WELCOME TO THIS MEETING OF THE
INTERAGENCY AUTISM COORDINATING
COMMITTEE STRATEGIC PLAN WORKING
GROUP.
WE'RE WELCOMING YOU BACK FOR A
SECOND DAY OF THIS MEETING.
WELCOME TO OUR ONLINE AUDIENCE,
WHO MAY BE VIEWING THROUGH NIH
VIDEOCAST, AND TO MEMBERS OF THE
COMMITTEE AND ALTERNATES WHO ARE
SERVING WITH THE COMMITTEE
TODAY.
WE WENT THROUGH A LIST OF PEOPLE
WHO WERE PRESENT YESTERDAY.
WE'RE NOT GOING TO DO THAT AGAIN
TODAY, BUT THE SLIDE SET WILL BE
POSTED THAT WILL SHOW THAT, AND
YOU WILL SEE PEOPLE AS THEY COME
IN AND OUT, AS THEY COMMENT ON
VARIOUS DISCUSSION TOPICS TODAY.
SO IN TERMS OF THE HOUSEKEEPING
ITEMS, AGAIN, AS A REMINDER, IN
CASE THERE'S ANYBODY HERE WHO
WASN'T HERE YESTERDAY, WE WILL
HAVE A PERSON WHO IS DESIGNATED
FROM OUR OFFICE, STEVEN ISAAC
ISAACSON, WHO WILL BE ABLE TO
READ COMMENTS FOR ANYBODY WHO
WANTS TO SUBMIT THEIR COMMENTS
IN WRITING, AND HE HAS HIS NAME
LABELED AS "SEND COMMENTS HERE"
IN THE ZOOM CHAT SO YOU CAN SEND
YOUR COMMENTS TO HIM AND HE'LL
BE HAPPY TO READ THEM AND
EVERYONE, YOU CAN KEEP YOUR
CAMERAS OFF UNLESS YOU'RE
SPEAKING, AND IF YOU WANT TO
SPEAK AND YOU DON'T WANT TO TURN
YOUR CAMERA ON, THAT'S FINE TOO.
WE DON'T WANT ANYBODY TO GET
CAMERA FATIGUE.
AND WE WILL BE GOING THROUGH
TODAY'S MEETING AGENDA.
I PUBLISHED A NEW MEETING AGENDA
THAT IS ONLINE ON THE IACC
WEBSITE TO ADJUST FOR SOME
THINGS THAT WE CHANGED AS OF THE
MEETING YESTERDAY.
SO WANTED TO MAKE SURE THAT THAT
IS ALL WORKED OUT.
AND I WORKED IN JUST ONE BREAK
FOR TODAY BECAUSE YESTERDAY IT
SEEMED LIKE ONE BREAK WAS ENOUGH
SO IF YOU WANT TO FOLLOW ALONG
WITH THE AGENDA, CHECK THE LINK
ON THE IACC WEBSITE FOR THIS
MEETING.
BUT AGAIN, I'LL GO OVER A RECAP
OF YESTERDAY'S MEETING.
SO WE HAD A GREAT MEETING
YESTERDAY, LOTS OF WONDERFUL
FEEDBACK SHARED BY OUR MEMBERS
ABOUT DIFFERENT SECTIONS OF THE
STRATEGIC PLAN.
SO WE WENT OVER QUESTIONS ONE,
TWO, THREE AND FOUR OF THE IACC
STRATEGIC PLAN AND OUT OF THE
SEVEN QUESTION AREAS PLUS THERE
ARE SOME OTHER AREAS WE'RE GOING
TO TALK ABOUT TODAY.
WE DISCUSSED THE PURPOSE OF THE
IACC STRATEGIC PLAN, WE REVIEWED
THE PROCESS AND THE TIMELINE,
AND WE DID COLLECT THAT FEEDBACK
FROM YOU ALL, WHICH WAS SO
HELPFUL.
SO TODAY, WHAT HAS CHANGED ON
THE AGENDA IS WE'RE GOING TO GO
THROUGH QUESTIONS 5, 6 AND 7,
AND THEN WITH THE CROSS-CUTTING
OBJECTIVES, SEX/GENDER AND
DISPARITIES, WE'VE ADDED MORE
TIME TO BE ABLE TO TALK ABOUT
THOSE IN A LITTLE MORE DETAIL,
AND WE HAVE COVID-19, AND THEN
WE WILL CLOSE OUT TODAY'S
MEETING.
SO WITH THAT, I'M READY TO JUMP
RIGHT INTO QUESTION 5, UNLESS
THERE ARE ANY QUESTIONS FROM THE
COMMITTEE.
ALL RIGHT.
SO WE'RE GOING TO START WITH
QUESTION 5, WHICH IS ON SERVICES
AND SUPPORTS.
SO THE PROPOSED QUESTION 5 TEXT
IS, WHAT SERVICES AND SUPPORTS
ARE NEEDED TO MAXIMIZE HEALTH
AND WELL-BEING?
AND WE CHANGED THAT OVER FROM
QUALITY OF LIFE, BECAUSE WE
HEARD YESTERDAY THAT THAT WOULD
MAYBE BE A BETTER WAY TO WORD
THAT.
SO THAT IS HOW WE HAVE IT NOW,
BUT YOU'LL ALSO HAVE AN
OPPORTUNITY ON THE SURVEY AFTER
THE MEETING IF YOU HAVE ANY
OTHER SUGGESTIONS ABOUT THE
WORDING OF THE QUESTION.
BUT WE'RE TRYING TO KEEP THEM
SHORT AND READABLE.
SO THE TOPICS INCLUDE EDUCATION,
HEALTHCARE, CHILD SAFETY,
INCLUDING ISSUES LIKE WANDERING,
AND WE CAN ALSO ADD SOMETHING
ABOUT WATER SAFETY AS I KNOW
THAT'S AN ISSUE CONGRESS IS
INTERESTED IN, AND I KNOW SCOTT
ROBERTSON AND SOME OTHERS ON THE
COMMITTEE HAVE MENTIONED THIS
BEFORE AS WELL.
SYSTEMS NAVIGATION, ENSURING
INDIVIDUALIZATION, CHOICE,
PERSON-CENTERED PLANNING AND
SELF-DIRECTION.
CAREGIVER AND FAMILY SUPPORTS.
OUTCOMES, QUALITY OF SERVICES
AND SERVICES NEEDS.
THE TRAINING AND DEVELOPMENT OF
THE SERVICES WORKFORCE.
AND COORDINATION OF SERVICES.
SO THAT'S A GENERAL OVERVIEW OF
WHAT'S IN QUESTION 5.
AND SO I'M GOING TO ASK THE SAME
DISCUSSION QUESTIONS I'VE BEEN
USING THROUGHOUT THIS MEETING,
THROUGHOUT THE MEETING
YESTERDAY, AND WE'LL USE THEM
TODAY.
ARE THERE ANY OTHER IMPORTANT
TOPICS OR POINTS THAT WE NEED TO
INCLUDE IN QUESTION 5?
AND HAVE THERE BEEN ANY
SIGNIFICANT RECENT CHANGES,
WHETHER IT'S IN POLICY, IN
RESEARCH OR SERVICES, THAT COULD
IMPACT THE DIRECTION THAT WE
WANT THE STRATEGIC PLAN TO TAKE
IN THIS AREA.
SO I HAVE A QUESTION OR I HAVE A
COMMENT FROM IVANOVA SMITH.
>> HELLO, THIS IS IVANOVA SMITH.
MY COMMENT IS, I THINK WE SHOULD
ADD TRANSITION TO ADULTHOOD,
BECAUSE IT DEFINITELY SUPPORTS
THE SERVICES THAT ARE NEEDED TO
TRANSITION TO ADULTHOOD AND
HELPING A PERSON BE SUPPORTED IN
DOING ADULT ACTIVITIES.
THANK YOU.
>> THANK YOU IVANOVA.
TRANSITION TO ADULTHOOD IS
ACTUALLY THE FIRST ITEM IN
QUESTION 6, WHICH IS ALL ABOUT
ADULTHOOD AND SERVING THROUGHOUT
THE LIFESPAN.
>> OH, I'M SORRY.
>> THAT'S NOT A PROBLEM AT ALL.
SO WE WILL DEFINITELY COVER THAT
IN QUESTION 6.
VERY IMPORTANT TOPIC.
JULIE LA TAYLOR.
>> IF WE WANT TO PUT THAT IN
QUESTION 5 OR A PIECE OF THAT, I
THINK SORT OF THE CONTINUITY OF
SERVICES BETWEEN SORT OF
SCHOOL-BASED SERVICES AND ADULT
SERVICES IS A REAL CHALLENGE,
AND MAYBE THAT FITS BEST IN ONLY
QUESTION 6, BUT IT KIND OF IS
ALMOST A -- COORDINATION OF
SERVICES PIECE TO WORK TOWARD
BETTER CONTINUITY THERE THAN
WHAT WE TYPICALLY SEE.
>> OKAY.
THANK YOU.
JALYNN DA, DID YOU HAVE A
COMMENT?
I SAW YOU TURN ON YOUR CAMERA.
>> YES.
THERE'S SOMETHING WE HIT ON A
LITTLE BIT YESTERDAY ABOUT THE
NUMBER OF PEOPLE THAT ARE BEING
DIAGNOSED AS ADULTS.
AND HOW DO WE PUT THAT IN HERE
AND MAYBE IN TWO PLACES?
BECAUSE THE THING I KEEP HEARING
IS, NOW THAT I HAVE A DIAGNOSIS
AND I KNOW THAT I NEED SOME
ASSISTANCE, HOW DO I GET THAT IF
I'VE NOT BEEN ABLE TO HOLD A JOB
BECAUSE OF SOME OF THE THINGS
I'VE DISCOVERED ABOUT MYSELF
THAT HAS KEPT ME FROM
EMPLOYMENT, HOW DO I ACCESS
THOSE THINGS SO I CAN BE MORE
PRODUCTIVE, SO I CAN LEARN MORE
ABOUT MYSELF?
AND THE TERM YESTERDAY, TALKING
ABOUT THINGS YESTERDAY ABOUT
SERVICES FOR ADULTS, SOMEBODY --
SUPPORT NEEDS DOESN'T MEAN NO
SUPPORT NEEDS, AND I THINK
THAT'S SOMETHING WE NEED TO TAKE
INTO CONSIDERATION VERY
SERIOUSLY, IN LOOKING AT WHAT
THOSE SERVICES AND SUPPORTS ARE.
WHETHER IT COMES IN NUMBER 5 OR
IT COMES IN NUMBER 6 OR BOTH.
>> THANK YOU.
SO WITH ADULT SERVICES RELATED
TO DIAGNOSIS AND POST DIAGNOSIS,
WE TO HAVE THAT IN QUESTION 6,
BUT SOMETHING THAT YOU JUST
MENTIONED ABOUT DESCRIBING THE
RANGE OF WHAT CAN BE COVERED
WITH HIGH SUPPORT NEEDS VERSUS
LOW SUPPORT NEEDS, YOU KNOW,
WHICH NONE OF THIS TERMINOLOGY
IS PERFECT, BUT WE DEFINITELY
RECOGNIZED FROM PREVIOUS
DISCUSSIONS WITH THE COMMITTEE
THAT INTELLECTUAL DISABILITY
LANGUAGE AND COMMUNICATION
DISABILITIES ARE ONE FORM, BUT
THERE ARE MENTAL HEALTH
CO-OCCURRING CONDITIONS AND
OTHER KINDS OF CONDITIONS AND
DISABILITIES THAT CAN LEAD TO
HAVING HIGHER SUPPORT NEEDS.
IT'S NOT JUST ONE SPECIFIC
DEFINITION.
SO I THINK QUESTION 5 MIGHT BE A
GOOD PLACE TO DESCRIBE THAT AS A
PREAMBLE TO GOING INTO WHAT THE
DIFFERENT SUPPORTS ARE.
SO WE CAN TRY TO DO THAT.
>> THANK YOU.
>> SAM?
CRANE?
>> HI, EVERYONE.
THIS IS SORT OF A -- IT SOUNDS
LIKE A MINOR POINT BUT I JUST
WANT TO BE CAREFUL ON A BIT.
RIGHT NOW WE HAVE ON PAGE 4 A
STATEMENT THAT INDIVIDUALS WITH
ASD ARE AT INCREASED RISK FOR
DROWNING, AND I CHECKED THE SITE
FOR IT, I'M NOT SURE THAT IT
NECESSARILY SAYS WHAT WE'RE --
YOU KNOW, THAT ACTUALLY SUPPORTS
THAT STATEMENT.
I'M NOT AWARE OF ANY REALLY,
REALLY GOOD EVIDENCE, GIVEN THAT
DROWNING IS, I BELIEVE, FOR SOME
AGE GROUPS, THE NUMBER ONE CAUSE
OF UNINTENTIONAL DEATH IN
CHILDREN OVERALL.
YOU KNOW, FREQUENTLY IF WE SEE
FREQUENT DROWNING DEATH IN KIDS
WITH ASD, THAT'S CONSISTENT WITH
THE FACT THAT WE SEE FREQUENT
DROWNING DEATHS IN ALL CHILDREN.
SO I THINK THAT WE COULD SAFELY
SAY THAT, YOU KNOW, THERE IS
CONCERN THAT DROWNING IS A
COMMON CAUSE OF DEATH IN KIDS
WHO WANDER, BUT NOT NECESSARILY
THAT IT LIKE IT'S UNUSUALLY
COMMON FOR KIDS WITH ASD.
IN ADDITION, I THINK I'M
SKEPTICAL OF CITING THE NIA
BECAUSE I'VE HAD SIMILAR
CONCERNS ABOUT THEIR RESEARCH,
WHICH GENERALLY IS VERY FOCUSED
ON REVIEWING NEWS ARTICLES AND
SORT OF ANECDOTAL REPORTS ON
SAFETY ISSUES THAT HAVEN'T --
AREN'T WHAT I WOULD CONSIDER
PARTICULARLY EPIDEMIOLOGICALLY
SOUND.
I THINK IT IT ACTUALLY HIGHLIGHA
REALLY PRESSING NEED FOR
RIGOROUS EPIDEMIOLOGICAL
RESEARCH ON ACCIDENTAL AND
DROWNING DEATHS IN KIDS WITH
ASD, BECAUSE WE REALLY JUST
DON'T ACTUALLY HAVE VERY GOOD
RESEARCH ON THAT AT ALL.
>> THANK YOU.
I DON'T KNOW IF WE HAVE ANYONE
FROM DEPARTMENT OF JUSTICE ON
THE CALL TODAY.
DO WE HAVE ANYBODY FROM DOJ?
I KNOW IN SPEAKING WITH DOJ THAT
THERE'S A HIGH PROPORTION OF
WANDERING CASES AND IN
ACCIDENTAL DEATH THROUGH
DROWNING, AND THAT MIGHT BE PART
OF WHAT THE WATER SAFETY CONCERN
IS, BUT WE CAN LOOK AT
REFERENCES.
I KNOW THAT DOJ HAS A REPORT BUT
I DON'T KNOW IF IT'S A PUBLIC
REPORT ABOUT THAT, BUT I CAN
CHECK IN WITH OUR CONTACTS
THERE.
>> I THINK IT WOULD BE SAFE TO
SAY THAT OF WANDERING DEATHS,
DROWNING IS A VERY COMMON ONE.
I THINK THAT WOULD BE A VERY
SAFE THING TO SAY.
I JUST DON'T KNOW IF THERE IS
NECESSARILY EVIDENCE THAT KIDS
WITH ASD COMPARED WITH KIDS WHO
DON'T HAVE ASD ARE MORE LIKELY
TO DIE BY DROWNING BECAUSE IT'S
SUCH A -- I CAN GO ON ABOUT
THIS, BUT DROWNING IS JUST A
REALLY, REALLY COMMON CAUSE OF
DEATH IN CHILDREN.
ACROSS THE
COUNTRY.
SO I THINK THAT THAT'S ONE OF MY
CONCERNS, AND I THINK THAT IT'S
IMPORTANT THAT WE DO SOME REALLY
GOOD RESEARCH ON -- THAT
ACTUALLY LIKE COMPARES APPLES
FOR APPLES, KIDS WITH ASD VERSUS
KIDS WITHOUT ASD BECAUSE I
HAVEN'T SEEN A GOOD COMPARISON.
>> DOJ, I DON'T KNOW IF THEY
HAVE ANYTHING THEY'LL BE
PUBLISHING FORMALLY OR CAN CITE
ANY DATA, I KNOW THEY HAVE SOME
BECAUSE THEY'VE SHOWN TO ME, SO
WE CAN LOOK INTO THAT FURTHER,
BUT APPRECIATE THAT COMMENT.
SCOTT, DO YOU HAVE SOME
ADDITIONAL COMMENTS?
>> YEAH, THANKS, SUSAN.
SO I CONCUR THAT FOR THAT AREA
AS FAR AS WATER SAFETY AND SOME
OTHER AREAS, THAT IT'S HELPFUL
TO HAVE HIGHER QUALITY EVIDENCE
AND STATISTICAL SIGNIFICANCE ON
THESE THINGS BECAUSE SOMETIMES
ASSERTIONS ARE MADE IN SOME OF
THESE AREAS ARE AUTISM BASED ON
SMALLER SAMPLE SIZES OR EVIDENCE
THAT MAY NOT BE GENERALIZABLE,
AND IT GOOD TO HAVE SCRUTINY IN
TERMS OF THINKING REALLY
CRITICALLY ABOUT WHAT EVIDENCE
IS PRESENTED BY EITHER JOURNAL
ARTICLES OR REPORTS OUT IN THAT
SPACE.
I JUST WANT TO ADD ON THE WATER
SAFETY BEFORE I JUST HAD A FEW
OTHER ONES JUST TO MENTION
BRIEFLY.
THE WATER SAFETY IS EQUAL ACCESS
TO SWIMMING SKILLS TOO IS
SOMETHING THAT IS COMPLETELY
UNDERSTUDIED IN RESEARCH AS FAR
AS SUPPORTS AND SERVICES.
I GREW UP ON A LAKE.
MY PARENTS STILL ARE ON IT SO I
LEARNED SWIMMING SKILLS READILY
YOUNG AND USED TO SOMETIMES GO
TO THE OCEAN, ET CETERA, FROM
THE JERSEY SHORE, BUT A LOT OF
THE FOLKS WHO ARE AUTISTIC LACK
FULL ACCESS, EQUAL ACCESS TO
INSTRUCTION IN SWIMMING SKILLS,
WATER SAFETY, ET CETERA.
WHICH I THINK PARALLELS SOME
OTHER DIVERSE UNDERREPRESENTED
POPULATION GROUPS WHERE THERE'S
MARGINALIZATION, INCLUDING, FOR
INSTANCE, BLACK AMERICANS HAVE
HISTORICALLY BEEN VERY
MARGINALIZED IN TERMS OF FULL
EQUAL ACCESS TO SWIMMING SAFETY
AND EQUAL ACCESS TO POOLS, ET
CETERA, OVER TIME, ALONG WITH
OTHER AREAS IN TERMS OF
DISCRIMINATION THAT HAS HAPPENED
HISTORICALLY HERE IN THE UNITED
STATES.
AND YOU KNOW, I THINK IT'S
SOMETHING THAT IF WE'RE GOING TO
HAVE WATER SAFETY IN HERE, THAT
THE SWIMMING INSTRUCTION IS
REALLY HELPFUL TO HAVE.
A FEW OTHER THINGS THAT I WANTED
TO ADD ON HERE, THE
TRANSPORTATION SECTION SHOULD
HAVE A LITTLE BIT MORE ON TRAVEL
TRAINING FOR CHILDREN AND YOUTH
WHO ARE AUTISTIC AS FAR AS
LEARNING TO USE TRANSPORTATION
SYSTEMS, AND THAT VARIOUS FOLKS
HAVE AS FAR AS ADOLESCENCE IN
LEARNING TO OBTAIN A DRIVER'S
LICENSE AND HOW TO ACCESS PUBLIC
TRANSPORTATION.
THERE'S SOME STUDIES I CAN SEND
YOU THAT YOU COULD SA CITE QUICY
IN THERE AND EASILY AND ALSO A
REPORT FROM NEW JERSEY THAT'S
VERY EXTENSIVE ON THIS SPACE
THAT WAS PUBLISHED OUT OF
RUTGERS UNIVERSITY.
I FEEL LIKE I SHOULD COVER
TRANSPORTATION ESPECIALLY SINCE
DOT DOES NOT THAT TO NOT HAPN
THIS COMMITTEE, BECAUSE THAT'S A
MAJOR FOCUS AS FAR AS HERE IN
THIS SPACE.
AND THEN JUST A COUPLE OTHER
THINGS THAT I WANTED TO CALL OUT
WAS THE HOUSING AREA ON HERE
DOES NOT MENTION THE HIGH RATE
OF HOMELESSNESS THAT HAS BEEN
FOUND BY RESEARCH OUT IN THE
UNITED KINGDOM, AND ACROSS
EUROPE, BUT WE NEED MORE
RESEARCH ON THAT HOMELESSNESS
FOCUS HERE IN THE UNITED STATES.
IT'S A MAJOR GAP AS FAR AS THAT
HOUSING, AND IT SEEMS LIKE
THERE'S A REALLY HIGH RATE OF
HOMELESSNESS AMONG AUTISTIC
PEOPLE, BUT WE NEED A LOT MORE
RESEARCH IN THAT SPACE ON
HOUSING ACCESS AND VARIOUS
FOLKS' EXPERIENCES AND HOW THAT
RELATES BACK TO QUALITY OF LIFE.
AND THEN JUST A COUPLE OTHER
THINGS THAT I WANTED TO
HIGHLIGHT WERE THE EDUCATION
SYSTEM, THAT FULL CONTINUUM OF
ACCESS FOR EDUCATION THAT HELPS
FOLKS DEVELOP THEIR SKILLS AND
TALENTS THROUGH EDUCATION IN
K-12 AND THEN THE
CROSS-CONNECTION ON THAT FOR
TRANSITIONING OVER TO HIGHER
EDUCATION AND POST SECONDARY
EDUCATION AND TRAINING, THAT A
LOT OF FOLKS DON'T HAVE EQUAL
ACCESS INCLUDING ESPECIALLY
AUTISTIC PEOPLE, OTHER FOLKS
WITH DISABILITIES TO EDUCATION
ACROSS THE BOARD AS THEY'RE
GROWING UP, AND HAVING RECEIVED
ACCOMMODATIONS, SUPPORTS THEY
NEED TO BE SUCCESSFUL IN SCHOOL,
AGAIN IN K-12 AND BEYOND, AND
HAVING FULL TRANSITION SUPPORTS
THAT ARE CONSISTENTLY ABLE TO
EMPOWER FOEMPOWER FOLKS TO HAVEL
ACCESS TO EDUCATION.
THE OTHER ELEMENT I WANTED TO
TOUCH UPON WAS INCLUDING HERE IN
THE EDUCATION SYSTEM, THE
WORKFORCE TRAINING AND OTHER
AREAS, THAT THERE SHOULD BE
PARTNERSHIPS OF AUTISTIC PEOPLE
ON EDUCATING SERVICE PROVIDERS
ABOUT AUTISM, THE LIVED
EXPERIENCE, PROMISING PRACTICES.
I THINK IT SHOULD BE WEAVED INTO
HERE THROUGHOUT THIS SECTION AND
OTHER ASPECTS OF THE STRATEGIC
PLAN, IS THAT PARTNERSHIP
COLLABORATION WITH AUTISTIC
PEOPLE.
IT'S VERY UNDEREMPHASIZED IN
RESEARCH, AND PRACTICE, AND THIS
FITS INTO THE OTHER AREAS WE
TOUCHED UPON, FOR INSTANCE,
YESTERDAY LIKE PEER SUPPORTS,
WHERE THAT COLLABORATION WITH
AUTISTIC PEOPLE IS IMMENSELY
IMPORTANT, AND HAVING TRAINING
FOR AUTISTIC PEOPLE TO HELP
EMPOWER YOU A TUS TICK PEOPLE
AND FAMILIES AND TO ACCESS
SUPPORTS AND SERVICES IN THAT
SYSTEMS NAVIGATION PIECE THAT
WAS ALSO MENTIONED YESTERDAY AS
FAR AS ACCESS TO SUPPORTS AND
SERVICES.
>> THANK YOU SO MUCH, SCOTT, FOR
THOSE COMMENTS.
AND WE WILL TAKE THOSE DOWN.
ON HOMELESSNESS, WE DID TALK
ABOUT HOMELESSNESS AT OUR LAST
IACC MEETING AND THAT IS INDEED
ON THE FEDERAL AGENDA AND WE
WILL WANT TO MAKE MENTION OF
THAT IN THE STRATEGIC PLAN.
SO APPRECIATE HEARING ABOUT
THAT.
I SAW ALYCIA HALLADAY, YOU HAD A
REFERENCE TO SHARE.
DO YOU MIND JUST HOPPING ON AND
MENTIONING WHAT THAT IS?
>> HI, EVERYBODY.
SORRY, I SENT TO SUSAN FOR POINT
OF CLARIFICATION, BUT IN FACT,
THERE ARE A NUMBER OF
EPIDEMIOLOGICAL STUDIES USING
DIFFERENT DESIGNS THAT SHOW THAT
DROWNING IS AT AN INCREASED RISK
FOR KIDS.
THE STUDY WAS IN CHILDREN, OR
THE STUDIES HAVE BEEN IN
CHILDREN, BUT THERE IS EVIDENCE
TO SAY THAT DROWNING IS ONE OF
THE LEADING CAUSES OF DEATH.
SOME STUDIES ARE SHOWING THAT
EPILEPSY HAS A HIGHER MORTALITY
RATE THAN DROWNING, BUT YOU
KNOW, I THINK THAT THERE IS
SCIENTIFIC EVIDENCE FOR US TO BE
VERY, VERY CONCERNED ABOUT
DROWNING.
AND I WON'T PRETEND TO KNOW
WHAT, IN FACT, THE SOLUTION
SHOULD BE, WHETHER IT'S SWIMMING
LESSONS, WHETHER IT'S, YOU KNOW,
KIDS WEARING THESE WATER --
THESE THINGS THAT TELL WHETHER
THEY'RE IN CONTACT WITH WATER,
THERE ARE SOME OF THESE WATER
BRACELETS, MECHANISMS TO -- I
THINK MECHANISMS TO ALLEVIATE
WANDERING ARE A HIGH, HIGH
PRIORITY, BUT I WANTED TO SEND
SOME OF THAT EVIDENCE TO SUSAN
JUST FOR HER INFORMATION.
>> I APPRECIATE THAT.
ALYCIA, IF YOU WOULDN'T MIND TO
BE SENDING TO IACC TEAM TO MAKE
SURE IT DOESN'T GET LOST IN THE
CHAT, I'D LOVE TO HAVE THOSE
REFERENCES.
>> OKAY.
SHOULD I EMAIL THEM OR SEND THEM
TO --
>> MM-HMM.
>> OKAY.
>> IF YOU COULD JUST EMAIL THEM,
THAT WOULD BE GREAT.
OR IF YOU PUT THEM IN THE CHAT
TO EVERYBODY, THEN OUR TEAM CAN
JUST GRAB THEM OFF THE CHAT.
>> I'LL JUST EMAIL THEM TO SAVE
TIME.
>> ALL RIGHT.
THANK YOU.
ALL RIGHT.
I'M GOING TO GO TO STEVEN FOR
WRITTEN COMMENT.
>> GOOD AFTERNOON, EVERYONE.
NICOLE WILLIAMS SEPTEMBE SENT MA
COMMENT ASKING, DO WE NEED TO
SPECIFICALLY MENTION THE
TRAINING OF FIRST RESPONDERS
WHEN WE SPEAK ABOUT TRAINING AND
DEVELOPMENT ON THE SECOND TO
LAST BULLET?
>> THAT IS A GREAT COMMENT.
WE CAN CERTAINLY MAKE SURE THAT
WE PULL OUT TRAINING OF FIRST
RESPONDERS.
THERE IS SOMETHING MORE ABOUT
THAT IN QUESTION 6, ESPECIALLY
WITH REGARD TO, SAY, LAW
ENFORCEMENT, BUT I THINK THAT
WOULD BE APPROPRIATE TO PUT IN
HERE TOO.
>> THANKS, SUSAN.
I JUST WASN'T SURE, ESPECIALLY
IF THE DOJ IS NOT HERE, I DIDN'T
KNOW WHETHER IT WOULD FIT WITH
QUESTION 5 OR 6, SO I JUST
THOUGHT I'D BRING IT UP NOW.
>> I APPRECIATE THAT.
THANK YOU TO YOU AND SCOTT BOTH
FOR TRYING TO STEP IN FOR
AGENCIES THAT MIGHT NOT BE
REPRESENTED HERE TODAY.
AND TRANSPORTATION IS ON THE
FEDERAL INTERAGENCY WORK GROUP
FOR AUTISM BUT THEY'RE NOT ON
THE COMMITTEE, SO THARNTION
STHANKS, SCOTT,FOR REPRESENTING.
IVANOVA SMITH, DO YOU HAVE
ANOTHER COMMENT?
>> HELLO, THIS IS IVANOVA SMITH.
I JUST WANT TO COMMENT ABOUT
WANDERING.
I THINK THAT'S REALLY IMPORTANT
THAT AUTISTIC CHILDREN GET
SUPPORT IN THEIR EXPLORATION,
AND IS THERE A WAY WE CAN HAVE
SERVICE PROVIDERS TO HAVE
PARTNERSHIPS WITH, LIKE, HIKING
GROUPS AND DIFFERENT GROUPS THAT
ALLOWS PEOPLE TO GO ON LONG
WALKS AND HELPING PROVIDE
SUPPORT AUTISTIC PEOPLE IN
EXPLORING THE ENVIRONMENT.
AND I ALSO REALLY WANT TO
EMPHASIZE THE IMPORTANCE OF
SWIMMING LESSONS.
IT'S REALLY IMPORTANT THAT
AUTISTIC PEOPLE GET PRACTICE
SWIMMING, BECAUSE YOU KNOW, FINE
MOTOR SKILLS, THEY HAVE PROBLEMS
WITH MOTOR PLANNING, GET
SWIMMING LESSONS AS SOON AS
POSSIBLE AND IT PROBABLY SHOULD
BE PART OF THE EARLY
INTERVENTION STRATEGIES, IF THEY
CAN SHOW THAT AUTISTIC CHILDREN
OR ANY CHILDREN THAT NEED EXTRA
SUPPORTS GET SWIMMING LESSONS.
AS PART OF THE EARLY
INTERVENTION PROGRAMS.
>> THANK YOU.
AND YES, WE ALSO CAN BE THINKING
ABOUT PHYSICAL ACTIVITY AS A
HEALTH PROMOTION ACTIVITY AS
WELL, AND NOT JUST THE SAFETY
SIDE.
SO THAT'S ANOTHER THING WE CAN
PROBABLY PUT IN.
DENA.
>> GOOD AFTERNOON, EVERYBODY.
I APOLOGIZE FOR JUMPING ON LATE
AND IF THESE THINGS HAVE BEEN
ADDRESSED, JUST DISMISS IT.
BUT IN TERMS OF HEALTHCARE, AND
I DON'T KNOW, MAYBE UNDER MENTAL
HEALTH, THERE'S A SLIDE
SOMEWHERE ELSE, BUT SUICIDE
PREVENTION SERVICES,
ACCOMMODATED SUICIDE PREVENTION
SERVICES ARE NOT NOTED HERE.
ALSO WORKFORCE TRAINING ON
HEALTHCARE DELIVERY IS REALLY
IMPORTANT FROM THE ER SYSTEM TO
ANY OTHER MEDICAL SYSTEM WE HAVE
TO 1/ NAVIGATE.
IN TERMS OF SUPPORTS AND
SERVICES, THE BARRIERS WE FACE
IN NAVIGATING SOCIAL SECURITY
ARE SIGNIFICANT.
I MEAN, INDIVIDUALS ON SSI ARE
MAKING FAR BELOW THE FEDERAL
POVERTY LEVEL, AND HOUSING IN
NEW YORK IS AVERAGED -- THIS WAS
IN THE "NEW YORK TIMES," AT
$5,000 A MONTH NOW IN NEW YORK
CITY.
AND A LOT OF PEOPLE WHO ARE
DISABLED IN NEW YORK TRY TO LIVE
IN THE CITY BECAUSE OF THE
ACCESS TO TRANSPORTATION, BUT
CLEARLY, YOU KNOW, THINGS ARE
NOT EQUITABLE IN TERMS OF THAT
NEED FOR A LIVING WAGE, WE HAVE
ISSUES WITH THE MARRIAGE
PENALTY, LIMITING THE AMOUNT OF
MONEY A COUPLE CAN HAVE.
SO I MEAN, I THINK PEOPLE HAVING
SOMETHING THAT LOOKS CLOSER TO A
LIVING WAGE IS CRITICAL BECAUSE
POVERTY IS ANOTHER FORM OF
TRAUMA, RIGHT?
AND WE JUST TALKED ABOUT PEOPLE
WHO ARE WITHOUT HOUSING.
SO IT'S NOT JUST LIMITED TO
THAT.
PEOPLE WHO ARE TRYING TO LIVE ON
$800 A MONTH ARE, YOU KNOW --
AND THEN THE PENALTIES FOR
INADVERTENTLY OVERSTEPPING IN
THOSE SYSTEMS ARE REALLY
ABUSIVE.
AND I ALSO DON'T SEE ANYTHING
HERE THAT OFFERS AN OPTION FOR
ADULTS OTHER THAN EMPLOYMENT.
WE HAVE THIS MYSTICAL THINKING
THAT IF SOMEONE HAS A JOB.
THAT THAT WILL SOLVE ALL THE
ISSUES.
WE SEE THE RATES OF UNEMPLOYMENT
IN OUR POPULATION, AND WHILE
AGAIN PART OF THAT IS BECAUSE OF
SERVICE DEFICITS, PART OF IT IS
DUE TO WORKPLACE DISCRIMINATION,
PART OF IT IS THAT NOT ALL
AUTISTIC PEOPLE CAN WORK FULL
TIME.
AND NOT HAVING SOMETHING IN
BETWEEN, SOMETHING WHERE PEOPLE
CAN GO TO QUALITY RECREATIONAL
PROGRAMS OR DAY PROGRAMS OR
VOLUNTEERISM WITH SUPPORT, TO
STILL HAVE A FULL AND ENRICHING
LIFE IS REALLY A HUGE GAP IN
TERMS OF SERVICE DELIVERY.
SO I JUST WANTED TO ADD THOSE
THINGS THERE.
OKAY, WAIT A MINUTE.
OKAY, I'M GOING TO WAIT FOR
DISPARITIES LATER.
THANKS.
>> OKAY, THANKS.
YES, AND SOME OF THOSE ISSUES
ARE IN QUESTION 6.
I KNOW IT'S A LITTLE CONFUSING
FOR THE WAY THE PLAN
HISTORICALLY WAS SET UP.
THERE WAS A QUESTION 51ST, AND
THEN QUESTION 6 CAME A YEAR
LATER, BECAUSE THEY WANTED TO
PULL OUT MORE ABOUT ADULTHOOD,
AND WE'VE KEPT THAT STRUCTURE
OVER THE YEARS.
SO SOME OF THESE ISSUES ARE IN
QUESTION 6, BUT THESE ARE
HELPFUL COMMENTS SO I APPRECIATE
THAT.
THANK YOU, DENA.
>> THANK YOU.
>> SAM.
>> THIS IS JUST A VERY SHORT
COMMENT BUT I WOULD REALLY LIKE
IVANOVA'S RECOMMENDATION ABOUT
OUTDOOR PROGRAMS AND IT REMINDED
ME OF NON-AUTISM-SPECIFIC
RESEARCH SAYING THAT WHEN
CHILDREN HAVE -- I BELIEVE THE
TERM THAT THEY OFTEN USE IS
RISKY, YOU KNOW, RISKY
ACTIVITIES VERSUS DANGEROUS
ACTIVITIES, RISKIER PLAYGROUNDS,
RISKWHERE KIDS CAN EXPLORE THE
BOUNDARY BETWEEN SAFETY AND
RISK, THEY ARE ACTUALLY FAR LESS
LIKELY T DIE FROM ACCIDENTAL
INJURY.
SO I THINK THAT THAT WOULD BE A
REALLY FRUITFUL AREA TO EXPLORE,
IS THE EXTENT TO WHICH THAT
PRINCIPLE PLAYS OUT AMONG
AUTISTIC CHILDREN, MANY OF WHOM,
I THINK, PEOPLE MIGHT UNDERVALUE
RISKY ACTIVITIES THINKING, OH,
AUTISTIC CHILDREN ARE SO MUCH --
YOU KNOW, AT SO MUCH HIGHER RISK
OF ACCIDENTAL DEATH MIGHT
PARADOXICALLY EXACERBATE THAT
RISK TO NOT OFFER SAFE
OPPORTUNITIES TO ENGAGE IN RISK.
>> THANK YOU, SAM.
I KNOW I'VE READ THAT RESEARCH
TOO.
IT WASN'T AUTISM-SPECIFIC, BUT
THAT'S A GOOD POINT.
THANK YOU FOR RAISING THAT.
SCOTT ROBERTSON.
>> YEP.
THANKS, SUSAN.
I WANTED TO CONCUR WITH WHAT SAM
JUST SHARED AS FAR AS THE
DIGNITY OF RISK PRINCIPLE AND
EQUAL ACCESS FOR AUTISTIC PEOPLE
TO HAVE THAT PARALLEL THAT
NON-AUTISTIC PEOPLE HAVE, AS FAR
AS BEING ABLE TO PURSUE
OPPORTUNITIES OF LIFE THAT FIT
FOLKS' INTERESTS AND STRENGTHS,
AND YOU KNOW, THAT MAY HAVE SOME
SLIGHT CHALLENGES AT TIMES
BECAUSE SOMETIMES FOLKS ARE SO
OVERPROTECTED BECAUSE OF BELIEFS
ABOUT -- AND THIS IS NOT JUST
SPECIFIC TO AUTISM.
THIS IS A CHALLENGE THAT WE'VE
SEEN HISTORICALLY, FOR INSTANCE,
IN DEVELOPMENT DISABILITIES MORE
BROADLY AND OTHER SIGNIFICANT
TYPES OF DISABILITIES, BUT I
DEFINITELY CONCUR THAT FOLKS
SHOULD BE ABLE TO HAVE DIFFERENT
OPPORTUNITIES TO EXPERIENCE
DIFFERENT ELEMENTS IN LIFE AND
NOT BE SEGREGATED OR SEPARATED
AWAY FROM OPPORTUNITIES TO
PURSUE IN CHILDHOOD AND
ADOLESCENCE, AND ADULT LIFE.
THAT MEANS THAT FOLKS SHOULD
ALSO HAVE THE SUPPORTS AND
ACCOMMODATIONS THEY NEED TO
MITIGATE DIFFICULTIES AND
CHALLENGES AS THEY OCCUR, SO I
THINK THERE'S THAT BALANCE POINT
KIND OF ON THAT, AND THAT'S WHAT
THE DIGNITY OF RISK PHILOSOPHY
AND DEVELOPMENT DISABILITY
COMMUNITY AND SELF DETERMINATION
FOR FOLKS WHO ARE -- WITH
DISABILITIES IN TERMS OF
CHILDREN, ADOLESCENTS AND ADULTS
IS SO IMPORTANT.
AND I ALSO WANTED TO CONCUR WITH
EMPHASIZING MORE HERE IN THE
CHAPTER ON THE COMMUNITY LIVING
ASPECT FOR CHILDREN, ADOLESCENTS
AND ADULTS.
AGAIN FOLKS ARE SOMETIMES
SEPARATED AWAY FROM HAVING THAT
FULL ACCESS, EQUAL ACCESS TO
COMMUNITY LIVING ACROSS MANY
DIFFERENT ACTIVITY, NOT JUST A
SCHOOL, NOT JUST HEALTHCARE, BUT
ALL THE OTHER ACTIVITY, LEISURE
ACTIVITIES, RECREATION, THAT
NON-AUTISTIC PEOPLE EXPERIENCE.
WE DO HAVE A DERTH OF RESEARCH
ON THAT AND A DERTH IN SOME
CASES OF PROMISING AND BEST
PRACTICES AND POLICIES ON THIS
AS FAR AS THE SUBJECT AREA, AS
FAR AS THE HUGE AREA OF
COMMUNITY LIVING AND THE EQUAL
ACCESS FOR AUTISTIC PEOPLE
THROUGHOUT ALL THESE DIFFERENT
AREAS, INCLUDING, AS I SAY,
LEISURE AND RECREATION AND
INDEPENDENT LIVING SKILL
DEVELOPMENT FOR FOLKS AND
CHILDHOOD, ADOLESCENT AND ADULT
LIFE, THAT NON-AUTISTIC PEOPLE
ARE DEVELOPING THESE SKILLS.
SOME FOLKS, BECAUSE OF BELIEFS
ABOUT AUTISM, BELIEFS ABOUT
CAPABILITY OR OTHER CONCERNS,
MAY NOT BE RECEIVING THE
SUPPORTS AND SERVICES THEY NEED,
AND THE ABILITY TO PURSUE
OPPORTUNITIES AND HAVE THAT FULL
ACCESS TO COMMUNITY LIFE THAT
THEY WANT AND FITS THEIR
INTEREST AND SKILLS AND HELPS
THEM ALSO WITH PURSUING
OPPORTUNITIES AS THEY GROW OLDER
AND AGE, AGAIN, INTO ADOLESCENCE
AND ADULT LIFE AND LATER ADULT
LIFE.
SO I DON'T KNOW -- MAYBE ACL IS
ON HERE, IF THEY WANTED TO SPEAK
MORE ON THAT COMMUNITY LIVING
ELEMENT.
>> THANK YOU, SCOTT, FOR THOSE
COMMENTS.
DO WE HAVE ANY ADDITIONAL
COMMENTS ABOUT EDUCATION LIKE
ANYTHING THAT IS AN IMPORTANT
NEED MAYBE THAT MIGHT HAVE
EMERGED IN THE LAST FEW YEARS?
I KNOW WITH COVID, OF COURSE,
THERE'S SOMETHING IN THE COVID
SECTION THAT IS ABOUT SOME
EDUCATIONAL ISSUES THAT WERE
RAISED DURING THE PANDEMIC, BUT
DENA, YOU HAVE A COMMENT?
>> JUST THE INADEQUACY OF THE
TRANSITIONAL SUPPORT SERVICES
CONTINUES TO PLAGUE OUR
POPULATION.
LACK OF MEANINGFUL POST
SECONDARY PROGRAMS.
THEY EITHER WANT THE TWICE
EXCEPTIONAL GIFTED AND TALENTED,
FORMALLY AS PROFILE STUDENTS, OR
THEY HAVE SPECIAL PROGRAMS FOR
PEOPLE WITH INTELLECTUAL
DISABILITIES, BOTH WHICH ARE
DOING WONDERFUL THINS, BUT THINT
THERE'S A HUGE ARRAY OF PEOPLE
WHO NEED MUCH MORE INTENSIVE
SUPPORT BUT ARE CAPABLE OF
ACADEMIC SERVICES, AND THERE ARE
VERY FEW PROGRAMS THAT DO THAT.
ALSO THE I INORDINATELY HIGH
WORKLOAD FOR DISABILITY SUPPORT
PERSONNEL AT ALL UNIVERSITY
SETTINGS, BUT PARTICULARLY AT
COMMUNITY COLLEGES.
MANY PARENTS SEND THEIR KIDS TO
COMMUNITY COLLEGE TO KEEP THEM
CLOSE TO HOME, NOT REALIZING HOW
MANY KIDS WITH IEPs OR
STUDENTS WHO NEEDED IEPs THAT
NEVER RECEIVED THEM ARE PART OF
THAT COMMUNITY COLLEGE PROFILE,
AND THE CASELOADS THERE ARE
ASTRONOMICAL.
SO I THINK ANYTHING WE CAN
MENTION ABOUT THE NEEDS FOR
LOWER RATIOS FOR THOSE
DISABILITY SUPPORT PEOPLE WOULD
BE REALLY HELPFUL.
>> THANK YOU, DENA.
MITCHELL.
ON BEHALF OF SAMHSA, DO YOU HAVE
ANY COMMENTS?
I SEE YOUR HAND IS RAISED.
>> YES, I WAS JUST GOING TO
SUGGEST THAT IN ADDITION TO
PUBLIC SCHOOLS, THAT PRIVATE
SCHOOLS, COLLAR TER SC CHARTER D
HOMESCHOOLS BE TOUCHED ON.
I'M LOOKING AT THE NCES
STATISTICS REPORT FROM 2019, AND
IT LOOKS LIKE TRADITIONAL PUBLIC
SCHOOLS HAVE ABOUT 47 MILLION
STUDENTS BUT CHARTER SCHOOLS NOW
HAVE 3 MILLION, HOMESCHOOLS ARE
1.7 MILLION, AND PRIVATE SCHOOLS
ARE ABOUT 5.8 MILLION, SO THAT'S
STILL POTENTIALLY A SUBSTANTIAL
NUMBER OF THOSE WITH ASD WHO ARE
BEING EDUCATED IN NON-PUBLIC
SCHOOL SETTINGS THAT MAY HAVE
CHALLENGES THAT MIGHT BE WORTH
DISCUSSING IF POSSIBLE.
>> DO WE HAVE ANYBODY FROM
DEPARTMENT OF ED ON TODAY?
I DON'T THINK SO.
WHAT ARE THE PARTICULAR ISSUES
THAT RELATE TO PRIVATE SCHOOLS,
CHARTER SCHOOLS AND HOME SCHOOLS
THAT WE WOULD WANT TO MENTION IN
THE PLAN?
I'M NOT 100% AWARE OF WHAT IS
NEEDED THERE.
>> I MIGHT JUST MENTION THAT IF
THERE ISN'T A LOT OF RESEARCH,
JUST IF THOSE ARE SETTINGS WHERE
MAYBE SOME PEOPLE WITH ASD ARE
RECEIVING THEIR EDUCATION.
I'M NOT AN EXPERT ON THAT TOPIC,
I WOULD DEFER TO OTHERS, BUT I
JUST THOUGHT BECAUSE IT WAS
DISCUSSION OF PUBLIC SCHOOLS AND
WITHOUT GETTING INTO TOO MUCH OF
SOME OF THE POLITICS AND STUFF,
YOU KNOW, JUST IF THERE -- IT
MIGHT BE GOOD TO HAVE DISCUSSION
ON THE OTHER OPTIONS TOO, IF
THERE'S RESEARCH ON IT.
>> OKAY.
THANK YOU.
I CAN ALWAYS CHECK IN WITH
DEPARTMENT OF EDUCATION TOO
ABOUT THAT.
THANK YOU.
SO PAUL.
>> A SMALL COMMENT, SUSAN.
I'M JUST THINKING IT'S WORTH
TOUCHING ON AAC, AUGMENTIVE AND
ALTERNATIVE COMMUNICATION
MODALITIES, IF IT DOESN'T
ALREADY TOUCH ON THAT.
OTHER PEOPLE ON THE COMMITTEE
WILL HAVE THOUGHT MUCH MORE
DEEPLY ABOUT THIS.
IF I RECALL ALSO, ONE OR TWO
COMMITTEE MEETINGS A I THINK WE
RECEIVED A NUMBER OF PUBLIC
COMMENTS ABOUT AAC, AND I THINK
IT'S IMPORTANT THAT THESE KINDS
OF MODALITIES BE MADE AVAILABLE,
ARE ACCEPTED, YOU KNOW, AND THAT
THE SUPPORT FOR SOMETIMES
EXPENSIVE EQUIPMENT IS
AVAILABLE.
>> GREAT, THANK YOU.
WE TOUCH ON DEVELOPMENT OF AAC
IN THE INTERVENTION SECTION, BUT
DEPLOYMENT AND HAVING ADEQUATE
TRAINING FOR PEOPLE TO BE ABLE
TO USE AAC, GETTING ACCESS TO
THINGS, CAN BE A PART OF CHAPTE.
SO THANK YOU FOR THAT.
DENA, DO YOU HAVE ANOTHER
COMMENT?
>> YEAH.
I DON'T KNOW IF IT APPEARS
SOMEWHERE ELSE, BUT YOU KNOW,
REPRODUCTIVE HEALTHCARE, I KNOW
WE HAVE LGBTQ STUFF COMING UP IN
TERMS OF DISPARITIES.
BUT REPRODUCTIVE HEALTHCARE AND
PARTICULARLY HEALTHCARE THAT
SPECIALIZES IN TREATMENT FOR
SEXUAL ASSAULT, I THINK THERE'S
A HUGE VOID THERE.
AND GIVEN THE HIGH FREAK SEAL OF
SEXUAL FREQUENCY OFSEXUAL ABUSE,
HAVING PEOPLE WHO ARE HIGHLY
QUALIFIED TO ADDRESS THOSE
THINGS FOR THIS POPULATION IS
REALLY IMPORTANT.
>> THANK YOU.
I THINK THERE PROBABLY MAY BE
MORE THAN ONE PLACE THAT WE
COULD FIT SOMETHING IN ABOUT
THAT.
AND THAT HAS COME TO MY
ATTENTION TOO, ESPECIALLY WITH
REGARD TO, SAY, ONLINE
VICTIMIZATION, THAT THERE'S A
NEED FOR PROFESSIONALS WHO
UNDERSTAND HOW TO WORK WITH
PEOPLE ON THE AUTISM SPECTRUM TO
HELP THEM THROUGH SITUATIONS
WHERE THEY MAY HAVE BEEN
VICTIMIZED IN VARIOUS WAYS.
SCOTT, DO YOU HAVE ANOTHER
COMMENT?
>> YEAH.
FIRST I WANTED TO CONCUR WITH
THE MENTION OF AAC, THAT I THINK
THERE'S A PLACE FOR THAT IN HERE
ON SERVICE SUPPORTS TOO FOR
AUGMENTIVE ALTERNATIVE
COMMUNICATION, AS WELL AS ACCESS
TO, FOR INSTANCE, SUPPORTS LIKE
CAPTIONING THAT CAN BE HELPFUL
FOR FOLKS AS COMPLEMENTING
PROCESSING OF INFORMATION WHEN
YOU MAY EXPERIENCE AUDITORY
PROCESSING ISSUES.
THERE'S LIKE NO RESEARCH AT ALL
ON CAPTIONING ACCESS BY AUTISTIC
CHILDREN, ADOLESCENTS AND
ADULTS.
AND THE AAC USE AS FAR AS
SUPPORTING GOOD ACCESS TO TOOLS
AND TECHNOLOGIES AND FRANKLY
PART-TIME AAC USE TOO, THAT AAC
USE WOULD BE OF BENEFIT, I
THINK, TO MILLIONS MORE AUTISTIC
PEOPLE IN THE UNITED STATES,
WORLDWIDE, SOMETIMES EVEN ON AN
OCCASIONAL BASIS WHERE I THINK
FOLKS DON'T UNDERSTAND THAT WE
HAVE PART-TIME AND FULL TIME
USERS.
I USE AAC SOMETIMES MYSELF, AND
I THINK THAT WE NEED MORE
RESEARCH ON THAT, WE NEED TO
EMBED THAT MORE IN PRACTICES AND
POLICIES, THAT THERE'S A
SPECTRUM OF -- IF YOU WILL, OF
A AC TOOLS AND SUPPORTS AND
ACCESS, HIGH-TECH AND LOW TECH,
THAT IT CAN BE OF GREAT BENEFIT
TO MANY AUTISTIC PEOPLE,
INCLUDING FOLKS WHO OTHERWISE
ARE OFTEN SPEAKING WOULD FIND
BETTER ACCESS TO AAC AND
TRAINING ON AAC TOOLS AND
TECHNOLOGIES TO BE ABLE TO BE --
AND SYSTEMS TO HELP THEM AND
SUPPORT BETTER COMMUNICATION
ACCESS IN SCHOOL, WORK,
COMMUNITY LIVING, HEALTHCARE.
I ALSO FORGOT TO MENTION, AND
YOU DON'T HAVE THIS IN HERE
PROBABLY PARTLY BECAUSE YOU MAY
NOT BE AWARE OF THE RESEARCH
THAT'S JUST BEEN -- IT'S BEING
PUBLISHED RIGHT NOW RECENTLY.
WE'RE STARTING TO NOW HAVE DATA
ON THE SERVICES CLIFF FOR -- AND
I THINK IT FITS WELL INTO THE
EDUCATIONAL SYSTEM MENTIONED
HERE, FOR INSTANCE, IN K-12, IS
THE SERVICES CLIFF IS THE
DROPOFF ON ACCESS FOR AUTISTIC
PEOPLE AS KIDS AND ADOLESCENTS
TO OCCUPATIONAL THERAPY AND
SPEECH AND LANGUAGE THERAPY AND
LEARNING SUPPORTS AND OTHER
SUPPORTS LIKE THAT.
THERE IS A HUGE, HUGE DROPOFF
AFTER PRIMARY SCHOOL, IS THAT
MANY OF US, AND THIS WAS THE
CASE FOR ME, I RECEIVED
OCCUPATIONAL THERAPY AS A KID IN
PRIMARY SCHOOL FROM FIFTH GRADE
ALL THE WAY THROUGH -- SORRY,
FROM FIRST GRADE ALL THE WAY
THROUGH FIFTH GRADE, AND DID NOT
RECEIVE IT IN MIDDLE SCHOOL OR
HIGH SCHOOL AND HAVE NOT
RECEIVED IT AS AN ADULT AS WELL.
WE DON'T HAVE GOOD TRAINING FOR
O.T.s AND SPEECH AND LANGUAGE
THERAPISTS AND OTHER HUMAN
SERVICES SPECIALISTS ON AUTISM
AS MUCH IN TERMS OF THE
EMERGENCE OF WHAT WE'VE HAD IN
THE RESEARCH LITERATURE AND
KEEPING PACE WITH THAT, AND
EMPOWERING FOLKS FOR ACCESS AND
BEST PRACTICES FOR SUPPORTS AND
STRATEGIES, AND MAKING SURE THAT
IT'S BEING FUNDED, I THINK IS
REALLY IMPORTANT AND THE SERVICE
SYSTEMS ARE PRIORITIZING THAT,
BECAUSE I THINK THESE SPECIALIST
SOPs, SPEECH AND LANGUAGE
PATHOLOGISTS AND OCCUPATIONAL
THERAPY PRACTITIONERS AND OTHER
SOCIAL WORKERS, OTHER HUMAN
SERVICES SPECIALISTS SHOULD BE
SUPPORTING AUTISTIC PEOPLE
THROUGHOUT K-12 AND BEYOND, AND
THAT SHOULD BE PART OF FOLKS'
IEPs AND REHAB ACT 504
PLANS, AND IT JUST NOT
HAPPENING.
BECAUSE WE SEE THAT DROPOFF IN
THE NUMBERS.
I BELIEVE AN ARTICLE HAS JUST
RECENTLY BEEN PUBLISHED, I'LL
SEAL IF ISEE IF I CAN GET YOU TE
ARTICLES, SHOWING HOW MUCH THE
NUMBERS DECREASE SUBSTANTIALLY
BY SECOND DI SCHOOL, THEN WHEN
YOU HIT ADULT LIFE, ACCESS TO
O.T., SPEECH AND LANGUAGE
THERAPY IS ALMOST NON-EXISTENT
AT THAT POINT.
SO IT'S SOMETHING THAT REALLY
NEEDS TO BE ADDRESSED AND WOULD
MAKE A HUGE DIFFERENCE, I THINK,
IN QUALITY OF LIFE AND HEALTH
AND WELLNESS FOR FOLKS.
AND IT IS SUPPORTED BY FLSHES AE
AS WELL, BUT OFTEN THERE'S A
DERTH OF SERVICE PROVIDERS AT
TIMES FOR OUTSIDE PRIVATE ACCESS
TO OCCUPATIONAL THERAPY AND
SPEECH AND LANGUAGE THERAPY, AND
SOME METRO AREAS AND RURAL AND
SUBURBAN AREAS MAY NOT HAVE GOOD
ACCESS TO PROVIDERS.
I KNOW, FOR INSTANCE, HERE IN
THE D.C. METRO AREA, THERE'S
ONLY I THINK FOUR OR FIVE
O.T.s, FOR INSTANCE, THAT TAKE
MY HEALTH INSURANCE, AND MOST OF
THEM -- AND I KNOW SOME OF THIS
MAY END UP BLEEDING INTO
QUESTION 6 INSTEAD OF 5, BUT
SOME OF THEM DON'T SPECIALIZE IN
COGNITIVE DISABILITIES AND
EXECUTIVE FUNCTIONING AND ONLY
DO MORE MOTOR THINGS AND MAY NOT
BE ABLE TO HELP WITH SENSORY,
AND INDEPENDENT LIVING ASPECTS
THAT O.T.s SHOULD BE ABLE TO
HELP OUT WITH AS A FIELD.
FOR INSTANCE, SLPs WITH
COMMUNICATION ACCESS INCLUDING
ACUs.
THERE'S A LOT OF O.T.s THAT
ARE REALLY EXTENSIVELY TRAINED
IN ACUs AND SHOULD BE
SUPPORTING EMPOWERMENT AND
ACCESS TO ACUs FOR AUTISTIC
PEOPLE FROM DIFFERENT
BACKGROUNDS ACROSS THE LIFESPAN.
INCLUDING CHILDHOOD --
>> THAT WOULD BE GREAT, IF YOU
WANT TO SEND THAT REFERENCE.
I KNOW THAT THE SERVICES CLIFF
WAS A TOPIC OF A DREXEL AUTISM
INDICATORS REPORT A FEW YEARS
AGO THAT WAS QUITE SIGNIFICANT
AND BROUGHT THAT TO A LOT OF
PEOPLE'S ATTENTION, BUT IT WOULD
BE GREAT TO HEAR THE LATEST ON
THIS, SO THAT WOULD BE VERY
HELPFUL.
THANK YOU.
JULIE, DO YOU HAVE SOME
COMMENTS?
>> JUST A QUICK COMMENT TO PIGGY
BACK ON WHAT SCOTT WAS JUST
SAYING.
I'LL SEND YOU A PAPER THAT CAME
OUT LAST YEAR THAT SHOWS THAT
THE SERVICE CLIFF LOOKS PRETTY
DIFFERENT FOR AUTISTIC PEOPLE
WHO DO AND DO NOT HAVE AN
INTELLECTUAL DISABILITY
ACTUALLY, AND FOR PEOPLE THAT DO
HAVE AN INTELLECTUAL DISABILITY,
IT LOOKS SORT OF LIKE THE
SERVICE CLIFF WE TEND TO THINK
OF WITH THE BIG DROPOFF, BUT
WHEN PEOPLE DON'T HAVE AN
INTELLECTUAL DISABILITY, WE
THINK OF IT AS KIND OF LIKE A
SERVICE SLOPE WHERE THEY START
LOSING ACCESS TO SERVICES YEAR
BY YEAR WHILE THEY'RE IN HIGH
SCHOOL, AND THEN THAT DROPOFF
DOESN'T LOOK AT DISTINCT WHEN
THEY LEAVE HIGH SCHOOL BECAUSE
THEY'VE ALREADY LOST QUITE A FEW
OF THE SERVICES THAT THEY HAD
BEEN GETTING EARLIER.
SO I DON'T KNOW HOW THAT FACTORS
INTO THIS, BUT SCOTT'S
EXPERIENCE IN WHAT HE'S SEEN IS
SIMILAR TO WHAT WE'VE SEEN AS
WELL.
I'D BE HAPPY TO SEND THAT ALONG.
>> GREAT.
THAT WOULD BE REALLY HELPFUL.
THANKS, JULIE.
IVANOVA?
>> HELLO, THIS IS IVANOVA.
I JUST WANTED TO CHECK THAT
DENTISTRY UNDER HEALTHCARE
SYSTEMS?
BECAUSE THERE'S A LOT OF
AUTISTIC PEOPLE THAT DON'T HAVE
ACCESS TO DENTISTRY AND GOOD
DENTAL CARE, AND THAT DOES
AFFECT OUR HEALTH.
SO I JUST WANTED TO MAKE SURE
THAT THAT'S BEING LOOKED AT
UNDER THE HEALTHCARE SYSTEMS.
THANK YOU.
>> THANK YOU.
ACTUALLY, IN THE IACC, WE
INCLUDED DENTAL HEALTH IN ONE OF
THE OBJECTIVES OF AN EARLY
STRATEGIC PLAN, THANKS TO ONE OF
OUR MEMBERS WHO WAS A CHAMPION
OF THAT.
AND ACTUALLY THERE ARE PROGRAMS
NOW TO TRAIN DENTISTS IN HOW TO
HELP PEOPLE ON THE AUTISM
SPECTRUM.
I THINK THE IACC DESERVES SOME
CREDIT FOR HAVING HELPED WITH
THAT.
BUT IT'S CERTAINLY GOOD TO
MENTION IN THE CONTEXT OF
HEALTHCARE.
SO THANK YOU.
DENA.
>> TO PIGGY BACK ON WHAT IVANOVA
JUST SAID, I'D LIKE TO POINT OUT
THAT EVEN WHERE THERE IS DENTAL
CARE, IT USUALLY DOESN'T INCLUDE
COSMETIC DENTISTRY.
AND FOR PEOPLE WHO ARE ALREADY
STRUGGLING WITH SOCIAL
ENGAGEMENT, JUST KEEPING TEETH
HEALTHY MAY NOT BE SUFFICIENT.
MY SON IS MISSING 13 PERMANENT
TEETH.
AND IF WE HAD NOT BEEN ABLE TO
AFFORD COSMETIC DENTISTRY FOR
HIM, HE WOULD HAVE LOOKED VERY,
I DON'T KNOW -- PEOPLE TREAT
PEOPLE WITH BAD DENTISTRY
INHUMANELY.
AND IT'S A VERY HUGE SOCIAL
THING.
I DID ALSO WANT TO -- WHAT WAS
THE OTHER THING I WANTED TO
BRING UP?
I WANTED TO ALSO TALK ABOUT IN
THE EDUCATION SYSTEM, AND THIS
MAY BELONG SOMEWHERE ELSE, I WAS
SHOCKED TO FIND OUT THAT UNDER
504 PLANS, THEY DON'T
NECESSARILY ACKNOWLEDGE THE
DIAGNOSIS.
SO WHEN YOU'RE DOING A
SCHOOL-BASED COUNT FOR THE
NUMBER OF STUDENTS WHO HAVE
EDUCATIONAL PLANS FOR AUTISM, IT
WILL USUALLY ONLY INCLUDE KIDS
WITH IEPs, AND THAT MEANS
WE'RE MISSING A HUGE NUMBER OF
PEOPLE.
AND NOT TOO MUCH OF A FINE POINT
ON WHAT JULIE SAID, PEOPLE WITH
INTELLECTUAL DISABILITIES
USUALLY HAVE INCORPORATED INTO
THEIR SCHOOL DAYS VERY SPECIFIC
TIMES TO ACQUIRE THOSE
INDEPENDENT LIVING SKILLS.
THEY ACTUALLY HAVE HIGHER RATES
OF AT LEAST PART-TIME EMPLOYMENT
THAN PEOPLE WITHOUT INTELLECTUAL
DISABILITY, BECAUSE PEOPLE
WITHOUT I.D. ARE IN ACADEMICS
ALL DAY LONG, AND THEY GET NO
OPPORTUNITY TO LEARN ANY
INDEPENDENT LIVING SKILLS.
WE'VE EVEN GOTTEN RID OF HOME
ECONOMICS, SO THERE'S REALLY
LIKE NO PLACE FOR TO HAPPEN.
SO YOU KNOW, IF I WERE THE QUEEN
OF EVERYTHING, THEY WOULD HAVE
LONGER SCHOOL LIFETIME, THEY
WOULD BE IN UNTIL 21, AND HALF
OF THE DAY WOULD BE SPENT ON
WORK SKILLS AND INDEPENDENT
LIVING SKILLS, BUT THAT'S NOT
HOW THINGS ARE STRUCTURED,
THAT'S NOT WHAT THE UNIONS WILL
ALLOW, BUT YOU KNOW, THAT'S JUST
A HUGE GAP.
THAT'S PART OF WHY WE SEE SO
MANY KIDS NOT MAKE IT PAST THEIR
FRESHMAN YEAR, EVEN IN A
PART-TIME POST SECONDARY PROGRAM
BECAUSE THEY DON'T HAVE THE
SKILLS TO FUNCTION WITHOUT
PROMPTING, CONSTANT PROMPTING.
SO I JUST WANTED TO ADD THAT TO
THE LIST.
>> THANK YOU.
THANK YOU FOR BRINGING THAT UP.
I'M GOING TO MAKE A SMOOTH
TRANSITION INTO QUESTION 6 AS
WE'VE ALREADY BEEN TALKING ABOUT
SOME THINGS THAT ARE COVERED IN
QUESTION 6.
SO QUESTION 6 IS THE LIFESPAN
ISSUES QUESTION, AND THE WAY THE
QUESTION IS WORDED CURRENTLY IS,
HOW CAN WE MEET THE NEEDS OF
PEOPLE ON THE AUTISM SPECTRUM
THROUGHOUT THE LIFESPAN?
AND THE TOPICS THAT ARE IN THIS
QUESTION ARE: TRANSITION TO
ADULTHOOD.
ADULT SERVICES AND SUPPORTS,
INCLUDING POST SECONDARY
EDUCATION, EMPLOYMENT, HOUSING,
TRANSPORTATION AND OTHER
SERVICES.
ADULT DIAGNOSIS.
ADULT HEALTH AND WELL-BEING.
SERVICE DELIVERY FOR ADULTS.
COMMUNITY INTEGRATION.
SERVICES AND SUPPORTS FOR ADULTS
WITH HIGH SUPPORT NEEDS.
OLDER ADULTHOOD IN AUTISM.
JUSTICE, SAFETY, EMERGENCY
PREPAREDNESS AND PREMATURE
MORTALITY.
AND INCLUSION OF LIVED
EXPERIENCES IN RESEARCH,
SERVICES AND POLICY.
SO THOSE ARE SOME OF THE TOPICS
THAT ARE INCLUDED IN THIS
QUESTION, BUT LIKE ALL THE
OTHERS, ARE THERE OTHER TOPICS
THAT WE WANT TO INCLUDE HERE OR
ANYTHING THAT YOU WANT TO
HIGHLIGHT UNDER SOME OF THE
TOPICS I'VE JUST MENTIONED, OR
HAVE THERE BEEN SOME RECENT
SIGNIFICANT CHANGES IN THE FIELD
THAT SHOULD BE REFLECTED IN THE
STRATEGIC PLAN IN TERMS OF
SHAPING OUR DIRECTION.
SO I WILL GO TO IVANOVA SMITH.
>> I THINK IT WOULD BE GOOD TO
HAVE AUTISTIC PARENTING OR
PARENTING -- SUPPORTING PARENTS
THAT ARE AUTISTIC, AUTISTIC
PARENTS, OR SUPPORTED AUTISTIC
FAMILIES.
LIKE THE FATHER IS AUTISTIC AND
THEN THE KID IS AUTISTIC BUT
MAYBE THE MOM ISN'T, YOU KNOW,
LIKE THAT KIND OF SITUATION
WHERE, LIKE, IT'S A
MULTI-AUTISTIC FAMILY AND
SUPPORTING THOSE FAMILIES.
>> THANK YOU.
YES, AND WE DO HAVE SOMETHING
ABOUT CAREGIVING IN QUESTION 5,
BUT THE THOUGHT ABOUT PARENTS
THAT MAY BE ON THE SPECTRUM OR
HAVE OTHER KINDS OF CHALLENGES
IS NOT SPECIFICALLY MENTIONED
RIGHT NOW, SO THAT COULD BE
ADDED INTO THAT.
WE'LL GO TO JENNIFER JOHNSON
NEXT.
GENERAL FJENNIFER, IT LOOKS LIKE
UNMUTED BUT I DON'T KNOW IF YOU
MIGHT BE HAVING SOME SORT OF
COMPUTER ISSUE.
WHY DON'T I COME BACK TO YOU,
AND IF YOU NEED HELP, YOU CAN
TEXT OUR TEAM AND PEOPLE CAN TRY
TO HELP YOU OUT.
ALYCIA.
>> SORRY, I DIDN'T KNOW I WAS
NEXT.
I WOULD LIKE TO HIGHLIGHT
SOMETHING THAT I THINK WE
MENTIONED ON SECTION 3 BUT --
QUESTION 3 BUT I THINK IT
BELONGS IN BOTH PLACES AND I'M
FLEXIBLE IN HOW IT GETS
INCLUDED, IS THAT WE NEED TO
CONTINUE TO SUPPORT AND DEVELOP
AND TO REFINE LONGITUDINAL
STUDIES SO THESE ARE STUDIES
THAT CAN START ANY TIME IN A
PERSON'S LIFE BUT FOLLOWS THEM
ACROSS TIME, SO YOU TAKE THAT
SAME PERSON AND YOU'RE FOLLOWING
THEM ACROSS TIME UNTIL WAY INTO
ADULTHOOD, AND I THINK SOME OF
THESE STUDIES HAVE BEEN VERY
JUST LOOKING AT
CROSS-SECTIONAL AN ANALYSES BUT
ACTUALLY THESE PROSPECTIVE
LONGITUDINAL ANALYSES.
THE REASON I WANT THEM MENTIONED
IN BOTH PLACES IS BECAUSE
TRADITIONAL FUNDING MODELS DON'T
NECESSARILY ACCOMMODATE THEM.
TRADITIONAL NIH AND OTHER
MECHANISMS ARE FROM FOUR TO FIVE
YEARS, A.S. DEFINITELY FOUR TO
FIVE YEARS SO THEY DON'T REALLY
FIT INTO TRADITIONAL MODELS, SO
I THINK WE NEED TO ENSURE THAT
THESE STUDIES CONTINUE TO GET
SUPPORTED AND I KNOW THAT
THERE'S A NUMBER OF DIFFERENT
WAYS THAT THEY CAN.
FOR EXAMPLE, THE CE STUDY IS
FUNDED IN INCREMENTS BUT THEY
JUST GOT FUNDED FOR THEIR NEXT
SET OF INCREMENTAL STUDIES FOR
THE NEXT FOUR YEARS TO FOLLOW
THOSE KIDS IN THE FIRST COUPLE
OF CE PHASES.
SO THAT'S ONE PARTICULAR
EXAMPLE, BUT I JUST WANT TO PUT
A PLUG IN FOR THE IMPORTANCE OF
LONGITUDINAL ASSESSMENT.
>> THANK YOU.
AND I BELIEVE THAT WE DO HAVE
SOMETHING IN QUESTION 6 ABOUT
LONGITUDINAL STUDIES IN ADULTS
AND COHORTS THAT GO INTO
ADULTHOOD, BUT I DON'T THINK
THERE'S A PROBLEM WITH
MENTIONING IT IN MORE THAN ONE
PLACE.
AND I DON'T KNOW IFFY LANE MAY T
HAVE A FOLLOW UP TO THAT.
DO YOU WANT TO GO AHEAD, ELAINE?
I THINK ELAINE'S HAND
DISAPPEARED SO MAYBE SHE MIGHT
BE HAVING SOME PROBLEMS TOO.
SO NEXT I'LL GO TO JALYNN
PRINCE.
NOW JALYNN HAS DISAPPEARED.
SO STEVEN, DO YOU HAVE SOME
COMMENTS IN WRITING?
>> HI THERE.
THIS IS STEVEN.
I'LL BE ADDRESSING A QUESTION
FROM LINDSEY NEBEKER.
QUESTION IS, UNDER WHICH
QUESTION WOULD WE BE ADDRESSING
SERVICES AND SUPPORTS FOR ADULTS
WHO ARE VETERANS OR SERVING IN
THE MILITARY?
>> THEY COULD BE ADDRESSED IN
THIS QUESTION THAT'S ON
ADULTHOOD.
ARE THERE SPECIFIC ISSUES
RELATED TO BEING IN THE MILITARY
THAT YOU'RE CONCERNED ABOUT?
SO MAYBE LINDSEY MIGHT HAVE TO
COME BACK WITH FURTHER
CLARIFICATION ABOUT THAT.
>> NO, THIS IS LINDSEY.
I'LL JUST POP IN.
NO, THE ONLY THING -- THE REASON
I WAS ASKING THIS QUESTION IS
THAT I WAS TRYING TO READ
THROUGH AND I WAS TRYING TO
LOCATE ANY REFERENCES TO IT.
AND I MAY HAVE MISSED IF THERE
WAS MENTION OF IT IN THE
DOCUMENTS, BUT --
>> NO, THE V.A. IS A MEMBER OF
THE COMMITTEE, BUT WE DON'T
REALLY HAVE A LOT OF INFORMATION
ABOUT VETERANS.
ONE OF THE ISSUES IS I THINK
THAT THEY DO HAVE VETERANS WHO
ARE GETTING DIAGNOSED BUT IF
YOU'RE ACTIVE DUTY, THERE CAN BE
PROBLEMS WITH MENTIONING THAT
YOU MAY BE ON THE SPECTRUM OR
EVEN GETTING EVALUATED AS FAR AS
I UNDERSTAND.
BUT SOME PEOPLE WHO ARE VETERANS
DO GO ON TO GET DIAGNOSES, SO WE
COULD GET SOME INFORMATION ABOUT
THE V.A. ABOUT THAT.
BUT THE LAST TIME I TALKED WITH
THEM, IT SOUNDED LIKE IT WASN'T
VERY DOCUMENTED, SO WE COULD SEE
IF THERE'S ANYTHING MORE THAT
THEY MIGHT HAVE TO ADD.
IS THAT WHAT YOU'RE TALKING
ABOUT?
>> YEAH, I THINK I WAS MORE
CONCERNED OR WANTING TO FOCUS ON
BECAUSE OF THE COMPLEXITY OF THE
SERVICES AND SUPPORTS THAT
VETERANS AND PEOPLE IN THE
MILITARY ALREADY HAVE, YOU KNOW,
COMBINING THAT WITH IF THEY
HAPPEN TO BE AUTISTIC.
AND JUST RECOGNIZING AND
ACKNOWLEDGING THE COMPLEXITY OF
THE SERVICES AND SUPPORTS THAT
WE'D NEED TO ADDRESS.
>> SO WE CAN CHECK IN WITH THE
VA ABOUT THAT AND SEE IF THEY
HAVE ANYTHING THEY WOULD WANT US
TO MENTION IN THE PLAN.
SO I'LL GO BACK TO ELAINE TO SEE
IF YOU MIGHT BE ABLE TO GIVE
YOUR COMMENT.
>> OH, JEEZ, I DON'T KNOW WHY
EVERYTHING FROZE UP.
>> NO PROBLEM.
>> THIS IS FOLLOWING UP FROM
YESTERDAY ON OVERSAMPLING, SO
THIS IS ON THIS TOPIC OF
LONGITUDINAL STUDIES.
SO NOT JUST INDIVIDUAL -- NOT
JUST STUDIES FOCUSED
SPECIFICALLY ON AUTISM, BUT A
LOT THAT THE FEDERAL GOVERNMENT
IS DOING, WE SHOULD REALLY BE
ADVOCATING FOR OVERSAMPLING OF
THIS POPULATION.
AND THE THING THAT ACTUALLY -- I
WAS JUST ON A CALL THE OTHER
DAY, THERE'S MAYBE SOMEBODY ON
THE CALL WHO KNOWS MORE ABOUT
THIS, BUT BUREAU OF LABOR
STATISTICS IS VERY SPECIFICALLY
IN THE PROCESS OF PLANNING A
LONGITUDINAL STUDY THAT COVERS
SPECIFICALLY THIS TRANSITION
PERIOD FROM -- INTO ADULTHOOD,
AND SO IT JUST SEEMS TO ME THAT
THIS IS LIKE A PERFECT TIME TO
GET IN AND THERE ARE PROBABLY
OTHER THINGS, SO IF ANYBODY
KNOWS MORE ABOUT THAT OR I CAN
SEND THE CONTACT OF THE PEOPLE
THAT WERE LOOKING FOR INPUT ON
THAT STUDY.
>> OH, THANKS.
IS THAT SOMETHING THAT'S A PART
OF DEPARTMENT OF LABOR?
>> I KNOW NOTHING ABOUT IT.
IT'S BUREAU OF LABOR STATISTICS.
SCOTT, DO YOU KNOW?
>> SO I'LL HAVE TO CROSS-CHECK
ON THAT.
I KNOW WE ARE RUNNING A RESEARCH
PROJECT AT ODEP ON AUTISTIC --
ON ACCESS TO EMPLOYMENT, WE'VE
BEEN RUNNING LISTENING SEGS, ET
CETERA.
BUT I HAVEN'T HEARD ANYTHING
ABOUT OUR SISTER AGENCY BLS
RUNNING ANYTHING BUT I CAN CHECK
WITH MY COUNTERPARTS THERE AFTER
THIS SESSION AND ASK ABOUT THAT.
>> I'LL JUST GO AHEAD AND EMAIL
THE CONTACTS I HAVE.
>> YEAH, IF YOU HEARD THAT FROM
BLS, IF YOU COULD EMAIL TO US
INCLUDING MYSELF TO LET ME KNOW
ABOUT THAT SO I CAN TALK TO THEM
AND GET ON THE SAME PAGE,
BECAUSE I'D BE DEFINITELY OF
INTEREST IN THAT FOCAL POINT.
>> IT SEEMS LIKE A GOODWIN
DOUGH.
OKAY, THANK YOU.
>> THANK YOU.
JENNIFER JOHNSON, DID YOU EVER
GET YOUR SYSTEM WORKING BECAUSE
I KNOW I SKIPPED OVER YOU
BECAUSE YOU WERE HAVING SOME
KIND OF DIFFICULTIES.
>> CAN YOU HEAR ME NOW?
>> YES, I CAN HEAR YOU.
>> ALL RIGHT, GREAT.
I JUST HAD A COUPLE THINGS.
SOME OF WHICH MAY OVERLAP WITH
QUESTION 5.
BUT I THINK ONE IMPORTANT
POLICY, I GUESS DEVELOPMENT WE
COULD CALL IT, IS THE HCBS
SETTINGS RULE WILL BE -- THE
STATE TRANSITION PLANS WILL BE
COMPLETING THEIR PROCESS BY NEXT
YEAR, SO I THINK JUST LOOKING AT
THE PLAN AND WHAT'S IN THERE
RELATED TO THE SETTINGS RULE AND
WHERE IT MIGHT NEED TO BE
UPDATED GIVEN WHERE THINGS ARE
WITH THAT WILL BE IMPORTANT, AND
THEN ANOTHER THING THAT I THINK
WAS A DEVELOPMENT SINCE THE LAST
TIME THE STRATEGIC PLAN WAS
UPDATED WAS RELEASE OF THE OIG
REPORT ON CRITICAL INCIDENT
MONITORING SYSTEMS, AND YOU
KNOW, BIG GAPS IN THOSE
MONITORING SYSTEMS.
SO I THINK GENERALLY JUST
HEALTH -- MONITORING FOR HEALTH
AND SAFETY AND HOME AND
COMMUNITY-BASED SERVICES IS
ANOTHER IMPORTANT AREA THAT WE
WANT TO MAKE SURE IS
INCORPORATED INTO THE PLAN.
AND THEN THE LAST IS ON A
RELATED NOTE TO THAT, WE DON'T
HAVE A REALLY GOOD SYSTEM FOR
TRACKING ABUSE AND NEGLECT AND
VICTIMIZATION OF INDIVIDUALS
WITH DISABILITIES GENERALLY, BUT
AUTISTIC PEOPLE SPECIFICALLY, SO
I DON'T KNOW IF THERE'S ANYTHING
IN THE PLAN RIGHT NOW AROUND
THAT.
WE DO SUPPORT WHAT IS CALLED THE
NATIONAL ADULT MALTREATMENT
REPORTING SYSTEM, SO THIS IS A
SYSTEM THAT ADULT PROTECTIVE
SERVICE PROVIDERS WILL USE, OUR
AGENCIES WILL USE TO TRACK
ALLEGATIONS OF ABUSE OR NEGLECT,
SO THAT MAY BE SOMETHING TO
HIGHLIGHT IN THE PLAN AND OF
COURSE DOJ DOES HAVE THE WORK
ITS DOING RELATED TO INDIVIDUALS
WITH DISABILITIES, VICTIMS OF
CRIME, SO JUST AGAIN WANT TO
MAKE SURE THAT KIND OF ISSUE IS
INCORPORATED INTO THE PLAN.
>> OKAY, THANK YOU.
WE CAN ALSO TALK WITH DOJ ABOUT
ANYTHING THEY MIGHT KNOW ABOUT
THAT AS WELL.
OKAY.
NEXT WE'LL TAKE A COMMENT FROM
JOE PIVEN.
>> CAN YOU HEAR ME, SUSAN?
>> MM-HMM.
>> OKAY.
I THINK YOU'RE AWARE, OTHER
PEOPLE ARE AWARE I'VE HAD SORT
OF AN ACADEMIC RESEARCH INTEREST
IN OLDER AGE AND AUTISM.
SO THIS IS A BULLET POINT IN
THIS WHOLE SECTION ON LIFESPAN.
BUT I THINK IT REQUIRES A LOT
MORE.
I THINK JUST AS AN EXAMPLE,
AUTISM SPEAKS JUST HAD TWO DAYS
STARTING TO TRY TO UNDERSTAND
THE BREADTH AND DEPTH OF THIS
AREA.
AND I'M A LITTLE WORRIED THAT
IT'S KIND OF BEYOND THE SCOPE OF
THE CONVERSATION THAT WE'RE
HAVING THIS AFTERNOON TO JUST
THROW OUT A FEW IDEAS FOR A
STRATEGIC PLAN WHEN, YOU KNOW,
THERE ARE, IN OTHER FIELDS,
WHETHER IT'S PSYCHIATRY OR
MEDICINE, THERE ARE WHOLE
TEXTBOOKS WRITTEN ABOUT OLDER
AGE.
I THINK MAYBE YOU HEARD ME SAY A
FEW WEEKS AGO ON THE AUTISM
SPEAKS WORKSHOP.
I, FOR ONE, THINK WE HAVE ALMOST
NO KNOWLEDGE BASE ABOUT THIS
WHOLE AREA, AND I DON'T KNOW
THAT WE CAN JUST EXTRAPOLATE
FROM WHAT WE KNOW IN A DISORDER
THAT'S MOSTLY BEEN VIEWED AS A
DISORDER OF CHILDHOOD AND TO
OLDER AGE.
SO YOU KNOW, I THINK THAT THIS
JUST REQUIRES A LOT MORE
THOUGHT, AND I DON'T KNOW WHAT
YOU'RE THINKING ABOUT IN THIS
REGARD.
WE CAN TALK ABOUT SOME IDEAS OF
BRINGING A SESSION INTO THIS
MEETING, BUT I'M JUST WONDERING
ABOUT A SECOND WORKING GROUP OR
SOMETHING THAT WOULD GIVE THIS A
LITTLE BIT MORE ATTENTION.
GRANTED, I'M BIASED ABOUT THIS.
I'VE SPENT SOME TIME THINKING
ABOUT THIS MAYBE MORE THAN OTHER
PEOPLE, BUT I DON'T THINK PEOPLE
QUITE APPRECIATE HOW MUCH IS
THERE THAT WE'RE NOT THINKING
ABOUT.
SO I'LL JUST LEAVE IT AT THAT.
>> THANK YOU, JOE.
SO WE WERE INTENTIONAL ABOUT
TRYING TO CREATE SOMETHING
MENTIONING OLDER ADULTHOOD IN
AUTISM IN THE PLAN, AND THE PLAN
IS A GUIDING DOCUMENT.
IT'S NOT GOING TO BE A FULL
LITERATURE REVIEW ON ANY ONE
TOPIC.
IT'S ALREADY, AS YOU'VE ALL SEEN
HOW MANY DIFFERENT TOPICS WE'RE
TRYING TO COVER, THE PLAN WILL
PROBABLY END UP TO BE ABOUT 100
PAGES OR SO.
IT'S GOING TO BE A BIG DOCUMENT,
BUT IT WILL HAVE A LITTLE BIT
ABOUT A LOT OF THINGS, SO IT
WILL HAVE A LITTLE BIT ABOUT
OLDER ADULTHOOD, IT WON'T
NECESSARILY BE THE TEXTBOOK ON
OLDER ADULTHOOD, BUT WE
CERTAINLY CAN FIT IN A FEW
PARAGRAPHS ABOUT IF WE HAVE SOME
GOOD INFORMATION AND IT'S REALLY
MEANT TO BE A GUIDE TO THE
AGENCIES ABOUT, HEY, THIS IS AN
IMPORTANT ISSUE, WE WOULD LIKE
TO SEE MORE ACTION IN THIS AREA
AND GIVING THEM SOME THOUGHTS
ABOUT WHAT KINDS OF THINGS
PEOPLE THINK ARE IMPORTANT
PRIORITIES AND NOT GETTING INTO
MINUTIA AND LITTLE DETAILS, THAT
THOSE AGENCIES THAT GIVE OUT
FUNDING OR THAT ARE PROVIDING
PROGRAMS FOR PEOPLE WILL
PROBABLY LIFT SOMETHING FROM
WHATEVER LANGUAGE WE PUT THERE
AND BE ABLE TO SHAPE IT THEIR
OWN WAY USING CONSULTATIONS WITH
EXPERTS IN THOSE FIELDS.
SO WE DON'T NEED TO FEEL LIKE WE
NEED TO BE COMPREHENSIVE, BUT WE
DO WANT TO MENTION EVERY
IMPORTANT TOPIC AND I AGREE THAT
OLDER ADULTHOOD AND AUTISM IS
IMPORTANT, AND WE DEFINITELY
WANT TO INCLUDE IT IN THE PLAN.
SO THANK YOU.
I WILL GO TO ALYCIA HALLADAY
NEXT.
>> I JUST WANTED TO ASK A QUICK
QUESTION.
LIVE SPANLIFESPAN IS REALLY FROO
DEATH, WHEN WE REALLY SEEM TO BE
TALKING ABOUT ISSUES, AS WE
SHOULD, I'M OUTWARDLY
QUESTIONING THE TITLE OF THIS
PARTICULAR CHAPTER OR QUESTION.
WE'RE REALLY TALKING ABOUT
ANYTHING BETWEEN -- THINGS THAT
WE NEED TO PREPARE CHILDREN AND
YOUNG ADULTS FOR, BUT WE REALLY
MAY BE TALKING ABOUT THINGS THAT
START FROM ADOLESCENT TO
ADULTHOOD.
SO SHOULD WE KEEP IT AS
LIFESPAN?
IT SEEMS TO ME IT'S TOO BROAD
WHEREAS, YOU KNOW -- I DON'T
KNOW, I'M JUST THINKING THAT IT
MAY NOT ACCURATELY REPRESENT THE
LIFESPAN AND THAT KIND OF
OCCURRED TO ME WHEN WE TALKED
ABOUT LONGITUDINAL STUDIES AND
HOW THEY SHOULD BE FOCUSED ON
ADULTS.
>> JUST JUMPING IN, I THINK THAT
DIRECTDREXEL AND A COUPLE OF OTR
TRANSITION GROUPS HAVE USED LIFE
COURSE.
I DON'T KNOW IF THAT'S HELPFUL
OR NOT.
>> YEAH, I CAN'T REALLY SPEAK TO
HOW OTHER PEOPLE USE IT.
I JUST WANT US TO THINK ABOUT
WHETHER OR NOT WE'RE REALLY
TALKING ABOUT THE LIFESPAN IN
THIS PARTICULAR CHAPTER.
>> SO SOME OF THAT IS
HISTORICAL, AND WE HAVE QUESTION
5, AS I SAID IT WAS THERE BEFORE
QUESTION 6 CAME ALONG BECAUSE
THE COMMITTEE IN 2010 DECIDED
THEY REALLY WANTED TO FOCUS ON
ADULTHOOD AND WE STARTED WITH
ADULTHOOD WITH TRANSITION AND
YOUNGER ADULTHOOD, EARLY
ADULTHOOD, AND THAT WHOLE AREA
HAS EXPANDED A LOT OVER THE LAST
MORE THAN A DECADE, SO THERE IS
MORE TO TALK ABOUT NOW THAN
THERE WAS BACK IN 2010.
BUT SOME OF THE CHILDHOOD ISSUES
ARE IN QUESTION 5 MORE LIKE
EARLY EDUCATION AND ISSUES LIKE
THAT, SO THAT'S A HISTORICAL
DISTINCTION.
THESE CHAPTERS ARE NOT PERFECT.
HOWEVER, WE'RE TRYING TO KEEP
SOME OF IT THE SAME BECAUSE
WE'VE BEEN TRACKING DATA ON
RESEARCH SINCE 2008 AND IF WE
START MIXING THINGS AROUND, THEN
WE WON'T BE ABLE TO KEEP
TRACKING.
SO THAT'S THE PURPOSE OF KEEPING
THEM IN THEIR BINS, SO WE CAN --
>> THAT'S GOOD ENOUGH FOR ME.
>> I KNOW THAT FOR PEOPLE LIKE
YOU, YOU DO WANT TO KNOW HOW
THINGS HAVE CHANGED SINCE 2008,
SO OUR OFFICE IS KEEPING TRACK
OF THAT, BUT IF WE START KIND OF
MESSING AROUND WITH THE
DEFINITIONS TOO MUCH, THEN THOSE
DATA WILL NOR
MEANINGFUL.
>> OKAY.
>> IT'S NOT PERFECT.
>> I KNOW WE'RE TRYING TO BE
SUPER ACCURATE AND
REPRESENTATIVE ABOUT EACH
PARTICULAR QUESTION TITLES, SO
THAT'S WHERE I'M COMING FROM.
HOWEVER, I COMPLETELY AM WITH
YOU.
IF IT'S FOR THE PURPOSES OF
TRACKING AND MAKING SURE WE LOOK
AT THINGS ACROSS THE LIFESPAN SO
TO SPEAK OF THE IACC, THEN
THAT'S COMPLETELY RATIONAL.
>> YEAH, AND WE MIGHT BE ABLE TO
ADDRESS SOME OF THAT IN JUST HOW
WE TALK ABOUT IT.
BUT I AGREE, IT MIGHT BE
SLIGHTLY CONFUSING.
NEXT, LET'S SEE, WE'VE GOT ABOUT
5 MINUTES LEFT, I THINK WE CAN
GET THROUGH FOUR MORE QUESTIONS,
AND THEN WE WILL TAKE A BREAK.
SO DENA.
>> JUST REAL QUICKLY, I JUST
WANTED TO SAY THAT THERE ARE --
LIKE I'M IN THE STATE OF
NEW YORK, AND IF YOU DON'T HAVE
A DIAGNOSIS BEFORE THE AGE OF 18
IN THE STATE OF NEW YORK, YOU
EXPERIENCE HUGE ADMINISTRATIVE
BURDEN IN TRYING TO PROVE THAT
YOU WERE AUTISTIC BEFORE THE AGE
OF 18.
AND FOR MANY OF US, THERE WAS NO
DIAGNOSIS AVAILABLE WHEN WE WERE
THAT AGE.
THERE IS VERY LITTLE IN REGARD
TO RECORD-KEEPING ABOUT THROWS
THINGS, AND THAT MEANS AN ENTIRE
SEGMENT OF OUR POPULATION IS
DENIED ACCESS TO SERVICES.
AND IN ORDER TO GET THOSE
SERVICES AND TO CREATE THAT CASE
FILE TO PROVE EVIDENCE OF NEED,
YOU HAVE TO BASICALLY BE
NON-AUTISTIC.
LIKE YOU HAVE TO HAVE HUGE
EXECUTIVE FUNCTION, YOU HAVE TO
BE ABLE TO TRACK DOWN RECORDS.
IT'S AN UNDUE BURDEN, AND I
WOULD PROJECT THAT WE SHOULD
ASSERT THAT IF A PERSON
SUCCESSFULLY OBTAINS A
DEVELOPMENTAL ASSESSMENT, WHICH
IS ANOTHER BARRIER IN ITSELF,
BUT IF THEY HAVE ONE, THEY HAVE
CONFIRMATION OF A DIAGNOSIS,
THEY SHOULD BE ELIGIBLE FOR AT
LEAST SOME BASIC SERVICES, 10
HOURS A WEEK TO 10 HOURS A
MONTH, LIKE SOMETHING SHOULD BE
AVAILABLE.
I THINK ELIMINATING PEOPLE BASED
ON A LACK OF RECORDS OR BASED ON
I.Q. ALONE IS JUST UNTENABLE.
>> THANK YOU, DENA.
THAT IS AN IMPORTANT ISSUE.
IT CAME UP IN THE CONTEXT OF
WHEN WE TALKED ABOUT
HOMELESSNESS AND IT WAS BROUGHT
TO OUR ATTENTION WHEN WE
DISCUSSED HOMELESSNESS THAT SOME
INDIVIDUALS, WHO ARE ADULTS,
HAVE DIFFICULTY CONNECTING BACK
TO THE SERVICE SYSTEM IF THEY
DIDN'T HAVE THE DIAGNOSIS
PREVIOUSLY OR THEY WEREN'T
CONNECTED TO SERVICES.
SO WE WILL MAKE SURE WE SAY
SOMETHING ABOUT THAT IN THE
PLAN.
>> THANK YOU.
>> WE'LL TAKE A COMMENT FROM HAR
EE.
HARI.
>> HI THERE.
I RECEIVED SOME COMMENTS FROM
HARI, I DON'T KNOW IF HARI WANTS
TO SPEAK OR I'LL READ THE
COMMENTS.
HE SAYS, ON AGING, WE DON'T HAVE
ENOUGH INFORMATION, BUT WE CAN
EXPECT ALL THE LONG-TERM EFFECTS
OF THE PSYCHOTROPIC MEDICATIONS
THAT MANY ARE ON SINCE CHILDHOOD
TO ADDRESS BEHAVIORS.
THESE INCLUDE LIVER ISSUES,
MEMORY ISSUES, MOVEMENT ISSUES.
AND COMPOUNDING AGING ISSUES
FACED BY THE NON-AUTISTIC
POPULATION.
>> THANK YOU.
THANK YOU FOR THAT, HARI.
AND YES, THERE ARE A LOT OF
DIFFERENT ISSUES RELATED TO AGE,
AND WE'LL TRY TO DISTILL OUT
SOME IN THE SECTION THAT WE'LL
HAVE ON OLDER ADULTHOOD.
BUT IF YOU HAVE OTHER COMMENT
ABOUT IT, YOU CAN FEEL FREE TO
SEND THEM.
SO WE'LL TAKE A COUPLE MORE
COMMENTS, AND THEN I WILL GIVE A
LAST CHANCE TO ANYBODY WHO
HASN'T SPOKEN SO FAR IN THE
SESSION.
SO SCOTT?
>> YEAH, THANKS, SUSAN.
SO FOR THE EMPLOYMENT SECTION
COULD BE BOLSTERED AS FAR AS
PUTTING MORE IN THERE ON ACCESS
TO WORK-BASED LEARNING, AND
INTERNSHIP, APPRENTICESHIPS, ET
CETERA, FOR SUPPORTING
EMPLOYMENT ACCESS AND CAREER
PURSUITS, THE WORD "CAREER"
SHOULD BE IN THERE.
FOR AUTISTIC ADOLESCENTS IN
MIDDLE SCHOOL, HIGH SCHOOL, AND
AUTISTIC ADULTS THROUGHOUT THE
LIFE COURSE.
SO LIKE THAT SHOULD START -- AND
I DON'T KNOW IF SOME OF THAT
WOULD FIT INTO Q5 VERSUS Q6.
BETTER ACCESS TO WORK
OPPORTUNITIES IN HIGH SCHOOL HAS
MADE A MAJOR DIFFERENCE, DREXEL
FINDS IN RESEARCH THERE'S A HUGE
DISPARITY IN FOLKS WHO CAN
ACCESS INTERNSHIPS AND OTHER
FORMS OF WORK-BASED LEARNING IN
YOUTH AND YOUNG ADULTHOOD THAT
LEADS TO BETTER OPPORTUNITIES
FOR EMPLOYMENT ACROSS THE
LIFESPAN, SO YOU SEE THAT
DISPARITY FOR A LOT OF AUTISTIC
PEOPLE WHO HAVE ACCESS TO
EMPLOYMENT AND SOME WHO DON'T.
AND I CAN SEND YOU THE STUDIES
ON THAT THAT BACK UP AS FAR AS
THE NEED FOR SUPPORTING BETTER
ACCESS FOR WORK-BASED LEARNING,
EMPLOYMENT ACCESS, AND THINK,
FRANKLY, MORE RESEARCH ON BEST
PRACTICES THAT ARE
EVIDENCE-BASED THAT CAN HELP
EMPOWER FOLKS TO ACCESS SUPPORTS
THEY NEED TO THRIVE IN GAINFUL
EMPLOYMENT AND CAREER PATHS
ACROSS ADOLESCENCE AND ADULT
LIFE.
THERE HAVE BEEN SOME RECENT
LITERATURE REVIEWS THAT HAVE
BEEN RELEASED IN THE LAST
SEVERAL YEARS THAT ARE VERY
DISAPPOINTING THAT SHOW THAT
BASICALLY THE RESEARCH
LITERATURE NEEDS TO BE EXPANDED
AND ENHANCED SIGNIFICANTLY ON
EMPLOYMENT FOR AUTISTIC PEOPLE
ACROSS THE LIFESPAN THAT WE JUST
DON'T HAVE AS MUCH QUALITY THERE
AS WE SHOULD IN THE RESEARCH.
AND IT IS NOT COVERING FOCUSES
LIKE APPRENTICESHIPS AND
INTERNSHIPS AND MATCHING
EMPLOYMENT TO FIT FOLKS'
INTERESTS, SKILLS AND TALENTS
WITH TARGETED SUPPORTS AND
SERVICES THAT CAN HELP ADDRESS
BARRIERS AND DIFFICULTIES FOLKS
EXPERIENCE, AS WELL AS
PARTNERING WITH AUTISTIC PEOPLE
JUST LIKE WE SEE WITH COMMUNITY
BASED PARTICIPATORY RESEARCH AND
PARTICIPATORY ACTS AND RESEARCH
IN THAT SPACE.
I ALSO WANTED TO MENTION A
COUPLE OTHER THINGS ON SOME
OTHER TOPICS THAT WERE MENTIONED
AS FAR AS THE PARENTING AND
VETERANS ISSUES.
I KNOW ON THE VETERANS, AND FOR
CONTEXT, IT'S ALMOST LIKE A
DON'T ASK-DON'T TELETYPE OF A
THING WITH AUTISTIC PEOPLE THAT
FOLKS ARE AFRAID TO TALK ABOUT
THEIR AUTISM BECAUSE TECHNICALLY
THERE'S A MEDICAL RULEOUT IN THE
HANDBOOK FOR THE MILITARY AS FAR
AS SERVING IN ACTIVE DUTY.
IT'S PARALLEL TO A LOT OF OTHER
DISABILITIES HAVE THAT
COMPLEXITY TOO, ALTHOUGH THAT'S
STARTING TO POTENTIALLY CHANGE
OVER TIME.
THERE HAS NOW BEEN SOME
DISCUSSIONS ABOUT HAVING A
BETTER WAIVER PROCESS
POTENTIALLY FOR SOME OF THE
AGENCIES IN THE DEPARTMENT OF
DEFENSE FOR FOLKS WHO CAN SERVE
WHO ARE ABLE TO SERVE AND WANT
TO SERVE, AND THEN YOU HAVE SOME
VETERANS WHO MAY OR MAY NOT HAVE
KNOWN ABOUT THEIR AUTISM OR JUST
DIDN'T TALK ABOUT IT FOR THESE
COMPLEXITIES, WHO NOW ARE
TALKING ABOUT THEIR AUTISM AFTER
THEY'VE LEFT SERVICE IN THE
MILITARY.
SO I THINK THAT'S SOMETHING
MAYBE TO HAVE IN THERE.
JUST ALSO IF ONLY JUST BRIEFLY
TO MENTION THAT US A AUTISTIC E
HAVE SERVED IN OUR ARMED FORCES
AND THERE ARE AUTISTIC PEOPLE
WHO ARE VETERANS WHO'VE
EXPERIENCED TRAUMA AND PTSD, ET
CETERA.
AND THEN --
>> RAISE YOUR HAND AGAIN.
>> CAN SOMEONE GO ON MUTE?
SO ALSO THE PARENTING ASPECT AS
FAR AS I AGREE AS FAR AS
PARENTING, MARRIAGE, LIKE
ROMANTIC RELATIONSHIP, LIKE FULL
ACCESS FOR FOLKS AND MORE
RESEARCH KIND OF IN THAT SPACE.
WE HAVE THE -- THIS FITS INTO
WHAT WE HAVE WITH THIS Q6 AREA,
IS THAT PETER PAN PHENOMENON
HONESTLY WITH RESEARCH ON AUTISM
AND PRACTICES, SUPPORTS AND
POLICIES.
WE SEE SUCH A DROPOFF, BECAUSE
HISTORICALLY PEOPLE BELIEVE THAT
I GUESS AUTISTIC PEOPLE
DISAPPEARED OR SOMETHING LIKE
THAT AFTER LIKE EARLY CHILDHOOD.
AND IT'S CHANGED SOMEWHAT OVER
TIME, IT'S GOTTEN BETTER IN
RESEARCH PRACTICES AND POLICY,
BUT WE HAVE A WAYS TO GO IN THAT
SPACE AND I THINK PEOPLE DON'T
REALIZE THAT AUTISTIC PEOPLE ARE
PARENTS, YOU KNOW, WANT TO RAISE
FAMILIES, AND NEED SUPPORTS AND
SERVICES TO BE ABLE TO DO SO AND
HAVE EQUAL ACCESS IN THAT SPACE,
EQUAL ACCESS TO MARRY, ET
CETERA, AND NOT BE DISCRIMINATED
AGAINST, AND THAT NCD REPORT
FROM 2012 IS REALLY HELPFUL FOR
FRAMING THAT ISSUE AS FAR AS
CROSS DISABILITY AND GIVING US A
HINT OF WHAT SHOULD BE SUPPORTED
FOR AUTISTIC PEOPLE, BUT WE
DON'T HAVE RESEARCH LITERATURE
ON THAT PROBABLY BECAUSE OF
BIASES AND PEOPLE ALSO JUST
DON'T KNOW THAT IT'S IMPORTANT
TO ADDRESS AND SO IN TERMS OF
ENSURING AUTISTIC PEOPLE CAN
HAVE THE SUPPORTS NEEDED TO
RAISE FAMILIES AS FOLKS WANT TO,
YOU KNOW, AND BE ABLE TO
PARTICIPATE IN RELATIONSHIPS AND
SOCIAL RELATIONSHIPS AND, YOU
KNOW, IT'S PART OF QUALITY OF
LIFE AND HEALTH AND WELLNESS, IS
THAT HUMANS ARE SOCIAL BEINGS,
AND AUTISTIC PEOPLE OFTEN THRIVE
JUST AS MUCH AS NON-AUTISTIC
PEOPLE BUT MAY NEED SUPPORT AND
SERVICES THAT ARE TAILORED TO BE
ABLE TO HELP FOLKS ACCESS
OPPORTUNITIES FOR SOCIAL LIFE,
INCLUDING, AGAIN, YOU KNOW,
RELATIONSHIPS, FAMILIES, BEING
ABLE TO PARTICIPATE AS A PARENT
AND BE ABLE TO, YOU KNOW,
PARTICIPATE ALSO AS UNCLES,
AUNTS, ET CETERA, IN TERMS OF
IMMEDIATE FAMILY, EXTENDED
FAMILY.
WE HAVE NO RESEARCH LITERATURE
ON THAT EITHER AS HOW AUTISTIC
PEOPLE IN ADULT LIFE CROSS
CONNECT TO THEIR FAMILIES
OVERALL AND HOW IT CAN ENHANCE
THEIR SOCIAL LIFE WITH SUPPORTS
AND THE RICHNESS AS FAR AS
QUALITY OF LIFE.
>> THANK YOU, SCOTT, FOR ALL
THOSE COMMENTS.
VERY HELPFUL.
AND WE'LL TAKE A COMMENT FROM
IVANOVA ?IT.
I'IVANOVA SMITH.
>> THIS IS IVANOVA SMITH.
MY COMMENT IS AROUND JUSTICE.
-- EMERGENCY PREPAREDNESS AND
PREMATURE MORTALITY, AND WHAT
SUPPORTS AND RESEARCH HELPING
AUTISTIC PEOPLE WHO ARE
STRUGGLING WITH THE JUSTICE
SYSTEM, CRIMINAL JUSTICE SYSTEM,
AND SO THEY'RE GETTING A FAIR
TRIAL AND THAT BEING SUPPORTED
IF THEY'RE HAVING TO BE
INCARCERATED.
THANK YOU.
>> THANK YOU VERY MUCH, IVANOVA.
AND I'LL GIVE ONE LAST CLANS TO
ANCHANCE TOANYBODY WHO HAS NOT E
TO SPEAK ON ANYTHING SO FAR TO
QUESTION 6?
>> YES.
>> SO FOR PEOPLE WHO HAVE NOT
SPOKEN SO FAR.
>> YES.
>> WHO'S SPEAKING?
>> HI.
CAN YOU HEAR ME?
CAN YOU HEAR ME NOW?
>> I CAN HEAR YOU.
I THOUGHT YOU HAD GIVEN COMMENTS
ALREADY, BUT GO AHEAD AND THEN
WE'LL GO TO BREAK.
>> I HAVEN'T ON THIS SECTION.
IN FACT, I WAS TRYING TO GET IN
ON THE LAST SECTION.
I'VE HAD TECHNICAL DIFFICULTIES
FOR THE LAST HALF-HOUR.
THERE WERE SEVERAL COMMENTS THAT
I WOULD LIKE TO MAKE.
I APPRECIATE SO VERY MUCH
SCOTT'S INSIGHTS INTO ALL OF
THIS AND SOME OF THE OTHER
COMMENTS.
AND I DO NEED TO TAKE A MOMENT
BECAUSE THIS IS OUR ENTIRE
FIELD, AND WE STARTED IN ON THIS
AREA 15 YEARS AGO, AND SO MANY
OF THE THINGS THAT YOU WERE
MENTIONING HAVE BEEN ONGOING,
INCLUDING THE LACK OF RESEARCH
AND TRYING TO GET DATA.
IT BEEN CHALLENGING, AND I THINK
THIS WOULD BE SOMETHING THAT
OTHERS THAT ARE LIST EN LISTENIO
COULD RELATE TO AS WELL.
IT IS HARD FOR AUTISM
ORGANIZATIONS TO GET FUNDING
BECAUSE THERE'S NOT THE RESEARCH
TO WARRANT GETTING IN AND
GETTING GRANTS.
AND I THINK THAT IS HAMPERING
GREATLY THE THINGS THAT ARE
HAPPENING IN THE LIFESPAN
ISSUES.
IN 21 AND OVER.
AND THAT HAS BEEN OUR TARGET
GROUP FROM THE ONSET.
IN FACT, WE WERE ONE OF THE
FIRST IN THE COUNTRY TO LOOK AT
WHAT WE DEEM AS LIFESPAN, AND
WE'VE LOOKED AT THAT BECAUSE
LIFESPAN AFTER HIGH SCHOOL,
THAT'S WHEN SERVICES END AND
THAT'S THE WAY WE HAD LOOKED AT
IT.
I THINK THERE ARE A NUMBER OF
POINTS.
I WILL CONSOLIDATEBECAUSE THEREL
COMMENTS HERE, AND SCOTT, YOU
HAPPENED TO BRING A LOT OF THESE
THINGS TO THE FOREFRONT.
I THINK FUNDING FOR RESEARCH, SO
WE CAN GET INTO THESE QUESTIONS,
SO WE CAN GET THE SUPPORT, SO WE
CAN GET ADDITIONAL INFORMATION
IS KIND OF A CYCLE IN THERE, BUT
WE NEED TO BREAK THROUGH WITH
THAT.
I THINK THERE'S A NUMBER OF
OTHER THINGS THAT WE CAN WORK
ON, THERE'S A COUPLE OF THINGS
THAT ARE A LITTLE BIT MORE
SUPERFICIAL, ALTHOUGH SCOTT WAS
MENTIONING SOME ASPECTS OF
THINGS WITH TRANSPORTATION.
I DO THINK WE NEED TO ENCOURAGE
PUBLIC SPACES INCLUDING
BUSINESSES TO HAVE BETTER
SIGNAGE THAT IS LESS CONFUSING.
WE'VE WORKED WITH AIRLINES AND
AIRPORTS FOR THIS PARTICULAR
REASON, AND WORKING WITH SOME OF
THE AIRLINES AND HELPING ADULTS
LEARN HOW TO FLY, AND SIGNAGE IS
GOING TO BE VERY IMPORTANT.
I'M JUST HITTING ON A FEW
THINGS.
I THINK THERE IS SOMETHING TOO
THAT HAS COME UP AGAIN AND AGAIN
IN CONVERSATION ABOUT SOME OF
THE SERVICES THAT ARE PROVIDED
WITH GOVERNMENT AGENCIES OR
THROUGH STATES, UTILIZING
DEMEANING LANGUAGE, LIKE VOC
REHAB, WHEN OUR FOLKS ARE BEING
TRAINED AND WORKED WITH IN JOB
READINESS OR IN JOBS, TO ASSUME
THAT THEY NEED TO BE
REHABILITATED AS SOMEONE, THAT
CAME ABOUT BECAUSE OF WAR
INJURIES, AND WE ARE STILL
UTILIZING IT IN MANY SITUATIONS,
AND I THINK IT IS VERY
MISLEADING.
RATHER THAN GIVING EDUCATION AND
GUIDANCE AND WITH THE DIGNITY
THAT COMES ALONG WITH THOSE
TERMINOLOGIES.
AND COMMENTS ON THINGS WITH
AUTISM SPEAKS, I'M GLAD THAT
AUTISM SPEAKS IS COMING ON
BOARD.
BECAUSE WHEN WE TALKED WITH THEM
14 YEARS AGO, THEY DIDN'T WANT
TO HAVE ANYTHING TO DO WITH
ADULTHOOD.
I'M DELIGHTED THEY'RE IN THE
FIELD, BUT WE ALL NEED TO PULL
TOGETHER.
AND IF WE CAN LOOK AT THIS THING
HOLISTICALLY, MAYBE WE CAN GET
THE RESEARCH DONE THAT NEEDS TO
BE DONE TO HELP INDIVIDUALS, AND
TO ALSO GET FUNDING FOR US TO
GET IN DEEPER AND TAKE CARE OF
MANY, MANY OF THE DETAILS THAT
WE WERE TALKING ABOUT TODAY.
AND I KNOW I MADE COMMENTS THAT
THAT WAS -- THE LAST HALF-HOUR,
45 MINUTES TRYING TO GET ON.
>> THANK YOU SO MUCH, JALYNN,
FOR SHARING YOUR COMMENTS.
SO THANK YOU, EVERYONE, FOR THIS
USEFUL DISCUSSION.
VERY HELPFUL TO HEAR ABOUT ALL
OF YOUR COMMENTS.
WE WILL TAKE A 15-MINUTE -- OR
WE'LL TAKE AN 11-MINUTE BREAK
AND COME BACK AT 2:30.
I DON'T WANT TO GIVE SHORT
SHRIFT TO SEX AND GENDER EQUITY
AND DISPARITIES AND COVID, SO
I'LL ASK YOU TO COME BACK AT
2:30.
AND IF YOU NEED A COUPLE OF
EXTRA MINUTES, JUST POP ON
WHETHER YOU CAN AND WE'LL START
DISCUSSING SEX AND GENDER NEXT.
THANK YOU SO MUCH.
>>WELCOME BACK, EVERYONE.
AND WE'RE ON QUESTION 7.
SO WE'LL GO TO QUESTION 7 NEXT.
QUESTION 7 IS RESEARCH
INFRASTRUCTURE AND PREVALENCE.
AND THE PROPOSED QUESTION 7 TEXT
IS, HOW DO WE EXPAND AND ENHANCE
RESEARCH INFRASTRUCTURE SYSTEMS
TO MEET THE NEEDS OF THE AUTISM
COMMUNITY?
AND THE TOPICS THAT ARE INCLUDED
HERE ARE BIOREPOSITORIES.
DATA INFRASTRUCTURE.
THE RESEARCH WORKFORCE.
NOW THE SERVICES WORKFORCE IS IN
QUESTION 5.
SO WE'VE ALREADY COVERED THAT
FOR TODAY.
ALTHOUGH IF YOU HAVE A COMMENT
ABOUT IT, YOU CAN COMMENT ON IT.
AND IN THE RESEARCH WORKFORCE,
THERE ARE MENTIONS ABOUT THE
DIVERSITY OF THE WORKFORCE IN
AUTISTIC RESEARCHERS AMONG OTHER
THINGS.
THE EPIDEMIOLOGICAL DATA
GATHERING SYSTEMS AND SURVEYS
THAT HELP US GAIN DATA ON
AUTISM.
AND THE LIFE COURSE OF PEOPLE ON
THE SPECTRUM.
AND OUTREACH AND DISSEMINATION
OF RESEARCH FINDINGS.
SO THESE ARE SOME OF THE BIGGER
SUBSECTIONS OF THIS QUESTION,
AND AS BEFORE, ARE THERE ANY
OTHER IMPORTANT TOPICS OR POINTS
TO CONSIDER REGARDING RESEARCH
INFRASTRUCTURE AND PREVALENCE
STUDIES, AND HAVE THERE BEEN
SIGNIFICANT CHANGES THAT HAVE
HAPPENED SINCE THE LAST TRA TEE
STRATEGIC PLAN THAT COULD IMPACT
THE DIRECTION OF THIS FIELD?
SO HAPPY TO TAKE SOME COMMENTS
ON THIS.
I'M NOT SEEING ANYTHING SO FAR.
I'LL ASK CDC IF YOU HAVE ANY --
OH, SCOTT HAS A COMMENT, BUT I
WILL ASK CDC, TOO, IF YOU CAN
THINK ABOUT WHETHER YOU HAVE
ANYTHING TO SAY ABOUT PREVALENCE
STUDIES AND ANYTHING THAT WE
NEED TO BE INCLUDING.
BUT FIRST COMMENT TO SCOTT.
>> YES.
SUSAN, THANKS.
I THINK FOR THIS QUESTION 7,
THAT I KNOW SOME OF THIS IS
HISTORY, WHERE THINGS HAVE BEEN
LISTED ON HERE, BUT IF THIS IS
RESEARCH INFRASTRUCTURE AND DATA
INFRASTRUCTURE, MAYBE, I WOULD
PUT THINGS FOR INSTANCE LIKE THE
TISSUE BANKING FARTHER DOWN
BECAUSE THIS TENDS TO MAYBE --
ORIENTED MORE TOWARDS THE
PHYSICAL SCIENCES, WHERE SOCIAL
SCIENTISTS THAT ARE IN DATA
SHARING THEREIN.
I DON'T KNOW WHETHER THERE COULD
BE MORE EXPANDED CONTENT ON
SUPPORTING BETTER COMMUNITIES OF
PRACTICE ON HERE FOR RESEARCHERS
AND RESEARCHERS' CONNECTIONS
WITH PRACTITIONERS AND POLICY
MAKERS.
WE REALLY HAVE A LACK OF THAT IN
AUTISM RESEARCH.
IT'S VERY SILOED AT TIMES AND
SEPARATED, AND I THINK WE NEED
THAT MORE BOTH FOR -- AMONG
RESEARCHERS THEMSELVES SHARING
STUDIES, SHARING FINDINGS,
SHARING APPROACHES AND
STRATEGIES AND CONNECTING
RESEARCHERS WITH PRACTITIONERS
OUT THERE AND SERVICE PROVIDER,
ET CETERA, TO CROSS CONNECT AND
HAVE INFORMATION SHARING SO IT
CAN INFORM WHAT GETS DONE IN
RESEARCH AND BOLST BOLSTER ENTH,
WE'VE BEEN CONSTANTLY TALKING
ABOUT GAPS IN STRATEGIC PLAN FOR
MANY YEARS AND SOME OF THE
DISCUSSION TODAY, YET I THINK WE
HAVE THAT CHALLENGE THAT I THINK
SOMETIMES RESEARCHERS AREN'T
PURSUING THINGS AT TIMES, BOTH
BECAUSE OF MAYBE THERE'S NOT A
LACK OF FUNDING BUT ALSO
SOMETIMES THESE GRANT
OPPORTUNITIES YOU HAVE AT NIH
ARE VERY OPEN, THEY OFFER A LOT
OF FLEXIBILITY ON STUDIES, BUT
SOME RESEARCHERS AWARE OF
ADDRESSING THE GAPS AND I THINK
THAT CONNECTION WITH MORE
COMMUNITIES OF PRACTICE WITH
FELLOW RESEARCHERS AND
PRACTITIONERS AND FRANKLY
AUTISTIC PEOPLE OURSELVES AND
FAMILY MEMBERS, I THINK WOULD BE
HELPFUL, I THINK, FOR ADDRESSING
THAT SPACE.
I KNOW THERE'S A MENTION ALREADY
OF THE COMMUNITY-BASED
PARTICIPATORY RESEARCH, BUT I
THINK IF WE COULD BOLSTER THAT
LANGUAGE A LITTLE BIT MORE TOO
IS WE NEED MORE OF THAT TO
CONNECT BACK OUT IN THE
COMMUNITY.
I THINK HISTORICALLY AND THIS
STILL CONTINUES TO BE THE CASE,
A LOT OF AUTISM RESEARCHES ARE
JUST VERY DISCONNECTED FROM
STAKEHOLDERS OUT THERE AND NOT
AS WELL INFORMED, I THINK,
ESPECIALLY BY AUTISTIC PEOPLE
OURSELVES AS FAR AS WHAT SHOULD
BE DRIVEN ON RESEARCH
PRIORITIES, YOU KNOW, OUT THERE.
ONE QUICK THING AND THEN I'LL
THROW IT BACK TO I THINK IT WAS
JENNIFER, I KNOW YOU HAVE OTHER
HANDS TO GO TO, IS THE -- I
THINK -- I DON'T KNOW WHETHER
IT'S -- THIS QUESTION COULD
AGAIN BE PUT IN THERE, IS THAT
IT'S BEEN A NEED FOR A REALLY
LONG TIME TO HAVE NEEDS
ASSESSMENTS AND PREVALENCE IN
TERMS OF WHAT IT LOOKS LIKE, THE
SPACE FOR OLDER ADOLESCENTS AND
ADULTS.
I KNOW THAT LIKE THE SEED
PROJECT, ET CETERA, THAT YOU
HAVE AT HHS IN TERMS OF CDC AND
OTHER AREAS HAVE BEEN STARTING
TO GET INTO ADOLESCENTS' LIFE
BUT I THINK WE NEED A LOT MORE
OF THAT IN ADULT LIFE.
THEY TEND TO BE OFTEN LIMITED
HISTORICALLY TO KIDS, AGAIN THIS
IS THE PETER PAN PHENOMENON,
THAT THIS QUESTION SHOULD BE
ADDRESSING RESEARCH
INFRASTRUCTURE ACROSS THE
LIFESPAN HONESTLY AND THE GAP
EXISTS MOSTLY FOR ADULTS AS FAR
AS GETTING DATA ON WHERE THE
NEEDS AND GAPS ARE, AND WE'VE
HAD A BETTER PROGRESS FOR THAT
INTERNATIONALLY, AND WE'RE
REALLY FAR BEHIND HERE IN THE
UNITED STATES AND WE SHOULD BE
LOOKING TO OUR COLLABORATORS AND
INTERNATIONALLY AND OTHER
COUNTRIES TO SEE WHERE THEY'VE
MADE PROGRESS ON THIS AND WHAT
WE SHOULD BE DOING HERE IN THE
UNITED STATES TO FRANKLY CATCH
UP, BECAUSE I THINK IT IS REALLY
HINDERING US AS FAR AS MAKING
PROGRESS ON THESE AREAS BY NOT
HAVING AS MUCH PRIORITY ON
RESEARCH INFRASTRUCTURE THAT HAS
A GREATER FOCUS ON ADULTS AND
OLDER ADOLESCENTS.
WE NEED EXTENSIVELY MORE
COMMITMENT THERE, AND I THINK
IT'S SOMETHING THAT SHOULD BE
ADDRESSED MORE IN LANGUAGE IN
THIS SECTION, WHICH IS
HISTORICALLY NOT BEEN PRIORITY
TO THE SECTION BECAUSE OF THE
ADULT FOCUS IN Q6, EVEN THOUGH
THIS RESEARCH INFRASTRUCTURE
SHOULD APPLY TO RESEARCH ON
AUTISM ACROSS THE LIFE COURSE,
WITH PRIORITIES UNDER THE AUTISM
CARES ACT AND QUALITY OF LIFE
ACROSS THE LIFESPAN.
>> THANK YOU, SCOTT.
AND THOSE ARE GOOD COMMENTS.
WITH THE HISTORY OF THIS SECTION
TO WHEN WE STARTED OUT WITH THIS
PLAN IN 2009, SOME OF THE TISSUE
BANKING AND SO FORTH WAS NEW AND
SO THERE WAS A LOT OF INTEREST
IN GETTING THAT UP AND RUNNING
BUT NOW IT IS UP AND RUNNING, SO
IT SEEMS LIKE THERE IS MORE
EMPHASIS ON THE CONNECTIONS
BETWEEN RESEARCHERS AND HOW WE
CAN REALLY SUPPORT THE RESEARCH
COMMUNITY HOLISTICALLY.
SO APPRECIATE THAT.
NEXT WE'LL TAKE A COMMENT FROM
JENNIFER JOHNSON.
>> ARE YOU ABLE --
>> JUST HEARD YOU.
>> CAN YOU HEAR ME?
OKAY.
I'M HAVING A HARD TIME FIGURING
OUT THIS AUDIO HERE.
SO JUST A COUPLE THINGS.
I THINK THAT HAVE DEVELOPED
SINCE WE LAST UPDATED THE
STRATEGIC PLAN.
UNDER THE PATIENT-CENTERED
OUTCOMES RESEARCH AUTHORIZATION,
THE LAST THREE AUTHORIZATIONS
IDENTIFIED THE -- FOR RESEARCH
AUTHORIZED UNDER THAT ACT.
ALTHOUGH OBVIOUSLY IT DOESN'T
POINT OUT OR CALL OUT
SPECIFICALLY AUTISM, GIVEN THAT
IDDD IS THE POPULATION THAT'S
IDENTIFIED IN MANY PEOPLE WHO
ARE YO AUTISTIC FALL WITHIN THAT
CATEGORY, THAT MIGHT BE
SOMETHING TO REFERENCE OR
HIGHLIGHT AS A POTENTIAL
RESOURCE FOR BUILDING MORE
INFRASTRUCTURE AND GENERATING
SOME RESEARCH ON INDIVIDUALS
WITH AUTISM.
THE OTHER THING I WAS GOING TO
MENTION HERE IS AS IT RELATES TO
COVID, AND I'M ACTUALLY KIND OF
SURPRISED THAT COVID HASN'T COME
UP MORE FREQUENTLY IN OUR
CONVERSATION TODAY, BUT WE
CERTAINLY KNOW FROM COVID THAT
WE DIDN'T HAVE GOOD DATA ON
PEOPLE WITH DISABILITIES IN
GENERAL, BUT AUTISTIC
INDIVIDUALS, AND OBVIOUSLY
THERE'S A LOT OF RESEARCH THAT
NEEDS TO BE DONE TO UNDERSTAND
THE IMPACT OF COVID ON AUTISTIC
INDIVIDUALS AND MANY DIFFERENT
WAYS.
ON THEIR HEALTH, THEIR MENTAL
HEALTH, DOES IT IMPACT THEM
DIFFERENTLY, BOTH PHYSICALLY AND
JUST IN TERMS OF -- WE KNOW IN
TERMS OF COMMUNITY LIVING AND
JUST LIFE IN GENERAL, BUT WE
NEED TO KIND OF BE LOOKING AT,
AGAIN, THE IMPACT OF COVID AND
WHAT RESEARCH WE'RE SUPPORTING
THERE, BUT ALSO WE SAW IN THE
PANDEMIC THAT WE DIDN'T HAVE THE
DATA TO KNOW WHAT WAS HAPPENING
TO PEOPLE WITH DISABILITIES,
INCLUDING AUTISTIC INDIVIDUALS.
SO JUST REINFORCING THE NEED FOR
MORE OF THAT ADMINISTRATIVE TYPE
OF DATA, BEING ABLE TO IDENTIFY
PEOPLE WITH AUTISM IN DATASETS
AND BEING ABLE TO USE THAT TO
BETTER UNDERSTAND THEIR
OUTCOMES.
>> THANK YOU, JENNIFER, FOR
THOSE COMMENTS.
AND WE DO HAVE A SECTION ON
COVID THAT WE'RE GOING TO BE
TALKING ABOUT SOON, SO WE CAN
REVISIT THAT WHEN WE GET THERE.
BUT APPRECIATE ALL OF THAT.
SO THANK YOU.
NEXT WE'LL TAKE A COMMENT FROM
JOE PIVEN.
>> THANK YOU, SUSAN.
I SEE THE BULLET FOR RESEARCH
WORKFORCE HIGHLIGHTS DIVERSITY
AND AUTISTIC RESEARCHERS.
AND I DON'T KNOW IF -- I DON'T
WANT TO DETRACT FROM THAT, BUT I
THINK WE NEED MORE EMPHASIS ON
DEVELOPING THE RESEARCH
WORKFORCE.
AND I SAY THAT IN PART
ANECDOTALLY BASED ON MY POSITION
AS DIRECTING A POSTDOCTORAL
RESEARCH TRAINING -- AN NIH
T32 OVER THE LAST 20 YEARS.
AND WE'VE ALWAYS HAD A LOT OF
APPLICANTS AND THE FIELD HAS
BEEN KIND OF BURGEONING.
OVER THE LAST CYCLE, I THINK WE
AND OTHER PEOPLE AROUND THE
COUNTRY HAVE JUST EXPERIENCED A
DRAMATIC INCREASE IN APPLICANTS.
THERE ARE A LOT OF PEOPLE GO
INTO INDUSTRY AND OUT INTO THE
CLINICAL WORLD AND NOT GOING
INTO RESEARCH FOR A VARIETY OF
REASONS.
AND I THINK THIS IS A PLACE
WHERE WE SHOULDN'T -- BE
EMPHASIZING NOVEL APPROACHES TO
TRAINING AND JUST BOLSTERING
TRAINING IN GENERAL.
I THINK THE OTHER PIECE OF THIS
IS THAT WE TALK A LOT ABOUT
TRANSLATIONAL AND
INTERDISCIPLINARY RESEARCH, BUT
IN POINT OF FACT, DOING THAT,
PULLING THAT OFF, GETTING
FUNDED, GETTING TRAINING IN THAT
AREA IS REALLY DIFFICULT, REALLY
A CHALLENGE.
AND I THINK WE NEED TO THINK
ABOUT NOVEL WAYS TO TRAIN OUR
YOUNG RESEARCHERS THAT CROSS
DISCIPLINARY BOUNDARIES, THAT
CROSS INSTITUTIONS, AND REALLY
JUST KIND OF WORK MORE CREATIVE
WAYS TO DO THIS.
SO THAT'S JUST MY PLAN FOR
EXPANDING THAT RESEARCH
WORKFORCE.
>> THANK YOU.
SO THE CHAPTER WAS REDUCED TO A
SLIDE, SO IT'S CERTAINLY NOT
EVERYTHING, BUT DIVERSITY IN
AUTISTIC RESEARCHERS ARE IN YOU
THINGS THAT CAME UP WITH
RESEARCH WORKFORCE.
OF COURSE EXPANDING THE RESEARCH
WORKFORCE AND SUPPORTING IT HAS
ALWAYS BEEN A PART OF THE
STRATEGIC PLAN.
BUT PLEES APPRECIATE THAT.
AND IF YOU HAVE ANY SUGGESTIONS
ON WHAT KINDS OF THINGS WOULD BE
CREATIVE NEW WAYS TO INSPIRE
PEOPLE TO JOIN THE FIELD OR STAY
IN THE FIELD, THINGS THAT COULD
REALLY HELP PEOPLE, PLEASE EMAIL
US IF YOU HAVE THOUGHTS ABOUT
THINGS THAT COULD BE MENTIONED.
AND NEXT WE'LL GO TO MATTHEW
SIEGEL, ALTHOUGH YOUR NAME ON
SCREEN IS KAREN VINCENT.
>> THANK YOU, SUSAN.
I AM STILL MATTHEW SIEGEL.
SO I WOULD LIKE TO SUGGEST WE
COULD ADD A BULLET UNDER THIS
BECAUSE IT IS PART OF RESEARCH
INFRASTRUCTURE, I BELIEVE, WHICH
IS RESEARCH ACCESS.
AND WHAT I'M THINKING ABOUT
THERE IS TWO PIECES.
ONE IS ACCESSIBILITY FOR THE
GENERAL AUTISM POPULATION,
MAKING RESEARCH OPPORTUNITIES
KNOWN TO PEOPLE SUCH AS
INNOVATIVE THINGS LIKE THE IAN
PLATFORM AND SOME OF THE WORK
SAFARI HAS DONE IN CREATING
ACCESS TO RESEARCH STUDIES, AND
JUST AS IMPORTANTLY, A SECOND
PART IS FACILITATING ACCESS TO
RESEARCH FOR PEOPLE WHO HAVE
HIGH SUPPORT NEEDS, WHETHER THAT
IS PEOPLE WHO HAVE
INTELLECTUAL -- PEOPLE WITH
AUTISM WHO HAVE INTELLECTUAL
DISABILITY, HIGH SENSORY ISSUES,
INTERFERING OR SEVERE BEHAVIOR
SUCH AS SELF-INJURY OR
AGGRESSION, WHO STILL NEED AND
DESERVE STUDY AND RESEARCH AND
YET THE VERY THINGS THAT THEY
NEED RESEARCHED CAN PREVENT THEM
FROM ACCESSING RESEARCH STUDIES,
AND OF COURSE A KEY REFERENCE ON
THIS IS ALYCIA HALLADAY AND
OTHERS PUBLISHED AN ARTICLE, I
BELIEVE LAST YEAR, ON WAYS TO
INCREASE ACCESS TO RESEARCH FOR
INDIVIDUALS WITH AUTISM WHO HAVE
HIGH SUPPORT NEEDS OR FIT INTO
THESE OTHER AREAS OF THE
SPECTRUM THAT I'VE MENTIONED.
SO THANK YOU.
>> THANK YOU, MATTHEW, AND THOSE
THINGS DO FIT IN, SO WHAT YOU'RE
CALLING ACCESS IS WHAT WE'VE
INCLUDED UNDER DISSEMINATION,
BUT WE COULD USE OTHER
TERMINOLOGY THERE AS WELL.
IN TERMS OF INCLUSION OF PEOPLE
WITH HIGH SUPPORT NEEDS IN
RESEARCH, I THINK THAT WE HAVE
THAT IN THE UPCOMING EQUITY AND
DISPARITIES SECTION, BUT WE CAN
ALWAYS PUT IT IN MORE THAN ONE
PLACE AS WELL AS WE'VE
RECOGNIZED THAT'S COME UP A FEW
TIMES IN OUR CONVERSATION.
SO THANK YOU.
PAUL WANG?
>> THANK YOU, SUSAN.
I WANTED TO SPEAK TO THE SECOND
BULLET, DATA INFRASTRUCTURE
POINT.
IT'S FANTASTIC, I THINK, THAT
NIH HAS CREATED AND MAINTAINS
ENDAR, THE DATABASE WHERE I
THINK ALL FEDERALLY FUNDED
RESEARCHERS ARE MANDATED TO
DEPOSIT THEIR RESEARCH DATA
FINDINGS SO THAT THEY CAN BE
USED AS SECONDARY SOURCES FOR
FUTURE RESEARCHERS WHO MIGHT
WANT TO ACCESS THAT.
HERE, THOUGH, I WANT TO CONVEY
SECONDHAND COMMENTS BECAUSE I
DON'T HAVE FIRSTHAND EXPERIENCE
IN PULLING DATA FROM ENDAR.
I'VE HEARD FROM MANY, MANY
RESEARCHERS THAT IT IS VERY
DIFFICULT, TOO DIFFICULT, TO GET
DATA OUT OF ENDAR.
OTHERS WHO ARE ON THIS CALL MAY
BE ABLE TO SPEAK TO THIS FROM
FIRSTHAND EXPERIENCE, BUT I
THINK IT'S IMPERATIVE THAT WE
MAKE THIS RESOURCE AS EASILY
ACCESSIBLE AS POSSIBLE SO THAT
ITS FULL VALUE CAN BE REALIZED.
AGAIN, IT'S FANTASTIC THAT IT
EXISTS, THAT RESEARCHERS ARE
REQUIRED TO PUT THEIR DATA IN
THERE.
LET'S MAKE SURE THAT THE DATA
CAN BE USED BY OTHER RESEARCHERS
RATHER THAN COMING IN AND NEVER
GOING OUT.
>> THANK YOU AND WE'LL BE SURE
TO PASS THAT ON TO STAFF AT NIMH
INVOLVED IN THAT SYSTEM TO ASK
THEM ABOUT ACCESSIBILITY.
DO YOU HAVE ANY COMMENTS, PAUL,
IN TERMS OF WHAT ARE THE NEWER
FRONTIERS THAT WE NEED TO BE
ADDRESSING IN TERMS OF SOME OF
THIS TYPE OF INFRASTRUCTURE FOR
RESEARCHERS?
AS I KNOW SIMONS HAS BEEN
INVOLVED A LOT IN CREATING
INFRASTRUCTURE AS WELL.
>> YEAH, SOME OF THE OTHER
SPEAKERS HAVE ALREADY TOUCHED ON
THAT ISSUE.
THE LAST COMMENT FROM DR. SIEGEL
ABOUT MAKING SURE THAT THE
INDIVIDUALS WITH AUTISM WHO HAVE
HIGH SUPPORT NEEDS CAN
PARTICIPATE IN RESEARCH, THAT
RESEARCHERS CAN FIND THEM AND
RECRUIT THEM WITHOUT EXCESSIVE
BARRIERS.
IT'S IMPORTANT TO INCLUDE THAT
POPULATION IN RESEARCH.
THERE ARE, OF COURSE, MORE AND
MORE DIFFERENT TYPES OF DATA
THAT ARE BEING GENERATED
SOMETIMES IN ENORMOUS VOLUME.
OBVIOUSLY THERE'S WHAT WE THINK
OF AS COGNITIVE BEHAVIORAL OR
OTHER KINDS OF PHENOTYPIC --
DATA.
THERE'S VOLUMINOUS DATA, SO
THERE ARE MANY DIFFERENT DATA
TYPES AND I THINK THERE'S GOING
TO BE GREAT POTENTIAL IN LOOKING
ACROSS THESE DATA TYPES.
SO WE JUST HAVE TO MAKE SURE
THAT THE ABILITY TO DO THAT IS
THERE.
>> THANK YOU.
DO YOU SEE ANY FURTHER NEEDS FOR
LINKING ANY OF THESE DATASETS OR
ANYTHING ELSE THAT WE WOULD WANT
TO MENTION IN THE PLAN?
WE HAVE SEVERAL THINGS IN PLACE
NOW.
>> YEAH, I'M SORRY THAT I DON'T
HAVE THE EXPERTISE TO COMMENT
REALLY SPECIFICALLY ON THAT, BUT
FOR SURE, WE WANT TO BE ABLE TO
LINK ACROSS THOSE DIFFERENT DATA
TYPES.
WHILE OF COURSE RESPECTING
SUBJECT PRIVACY
CONFIDENTIALALITY ISSUES, THAT'S
PARAMOUNT, BUT WHEN SUBJECTS
CONSENT OR WHEN IT'S POSSIBLE TO
DO THAT KIND OF LINKAGE WHILE
PRESERVING PRIVACY IS AN
ABSOLUTE MUST.
>> GREAT.
THANK YOU.
AND WE WILL CONSULT WITH SOME OF
THE EXPERTS WE KNOW IN THAT AREA
TOO TO MAKE SURE THAT WE INCLUDE
WHATEVER IS THE LATEST THERE.
SO THANK YOU.
NEXT WE'LL GO TO DENA GASSNER.
>> THANKS, SUSAN.
I'M GRATEFUL THAT DR. PIVEN
BROUGHT UP, YOU KNOW, INCREASING
THE RESEARCH COMMUNITY.
I WANTED TO MENTION AS A SUBSET
TO THAT, THE LACK OF WORKPLACE
ACCOMMODATIONS FOR AUTISTIC
RESEARCHERS AND OTHER DISABLED
RESEARCHERS.
ESPECIALLY AROUND THE
GATE-KEEPING IN TERMS OF LIKE
ENTRANCE EXAMS OR INTERVIEWS,
THINGS THAT ARE NOT GOING TO
DEMONSTRATE OUR RELATIVE
STRENGTHS, AND ALSO THE
INORDINATELY HIGH NUMBER OF
HOURS A COMPETITIVE RESEARCHER
IS EXPECTED TO PUT IN.
ALSO THERE'S A LOT OF PRIVILEGE
INVOLVED WITH WHO GETS
INTERNSHIPS IN POSTDOC SETTINGS
AND LOW WAGES IN REGARD TO THAT.
SO I DID WANT TO BRING THAT UP,
AND I ALSO WANTED TO MENTION
HERE, AGAIN, UNDER
EPIDEMIOLOGICAL GATHERING, THE
504 DATA THAT'S BEING MISSED.
AND LASTLY, I WANTED TO TALK
ABOUT THE INACCESSIBILITY OF
RESEARCH DATA WITH SOCIAL
SECURITY.
MY DISSERTATION IS ON A SOCIAL
SECURITY TOPIC.
I SUBMITTED A REQUEST FOR
SPECIFIC INFORMATION.
IT WAS DENIED AS NOT BEING
BENEFICIAL TO THE DEPARTMENT,
AND SO IN ADDITION TO MY $30,000
A YEAR IN TUITION, THEY WANTED
ME TO PAY THEM NEARLY A THOUSAND
DOLLARS FOR THE DATA THAT I WAS
REQUESTING.
I SUBMITTED AN APPEAL FOR THAT,
ARTICULATED SOME OF THE BARRIERS
THAT WERE UNIQUE TO MY
SITUATION, INCLUDING BEING ON
SOCIAL SECURITY MYSELF, AND WAS
DENIED AGAIN.
AND SO WE'RE NOT REALLY GOING TO
BE ABLE TO DETERMINE THE
OUTCOMES PEOPLE ARE EXPERIENCING
IN ANY OTHER WAY BUT QUALITATIVE
RESEARCH, AS LONG AS WE DON'T
HAVE THE FUNDING OR THE ACCESS
TO SOCIAL SECURITY DATA.
SO I'M HOPING WE CAN DO
SOMETHING IN TERMS OF IMPROVING
THAT ACCESS.
>> THANK YOU FOR THOSE COMMENTS,
DENA.
WE APPRECIATE THAT.
SO WE'LL GO TO STEVEN ISAACSON
NEXT FOR COMMENTS THAT MAY HAVE
BEEN WRITTEN IN.
>> HI THERE.
I HAVE TWO COMMENTS.
ONE FROM YETTA MYRICK AND OTHERS
FROM -- THE FIRST ONE IS FROM
YETTA.
I LOVE THE IDEA OF COMMUNITY OF
PRACTICE. I WOULD LIKE TO SEE
NOT ONLY RESEARCHERS BUT OTHER
STAKEHOLDERS, SPECIFICALLY
AUTISTIC INDIVIDUALS, FAMILY
MEMBERS, AND COMMUNITY
PROVIDERS.
WE NEED TO BRIDGE GAPS.
ADDITIONALLY, I WOULD LIKE TO
SEE EVERY STATE AND TERRITORY TO
HAVE ACCESS TO FUNDING TO FIGURE
OUT PREVALENCE DATA ACROSS THE
LIFESPAN.
WE ARE TRYING TO FIGURE THIS OUT
IN D.C. .
IT IS A CHALLENGE DUE TO LACK OF
FUNDING.
AND THERE'S A COMMENT OR A
QUESTION FROM JENNY.
FOR OBJECTIVE 3, STRENGTHENING
STATISTICAL DATA GATHERING
SYSTEMS TO ADVANCE UNDERSTANDING
OF THE AUTISTIC POPULATION WHILE
ALLOWING COMPARISONS AND
LINKAGES ACROSS SYSTEMS AS MUCH
AS POSSIBLE.
THE QUESTION IS, CAN WE SPELL
OUT WHAT WE MEAN BY DIVERSE
SAMPLES?
>> SO TO ANSWER THAT QUESTION,
WITH THE OBJECTIVES OR
RECOMMENDATIONS AS THEY'RE
WORDED, WE'RE TRYING TO BE BRIEF
BECAUSE IF THEY'RE VERY LENGTHY,
IT'S GOING TO BE HARD FOR PEOPLE
TO UNDERSTAND THEM.
SO IN THE TEXT, IT SHOULD BE
CLEAR WHAT WE'RE TALKING ABOUT
WHEN WE'RE TALKING ABOUT
INCLUDING PEOPLE WITH A LOT OF
DIFFERENT DIVERSE BACKGROUNDS
AND SAMPLES, WE ALL ARE AWARE
THAT SAMPLES HISTORICALLY HAVE
NOT BEEN ALL THAT DIVERSE IN
TERMS OF GENDER, RACE, ETHNICITY
AND A LOT OF OTHER FACTORS, SO
THAT'S WHAT WE'RE TALKING ABOUT,
BUT WE PROBABLY WON'T WANT TO
LINK THE OBJECTIVE ITSELF, BUT
WE CAN INCLUDE SOMETHING IN THE
CHAPTER THAT WILL MAKE IT CLEAR
THAT THAT'S WHAT WE'RE TALKING
ABOUT.
JUST TO KEEP THINGS CLEAR AND
EASY TO READ.
>> SUSAN, A SECOND ONE FROM
JENNY.
UNDER THE OBJECTIVE 2, EXPANDING
AND ENHANCING THE RESEARCH
WORKFORCE, WITH ATTENTION TO
DIVERSITY AND INCLUSION AND
ACCELERATE THE PIPELINE FROM
RESEARCH TO PRACTICE, THE
QUESTION IS, WOULD WE BE ABLE TO
INCLUDE INTERDISCIPLINARY AND
TRANSDISCIPLINARY RESEARCH,
ESPECIALLY FOR THOSE WHO ARE
SWITCHING INTO AUTISM RESEARCH
FROM A DIFFERENT DISCIPLINE?
FOR EXAMPLE, THOSE WHO COME FROM
COMMUNITIES, ARTS, LINGUISTICS.
AS AN EARLY CAREER RESEARCHER, I
FIND IT A BIT DIFFICULT TO FIND
WHERE I FIT WHEN APPLYING FOR
JOB/FUNDING AS AN
INTERDISCIPLINARY AUTISTIC
RESEARCHER.
>> THANK YOU.
THAT ACTUALLY WAS IN A PREVIOUS
STRATEGIC PLAN SO THAT IS
SOMETHING THAT HAS BEEN THERE.
THEY WANTED TO ENCOURAGE PEOPLE
TO JOIN FROM OTHER FIELDS, AND
TO DO INTERDISCIPLINARY WORK AND
CERTAINLY WE'LL INCLUDE THAT IN
THE CHAPTER.
WE MIGHT NOT BE ABLE TO INCLUDE
ALL THE WORDS IN THE EXACT
RECOMMENDATION BECAUSE IT WOULD
BECOME TOO LONG, BUT IT'S AN
IMPORTANT POINT, AND THERE ARE A
LOT OF PEOPLE IN THE AUTISM
FIELD THAT DO CROSS DISCIPLINES,
AND THAT'S A REALLY VALUABLE
FEATURE IN THIS FIELD, SO WE
WANT TO ENCOURAGE PEOPLE TO DO
THAT.
SO THANK YOU.
JOE PIVEN.
>> OKAY.
I JUST WANTED TO ECHO, AND MAYBE
BUILD ON WHAT PAUL WANG JUST
SAID, WHICH I THOUGHT WAS A
REALLY GREAT POINT.
FRANKLY I'VE THOUGHT ABOUT THIS
FOR MANY YEARS AND I'D SORT OF
FORGOTTEN ABOUT IT.
I WANT TO WEIGH IN AS SOMEONE
WHO HAS FIRSTHAND KNOWLEDGE
ABOUT ENDAR.
YOU KNOW, THIS IS AN INCREDIBLE
RESOURCE, AND A HUGE INVESTMENT.
IT HAS REMARKABLE POTENTIAL, BUT
THERE'S BEEN REMARKABLY LITTLE
PRODUCTIVITY THAT'S COME OUT OF
THIS.
I THINK IT'S AN ISSUE.
I'M NOT SURE IF THIS IS THE
FORUM TO DISCUSS THIS.
IT'S A VERY COMPLICATED ISSUE.
BUT SINCE IT'S BEEN RAISED, I
JUST WANTED TO SAY FIRST THAT I
KIND OF RESONATE WITH WHAT PAUL
IS SAYING.
IF THERE IS A ROLE FOR THIS
STRATEGIC PLAN TO COMMENT ON
THIS, I THINK IT'S A GOOD IDEA
IF WE CAN DO IT IN A WAY THAT'S
SORT OF APPROPRIATE AND
CONSTRUCTIVE.
I THINK THERE IS A ROLE FOR
RE-THINKING AND RE-ASSESSING
WHAT IS HAPPENING WITH ENDAR,
BECAUSE OF THESE OBSERVATIONS
THAT WE'RE ALL HAVING.
THIS HAS BEEN MANY YEARS, IT'S
NOT A SHORT-TERM EXPERIENCE.
SO ANYWAY, I JUST THOUGHT I
SHOULD WEIGH IN AND SAY
SOMETHING ABOUT THAT.
>> THANK YOU, JOE.
WE PROBABLY WON'T BE ABLE TO GET
INTO A LOT OF SPECIFICS ABOUT
ANY ONE RESOURCE, BUT THERE ARE
PROBABLY GENERAL RECOMMENDATIONS
THAT WE CAN A MAKE.
FOR EXAMPLE, TALKING ABOUT
INCREASING ACCESSIBILITY TO
RESEARCHERS THAT PROBABLY APPLY
TO MULTIPLE DIFFERENT RESOURCES
THAT ARE OUT THERE, BUT IF YOU
HAVE VERY SPECIFIC COMMENTS TO
SHARE WITH ENDAR, PROBABLY IT
MIGHT BE BEST TO CONTACT NIMH
AND WE CAN CONNECT YOU WITH THE
PEOPLE THAT MANAGE ENDAR.
SO THANK YOU.
JALYNN PRINCE.
>> THANK YOU.
I HAVE BEEN LED TO BELIEVE BY
SEVERAL DIFFERENT SOURCES THAT
WORKING WITH -- OR THE CDC HAS
MORE OF A MANDATE TO LOOK AT
RESOURCES OR LOOK AT RESEARCH
DIRECTED TOWARD CHILDREN THAN TO
ADULTS.
IF THAT IS THE CASE, DO WE NEED
TO MAKE A RECOMMENDATION OR DO
WE AS INDIVIDUALS NEED TO MAKE
CERTAIN THAT WE COULD GET
LANGUAGE INTO CONGRESS THAT
WOULD OPEN THE DOOR FOR GREATER
RESEARCH FOR ADULTS AND ADULT
ISSUES AND PREVALENCE OUT OF THE
CDC?
BECAUSE AS I UNDERSTAND IT, THE
RESEARCH ABOUT ADULTS AS FAR AS
PREVALENCE GOES, THAT THE CDC
HAD BEEN ABLE TO GET IN ON WAS
NOT NECESSARILY PRIMARY SOURCES,
BUT IT WAS COMPILED BY OTHER
SOURCES TO GET AN ESTIMATE OF
THE PREVALENCE OUT THERE.
SO ARE THERE ACTIONS THAT EITHER
WE CAN RECOMMEND IN A STRATEGIC
PLAN OR THAT WE SHOULD MAYBE
LOOK AT WITHIN OUR CONGRESSIONAL
OR LEGISLATIVE DISTRICTS?
>> THANK YOU, JALYNN.
I'LL GIVE STEWART THE FLOOR IN
CASE HE HAS SOME COMMENTS FROM
CDC ABOUT THAT.
>> GREAT.
THANK YOU VERY MUCH, SUSAN.
SO I DON'T KNOW THE EXACT
LANGUAGE IN THE APPROPRIATIONS
WITH REGARD TO WHAT CDC IS BEING
DIRECTED TO DO, WHETHER IT
SPECIFIES CHILDREN.
I KNOW THAT CDC IS MOVING
TOWARDS DOING MORE ACTIVITIES IN
THE ADULT LANE FOR BOTH SEED,
WITH THE RESEARCH STUDY, TO
UNDERSTAND ASPECTS OF AUTISM,
BOTH IN RISKS FOR AUTISM IN THE
GENETIC AS WELL AS THE
NON-GENETIC AREAS, AND ALSO IN
THE PREVALENCE MONITORING THAT'S
DONE THROUGH THE ADAM NETWORK,
SO BOTH OF THESE ARE EXPANDING
INTO THE ADOLESCENT AND ADULT
LANES AND WE WOULDN'T BE ABLE TO
DO THAT IF SPECIFICALLY IT SAID
IN THE APPROPRIATIONS THAT WE
COULD ONLY RESTRICT OUR WORK TO
CHILDREN.
SO I WOULD BE SURPRISED IF THERE
WAS SUCH SPECIFICITY THAT
RESTRICTED THE WORK TO THE
CHILDHOOD LANE, BUT WE CAN LOOK
INTO THAT FURTHER.
SUSAN HAD BROUGHT UP EARLIER
THAT I MAY HAVE THOUGHTS ON THE
SECTION ON PREVALENCE MONITORING
IN THE STRATEGIC PLAN.
I THINK IT'S VERY WELL WRITTEN.
IT LAYS OUT THE AREAS WHERE
PREVALENCE MONITORING HAS BEEN
OCCURRING SUCH AS IN OBTAINING
SURVEY DATA, OBTAINING
ADMINISTRATIVE PREVALENCE USING
SUCH DATASETS AS HEALTHCARE
CLAIMS DATA, OR ACTIVE
MONITORING THROUGH DIRECT
EXAMINATION OF INDIVIDUALS AND
DETERMINING -- INCLUDING THEM IF
THEY HAVE THE AUTISM SPECTRUM
DISORDER DIAGNOSIS.
THE SECTION VERY WELL LAYS OUT
SOME OF THE LIMITATIONS WITH
VARIOUS APPROACHES TO OBTAINING
A PREVALENCE VALUE INCLUDING
UNCERTAINTY OF THE DIAGNOSIS,
WHETHER THE APPROACH CAN PROVIDE
A REGIONAL OR NATIONAL
REPRESENTATIVE NUMBER, THE
PARTICIPATION IN VARIOUS
APPROACHES AS WELL AS THE COSTS
OF VARIOUS APPROACHES.
AND I THINK THAT IT -- IN
THINKING ABOUT VARIOUS
APPROACHES, IT'S ALSO IMPORTANT
TO REALIZE THAT THE NUMBER OR
THE PREVALENCE NUMBER IS ONLY --
IS IMPORTANT, BUT IT'S ONLY
PARTLY HELPFUL IN -- FOR THE
AUTISM COMMUNITY BECAUSE WHAT
REALLY IS IMPORTANT TO KNOW ARE
THE NEEDS AND THE
CHARACTERISTICS OF PEOPLE WITH
AUTISM IN THE GENERAL COMMUNITY
AND ARE THOSE NEEDS BEING
FULFILLED.
SO CERTAIN PREVALENCE MONITORING
APPROACHES DON'T NECESSARILY GET
AT THOSE QUESTIONS, SO THAT
NEEDS TO BE CONSIDERED IN
DEVELOPING PREVALENCE MONITORING
APPROACHES.
BUT I THINK WHAT SHOULD BE ADDED
TO THE PREVALENCE MONITORING
SECTION FOCUSES ON THE WAY THAT
DATA ARE OBTAINED BECAUSE -- NOT
ONLY OBTAIN AND EVALUATED
BECAUSE THAT'S BEEN CHANGING
WITH TIME, THAT THERE HAVE BEEN
MUCH MORE OF A FOCUS ON BIG DATA
AND DATA LINKAGES, AND IT'S
THROUGH THESE TYPES OF
APPROACHES THAT MORE INFORMATION
THAT CAN BE USEFUL FOR
PREVALENCE MONITORING CAN BE
COLLECTED AND SO SUBSEQUENTLY
DATA SCIENCE APPROACHES TO
EVALUATE WAYS TO IMPROVE ON THE
QUALITY OF THE DATA AND THE
INFORMATION WITHIN THE DATA ARE
IMPORTANT TO CONSIDER TO OBTAIN
A PREVALENCE NUMBER IN A TIMELY
AND EFFICIENT AND A VALID
FASHION.
SO I THINK THE MAIN POINT IS
THAT THERE ARE CURRENTLY A
NUMBER OF APPROACHES THAT HAVE
BEEN USED TO OBTAIN A PREVALENCE
NUMBER, BUT DATA ARE CHANGING,
AND THE WAY DATA ARE OBTAINED
AND THE WAY DATA ARE EVALUATED,
SO SOME CONSIDERATIONS TO THESE
CHANGES IN THE ENVIRONMENT AND
HOW DATA SCIENCE CAN HELP
IMPROVE PREVALENCE ESTIMATES AND
THE TIMELY AND EFFICIENT MANNER
OF OBTAINING THOSE PREVALENCE
ESTIMATES, AND ALSO OBTAINING
MORE THAN JUST A NUMBER.
LEARNING MORE ABOUT THE NEEDS OF
INDIVIDUALS IN THEIR COMMUNITIES
AND HOW THEIR NEEDS CAN WE BESTE
ADDRESSED SHOULD BE A CRITICAL
COMPONENT OF OBTAINING THE
PREVALENCE.
>> THANK YOU SO MUCH, STUART,
FOR THOSE COMMENTS.
THAT WILL BE VERY HELPFUL TO US
AS WE REFINE THAT SECTION OF
THIS QUESTION.
AND I WILL GIVE THE LAST COMMENT
ON QUESTION 7 TO JOE PIVEN.
>> I'M SORRY, I FORGOT TO LOWER
MY HAND.
MY APOLOGIES.
>> THAT'S NOT A PROBLEM.
OKAY.
SO THEN THANK YOU SO MUCH FOR
THESE COMMENTS, AND WE WILL MOVE
ON TO THE NEXT SECTION, WHICH IS
THE CROSS-CUTTING THEME OF SEX
AND GENDER.
AND WANT TO GET YOUR THOUGHTS
ABOUT ANYTHING THAT WE SHOULD
INCLUDE HERE.
AGAIN, THE SLIDE IS AN ATTEMPT
TO JUST SUMMARIZE A FEW THINGS
THAT ARE IN THE CHAPTER SO FAR,
BUT WE CAN REFINE IT BASED ON
THE DISCUSSION HERE.
SO SOME OF THE TOPICS INCLUDED
ARE SEX AND GENDER DISPARITIES
IN DIAGNOSIS AND DIAGNOSTIC
CRITERIA.
BIOLOGICAL DIFFERENCES BETWEEN
SEX AND GENDER.
DIFFERENCES IN SOCIALIZATION OF
DIFFERENT SEX AND GENDERS.
DIFFERENCES ACROSS THE LIFESPAN
INCLUDING FOR OLDER WOMEN.
AND DIFFERENCES IN SEXUALITY.
I BELIEVE THAT REPRODUCTIVE
HEALTH IS IN THIS SECTION AS
WELL, BUT WE WILL OPEN THIS UP
FOR ANY OTHER IMPORTANT TOPICS
THAT WE NEED TO INCLUDE IN THIS
SECTION OR IF THERE HAVE BEEN
SOME CHANGES IN THE FIELD IN THE
PAST FEW YEARS SINCE THE LAST
STRATEGIC PLAN THAT COULD IMPACT
THE DIRECTION THAT WE SHOULD
TAKE WITH THIS TOPIC.
DENA.
>> MY VIDEO WAS TURNED OFF.
BUT ANYWAY, I DO BELIEVE THAT
THERE HAVE IS IS SOME RESEARCHG
AT THE MALE/FEMALE RATIO IN
ADULTHOOD, FINDING THAT IT
PRETTY MUCH DISAPPEARS IN
ADULTHOOD.
AND I KNOW THAT PEOPLE WHO ARE
WORKING IN THE FIELD AS SOCIAL
WORKERS AND THERAPISTS ARE ALSO
FINDING A CLOSER TO AT LEAST
2 TO 1 RATIO OF MALE TO FEMALE,
SO I WANT TO MAKE SURE THAT'S
ADDRESSED.
AGAIN TOUCHING BASE ON TRAUMA
CARE, MATERNITY CARE, THERE'S A
LOT OF GOOD RESEARCH OUT ABOUT
THE DIFFERENCES IN PREPARTUM,
PARTUM AND POSTPARTUM CARE, AND
LABOR AND DELIVERY FOR AUTISTIC
ADULT WOMEN AND OTHERS WHO HAVE
UTERUSES.
SO I WOULD THICK T THINK THAT WT
WANT TO TOUCH BASE ON THOSE
ISSUES.
>> THANK YOU, DENA.
I'LL TAKE NOTE OF THAT.
NEXT WE'LL TAKE A COMMENT FROM
JENNIFER JOHNSON.
>> ARE YOU ABLE -- ARE YOU ABLE
TO HEAR ME?
>> YES.
>> OKAY.
SO I'LL JUST KIND OF BUILD OFF
OF WHAT DENA WAS SAYING.
BUT I THINK JUST GENERALLY,
GETTING ACCESS TO TRAINING ABOUT
SEXUALITY AND SEX EDUCATION IN
GENERAL IS REALLY IMPORTANT, AND
THEI THINK WE NEED TO MAKE SURE
THAT'S IN THE STRATEGIC PLAN.
AND THEN WE ALSO PROBABLY WANT
TO MAKE SURE THERE'S INFORMATION
IN THERE ABOUT RECOGNIZING
SEXUAL ABUSE AND BEING ABLE TO
REPORT THAT.
BECAUSE AGAIN, THERE'S NOT A LOT
OF TRAINING THAT GOES ON THERE
EITHER.
AND SO I THINK THAT'S IMPORTANT
TO INCLUDE.
BUT ALSO JUST WANT TO SUPPORT
THE COMMENTS ABOUT ACCESS TO
MATERNAL HEALTHCARE AND THE
IMPORTANCE OF ACCESSIBILITY AND
CARE.
>> THANK YOU, JENNIFER, FOR
THOSE COMMENTS.
THAT'S HELPFUL.
WE DIDN'T SAY ANYTHING SPECIFIC
ON THE SLIDE ABOUT ANYTHING THAT
WOULD BE MALE-SPECIFIC, BUT IF
THERE IS, THE TITLE IS SEX AND
GENDER SO IT COULD INCLUDE
ANYTHING THAT MIGHT BE
MALE-SPECIFIC ALSO.
SO ANY OTHER THOUGHTS THAT YOU
ALL HAVE BEEN HAVING ABOUT THIS
TOPIC?
YETTA.
>> OKAY, I HOPE YOU CAN HEAR ME.
JUST WANT TO PIGGY BACK ABOUT
THE SEXUALITY EDUCATION.
MAKING SURE THAT THERE'S
SOMETHING OFFERED ABOUT CONSENT
AND TEACHING CONSENT.
IT'S ONE THING OBVIOUSLY TO
REPORT ABOUT ABUSE, BUT ANOTHER
PIECE THAT I'VE BEEN LEARNING,
BECAUSE I'M WORKING WITH SOMEONE
LOCALLY IN D.C. WHO DOES DO
SEXUALITY AND EDUCATION
TRAINING, IS REALLY TEACHING
ABOUT CONSENT EARLY ON.
SO I JUST WANTED TO THROW THAT
INTO THE MIX AS SOMETHING WE
SHOULD MAYBE BE CONSIDERING.
THANKS.
>> THANK YOU.
SUSAN RIVERA.
>> HEY, THANKS, SUSAN.
I'M SEEING -- I'M NOT SEEING
ANYTHING IN THE REPORT ABOUT --
THAT MENTIONS NON-BINARY OR
TRANSSEXUAL, SO I THINK WE NEED
TO BE ATTENTIVE TO THAT.
AND MAKE SURE THAT WE SAY
SOMETHING ABOUT THAT IN THIS
CHAPTER.
BECAUSE I THINK THERE'S GOING TO
BE RIL REALLY HEAVILY ON THE MIS
OF SOME OF OUR STAKEHOLDERS.
>> YES, THERE IS AN INTENT OF
THAT, AND IF IT'S NOT INCLUDED,
IT PROBABLY WAS THAT WE WERE
RUNNING A LITTLE SHORT OF TIME
AS WE WERE TRYING TO GET THIS
FIRST DRAFT READY, BUT THANK YOU
FOR MENTIONING THAT.
ARE THERE -- I KNOW OF ISSUES
I'VE HEARD ABOUT BUT FROM YOUR
PERSPECTIVE, ARE THERE
PARTICULAR ONES THAT YOU WOULD
LIKE TO BRING TO OUR ATTENTION?
>> NOT MORE SPECIFIC THAN THIS.
IT'S JUST BEEN VERY, VERY
UNDERREPORTED AND UNDERSTUDIED.
THE PREVALENCE OF NON-BINARY AND
TRANSGENDER INDIVIDUALS ON THE
AUTISM SPECTRUM.
SOLACESO AS I HEAR IT TALKED ABN
THE AUTISM COMMUNITIES, THERE IS
AN ANGER ABOUT THAT, AND A
FEELING THAT THERE'S A LACK OF
RESEARCH ABOUT THAT.
>> THANK YOU.
THAT'S VERY HELPFUL, AND WE'LL
BE SURE TO HAVE SOME INFORMATION
ON IT BUT WOULD WELCOME ANY
INPUT FROM THE COMMITTEE ON IF
YOU RUN ACROSS SOMETHING THAT
WOULD BE HELPFUL FOR THAT.
IVANOVA.
>> HELLO, THIS IS IVANOVA.
AND MY QUESTION IS, WHAT
RESEARCHER ARE LOOKING AT
SERVICE PROVIDERS AND MAKING
SURE --
[BABY CRYING]
SORRY ABOUT THAT.
IS THERE ANY LOOK AT MAKING SURE
THAT AUTISTICS THAT ARE
NON-SPEAKING, THAT HAVE HIGH
SUPPORT NEEDS, CAN GET ACCESS TO
SEX EDUCATION AND TO GETTING
SUPPORT TO BE ABLE TO HAVE
THEIR -- TO HAVE -- BE SUPPORTED
IN DOING -- BEING ABLE TO
EXPLORE THAT WHILE THEY'RE IN A
SUPPORTIVE LIVING SITUATION
OR -- FACILITY SITUATION
[INAUDIBLE] SITUATION.
SORRY ABOUT THE CHILDREN IN THE
BACKGROUND.
>> SORRY, I FORGOT TO UP MUTE
MYSELF.
UNMUTE
MYSELF.
I WAS ALSO TRYING TO MAKE SURE
THERE WAS NOT BACKGROUND NOISE
GOING ON FROM MY COMPUTER
BECAUSE IT MAKES THE LITTLE DING
SOUNDS SOMETIMES.
IT SOUNDED LIKE YOU WERE TALKING
ABOUT EXPLORATION OF SEXUALITY
AND CONCERN ABOUT MAKING SURE
THAT PEOPLE WHO ARE NON-SPEAKING
ARE INCLUDED IN SEX EDUCATION,
BUT I THINK SOME OF -- YOU BROKE
UP A LITTLE.
>> I CAN REPEAT MYSELF IF YOU
NEED ME TO.
I JUST WANTED TO MAKE SURE THAT
THOSE PEOPLE THAT HAVE HIGH
SUPPORT NEEDS AND ARE IN, LIKE,
RESIDENTIAL FACILITIES OR
RESIDENTIAL SUPPORT PROGRAMS,
THAT THEY'RE BEING GIVEN THE
ACCESS TO THIS TOO, TO THIS
EDUCATION.
BECAUSE THERE IS SEXUAL ASSAULT
THAT HAPPENS IN THOSE PLACES AND
PEOPLE NOT BE GIVEN THE SUPPORT
TO BE ABLE TO EXPERIENCE THOSE
ADULT THINGS WHEN THEY'RE
ADULTS, THEY'RE BEING RESTRICTED
FROM THAT, AND THAT KIND OF
THING IS WHAT I'M CONCERNED
ABOUT, IS HOW DO WE MAKE SURE
THAT PEOPLE WITH THE HIGHEST
SUPPORT NEEDS, THAT NEED THE
MOST SUPPORTS, THEY'LL GET TO
ALSO HAVE ACCESS TO THIS
EDUCATION.
THANK YOU.
>> THANK YOU, IVANOVA.
NEXT WE'LL TAKE A COMMENT FROM
JENNY MAI PHAN.
>> HELLO, CAN YOU HEAR ME OKAY?
>> MM-HMM.
>> HI.
I WAS LOOKING THROUGH THE
CROSS-CUTTING OBJECTIVES DRAFT
CHAPTER, AND I WAS LOOKING FOR
ANY LANGUAGE ABOUT SEXUAL
REPRODUCTIVE HEALTH OUTCOMES.
BUT I WAS NOT SEEING THAT
ANYWHERE.
WOULD THAT BE SOMETHING THAT
COULD BE ADDED AS A TEXT WITHIN
THE CHAPTER?
>> YES.
YES, WE CAN INCLUDE SOMETHING ON
REPRODUCTIVE HEALTH IN THIS AREA
IF IT'S NOT ALREADY THERE.
>> THANK YOU.
>> ARE THERE ANY SPECIFIC POINTS
THAT YOU WERE INTERESTED IN?
>> THE PARAGRAPH THAT TALKS
ABOUT LOOKING AT GENDER AND SEX
AS A CROSS-CUTTING OBJECTIVE IN
A LOT OF THE AUTISM RESEARCH
FOCUSES MORE ON PHYSICAL HEALTH
OR GYNECOLOGICAL HEALTH BUT NOT
NECESSARILY ON REPRODUCTIVE OR
SEXUAL HEALTH, AND THIS KIND OF
TIES INTO EARLIER COMMENTS ABOUT
SEXUAL HEALTH EDUCATION TOO.
I JUST WANT TO MAKE SURE THAT
LANGUAGE IS INCLUDED IN THE
CHAPTER.
>> THANK YOU.
YES, WE WILL MAKE SURE WE ADD
SOME INFORMATION ABOUT THAT.
AND IF YOU HAVE ANYTHING IN
TERMS OF REFERENCES THAT WOULD
BE HELPFUL TO US, FEEL FREE TO
SEND THAT ALONG.
>> ABSOLUTELY.
I WILL.
THANK YOU.
>> THANK YOU.
DENA.
>> I'M SENDING YOU TWO AUTHORS
WHO'VE DONE A CONSIDERABLE
AMOUNT OF WORK ON GENDER,
NON-BINARY AND TRANS.
WE FOUND OUT THROUGH THEIR
RESEARCH THAT THE FREQUENCY IS
HIGHER IN THE FIELD OF AUTISM
FOR THOSE GENDER DIVERSITIES
THAN IN THE NON-DISABLED
COMMUNITY, AND THEY'VE TESTED
THAT BY EXAMINING POPULATIONS OF
TRANSGENDER PEOPLE FOR AUTISM,
AND EVALUATING AUTISTIC PEOPLE
FOR GENDER FLUIDITY, GENDER
DIVERSITY AND TRANSGENDER
STATUS.
SO I SENT YOU TWO AUTHORS THAT
HAVE DONE A LOT OF WORK ON THAT.
I WANT TO GO BACK TO
REPRODUCTIVE HEALTHCARE AND TALK
ABOUT THAT AGAIN AS ANOTHER
PLACE FOR WORKFORCE DEVELOPMENT
TRAINING.
YOU KNOW, PROVIDING REPRODUCTIVE
HEALTHCARE TO PEOPLE WHO HAVE
INORDINATELY HIGHER SENSORY
MANAGEMENT ISSUES, WHO MAY HAVE
INTEAR SEPTION ISSUES AND
DIFFICULTY REPORTING PAIN IN
TERMS OF INTENSITY, KIND,
LOCATION, FREQUENCY, ALL OF
THOSE ARE DIFFICULTIES FOR
PEOPLE ON THE AUTISM SPECTRUM,
AND AGAIN, NOT HAVING A
WORKFORCE THAT'S EQUIPPED TO
ADDRESS THAT CAN BE VERY
PROBLEMATIC FOR OUR GROUP.
THERE WAS ONE OTHER THING.
MENOPAUSE.
I HOPE WHEN WE'RE TALKING ABOUT
THE LIFESPAN AND OLDER WOMEN, WE
GET A LOT OF INFORMATION AS
WOMEN, WE'VE TALKED A LOT ABOUT
THIS IN THE NODE I'M WORKING
WITH AARP, WE GET ALL THIS
INFORMATION ABOUT WHAT TO EXPECT
TRANSITIONING INTO PUBERTY, BUT
THAT'S WHERE OUR REPRODUCTIVE
HEALTHCARE EDUCATION TENDS TO
STOP.
WE ASSUME THAT WOMEN WILL FIGURE
IT OUT FROM OTHER PEOPLE, THAT
THEY SOCIALIZE WITH.
WE HAVE LIMITED SOCIAL NETWORKS.
SO WE'RE REALLY IN A VOID THERE.
AND THEN LASTLY, THE
IMPLICATIONS OF LATE DIAGNOSES
OR MISDIAGNOSES AS IT APPLIES TO
SEXUAL VULNERABILITY.
SO TO GIVE YOU A REAL LIFE
EXAMPLE, MY SON WAS DIAGNOSED AT
3.
WE KNEW THAT BECAUSE OF HIS
AUTISM, THERE WERE CERTAIN
FACTORS WE HAD TO CONSIDER.
WE PROVIDED HIM WITH VERY
INTENSE, VERY STRUCTURED
INFORMATION ON SEXUALITY, ON
RELATIONSHIPS, ON TOUCH, ON
CONSENT.
PRIMARILY BECAUSE WE UNDERSTOOD
THAT HE NEEDED A DIFFERENT KIND
OF INTENSIVE AND INTENTIONAL
INSTRUCTION.
THAT LOOKED QUITE DIFFERENTLY
FOR SOMEONE LIKE ME, WHO WASN'T
DIAGNOSED UNTIL 40, RIGHT, WHO
IS PRESUMED BY THE FAMILY
SYSTEM, PRESUMED BY MY SOCIAL
NETWORKS, PRESUMED BY EVEN
MYSELF THAT I KNOW ENOUGH TO GET
BY.
AND IT LED TO A TREMENDOUS
AMOUNT OF VICTIMIZATION,
REPEATED VICTIMIZATION.
SO I THINK THAT THE
INTERSECTIONALITY OF LATE
DIAGNOSES AND INHERENTLY
DIFFERENT KINDS OF VULNERABILITY
IS SOMETHING THAT NEEDS TO BE
ADDRESSED.
>> THANK YOU.
SO WE'LL TAKE NOTE OF THAT.
THANK YOU FOR SHARING THAT.
NEXT, SCOTT ROBERTSON.
>> THANKS, SUSAN.
I JUST WANTED TO CONCUR WITH THE
EMPHASIS ON SEXUAL -- EDUCATION
ON SEXUALITY AND SEXUAL
EDUCATION AS FAR AS LIKE EQUAL
ACCESS, THAT I THINK FOLKS OFTEN
DON'T HAVE ACCESS BECAUSE OF THE
FACT OF STEREOTYPES AND
MISBELIEFS AND BASICALLY OFTEN
SOMETIMES TREATING AUTISTIC KIDS
AND ADOLESCENTS LIKE THEIR THEYE
YOUNGER CHILDREN.
YOU SEE THAT IN SOME OF THE
LITERATURE THAT TALKED ABOUT THE
PROBLEM THERE WITH TREATING
AUTISTIC PEOPLE WHO IN SOME
CASES MAY NEED EXTENSIVE ARRAY
OF CERTAIN SUPPORTS FOR LIVING,
BUT ARE ADOLESCENTS OR ARE
ADULTS, AND SHOULD HAVE THAT
EQUAL ACCESS TO EDUCATION ABOUT
SEXUALITY AND WHAT THAT MEANS
ACROSS THE LIFESPAN, AND I THINK
THAT THAT CROSS-CONNECTS WITH
SOME OF THESE OTHER BIASES THAT
WERE RAISED EARLIER AS FAR AS,
YOU KNOW, HAVING KIDS RAISING A
FAMILY, BEING ABLE TO BECOME A
PARENT, GETTING MARRIED, I MEAN,
ALL THAT IS CROSS-CONNECTED
TOGETHER IN TERMS OF ON LIFESPAN
AREAS FOR AUTISTIC PEOPLE, THAT
A LOT OF THAT IS BIASES IN THE
SYSTEM WHERE HISTORICALLY PEOPLE
ARE NOT TREATING AUTISTIC PEOPLE
RESPECTFULLY AS HUMAN BEINGS WHO
SHOULD BE ABLE TO HAVE THE SAME
ACCESS TO INFORMATION AND
KNOWLEDGE IN THAT SPACE WITH
SUPPORTS, RIGHT?
LIKE THE SUPPORTS MAY NEED TO BE
DIFFERENT, MORE TARGETED,
FOCUSED IN SOME WAYS TO HELP
FOLKS HAVE EQUAL ACCESS ON THAT,
BUT I THINK FOLKS SHOULD NOT BE,
BECAUSE OF THEIR SERVICE AND
ACCESS NEEDS, THAT SHOULD NOT BE
A REASON FOR DENYING FOLKS
ACCESS TO EDUCATION AND
SEXUALITY AS THEY GREW UP JUST
LIKE OTHER NON-AUTISTIC KIDS AND
ADOLESCENTS AND ADULTS HAVE
ACCESS TO THAT INFORMATION,
KNOWLEDGE AND RESOURCES.
I THINK ALSO, TOO, AND I THINK
WE'VE TOUCHED UPON THIS A LITTLE
BIT, BUT THE LGBTQIA+ FOCUS ON
HERE TO EXPAND A LITTLE ON THE
GREATER NEEDS FOR THAT IN
RESEARCH THAT WE HAVE SO MANY
GAPS WITH INCLUSION OF LGBTQIA+
FOLKS IN RESEARCH SAMPLES, OFTEN
VERY FREQUENTLY AUTISM
RESEARCHERS ARE NOT EVEN
COLLECTING DATA ON GENDER
IDENTITY AND SEX WALL SEXUAL ORN
IN STUDIES.
I'VE NOTICED THAT MYSELF
SOMETIMES WHEN I'VE LOOKED AT
LITERATURE, IT'S JUST OFTEN NOT
COLLECTED AT ALL, AND THERE'S
NOT AN EMPHASIS ON INCLUSION OF
FOLKS IN STUDIES AND ALSO
EMPHASIS ON HOW -- FOLKS WHO
IDENTIFY AS LGBTQIA+ CAN
PARTICIPATE AS RESEARCHERS IN
THIS SPACE AND OTHER SPACES OF
AUTISM RESEARCH.
SO I THINK WE HAVE A WAYS TO GO
TO MAKE SOME PROGRESS IN THAT
AREA, AND AS WAS MENTIONED
EARLIER, IT DOES MENTION HERE
THAT THE RATE OF LGBTQIA+ IS
HIGHER AMONG AUTISTIC PEOPLE.
A LOT OF THAT IS THE RATE OF
TRANSGENDER AS WAS MENTIONED
EARLIER, AND I CAN SEND YOU SOME
RESEARCH STUDIES ALSO ON THAT,
WHERE THEY HAVE CONFIRMED THAT
HIGH RATE, AS HIGH AS
POTENTIALLY 10%, MAYBE HIGHER,
AMONG AUTISTIC PEOPLE WHO ARE
FOLKS WHO IDENTIFY AS
TRANSGENDER, AND I AGREE ALSO
WITH WHAT WAS MENTIONED EARLIER
ABOUT NON-BINARY TOO, IS MAKING
SURE GENDER FLUIDITY IS ON HERE
AND THE MEDICAL CARE FOR
AUTISTIC PEOPLE WHO ARE LGBTQIA+
AND OTHER FOLKS AS FAR AS THAT
THEY NEED FOR HAVING THEIR NEEDS
MET INCLUDING FOR -- I DON'T
KNOW WHETHER IT'S IN HERE OR
OTHERWISE, BUT LIKE FOR
INSTANCE, IF FOLKS MAY NEED TO
TRANSITION BETWEEN GENDERS AS
FAR AS THE MEDICAL CARE OR
SURGERIES, ET CETERA, THAT ARE
NEEDED FOR THAT, THAT AUTISTIC
PEOPLE HAVE EQUAL ACCESS IN THAT
SPACE, I THINK IS PARAMOUNT.
AND I DON'T THINK THAT'S BEEN
CITED AT ALL, REALLY, IN
RESEARCH LITERATURE.
>> THANK YOU, SCOTT.
THOSE ARE HELPFUL COMMENTS.
WHEN PEOPLE ARE TALKING ABOUT
SEX EDUCATION, ARE YOU
ENVISIONING THAT COMING THROUGH
THE EDUCATIONAL SYSTEM, THROUGH
HEALTHCARE PROVIDERS, OR THROUGH
TOOL KITS THAT ARE PUT OUT BY
ADVOCACY ORGANIZATIONS OR -- I
WAS JUST CURIOUS ABOUT WHETHER
ANYONE ON THE COMMITTEE HAS A
THOUGHT ABOUT WHERE WOULD BE A
GOOD SOURCE FOR THAT
INFORMATION.
NOT TO SPECIFY BUT JUST TO KNOW
WHAT PEOPLE ARE THINKING.
>> I JUST MEANT ON MY END FOR
ALL SYSTEMS AS FAR AS EDUCATION
AND HEALTHCARE AND OTHER
ASPECTS, IT SHOULD BE INCLUDED
WHERE -- ESPECIALLY WHERE IT'S
INCLUDED ALREADY FOR
NON-AUTISTIC PEOPLE, BUT I'LL
DEFER TO THE OTHER FOLKS ON THE
COMMITTEE FOR THEIR THOUGHTS.
>> SO WE DON'T HAVE TO BE VERY
SPECIFIC ON THAT IN THE PLAN.
I WAS JUST CURIOUS ABOUT WHAT
PEOPLE THOUGHT.
AND WE DO SOMETIMES SEE
ORGANIZATIONS COME UP WITH TOOL
KITS THAT PEOPLE CAN USE, BUT
THERE MAY BE OPPORTUNITIES IN
ESTABLISHED SYSTEMS THAT ARE
ALREADY, LIKE YOU SAID, SCOTT,
PROVIDING INFORMATION ON
SEXUALITY THAT COULD PERHAPS
UPDATE THEIR OFFERINGS.
SO WE'RE GOING TO MOVE RIGHT
INTO EQUITY AND DISPARITIES TO
MAKE SURE THAT WE HAVE ENOUGH
TIME TO TALK ABOUT THAT, AND
AGAIN, A LOT OF THESE OVERLAP
WITH EACH OTHER, AND SO THERE IS
SOME OVERLAP WITH SEX AND GENDER
HERE.
BUT WE HAVE A NEW CROSS-CUTTING
THEME THAT THE COMMITTEE WANTED
TO ADD TO THE PLAN ON EQUITY AND
DISPARITIES.
AND THIS WOULD INCLUDE RACIAL
AND ETHNIC, GEOGRAPHIC, AND
SOCIOECONOMIC DISPARITIES AS
WELL AS SEX AND GENDER AND OTHER
TYPES OF DISPARITIES, AND ALSO
RECOGNIZING DISABILITY AS A
DISPARITY GROUP AND AUTISM WB
THATWITHIN THAT AS A SUBSECTIOND
INTERSECTIONALITY BETWEEN AUTISM
AND ALL OF THESE OTHER AREAS
THAT CREATE DISPARITIES.
IN ADDITION, CULTURALLY
COMPETENT AND SENSITIVE
INTERVENTIONS AND SERVICES AND
PROVIDERS, DISPARITIES IN AGE OF
DIAGNOSIS AND ACCESS TO SERVICES
AND SUPPORTS.
BALANCED AND REPRESENTATIVE
RESEARCH SAMPLES.
REPRESENTATION WITHIN THE
WORKFORCE.
AND INCLUSION, ACCESSIBILITY,
ACCOMMODATIONS AND UNIVERSAL
DESIGN ARE SOME OF THE THINGS
THAT POTENTIALLY CAN BE INCLUDED
IN THIS CHAPTER AND IN THE
DRAFT, MAYBE -- LIKE UNIVERSAL
DESIGN, I DON'T THINK IS
MENTIONED BUT I THINK IT SHOULD
BE MENTIONED IN THIS SECTION,
AND WE CAN EXPAND A LITTLE BIT
ON ACCESSIBILITY AS A THEME, BUT
I'D LIKE TO HEAR FROM YOU ABOUT
ANY OTHER IMPORTANT TOPICS OR
POINTS THAT WE MIGHT WANT TO
INCLUDE IN THIS SECTION, AND
WHAT ARE SOME OF THE RECENT
CHANGES.
AND OBVIOUSLY FOR THOSE OF US
WHO WORK IN THE FEDERAL
GOVERNMENT, THERE HAVE BEEN A
LOT OF MAJOR CHANGES IN THE PAST
YEAR OR TWO IN THIS AREA, AND
EVERY FEDERAL AGENCY IS WORKING
ON DIVERSITY, EQUITY, INCLUSION
AND ACCESSIBILITY ISSUES WITHIN
OUR AGENCIES AND WITHIN
PROGRAMMING FROM OUR AGENCIES,
AND THERE'S A LOT GOING ON WITH
PRIVATE ORGANIZATIONS AS WELL.
BUT WOULD LOVE TO HEAR SOME OF
YOUR THOUGHTS ABOUT THIS AND HOW
WE CAN MAKE THIS NEW SECTION
INCLUSIVE OF EVERYTHING THAT THE
COMMITTEE MIGHT WANT TO
RECOMMEND.
DENA?
>> I KNOW THESE EVENTS IN THE
LAST DAY AND TODAY WERE
OPTIONAL, AND AS A RESULT, I
THINK SOME OF OUR USUAL
PARTICIPANTS MAY NOT BE HERE, SO
I WOULD RECOMMEND THATTHERE'S A
COUPLE PEOPLE WHO HAVE
INORDINATELY DEEP KNOWLEDGE AND
LIVED EXPERIENCE AROUND RACIAL
AND ETHNIC DISPARITIES THAT WE
MIGHT WANT TO SCHEDULE A
SEPARATE CALL WITH JUST TO PICK
THEIR BRAIN A LITTLE BIT.
IN TERMS OF DISPARITIES, I AGAIN
WANT TO BRING UP IQ.
AS IN AND OF ITSELF A FACTOR
THAT CREATES DISPARITY.
EITHER YOUR IQ IS TOO HIGH AND
AS A RESULT, YOU'RE NOT DEEMED
WORTHY OF SERVICES.
YOU KNOW, IF YOUR IQ IS HIGH,
THEY WANT YOU TO SETTLE FOR LESS
CHALLENGING WORK IN ORDER TO GET
ACCOMMODATED AND INSTEAD OF
SUPPORTING YOU AT WORKING AT
YOUR POTENTIAL.
IF YOUR IQ IS TOO LOW, YOU'RE
DEEMED INELIGIBLE FOR SOME
RESEARCH AND SOME OPPORTUNITIES
FOR INDEPENDENT LIVING.
SO I THINK USING INTELLECTUAL
QUOTIENT THAT'S NOT EVEN
DESIGNED TO MEASURE INTELLIGENCE
IN THIS POPULATION CREATES IN
AND OF ITSELF MULTIPLE
DISPARITIES THAT INTERFERE WITH
SERVICE DELIVERY AND
ACCESSIBILITY.
>> THANK YOU FOR THOSE COMMENTS.
DEFINITELY HELPFUL, AND WE HAVE
BEEN HEARING ABOUT SOME OF THOSE
KINDS OF ISSUES AND CAN TRY TO
MAKE A MENTION OF THAT IN THE
PLAN.
JENNY MAI PHAN.
>> HI, SUSAN.
I THINK IT'S ALSO NECESSARY TO
PERHAPS ADD IN LANGUAGE IN THE
CHAPTER ABOUT DISAGGREGATING
RACIAL DATA, BECAUSE THERE ARE
SOME RACIAL GROUPS THAT
REPRESENT MULTIPLE COUNTRIES AS
COUNTRIES OF ORIGIN, LANGUAGES,
AND VARIOUS BACKGROUNDS.
AND THIS IS INTERSECTIONALITY
ASIDE.
IT'S JUST THE PEOPLE WHO LIVE
HERE IN THE U.S. WHO MAY
IDENTIFY AS, FOR EXAMPLE, ASIAN,
BUT ETHNICALLY REPRESENTING ONE
COUNTRY OF ORIGIN AND DOES NOT
REALLY RELATE TO EXPERIENCES
RELATED TO A DIFFERENT ASIAN
COUNTRY.
SO IN ORDER TO HELP ENSURE THAT
EVERYONE IN OUR COMMUNITY ARE
GETTING ACCESS TO CARE AND
SERVICES AND SUPPORTS, IT IS
IMPORTANT TO INCREASE
REPRESENTATION OF HISTORICALLY
UNDERREPRESENTED RACIAL ETHNIC
GROUPS BY DISAGGREGATING DATA.
>> THANK YOU.
FOR THOSE, YOU KNOW,
CLARIFICATIONS AND SOME FINER
POINTS ABOUT THAT.
WE CAN TRY TO MAKE A MENTION OF
LANGUAGE AND IF YOU HAVE ANY
REFERENCES THAT YOU WANT TO SEND
TO US, FEEL FREE TO SEND THAT TO
IACC TEAM.
>> I DO AND I WILL.
THANK YOU.
>> THANK YOU.
JENNIFER JOHNSON.
>> IT TAKES ME A MOMENT TO GET
MYSELF OFF OF MUTE HERE.
SO ONE OF THE THINGS -- I'M NOT
SURE IF THE STRATEGIC PLAN
INCORPORATES ANYTHING RELATED TO
HOW DIFFERENT CULTURES MIGHT
VIEW AUTISM, WITHIN THEIR
CULTURE AND WHETHER THEY WOULD
RECOGNIZE IT AS A DISABILITY OR
WHETHER THEY RECOGNIZE
DISABILITIES AT ALL, AND HOW
THAT INTERPLAYS WITH, YOU KNOW,
SERVICES AND SUPPORTS AND ALSO
SERVICE DELIVERY.
SO AGAIN, I'M NOT SURE IF THAT'S
ALREADY IN THE PLAN, BUT IF NOT,
I THINK THAT'S IMPORTANT TO MAKE
SURE IT'S INCLUDED.
>> THANK YOU.
AND IF YOU HAVE ANY REFERENCES,
I CAN THINK OF ONE THAT I JUST
SAW WITHIN THE LAST WEEK, BUT IF
YOU HAVE ANY REFERENCES ABOUT
THAT, THAT WOULD BE HELPFUL.
>> OKAY.
>> THANK YOU.
SCOTT?
>> THANKS, SUSAN.
I THINK THERE'S A FEW
SUGGESTIONS THAT I HAD IN HERE,
AND I CAN SEND YOU SOME
LITERATURE TOO.
I KNOW I DEFINITELY HAVE SOME
LITERATURE ON DISPARITIES THAT
YOU MAY BE ABLE TO CITE ON HERE
AS FAR AS AGE OF DIAGNOSIS, ET
CETERA, AND CULTURALLY
COMPETENT.
I WOULD ADD IN ADDITION TO
CULTURALLY COMPETENT,
LINGUISTICALLY COMPETENT TOO, AS
FAR AS BARRIERS THAT MAYBE
AUTISTIC FOLKS EXPERIENCE THAT
MAY SPEAK SPANISH OR OTHER
LANGUAGES HERE IN THE UNITED
STATES BECAUSE NOT EVERYBODY,
EVEN BEYOND DISABILITY, HAS
ENGLISH AS THEIR FST LANGUAGE
HE IN THE UNITED STATES, AND
THAT'S ONE OF THE BIASES WE
SOMETIMES HAVE HAD HISTORICALLY.
I WANTED TO CALL OUT THE
EMPHASIS HERE ON SOCIOECONOMIC
DISPARITIES THAT'S MENTIONED
HERE.
THE RESEARCH LITERATURE FOR
INSTANCE ON COMMUNITY LIVING HAS
NOT COLLECTED DATA GENERALLY ON
ECONOMIC PROSPERITY AND INCOME
AND WAGE AND SALARIES AMONG
AUTISTIC PEOPLE.
SO WE DON'T BE EVEN KNOW WHAT
THAT GAP LOOKS LIKE, YET ALONE
WHAT THAT GAP LOOKS LIKE FOR
SUBGROUPS AMONG AUTISTIC PEOPLE
AS FAR AS AUTISTIC PEOPLE FROM
DIVERSE RACE, ETHNICITIES,
GENDER, SEXUAL ORIENTATION, ET
CETERA.
SO WE NEED MORE DATA ON THAT.
THAT SHOULD BE -- I'D EMPHASIZE
IT SHOULD BE REQUIRED ON THERE,
IS ESPECIALLY WITH FEDERALLY
FUNDED RESEARCH, WE SHOULD HAVE
MORE REQUIREMENTS, I THINK,
WHERE POSSIBLE TO BE COLLECTING
DATA ON -- IF YOU'RE DOING AN
EMPLOYMENT STUDY, YOU SHOULD BE
COLLECTING DATA ON ECONOMIC
STATUS.
AND YOU SHOULD BE HAVING DIVERSE
SAMPLES TOO WHERE POSSIBLE TO
HAVE DIVERSITY OF AUTISTIC
PEOPLE FROM DIFFERENT
BACKGROUNDS.
NOW I KNOW THAT'S EASIER SAID
THAN DONE, BECAUSE I'M AWARE AS
A RESEARCHER BY TRAINING IN MY
OWN BACKGROUND THAT ESPECIALLY
WITH AUTISM, WITH RESEARCH
PARTICULARLY AROUND ADULTS AND
ADOLESCENTS, IT'S REALLY HARD
SOMETIMES TO CONNECT WITH FOLKS
AND TO ACHIEVE DIVERSE SAMPLES,
BUT I THINK WE NEED TO MAKE
STRONGER EFFORTS IN THAT SPACE.
RESEARCHERS NEED TO HAVE THAT
PRIORITY, I THINK FROM THE PLAN
HERE, THAT'S OF UTMOST
IMPORTANCE TO WHERE POSSIBLE
HAVING AS DIVER SIEVE SAMPLE AS
POSSIBLE, AND MAYBE OVERSAMPLE
AS TIMES, AS WAS MENTIONED
EARLIER, I THINK, SOMETIMES
OVERSAMPLE FOLKS INTENTIONALLY
JUST TO MAKE SURE YOU HAVE THAT
FULLY REPRESENTED BECAUSE IT'S
BEEN SO UNDERREPRESENTED IN THE
AUTISM RESEARCH LITERATURE
OVERALL BECAUSE IT TENDS TO
BE -- I HATE TO SAY IT BUT I'M
REFLECTIVE OF THE STEREOTYPE OUT
THERE, WHITE MALE IS EMBODIED IN
AUTISM RESEARCH, AUTISM PRACTICE
AND POLICIES KIND OF AT TIMES,
IT SO HEAVILY SLANTED AND BIASED
AND DOES NOT LOOK EXTENSIVELY AT
THAT INTERSECTION PIECE.
I WOULD ADD IN GEOGRAPHY TOO,
URBAN, RURAL TYPE OF THING, THAT
OFTEN STUDIES HAVE NOT ASKED
ABOUT GEOGRAPHY.
AND THEN I CAN SEND YOU, IF YOU
WANT, CITATIONS FOR THINGS LIKE
UNIVERSAL DESIGN.
I'M GLAD YOU HAVE THAT FOCUS ON
HERE FOR EMPOWERMENT OF ACCESS.
AND THEN ON THE -- DID YOU
MENTIONED ONE OF THE EXECUTIVE
ORDERS IN THE DESCRIPTION THERE.
I THINK IT WOULD BE HELPFUL TO
MENTION JUST BRIEFLY, EVEN IF
IT'S JUST THE CITATIONS FOR THEM
AND A FEW OF THE OTHER EXECUTIVE
ORDERS AND THE POLICY INCLUDING
DIA IN THE FEDERAL WORKFORCE
WHERE IT SPELLS OUT THE
ABBREVIATION DIA IN THAT
EXECUTIVE ORDER, AND I THINK THE
PRIORITY OF FOLKS UNDERSTANDING
DISABILITY FROM THE
ACCESSIBILITY STANDPOINT, AND
THEN THE INTERSECTIONALITY PIECE
TOO, IT PART OF DIVERSITY, AND
AUTISTIC FOLKS JUST LIKE OTHER
FOLKS COME FROM THESE OTHER
DIVERSE BACKGROUNDS TOO, I THINK
SOMETHING -- THIS EXTRA EMPHASIS
HERE IS REALLY NEEDED, AND I
WOULD SAY I KNOW THIS IS NOT
UNIQUE TO AUTISM, BUT THAT
ACCESSIBILITY PIECE OF DEIA THAT
WE HAVE IN DIVERSITY, EQUITY,
INCLUSION, AND ACCESSIBILITY IN
THE GOVERNMENT IS NOT MAKING ITS
WAY OUTSIDE OF THE GOVERNMENT.
EVEN SOMETIMES NOT TO OUR SISTER
AGENCIES.
I KNOW THAT'S NOT UNIQUE TO
AUTISM, BUT WE NEED TO MAKE MORE
HEADWAY THAT.
BECAUSE A LOT OF FOLKS DON'T
KNOW WHAT THE A IS AND THEY
DON'T KNOW WHAT ACCESSIBILITY IS
AT THE BARE MINIMUM LEVEL.
AND IT'S HARD TO IMAGINE FOR
AUTISM SPECIFICALLY WITH THE
BARRIERS WE HAVE ACROSS THE
BOARD ON THAT FOCUS FOR DIA, BUT
I'M GLAD YOU HAVE A START BY
HAVING THE CITATION FOR THE
RACIAL EQUITY AND UNDERSERVED
COMMUNITIES AS ONE OF THE
EXECUTIVE ORDERS CITED HERE.
AND THEN I'LL THROW IT BACK TO
OTHERS, IT'S OF UTMOST
IMPORTANCE TO US AS FEDERAL
AGENCIES RIGHT NOW IN THE LAST
COUPLE YEARS AS WE'VE HEAVILY
EXPANDED OUR FOCUS.
IT'S ONE OF THE TOP -- I'D SAY
TWO OR THREE PRIORITIES.
I KNOW FOR US HERE AT DOL, IS
THAT DIVERSITY, EQUITY,
INCLUSION, ACCESSIBILITY PIECE.
SO I THINK ANYTHING WE CAN DO TO
STRENGTHEN THE LANGUAGE ON THAT,
AND TO MAKE SURE THAT IT
PERCOLATES INTO RESEARCH
PRACTICES AND POLICY AND THAT IT
SHOULD BEING INFLUENCING
EVERYTHING THAT WE DO IN THAT
SPACE, INCLUDING WHEN WE TALK
ABOUT WORKFORCES, THAT SHOULD
MAKE SURE NOT ONLY THAT AUTISTIC
PEOPLE ARE ABLE TO PARTICIPATE
IN SOME OF THESE WORKFORCE NEEDS
WE'VE BEEN TALKING ABOUT, ABOUT
A SERVICE PROVISION AS
RESEARCHER, BUT DIVERSE YO AUTIC
PEOPLE WHO COME FROM DIVERSITY
OF THE RACE, GENDER, GENDER
IDENTITY, SEXUAL ORIENTATION,
SOCIOECONOMIC STATUS.
>> CERTAINLY THOSE ARE REALLY
IMPORTANT.
AND WITH ACCESSIBILITY, YOU'RE
CORRECT THAT A LOT OF PEOPLE, IT
SORT OF DROPS OFF THE END OR I
FIND THAT WITH ACCESSIBILITY,
THAT SOMETIMES PEOPLE ARE ONLY
THINKING ABOUT PHYSICAL
DISABILITIES, BLINDNESS OR
DEAFNESS AND THEY ARE NOT
THINKING ABOUT THE BROADER RANGE
OF DISABILITIES.
SO THAT IS REALLY IMPORTANT.
AND WE DO HAVE NEURODIVERSE
FEDERAL WORKFORCE INITIATIVES
GOING ON IN THE GOVERNMENT AS
WELL THAT COULD BE MENTIONED,
AND THE EXECUTIVE ORDER, YOU
MENTIONED AS WELL SO THAT COULD
BE BUILT OUT A LITTLE BIT MORE.
BUT WE ALSO WILL TRY TO -- I
DON'T KNOW IF THIS IS IN THERE
ALREADY OR NOT, BUT THERE'S AN
INTENTION TO MENTION THAT
SOMETHING NEW THAT HAS COME
ALONG SINCE THE LAST STRATEGIC
PLAN IS THAT THERE'S MORE FOCUS
ON NEURODIVERSITY AND THERE ARE
MANY CONFERENCES, ET CETERA,
THAT ARE HAPPENING ON THIS TOPIC
AND BRINGING PEOPLE TOGETHER TO
TALK ABOUT THIS IN A BROADER
CONTEXT.
SO THANK YOU FOR THAT COMMENT.
SAM CRANE.
>> I WANT TO QUICKLY TALK ABOUT
BIAS IN ADDITION TO -- AND OF
COURSE ACCESS BUT I THINK THAT
WE'VE TALKED ABOUT ACCESS, BUT
BIAS CAN BE A BIG BARRIER TO
DIAGNOSIS AND IT'S NOT JUST -- I
THINK IT'S NOT JUST ABOUT
CULTURAL COMPETENCE.
ONE VERY COMMON EXAMPLE IS THAT
AFRICAN AMERICAN PEOPLE,
ESPECIALLY CHILDREN, ARE
DIFFERENTIALLY DIAGNOSED USUALLY
AS HAVING EITHER A STANDALONE
I.D. OR EMOTIONAL DISTURBANCE OR
OPPOSITIONAL DEFYING DISORDER,
WHICH OFTEN CAN BE A BARRIER TO
CARE, SO THESE ARE KIDS WHO ARE
GETTING AN EVALUATION, AND THE
EVALUATOR MIGHT BELIEVE THEY ARE
CULTURALLY COMPETENT, BUT THEY
ARE OFTEN VIEWING BEHAVIOR IN
THROUGH A LENS THAT IS RACIALLY
BIASED, AND TENDS TO ATTRIBUTE
BEHAVIOR TO, FOR EXAMPLE,
INTENTIONAL MISCONDUCT RATHER
THAN AUTISM OR ATTRIBUTE
DIFFICULTIES TO LOWER IQ RATHER
THAN AUTISM.
ANOTHER EXAMPLE THAT I'VE SEEN
IS THAT SOMETIMES PEOPLE WILL
GET CULTURAL COMPETENCY TRAINING
IN A WAY THAT ACTUALLY INCREASES
BIAS.
SO I'VE SEEN SITUATIONS WHERE
ASIAN CHILDREN HAVE BEEN
DISMISSED BECAUSE EVEN IF THE
PARENT WHO IS ALSO ASIAN
MENTIONS THAT THEY'VE NOTICED
DIFFERENCES IN EYE CONTACT IN
SOCIAL ENGAGEMENT, THE EVALUATOR
WILL SAY, WELL, I'VE LEARNED
THAT ASIAN CULTURES ARE LESS
LIKELY TO MAKE EYE CONTACT.
AND ARE LESS LIKELY TO
SPONTANEOUSLY INTERACT WITH
ADULTS AND IT'S NORMAL AND THIS
IS ALL COMPLETELY FINE AND,
THEREFORE, WE'RE NOT GOING TO
RECOGNIZE THIS CHILD AS YO
AUTISTIC, EVEN WHEN THE PARENTS
THEMSELVES ARE SAYING THIS IS
NOT ACTUALLY NORMAL FOR OUR
CULTURE AND THIS KID HAS
SIBLINGS WHO ARE COMPLETELY
DIFFERENT.
SO YOU KNOW, I THINK WE NEED TO
SPECIFICALLY CALL OUT BIAS IN
ADDITION TO CULTURAL COMPETENCY.
>> THANK YOU.
THAT'S HELPFUL.
AND IF YOU HAVE ANY RECENT
REFERENCES ON THAT, WE WERE
LOOKING UP A FEW REFERENCES BUT
THERE WERE SOME OLDER ONES, BUT
IF YOU HAVE ANYTHING A BIT
NEWER, THAT WOULD BE GREAT.
>> AND FORTUNATELY A LOT OF
THESE CASES CAME TO ME AS LEGAL
REFERRALS SO I CAN'T MUHAMMAD
NAAEMMUHAMMADNAAEMNAME NAMESOR .
>> NOT A PROBLEM.
JUST IF YOU HAVE, SAY, JOURNAL
ARTICLES BUT IT'S DEFINITELY AN
IMPORTANT ISSUE, SO THANK YOU.
SO I'M GOING TO GO TO STEVEN.
DO YOU HAVE SOME WRITTEN
COMMENTS?
>> HI THERE.
YES, I HAVE ONE COMMENT FROM
YETTA MYRICK.
QUESTION IS, IS THERE ANYTHING
ABOUT UTILIZING CULTURAL BROKERS
AND/OR COMMUNITY LIAISONS?
ANYTHING ABOUT HOW TO ENGAGE
THESE COMMUNITIES?
THIS IS KEY INFORMATION TO
INCLUDE, AND YETTA ALSO
CONCURRED THAT BIAS IS A HUGE
ISSUE.
>> GREAT.
THAT'S HELPFUL.
WE DON'T HAVE ANYTHING ABOUT
THAT RIGHT NOW, BUT AGAIN, IF
YOU HAVE ANY REFERENCES, YOU
MIGHT BE ABLE TO SEND US,
WHETHER IT'S A WEBSITE OR A
JOURNAL ARTICLE, THAT WOULD BE
HELPFUL, OR EVEN AT THIS POINT
IF THERE'S NOT A LOT IN
JOURNALS, IF THERE'S ANYTHING
POPULAR THAT WE CAN REFER TO
JUST TO UNDERSTAND A LITTLE BIT
MORE OF THAT BACKGROUND, IT
WOULD BE HELPFUL.
>> OKAY, I CAN DO THAT.
THANKS, SUE SAFNLT SORRY I'M NOT
ABLE TO BE ON.
>> NO PROBLEM.
IVANOVA?
>> THIS IS IVANOVA.
MY QUESTION IS, IS THERE
ANYTHING TO ADDRESS THE
DISPARITIES FO FOR ADOPTEES,
ADOPTED CHILDREN, TRANSITIONAL
ADOPTEE, GETTING EDUCATION TO
ADOPTIVE AGENCY SO THAT
RESOURCES CAN BE GIVEN TO
FAMILIES THAT HAVE AUTISTIC --
THAT ARE ADOPTING AUTISTIC KIDS,
AND THEY MAY NEED SUPPORT.
THANK YOU.
>> THANK YOU.
AND I KNOW THAT WE DON'T HAVE
ANYTHING ON THAT EITHER, SO IF
YOU HAPPEN TO KNOW OF ANY
REFERENCES THAT WOULD BE
HELPFUL.
SO DO WE HAVE ANY OTHER COMMENTS
IN THIS AREA?
AND DO YOU HAVE MORE, IVANOVA?
I DON'T KNOW IF YOU MIGHT HAVE
LEFT YOUR HAND UP.
>> OH, SHO.
I'M SORRY, I JUST LEFT MY HAND
UP.
>> THAT'S OKAY.
THAT'S OKAY.
DENA?
>> JUST ONE COMMENT.
PART OF THE REASON WHY WE DON'T
HAVE A LOT OF INFORMATION ON
THIS IS THAT WE'RE NOT
RECOGNIZING THE VALUE OF
QUALITATIVE RESEARCH, BECAUSE
THAT'S WHERE SOME OF THESE MORE
MARGINALIZED POPULATIONS ARE
REPORTING OUT, WHEN WE CAN'T GET
THEM IN BIGGER DATASETS BECAUSE
WE'VE DONE SUCH AN INADEQUATE
JOB OF BREAKING DOWN DIVERSE
POPULATIONS.
SO I GUESS I JUTS WANT TO POINT
OUT THE VALUE OF THOSE LIVED
EXPERIENCES IN THAT QUALITATIVE
RESEARCH.
IT LISTED ABOVE THE STATUS OF AN
ANECDOTAL REPORT AND PROVIDES
LIKE TRUE THEMES AND THEMATIC
ANALYSIS THAT CAN INFORM THIS.
SO I JUST WANTED TO PUT A SHOUT
OUT FOR QUALITATIVE, I GUESS.
>> THANK YOU.
AND THERE IS AN INTENTION,
SOCIAL DETERMINANTS OF HEALTH IS
IN HERE IN THE STRATEGIC PLAN,
IN THE NEW PLAN, AND IT INCLUDES
SOME SOCIAL SCIENCES RESEARCH,
BUT ONE OF OUR LIMITATIONS IS WE
DON'T HAVE ACCESS TO A SOCIAL
SCIENCES DATABASE, SO IT'S
HARDER FOR US TO FIND THAT.
SO I KNOW YOU'RE DOING RESEARCH
IN THAT AREA, OR ANYBODY ON THE
COMMITTEE WHO MIGHT BE DOING
RESEARCH IN THAT AREA, AND IF
YOU SEE THINGS THAT ARE COMING
OUT OF SOCIAL SCIENCE JOURNALS
THAT YOU WANT US TO INCLUDE, IF
YOU COULD SEND IT OUR WAY, THAT
WOULD BE HELPFUL, ESPECIALLY
SINCE I DON'T KNOW THAT WE CAN
ALWAYS FIND THOSE.
SCOTT?
>> YEAH, HI, SUSAN.
I ALSO HAVE ACCESS TO THE
ACADEMIC DATABASES, SO I'D BE
HAPPY TO SEND YOU ANY ARTICLES
YOU WANT AS FAR AS INCLUDING ON
THE SOCIAL SCIENCE AND I CONCUR
ALSO WITH NOT ONLY QUALITATIVE
RESEARCH BUT MIXED METHODS WHERE
IT'S QUALITATIVE AND
QUANTITATIVE.
I THINK ESPECIALLY FOR EMERGING
AREAS, THAT QUALITATIVE RESEARCH
IS NEEDED.
I HATE TO SAY IT LIKE THIS, BUT
A LOT OF AREAS THAT WE TALK
ABOUT A LOT, ESPECIALLY FOR
ADULTS AND OLDER ADOLESCENTS
HAVE LIMITED RESEARCH IN JUST
KEY AREAS OVER THE LIFE
EXPERIENCE, RIGHT?
WHERE THERE WOULD BE MAJOR
BENEFIT FROM HAVING MORE
QUALITATIVE RESEARCH AND MIXED
METHODS RESEARCH IN THOSE AREAS.
AND IT'S COMPLEMENTARY TO
QUANTITATIVE RESEARCH.
JUST SO FOLKS KNOW FOR CONTEXT,
SOME OF THE ISSUE ALSO IS
BECAUSE IN EUROPE AND OTHER
PARTS OF THE WORLD, THERE'S SORT
OF MORE OF THE VALUE FOR
QUALITATIVE RESEARCH AND
HISTORICALLY HERE IN AMERICA,
THERE HASN'T BEEN AS MUCH VALUE
PLACED ON QUALITATIVE RESEARCH,
WHICH IS WHY WE DON'T SEE IT
FUNDED SOMETIMES AS OFTEN AS
QUANTITATIVE RESEARCH.
THERE'S SORT OF A BIAS
INCLINATION TOWARD QUANTITATIVE
RESEARCH, EVEN THOUGH THEY'RE
COMPLIMENTARY TO EACH OTHER.
SO I THINK IF THERE'S WAYS TO
CALL THAT OUT ABOUT GREATER NEED
FOR QUALITATIVE RESEARCH AND
MIXED METHODS RESEARCH IN THESE
EMERGING AREAS, YOU KNOW, THAT
WOULD BE HELPFUL AND AGAIN, YOU
KNOW, HAPPY ON THE SOCIAL
SCIENCE END TO HELP SUPPORT IN
TERMS OF THE FULL TEXT PDFs
FOR WHAT YOU WANT TO READ ON
THESE THINGS AND BE ABLE TO
CITE, AND ANY LITERATURE THAT'S
OUTSIDE OF ACADEMIC TOO, THERE
MIGHT BE A REPORT FOR SOME OF
THESE EMERGING AREAS WHERE IT
HASN'T BEEN PUBLISHED IN PEER
REVIEWED SCHOLARLY JOURNALS BUT
MAY STILL BE OF INTEREST BECAUSE
IT'S, YOU KNOW, OUTSIDE DONE BY
PRACTITIONERS OR WHATEVER BUT IT
STILL MIGHT BE POTENTIALLY
CITEABLE.
>> THANK YOU.
THAT WOULD BE GREAT IF YOU HAVE
REFERENCES OR WE CERTAINLY CAN
REACH OUT IF THERE ARE ONES WE
HEAR ABOUT THAT WE'RE NOT ABLE
TO EASILY ACCESS.
SO ANY OTHER COMMENT ON THIS
TOPIC?
THANK YOU IS MUCH SO MUCH FOR E
HELPFUL FEEDBACK.
WE GOT QUITE A BIT ON THIS THAT
WILL HELP US BUILD IT OUT A BIT
MORE.
OKAY.
SO I'M GOING TO MOVE US INTO THE
COVID SECTION -- OH, WE HAD --
THAT WAS ON THE ORIGINAL BREAK,
BUT I MOVED TO JUST BEING ONE
BREAK, IF THAT'S OKAY WITH
EVERYONE.
TO JUST KEEP US MOVING.
SO WE'LL GET OUT ON TIME OR IF
WE HAPPEN TO GET OUT EARLY, THAT
WOULD BE GREAT TOO, IF THAT
WORKS OUT.
SO WE'LL MOVE INTO COVID-19.
SO WE HAVE A CHAPTER ON THIS,
AND THE COMMITTEE WANTED THIS
AREA TO BE FORWARD-FACING TO
LOOK TO WHAT WE HAVE LEARNED
FROM THE COVID-19 EXPERIENCE,
WHAT WE'VE LEARNED ABOUT THE
VULNERABILITIES OF THE AUTISM
COMMUNITY, THE NEEDS FOR
ADDITIONAL SERVICES AND
ASSISTANCE IN VARIOUS WAYS AND
WHAT THE IMPACT HAS BEEN ON THE
RESEARCH COMMUNITY.
SO WE'VE INCLUDED THE TOPIC SO
FAR OF COVID-19 AND PHYSICAL
HEALTH, INCLUDING HEIGHTENED
RISK OF COVID-19 IN THE AUTISM
COMMUNITY AND THE IMPACT OF,
SAY, CONGREGATE CARE, IMPACT OF
COVID-19 ON MATERNAL HEALTH AND
PRE AND POSTNATAL DEVELOPMENT,
IMPACT OF COVID-19 MITIGATION
EFFORTS INCLUDING VACCINES,
DISTRIBUTION AND UP TAKE,
SENSORY AND COMMUNICATION ISSUES
ASSOCIATED WITH PREVENTIVE
EFFORTS OR INTERVENTIONS,
SERVICES DISRUPTIONS AND
INCLUDING EDUCATIONAL
DISRUPTIONS, AND MENTAL HEALTH
IMPACTS OF PHYSICAL DISTANCING.
THE IMPACT OF COVID-19 ON AUTISM
RESEARCH AND RESEARCHERS, AND
WHAT HAVE WE LEARNED AND HOW WE
CAN PREPARE BETTER FOR THE
FUTURE.
AND INCLUDING INFECTIOUS DISEASE
PREPAREDNESS.
PREPAREDNESS TYPES OF
ACTIVITIES.
SO THOSE ARE SOME OF THE THINGS
WE'VE INCLUDED HERE.
WITH REGARD TO COVID-19.
IF ANY OF YOU HAVE THOUGHTS
ABOUT OTHER TOPICS THAT SHOULD
BE MENTIONED WITH REGARD TO
COVID-19 AND AUTISM, WE'D BE
INTERESTED IN HEARING YOUR
FEEDBACK.
IVANOVA?
>> I WOULD JUST SAY PERSONALLY,
AS AN AUTISTIC PERSON, THE
COVID-19 PROTOCOLS HAVE BEEN
VERY INACCESSIBLE AND HAVE
REALLY AFFECTED MY MENTAL HEALTH
AND REALLY AFFECTED THE MENTAL
HEALTH OF MANY U AUTISTICS LIKEE
THAT HAVE SENSORY ISSUES OF
TEXTUAL THINGS AROUND THEIR
FACE, AND HAVING TRAUMA AROUND
BEING INSTITUTIONALIZED, IT MADE
ME FEEL LIKE THE COMMUNITY HAD
BECOME AN INSTITUTION.
AND THAT -- I WAS ALWAYS
TERRIFIED OF NOT BEING -- IF I
ENDED UP IN THE HOSPITAL AND NOT
BEING ABLE TO HAVE SUPPORT.
AND I THINK THAT THE PROTOCOLS
NEED TO HAVE UNDERSTANDING THAT
NOT ALL AUTISTICS CAN DO THE
SAME THING, AND I THINK THAT
THEY HAVE THIS BELIEF THAT WE
ALL CAN JUST DO THE SAME THING,
AND THAT'S NOT TRUE AND IT'S
CAUSED A LOT OF DISTRESS FOR THE
COMMUNITY AND ESPECIALLY FOR
AUTISTICS WHO HAVE HIGH SUPPORT
NEEDS AND RESTRICTIV.
ENVIRONMENTS.
THEY FOUGHT DECADES TO HAVE
FREEDOM IN THOSE ENVIRONMENTS
AND THOSE PROTOCOLS MADE THAT GO
BACKWARDS A LOT, AND RESTRICTED
PEOPLE'S RIGHTS TO THEIR
COMMUNITY, TO GO ON WALKS, TO DO
SPORTS, TO DO RECREATION, TO BE
WITH THEIR FAMILIES, TO DO THEIR
DAILY ROUTINE.
WHEN AN YO AUTISTIC'S PERSON'S
ROUTINE IS DISRUPTED THAT CAUSES
A LOT OF MENTAL DISTRESS, AND IT
COULD CAUSE MELTDOWNS, AND IF
PROVIDERS ARE NOT UNDERSTANDING,
IT CAN CAUSE A LOT OF PEOPLE TO
BE ABUSED IN CARE FACILITIES.
AND I WORRY THAT A LOT OF THAT
HAPPENS, MY PEERS AND I, WE SET
UP ZOOMS TO SUPPORT EACH OTHER
AND TALK WITH EACH OTHER BUT NOT
ALL AUTISTIC PEOPLE CAN ACCESS
ZOOM AND CAN ACCESS VIDEO
CONFERENCING.
THERE ARE MANY FACILITIES THAT
DEEFNT ADON'T EVEN ALLOW PEOPLEE
WIFI, THEY DON'T EVEN ALLOW
PEOPLE ACCESS TO THE VIRTUAL
COMMUNITY.
SO MANY PEOPLE WERE CUT OFF FROM
THEIR COMMUNITY BECAUSE OF THESE
PROTOCOLS, AND I WANT TO MAKE
SURE THAT IF ANOTHER PANDEMIC
WAS TO HAPPEN, THAT WE WOULD
MAKE SURE THAT THERE ARE
EXEMPTIONS AND THAT CARE
FACILITIES ARE NOT RESTRICTING
PEOPLE FROM THEIR RIGHTS THAT
HAVE VIRTUAL CONNECTION WITH
THEIR FRIENDS AND FAMILY AND
THAT THEY'RE NOT BEING DENIED
ACCESS TO TECHNOLOGY.
AND NOT BEING DENIED MEDICAL
CARE BECAUSE THEY CAN'T WEAR A
MASK OR FOLLOW CERTAIN PROTOCOLS
OR THEY NEED SEVERAL PEOPLE TO
SUPPORT THEM IN GETTING MEDICAL
APPOINTMENTS.
I'VE HAD PEERS WHO THEY NEEDED
TWO PEOPLE TO SUPPORT THEM IN
MEDICAL APPOINTMENTS, AND THEY
WERE DENIED ACCESS TO THEIR
MEDICAL CARE AND DENIED SURGERY
THAT THEY NEEDED BECAUSE THEY
COULDN'T -- THEY WEREN'T ALLOWED
TO HAVE TWO PEOPLE SUPPORTING
THAT PERSON.
SO THIS IS SOMETHING THAT IT'S
REALLY TRAUMATIC AND IT REALLY
HAD A NEGATIVE IMPACT ON A LOT
OF AUTISTIC PEOPLE, INCLUDING
MYSELF, AND I REALLY WANT TO
MAKE SURE THAT THE CDC
RECOGNIZES THAT AND THEY MAKE
SURE THAT THE PROTOCOLS ARE MORE
UNDERSTANDING OF THE NEEDS OF
AUTISTIC PEOPLE.
THANK YOU.
>> THANK YOU SO MUCH FOR SHARING
THAT DETAIL ABOUT THE
EXPERIENCES YOU AND OTHERS HAVE
HAD WITH REGARD TO SOME OF THESE
PROTOCOLS AND SO WE APPRECIATE
THAT INFORMATION, AND WE'LL BE
SURE TO INCLUDE SOMETHING ABOUT
INCREASING ACCESSIBILITY AND NOT
INFRINGING ON PEOPLE'S RIGHTS AS
PEOPLE TRY TO PUT TOGETHER
PROTOCOLS TO KEEP PEOPLE SAFE
DURING A PANDEMIC.
>> THANK YOU.
>> DENA.
YOU'RE WELCOME.
>> I WANTED TO BRING UP THE
NUMBER OF FORWARD-FACING
PERSONNEL IN MULTIPLE HUMAN
SERVICES OFFICES WHO HAVE JUST
SIMPLY LEFT THE INDUSTRY, WHO
HAVE UNFORTUNATELY DIED
PREMATURELY, SO THERE'S A REAL
DEFICIT.
WE'VE HAD MANY SOCIAL SECURITY
OFFICES THAT ARE CLOSED OR
REMAIN CLOSED FOR IN-PERSON
VISITS, WHICH CAN BE VERY
CRITICAL FOR COMMUNICATION.
AND THEN RELATED -- IT'S KIND OF
A CLASH OF THE DISABILITIES.
THE FLIP SIDE OF IVANOVA'S STORY
IS THE NUMBER OF AUTISTIC PEOPLE
WITH AUTOIMMUNE ISSUES WHO ARE
EQUALLY TRAPPED AT HOME BECAUSE
WE HAVE DECIDED TO OPEN UP THE
COMMUNITY SO PEOPLE DON'T HAVE
TO COMPLY WITH MASK ORDERS.
AND SO THERE'S CHALLENGES ON
BOTH SIDES OF THAT ARGUMENT, I
GUESS IS ALL I WANT TO SAY.
BUT I THINK ADDRESSING THE
WORKFORCE SHORTAGES AND SOCIAL
SECURITY AND VOC REHAB AND
EMPLOYMENT TRAINING PROTOCOLS
AND IN-HOME SUPPORT SERVICE
PERSONNEL, DIRECT SUPPORT STAFF
PERSONNEL, WHO ARE, BY THE WAY,
MASSIVELY UNDERPAID, ALL OF
THOSE HAVE BEEN AMPLIFIED BY
COVID-19.
>> THANK YOU, DENA, FOR THAT
INFORMATION AND BACKGROUND.
THAT'S CERTAINLY AN AREA THAT WE
COULD COVER IN THE PLAN.
NEXT I'M GOING TO GO TO STEVEN
TO SEE IF WE HAVE SOME WRITTEN
COMMENTS.
>> HI THERE.
THIS COMMENT IS FROM ALYCIA
HALLADAY.
SHE SAYS, WE NEED TO LOOK AT THE
EFFICACY OF ONLINE DIAGNOSES AND
INTERVENTIONS.
DURING THE PANDEMIC, WE WERE
THROWN INTO JUST USING IT
WITHOUT BEING TESTED.
WE ALSO NEED TO LOOK AT
COMPARATIVE EFFICACY ACROSS
DIFFERENT USES, SUCH AS MEDICAL
AND EDUCATIONAL, AND SYMPTOMS
LIKE MENTAL HEALTH OR OTHER CORE
FEATURES.
>> THANK YOU, ALYCIA, FOR THOSE
COMMENTS.
THAT'S DEFINITELY HELPFUL WITH
REGARD TO REMOTE SERVICES THAT
PEOPLE HAVE BEEN GETTING AND
HEALTHCARE, SO WE'LL BE SURE TO
INCLUDE THAT.
JENNIFER JOHNSON.
AND IT LOOKS LIKE YOU'RE
UNMUTED, JENNIFER.
ARE YOU ABLE TO SPEAK?
I KNOW IT MIGHT BE CHALLENGING
IF YOU'RE ON A REMOTE DEVICE.
>> SHE'S ON A PHONE, I THINK IT
LOOKS LIKE, BASED ON THE
PARTICIPANT LIST.
I DON'T KNOW IF SHE HAS TO HIT
SOMETHING TO UNMUTE ON THE
PHONE?
>> PROBABLY.
AND IT'S A LITTLE HARD TO SEE ON
A SMALL DEVICE.
THERE YOU ARE.
>> I THOUGHT I HAD UNMUTED
MYSELF ON THE PHONE BUT I GUESS
I HADN'T.
SO I THINK WHAT I'M GOING TO SAY
IS, IT'S BEEN SAID A LITTLE BIT
ALREADY BY SEVERAL FOLKS, BUT
ONE OF THE THINGS THAT CERTAINLY
CAME TO THE FOREFRONT WITH COVID
WAS JUST OVERALL ACCESS TO CARE
AND QUALITIES THAT ARE USED IN
MAKING MEDICAL DECISIONS.
SO I THINK THERE'S A LOT OF
EMERGING WORK THAT'S GOING ON
AROUND THE USE OF QUALITY OF
LIFE INDICATORS THAT RELATES TO
MEDICAL DECISION-MAKING, AND THE
DISCRIMINATION AND ABLEISM THAT
OCCURS WITHIN ALL OF THAT.
SO I THINK IT'S IMPORTANT THAT
THE STRATEGIC PLAN INCLUDES
THOSE KINDS OF ISSUES.
AND TALKING A LITTLE BIT ABOUT
THE HOME AND COMMUNITY-BASED
SYSTEM AND HOW IT WAS REALLY
IMPACTED BY THE PANDEMIC, AND IT
WAS AN INFRASTRUCTURE THAT
ALREADY HAD SOME ISSUES BUT
CERTAINLY COVID REALLY TRULY
IMPACTED ALL PARTS OF HCBS BUT
WE'VE ALSO SEEN SOME REALLY GOOD
THINGS EMERGING FROM THE
PANDEMIC AS A RESULT OF THE
IMPACT THAT IT HAD ON HOME AND
COMMUNITY-BASED SERVICES, SO FOR
EXAMPLE, WE SAW PROVIDERS
COMPLETELY TRANSFORM THE WAY
THAT THEY WERE PROVIDING
SERVICES AND SUPPORTS, SO I
THINK IT'S WORTH LOOKING AT, NOT
ONLY THE IMPACT OF COVID ON THE
HCBS INFRASTRUCTURE, BUT ALSO
WHAT HAS BEEN EMERGING AS MORE
EFFICIENT AND BETTER WAYS OF
DOING SERVICES AND SUPPORTS.
THE OTHER THING I THINK THAT'S
IMPORTANT TO LOOK AT IS WE
CERTAINLY KNEW THAT PEOPLE WITH
DISABILITIES WERE AT GREATER
RISK OF BEING INSTITUTIONALIZED
FOR A VARIETY OF REASONS AS A
RESULT OF THE PANDEMIC.
I THINK IT'S IMPORTANT TO KNOW
WHERE FOLKS ARE AND IF WE SAW
INCREASES IN INSTITUTIONAL
SETTINGS FOR PEOPLE.
OR WHETHER IT SLOWED -- WE THINK
IT SLOWED THE MOVEMENT OF PEOPLE
OUT OF INSTITUTIONAL SETTINGS
BUT UNDERSTANDING THAT, I THINK
IS IMPORTANT AS WELL.
THEN THE LAST THING IS JUST THAT
WE KNOW THAT ALL DISASTERS AND
EMERGENCIES REQUIRE LOCAL
RESPONSES AND STATE RESPONSES,
AND IT'S ALL GOING TO VARY BASED
ON THAT LOCAL SYSTEM AND STATE
SYSTEM.
WE ALSO KNOW IT REALLY REQUIRES
A LOT OF PARTNERSHIP TO ADDRESS
THE NEEDS OF PEOPLE WITH
DISABILITIES.
SO THE EXTENT TO WHICH WE CAN
INCORPORATE THOSE KINDS OF
THINGS AND HIGHLIGHT THAT OR
HIGHLIGHT WHERE IT'S WORKING OR
THE NEED FOR THAT, OR ANY
SUPPORT THAT WE CAN GIVE FOR THE
PARTNERSHIPS TO BE THERE AT THE
LOCAL AND STATE LEVEL, TO MAKE
SURE THAT PEOPLE WITH
DISABILITIES ARE INCLUDED IN ANY
KIND OF DISASTER, WE SAW THAT
WHERE THOSE RELATIONSHIPS
EXISTED, EITHER AT THE LOCAL OR
THE STATE LEVEL, REALLY HELPED
EITHER THAT LOCAL AREA OR THE
STATE OVERALL TO BETTER RESPOND
TO THE NEEDS OF PEOPLE WITH
DISABILITIES.
>> THANK YOU, JENNIFER.
AND I KNOW THAT WE ALSO HAVE
SOME FEDERAL COORDINATION AROUND
DISASTER PLANNING AND PEOPLE
WITH DISABILITY AS WELL THAT
WE'LL MENTION.
WE'RE GOING TO ADD A SECTION
THAT WILL BE ABOUT COORDINATION
EFFORTS BECAUSE AS WE KNOW FROM
OUR ICC MEETINGS, AND I'VE BEEN
TRYING TO GIVE OUT REPORTS ON
ALL THE DIFFERENT FACA COMMIT
EYES THCOMMITTEES THAT ARE MEET,
WE'RE ALSO DOING WORK ON
PREPAREDNESS SO WE CAN CERTAINLY
ADD THAT INTO THIS SECTION.
SO THANK YOU FOR THAT.
NEXT I'LL GO TO LINDSEY NEBEKER.
>> HI, YES.
I THINK THIS WAS ACTUALLY
STARTING TO BE BROUGHT UP
ALREADY, BUT I WAS TAKING A LOOK
AT THIS DOCUMENT HE HERE, AND
THERE'S VERY LITTLE MENTION OR
EMPHASIS THAT TALKS ABOUT
ACCESSIBILITY TO COVID VACCINES
AND TREATMENT, AS WELL AS
VACCINE EDUCATION.
I THINK THAT WAS STARTED TO BE
BRUSHED ON, AND I WOULD -- YOU
KNOW, I WOULD SUPPORT THE IDEA
OF INCLUDING A PART ABOUT
COLLABORATIVE EFFORTS THAT ARE
BEING MADE TO IMPROVE THOSE
EFFORTS.
I THINK I SEE MORE EMPHASIS IN
HERE ABOUT, LIKE, HOW WE NEED TO
ADDRESS THE LONG TERM AFFECTS OF
THE PANDEMIC ON LIKE MENTAL
HEALTH AND WILLINGNESS AND
DEPRESSION AND SO FORTH.
BUT I ALSO WISH THAT WE CAN SEE
A LITTLE BIT -- SOME ADDITIONAL
MENTION OF HOW CAN WE MAKE THE
EXPERIENCE OF GETTING TREATMENT
FOR COVID OR GETTING A COVID
VACCINE MORE ACCESSIBLE OR MORE
ACCOMMODATING FOR THE
INDIVIDUAL.
AND THEN ALSO ADDRESSING, YOU
KNOW, THERE ARE INDIVIDUALS WITH
HIGHER SUPPORT NEEDS WHO ARE IN
COMMUNITY-BASED LIVING PROGRAMS
WHO MIGHT BE CONSIDERED ON THE
FIRST CATEGORY OF BEING ABLE TO
QUALIFY TO GET A BOOSTER OR
VACCINE, BUT THE ACCESSIBILITY
TO MAKING THOSE APPOINTMENTS,
THERE'S SO MANY LOOPHOLES THAT
ARE INVOLVED WITH THAT.
TO MAKE AN APPOINTMENT TO GO
INTO A PHARMACY TO GET IT, THEY
HAVE TO ACTUALLY SCHEDULE TIME
WHERE THEY CAN ACTUALLY GO
OUTSIDE TO DO IT, SO IT MAKES IT
MORE DIFFICULT FOR A GROUP WHICH
IS HIGH VULNERABILITY THAT
SHOULD HAV EASIER ACCESS TO IT.
SO ANYWAYS, THAT WAS JUST KIND
OF MY POINT I WANTED TO BRING
UP.
I KNOW THE AUTISM SOCIETY OF
AMERICA HAS PUT OUT VACCINE
EDUCATION INITIATIVE.
SO FACILITY AFFILIATES HAVE
HOSTED VACCINE CLINICS FOR THEIR
FAMILIES AND ALSO INCLUDED SOME
RESOURCE MATERIALS LIKE
HEALTHCARE COMMUNICATION BOARDS
AND SOCIAL STORIES THAT ARE
RELATED TO LEARNING ABOUT COVID
AND THE VACCINE SAFETY AS WELL
AS THE EXPERIENCE AND ACCESS TO
IT.
>> THANK YOU, LINDSEY.
THAT IS GREAT THAT WE COULD
MENTION THAT.
I THINK IT WAS MEANT TO BE A
PART OF VACCINE DISTRIBUTION AND
UPTAKE.
CERTAINLY THERE ARE A LOT OF
ORGANIZATIONS THAT TRIED TO
CREATE SENSORY-FRIENDLY
VACCINATION AND SO FORTH, AND
THERE ARE LEARNINGS FROM THAT,
AND I BELIEVE ASAN ALSO PUT OUT
SOME VERY USEFUL INFORMATION FOR
PEOPLE WITH DISABILITIES ABOUT
GETTING VACCINATED AND COVID-19
MITIGATION, SO THANK YOU, WE CAN
CERTAINLY INCREASE THE
INFORMATION THAT WE HAVE ABOUT
THAT IN THE PLAN.
SOILY GO TO SAM NEXT, IN CASE,
BASED ON ASAN, IF YOU HAVE
ANYTHING ELSE TO SAY ON THAT OR
ANYTHING ELSE THAT YOU WANTED TO
MENTION.
>> I'M NOT AT ASAN ANYMORE.
>> I KNOW BUT I KNOW YOU KNOW
ALL ABOUT WHAT THEY'RE DOING.
>> THEY'RE DOING SOME REALLY
GREAT WORK AND I ABSOLUTELY
RECOMMEND THAT PEOPLE CHECK OUT
THEIR RESOURCES, MANY OF WHICH
ARE IN PLAIN LANGUAGE, ON THE
IMPORTANCE OF VACCINATION.
I SENT THIS IN TO THE TEXT
COMMENT TOO, SO PLEASE FEEL FREE
TO JUST NOT READ THAT ALOUD, BUT
I WANT TO TALK ABOUT THE EFFECTS
OF LONG COVID AND LONG TERM
COVID ON OUR POPULATION.
I THINK IT WOULD BE --
ESPECIALLY BECAUSE OUR
POPULATION TENDS TO HAVE A LOT
OF CO-OCCURRING DIAGNOSES, I
REALLY THINK IT WOULD BE WORTH
RESEARCHING WHETHER OR NOT WE'RE
MORE LIKELY TO EXPERIENCE LONG
COVID AND ALSO WHETHER OR NOT
THERE ARE DIFFERENCES IN HOW
LONG COVID MANIFESTS IN AUTISTIC
PEOPLE.
THERE MIGHT ALSO BE DIFFERENCES
IN HOW, TO DETECT LONG COVID,
ESPECIALLY IN PEOPLE WHO ARE
NON-SPEAKING, MIGHT NOT BE
NECESSARILY ABLE TO DESCRIBE
THEIR SYMPTOMS.
I KNOW ANECDOTALLY, THERE SEEMS
TO BE A PRETTY SIGNIFICANT LONG
COVID SORT OF OUTBREAK AMONG
AUTISTIC PEOPLE, MANY OF WHOM
ALREADY STRUGGLED WITH CHRONIC
FATIGUE AND CHRONIC PAIN.
SO I THINK IT'S REALLY WORTH
RESEARCHERRING.
>> THANK YOU, SAM, FOR THOSE
COMMENTS.
THAT'S GREAT TO THINK ABOUT THAT
TOO, WITH LONG COVID, AND I
THINK WE HAD A BRIEF MENTION
THAT COULD CERTAINLY ENCOURAGE
RESEARCH IN THAT AREA.
IVANOVA.
>> I DON'T KNOW WHY THAT
HAPPENED.
I APOLOGIZE.
>> IT'S OKAY.
NOT A PROBLEM.
SCOTT.
>> YEAH, I'M GLAD THAT SAM
BROUGHT UP LONG COVID, BECAUSE I
THINK WE SHOULD HAVE EXTENSIVE
MENTION ON THAT BECAUSE IT'S A
MAJOR PRIORITY HERE IN THE
FEDERAL GOVERNMENT.
LONG COVID IS NOW RECOGNIZED AS
A DISABILITY UNDER THE ADA AND
OTHER LAWS, FEDERAL AGENCIES AND
THE WHITE HOUSE HAVE EMPHASIZED
LONG COVID IN THE LAST YEAR,
YEAR AND A HALF, AND WE HAVE
DISCUSSED IT EXTENSIVELY HERE,
FOR INSTANCE, AT THE DEPARTMENT
OF LABOR, AND I THINK IF WE
COULD BOLSTER THAT A LITTLE BIT,
I CAN GET YOU SOME CITATIONS IF
THAT WOULD BE HELPFUL, SUSAN, AS
FAR AS THE FOCUS ACROSS THE
GOVERNMENT FOR LONG COVID.
I KNOW YOU PROBABLY ALREADY HAVE
SOME CITATIONS ALSO AT NIH OR
HHS OVERALL.
AND I THINK LIKE TRAUMA ON HERE
TOO, THAT THERE'S TRAUMA AND
BURNOUT AND JUST EXHAUSTION.
I KNOW AMONG THE GENERAL
POPULATION IN AMERICA AND
WORLDWIDE, BUT I THINK IT'S BEEN
EVEN GREATER IN TERMS OF THE
IMPACT FOR FOLKS WITH
DISABILITIES INCLUDING AUTISTIC
PEOPLE, AND THE TRANSITION BACK
TO, QUOTE-UNQUOTE, NORMAL LIFE
OR SOMETHING HAS BEEN HARD FOR A
LOT OF US, GIVEN THAT EMOTIONAL
IMPACT OVER THE LAST COUPLE
YEARS.
IT'S JUST BEEN VERY DIFFICULT ON
OUR SYSTEMS AS FAR AS
NEUROLOGICAL COGNITIVE
TRANSITIONING BACK TO GENERAL
SOCIAL LIFE, WHATEVER THAT IS.
I KNOW IT'S STILL GOING TO BE
DIFFERENT THAN 2019, BUT I THINK
THAT'S REALLY IMPORTANT, THAT
TRANSITION PROCESS FOR FOLKS,
AND WHAT IT MEANS FOR FUTURE
HEALTH EMERGENCIES, AND WE
SHOULD HAVE ACCESSIBILITY AND
RESOURCES ON DISABILITY MORE
BROADLY, AND MAYBE FOR AUTISTIC
PEOPLE ON PREPARATION FOR HEALTH
EMERGENCIES, AND INCLUDING
FUTURE POTENTIAL -- I HATE TO
SAY THIS, BUT POTENTIAL FUTURE
PANDEMICS BEYOND COVID, THIS
MIGHT HAPPEN AGAIN AND IF SO, WE
SHOULD BE PREPARED FOR THAT, AND
MORE READY THAN WE WERE IN 2020
IN TERMS OF NOT READY AT ALL AND
CERTAINLY NOT READY AT ALL ON
DISABILITY, AND WHAT WAS
MENTIONED ON ACCESS TO VACCINES,
JUST OTHER OUTREACH FOR COVID.
I THINK WE'VE HAD A LOT OF
MISSES FOR THAT.
I KNOW EVEN JUST RECEIVING THE
VACCINES WAS HARD FOR FOLKS,
TRANSPORTATION ACCESS AT TIMES
DURING THE COURSE OF THE
PANDEMIC.
THERE'S A LOT OF LESSONS LEARNED
ON THERE.
A LOT OF PEOPLE WITH
DISABILITIES, WE DON'T DRIVE, SO
GETTING OUT TO SOMEPLACE THAT'S
REALLY FAR AWAY IN THE MIDDLE OF
THE DAY WAS JUST HARD TO DO KIND
OF AT TIMES.
I DON'T THINK FOLKS RUNNING THE
SYSTEM, I KNOW THEY MEANT WELL
BUT DIDN'T UNDERSTAND THERE'S
BARRIERS AT TIMES AND THE
HOTLINES WERE NOT REALLY WELL
TRAINED ON DISABILITY, INCLUDING
PHYSICAL DISABILITIES LIKE
AUTISM.
SO I THINK IT'S SOMETHING OF
UTMOST IMPORTANCE.
AND I THINK JUST THE LESSONS
LEARNED ON COVID-19, POST COVID
COVID-19, THE RESEARCH
LITERATURE HAS SOME LITERATURE
ON AUTISM AND COVID BUT NOT AS
MUCH AS YOU WOULD HAVE EXPECTED
GIVEN HOW MUCH IT'S IMPACTED US
IN AMERICA AND WORLDWIDE OVER
THE LAST 2 1/2 YEARS.
THE RESEARCH LITERATURE IS NOT
NEARLY AS EXTENSIVE AS IT SHOULD
BE.
I DON'T KNOW WHETHER NIH HAS ANY
SPACE TO PRIORITIZE THAT AS
SOMETHING, I DON'T KNOW IF THAT
COULD BE PUT IN THE PLAN AS FAR
AS SORT OF A PRIORITY THREAD, IF
YOU WILL, FOR POST COVID AND FOR
FUTURE HEALTH EMERGENCIES IS
MORE RESEARCH KIND OF IN THAT
AREA.
THE IMPACT ON LIVED EXPERIENCE
AND YOU KNOW, THE POSITIVE
IMPACTS TOO, AS WAS MENTIONED BY
JENNIFER, IS IN SOME CASES HAS
OPENED DOORS TOO, SO I THINK
THERE SHOULD BE A BALANCE AT
TIMES, TELEWORKING HAS BEEN
HELPFUL FOR FOLKS FOR THE
WORKPLACE RKZ TELEHEALTH.
, TELEHEALTH.
SOME PREFER VIRTUAL OR HYBRID,
SOME OTHERS THRIVE BY IN-PERSON.
THAT'S SOMETHING WE'VE LEARNED
THROUGH THE PANDEMIC, THAT
TECHNOLOGY CAN BE MORE
EMPOWERING FOR FOLKS, SOMETIMES
SINCE THEY DON'T HAVE TO DEAL
WITH THE SENSORY ENVIRONMENT OF
THE PHYSICAL SPACE, BARRIERS
WHERE YOU CAN CONTROL THINGS
MORE AT MOMENT OKLAHOMA WITH
YOUR OWN ONLINE TECHNOLOGY.
BUT THAT DOESN'T WORK FOR SOME
OTHER FOLKS AS MUCH, RIGHT, SO I
THINK KEEP BE THAT IN MIND FOR
AUTISTIC PEOPLE, WE'RE LEARNING
ON THE BALANCE POINT FOR
COVID-19 ON HOW MUCH THINGS HAVE
CHANGED AND THE IMPACT ON
AUTISTIC PEOPLE.
THAT'S NOT BEEN RESEARCHED
REALLY AT ALL, IS THE -- IN
TERMS OF THE BENEFITS DURING
THIS PERIOD AND WHOO WE'VE
LEARNWHAT WE'VELEARNED AND HOW T
SHOULD BE FOR THE GESTALT FOR
AUTISTIC PEOPLE AND MORE ON
THESE BARRIERS, AS I SAID, ON
THE MENTAL HEALTH LONG TERM,
WHAT IT'S GOING TO MEAN FOR THE
IMPACT, HOW TO SUPPORT FOLKS AND
WHEN THEY HAVE TRAUMATIC
MEMORIES FROM THIS PERIOD AND
THINGS LIKE THAT, AND HOW TO
TREAT FOLKS RESPECTFULLY WITH
THE IMPACT IT'S HAD ON
DISRUPTING LIVES, DISRUPTING
SERVICES, ACCESS WAS MENTIONED
ON MEDICAID, HOME AND
COMMUNITY-BASED SERVICES.
I FORGOT TO MENTION THAT IN THE
EARLIER SERVICES SECTIONS, BUT I
THINK IF MAYBE -- IF YOU COULD
HAVE A LITTLE BIT -- IT BRINGS
TO MIND A LITTLE BIT OF
EXPANSION IN TERMS OF ON
MEDICAID, HCBS THROUGHOUT THE
PLAN ANYWAY AND THERE ARE SOME
OTHER CITATIONINGS I COULD SEND,
BUT I THINK THAT IMPACT FOR
AUTISTIC PEOPLE ON ACCESS TO
HCBS AND OTHER SUPPORTS IN THE
COMMUNITY AND WHAT THAT'S MEANT
IS REALLY IMPORTANT TO HAVE IN
THERE THAT'S REALLY
CRITICALLY -- DISRUPTION -- JUST
AS MUCH AS A DISRUPTION ON
EDUCATION, IT'S IMPORTANT FOR
THE PANDEMIC, SO -- BUT I THINK
IT'S A GOOD START FROM WHAT'S IN
HERE.
I THINK IT JUST COULD BE
EXPANDED A LITTLE BIT.
I THINK WE DO HAVE CITATIONS FOR
SOME OF THESE FOCUSES, AT LEAST.
I KNOW BURNOUT TRAUMA KIND OF
AREA, THAT'S GOING TO BE A PLACE
WHERE I DON'T EVEN KNOW IF I CAN
GET YOU A REPORT ON THAT ONLINE,
I'LL SEE IF THERE'S ANYTHING WE
CAN CITE ON THERE.
SOME OF THOSE ARE JUST GAPS THAT
HAVE BEEN MISSED BY RESEARCHERS.
>> ESPECIALLY IF YOU HAVE
ANYTHING ON THE BENEFITS OF,
SAY, REMOTE WORK OR REMOTE
COMMUNICATION, THAT WOULD BE
GREAT, AND I KNOW WE ASKED
EARLIER FOR ANY CITATIONS THAT
HAVE TO DO WITH TELEHEALTH AND
HOW THAT'S BEEN UTILIZED.
BUT THAT'S A GOOD POINT TO BRING
OUT THE POSITIVES.
I KNOW THE SIMONS FOUNDATION,
THE SPARC REPORT MENTIONED --
ONE OF THEIR REPORTS MENTIONED
SOME OF THE POSITIVE --
>> CAN BE -- DISABILITY AT TIMES
IF WE DON'T HAVE AUTISM, ARE YOU
ABLE TO SOMETIMES CITE
DISABILITY ONES?
>> WE CAN CITE THINGS THAT GO
ACROSS DISABILITIES AND APPLIES
TO AUTISM AS WELL.
>> COOL.
>> SO STEVEN, DO YOU HAVE A
WRITTEN COMMENT?
>> GOOD AFTERNOON.
THIS IS A COMMENT/QUESTION FROM
YETTA MYRICK.
THE FIRST ONE IS, IS THERE
ANYTHING ABOUT THE LOSS OF
CAREGIVERS DUE TO COVID-19 AS IT
RELATES TO SUPPORTS OF AUTISTIC
INDIVIDUALS?
NEXT COMMENT IS ASKING ABOUT
ANYTHING ABOUT HOW SCHOOL
CLOSURES HAVE IMPACTED AUTISTIC
STUDENTS' PROGRESS, AND THE LAST
QUESTION IS ANYTHING ON
TELEHEALTH.
>> SO I KNOW WE HAVE PLANS TO
INCLUDE THINGS ABOUT TELEHEALTH
AND THE IMPACT OF WHAT'S
HAPPENED WITH SCHOOLS AND ACCESS
TO EDUCATION, BUT I DON'T THINK
WE HAVE ANY INFORMATION ABOUT
THE LOSS OF CAREGIVERS.
IF YOU HAVE ANY RESOURCES ON
THAT, SEND TO US.
BUT I'M SURE THAT THAT HAS HAD
AN IMPACT ON MANY PEOPLE.NA DO ?
>> I WAS JUST GOING TO BRING UP,
YOU KNOW, THE LOSS OF SPECIAL
EDUCATION SERVICES THROUGHOUT
THE LOCKDOWN.
AND THE STUDENTS WHO, BECAUSE OF
CO-OCCURRING CONDITIONS, CAN
STILL NOT RETURN TO SCHOOL
BECAUSE WE LIFTED THE MASK
MANDATE.
HOW WE'RE GOING TO ADDRESS THEIR
LOST EDUCATIONAL OPPORTUNITIES.
>> DEFINITELY.
THAT IS AN IMPORTANT ONE THAT WE
WILL BE SURE TO ADDRESS.
SO ANY OTHER FINAL COMMENTS OR
IS THERE ANYBODY THAT HAS NOT
SPOKEN SO FAR?
SCOTT, I DON'T KNOW IF YOUR HAND
IS STILL UP?
YEAH, I THINK YOUR HAND WAS
STILL UP.
WAS THERE ANYBODY WHO HAS NOT
HAD A CHANCE TO TALK TODAY OR
TALK YESTERDAY THAT HAS A
COMMENT ABOUT ANY OF THESE
ANYTHING ELSE ON COVID-19 OR ANY
OTHER TOPICS?
OKAY.
SO IT SOUNDS LIKE WE PROBABLY
COVERED -- HAVE THE SOMETHING
ELSE THAT SOMEONE WANTS TO
SHARE?
>> I HAD A LITTLE THING THAT'S
TELLING ME TO UNMUTE.
I DON'T KNOW IF SOMEBODY WANTED
ME TO UNMUTE OR NOT.
>> MAYBE IT GOT PRESSED BY
ACCIDENT.
>> I JUST -- I WILL SAY THAT I
JUST AM REALLY PASSIONATE ABOUT
MAKING SURE THAT WE DON'T
RE-TRAUMATIZE PEOPLE, AND WE
HELP PEOPLE HEAL FROM THIS
TRAUMATIC EXPERIENCE.
>> THANK YOU, IVANOVA.
SO THAT'S A GOOD NOTE TO END ON
WITH COVID-19.
SO THEN I WILL -- OH, SCOTT, DO
YOU HAVE ANOTHER COMMENT?
>> JUST BRIEFLY, WHEN YOU ASKED
OUT ABOUT ANYTHING ELSE, IT JUST
ALSO BROUGHT TO MIND TOO, FOR
ME, SORRY, I DON'T HAVE MY
CAMERA, IS THE -- AND I THINK IT
RELATES TO COVID-19 BUT MAYBE
SOME OF THESE OTHER AREAS, IS
COGNITIVE ACCESSIBILITY OF
INFORMATIONAL RESOURCES TOO,
THAT IT'S WRITTEN IN A WAY WHERE
IT MAKES SENSE TO FOLKS IN MORE
PLAIN ENGLISH, DIRECT ENGLISH.
THE DIRECT LANGUAGE.
IT'S AN ISSUE FOR COVID-19, AND
IT'S AN ISSUE FOR SOME OF THESE
OTHER FOCUSES, IS THAT A LOT OF
MATERIALS FRANKLY ARE NOT
ACCESSIBLE TO AUTISTIC PEOPLE,
AND FOLKS WITH OTHER COGNITIVE
DISABILITIES, AND I THINK IF WE
COULD PUT THAT IN HERE OR MAYBE
ALSO OTHER PARTS, STRATEGIC PLAN
THAT NEEDS TO BE MORE FOCUSED ON
THAT COGNITIVE ACCESSIBILITY
AREA FOR MATERIALS AND LAY
SUMMARIES AND THINGS LIKE THAT
IN RESEARCH, AND WHEN WE ENGAGE
IN PROJECTS.
I THINK IT SOMETIMES IS THIS
EXTRA BARRIER AS FAR AS ACCESS,
AND THEN FOLKS JUST DON'T --
THEY DON'T GET THE BIG PICTURE
KIND OF ON THAT, AND THEN
THEY'RE CONFUSED WHY THEY CAN'T
GET DIVERSE SAMPLES OR THEY
CAN'T -- OR FOLKS ARE JUST NOT
UNDERSTANDING THINGS AND THEY
DON'T REALIZE THAT SOMETIMES
THEY'RE WRITING THESE 90-WORD
SENTENCES THAT ARE FULL OF
COMPLEX LINGO THAT JUST CREATE
EXTRA CHALLENGES FOR FOLKS TO
ACCESS THAT I -- THAT WE NEED TO
MAKE MORE STRIDES ON THAT AS FAR
AS MAKING SURE INFO AND -- WHEN
WE WRITE MATERIALS SO DOCUMENTS
ARE ACCESSIBLE TO FOLKS, THAT WE
DISTILL THINGS DOWN AND ADD IN
SUMMARIES TO MAKE SURE FOLKS
HAVE EQUAL ACCESS TO
INFORMATION.
THAT'S BEEN UNDER DID YOU
STUDIED TUNDERSTUDIED TOO ANDTHS
ABOUT HOW THEY PRESENT
INFORMATION AT TIMES.
THERE'S ALMOST LIKE A GATE
KEEPING, IT'S NOT ALWAYS
INTENTIONAL BUT IT COMES OUT
LIKE THAT, BY USING CERTAIN
FORMS OF COMPLEX LANGUAGE,
THEY'RE SORT OF RESTRICTING THE
ABILITY FOR FOLKS TO HAVE ACCESS
TO INFORMATION AND RESOURCES,
AND I THINK SOMETIMES FOLKS JUST
NEED TO HAVE MORE AWARENESS AND
UNDERSTANDING THAT THAT'S AN
ISSUE OUT THERE AND MAKE SOME
STRIDES ON THAT FOR, AGAIN, LAY
SUMMARIES, PLAINER LANGUAGE AND
SUPPORTING THAT COGNITIVE ACCESS
FOR FOLKS WHO MAY THINK
DIFFERENTLY, LEARN DIFFERENTLY,
AND FOR INSTANCE, FOR FOLKS WITH
INTERINTELLECTUAL DISABILITIES O
HAVE EQUAL ACCESS TO MATERIALS.
>> THANK YOU, THAT'S A VERY
IMPORTANT POINT AND A
CROSS-CUTTING POINT THAT HAS
GONE THROUGH THE VARIOUS ASPECTS
OF WHAT WE'VE DISCUSSED TODAY.
NOW IT'S OUR TEAM'S JOB TO TRY
TO DISTILL SOME OF THIS
INFORMATION AND GET IT INTO A
FORMAT THAT'S READABLE AND
UNDERSTANDABLE AND AS YOU CAN
TELL, THOSE OF YOU WHO HAVE BEEN
WITH US THESE PAST TWO DAYS,
WE'VE COVERED A LOT OF TERRITORY
AND THERE WAS ALREADY QUITE A
BIT IN THE PLAN BUT WE'RE GOING
TO BE ABLE TO TRY TO DISTILL
SOME OF IT DOWN SO THAT IT CAN
BE PRESENTED IN AN
UNDERSTANDABLE WAY FOR PEOPLE TO
ACCESS.
SO THANK YOU FOR BRINGING THAT
UP.
AND STEVEN, I SAW YOU HAD A HAND
RAISED BUT DID THAT GET RESOLVED
OR IS THERE ANYTHING ELSE?
>> I JUST WANTED TO MAKE NOTE OF
A COUPLE REFERENCES THAT
MITCHELL PUT IN THE CHAT.
>> OKAY.
THANK YOU.
DO YOU WANT TO MENTION WHAT THE
TOPICS ARE?
>> IF MITCHELL IS STILL ON, HE
CAN, BUT THERE'S ONE FROM AUTISM
SPEAKS ABOUT A SURVEY FOR
WIDESPREAD CHALLENGES IN THE
AUTISM COMMUNITY AND WIDER
DISPARITIES, AND THEN THERE WAS
A JOURNAL FROM SPRINGER THAT
SAYS -- THAT TALKS ABOUT AUTISM
AND CAREGIVER IMPACT FROM
COVID-19.
>> OKAY.
THANK YOU.
SO GREAT WORK, EVERYONE, ON
SHARING THIS FEEDBACK.
THIS IS REALLY HELPFUL TO HEAR
FROM YOU AND IT WILL GIVE US A
LOT OF ADDITIONAL INFORMATION
THAT WE CAN TRY TO WORK INTO THE
DRAFT.
SO AS YOU KNOW, THE STRATEGIC
PLAN IS AN ADVISORY DOCUMENT,
AND WE ARE GOING TO BE USING THE
FEEDBACK THAT YOU'VE SHARED
TODAY TO HELP US REVISE IT.
SO THE NEXT STEPS ARE FEEDBACK
THAT WE'VE COLLECTED, WE WILL
TRY TO INCORPORATE THAT INTO
WHAT WE HAVE AND REVISE IT AND
ALSO MAKE IT INTO MORE OF A
PLAIN LANGUAGE FORMAT.
AND IACC MEMBERS AFTER TODAY ARE
GOING TO RECEIVE A SURVEY THAT
WILL SHARE WITH YOU SOME OF THE
WORDING FOR THE MISSION AND
VISION STATEMENT.
WE COMBINED THAT INTO ONE
BECAUSE THE SEPARATE MISSION AND
VISION SOUNDED LIKE THEY
OVERLAPPED AND SO THEY WERE JUST
COMBINED INTO ONE.
AND A REVISED SET OF CORE VALUES
THAT REFLECTS SOME OF THE KINDS
OF THINGS THAT WE'VE TALKED
ABOUT OVER THE LAST YEAR AS A
COMMITTEE, TRYING TO CAPTURE
SOME OF THE ETHOS OF THIS
COMMITTEE AND WHAT YOU'D LIKE TO
SEE, I THINK THAT WE HADN'T
ACTUALLY REVISED THE CORE VALUES
IN QUITE A FEW YEARS.
SO WE HAVE A REVISED SET OF
THOSE, AND WE WILL PROVIDE THE
QUESTION TEXT AND THE
ASPIRATIONAL GOAL TEXT, AND GIVE
YOU AN OPPORTUNITY TO REVIEW
THOSE AND MAKE ANY COMMENTS.
AND YOU CAN ALSO PROVIDE US
COMMENTS ON THE DRAFTS THAT ARE
OUT THERE, IF YOU HAVE ANY.
WE DIDN'T PROVIDE WORD DOCUMENTS
FOR EVERYBODY TO DO LINE EDIT
BECAUSE GETTING LINE EDITS FROM
44 PEOPLE WOULD JUST BE A LITTLE
BIT OVERWHELMING AND PERHAPS NOT
A PRODUCTIVE WAY TO GO, BUT
YOU'VE ALL HAD AN OPPORTUNITY TO
SHARE SOME OF YOUR MOST
IMPORTANT AREAS TODAY AND
YESTERDAY IN OUR MEETING, SO A
LOT OF THE POINT THAT YOU WANTED
TO MAKE, YOU'VE MADE, BULL IF
YOU SEE ADDITIONAL THINGS THAT
YOU WOULD LIKE TO POINT OUT OR
IF YOU WANT TO SEND US
REFERENCES, YOU'LL HAVE A SPACE
IN THE SURVEY THAT YOU CAN SEND
THOSE TO US AND WE'LL USE TO
REVISE THE DRAFT SO THAT IT'S
EVEN MORE REFLECTIVE OF THE
THOUGHTS AND IDEAS OF THIS
COMMITTEE, AND WE WILL SEND TO
YOU AT THE BEGINNING OF OCTOBER
IN PREPARATION FOR OUR MEETING
ON OCTOBER 26TH, WHICH WILL BE
EITHER A HYBRID MEETING WHERE
THE COMMITTEE WILL BE IN PERSON
AND OUR AWD YENTS WI AUDIENCE WN
VIRTUAL OR IT WILL BE ALL
VIRTUAL.
WE'RE JUST NOT REALLY SURE WHAT
SPACE MIGHT BE AVAILABLE AND
WHAT KINDS OF RESTRICTIONS THERE
MIGHT BE.
SO WE CAN'T SAY YET AS TO
WHETHER IT'S GOING TO BE IN
PERSON OR VIRTUAL.
BUT IF IT IS IN PERSON, ONLY THE
COMMITTEE WILL BE IN THE ROOM
BECAUSE THE COMMITTEE IS ALREADY
LARGE AND THERE ARE SOME SPACE
RESTRICTIONS NOW DUE TO COVID.
AND WE WILL DISCUSS THE PLAN IN
OCTOBER AND WE HOPE THAT IT'S IN
SHAPE THAT PERHAPS THE COMMITTEE
MIGHT BE ABLE TO APPROVE IT WITH
SOME CHANGES.
AND IF FOR SOME REAOWN IT'S NOTO
GETGET IT APPROVED.
WE WOULD LOVE TO GET IT OUT THIS
CALENDAR YEAR SO IT CAN BE
APPROVED BY THEN BUT AT THE
LATEST, WE WANT TO GET IT OUT AT
THE VERY BEGINNING OF 2023,
BECAUSE WE WANT TO BE OUT THERE,
EFFECTIVE AND BEING USED BY
AGENCIES AND OTHER
ORGANIZATIONS.
>> I JUST WANT TO THANK YOU,
SUSAN, AND YOUR TEAM.
THIS WAS A VERY PRODUCTIVE
PROCESS, AND I APPRECIATED THE
SUPPORT AND THE ORGANIZATION.
THANKS.
>> THANK YOU.
I FEEL LIKE IT'S BEEN A GREAT
MEETING IN TERMS OF YOUR
PARTICIPATION, EVERYBODY HAS
BEEN VERY FORTHCOMING WITH YOUR
THOUGHTS AND IDEAS, AND HELPFUL
WITH REFERENCES AND I APPRECIATE
THAT EVERYONE HAS BEEN REALLY
RESPECTFUL OF TIME AND TRYING TO
TAKE TURNS SO THAT WE CAN HEAR
FROM EVERYONE THAT WANTED TO
SPEAK.
BUT OF COURSE WE WILL HAVE A
WRITTEN OPPORTUNITY.
I KNOW SOME PEOPLE LIKE TO HAVE
AN OPPORTUNITY TO REFLECT.
I ALSO WILL BE SENDING YOU
INFORMATION ABOUT THE 2021
SUMMARY OF ADVANCES WHICH AT THE
APRIL MEETING WE DIDN'T GET
THROUGH TALKING ABOUT ALL THE
SUBMITTED NOMINATIONS, AND
WHETHER YOU HAD ANY FEEDBACK ON
THEM.
SO WE'RE GOING TO TAKE THOSE VIA
EMAIL AND PUT THEM INTO A FORMAT
SO THAT YOU CAN SEE THEM WHEN
YOU VOTE AND WE WILL ALSO VAIR
THOSE DOCUMENTS ON THE WEBSITE
SO THE PUBLIC HAS ACCESS.
WE DIDN'T REALLY WANT TO WAIT
UNTIL THE OCTOBER MEETING TO
MOVE FORWARD ON IT.
SO YOU'LL BE RECEIVING THAT AS
WELL TO FILL OUT.
SO WITH THAT, I'D ALSO LIKE TO
SAY THANK YOU TO THE OARC STAFF
FOR ALL THEIR HELP IN PUTTING
THIS MEETING TOGETHER.
THERE WAS A LOT OF WORK BEHIND
THE SEEPS, PRBEHINDTHE SCENES, E
DRAFTS, PREPARING THE SLIDES,
DISCUSSING THE ISSUES IN A LOT
OF DETAIL TO TRY TO CAPTURE WHAT
WE THINK IS NEW BASED ON THE
DISCUSSIONS WE'VE HAD WITH YOU
AND WITH FEDERAL AGENCIES, SO I
REALLY APPRECIATE ALL THE WORK
THAT'S GONE INTO ALL OF THIS,
AND THE WEBSITE.
SO THANK YOU TO THE STAFF, THANK
YOU TO THE ROSE LE AND
ASSOCIATES TEAM THAT IS OUR NEW
CONTRACTING AND TO NIH VIDEOCAST
FOR HELPING US WITH BROADCASTING
THIS SO PEOPLE IN THE PUBLIC
COULD ACCESS IT AND IT WILL BE
RECORDED AND PUT UP ON THE WEB
FOR EVERYONE TO ACCESS.
SO I AM WISHING EVERYONE A GREAT
SUMMER.
I HOPE EVERYONE IS ABLE TO GET A
LITTLE BIT OF REST AND
RELAXATION OTHER OVER THE SUMM,
THOUGH I KNOW WE'RE BUSY AND
WORKING ON A LOT OF IMPORTANT
ISSUES, BUT I HOPE PEOPLE WILL
TAKE TIME FOR YOUR FAMILY,
FRIENDS AND SOME TIME FOR
YOURSELF.
AND ARE THERE ANY LAST COMMENTS
BEFORE WE COMPLETE OUR MEETING
FOR TODAY?
SCOTT?
>> I JUST WANT TO SAY, SUSAN,
THANK YOU ALL, NIH, FOR
SPEARHEADING THE WORK OF THE
COMMITTEE AND THIS WORK GROUP
SESSION OVER YESTERDAY AND
TODAY.
I KNOW IT'S VERY COMPLEX AS FAR
AS A LOT OF DIFFERENT DIVERSE
THOUGHTS AND IDEAS AND YOU ALL
DO AN AMAZING JOB PUTTING THIS
ALL TOGETHER.
AND TAKING INPUT FROM DIFFERENT
DIVERSE VIEWPOINTS AND PUTTING
THAT TOGETHER TO HELP ENHANCE
THE STRATEGIC PLAN.
SO I HOPE YOU ALL KNOW THAT
WE -- I DON'T WANT TO SPEAK FOR
OTHERS, BUT LIKE, I KNOW ON MY
END, WE'VE DEFINITELY VERY
VALUED YOU ALL AS A SISTER
AGENCY AND THE WORK YOU ALL DO
FOR THE COORDINATION HERE OF THE
COMMITTEE AND HOW IMPORTANT IT
IS TO OUR STAKEHOLDERS OUT
THERE, THE WORK WE DO WITH THE
IACC, AND THE EFFORT THAT'S PUT
INTO HELPING SHAPE THE STRATEGIC
PLAN AND THE IMPACT IT HAS FOR
FOLKS.
I'M NOT SURE IF EVERYONE ALWAYS
UNDERSTANDS THAT WHEN THEY SEE
THE PLAN AND SOME OF THESE OTHER
DOCUMENTS COME OUT THAT THE
TREMENDOUS WORK THAT GOES INTO
THIS AND THE WORK THAT YOU ALL
DO BEHIND THE SCENES TO MAKE ALL
THIS HAPPEN AND TO MAKE THE
TRAINS RUN, IF YOU WILL, RUN
SMOOTHLY FOR THIS PROCESS, AND
I'M VERY GLAD THAT THIS HAS
WORKED SO WELL AND APPRECIATE
THE OPPORTUNITY TO GIVE INPUT.
AND I'LL BE SENDING YOU SOME --
AS I SAY, SOME MORE CITATIONS
AND LITERATURE AND FEEL FREE,
ESPECIALLY ON THE SOCIAL SCIENCE
END, I HAVE PRETTY EXTENSIVE
ACADEMIC ACCESS, SO I'D BE HAPPY
TO -- ANYTHING YOU NEED A FULL
TEXT FOR, WE'LL GET YOU.
>> THANK YOU SO MUCH, AND WE
REALLY APPRECIATE THE
PARTNERSHIP OF ALL OUR SISTER
AGENCIES AND ALL THE MEMBERS OF
OUR COMMITTEE, PEOPLE IN THE
STAKEHOLDER COMMUNITY THAT INTRN
REHAVEBEEN REALLY THOUGHTFUL ABT
SHARING INPUT WITH US.
EVERY SINGLE MEMBER OF THE
COMMITTEE WHO'S SPOKEN IN THE
LAST TWO DAYS, WE REALLY
APPRECIATE EVERYTHING YOU
SHARED.
IT WAS ALL VERY IMPORTANT AND WE
HOPE TO DO JUSTICE TO YOUR IDEAS
AND GET THEM INCLUDED IN THE
PLAN.
SO THANK YOU SO MUCH FOR YOUR
ATTENDANCE AND PAY EXCELLENCE
AND PARTICIPATION.
WE JUST REALLY APPLAUD YOU FOR
YOUR WORK.
SO THANK YOU, AND HAVE A
WONDERFUL AFTERNOON.
GOODBYE, EVERYBODY.