEDICAL
SCIENTIST.
I'VE DEDICATED MY CLINICAL
PRACTICE TO SERVING AUTISTIC
INDIVIDUALS AND I ALSO MYSELF AM
A LATE-DIAGNOSED AUTISTIC ADULT.
MATER
IN TERMS OF THE CHALLENGES SOME
HAVE BEEN ALREADY ECHOED IN THE
PRESENTATIONS TODAY.
PROBABLY THE BIGGEST ONE
CLINICALLY AS WELL AS
EXPERIENCED PERSONALLY IS THE
LACK OF TRAINING MOST MENTAL
HEALTH PROVIDERS HAVE WITH
AUTISM.
BECAUSE OF THAT LACK OF TRAINING
THERE IS SO MANY
MISUNDERSTANDING AND
MISDIAGNOSIS AND BY THE TIME
THEY GET TO MY PRACTICE THEY
HAVE DOZENS OF PROVIDERS THAT
MISSED THEM BEING ON THE
SPECTRUM, MISDIAGNOSED IT AS
SOMETHING ELSE OR SIMPLY NOT
KNOWING HOW TO ACTUALLY PROVIDE
MEANINGFUL HELP FOR THEM.
SO I THINK TRAINING INDIVIDUALS
AND TRAINING PROVIDERS TO
UNDERSTAND WHAT AUTISM IS AND
ISN'T IS A CRUCIAL PIECE OF THE
PUZZLE.
>> THANK YOU.
NEXT LISA MORGAN IN THE ROOM
WITH US.
I WANT TO THANK KELLY AND KAYLA
FOR SUPPORTING ME.
I'M AN AUTISTIC ADULT DIAGNOSED
AT 48 YEARS LATER IN LIFE AND I
EXPERIENCED SUICIDE, LOSS AND
LIVE WITH PTSD AND ANXIETY AND
DURING THE 30th YEAR OF OUR
MARRIAGE MY HUSBAND DIED BY
SUICIDE.
THE CHALLENGES HAVE ALL BEEN
SAID TODAY SO THAT'S REALLY
COMFORTING.
WE'RE MISUNDERSTOOD MARGINALIZED
POPULATION OF PEOPLE WHO
EXPERIENCE BELONGING IN A
SOCIETY BECAUSE WE'RE DITCH AND
I CONTINUALLY EXPERIENCE
INVALIDATION, STIGMA AND
MISCONNECTIONS AS AN AUTISTIC
INDIVIDUALS AND EVEN IN MY
PROGRAM BY PREVENTIONS.
WE'RE DYING BY SUICIDE SEVEN
TIMES HIRE -- HIGHER THAN THE
REGULAR POPULATION AND THE
SUPPORT AND INTERVENTIONS WE
RECEIVED ARE NOT DESIGN FOR US.
THEY'RE DESIGN BY NON-AUTISTIC
PEOPLE AND EXPECTED TO HELP US
AND I'LL SHOW COMMON BELOVED
ANIMALS TO SHOW WHAT I MEAN.
IT WOULD BE LIKE WITH A CAT
USING INTERVENTIONS BEST FOR
DOGS BUT THE CAT IS NOT A DOG.
IT'S NOT A WEIRD QUIRKY KIND OF
DOG.
IT'S A CAT.
A DIFFERENT ANIMAL WHO
UNDERSTANDS AND EXPERIENCE THE
WORLD IN A DIFFERENT WAY AND
THEY HAVE DIFFERENT SUPPORT
NEEDS.
AND AUTISTIC PERSON IS NOT A
DIFFERENT WEIRD NON AUTISTIC
PERSON AND WE'RE DITFFERENT
PEOPLE AND THE CHALLENGES THAT
FACE AUTISTIC PEOPLE AND
AVAILABILITY DOES NOT MEAN
ACCESSIBILITY.
THAT MEANS THERE'S A NATIONAL
CRISIS LINE 9-8-8 AVAILABLE BUT
NOT ACCESSIBLE AND UNINTENTIONAL
HARM IS ROOTED IN STIGMA AND PRE
CONCEIVED NOTIONS REFLECTED BACK
ON AUTISTIC PEOPLE THE WAY
PROFESSIONALS BEHAVE TOWARDS US.
LIVING WITH SUICIDAL IDEATION
MYSELF THAT HITS STRONG AT
TIMES, I REACHED OUT AND TEXTED
9-8-8 IN AUGUST THIS YEAR.
THE CALL ENDED WITH ME BEING
ACCUSED OF CAUSING CONFLICT
BECAUSE I TEXTED TO CLARIFY A
QUESTION ABOUT SOMETHING I
DIDN'T UNDERSTAND AND THEN HUNG
UP ON.
>> THANK YOU FOR SHARING THAT
POWERFUL TESTIMONY.
NEXT WE'LL HEAR FROM KAYLA
RODRIGUEZ.
HI, EVERYONE.
I'M GLAD TO BE HERE.
FIRST OF ALL I DESCRIBE MYSELF
AS AN LESBIAN AUTISTIC
INDIVIDUAL AND LIGHT-SKINNED
PUERTO RICAN WOMAN WITH A HEAD
BAND AND SHIRT WITH FLOWERS ON
AND IN MY ROOM, BASICALLY.
IN TERMS OF MENTAL HEALTH, I
HAVE SEVERAL MENTAL ILLNESSES,
OCD, DEPRESSION, ANXIETY,
BINGING DISORDER AND ALSO HAVE
CHRONIC ILLNESS AND TYPE 1
DIABETES AND OTHER STUFF SO IT
ALL AFFECTS MY MENTAL HEALTH.
BASICALLY I PREFER IDENTIFY
FIRST LANGUAGE BECAUSE AUTISM IS
A PART OF WHO I AM AND PART OF A
SUICIDE STUDY TO CREATE A
PROGRAM FOR AUTISTIC PEOPLE AND
ALSO PART OF AN AUTISTIC LGBTQ
STUDY AT UCLA.
THE CHALLENGES I SEE WITH MENTAL
HEALTH AND IT'S NOT A DISEASE
PEOPLE OUTGROW AND THE MEDIA
SHOWS PEOPLE WITH AUTISM PAINFUL
AND TA MAKES IT WORSE.
MOST THE PROBLEMS IS BECAUSE OF
THE ABLIST SOCIETY.
I DON'T SUPPORT ANY ORGANIZATION
THAT SUPPORTS ADA AND TRY TO
CURE, PREVENT OR TRY TO TREAT
AUTISM BECAUSE ALL THESE ARE
HARMFUL TO THE COMMUNITY.
AS A MATTER OF FACT THEY NEED TO
SUPPORT THEM THROUGH THEIR LIVES
AND THE MENTAL HEALTH
PROFESSIONALS I'VE EXPERIENCE I
WENT THROUGH A TERRIBLE
THERAPIST WHO WAS HOMOPHOBIC TO
ME AND WENT THROUGH TERRIBLE
PSYCHIATRY BASICALLY LAYING ON
HER KNEES TELLING MY MOM I'M NOT
A MIRACLE WORKER.
I'VE BEEN SUICIDAL SINCE I WAS
11.
THAT'S WHEN I WROTE MY FIRST
SUICIDE NOTE AND I'VE BEEN
STRUGGLING SINCE THEN AND I
STRUGGLE OFF AN ON AND CHANGES
IN MY LIFE MADE MY MENTAL HEALTH
AND NOT HAVING HAVING A JOB
MAKES IT WORSE BECAUSE I DON'T
HAVE MONEY BUT IT CAN HAVE
TROUBLE HAVING A JOB AND MY
SUICIDAL IDEATION IS CREEPING.
AGAIN BUT I WAS DOING BETTER FOR
A WHILE.
THANK YOU.
>> IAN.
>> I WAS DIAGNOSED IN ADULTHOOD.
I SOUGHT OUT MY DIAGNOSIS UNDER
MY OWN VOLITION AFTER ALIVE TIME
SPENT AVOIDING IT.
I CAME TO MY DIAGNOSIS AS IT
SELF BEING SORT OF A PRIVILEGE.
THE CONTEXT BY WHICH I CAME TO
BE DIAGNOSED IS WHAT ALLOWED ME
TO IDENTIFY THE DIAGNOSIS AS
EXTENDING A PRIVILEGE.
THE HIERARCHY OF NEEDS WERE
SOLID.
I HAD COME IN CONTACT WITH THE
DISABILITY JUSTICE COMMUNITY AND
SITUATED MYSELF IN RELATION TO
OTHER THANE WAY AND BEING ABLE
TO ENTACT WITH CLINICAL MENTAL
HEALTH PROFESSIONALS I WAS ABLE
TO TAKE THOSE MESSAGES AND APPLY
THEM TO A WIND FALL OF
OPPORTUNITIES AND RESOURCES AND
DID OCCUR EARLIER IN LIFE WHEN I
HAD BEEN COMPELLED TO INTERACT
WITH MENTAL HEALTH PROFESSIONALS
WHO OFFERED THEIR OWN DIAGNOSES
OF DIFFERENT THINGS AND WEREN'T
ABLE TO TAKE INTO ACCOUNT MY
HISTORY.
I THINK WHAT DR. BORUE SAID IS
VITALLY IMPORTANT.
THERE NEEDS TO BE TRAINING AND
RECOGNITION AND IF IT'S NOT
POSSIBLE FOR ONE LEVEL OF
THERAPIST TO PROBABLE DIAGNOSE
THEM THAN MAYBE THE MOLT OF A
SINGLE PRACTITIONER STENT RIGHT
ONE.
IT'S NOT AS TO FIX BUT WE OUGHT
NOT SHOESTRING OURSELF AND HOW
CAN WE FIX IT?
MAYBE IT'S SET UP INCORRECTLY
FROM THE JUMP.
I DON'T KNOW.
IN TERMS OF MY EXPERIENCES WITH
MENTAL HEALTH IN AUTISM I THINK
THE RELATIONSHIP OF THE TWO ARE
COMPOUNDING.
ONE AMPLIFIES THE AFFECTS OF THE
OTHER PARTICULARLY WITH
BACKGROUND RELATING TO SEVERAL
TYPE OF TRAUMA.
THE SALIENCE AND THE ANTECEDANTS
PLAY IN AND HOW THAT FIT INTO
BEING AN AUTISTIC PERSON.
THERE'S A CONSTANT FEED BABACK P
IS CHALLENGING.
WHEN I SEE THERE ARE MENTAL
HEALTH INITIATIVES AWARENESS
INITIATIVES AND THEY'RE USING A
SPOKESPERSON ONLY WILL TO SPEAK
OF ANOTHER PERSON'S MENTAL
ILLNESS AND ASSAYING I MANAGE IT
IN X, Y, Z WAY I THINK IS A
PROBLEM.
AND THAT OTHER ISSUES FROM THE
PEOPLE PUT ON A PLATFORM AND
TOLD PEOPLE TO INCREASE THEIR
AWARENESS OF IT WHICH IS
DOWNRIGHT DANGEROUS.
I'LL FINISH WITH THAT.
THANKS FOR HAVING ME.
>> THANK YOU.
>> MORENIKE.
>> YES, IT'S QUITE INTERESTING
BECAUSE WE WERE TALKING ABOUT
MENTAL HEALTH AND I COULD FEEL
MY MENTAL HEALTH TAKE A BIT OF A
DIVE WHEN YOU MENTIONED WE WERE
GOING TO HAVE TO CHANGE UP THE
WAY WE PLANNED THE PANEL AND
THAT'S BECAUSE I HAVE NEARLY A
PAGE OF JUSTIFICATIONS AS TO WHY
I AM ON THE PANEL BECAUSE I'VE
MET A LOT OF AUTISTIC PEOPLE AND
PEOPLE OF COLOR AND SUFFER FROM
IMPOSTER SYNDROME AND TRYING TO
PREACTIVELY LITIGATE WHY I
SHOULDN'T BE ON THE PANEL.
I'M MILDLY AUTISTIC OR HIGH
FUNCTIONING TO HAVE ANY REAL
UNDERSTANDING OF MENTAL HEALTH
ISSUES, ETCETERA.
BECAUSE I CANNOT DO THAT, I WILL
SAY I'M SOMEONE RATHER THAN MY
BIO IS ON THE IACC PAGE AND I
WANT TO SAY I'M A PERSON WHO
LIKE A LOT OF PEOPLE HAVE A LOT
OF LAYERS.
MY LIFE HAS ALWAYS BEEN AND A
SEA OF CONTRADICTIONS.
I HAVE COLLABORATED WITH GLOBAL
THOUGHT LEADERS AND SPOKEN AS AN
INVITED EXPERT AT THE UNITED
NATIONS AS SOMEONE WHO FLED FROM
A HOME IN PAJAMAS AND I'VE GONE
TO BED HUNGRY BECAUSE I DIDN'T
HAVE MONEY FOR FOOD OR PLACE TO
LIVE AND SOBBED UNCONTROLLABLY
BECAUSE MY CHILD WAS IN A
HOSPITAL AND SHARE WHAT HAPPENED
AND WHAT WAS WRONG AND I WAS
BEING MANIPULATED OR SORRY,
PATRONIZED BY THE PEOPLE THERE.
I THINK FOR ME AND A LOT OF MY
PEERS I HAVE A RANGE OF VARIOUS
DIAGNOSES, SOME
NEURODEVELOPMENT, SOME
AUTOIMMUNE AND SOME PSYCHIATRIC.
THERE'S A LOT OF THINGS GOING ON
MULTIPLE TYPES OF TRAUMA.
I SEE THAT IMPACTING WHO WE ARE
A
AND WHEN I WAS 11 YEARS OLD YOU
AND I WAS EXTREMELY SUICIDAL.
I HAD A SUICIDAL THOUGHT FROM 11
AND 12 AND THINGS I'VE STRUGGLED
THROUGHOUT MY LIFE BEING QUOTE,
UNQUOTE, SUCCESSFUL AND GIFTED
AND THAT DOESN'T INCLUDE ANY
SEXUAL ABUSE ONE MIGHT HAVE
ENCOUNTER AND DOESN'T ERASE THE
SENSITIVITY AND THERE'S SOME
DEMENTIA.
I HAVE THAT AND AUTOIMMUNE
DISEASE, RHEUMATOID ARTHRITIS
AND A PARENT.
YOU HAVE TO MANAGE THIS AND DO
ALL THE THINGS AND STILL BE
THERE FOR THE ONES WHO DEPEND
UPON YOU WHO NEED YOU, WHO LOVE
YOU AND WHO WHOM HAVE THEIR OWN
CHALLENGES IN A WAY WHERE IT'S
AUTISM OR NOT IN A WORLD WHERE
THINGS ARE OCCURRING AND
MICROGRESSIONS CAN CAN YOU TEASE
OUT AND HAVE AN UNDERSTANDING
AND DEALING WITH THE BASE LEVEL
OF STRUGGLE.
AND THE PROPER PRACTICES AND
LOOK AT MENTAL INTEGRATED CARE
TO ADDRESS THEM AND HAVE
SPECIALISTS TO UNDERSTAND WHAT'S
HAP ZEPENING AND IF THERE'S
CONCERNS AS A CAREGIVER AND
PEOPLE RELYING AND EXTERNAL
FACTORS TO DETERMINE IF YOU'RE
OKAY OR NOT AND IN A WAY THAT IS
TYPICAL YOU ESSENTIALLY HAVE THE
INGREDIENTS FOR A PERFECT STORM.
>> ANGIE.
>> I'M THE MOM OF A YOUNG ADULT
SON WITH AN AUTISM DIAGNOSIS.
I THINK IT MAY BE HELPFUL TO
BRIEFLY EXPLAIN MY SON HAS
MODERATE INTELLECTUAL
DISABILITY.
HE NEEDS SIGNIFICANT SUPPORT FOR
COMMUNICATION AND HAS A HISTORY
OF AGGRESSION, DESTRUCTION AND
SELF-INJURY AND I WON'T BE USING
HIS NAME.
WHEN I THINK OF MENTAL HEALTH
SPECIFIC TO THE AUTISM COMMUNITY
I WOULD SAY IT'S IMPORTANT FOR
THINGS LIKE SAFETY AND INCLUSION
AND WITH THAT IN MIND LET ME
EXPLAIN SOME CHALLENGES THAT WE
FACE FINDING SERVICES
PARTICULARLY WITH RESPECT TO
SUPPORTING HIS AGGRESSION.
IN SCHOOL, WE MET SOME WONDERFUL
PEOPLE ALONG THE WAY BUT WE'VE
ALSO ENCOUNTERED SITUATIONS LIKE
WHEN SPECIAL EDUCATION STAFF
USED A UNIFORMED RESOURCE POLICE
OFFICER IN PUBLIC WAYS.
WE GENERALLY STRUGGLED TO FIND
THE RIGHT SCHOOL ENVIRONMENT
WITH SEVERAL PLACEMENT CHANGES
EACH BECOMING INCREASINGLY MORE
RESTRICTIVE NOT CONDUCIVE TO
SUPPORTING MY SON.
HE CURRENTLY RECEIVED SCHOOL
SERVICES, TWO HOURS A DAY AS A
YOUNG ADULT WHICH ARE FOCUSSED
ON COMMUNICATION AND
SELF-ADVOCACY SKILLS BUT AT THIS
STAGE IT'S DISAPPOINTING HE'S
ALONE WITH NO PEER INTERACTION
AND NO COMMUNITY-BASED
INSTRUCTION.
FROM A THERAPY STANDPOINT, MY
SON HAS BEEN DISCHARGED THREE
TIMES AND NOT ACCEPTED FROM
OTHERS BECAUSE THEY WERE NOT SET
UP TO HANDLE HIS INTENSE
BEHAVIOR.
.
AS AN ADULT THERE'S ACCESS FOR
RESPITE AND CLS WE'VE NEVER BEEN
ABLE TO STAFF AND DOESN'T SEEM
TO BE ANY INFRASTRUCTURE IN
PLACE TO PROVIDE THE STAFFING
FOR THAT.
WE HAVE USED OUT PATIENT
PSYCHIATRIC ASSISTANCE AND
MEDICATION HAS BEEN HELPFUL BUT
NOT LIFE CHANGING.
JUST FIELD LIKE I'M DEALING WITH
SERIOUS SIDE EFFECTS AND FROM A
CRISIS STANDPOINT UNFORTUNATELY
IF I FIND MYSELF IN AN UNSAFE
SITUATION THE ONLY OPTION IS TO
CALL THE POLICE OR TAKE MY SON
TO THE EMERGENCY ROOM.
NEITHER OF WHICH I'VE USED
BECAUSE THEY DON'T SEEM LIKE
POTENTIAL OPTION AN POTENTIAL
RISK FOR SERIOUSLY MORE TRAUMA.
AND THERE'S SITUATIONS LIKE WHEN
I GOT A PHONE CALL THAT MY
DAUGHTER WAS IN A BAD ACCIDENT
AND BEING TAKEN TO THE HOSPITAL.
IN THAT MOMENT I HAD NO ONE TO
WATCH MY SON AND HAD NO NATURAL
SUPPORTS TO HELP AND THERE'S NO
EMERGENCY OPTION AND CREATE
SAFETY CONCERN FOR MY FAMILY AND
IT'S THAT CREATION OF SAFETY
CONCERNS AND LACK OF SERVICES
FROM SCHOOL AND IN THE COMMUNITY
COMBINED WITH NEEDING TO EARN A
LIVING AND TAKE CARE OF OTHER
FAMILIES THAT LET US TO LOOK FOR
A GROUP HOME AND WE HAVEN'T
EVENTUALLY FOUND ONE AND SEEM
BETTER PREPARED THAN MOST HOMES
BUT PROBABLY MINIMALLY PREPARED
TO HANDLE INTENSE BEHAVIOR AND
THERE ON THE WEEKENDS AND WE'VE
HAD DISCUSSIONS THAT INDICATE
THEY'RE NOT SURE THEY CAN
CONTINUE TO SUPPORT OUR SON
WHILE WE'RE SIMULTANEOUSLY
RECEIVE REPORTS FROM OUR MENTAL
HEALTH AUTHORITY THEY'RE
DECREASING SUPPORT AND THAT'S
WHERE WE ARE RIGHT NOW.
>> THANK YOU.
I'LL ASK ANOTHER QUESTION TO ALL
THE PANELISTS AND IF YOU CAN
KEEP IT SOMEWHAT BRIEF TO HEAR
FROM EVERYBODY, WHATTY -- WHAT
KEY CHANGES ARE NEEDED FOR
AUTISTIC PEOPLE AND ENSURE THEIR
SERVICE ARE MET.
>> ONE OF THE CRUCIAL THINGS IS
BETTER RECOGNITION FOR THE
DISABILITY AUTISTIC PEOPLE HAVE.
EVEN HIGH FUNCTIONAL AUTISTIC
PEOPLE CAN HAVE PERIODS WHERE
THEY ARE PROFOUNDLY DISABLED BY
THEIR SYMPTOMS IN A WAY NOT
CONSISTENT ACROSS TIME.
THIS GETS MISUNDERSTOOD SO
FREQUENTLY BY PEOPLE THAT ARE
NOT FAMILIAR WITH AUTISM BECAUSE
THEY THINK, HEY, I TAUGHT THIS
PERSON A SKILL.
THEY SHOULD BE ABLE TO USE THIS
SKILL ALL THE TIME AND ALL
SETTINGS REGARDLESS OF WHATEVER
ELSE IS GOING ON.
AND THAT'S SIMPLY NOT THE CASE.
HIGH FUNCTIONING CAN VARY
DRAMATICALLY DEPENDING ON
WHETHER WE'RE WELL RESTED,
WHETHER THERE ARE OTHER SENSORY
THINGS INTERFERING.
WHETHER THERE'S OTHER THINGS
GOING ON IN OUR LIVES.
SO MUCH SO WE AS A PROFESSIONAL
YOU SEE ME HERE TODAY IN A
SETTING WHERE I CAN COMMUNICATE
EFFECTIVELY ABOUT MY EXPERIENCES
AND MY UNDERSTANDING OF THINGS.
BUT IN A DIFFERENT SETTING I CAN
HAVE A MELT DOWN OVER A VACUUM
CLEANER.
THAT KIND OF DISPARITY AND
FUNCTIONING IS SOMETHING WE
DON'T SEE VERY OFTEN OUTSIDE OF
AUTISM.
BUT WITHIN AUTISM IT'S THE NORM.
AND IT CAN INTERFERE
SUBSTANTIALLY WITH DAILY
FUNCTIONING FOR A LOT OF
AUTISTIC INDIVIDUALS IN A WAY
THAT DOESN'T GET RECOGNIZED WELL
BY OUR SYMPTOM.
SO WHEN I HAVE AUTISTIC
INDIVIDUALS TRY TO GET ON THE
WAIVER OR TRY TO GET GOVERNMENT
DISABILITY THEY'RE NOT ABLE TO
GET IT BECAUSE THE WAY THESE
THINGS ARE DETERMINED DOESN'T
RECOGNIZE THE TYPE OF
INTERMITTENT DISABILITIES THAT
AUTISTIC PEOPLE HAVE.
AND THEN THERE'S ADDITIONAL GATE
KEEPING.
FOR INSTANCE, TO GET ON THE
AUTISM WAIVER YOU NEED TO HAVE
[INDISCERNIBLE] WELL, AS AN
ADULT, ACCESSING THE ADOLF
TESTING IS INCREDIBLY DIFFICULT.
I TRIED REFERRING DOZENS OF
ADULTS FOR AUTISM WAIVER
SERVICES THEY NEED AND CAN'T
GET.
ACCESS TO SERVICES IS CRUCIAL
AND HAVING OUR DISABILITIES BE
RECOGNIZED.
THAT'S PROBABLY THE BIGGEST
CHANGE I WOULD LIKE IT SEE
HAPPEN IN ADDITION TO ADDITIONAL
TRAINING IS HAVING BETTER
RECOGNITION OF DISABILITY
RELATED TO AUTISM.
>> THANK YOU.
LISA MORGAN.
I'D LIKE TO IMPROVE ACCESSIBLE.
I THINK WE NEED TO ACCESSIBILITY
AND REDUCE UNINTENTIONAL HARM
AND MAKE THE CENTERS AND CRISIS
CALL AND TECH CENTERS, FIRST
RESPONDERS AND EVEN CLINICIANS
SAFE AND ACCESSIBLE FOR AUTISTIC
PEOPLE BY REQUIRING ANYONE
SUPPORTING AUTISTIC PEOPLE TO BE
CREDENTIALED BY COMPLETING A
TRAINING AND SUBSEQUENT
EVALUATION DEVELOPED BY AUTISTIC
PEOPLE IN COLLABORATION WITH
NON-AUTISTIC ALLIES.
THE ONLY PEOPLE TO KNOW WHAT
IT'S LIKE TO LIVE WITH AUTISTIC
PEOPLE HAVE AUTISTIC PEOPLE AND
IMPROVING SERVICES OF AUTISTIC
PEOPLE NEED TO BE DESIGN,
DEVELOPED AND IMPLEMENTED BY
AUTISTIC PEOPLE IN COLLABORATION
WITH NON-AUTISTIC ALLIES.
THE SOLUTION TO IMPROVED MENTAL
HEALTH IN AUTISTIC PEOPLE AND
ENSURE THEIR SERVICE NEEDS ARE
BEING MET AND MORE IMPORTANTLY
THEY'RE NOT BEING
UNINTENTIOUNINTENTIONAL
LY HARMED LIES WITH AUTISTIC
PEOPLE.
THAT WAS IN FIRST ONE I MISSED.
AUTISTIC PEOPLE ARE DYING UP TO
SEVEN TIMES HIGHER THAN THE
REGULAR POPULATION AND THEY'RE
NOT INCLUDED IN THE LIST OF
VULNERABLE POPULATIONS.
THE RESOURCES BEING DEVELOPED BY
THE WORK GROUP THAT I FOUNDED
AND STILL CO-CHAIR IN 2017,
THEY'RE BEING USED IN BRAZIL AND
THE MAINSTREAM MEDIA IN BRAZIL
ARE SUPPORTING THEM AND HAVING A
SOCIAL IMPACT.
THEY SEE THE VALUE OF HAVING
AUTISM SPECIFIC RESOURCES
DEVELOPED WITH AUTISTIC PEOPLE
AND THE RESOURCES TO SUPPORT
AUTISTIC PEOPLE AS AUTISTIC
PEOPLE ARE VALUABLE SO I'D LOVE
IT IF WE WOULD USE THIS.
>> THANK YOU.
KAYLA RODRIGUEZ.
SO TWO THINGS BUT I'LL TRY TO BE
AS BRIEF AS I CAN.
FIRST, PROFESSIONALS NEED TO BE
BETTER TRAINED TO PREVENT
BURNOUT AND PREVENT CRISIS.
I'D LIKE TO SEE DOCTORS TREAT
AUTISTIC PEOPLE AS HUMANS
BECAUSE AUTISTIC PEOPLE ARE
HUMANS TOO THOUGH WE GO THROUGH
THE SAME THINGS AS EVERYBODY
ELSE DOES JUST IN DIFFERENT WAYS
AND I JUST WISH DOCTORS DON'T
JUST FOCUS ON THE AUTISM AND
FOCUS ON EVERYTHING ELSE THEY
HAVE INCLUDING MENTAL HEALTH
WHICH I BELIEVE IS JUST AS
IMPORTANT AS PHYSICAL HEALTH.
IT REALLY IS.
MENTAL HEALTH SHOULD BE TAKEN
MORE SERIOUSLY AND SHOULDN'T BE
A TABOO TOPIC.
I ALSO BELIEVE THAT LIKE SPECIAL
INTERESTS THAT PEOPLE HAVE ARE
GOOD BECAUSE THEY BRING AUTISTIC
PEOPLE JOY AND SHOULDN'T BE
TAKEN AWAY FROM THEM AND TRANS
PEOPLE FOR EXAMPLE CAN BE
AUTISTIC AND PEOPLE OF COLOR CAN
BE AUTISTIC SO WE'RE MOVING
GENDER AFFIRMING CARE CAN WORSEN
THE MENTAL HEALTH OF AUTISTIC
PEOPLE IN THOSE INTERSECTIONS.
AND AUTISTIC PEOPLE DEAL WITH
TRAUMA AND AUTISTIC PEOPLE NEED
RESOURCES SPECIFICALLY MADE FOR
THEM TO HELP DEAL WITH TRAUMA.
BECAUSE WE DEAL WITH TRAUMA A
LOT LIVING IN A WORLD THAT
DOESN'T ACCOMMODATE OR ACCEPT US
WE NEED TRAUMA RESOURCES
SPECIFICALLY FOR US AND I
STRUGGLE WITH TRAUMATIC BECAUSE
OF MY PTSD.
I DON'T KNOW HOW TO DEAL WITH
IT.
I DON'T KNOW HOW PEOPLE ARE
SUPPOSED TO WITH THE RESOURCES
OUT THERE.
THAT'S WHAT WE SEE.
HOW DO AUTISTIC PEOPLE DEAL WITH
TRAUMA LIKE THAT?
OTHER THINGS I'D LIKE TO SEE IS
DON'T TAKE ALTERNATIVE DEVICES
AWAY FROM AUTISTIC PEOPLE IF
THEY NEED THEM BECAUSE IT WILL
HELP COMMUNICATE THEM IF THEY
GET THEM TAKE N AWAY IT'S WORS
FOR THEIR MENTAL HEALTH AND I
WANT TO SEE MORE FUNDING FOR
MENTAL HEALTH.
THREE YEARS AGO THE LAST
HOSPITALIZATION I'VE HAD AND
I'VE HAD A FEW FOR SUICIDE TEAMS
AND THE PLACE WAS SUMMIT RIDGE
IN LAWRENCEVILLE, GEORGIA.
DO NOT SEND ANYBODY THERE
BECAUSE IT WAS THE WORSE PLACE
I'VE EVER BEEN TO.
I THOUGHT I WAS NEVER GOING TO
GET OUT.
I FELT THREATENED.
THERE WAS FIGHTING AND PEEING ON
CHAIRS AND THE FLOOR.
IT WAS A REALLY DISGUSTING PLIS
AND I THINK IF THERE WAS MORE
FUNDING MORE MENTAL HEALTH IN
GENERAL IN THE MENTAL HEALTH
HOSPITALS THEN MAYBE SUMMIT
RIDGE WON'T BE SO BAD AND I FEEL
LIKE WE NEED MORE MENTAL HEALTH
FUNDING IN GENERAL SO PLACES
LIKE SUMMIT RIDGE CAN GET BETTER
AND I AGREE WITH WHAT EVERYBODY
ELSE WAS SAYING WAS WE NEED
SPECIFIC RESOURCES FOR AUTISTIC
PEOPLE TO DEAL WITH SUICIDE.
YEAH, THANK YOU.
>> THANK YOU.
IAN NEUMAIER.
>> I DON'T HAVE MUCH TO ADD AND
AMPLIFYING EVERYTHING THE
PREVIOUS SPEAKER MENTIONED AND
SOMETHING THAT RESONATED IN
MANDATING TRAINING FOR FIRST
RESPONDERS AND EMERGENCY AND
MEDICAL PROFESSIONALS.
I THINK THAT'S CRUCIALLY
IMPORTANT.
THE ABSENCE RESULTS IN AN UNTOLD
NUMBER OF VIOLENT INTERACTIONS
POLICE AND CIVILIANS NOT TO
MENTION DEATHS OF COURSE.
>> THANK YOU.
MO
MORENIKE.
>> I THINK IT NEEDS TO BE
PRACTICAL AND SOLUTION BASED AND
ADDRESS THE SITUATION THAT
PEOPLE ARE DEALING WITH.
IS IT ANXIETY OR SENSORY
WHATEIS
HAPPENING.
A LOT OF US HAVE CONNECTED TO US
SO THE WELL BEING OF THOSE
AROUND US AND FAMILY AT LARGE
IT'S A MODEL THEY TAKE IN EARLY
CHILDHOOD WITH THE INTEGRATED
FAMILY SERVICE PLAN IS ONE THAT
SHOULD BE CONSIDERED CROSS THE
LIFE SPAN.
THE MENTAL HEALTH NEEDS TO BE
MORE INTERSECTIONAL TO ADDRESS
ISSUES THAT'S CULTURALLY
COMPETENT AND ADDRESS THE OTHER
PART OF A PERSON BECAUSE WE'RE
NOT JUST ONE DIMENSIONAL AND
NON-PUNITIVE.
PEOPLE CALLING THE POLICE NOT AN
OPTION.
I'M NOT CALLING THE POLICE ON MY
CHILD.
I DON'T CARE IF THEY'RE HITTING
ME.
NEITHER ONE OF US MIGHT MAKE IT.
THAT'S IN THE GOING HA TO
HAPPEN AND PEOPLE DON'T
UNDERSTAND THE NUANCES OF
DISABILITY AND YOU CAN HAVE RISK
OF CHILD PROTECTIVE SERVICES I'M
SPEAKING TO DISRUPT OPPOSED TO
SUPPORT.
IT NEEDS TO BE AFFORDABLE AND
ACCESSIBLE AND FLEXIBLE AND I
THINK THEY NEED TO BE
PREVENTATIVE.
IT SHOULD NOT BE WHEN A PERSON'S
IN SEVERE CRISIS AND PEOPLE HAVE
INCREASED TO THE POINT WHERE NOW
THERE'S CONSTANT AGGRESSION OR
UNREST AND SO FORTH AND YOU HAVE
NO CHOICE THE COUNTY CRISIS
TEAM.
YOU SHOULD BE ABLE TO RECEIVE
HELP BEFORE IT GETS TO THAT
POINT.
UPP
UPPER MODELS FOR EXAMPLE HIV
WRAP-AROUND CARE AND HOW THEY'RE
ADDRESSING A PERSON ACROSS THE
LIFE SPAN AND THEIR FAMILIES AND
WE NEED TO DO SOME OF THAT.
THANK YOU.
>> THANK YOU.
ANGIE.
>> I THINK WE NEED TO FIRST OF
ALL ACKNOWLEDGE PEOPLE LIKE MY
SON ARE NOT ABLE TO GET THE
SERVICES THEY NEED BECAUSE OUR
CURRENT SYSTEM DOES NOT KNOW HOW
TO SAFELY SUPPORT PEOPLE WITH
DISRUPTIVE BEHAVIOR LIKE
AGGRESSION.
WE NEED TO RECOGNIZE IT'S
RELATED TO DISABILITY AND THEY
SHOULD NOT BE CRIMINALIZED LIKE
POLICE OR EXCESSIVE SCHOOL
SUSPENSIONS.
WE THESE TO DIG DEEP TO MAKE
SURE WE'RE MEETING EVERYONE'S
CRITICAL NEEDS SUCH AS SENSORY
AND COMMUNICATION AND MEDICAL
AMONG OTHERS AND WE NEED TO RELY
ON THE AUTISTIC COMMUNITY TO
BETTER UNDERSTAND HOW TO MEET
THE NEEDS AND NEED MORE
RESEARCH.
OUR FAMILY HAS WORKED SO HARD
TRYING TO ACCOMMODATE ALL MY
SON'S NEEDS AND WE HAVE HAD
SUCCESS FINDING HOW TO SUPPORT
HIS LOWER LEVELS OF AGITATION.
WHEN IT APPEARS TO BE SUDDEN AND
INTENTION RESPONSE WITH
AGGRESSION WITH NO OBVIOUS CAUSE
STILL PERSIST AND WE NEED MORE
RESEARCH TO UNDERSTAND WHAT
SEEMS TO BE A PHYSIOLOGICAL
RESPONSE FOR SOME PEOPLE AND
UNDERSTAND HARD WORK AND WE NEED
TO GET PROPER SUPPORT AND
TRAINING AND RESOURCES TO
ADDRESS SUPPORT WORKERS AND
EDUCATORS AND THERAPISTS TO KNOW
HOW TO SAFELY AND EFFECTIVELY
HELP.
I GO BACK INTO MY OTHER NAL
THOUGHT WE NEED TO ACKNOWLEDGE
THE MENTAL HEALTH NEEDS SO
PEOPLE LIKE MYSELF SEE THE NEEDS
NOT MET AND I WOULD LOVE TO TELL
YOU ABOUT MY SON'S WONDERFUL
QUALITIES BECAUSE THERE'S MANY
BUT SINCE IT'S A MENTAL HEALTH
FORUM I HAD TO FOCUS ON HIS
HARDEST MOMENTS AND HIS
OPPORTUNITIES IN LIFE ARE
LIMITED BY HIS HARDEST MOMENTS
AND COMMUNICATION AND RECREATION
AND WORK SKILLS ARE ALL HINDERED
BY UNMET NEEDS AND HE'S A GREAT
GUY AND I CAN'T OVER STATE HOW
DIRE HE IS.
THANK YOU.
>> THANK YOU FOR SHARING YOUR
PERSONAL AND PROFESSIONAL
PERSPECTIVE.
WE'LL TAKE QUESTIONS FROM THE
COMMITTEE.
DENA.
>> THANK YOU TO EVERYONE.
I THINK YOUR COMMENTS AND
SHARING TODAY WERE REALLY INFORM
TICK AND -- INFORMATIVE AND
EMOTIONALLY DEMANDING.
I WANT TO SAY I THINK THE THING
WE'RE NOT TALKING ABOUT TODAY IS
THE LACK OF RESEARCH AROUND
PEOPLE WHO SURVIVED.
WE AREN'T LOOKING AT RESILIENCE
FACTORS IN THIS COMMUNITY AND
HOW PEOPLE GET PAST THESE
TRAUMAS AND PAST THE MENTAL
HEALTH CRISIS TO REACH SOME
LEVEL OF PERSONAL SATISFACTION.
I THINK UNTIL WE DECODE HOW THEY
DO THINGS TO INFORM MENTAL
HEALTH SERVICES WE'RE LIMITING
OURSELVES.
I'D ALSO LIKE TO DISCUSS FROM MY
PERSONAL EXPERIENCE THE MEDICAL
TRAUMA THAT AUTISTIC PEOPLE
ENDURE WHEN THEY PRESENT WITH
MENTAL HEALTH ISSUES BUT THEY'RE
A MANIFESTATION THAT NEVER
IDENTIFIED AUTISM.
I MYSELF PRESENTED WITH
DEPRESSION AND ANXIETY THAT WERE
ACTUALLY A RESULT OF MONTHS OF
EARLY CHILDHOOD SLEEP
DEPRIVATION FROM MY KIDS AND I
DIDN'T KNOW I WAS AUTISTIC
THOUGH I HAD A CHILD ON THE
SPECTRUM AND THEY DIAGNOSED ME
WITH BIPOLAR DISORDER WHICH COST
ME BASICALLY TEN YEARS OF MY
WHOLE LIFE MY 30s WAS BEING OVER
MEDICATED OR UNDER MEDICATED.
IT FRUSTRATES ME IN MY FIELD OF
SOCIAL WORK WE'RE NOT TRADING
SOCIAL WORKERS HOW TO RED FLAG
THE POSSIBILITY SO A PERSON CAN
BE EVALUATE THE BEFORE THEY'RE
MEDICALLY MALTREATED.
THOSE ARE MY TWO TALKING POINTS
BUT I APPRECIATE EVERYBODY'S
INPUT AND HEAVY TOPIC BUT
CRITICALLY NEEDED.
>> I BRIEFLY SAW HARI'S HAND UP
BUT I THINK IT WENT DOWN.
AND NEXT SCOTT.
>> THANK YOU, DR. DANIELS AND
FOR THE GREAT SESSION COMMUNITY
SPECIFICS ON MENTAL HEALTH.
IT RESONATED WITH ME AND AGREE
WITH DENA A LOT OF THIS IS
STRESSFUL TO TALK ABOUT AT TIMES
BUT SO IMPORTANT.
THERE'S IMPACT ON EMPLOYMENT
IT'S A MAJOR IMPACTER IN FOLKS
MAINTAINING ADVANCE IN THEIR
CAREERS.
I'M ALSO GLAD THAT YOU ALL
BROUGHT UP THAT WE NEED TO HAVE
ADJUSTMENTS TO HOW WE THINK
ABOUT ASSESSMENTS AND TESTING
AND THINGS LIKE THE ADOLF
TESTING SYSTEM AND ONE
ADDITIONAL FACTOR FOR THE ADOS
IS THEY OFTEN DON'T PICK UP
ADULTS WHO ADAPTED OR
COMPENSATED OR MASK, ETCETERA.
I'M AN EXAMPLE OF THAT WHERE IF
I WAS ON A STUDY I MAY NOT SHOW
UP AS SCIENTIFIC ASA -- AS ADOS
AND I HAVE ALL THE TRAITS.
I DON'T KNOW IF THIS IS A
COMPLEX QUESTION TO ASK ABOUT
THE ROLE OF TECHNOLOGY IN
HELPING ADDRESS THE CHALLENGES
I'VE EXPERIENCED AND I THINK
THAT'S SOME OF THE SOLUTION I
THINK FOR HAVING IMPROVEMENTS
AND ADVANCEMENTS AND SOME IS
EMERGING TECH FROM A GOOD
STANDPOINT OF HOW IT CAN BE
ADDRESSING MENTAL HEALTH AND
WELL BEING.
I WONDERED IF FOCUS HAVE MORE
THOUGHTS ON INNOVATIVE
TECHNOLOGY INCLUDING MOBILE
TECHNOLOGY HELPFUL FOR
EMPOWERING MENTAL HEALTH
SUPPORTS.
>> ANY RESPONSE FROM THE GROUP?
LISA.
>> THE COMMENT ON PEOPLE WHO
STAY.
I THINK A LOT OF IT HAS TO DO
WITH REASONS FOR LIVING.
I WOULDN'T LEAVE THOUGH I WANTED
TO BECAUSE OF MY KIDS.
OTHER AUTISTIC ADULTS REASONS
FOR LIVING THEY'RE BASED AROUND
SENSE OF PURPOSE AND AUTISTIC
ADULTS MAY NOT HAVE A SENSE OF
SELF.
IF YOU CAN BUILD A LIST AND
COULD BE ONLINE OR PAPER AND
HAVE THAT REASON FOR LIVING LIST
WITH THEM WHEN THEY GET INTO THE
CRISIS AND WHY THEY WANT TO LIVE
HOPEFULLY THAT ANSWERS YOUR
QUESTION.
>> ANYONE ELSE ON THE PANEL WANT
TO RESPOND?
YOU CAN JUST SPEAK UP.
>> CAN YOU HEAR ME, THIS IS IAN.
I THINK SCOTT ASKED A GREAT
QUESTION.
THERE'S A GREAT DEAL OF
OPPORTUNITY WITH THE
ACCESSIBILITY OR UBIQUITY OF
THINGS LIKE GENERATIVE A.I.
HOWEVER, THEY COULD IN MISUSED
BUT IF WE'RE LOOK FOR
PROGRESSIVE POSITIVE USES I CAN
THINK IN MY OWN CONTEXT DECADES
AGO STUDYING PEOPLE'S BEHAVIOR,
LEARN HOW TO MODEL IT AN TEST
THINGS OUT.
I CAN THINK OF A GENERATIVE
SYSTEM THAT MAY BE DEVELOPED
PARTICULARLY FOR THE PURPOSES OF
HELPING PEOPLE PREPARE AND
ANTICIPATE UPCOMING INTERACTIONS
AND THINGS LIKE THAT.
THAT'S SOMETHING WITHIN THE
GRASP OF TECHNOLOGY WE HAVE
RIGHT NOW.
UP TERMS OF APPS AVAILABLE HAD
MY TIME IN COLLEGE BEEN
ACCOMPANIED BY SOME ASSISTIVE
TECHNOLOGY CONSULTATION WHERE
THERE WAS A SUITE OF
TECHNOLOGICAL APPLICATIONS FOUND
TO BE USEFUL FOR AUTISTIC FOLKS
WOULD HAVE BEEN GRET.
MAY HAVE INCLUDED SPEECHIFY
WHICH RIGHT NOW IS SUPER
EXPENSIVE.
THE ABILITY TO HAVE INFORMATION
IB DIFFERENT FORMATS AN IT'S A
MATTER OF ORGANIZING THE THINGS
TO BE AVAILABLE TO STUDENTS ON
DEMAND.
>> HARI SAID THE ONLY TWO
SOLUTIONS BEING OFFERED RIGHT
NOW FOR BEHAVIOR LIKE AGGRESSION
AND SIB AS THEY RELATE TO MENTAL
HEALTH ARE EITHER PSYCHO TROPIC
MEDICATIONS OR BEHAVIOR THERAPY.
THE BOTTOM LINE IS NEITHER
WORKED.
>> THANK YOU.
ANY COMMENTS FROM THE PANEL?
LISA.
>> BEING HONEST IN WHAT'S OUT ON
THE INTERNET IS YOU CAN SEARCH
FOR DIFFERENT WAYS TO DIE AND
WHEN YOU SEARCH FOR WAYS TO
LIVE, AUTISTIC PEOPLE ARE NOT
INCLUDED ON THOSE NATIONAL
SUICIDE PREVENTION WEBSITES.
JENNY.
>> THANK YOU FOR THE DISCUSSION
AND EVERYONE WHO SHARED STORIES.
MY QUESTION IS ABOUT AUTISTIC
PEOPLE WHO MAY BE NEED SUPPORT
OR EMOTIONAL PROBLEMS TO SEEM
QUA THEY'RE LOOKING FOR.
DO THEY NOT KNOW WHAT HELP THEIR
SEEKING AND MAY BE STRUGGLING
WITH HOW TO IDENTIFY THEIR
PROBLEMS.
CAN ANYONE ON THE PANEL ADDRESS
THAT?
>> THE SUICIDE PREVENTION WORK
GROUP TALKS ABOUT JUST THAT.
WE HAVE MORE RESOURCES AVAILABLE
AND WORKING ON THE FIFTH AND
TALK ABOUT THE PRESENTATION OF
AUTISTIC PEOPLE IN A CRISIS AND
EVERYTHING'S HAPPENING ON THE
INSIDE.
WE HAVE SUICIDE PEOPLE THAT
COVER EVERY THING THAT CAN
HAPPEN WITH AGE AUTISTIC PERSON
IN CRISIS AND WHAT TO DO AND
EMERGING RESEARCH FINDINGS.
ALL AVAILABLE AND DOWNLOADABLE
ON WWW.AUTISMCRISISSUPPORT.com.
>> THANK YOU.
MO
MORENIKE.
>> THAT'S A SITUATION EIGHT OF
US FACE WHERE YOU DON'T KNOW HO
YOU FEEL OR WHAT IS NEEDED AND
AS MENTIONED THEY NOT PICK UP
THE WAY WE FEEL.
I'M GRATEFUL WE HAVE GROUPS SUCH
AS ASPIRE TAKING A NUMBER OF
EXISTING TOOLS AND WORKING
COLLABORATIVELY WITH RESEARCHERS
AND NON-AUTISTIC AND AUTISTIC
RESEARCHERS AND OTHER LEADERS TO
MAKE VERSIONS TO MODIFY THESE
TOOLS, THESE TO MAKE THEM MORE
VALUABLE.
I'D LIKE TO SEE MORE WORK
HAPPENING WITH OTHER
INSTITUTIONS DOING THE SAME.
IN WORKING WITH THE IV CENTER
AND GLOBAL IDD WORK IN GENERAL
AND THEN THERE'S THE WORK AT THE
AUTISM INSTITUTE.
THERE'S A POLICY AND A SOCIAL
DYNAMICS OF NETWORKS LOOKING AT
OTHER PIECES BECAUSE SOMETIMES
IT'S THE ONES AROUND US TO PICK
UP AND MAY MANIFEST IN MISS --
PHYSIOLOGICAL TEAM.
>> WHAT CAN WE SAY ABOUT
ADVANCES WITH PHYSIOLOGIC
SENSORS AND WEARABLES IN TERM OF
THESE BEHAVIORS.
>> WE'RE USING THAT CURRENTLY IN
OUR RESEARCH.
WE LOOKED AT AGGRESSION AND
SELF-INJURY AND ONE OF OUR
PROJECTS IS WEARING
PHYSIOLOGICAL SENSORS FOR TWO
WEEKS AND TRIGGERED BY CHANGES
IN PHYSIO AND HALF THE TIME ARE
TRIGGER AND HALF THE TIME NOT
AND YOU CAN IDENTIFY SIGNS OF
DISTRESS AND MARKERS OF INJURY.
THERE'S MORE WORK TO MAKE IT
SPECIFIC AND ACCURATE ENOUGH BUT
THERE'S MOVEMENT IN THE AREA AND
THE CHILD WOULD BE DOING IT WITH
MEASURES IN PHYSIOLOGY MORE
WIDELY AVAILABLE AND CHEAPER.
>> I THINK HARI HAD HIS HAND UP
AND THAT WILL BE THE LAST
QUESTION.
>> HE ASKS THAT SELF-INJURY
BEHAVIORS COULD BE A FORM OF
SUICIDAL THOUGHTS ESPECIALLY WHO
DON'T HAVE THE MOTOR SKILLS OR
BO
BODY REGULATION TO ATTEMPT?
>> IT'S INTERESTING THAT WAS
MENTIONED BECAUSE I LOOKED AT
SOME OF THE LITERATURE WHERE TAY
TALK ABOUT LOWER SUICIDE
BEHAVIOR AND PROPERTY
DESTRUCTION.
HOW DO KNOW IT'S A FORM OF
COMMUNICATION AN I THINK ABOUT
MYSELF WITH THE DIAGNOSIS OF
EARLY ONSET DEMENTIA SOMETIMES
I'LL NOT BE ABLE TO PERFORM
SPECIFIC FUNCTIONS OR CAN'T
RECALL MY CHILD'S NAME AND I
KNOW HOW FRUSTRATED AND A LOT OF
TIMES PEOPLE SAY ANGER CAN
REPRESS SADNESS.
FOR SOME SELF-INJURIOUS BEHAVIOR
I'VE ENGAGED IN HAS THAT SLANT
IN IT AND I DON'T THINK I'M
ALONE.
>> AND LISA.
>> I'VE HEARD FROM A LOT OF
AUTISTIC ADULTS THAT
SELF-INJURIOUS BEHAVIOR CAN ALSO
BE SUICIDE PREVENTION IN THAT IT
CAN REDUCE OVERWHELMING EMOTIONS
THAT MAY CAUSE THEM TO DIE BY
SUICIDE AND THAT SELF-INJURIOUS
BEHAVIOR CAN REDUCE THOSE
EMOTIONS TO THE POINT WHERE THEY
CAN START REGULATING INSTEAD.
>> THANK YOU SO MUCH.
THIS HAS BEEN A REALLY
ENLIGHTENING DISCUSSION.
WE APPRECIATE OUR PANEL EFFISTS
QUESTIONS.
I'LL TURN IT BACK TO DR. GORDON.
>> I WANT TO ADD MY THANKS TO
THE PANELISTS VIRTUAL AND IN
ATTENDANCE.
I'LL ASK FOR THE NEXT SET
PANELISTS TO COME UP WE'LL SWAP
OUT THE FOLKS AT THE HEAD OF THE
TABLE.
WHILE I DO THAT I'LL INVITE OUR
COMMITTEE MEMBERS IN PERSON TO
STAND UP AND STRETCH BUT ASK YOU
NOT TO LEAVE.
WE'RE GOING TO TAKE A MOMENT'S
BREAK.
IF YOU NEED TO USE THE RESTROOM
OR GET A GLASS OF WATER BY ALL
MEANS DO TO BUT WE'LL TRY TO GO
TO THE NEXT PANEL SO IF YOU
DON'T HAVE TO, DON'T LEAVE THE
ROOM.
OKAY.
IT'S MY PLEASURE TO CONTINUE THE
FOCUS ON THE MENTAL HEALTH NEEDS
OF AUTISTIC POPULATION AND THE
FINAL SESSION FOCUSES ON
ADDRESSING THE NEEDS.
WE HAVE THREE PANELISTS.
TWO VIRTUALLY.
ONE IS STACY NONNEMACHER AND ONE
JOINING IN PERSON, JONAH
CUNNINGHAM.
HOPEFULLY DR. NONNEMACHER CAN
JOIN US AND TALK ABOUT THE LINK
CENTER A NATIONAL RESOURCE
CENTER FUNDED BY THE
ADMINISTRATION FOR COMMUNITY
LIVING OF COURSE ONE OF THE
MEMBER AGENCIES OF THE IACC.
DR. NONNEMACHER.
WELCOME.
>> HI THERE, GOOD AFTERNOON,
EVERYONE.
FIRST I'D LIKE TO THANK FOR THE
INVITE TO TALK ABOUT WHAT OTHERS
BEFORE ME HAVE HIGHLIGHTED AS
IMPORTANT TOPIC IN THIS FIELD.
I'M HONORED TO TALK WITH THE
LINK CENTER A FIVE-YEAR GRANT
AWARDED IN SEPTEMBER OF 2022
THROUGH THE ADMINISTRATION OF
COMMUNITY LIVING.
WHY IS THIS GRANT BE SUPPORT AND
SUPPORTING PEOPLE WITH
CO-OCCURRING COGNITIVE AND
MENTAL HEALTH CONDITIONS
SUPPORTS ARE ON AN
INDIVIDUALIZED INTEGRATED
APPROACH THE PANEL BEFORE
ELOQUENTLY TALKED ABOUT AND TO
ME THAT MEANS SOMEONE SHOULD BE
ABLE TO ACCESS BEHAVIORAL
HEALTH, HABILITATIVE SERVICES
AND PHYSICAL HEALTH SUPPORT
DEPENDING ON WHAT THEY NEED.
SYSTEMS ARE NOT SET UP TO
SUPPORT THIS AND SUPPORTERS MAY
IN THE HAVE THE SKILLS.
WHAT THIS SLIDE IS SAYING AND
THE PREVIOUS PANEL HIGHLIGHTED
IS WE KNOW WE HAVE TO BUILD CAST
OF THE WORKFORCE AND SYSTEMS TO
SUPPORT PEOPLES WHOSE NEEDS
TOUCH MULTIPLE SYSTEMS AND NEED
A CONTINUUM OF COMMUNITY
SERVICES THAT FOCUSES ON
PREVENTION AND NOT JUST CRISIS
FOR PEOPLE.
WE KNOW WE NEED TO LOOK AT
FLAWED POLICY AND SYSTEMS NEED
TO COLLABORATE AND NOT JUST
PLACEMENTS OR ONE DIMENSIONAL
ANSWERS.
AND MOST IMPORTANTLY ALL THIS
NEEDS TO BE INFORMED AND GUIDED
BY PEOPLE WITH LIVED
EXPERIENCES.
ALL THESE PIECES AND ELEMENTS
ARE AT THE CORE OF THE GRANT.
LET ME TAKE A STEP BACK.
WE'LL GO TO THE NEXT SLIDE.
THIS WAS AWARDED TO THE NATIONAL
ASSOCIATION FOR DUAL DIAGNOSIS
AND NASDDDS AND THEY'VE BEEN
SUPPORTING WAYS IN STATE TO
SUPPORT PEOPLE WITH CO-OCCURRING
AND MENTAL HEALTH SUPPORT NEEDS
AND RECOGNIZING THE POWER AND
PARTNERSHIPS TO TACKLE THIS NEED
WE CONVENED A ROUNDTABLE
DISCUSSION WHERE PROMISING
PRACTICES WERE IDENTIFIED.
PRACTICES LIKE OPPORTUNITIES TO
TRANSCEND STRUCTURAL STILL PIPE
OR MISALIGNED INCENTIVES FOR
PROVIDERS, CLINICAL CAPACITY
BUILDING PARTICULARLY FOR THE
DSP WORKFORCE DEVELOPMENT
SERVICE DESIGN INNOVATION
OPPORTUNITIES AND IN STATE AND
HOW DO WE THINGS DIFFERENTLY AND
ENSURING A LENS ON CULTURAL AND
LINGUISTICALLY APPROPRIATENESS
TO ENSURE MEANINGFUL ACCESS
ACROSS SYSTEMS AND TO THE POINT
MADE EARLIER NOT JUST WHAT'S
AVAILABLE BUT IS IT ACCESSIBLE.
SO THESE WERE THE MOTIVATION FOR
THE PARTNERSHIP WITH THIS GRANT
AND WE'VE ALSO CAPITALIZED ON
THE ENTITY TO ADDRESS THE NEED
OUTSIDE THE GRANT.
WE EMBARKED ON A TWO-YEAR
NATIONAL CLINICAL AND SYSTEM
CAPACITY BUILDING EFFORT THAT'S
OFFERED TO MEMBER STATES.
THIS INCLUDES MENTAL HEALTH AND
TRANSLATED CBT AND DBT FOR
PEOPLE WITH COGNITIVE
LIMITATIONS BUT MAY BENEFIT FROM
THE TREATMENTS.
I'M HARDENED TO HEAR EVERYBODY
TALKING ABOUT THINGS LIKE THE
NEED FOR CAPACITY BUILDING AND
THE NEED FOR TRAUMA-INFORMED
APPROACH.
THE NEED TO ADAPT MENTAL HEALTH
TREATMENT FOR PEOPLE WITH IDD
AND MENTAL HEALTH NEEDS.
IN ADDITION THERE'S OTHERS THAT
FOCUS ON EQUITY AND INCLUSION
AND OUR QUALITY ARM OF THIS
WORK.
SO WE ALSO HAVE SELF-ADVOCATES,
AUTISTIC SELF-ADVOCACY NETWORKS
AND NATIONAL ASSOCIATION OF
STATE HEAD INJURY ADMINISTRATORS
AND COMMUNICATION FIRST AND
NATIONAL FOR SERVICES AND THE
SONORAN CENTER AND OHIO STATE
UNIVERSITY'S MIDSUMMER CENTER.
THE LINK CENTER IS FOCUSSED ON
THREE PRIMARY GOALS.
THE FIRST IS LOOKING AT SYSTEMS
CHANGE AND WHERE TO MAKE
IMPROVEMENT IN POLICY AND
SERVICE DESIGN AND COORDINATION.
THE SECOND IN DIRECT SUPPORT
PROFESSIONALS, CLINICAL
PROFESSIONALS AND GIVING THEM
THE TOOLS AND SUPPORTS THEY NEED
TO SUPPORT PEOPLE WHO HAVE
CO-OCCURRING DIAGNOSES.
AND LAST BUT NOT LEAST WE'RE
FEELING AS IF WE TACKLE THOSE
TWO GOALS SYSTEM CHANGE AND
BUILDING CAPACITY.
THIS WILL OPEN UP ACCESS TO
PEOPLE AND NOT JUST AS LISA
APTLY PUT IT AGAIN, NOT
AVAILABLE SERVICE BUT ACCESSIBLE
SERVICES.
SO IN ORDER TO REACH THESE GOALS
WHILE ALSO MAINTAINING
DIVERSITY, EQUITY AND INCLUSION
AND QUALITY THROUGHOUT AND WE
ARE NOT THE ONLY ONES THINKING
ABOUT THIS AND AS ALL IT
STRAI --
ILLUSTRATED IT AND WE'LL HOST
QUARTERLY LEARNING COMMUNITIES
TO BRING PEOPLE TOGETHER TO TALK
ABOUT SPECIFIC TOPICS THAT WE
FEEL ARE RELEVANT IN THIS FIELD,
IN THIS WORK.
ALSO SHARING WHAT WE THINK ABOUT
AND GETTING FEEDBACK FROM THE
COMMUNITIES AND USING THE
COMMUNITIES WHO HAVE EXPERIENCED
AN EXPERTISE TO HELP US INFORM
OTHER GRANT ACTIVITIES SHARING
RESOURCES, INFORMATION AND
TRAINING.
AND THE IDENTIFYING AND
EMBEDDING OF THE TRAINING TO ADD
TO A NATIONAL REPOSITORY FOR THE
LINK CENTER WEBSITE.
PRIOR I SPENT 16 YEARS I WAS
DIRECTOR OF THE PROGRAMS AND I
SPENT TIME HELPING PEOPLE
NAVIGATE THE SYSTEMS AND HELPING
PEOPLE UNDERSTAND WHY PEOPLE
WERE SHOWING UP THE WAY THEY
SHOWED UP AND HAVING A NATIONAL
REPOSITORY PLACE WHERE ALL
RESOURCES AND INFORMATION AND
TRAINING IS HOUSED WOULD HAVE
BEEN AN AMAZING GIFT FOR
SOMEBODY LIKE WHO IS WORKING IN
THE FIELD WHO WAS TRYING TO
FIGURE THESE THINGS OUT AND ALSO
TRYING TO FIND WHERE THOSE TOOLS
WERE TO HELP ME FIGURE THAT OUT.
SO THAT PARTICULAR THE LINK
CENTER WEBSITE WE'RE LOOKING AT
A WIDE AUDIENCE AND MAKING THIS
AVAILABLE AND ACCESSIBLE FOR
INDIVIDUALS AND FAMILIES AND
OTHER SUPPORTERS LIKE DIRECT
SUPPORT PROFESSIONALS AND OTHER
CLINICAL PROFESSIONALS.
WE'RE REALLY HOPING THAT THROUGH
CURATING THE RESOURCES WE'LL BE
ABLE TO PROVIDE A BETTER
UNDERSTANDING OF WHAT THINGS ARE
OUT THERE AND SHOULD BE ELEVATED
AND TO ALSO ENCOURAGE THE
TRANSLATION OF RESEARCH TO
PRACTICE AND IDENTIFY WHERE THE
GAPS ARE WE CAN POTENTIALLY
ADDRESS THROUGH GRANT RESOURCE
OR OTHER ACTIVITIES LIKE
ENGAGING WITH THOSE EXPERT
CONTRIBUTORS OR HOLDING THOSE
SHARED LEARNING GROUPS.
SO WE HAVE A CONTINUOUS
EVALUATION LOOP FOR ALL OUR
EFFORTS AND THAT'S LED BY THE
CENTER AT OSU BUT ABOVE ALL THE
MOST IMPORTANT COMPONENT TO THE
LINK CENTER IS THE ROLE OF OUR
STEERING COMMITTEE.
OUR STEERING COMMITTEE IS MADE
UP OF A GROUP OF 12 PASSION NAL
PEOPLE WHO REPRESENT DIVERSE
EXPERIENCE AND TASKED TO GUIDE
AND DIRECT THE WORK OF THE GRANT
AND ALREADY HAVE REALLY SHOWN UP
AND WE'VE LEARNED SO MUCH FROM
THEM.
ADDITIONALLY TO SOME EARLIER
COMMENTS WE'RE WORKING WITH
SAMHSA THROUGH THE GRANT TO
INCREASE AWARENESS OF 9-8-8
CRISIS SERVICES IN THE COMMUNITY
AND IT'S A TWO-HANDED CLAP.
WE'RE ALSO WORKING TO INCREASE
THE SKILLS OF LIFE LINE WORKERS
TO BETTER RESPOND TO AND DRUTH
PEOPLE TO APPROPRIATE SERVICES
AND SUPPORTS.
SO WHILE AMBITIOUS THE WORK
THROUGH THIS GRANT IS CRITICAL
TO OUR FIELD AS OTHERS BEFORE ME
HAVE HIGHLIGHTED AND WE KNOW
THAT A GREAT DEAL OF TIME,
ENERGY AND RESOURCES IN STATES
ARE ALLOCATED TO FINDING BETTER
WAYS TO SUPPORT PEOPLE WITH
CO-OCCURRING NEEDS AND BELIEVE
THE MORE WE CAN STRUCTURE OR
SYSTEMS THE MORE WE CAN BUILD
CAPACITY THE BETTER WE'RE ABLE
TO GET PEOPLE WHAT THEY NEED
WHEN THEY NEED IT.
THIS IS WHERE YOU CAN REACH US
AT THE LINK CENTER AND THIS IS
LETTING YOU KNOW OUR WEBSITE
WILL BE COMING SOON SO KEEP
YOU'RE EYE OUT FOR THAT AND
ANOTHER ACKNOWLEDGEMENT TO THE
FUNDER THE ADMINISTRATION OF
COMMUNITY LIVING FOR THEIR
VISION AND LEADERSHIP IN WHAT WE
HOPE WILL BE SUCH AN AMAZING
ASSET TO THE FIELD.
THANK YOU FOR HAVING ME TODAY.
>> THANK YOU.
NEXT WE HAVE DR. PINEALS THE
MEDICAL AND FORENSIC ADVISER FOR
THE CLINICAL DIRECTOR OF THE
PSYCHIATRY AND THE PROGRAM OF
PSYCHIATRY LAW AND ETHIC AT THE
UNIVERSITY OF MICHIGAN.
>> THANK YOU SO MUCH FIRST OF
ALL FOR INVITING ME TO SPEAK AND
I'M EXCITED I'M FOLLOWING MY
COLLEAGUE AND ALL THE EXCELLENT
SPEAKERS THAT CAME BEFORE.
MANY OF MY REMARKS WILL RESONATE
WITH YOUR COMMITTEE.
I'M SPEAKING ON BEHALF OF THE
STATE NATIONAL PROGRAM DIRECTORS
REPRESENTING OVER $41 BILLION
SERVING 7.5 MILLION ANNUALLY IN
ALL STATES AND DISTRICT OF
COLUMBIA AND AFFILIATED WITH
STATE HOSPITAL SERVE 147,000 PER
YEAR.
WE KNOW PEOPLE WITH AUTISM
SPECTRUM DISORDER CAN HAVE
CO-OCCURRING MENTAL ILLNESSES
THOUGH THE PREVALENCE RATES MAY
BE HIGHER.
WE ALSO KNOW BEHAVIORS IS
MANAGED OR INTERPRETED AS MENTAL
ILLNESS GETS INTERPRETED IS NOT
ALWAYS IDEAL AS WE HEARD IN THE
EXAMPLES BEFORE WITH PEOPLE WITH
LIVED EXPERIENCE.
THERE'S IMPORTANCE FOR INCREASED
UNDERSTANDING AND INDIVIDUAL
NEEDS AND INCREASED RESOURCES TO
TREAT INDIVIDUALS ACROSS AND
WITHIN SYSTEMS.
THERE'S BEEN A MYSTICAL GAP
BETWEEN DEPARTMENTS OF MENTAL
HEALTH AND DISABILITY AND FOR
PERSONS WITH AUTISM SPECTRUM
DISORDER INDIVIDUALS WITH ASD
MAY NOT FIT NEATLY INTO EITHER
SILOED AGENCIES.
THERE'S BEEN MANY SHIFTS ACROSS
THE STATES IN HOW THINGS ARE
ORGANIZED IN LARGE PART RELATED
TO MEDICAID AND SPENDING FOR
SERVICES IN THE PUBLIC SYSTEM.
WE KNOW THERE'S NOT ENOUGH STAFF
AND INDIVIDUALS OFTEN PLAYED IN
MORE RESTRICTIVE SETTINGS THAN
NECESSARY TO ADDRESS THEIR
NEEDS.
THERE NEEDS TO BE MORE
ENGAGEMENT BY THE SERVICE SYSTEM
SO FAMILIES CAN PARTICIPATE FOR
YOUTH AND ADULTS.
THESE ARE JUST SOME OF THE
THINGS I'VE IDENTIFIED.
WE ALSO KNOW THAT PEOPLE WITH
CO-OCCURRING BEHAVIORAL HEALTH
AND INTELLECTUAL DEVELOPMENT
DISABILITY CONDITIONS STRUGGLE
TO ACCESS INTEGRATIVE CARE TO
MEET THEIR COMPLEX NEEDS.
AGAIN, PART IS RELATED TO
FUNDING STRUCTURES AND SYSTEM
STRUCTURE WHERE WE HAVE ON THE
ONE SIDE OFTEN FEE FOR SERVICE
TYPES OF ARRANGEMENTS WITH
NARROW ELIGIBILITY CRITERIA AND
MEDICAL NECESSITY CRITERIA THAT
LIMIT ACCESS IN COVERAGE FOR
BEHAVIORAL HEALTH CARE WITH
PEOPLE WITH ADSD AND DEPARTMENTS
OF DEVELOPMENTAL DISABILITIES.
OFTEN WE HAVE TARGETED MEDICAID
WAIVER PROGRAMS BUT THAT MAY BE
LIMITED TO SPECIAL NEEDS
POPULATIONS.
AS YOU HEARD THIS IS MY SLIDE
BECAUSE THE REQUIREMENTS FOR
TRAINING IN GENERAL PSYCHIATRY
AND MANY OTHER MENTAL HEALTH
SPECIALTIES IS VIRTUALLY
NOTHING.
AND THAT SOMETHING THAT WE
REALLY HAVE TO ADDRESS AND THE
LINK CENTER IS ONE OF THOSE
STRATEGIES.
I THINK THE ADMINISTRATION FOR
COMMUNITY LIVING HAS HIGHLIGHTED
TO TRY AND ADDRESS SOME OF THE
GAPS.
AGAIN, YOU HEARD SOME OF THE
BARRIERS.
WE HAVE OPPORTUNITIES TO IMPROVE
HOW THINGS ARE WORKING.
FOR EXAMPLE, MIGRATE FROM
TARGETED POPULATIONS IN LIMITED
WAIVERS TO POPULATION HEALTH
BASIS FOR SERVICE DELIVERY AND
PAYMENT REFORMS.
IT'S GOING TO BE ONE STRATEGY.
LOOKING AT ADMINISTRATIVE CARE
ORGANIZATIONS, BEHAVIORAL HEALTH
AND LONG-TERM SUPPORT SERVICES
AND PROVIDER PARTNERSHIP IN
EMERGING SERVICE DELIVERY
STRUCTURES.
WE ALSO ARE WORKING TO
RE-EXAMINE SPECIALTY CARE AND
WE'VE RECENTLY FUNDED MC3
CONNECT A PROGRAM NOW EXPANDING
TO MORE SCHOOL-BASED
INTERVENTIONS AND ALLOWS FOR
PSYCHIATRIC CONSULTATION THROUGH
PEDIATRICIANS AND PRIMARY CARE
AND OB-GYN AND OTHER PROVIDERS
TO HELP ADDRESS THE NEEDS OF
PEOPLE AND YOUTH WITH
CO-OCCURRING ASD IN MENTAL
HEALTH THAT COME TO THEIR
PROVIDERS FOR CARE WHO MAY FEEL
OVERWHELMED AND NOT SURE OF HOW
TO PROVIDE THAT TYPE OF CARE.
THERE ARE OPPORTUNITIES MORE AND
MORE CROSS-SYSTEM COLLABORATION
AND THERE'S AN EXAMPLE OF
PARTNER ORGANIZATIONS ALL
PARTNERING TOGETHER ON THE LINK
CENTER ALONG WITH OTHERS.
SO WHAT ARE RECOMMENDATIONS FOR
YOUR CONSIDERATION?
FIRST WE HAVE TO ENHANCE
PSYCHIATRIC TREATMENT OPTIONS
ALONG THE CONTINUUM OF CARE
ELIGIBLE FOR PEOPLE WITH ASD.
WE DON'T WANT TO JUST USE IN
PATIENT HOSPITAL BEDS WHICH ARE
NOT EQUIPPED TO MANAGE THE NEEDS
NECESSARILY BUT WANT HOSPITAL
BEDS AVAILABLE WHEN THEY'RE
NEEDED AND APPROPRIATE.
WE NEED TO ENHANCE OPTIONS ALONG
AN ENTIRE CONTINUUM OF CARE.
WE HAVE TO RECOGNIZE CONDITIONS
CAN OCCUR AT THE SAME TIME IN A
PERSON AND SO WE HAVE TO BE ABLE
TO ADAPT AND ADDRESS WHATEVER
THE PERSON IS EXPERIENCING TO
BEST MEET THEIR NEED AND
STRUCTURES TO MEET THE NEEDS AND
ENHANCE WORKFORCE KNOWLEDGE AND
AVAILABILITY.
WE CERTAINLY HAVE TO FOSTER
TRAUMA-INFORMED AND PERSON
CENTERED CARE TO ADDRESS THE
NEEDS IN THE BEST WAY POSSIBLE
AND CONSIDER BIOLOGY AND SOCIAL
CIRCUMSTANCES AND EVEN
ENVIRONMENTAL ISSUES.
I'M INVOLVED IN HELPING IN THE
CONSTRUCTION OF SEVERAL
FACILITIES WHERE WE'RE LOOKING
MORE AND MORE AT MODERN
ENVIRONMENTS TO HELP ADDRESS HOW
TO BEST MEET THE NEEDS OF
POPULATION WHO'S HAVE COMPLEX
HISTORIES.
WE ALSO HAVE TO DEVELOP
ALTERNATIVES TO LAW ENFORCEMENT
ARREST AND INCARCERATION
WHENEVER SAFE AND I SPENT TIME
AS A FORENSIC PSYCHIATRIST.
IT'S CLEAR WE HAVE AN OVER
REPRESENTATION OF PEOPLE WITH
ASD BEING ARRESTED AND BROUGHT
INTO FORENSIC SYSTEMS AND THAT
IS NOT THE BEST PLACE FOR THEM
TO GET THEIR SERVICES MET.
THEIR NEEDS MET.
WE HAVE TO EXPAND CRISIS
SERVICES THROUGH 9-8-8 AND OTHER
AVENUES TO ADDRESS THE NEEDS OF
PEOPLE WITH ASD AND PROMOTE
EXAMPLES LIKE THE ONE THROUGH
HRSA OF PEDIATRIC MENTAL HEALTH
CARE PROGRAMS TO INTERVENE AS
EARLY AS POSSIBLE.
I WANT TO POINT OUT WORK THROUGH
THE SAMHSA ADMINISTRATION.
THIS IS TAKING PLACE THROUGH
MANY YEARS BUT WE LIKE TO CALL
IT OUR BEYOND BEDS EFFORT.
IT'S STARTING IN 2017 WHERE
THERE WAS A BIG PUSH IN THE
MEDIA SPEAKING ABOUT NEEDING
MORE INSTITUTIONAL CARE AND FROM
A POLICY PERSPECTIVE MANY HAVE
BEEN WORKING HARD TO ADDRESS
THAT FRAMEWORK TO SAY NO, WE
NEED A CONTINUUM OF PSYCHIATRIC
CARE THAT BEGINS IN THE
COMMUNITY.
BEFORE WE IDENTIFY WE NEED MORE
HOSPITAL BEDS AS THE SOLE
SOLUTION TO SOME OF THE PUBLIC
MENTAL HEALTH NEEDS.
FROM THERE WE PRODUCED PAPERS
AVAILABLE ON THE WEBSITE AND
THERE'S CONNECTED AND STRONG TO
ADDRESS ISSUES OF SOCIAL
ISOLATION AND LONELINESS AND
STRENGTHENING THE WORKFORCE FOR
THE POPULATION.
THESE ARE TWO PAPERS YOU MAY BE
INTERESTED IN.
ONE IS A PAPER PUBLISHED IN 2017
CALLED THE VITAL ROLE OF
SPECIALIZED APPROACHES PERSONS
WITH DEVELOPMENT AND MENTAL
HEALTH DISABILITIES TURNED INTO
TWO ACADEMIC PEER-REVIEWED
PAPERS THAT WERE PUBLISHED IN
PSYCHIATRIC SERVICES MORE
RECENTLY AND THEN THERE WAS A
PAPER CRISIS SERVICES ADDRESSING
UNIQUE NEEDS THAT SPEAKS TO THE
ISSUES AS IT RELATES TO 9-8-8
AND OTHER CRISIS SERVICES BEING
BUILT OUT AND HEARD ABOUT
BEFORE.
I URGE TO YOU LOOK AT THOSE
PAPERS FOR YOUR ADVOCATION AND
THERE MUST BE ATTENTION TO
BEHAVIORAL AND PERSONAL SUPPORT
AND ABA AND UNDERSTANDING OF BIO
PSYCHOSOCIAL ISSUES AND THE
REQUISITE TRAINING TO MINIMIZE
DISRUPTIONS IN TREATMENT.
WE NEED TO ENCOURAGE ADVOCACY
AND PLANNING FOR WORKFORCE TO
DEVELOP TRAINING MODELS AND
EARLY EXPOSURE IN TRAINING AND
CLINICAL ROTATIONS.
I WANT TO THANK YOU AGAIN FOR
INVITING ME TO SPEAK AND LOOK
FORWARD IF THERE'S COMMENTS OR
QUESTIONS.
THANK YOU.
>> THANK YOU.
WE'LL HAVE COMMENTS AND
QUESTIONS AT THE CONCLUSION OF
THE PANEL AND THE FINAL PANELIST
MR. JONAH CUNNINGHAM THE
PRESIDENT AND CEO OF THE
NATIONAL ASSOCIATION OF COUNTY
BEHAVIORAL HEALTH AND
DEVELOPMENT DISABILITY
DIRECTORS.
THANK YOU FOR JOINING US.
>> THANK YOU FOR HAVING ME.
I'VE LEARNED A LOT TODAY AND
APPRECIATE THE INVITATION.
AS DR. GORDON SAID I'M JONAH
CUNNINGHAM AND HONORED AND
PRIVILEGED TO BE THE CEO OF
COUNTY BEHAVIORAL HEALTH AND
DEVELOPMENT DISABILITY DIRECTORS
AND ALSO IN THE ROLE I SERVE AS
THE EXECUTIVE DIRECTOR OF THE
NATIONAL ASSOCIATION OF RURAL
MENTAL HEALTH AND WE'LL TALK
ABOUT BOTH THOSE ASSOCIATIONS
HERE IN A MOMENT.
THERE'S THREE GOALS.
FIRST INTRODUCE YOU TO THE TWO
ORGANIZATIONS AS WELL AS PROVIDE
AN EVERY VIEW OF THE LOCAL
DEVELOPMENT DISABILITY SYSTEM OR
I/DD SYSTEMS AND HIGHLIGHT
CHALLENGES AND OPPORTUNITIES
SPOKEN ABOUT MY MY COLLEAGUES
FOR COLLABORATION SPECIFICALLY
SURROUNDING 9-8-8 CRISIS
RESPONSE.
ABOUT STATES ESTABLISHED
AUTHORITIES TO DEAL WITH
BEHAVIORAL HEALTH CONCERNS WITH
SUBSTANCE USE AND MENTAL HEALTH.
IT'S NOT APPLES TO ORANGES.
I'D LIKE TO SAY IT'S APPLES TO
APPLES BUT THERE'S A WIDE
VARIETY OF APPLES, GALA, PINK
LATE -- LADY AND GOLDEN
DELICIOUS AND THERE'S LOCAL
AUTHORITIES COUNTY BASED,
REGIONAL, STATE ADMINISTERED.
THERE'S MEDICARE CARVE-INS AND
CARVE-OUTS, LEVY AUTHORITY AND
SOME ADVISORY AND SOME OVERSEE
MEDICAID CONTRACTING.
WE TRY TO REPRESENT ALL THE
AUTHORITIES OR APPLES.
THE BOTTOM LINE IS WE DO IT
THROUGH ADVOCACY AND PART OF AN
ASSOCIATION OF COUNTIES.
ANOTHER ACRONYM.
I APOLOGIZE.
THE OTHER ORGANIZATION AND I LED
THE ASSOCIATION FOR RURAL MENTAL
HEALTH AND THERE'S A VARIETY OF
MEMBERS FROM SERVICE PROVIDERS
TO STUDENTS TO ACADEMICS TO
ADVOCATES ALL WITH A FOCUS ON
INCREASING ACCESS, AVAILABILITY
AND ACCEPTABILITY OF BEHAVIORAL
HEALTH SO MENTAL HEALTH AND
SUBSTANCE USE SERVICES IN RURAL
COMMUNITIES AND AN AFFILIATE OF
NACBHDD AND IT'S AN AFFILIATE OF
MACO AND SO ON.
WITH NARMH WE COMPLETED OUR 50th
CONFERENCE LAST MONTH IN
PITTSBURGH AND WITH OUR FRIENDS
WE PUBLISH A QUARTERLY JOURNAL
FOR RURAL MENTAL HEALTH.
A WICK -- QUICK OVERVIEW OF THE
SYSTEM AND HOW THEY LOOK.
WE ENGAGED IN A PROJECT WHEN WE
WITH THE LOCAL SYSTEM WE KNOW
WHAT THE WORDS MEAN INDIVIDUALLY
BUT NOT ACTUALLY.
SO WE DID TWO THINGS.
WE LOOKED AT TWO STATES AND
LOCAL SYSTEMS TO COMPARE AND
CONTRAST AND TEXAS AND MICHIGAN
AND HEALTH AUTHORITIES AND
LOOKED AT THREE THINGS.
FIRST, AN OVERVIEW OF THE SYSTEM
AND WHAT IS IT IT AND WHERE ARE
THERE AUTHORITIES AND FUNDING
STREAMS AND DO THEY PROVIDE
SERVICES OR OVERSEE SERVICES,
ETCETERA.
SECONDLY THE RELATIONSHIP WITH
MEDICAID SINCE IT'S A NUMBER ONE
PAIR FOR MENTAL HEALTH SERVICES
AND THE RELATIONSHIP WITH THE
CRISIS RESPONSE SYSTEM SINCE THE
LAUNCH OF 9-8-8 AND HOW IS IT
POSITIONED TO HELP PROVIDE
SERVICES, IF NOT AT LEAST
COORDINATE THE DELIVERY OF
SERVICE.
WE HAVE A QR CODE IF YOU'RE
INTERESTED IN READING IT.
I TRIED TO MAKE IT SUCCINCT AND
DIGESTIBLE SINCE WE'RE TRYING TO
DO 50 OF THESE THINGS.
GOING TO THE NEXT SLIDE, ONE OF
THE BIG THINGS WE KNOW WE
LEARNED FROM THE REPORT THE
POPULATION AN OVERLAP AND THEY
DON'T HAPPEN IN A SILO BUT ALSO
THE LOCATION OF LEADERSHIP
MATTERS.
OFTEN WE DEI -- SEE IDD COMBINED
WITH ADULT SERVICES OR CAN BE
LOCATED WITH BEHAVIORAL HEALTH
SERVICES AND THERE'S PROS AND
CONS OF EACH.
DESIGNING SYSTEMS TO DELIVER TO
BOTH POPULATIONS OR
COMORBIDITIES I SHOULD SAY.
LASTLY, FUNDING STREAMS THEY'RE
RENEWABLE AND WHETHER IT'S
MEDICAID REIMBURSEMENT OR
FEDERAL GRANT, THEY ALL HAVE SUN
SET AND POLITICAL TENSIONS BUT
THEY MATTER IN THE LONG RUN THE
SERVICE DELIVERIES TO OUR
COMMUNITIES.
I DON'T WANT TO SOUND POLY
ANNISH AND BUT IT'S A TIME OF
TRANSFORMATION LAST JULY WE
LAUNCHED 9-8-8 EXPANDING THE
SUICIDE PREVENTION LIFE LINE NO
LONGER A 1-800 NUMBER AND
CREATED SOMEONE TO CONTACT AND
RESPOND AND SOMEWHERE SAFE TO
GO.
IT'S STILL BEING BUILT.
OBVIOUSLY YOU LOOK AT A PATCH
WORK SYSTEM WHEN WE TALK ABOUT
CRISIS RESPONSE.
IT OFTEN MATTERS ON LOCAL
LEADERSHIP AND STRUCTURES AND
SYSTEMS IN PLACE AND THE FUNDING
IN PLACE.
THREE PILLARS FOR THAT SOMEONE
TO CONTACT AND SOMEONE TO
RESPOND AND SAFE DO TO GO I
WANTED TO HIGHLIGHT.
9-8-8 ADMINISTERED BY VIBRANT
AND MOBILE CRISIS RESPONSE
THROUGH THE AMERICAN RESCUE PLAN
ACT TO ALLOW FOR AND ENHANCE
MEDICAID MATCH TO DEVELOP A
MOBILE CRISIS RESPONSE SYSTEM TO
ACTUALLY GET PROVIDERS OUT IN
THE COMMUNITIES.
AND LASTLY SOMEWHERE SAFE TO GO.
THERE'S BEEN AN EXPANSION OF THE
CERTIFIED COMMUNITY BEHAVIORAL
HEALTH CLINICS OR WITH CCBHCs IN
12 STATES CERTIFIED COMMUNITY
BEHAVIORAL HEALTH CLINICS AND
DEMONSTRATING TO GO NATIONWIDE
BY 2030 THROUGH THE SAFER
COMMUNITIES ACT OF LAST YEAR.
THERE'S LIMITATIONS WITHIN ALL
THESE.
WE TALKED ABOUT WITH 9-8-8
MAKING SURE IT'S ACCESSIBLE TO
EVERYONE WITHIN THE COMMUNITY
THERE'S ALSO CONCERNS ON LAW
ENFORCEMENT AS WELL AND GEOROUTE
GEO ROUTING AND I'M FROM UTAH
AND THEN HAD TO BE ROUTED TO
MARYLAND.
THAT'S AN ISSUE TALKED ABOUT.
AND BUILDING ON THE CHALLENGES
AND OPPORTUNITIES AND I DON'T
WANT TO SOUND POLLYANNAISH AND
WHETHER I TALK TO MEMBERS ON THE
BEHAVIORAL HEALTH SIDE OF THE
FENCE I WANT TO TALK ABOUT
WORKFORCE AND THE BATTLE FOR
TALENT SUPPLEMENTING WITH PEER
PROFESSIONALS AND MORE DIRE FOR
THOSE ON THE IDE SIDE OF THE
FENCE WITH TURNOVER IN DIRECT
SUPPORT PROFESSIONALS AND THE
NEED TO FOCUS ON THAT AND
PROGRAMS AND THE NATIONAL HEALTH
SERVICE CORPS OR LONE PAYMENT
PROGRAMS AND OTHER
PROSPECTIVELILY AND I KNOW OUR
FRIENDS HAVE EXPERIENCED A BOOM
AND BUST CYCLE OF FUNDING AND
THEY GOT FUNDING AND SLOWLY WENT
AWAY AND BEHAVIORAL HEALTH IS
DIFFERENT BUT WE ALSO ARE AND
AND MEDICAID AND SOMETHING TO BE
AWARE OF AND A NET ON CMS AND
THING THEY'VE DONE AND MAKE SURE
CHILDREN CONTINUE COVERAGE AND
IT WILL BE A CONTINUED ISSUE AND
I'LL NOTE IN THE CONTEXT OF
CRISIS RESPONSE FOR SURPRISE
BILLING GROUND AMBULATORY
SERVICES ARE EXEMPT FROM THAT
LAW.
THERE WAS A LAW IF YOU GO TO A
FACILITY THAT'S IN NETWORK LIKE
YOUR PROVIDER'S OUT OF NETWORK
YOU WOULDN'T GET A SURPRISE
BILL.
THAT COULD HAVE GREAT
RAMIFICATIONS FOR CRISIS
RESPONSE AND ACCESS TO SERVICES.
AND THERE'S BEEN ENHANCED
COLLABORATION BETWEEN SECTORS
WHETHER BEHAVIORAL HEALTH, LAW
ENFORCEMENT, EDUCATION, OLDER
ADULTS AND PUBLIC HEALTH.
THERE'S A NEED FOR THE
COLLABORATION AND THROUGH THIS
THERE'S BEEN NEW APPROACHES THAT
HAVE OCCURRED AND CONTINUE TO
EMERGE.
LASTLY ENGAGEMENT WITH COMMUNITY
ENSURING THERE'S NOTHING ABOUT
US WITHOUT US AND THERE'S THE
IDD WORLD WE NEED TO AMPLIFY IT
FURTHER.
I'LL SHIFT SO WHAT I REFER TO A
COUPLE OTHER PRODUCTS THAT MAY
BE OF INTEREST.
ONE PROJECT WE DID WITH THE
NATIONAL ASSOCIATION OF COUNTIES
WAS TO LOOK AT ALL THE FUNDING
THAT COULD GO TOWARDS THAT
RUBRIC OF SOMEONE TO CONTACT,
SOMEONE TO RESPOND, SOMEWHERE
SAFE TO GO AND TRY TO IDENTIFY
FEDERAL FUNDING STREAMS AND
NON-GOVERNMENTAL FOUNDI IING --
FUNDING STREAMS FOR A CRISIS
RESPONSE SYSTEM.
A FEW INTERESTING TAKES WE
LEARNED THE DEPARTMENT OF
EDUCATION HAS FUNDING FOR THE
CRISIS SYSTEM.
THE DEPARTMENT OF AGRICULTURE
CAN DEVELOP BRICK AND MORTAR
SYSTEMS AND THERE'S NO FUNDING
FOR AUTISM SPECTRUM DISORDER.
WE HIGHLIGHT AND FOCUS ON
SPECIFIC POPULATIONS KEY TO
BUILD OUGHT THAT CRISIS RESPONSE
SYSTEM.
THE FIRST ARE COUNTY OFFICIALS
WE HIGHLIGHT LEADERS TO PROVIDE
INSPIRATION AS THEY GRAPPLE WITH
THIS IDEA OF HOW TO BUILD OUT A
CRISIS RESPONSE SYSTEM THAT'S
RESPONSIVE TO THEIR COMMUNITY.
THE NEXT REPORT WHICH WILL BE
RELEASED THIS MONTH HOPEFULLY BY
END OF MONTH KNOCK ON WOOD IS
FOCUSSED ON INTELLECTUAL AND
DEVELOPMENTAL DISABILITY
DIRECTORS.
WE'RE EXCITED AND IF YOU'RE
CURIOUS ABOUT THE FIRST
MESSAGING DOCUMENT THERE'S THE
QR CODE.
THERE'S MY CONTACT INFORMATION.
IF WE CAN BE OF ANY HELP DON'T
HESITATE TO REACH OUT AND NOTE
ON MY E-MAIL TO MAKE IT EASIER
ON EVERYONE WE DROPPED ONE OF
THE "D"s.
THANK YOU FOR HAVING ME.
IT'S BEEN AN HONOR.
>> THANK YOU VERY MUCH.
ALL THREE PANELISTS TALKING
ABOUT QUALITY SERVICES FOR
INDIVIDUALS WITH AUTISM WHO HAVE
MENTAL HEALTH NEEDS.
I'LL OPEN UP TO MEMBERS OF THE
COMMITTEE AND YETTA.
>> WE'RE HEARING WE NEED TRAINED
PROFESSIONALS TO BUILD CAPACITY
AND OFFER ACCESSIBLE RESOURCES
NOT JUST AVAILABLE BUT
ACCESSIBLE RESOURCES AND
SERVICES AND I WANT IT MAKE SURE
THAT THIS IS SOMETHING WE
INCLUDE IN OUR NEXT STRATEGIC
PLAN THERE'S A FACE-OFF-YEAR
GRANT.
I LOVE THE IDEA -- THERE'S THE
IDEA OF THE FIVE-YEAR GRANT AND
WHO WILL MAINTAIN THE WEBSITE?
>> AS FUNDERS IT'S SOMETHING WE
WANT TO KEEP OUR EYE ON AND
MAINTAINING POST FIVE YEARS FOR
SURE.
>> THROUGHOUT THE PRESENTATIONS
I DIDN'T HEAR MENTION ABOUT
AUTISTIC PEOPLE INFORMING THE
WORK THAT YOUR DOING.
I'M HOPING IT'S A QUESTION THAT
DOESN'T NEED TO BE ASKED AND
INCORPORATED IN EVERYTHING YOU
DO BUT I'D FEEL MORE COMFORTABLE
IN HEARING THAT OUT LOUD.
>> ARE PEOPLE WITH THE LIVED
EXPERIENCE INVOLVED IN THE WORK
YOU'RE DOING?
>> THE STEERING COMMITTEE THAT
GUIDES THE WORK OF THE LINK
CENTER HAS SEVERAL AUTISTIC
FOLKS REPRESENTED ON THERE AND
REPRESENTING THE AUTISTIC
COMMUNITY.
>> ANY OTHER RESPONSES?
>> ONE OF THE MESSAGES DOCS WE
HIGHLIGHT IS AN EXAMPLE FROM
CHAMPAGNE COUNTY THIS IS THE
14th YEAR THEY'VE HAD A
DISABILITY CONFERENCE DESIGN BY
THOSE WITH DISABILITIES AND ON
THE SPECTRUM DISORDER AND A HOST
OF OTHERS.
THEY DESIGN THE PROGRAM AND
BRING IN VENDORS AND STATE AND
LOCAL GOVERNMENT AND IT'S AROUND
250 PEOPLE BUT IT'S BEEN A GREAT
EVENT BUT IT'S DESIGN BY THEM
FOR THEM.
>> THANK YOU VERY MUCH.
ALICIA.
WHAT ARE YOU RESOURCES YOU HOPE
TO GENERATE AND WHAT DO YOU
INSTEAD TO DETERMINE WHETHER
THEY WORK OR DON'T WORK?
>> WE LOOK TO ELEVATE WHAT'S OUT
THERE AND ADAPT TO WHAT'S OUT
THERE.
WE'RE HOPING WE DON'T HAVE TO DO
TOO MUCH CREATION OF RESOURCES
ACKNOWLEDGING IT MAY NEED TO BE
WHAT WE DO.
WE HAVE TOPICS BECAUSE OF OUR
ENGAGEMENT WITH SAMHSA IS AROUND
CRISIS SERVICES AND SUPPORTS.
ONE THING WE NOTICED IN WHAT IS
OUT THERE IS THERE'S A LACK OF
CRISIS TEMPLATES FOR PEOPLE
IDENTIFYING WHEN THEY'RE FEELING
OKAY AS SOME FOLKS HAVE PUT IT
IN MY COMPANY WHAT DO THEY NEED
WHEN THEY'RE NOT FEELING OKAY.
WE WORKED WITH PARTNERS IN
COMMUNICATION FIRST AND FOLKS ON
THE STEERING COMMITTEE TO
DEVELOP A CRISIS PLAN DEVELOPED
BY PEOPLE WITH LIVED EXPERIENCE
BASED ON THEIR OWN UNFORTUNATELY
EXPERIENCES WITH THE CRISIS
SYSTEM.
THAT WAS BASED UPON THINGS WE
WERE SEEING LACKING IN THE FIELD
WHILE PEOPLE MAY HAVE BEEN
INVOLVED WITH RESEARCHERS AND
OTHERS THERE WAS NOTHING SOLELY
DEVELOPED BY THE COMMUNITY.
I'M NOT SURE I ANSWERED THE
WHOLE QUESTION.
SORRY.
>> MAYBE I WASN'T CLEAR.
THE TOOLS YOU'RE SHARING OR
PUTTING TOGETHER IS BASED ON
LIVED EXPERIENCES BUT HOW MANY
AND HOW WILL THEY BE IF SHARED
WITH THE BROADER COMMUNITY HOW
WILL THEY BE EXPRESSED WITH
LIVED EXPERIENCES?
>> SO THE HOW MANY WILL SORT OF
EVOLVE AS WE GO BASED UPON WHERE
WE'RE IDENTIFYING THERE'S A GAP.
WE HAVE A PRETTY STRONG VETTING
PROCESS IN VETTING RESOURCES BUT
HOW MANY WE'RE DEVELOPING WILL
BE DETERMINED AS WE SORT OF DIG
INTO THESE AS I SAID THE TOPICAL
FRAMEWORK SO CAN'T PREDICT THAT
OUT BUT WITH OUR CRISIS PLANNING
WE'VE FOCUSED ON GIVING
INDIVIDUALS AND FAMILIES TOOLS.
WHILE THERE'S SOME OUT THERE, A,
IT'S HARD TO ACCESS THEM SO
ACCESSIBILITY BEING THE ISSUE
AND TOOLS OUT THERE HAVEN'T BEEN
DEVELOPED WITH THE COMMUNITY OR
PEOPLE WITH LIVED EXPERIENCE.
SO WE'RE PROVIDING TEMPLATES
BASED ON PEOPLE'S EXPERIENCES
ALONG WITH SOME SAMPLES AS WELL.
>> MITCHELL.
>> WHERE AND TO WHAT EXTENT DOES
SUBSTANCE USE DISORDER FIT IN
YOUR WORK?
>> HOW DOES IT FIT IN THE PLANS
YOU HAVE?
>> THEY'RE CO-LOCATED WITH
MENTAL HEALTH AND MAY PROVIDE
SERVICES AND MAY ALSO ADMINISTER
MEDICARE CONTRACTING OR
OVERSIGHT OF THE PROVIDERS.
>> THANK YOU.
ANY OTHER RESPONSES?
>> YES.
I WAS GOING TO MENTION THAT WE
ACKNOWLEDGE SUBSTANCE USE BEING
A HIGH PROPORTION OF FOLKS
TALKED ABOUT WHEN WE TALK ABOUT
INDIVIDUALS WITH CO-OCCURRING
MENTAL HEALTH AND ACKNOWLEDGE
THERE'S A DEARTH OF KNOWLEDGE
AND TREATMENT OUT THERE.
WE HAVE BEEN CLOSELY PARTNERING
WITH OUR COLLEAGUES AT THE
NATIONAL ASSOCIATION OF HEAD
INJURY ADMINISTRATORS AND
THEY'VE BEEN DIGGING INTO THIS A
LITTLE MORE THAN WE HAVE AND
SOMETHING WE'VE IDENTIFIED WE
WANT TO SPECIFICALLY TARGET ON
THE WEBSITE.
>> THANK YOU.
SCOTT.
>> THANK YOU, DR. GORDON.
I APPRECIATE THE PRESENTATIONS
IN TERMS OF LOOKING AT SYSTEM
CHANGE MENTAL HEALTH SERVICES
AND STACY IT'S GOOD TO SEE YOU
PERSONALLY SPEAKING, I GUESS.
WE INTERACTED THINGS IN
PENNSYLVANIA AND GLAD TO SEE YOU
DOING THINGS AT THE NATIONAL
LEVEL THESE IMPORTANT TOPICS
HAVE BEEN RAISED IN THE SPACE
AND RELATED TO THE EARLIER
COMMENT IN TERMS OF AUTISTIC
PEOPLE BEING INVOLVED THERE'S
BARRIERS TO ENTRY FOR AUTISTIC
INDIVIDUALS SERVING IN THESE
ROLES.
I BELIEVE IN HAVING FOLKS ON
ADVISORY BOARDS BUT NEED TO
ENHANCE ACCESS TO THE WORKFORCE
FOR PEOPLE IN THE MENTAL HEALTH
SYSTEMS AND SHOULD SHOWED
ENHANCEMENTS IN TERMS OF
DIVERSITY OF INPUT AND
THOUGHTERS AUTISTIC -- THOUGHT
LEADERS AND BENEFIT THE SYSTEM.
CAN YOU SPEAK TO IDEAS AND
SUGGESTIONS AS FAR AS RESOURCES,
POLICY, PRACTICES AND THE HEALTH
CARE SYSTEM HOW WE CAN SUPPORT
SINCE MENTAL HEALTH AND WELL
BEING CUTS ACROSS AGENCY ROLES.
WHAT CAN WE DO IN THE GOVERNMENT
TO HELP YOU ALL BE MORE
SUCCESSFUL WITH YOUR
ACCOMPLISHMENT IN TERMS OF
INNOVATION LOOKING AT POLICIES
AND PRACTICES FOR SYSTEMS
CHANGE?
>> IF I COULD JUMP IN MY
INTERNET WENT DOWN SO I'M
CALLING IN.
CAN YOU HEAR ME?
>> YEAH, THANK YOU, DR. KLINE.
COORDINATING ACROSS THE FEDERAL
AGENCIES IS GOOD BUT WE CAN HAVE
IMPROVEMENT AND BETWEEN AGENCIES
THEY CAN CONTINUE TO WORK
TOGETHER AROUND CRISIS SERVICES
AND LOOKING AT DIVERSION FROM
CRIMINAL LEGAL SETTINGS.
AND WE'LL LOOK TO HOW TO BEST
SERVE COMPLEX POPULATION AND
REDUCE THE SILOS IN FUNDING.
>> THERE'S SOME AFFIRMATION
BECAUSE RECENTLY THERE WAS
ARTICLE AND FINDINGS SUGGESTED A
NEED FOR INTEGRATIVE MENTAL
HEALTH AND EMPLOYMENT SERVICES
AND WE OFTEN DON'T TALK ABOUT
THOSE TOGETHER AND HOW CRITICAL
EMPLOYMENT SERVICES BACK TO LISA
I BELIEVE SAID THE PURPOSE AND
MEANING AND HOW IMPORTANT THAT
IS.
AND THINKING ABOUT HOW THEY CAN
REALLY GO HAND IN HAND.
THANKS FOR THAT QUESTION.
>> THANK YOU.
WE HAVE TIME FOR ONE LAST
QUESTION.
TOM.
>> GREAT TALKS.
WE NEED TO SCREEN FOR AND
IDENTIFY MENTAL HEALTH AND
CURIOUS IF YOU'RE UNDERTAKING
BROAD BASED SCREENING APPROACHES
WHAT I'VE SEEN IN COMMUNITIES
HAVE BEEN MORE IDIOSYNCRATIC
WHEN IT'S PRESENT OR FRANKLY
MISSING CO-OCCURRING MENTAL
HEALTH CONDITIONS IN PEOPLE WITH
AUTISM.
ARE WE AWARE OF ANY BROAD BASED
ATTEMPTS.
WHAT DROVE A LOT OF THE ADVANCES
IN AUTISM WAS ACTUALLY
IMPLEMENTING SCREENING
PRACTICES.
AND WONDER.
>> WITH THE SAFER COMMUNITIES
ACT THEY ESTABLISHED TECHNICAL
ASSISTANCE CENTER AND HELP
REIMBURSEMENT WITHIN SCHOOLS.
THAT'S ONE RESOURCE.
>> I HAVE TO REMIND EVERYBODY IF
YOU DON'T KNOW LISA TOPER'S
WORK, SHE'S ALREADY CREATED
EVERYTHING YOU'RE TRYING TO
BUILD IN TERMS OF CRISIS
INTERVENTION AND INSTRUMENTS AND
MEASUREMENTS AND TOOLS.
AND I ENCOURAGE YOU TO FIND HER
IN THE MEETING.
SHE'S GOT GREAT RESOURCES.
>> THANK YOU FROM LISA IN THE
BACK FOR THOSE WHO COULDN'T HEAR
THAT.
WELL, I WANT TO THANK YOU OUR
PANELISTS BOTH THREE PANELISTS
WE JUST HEARD ON SERVICES BUT
ALSO THE PANELISTS SPEAKING FROM
COMMUNITY RESEARCH AND THERE'S
GREAT NEED FOR MENTAL HEALTH
SERVICES AND CARE FOR
INDIVIDUALS WITH AUTISM AND IT
WAS ENCOURAGING TO HEAR FIRST
ABOUT SOME OF THE EARLY RESEARCH
THAT IS SHOWING PROMISING THOUGH
EARLY RESULTS IN ADDRESSING SOME
OF THE INDIVIDUALS ON THE
SPECTRUM AND HEARD FROM SAME
RESEARCHERS FROM THE PANELISTS
WITH COMMUNITY PERSPECTIVES AND
FROM THE SERVICES PERSPECTIVE AS
WELL THAT WE NEED A LOT MORE
OPTIONS AND BETTER TREATMENTS
AND WE NEED FOCUSSING THOSE
TREATMENTS ON INDIVIDUALS AND
INCREASED ACCESSIBILITY AND
IMPLEMENTATION OF THE
EVIDENCE-BASED SERVICES.
THANK YOU VERY MUCH.
IT WAS A TREMENDOUSLY
INFORMATIVE AFTERNOON THAT WILL
INFORM WHAT WE VOTED ON THE
STRATEGIC PLAN TO PAY ATTENTION
SPECIFICALLY TO THESE ISSUES AND
I LOOK FORWARD TO WORKING WITH
YOU ALL OVER THE COMING MONTHS
AS WE REVISE THAT PLAN.
WITH THAT, I'M GOING TO TURN IT
OVER TO SUSAN TO CLOSE OUT THE
MEETING AND REMIND US ABOUT WHEN
OUR NEXT MEETING IS BUT THANK
YOU ALL FOR JOINING US TODAY
BOTH IN PERSON AND THOSE WHO
JOINED ONLINE.
>> THANK YOU INDEED FOR A
WONDERFUL AFTERNOON OF ROBUST
DISCUSSION ON MENTAL HEALTH
ISSUES WHICH HAS BEEN A HIGH
PRIORITY FOR THE COMMITTEE AND
WE APPRECIATE ALL THE INPUT AND
WE'LL BE TAKING THAT INTO
ACCOUNT AS WE PREPARE THE NEXT
VERSION OF THE STRATEGIC PLAN
UPDATES.
WITH THIS, WE WILL BE CLOSING
THIS MEETING.
THE NEXT FULL COMMITTEE MEETING
IS SCHEDULED FOR JANUARY 24,
2024, 10:00 A.M. TO 5:00 P.M.
AND WE'LL SEND OUT E-MAILS AND
IN BETWEEN I MENTIONED E-MAILS
WILL COME TO YOU REGARDING
FOLLOW-UPS IN THE COMMUNITY
BUSINESS AND I'LL SEND THOSE
OUT.
I'D LIKE TO TAKE A MOMENT TO
THANK OUR TEAM THE COORDINATION
TEAM YOU SEE IN THE ROOM IN
PERSON THANK YOU FOR THE SUPPORT
AND THE ROSE LEE AND ASSOCIATES
CONTRACTOR AND THE NIH CENTER
FOR INFORMATION TECHNOLOGY
SUPPORTING THE MEETING.
THANK YOU SO MUCH AND WE'LL SEE
YOU NEXT TIME.