>> WE'RE PLEASED TO WELCOME
MEMBERS OF THE PUBLIC AS WELL AS
THOSE WATCHING.
IT'S MY PLEASURE TO GIVE YOU AN
OUTDATE ON WHAT WE ARE GOING TO
DO AND INTRODUCE NEW MEMBERS OF
THE IACC AND I'LL TURN IT OVER
TO SUSAN DANIELS.
WELCOME SOME MEMBERS WHO ARE NEW
WE'RE PLEASED TO HAVE A
REPRESENTATIVE FROM THE
DEPARTMENT OF JUSTICE JOIN US ON
THE IACC.
WOULD YOU LIKE TO SAY WORDS TO
INTRODUCE YOURSELF, BROOK.
WE DO BRIDGING AND LAW
ENFORCEMENT AND BEHAVIORAL
HEALTH CROSS-COLLABORATION
STUFF.
THANK YOU SO MUCH.
>> THANK YOU, BROOK AND FOR
BEING AN EXCELLENT DEMONSTRATOR
IN USE THE MIC AND SPEAK INTO
THE MICROPHONE NOT ONLY PEOPLE
IN THE ROOM CAN HEAR YOU BUT
MEMBERS AND PUBLIC ONLINE.
I WANT TO INTRODUCE MARIA FRYER
WHO FORMALLY INTRODUCE THE
DEPARTMENT.
AND NEXT PETER KAVULIC.
WE'LL ASK CHRISTY TO INTRODUCE
HERSELF LATER ON.
I'LL ACKNOWLEDGE DR. LARRY
WEXLER.
MOST OF US AROUND THE TABLE KNOW
VERY WELL BECAUSE HE'S THE
LONGEST SERVING MEMBER OF THE
IACC.
HE RETIRED JUST A FEW MONTHS AGO
AFTER THE LAST MEETING AND I
NEED TO ACKNOWLEDGE AT THE LAST
MEETING LARRY HAD A VALUABLE
MEMBER OF THE COMMITTEE.
>> I'M CHRISTY KAVULIC WITHIN
THE DEPARTMENT OF EDUCATION AND
SERVED AS THE ALTERNATE UNDER
DR. WEXLER.
>> NICE TO HAVE YOU JOIN US
TODAY.
ANOTHER RECENT ADDITION TO THE
IACC IS CAMILLE PROCTOR.
SHE DIDN'T HAVE A CHANCE TO
INTRODUCE HERSELF.
>> NOT HERE YET.
>> WE'LL HAVE HER INTRODUCE
HERSELF.
THERE'S ANOTHER NEW MEMBER,
DR. DR. BERTAGNOLLI THE NEW
DIRECTOR OF THE NATIONAL
INSTITUTE OF CANCER.
USUALLY THE DIRECTOR IS
REPRESENTED BY AN ALTERNATE BUT
WANTED TO COME MEET YOU ALL AND
ADDRESS YOU THIS MORNING AND
ADDRESS YOU IN MINUTES.
BEFORE WE HAVE COMMITTEE MEMBER
NEWS.
DR. SIEGEL HAS BEEN APPOINTED TO
THE CHIEF OF CLINICAL ENTERPRISE
AT CHILDREN'S BOSTON HOSPITAL
AND THE OFFICER AT FRANCISCAN
CHILDREN'S AND IS NOT HERE
TODAY.
WE WISH HIM THE BEST IN HIS NEW
ROLE.
BEFORE TURNING IT OVER TO JUNES
FOR THE MORNING BUSINESS I WANT
TO ACKNOWLEDGE WE HAVE AN
EXCITING AGENDA FOR THE REST OF
THE DAY.
WE'RE GOING TO HEAR A
PRESENTATION FROM THE FEDERAL
INTERAGENCY WORK GROUP ON
AUTISM.
THAT IS THE GROUP THAT SUSAN AND
HER CAPACITY AS THE NATIONAL
AUTISM COORDINATOR CONVENES TO
MAKE SURE OUR FEDERAL AGENCIES
FOLLOW-UP ON THE RECOMMENDATIONS
OF THIS ORGANIZATION.
THEY'LL PRESENT ON THE AUTISM
SPACE AND HOW THE GROUP WORKS
TOGETHER ON HOW TO SET FORTH FOR
US AND DISCUSS BUSINESS THIS
AFTERNOON AND HAVE PUBLIC
COMMENTS AND DISCUSS THEM AND
HAVE A PANEL ON JUSTICE AND LAW
ENFORCEMENT ISSUES.
WITH THAT I'LL TURN IT OVER TO
SUSAN WHO WILL MAKE HOUSEKEEPING
ANNOUNCEMENTS BEFORE WE END WITH
THE PROGRAM.
>> GOOD MORNING AND WELCOME.
IT'S GREAT TO SEE MANY OF YOU
HERE AND WELCOME TO THE PUBLIC
WATCHING US.
WE HAVE AN EXCITING AGENDA
PREPARED.
NEXT I'M GOING TO TAKE
ATTENDANCE OFFICIALLY TO KNOW
WHO'S HERE.
I'LL GO THROUGH --
>> ALICE ATTENDING ON BEHALF OF
DR. BIANCHI.
>> THANK YOU, ALICE.
AMANDA BRIANS FROM THE
ADMINISTRATION [INDISCERNIBLE]
CHILDREN AND FAMILIES.
MITCHELL BURGER FROM SAMHSA AS
ALTERNATE.
>> DIVISION OF PSYCHIATRY AND
I'LL BE IN AND OUT TODAY SO MY
ALTERNATE IS ON THE LINE AS
WELL.
>> HI, GOOD MORNING,AL.
-- ALL.
>> JOHNSON FROM ACL.
OR AMANDA REEKER.
CHRISTY HARDY.
>> I'M HERE FOR DR. KOROSHETZ.
>> THANK YOU.
>> IF YOU'RE SPEAKING IN THE MIC
KEEP IT CLOSE.
>> ALLISON FROM SSA AND WE HAVE
A NEW ALTERNATE HEATHER GOMEZ
BENDANA WHO WILL BE MY NEW
ALTERNATE AND SHE IS LISTENING
IN BUT I'LL BE HEAR THE WHOLE
MEETING BUT WANT TO ACKNOWLEDGE
HER AND WELCOME HER.
>> THE VA IS ALSO REPRESENTED.
>> GOOD MORNING.
>> BOBBY SITTING IN FOR BARBARA
ROLLAND.
>> CAP LIN.
>> PRESENT.
>> NICOLE WILLIAMS.
>> HI, GOOD MORNING, EVERYBODY.
>> GOOD MORNING, SCOTT FROM THE
OFFICE OF DISABILITY AND POLICY.
THANKS.
>> RICK WOYCHIK, I MADE A
COMMITMENT TO MAKE REMARKS AT A
COUNCIL AND I'LL BE BRIEFED ON
THE MEETING.
>> THANK YOU SO MUCH.
NOW PUBLIC MEMBERS.
>> I HAD A BAD DISABILITY DAY
TODAY.
>> DICKERSON.
>> I'M HERE.
>> FREDDY JOHNSON.
>> I'M HERE.
>> GOOD MORNING, I'M HERE.
>> PRESENT, GOOD MORNING,
EVERYONE.
>> I APOLOGIZE.
MY CAMERA'S NOT WORKING.
I AM HERE.
>> NO PROBLEM.
THANK YOU, IVANOVA.
>> HI.
>> GOOD MORNING, EVERYONE.
>> PRESENT.
>> AND LAST.
>> GOOD MORNING.
>> IS THERE ANYONE I DOESN'T
READ OFF.
>> I'M FROM THE DEPARTMENT OF
HOUSING AND URBAN DEVELOPMENT.
I THINK I WAS CALLED EARLIER BUT
HAVING TROUBLE WITH MY AUDIO.
>> IESHA DICKERSON FROM THE
BLOOMBERG SCHOOL OF PUBLIC
HEALTH.
>> I'M SORRY I DIDN'T THE TIME
TO READ EVERYONE'S TITLES.
EVERYBODY'S ONLINE THOUGH.
YOU CAN SEE ALL THE INFORMATION
THERE.
IT'S A FANTASTIC GROUP OF PEOPLE
THAT HAVE DEDICATED THEIR TIME.
NEXT I WOULD LIKE TO TURN OUR
ATTENTION TO OCTOBER 11.
DOES ANYONE HAVE COMMENTS ABOUT
THE DRAFT?
>> ON THE ROUND ROBIN NOTES D.C.
FAMILY VOICES AND IT WAS
NATIONAL.
I WANT TO MAKE SURE THAT IS
CORRECTED ON THE NOTES.
>> THANK YOU SO MUCH.
SOMEBODY FROM OUR TEAM HAS IT
CORRECTED.
ANYTHING ELSE?
>> WELL, IF THERE ARE NO
COMMENTS ON THE MINUTES, CAN I
GET A MOTION ON THE FLOOR FOR
SEVEN MINUTES.
>> I CAN PUT A MOTION FORWARD.
>> ACCEPT THE MOTION?
ARE THERE ANY OPPOSED TO
ACCEPTING THE MINUTES OR
CORRECTION?
ANYONE ABSTAINING?
WITH THAT IT LOOKS LIKE WE'LL BE
ACCEPTING THE MINUTES AND IF
THERE'S MINOR CORRECTIONS CAN WE
CONTACT THE OFFICE AND WE'LL GET
IT TAKEN CARE OF.
THANK YOU SO MUCH.
WITH THAT WE HAVE HOUSEKEEPING
ANNOUNCEMENT S
IN ORDER TO MAKE SURE THAT
EVERYONE HAS THE OPPORTUNITY TO
SPEAK DURING COMMITTEE
DISCUSSIONS, IT WILL BE
IMPORTANT FOR ALL OF US TO RAISE
OUR HANDS EITHER PHYSICALLY OR
IN ZOOM, USING THE RAISE HANDS
FEATURE. WE WILL DO OUR BEST TO
MAKE SURE THAT EVERYONE HAS A
TURN TO SPEAK AS TIME ALLOWS.
PLEASE KEEP YOUR COMMENTS BRIEF
SO THAT WE CAN GIVE AS MANY
PEOPLE A TURN TO SPEAK AS
POSSIBLE.
TO THOSE HERE IN THE ROOM,
PLEASE TURN ON YOUR TABLETOP
MICROPHONE WHEN YOU ARE SPEAKING
AND TURN IT OFF WHEN YOU ARE
DONE. SINCE WE HAVE PARTICIPANTS
AND AUDIENCE MEMBERS JOINING US
VIRTUALLY, WE WANT TO BE SURE
THAT EVERYONE CAN HEAR YOU. IF
YOU ARE HERE IN PERSON AND ALSO
SIGNED INTO ZOOM, PLEASE BE SURE
TO MUTE THE AUDIO ON YOUR DEVICE
TO PREVENT ECHOES OR FEEDBACK.
FOR THOSE OF YOU JOINING US
VIRTUALLY BY ZOOM, PLEASE KEEP
YOURSELF MUTED AND YOUR CAMERA
OFF DURING PRESENTATIONS AND
BREAKS. DURING COMMITTEE
DISCUSSIONS, YOU ARE WELCOME TO
TURN ON YOUR CAMERAS AND UNMUTE
YOURSELF TO SPEAK.
>> WE'RE HEARING THE PEOPLE ON
THE PHONE ARE GETTING A LOT OF
REBOUNDING BECAUSE THEY'RE
GETTING ERRATIC FEEDBACK.
IT IS NOW BUT IT WASN'T BEFORE.
YOU HAVE TO REALLY LEAN IN.
>> ALL RIGHT.
I THINK IT'S ALL I HAVE AND I'M
GOING TO TURN IT BACK OVER TO
JOSH GORDON.
>> THANK YOU AGAIN.
WELCOME DR. MONICA BERTAGNOLLI
TO THE XT TODAY.
AS THE 17th DIRECTOR OF THE
NATIONAL INSTITUTE SHE ASSUMES
THE SEAT MAYBE LATER THOUGH SHE
HAD TO BE ELSEWHERE SHE INSISTED
IN BEING HERE TODAY AND HEAR THE
BUSINESS WE DO AND SPEAK ABOUT
THE ROLE HERE.
DR. BERTAGNOLLI HAS BEEN AN
AMAZING SURGICAL ONCOLOGIST
MAKING FANTASTIC CONTRIBUTIONS
TO REDUCE THE BURDEN OF CANCERS.
SHE'S BEEN AN IMMENSE
CONTRIBUTOR TO THE AREA OF
CLINICAL TRIALS GENERALLY AND
FOR A YEAR OR MORE SERVED AS THE
DIRECTOR OF THE NATIONAL CANCER
INSTITUTE FOR PRESIDENT BIDEN
ASKED HER TO TAKE ON THE ROLE OF
THE DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH AND I'M NOT
GOING TO TAKE ANY MORE OF HER
TIME.
I'LL LET HER INTRODUCE HERSELF.
>> THANK YOU SO MUCH,
DR. GORDON.
>> GOOD MORNING, I'M THRILLED TO
BE HERE AND I HAVE THE
TREMENDOUS HONOR OF BEING THE
17th DIRECTOR OF THE NATIONAL
INSTITUTES OF HEALTH AND HAVE
ANOTHER TREMENDOUS HONOR IN THAT
I'M THE VERY PROUD MOTHER OF AN
AUTISTIC SON AND HIS NAME IS BEN
AND 27 YEARS OLD AND LIVES WITH
HIS FATHER AND ME AND IS A VERY
HAPPY GUY AND VERY MISCHIEVOUS
CHARACTER AND I AM SO LUCKY TO
BE BEN'S MOM.
AS YOU ALL KNOW EVERY PERSON
WITH AUTISM IS UNIQUE AND EVERY
FAMILY'S EXPERIENCE IS UNIQUE.
OUR STORY HAS BEEN ONE OF GREAT
CHALLENGE.
BEN HAS SOME SIGNIFICANT MEDICAL
PROBLEMS BUT ALSO GREAT JOY.
WE HAVE BEEN SO FORTUNATE WITH
OUR EXPERIENCE AND AS NIH
DIRECTOR I WANT TO STRIVE TO
HAVE THAT EXPERIENCE BE TRUE.
THERE WERE EFFORTS TO IDENTIFY
PRIORITIES FOR AUTISM RESEARCH
AND SERVICES.
THE NATIONAL INSTITUTES OF
MENTAL HEALTH LEADS AND MANAGES
THIS INTERAGENCY AUTISM
COORDINATING COMMITTEE AND
SUPPORTS THE ACTIVITIES OF OUR
NATIONAL AUTISM COORDINATOR.
I WANT TO THANK JOSHUA GORDAN
AND DR. SUSAN DANIELS FOR
SERVING AS THE EXECUTIVE
SECRETARY AND HHS NATIONAL
COORDINATOR.
DIRECTOR OF THE NIH I'M ALSO
PLEASED TO BE APPOINTED AS AN
OFFICIAL MEMBER OF THIS
IMPORTANT COMMITTEE.
I MAY NOT BE ABLE TO TAKED EVERY
MEETING BUT I'LL ALWAYS HAVE
SOMEONE HERE TO REPRESENT THE
OFFICE OF THE DIRECTOR AND KEEP
ME INFORMED ABOUT THE
COMMITTEE'S WORK.
NIH IS THE LARGEST FUNDER OF
AUTISM RESEARCH IN THE UNITED
STATES.
WE ARE PROUD OF THE IMPORTANT
VANCE HAVE RESULT FROM OUR
INVESTMENTS SO FAR.
AND MAYBE IMPROVE AUTISM
SCREENING.
THE NIH STUDIES HAVE HELPED
TRANSLATE FINDINGS ABOUT EARLY
SIGNS OF AUTISM INTO PRACTICAL
SCREENING TOOLS THAT CAN BE
IMPLEMENTED WIDELY.
FOR EXAMPLE, WE ARE SUPPORTING
THE DEVELOPMENT OF TOOLS THAT
CAN SCREEN FOR AUTISM IN
TODDLERS BY TELLE APPOINTMENTS
AND EVEN TABLET-BASED SCREENING
APP.
THE PARENTS WHO HAD TO GO
THROUGH THE CHALLENGES OF
SCREENING 25 YEARS, 26 YEARS
AGO, I REALLY CAN SAY THIS IS A
TREMENDOUS ADVANCE.
NIH SUPPORTED RESEARCH FOUND
MULTI-STAGE SCREENING AND EARLY
INTERVENTION PROGRAMS APPEARS TO
INCREASE AUTISM SPECTRUM
DIAGNOSIS BY AS MUCH 60%
COMPARED TO STANDARD CARE WITH
THE MOST SIGNIFICANT IMPROVEMENT
IN DETECTION IN SPANISH-SPEAKING
FAMILY.
WE ARE HOPEFUL SUCH SCREENING
WILL INCLUDE EARLY DETECTION AND
HEALTH DISPARITIES WHICH WE ALSO
KNOW ARE OF CRITICAL IMPORTANCE
TO THIS COMMUNITY.
OUR RESEARCH HAS ALSO HELPED
WHAT WE KNOW ABOUT THE
BIOLOGICAL MECHANISMS THAT UNDER
LIE AUTISM.
WE SUPPORT RESEARCH TO EXAMINE
ACROSS GENES, CELLS, BRAIN
CIRCUITRY AND BEHAVIOR.
WE SUPPORT LONGITUDINAL STUDIES
OF BRAIN DEVELOPMENT IN CHILDREN
WITH AUTISM IN EFFORTS TO
DEVELOP RELIABLE AND OBJECTIVE
BIO MARKERS FOR FIX AND MEASURES
OF SOCIAL FUNCTION AND
COMMUNICATION.
WHAT'S REALLY IMPORTANT IS
HAVING RELIABLE MEASURES ARE
CRITICAL FOR TESTING NEW
INTERVENTIONS TO IMPROVE THE
LIVES OF AUTISTIC INDIVIDUALS.
NIH IS PROUD TO SUPPORT GROUP
TRAINING AND SERVICES FOR
AUTISTIC ADULTS AND YOUTH
TRANSITIONING TO ADULTS.
IN SHORT, THERE'S SO MUCH TO DO
ON SO MANY FRONTS.
THE COMMUNITY AND EVEN
INDIVIDUAL FAMILY AND HOMES.
AND WE'RE COMMITTED TO REPORTING
RESEARCH TO HELP THE
UNDERSTANDING OF AUTISM ACROSS
THE ENTIRE LIFE SPAN.
CONTINUE TO SEEK INPUT FROM THE
COMMUNITY AND SELF-ADVOCATES AND
WE'LL CONTINUE TO WORK WITH ALL
OTHER FEDERAL AGENCIES TO HELP
IMPROVE HEALTH AND WELL BEING
WITH INDIVIDUALS AND THEIR
FAMILIES.
NIH IS COMMITTED TO A
RELATIONSHIP THAT THOSE BE
SERVED AND DEFINED BY NOTHING
WITH US WITHOUT US.
WE DON'T EXPECT MY SON WILL BE
ABLE TO LIVE INDEPENDENTLY BUT
HOPEFUL HE WILL LIVE HIS BEST
LIFE.
THE LIFE THAT BRINGS HIM PURPOSE
AND SATISFACTION.
PEOPLE WITH AUTISM SHOULD BE
ABLE TO CHOOSE THEIR OWN LIFE
AND TO HAVE WHAT IS NEEDED TO
ACHIEVE IT.
AT NIH WE WILL DO OUR BEST TO
LISTEN TO THIS COMMUNITY AND
PARTNER WITH COMMUNITY BECAUSE
IT'S THE ONLY WAY WE'LL BE ABLE
TO DELIVER THESE EFFORTS.
THANK YOU SO MUCH.
I'M HONORED TO BE A MEMBER OF
THE COMMUNITY OF LOVE AND
SUPPORT OF AUTISTIC PEOPLE
EVERYWHERE AND A LOOK FORWARD TO
WORKING WITH YOU TO MAKE THIS
HAPPEN.
THANK YOU.
>> SUSAN DANIELS WILL GIVE US
THE UPDATES.
>> THANK YOU SO MUCH FOR BEING
HERE.
I'M GOING GIVE THE AUTISM
COORDINATOR UPDATE.
IT'S GOING TO BE THE SHORTEST WE
HAVE SINCE THE NEW COMMITTEE
STARTED BECAUSE WE HAVE A
SPECIAL PRESENTATION GROUP
TODAY.
THE RECENTLY PROGRESS ON
SUPPORTIVE SERVICES FOR
INDIVIDUALS WITH AUTISM AND IT
WAS SENT TO CONGRESS EARLIER BUT
TAKES US A WHILE TO GET THE
VERSION UP ONLINE.
NOW IT'S AVAILABLE.
THE AWARD COVERS SERVICE AND
PROVIDES INFORMATION ABOUT MANY
DIFFERENT MODALITIES OF SERVICES
THAT CAN BE PROVIDED AND ALSO
COVERAGE POLICIES WHICH WAS PART
OF THE REQUEST AND IT HIGHLIGHTS
NEEDS AND OPPORTUNITIES
>> THIS IS SUPPORT MY OFFICE AND
FEDERAL AGENCIES AND
DEPARTMENTS.
SO WE REALLY APPRECIATE
EVERYONE'S COOPERATION ON THIS
REPORT AND AVAILABLE ON THE
WEBSITE.
THIS SLIDE SHOWS THE LIST OF
SOME OF THE DIFFERENT TYPES OF
SERVICES THAT ARE AVAILABLE THAT
ARE COVERED IN THE REPORT.
YOU CAN LOOK THROUGH THAT AND WE
DID TRY TO BE AS COMPREHENSIVE
AS WE COULD.
SOME OF THE RECOMMENDATIONS WERE
WAYS TO STRENGTHEN THE SERVICE
SYSTEM WERE TO INCREASE ON
FAMILY NAVIGATION AND SERVICES
NAVIGATION AND AS A SYSTEM
SOMETIMES CAN BE ACROSS MANY
AREAS AND DIFFICULT TO GAUGE SO
NAVIGATION IS A GREAT
OPPORTUNITY.
DIAGNOSTIC SERVICES AND
SHORTENING WAIT LIST AND THE
OPPORTUNITIES BY TELEHEALTH.
WE ENCOURAGE YOU TO LOOK AT THE
REPORT.
>> I WANT TO MAKE AN EDITORIAL
COMMENT HERE, OFFICIALLY THIS
BODY IS ADVISORY TO THE
SECRETARY AND OFFICIALLY THE
NATIONAL COORDINATOR TRIES TO
TAKE WHAT THIS BODY SUGGESTS AND
GET ALL THE FEDERAL AGENCIES TO
INCORPORATE THAT INTO THEIR
POLICY FOR THE PURPOSES LATER.
THIS WORK REPRESENTED AN
OPPORTUNITY FOR THIS BODY
UNOFFICIALLY THROUGH THE
NATIONAL AUTISM COORDINATOR TO
PRESENT THOSE RECOMMENDATIONS TO
CONGRESS.
WE APPRECIATE THE WORK YOU'VE
DONE BECAUSE A LOT OF WHAT WE
TALKED ABOUT IN THE ROOM AS YOU
CAN SEE FROM THE PRESENTATION IS
THE REPORT AND RECOMMENDATIONS
TO CONGRESS.
THANKS AND THANK YOU, SUSAN FOR
PUTTING IT TOGETHER.
>> THANK YOU.
SO THAT IS THE MAIN PORTION OF
THE NATIONAL AUTISM COORDINATOR
UPDATE THIS TIME.
WE DID PREPARE THE FULL LISTING
OF ALL THE DIFFERENT ACTIVITIES
ACROSS FEDERAL AGENCIES AND THE
DOCUMENT ON THE WEB AND I
NEGLECTED TO TELL EVERYONE
TUNING IN ONLINE ALL THE
MATERIALS ARE ON THE WEB.
THEY CAN BE ACCESSED THERE.
LOOK LIEU THE UPDATE AND KNOW
I'M GOING TO TURN TO THE
PRESENTATION WE HAVE FROM
MEMBERS OF THE FEDERAL AGENCY
WORK GROUP ON AUTISM THE GROUP I
SHARE AS THE NATIONAL AUTISM
COORDINATOR.
THIS GROUP HAS A NUMBER OF
DIFFERENT THINGS.
A GROUP THAT MEETS IN A
NON-PUBLIC FASHION BECAUSE WE'RE
ABLE TO WORK ON INITIATIVES THAT
ARE BEING PLANNED AND DISCUSSED
IN PUBLIC AND ABLE TO TAKE INTO
CONSIDERATION THE
RECOMMENDATIONS OF THE IACC AND
HOW TO THEY'LL BE IMPLEMENTED
ACROSS THE FEDERAL AGENCIES.
SO THIS ALL FEDERAL WORKING
GROUP WAS INITIALLY STARTED
SEVERAL YEARS AGO IN 2018 AND
NOW WE MEET THREE TIMES A YEAR
AS WE HAVE SPECIAL NEEDS TO TALK
ABOUT INITIATIVES AND THIS IS
WHAT I USE TO CARRY OUT WHAT
THIS IACC HAS RECOMMENDED.
THE INFORMATION WAS EXCHANGED
AND HELPS NOT DUPLICATE EFFORT
AND RESPONSIBILITIES.
THE INFORMATION COMES BACK TO
YOU IN REPORTS FROM HHS AND OUR
OFFICE AND TRY TO DISSEMINATE
THE INFORMATION AND IT'S V
VOLUNTARY AND HAVE EXCELLENT
MEMBERSHIP.
THIS IS A LISTING OF ALL THE
DIFFERENT AGENCIES AND MANY
PEOPLE ARE ALSO HAVE ADDITIONAL
AGENCIES AND DEPARTMENTS NOT ON
THE IACC WITH THAT I'LL HAVE
THIS PRESENTATION TODAY WHICH IS
GOING TO BE AN OPPORTUNITY FOR
FEDERAL AGENCY OFFICIAL TO SHARE
SOME OF THEIR STRATEGY FOR THE
STRATEGIC PLAN AND AUTISM
THROUGH THEIR DISABILITY AND
AUTISM PROGRAMS.
WE'RE GOING HAVE SOME SPEAK
TODAY AND SOME IN APRIL.
WE'RE GOING TO HEAR FROM CHRISTY
KAVU
KAVULIC, MATTHEW MAENNER AND
LISA GILOTTY, SCOTT ROBERTSON
FROM THE DEPARTMENT OF LABOR,
JEP FER JOHNSON FROM THE
ADMINISTRATION FOR COMMUNITY
LIVING, LEAH LOZIER, ALLISON
MARVIN FROM THE SOCIAL SECURITY
ADMINISTRATION AND ROBERT
OCHSENDORF NOT A MEMBER OF FI WA
BUT COLLABORATES WITH US.
I'LL TURN IT OVER TO OUR FIRST
SPEAKER.
EACH FEEL FREE TO INTRODUCE
YOURSELVES AS A START.
>> THANK YOU.
MY NAME IS CHRISTIE KAVULIC IN
THE SPECIAL EDUCATION PROGRAMS
PART OF THE OFFICE OF SPECIAL
EDUCATION AND WITHIN THE
DEPARTMENT, OFFICE OF THE
REHABILITATIVE SERVICES AND THE
INSTITUTE FOR EDUCATION SCIENCES
IS WHERE A LARGE PART OF OUR
WORK AROUND PEOPLE WITH
DISABILITIES AND PEOPLE WITH
AUTISM IS SITUATED.
WITHIN THAT WE HAVE THE OFFICE
OF SPECIAL EDUCATION PROGRAMS
AND THEN THE REHABILITATIVE
SERVICES ADMINISTRATION.
RSA ADMINISTERS TITLE IV OF THE
WORKFORCE INNOVATION AND
OPPORTUNITY ACT AND WHERE I'M
FROM IS THE IDEA WHICH IS THE
ACT THAT PROVIDES SERVICES TO
INST
INF
INFANTS, TODDLERS AND I'LL FOCUS
ON SOME OF THE WORK OF THE
OFFICE OF SPECIAL EDUCATION
PROGRAM AS WELL AS THE WORK OF
THE INSTITUTE OF EDUCATION
SCIENCES UNDER THE UMBRELLA OF
THE IDEA.
SO THE IDEA SERVES ABOUT 900,000
CHILDREN WITH AUTISM IN ADDITION
TO INFANTS, TODDLERS AND
CHILDREN WITH AUTISM IN THEIR
FAMILIES.
THE TOPICS WE FOCUS ON THROUGH
NATIONAL ACTIVITIES FUNDING ARE
RESEARCH, TECHNICAL ASSISTANCE
AND DISSEMINATION, PERSONNEL
PREPARATION, TECHNOLOGY, MEDIA
AND PARENT PROGRAMS.
THESE NATIONAL ACTIVITIES ARE
FUNDED UNDER PART D OF THE IDEA.
I WANTED TO FOCUS SPECIFICALLY
ON A FEW AREAS THAT WE ARE
FOCUSSED ON IN OCEP THIS FISCAL
YEAR WITHIN THE PERSONNEL
PREPARATION LINE ITEM AND WITHIN
OUR TECHNOLOGY AND MEDIA LINE
ITEM.
ACROSS THE EARLY INTERVENTION
AND SPECIAL EDUCATION SYSTEMS WE
HAVE A SHORTAGE OF WORKFORCE WHO
ARE PREPARED TO SUPPORT CHILDREN
WITH DISABILITIES AND THEIR
FAMILIES INCLUDING CHILDREN WITH
AUTISM AND SO OUR INVESTMENTS
ARE TRYING TO ADDRESS THE
SHORTAGE OF THE WORKFORCE.
WE OFFER ON THE SCREEN THIS
COMING FISCAL YEAR THESE VARIOUS
PROGRAMS AND A LARGE PART OF
THEM ARE PREPARATION PROGRAMS SO
UNIVERSITIES APPLY FOR FUNDING
AND THAT FUNDING THEN GOES TO
SUPPORT SCHOLARS IN COMPLETING
THEIR BACHELORS, MASTER'S
CERTIFICATE, CLINICAL DOCTORATE
TO WORK WITHIN THE EARLY
INTERVENTION SPECIAL EDUCATION
OR RELATED SERVICES FIELDS.
IF SOMEONE RECEIVES THEIR DEGREE
THROUGH THE GRANT THEY OWE
SERVICE TO THE FIELD.
THAT'S WAY A WAY TO SUPPORT
PEOPLE ENTERING THE FIELD AND
WORKING IN THE FIELD.
SOME INVESTMENTS ARE
SPECIFICALLY GEARED TOWARDS
MINORITY SERVING INSTITUTIONS
INCLUDING HBCUs AND HISTORICALLY
BLACK COLLEGES AND UNIVERSITIES
AND TRIBAL COLLEGES AS WELL.
THE OTHER AREA SO HOW WE HAVE
THOSE PROGRAMS SET UP IS THAT
APPLICANTS INDICATE WHO THEY
WILL BE PREPARING WITHIN THEIR
APPLICATIONS AND SOME OF THESE
APPLICANTS SPECIFICALLY IDENTIFY
THEY'LL BE PREPARING PERSONNEL
TO WORK IN THE FIELD TO HAVE A
SPECIALIZATION OF WORKING WITH
CHILDREN WITH AUTISM.
NOT ALL THE GRANTS DO BUT ACROSS
ALL THESE AREAS THERE ARE GRANTS
THAT SPECIFICALLY FOCUS ON
SUPPORTING CHILDREN WITH AUTISM.
OUR EDUCATIONAL TECHNOLOGY
PROGRAM, THIS IS AN AREA THAT
WE'RE FOCUSSED ON SUPPORTING
EDUCATIONAL TECHNOLOGIES TO BE
IMPLEMENTED WITHIN EARLY
INTERVENTION AND SCHOOL SYSTEMS
AND SO THE STEPPING UP
TECHNOLOGY IMPLEMENTATION TAKES
A TECHNOLOGY AND SUPPORTS THE
IMPLEMENTATION OF IT IN A
REAL-WORLD EDUCATIONAL SETTING
AND THEN WE ARE GOING TO BE
FUNDING THIS YEAR THE NATIONAL
CENTER ON DIGITAL ACCESS AND
EDUCATION TO SUPPORT MORE
ACCESSIBLE EDUCATION MATERIALS
FOR CHILDREN.
I WANTED TO HIGHLIGHT WHERE THE
INSTITUTE FOR EDUCATION OF
SCIENCES, THE NATIONAL CENTER
FOR SPECIAL EDUCATION RESEARCH,
THEY'LL BE COMPETING FOR THE
UPCOMING YEAR.
IT FUNDS SPECIAL EDUCATION
RESEARCH ACROSS FOUR TYPES OF
RESEARCH PROJECTS, EXPLORATION,
DEVELOPMENT AND INNOVATION,
IMPACT AND MEASUREMENT.
THE WAY THIS IS STRUCTURED IS
THAT IT'S FIELD INITIATED.
SO THOSE WHO COME IN AND PROPOSE
A PROJECT AND SOME OF THE
PROJECTS CAN BE -- ARE PROPOSED
ARE SPECIFIC TO SUPPORTING
CHILDREN WITH AUTISM IN ONE OF
THESE AREAS.
THE OTHER PROGRAM FUNDED ON AN
ANNUAL BASIS ARE TRAINING
PROGRAMS AND SPECIAL EDUCATION
TO PREPARE INDIVIDUALS TO
CONDUCT RIGOROUS AND RELEVANT
SPECIAL EDUCATION AND EARLY
INTERVENTION RESEARCH.
THESE GENERALLY GO TO NEW
FACULTY THAT ARE ENTERING THE
FIELD SO EARLY CAREER FACULTY.
THOSE IN POST-DOCTORAL SO THEY
CAN START DEVELOPING THEIR AREA
OF RESEARCH AND SPECIALIZATION
AND AGAIN IT'S FIELD INITIATED
SO APPLICANTS MAY PROPOSE
RESEARCH THAT TARGETS RESEARCH
AROUND AUTISM AND A NEW GRANT
FUNDING FOR THIS UPCOMING YEAR
AGAIN WITH THE FOCUS ON THE
WORKFORCE BECAUSE WE KNOW THERE
ARE SHORTAGES IS THE CENTER ON
THE K-IS IT SPECIAL EDUCATION
WORKFORCE GRANT AND IT'S TO FUND
A RESEARCH AND DEVELOPMENT
CENTER TO TRY TO LEARN
ADDITIONAL RESEARCH ON THE
SPECIAL EDUCATION WORKFORCE AND
HOW TO SUPPORT THEM.
THEN THE LAST SLIDE I WANTED TO
HIGHLIGHT WAS A DOCUMENT THE
DEPARTMENT OF EDUCATION RELEASED
IN COLLABORATION WITH THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES THAT MAY BE OF INTEREST
TO THE COMMITTEE.
IT'S A POLICY STATEMENT ON THE
INCLUSION OF CHILDREN WITH
DISABILITIES IN EARLY CHILDHOOD
PROGRAMS AND THE STATEMENT IS A
REVISION OF A STATEMENT RELEASED
IN 2015.
THE VISION OF THE STATEMENT IS
THAT WE SET THE EXPECTATION THAT
ALL YOUNG CHILDREN WITH
DISABILITIES SHOULD HAVE ACCESS
TO HIGH QUALITY, INCLUSIVE EARLY
CHILDHOOD PROGRAMS THAT PROVIDE
INDIVIDUALIZED AND APPROPRIATE
SUPPORT TO THEY CAN FULLY
PARTICIPATE ALONG SIDE THEIR
PEERS WITHOUT DISABILITIES, MEET
HIGH EXPECTATIONS AND ACHIEVE
THEIR FULL POTENTIAL.
SO THIS POLICY STATEMENT OFFERED
RECOMMENDATIONS TO STATES AND
LOCAL PROGRAMS HOW TO LOOK AT
THEIR SYSTEMS ACROSS DIFFERENT
AREAS TO INCREASE INCLUSIVE
EARLY CHILDHOOD PROGRAMS FOR
CHILDREN WITH DISABILITIES.
THANK YOU.
SUSAN: THANK YOU.
MATT MAENNER.
MATT: I'M WITH THE CDC.
IT'S PUBLIC HEALTH AGENCY WITH A
BROAD PUBLIC HEALTH MISSION AND
MORE SPECIFIC TO AUTISM, CDC'S
AUTISM PROGRAMS AND ACTIVITIES
WERE FIRST DESCRIBED IN THE
CHILDREN'S HEALTH ACT OF 2000
AND RECENTLY IN THE AUTISM CARES
ACT.
CDC AUTISM PROGRAMS INCLUDE
SURVEILLANCE INCLUDING TRACKING
AUTISM THROUGH THE AUTISM AND
DEVELOPMENT DISABILITIES
MONITORING NETWORK, CONDUCTING
RESEARCH THROUGH THE STUDY TO
EXPLORE EARLY DEVELOPMENT OR
SEED AND LEARN THE SIGNS ACT
EARLY PROGRAM.
WHILE SOME OF THESE PROGRAMS
HAVE EXISTED FOR MORE THAN A
DECADE, CDC HAS INCREASED ITS
FOCUS ON AUTISM ACROSS THE LIFE
SPAN AND ADJUSTING DISPARITIES
THROUGH PUBLIC HEALTH RESEARCH
AND I DIDN'T HAVE TIME TO FOCUS
ON THE SEED RESEARCH STUDY THIS
MORNING BUT WANTED TO MENTION IN
THE PAST YEAR SEED LAUNCH A
LONGITUDINAL PHASE FOLLOWING UP
ON FORMER SEED PARTICIPANTS NOW
ADOLESCENTS OR YOUNG ADULTS.
TO HIGHLIGHT THE RECENT
ACTIVITIES FROM OUR SURVEILLANCE
PROGRAM THE AUTISM AND
DEVELOPMENT NETWORK TRACKS
PREVALENCE OF AUTISM AMONG
CHILDREN AGE 8 AND PROGRESS IN
EARLY IDENTIFICATION AMONG
CHILDREN AGE 4 AND SEEKS TO
BETTER UNDERSTAND THE NEEDS OF
ADOLESCENTS ON THE SPECTRUM AS
THEY PREPARE TO TRANSITION TO
ADULTHOOD AND POST HIGH SCHOOL
EXIT.
SO LAST APRIL, CDC PRESENTED TO
THE IACC ON THE LATEST DATA
INCLUDING UPDATED PREVALENCE
ESTIMATES AND SHOWED DISRUPTIONS
TO EARLY IDENTIFICATION THAT
COINCIDED WITH THE ONSET OF THE
COVID-19 PANDEMIC.
AT THE BEGINNING OF THIS LAST
YEAR CDC ALSO RECEIVED A BUDGET
INCREASE TO EXPAND ADDM AND THE
TEAM WORKED TO ESTABLISH FIVE
NEW SITES TO INCREASE THE NUMBER
OF SITES COLLECTING DATA ON
ADOLESCENCE AND CDC WAS DIRECTED
TO USE THE ADDM INFRASTRUCTURE
TO RE-ESTABLISH CEREBRAL PALSY
SURVEILLANCE AND IN 2020 THE
FIRST PUBLICATIONS FROM THE ADDM
PAPERS CAME OUT AND FOCUSSED ON
THE HEALTH AND CO-OCCURRING
CONDITIONS OF CHILDREN AGE 16
AND THEN A SECOND PUBLICATION
LOOKED AT SERVICES AND SUPPORTS
INDICATED IN IAPs AND TRANSITION
PLANNING GOALS.
THE LEARN THE SIGNS ACT EARLY
HAS MONITORING OF ALL CHILDREN
AND EARLY IDENTIFICATION OF
DEVELOPMENT DELAYS TO CHILDREN
AND THEIR FAMILIES CAN RECEIVE
SERVICES AND SUPPORTS THEY NEED.
THEY DO THIS THROUGH A VARIETY
OF DIFFERENT ACTIVITIES
INCLUDING PRODUCING AND
PROVIDING FREE TOOLS AND
RESOURCES SUCH AS THE MILESTONE
TRACKER APP FOR FAMILIES AND
PROFESSIONALS WHO SERVE THEM.
WE LEARNED EARLIER THIS WEEK THE
MILESTONE TRACKER APP IS
PROBABLY GOING TO CROSS THE 2
MILLION DOWNLOAD THRESHOLD ANY
DAY AND THINK BY MONDAY WE CAN
SAY 2 MILLION.
THEY SUPPORTED SEVEN COHORTS OF
ACT EARLY AMBASSADORS.
THEY'RE STATE OR TERRITORIAL
LEADERS WORKING TO INCREASE
COLLABORATION AND COORDINATION
AMONG EARLY CHILDHOOD PROGRAMS
AND LEARN THE SIGNS ACT EARLY
INTO EARLY CHILDHOOD PROGRAMS.
AS OF LAST OCTOBER, THE PROGRAM
HAS GROWN TO 60 AMBASSADORS IN
49 STATES, WASHINGTON, D.C.,
FOUR TERRITORIES AND THREE
COMMUNITIES AND BOTH
INDIVIDUALLY AND AS A GROUP THEY
ARE JUST AMAZING PEOPLE.
THEY DEVELOPED SIGNS TO
INTEGRATE THE DEVELOPMENT
MONITORING INTO PROGRAMS AND
SYSTEMS THAT SERVE YOUNG
CHILDREN AND THEIR FAMILIES
PARTICULARLY FOCUSSING ON
REACHING LOW RESOURCE FAMILIES
THROUGH PARTNERSHIPS WITH THE
USDA WIC PROGRAM AND
COLLABORATIVE LEARNING
OPPORTUNITIES AND COLLABORATIVE
ASSISTANCE PROVIDED THROUGH WIC
STAFF IN 23 STATES AND TWO
TERRITORIES.
AND THEY ALSO ARE COLLABORATING
WITH THE AAP ABOUT SCREENING,
REFERRAL AND FOLLOW-UP AND WE'RE
NOW WORKING CLOSELY WITH HRSA TO
EMBED THESE WITH THEIR GRANTEES
TO FOCUS ON EARLY CHILDHOOD
DEVELOPMENT.
I THINK THAT'S IT FOR ME.
THANK YOU.
SUSAN: NEXT WE'RE HEAR FROM LISA
GILOTTY FROM THE NIH.
LISA: GOOD MORNING.
I'M A PROGRAM OFFICER WITH NIMH
AND I'LL BE HIGHLIGHTING A
COUPLE NIH INITIATIVES THAT MAY
BE OF INTEREST TO THE COMMITTEE
OR MAY NOT BE AWARE OF.
IT SUPPORTS RESEARCH INCLUDING
INNOVATIVE AND COST-IVE SERVICES
AND INTERVENTIONS.
THE AWARDS SUPPORT RESEARCH AT
INDIVIDUAL CENTERS FEATURING
COLLABORATIONS BETWEEN A TEAM OF
EXPERTS AND ADD RESEARCH
NETWORKS WHICH INVOLVE MULTIPLE
INSTITUTIONS.
EACH HAS ACE HAS ADOPTED A PLAN
FOR DIVERSE PERSPECTIVES THAT
OUTLINES STRATEGIES TO INCREASE
THE NUMBER OF INDIVIDUALS FROM
TRADITIONALLY UNDER REPRESENTED
BACKGROUNDS IN THE AUTISM BIO
MEDICAL AND BEHAVIORAL AND
CLINICAL WORKFORCE AS WELL AS TO
INCREASE THE PARTICIPATION OF
UNDER REPRESENTED POPULATIONS IN
AUTISM RESEARCH.
THE CENTERS ARE SUPPORTED BY A
NUMBER OF NIH INSTITUTES
INCLUDING NICHD AND NIDCD AND
NIH AND NINDS.
AT THE BOTTOM OF THE SLIDE YOU
CAN SEE INFORMATION ABOUT THE
FUNDING AND SCOPE OF THE AWARDS,
THE CURRENT GROUP OF AWARDS WILL
BE ACTIVE UNTIL 2027 AND THERE'S
A LINK TO GET MORE SPECIFIC
INFORMATION ABOUT EACH OF THE
CENTERS.
>> THEY'RE LOCATED IN CHILDREN'S
HOSPITAL TO PROVIDE RESEARCH IN
DEVELOPMENTAL DISABILITIES
INCLUDING AUTISM USING
INTEGRATED APPROACHED TO ADVANCE
THE DEVELOPMENT OF SERVICES AND
INTERVENTIONS FOR IDDs.
THE RESEARCH PROJECTS INCLUDE
APPROACHES TO ED UNDERSTANDING
OF RISK AND RESILIENCE, USE OF
NOVEL TECHNOLOGIES TO ASSESS
IMPROVEMENT IN TREATMENT AND
DEVELOPMENT OF INTERVENTIONS FOR
MANAGEMENT OF CO-OCCURRING
MENTAL HEALTH CONDITIONS.
THE CURRENT GROUP WILL BE ACTIVE
UNTIL 2025 AND AT THE BOTTOM
THERE'S A LINK ABOUT INFORMATION
ABOUT THE ANNOUNCEMENT.
AND FINALLY THE RARE DISEASE
CLINICAL RESEARCH NETWORKS.
THE RDCRN PROGRAM -- AND I
SHOULD SAY UP FRONT THE PROGRAM
IS LED BY THE NATIONAL CENTER
FOR TRANSLATING SCIENCES.
THE PROGRAM IS TO ADVANCE
MEDICAL RESEARCH ON RARE
DISEASES BY PROVIDING SUPPORT
FOR CLINICAL STUDIES AND
FACILITATING COLLABORATION,
STUDY ENROLLMENT AND DATA
SHARING.
THROUGH A NETWORK OF CONSORTIA
SCIENTISTS FROM MULTIPLE D
DISPLD
DISPLINSES -- DISCIPLINES TO
STUDY MORE THAN 180 RARE
DISEASES.
THE CURRENT GROUP INCLUDE 20
ACTIVE CONSORTIA WORKING ON
MULTI-SITE LONGITUDINAL STUDIES
AND PROJECT TO ADVANCE TREATMENT
FOR RARE DISEASES INCLUDING A
SYNDROME ASSOCIATED WITH AUTISM,
McDERMOTT SYNDROME.
YOU CAN SEE A LITTLE BIT OF
INFORMATION.
THESE ARE SUPPORTED ACROSS
MULTIPLE INSTITUTES INCLUDING N
OF NCATS AND NIMH AND NINDS AND
THERE'S A LINK TO GET ADDITIONAL
INFORMATION ABOUT THE CENTER --
PHELAN-McDERMID SYNDROME.
SUSAN: NEXT WE'LL HEAR FROM
SCOTT ROBERTSON.
>> THANK YOU, DR. DANIELS.
I'M DR. SCOTT MICHAEL ROBERTSON
AN AUTISTIC WHITE MAN WITH BLUE
EYES AND WEARING GLASSES AND A
RED SHIRT AND DARK JACKET I
THINK NAVY AND OFFICE OF
DISABILITY EMPLOYMENT POLICY
BACKGROUND BEHIND ME AT THE
DEPARTMENT OF LABOR.
WE'RE AN AGENCY THAT FOCUSES ON
INCREASING ACCESS TO EMPLOYMENT
AND CAREER PATHWAYS FOR DIVERSE
PEOPLE WITH DISABILITIES.
OUR MISSION SPECIFICALLY FOCUSES
ON ACTIVITIES TO DEVELOP AND
INFLUENCE POLICIES AND PRACTICES
THAT CAN INCREASE THE NUMBER AND
QUALITY OF EMPLOYMENT
OPPORTUNITIES FOR PEOPLE WITH
DISABILITIES.
AGAIN FROM DIVERSE BACKGROUNDS,
DIVERSE DISABILITY EXPERIENCES,
ALL TYPES OF DISABILITIES.
WE PLACE EMPHASIS EN OUR WORK
AND FOCUS ON OTHER AREAS OF
DISABILITY SUCH AS SUPPORT FOR
EMPOWERMENT OF NEURODIVERGENT
PEOPLE AND FOSTERING
NEURODIVERSITY AT WORK AND
FOSTER AND ALIGNING UNDER
PRIORITIES UNDER THE AUTISM
CARES ACT AND SUPPORTING OTHER
AGENCIES IN REGARD TO IMPROVING
ACCESS TO EMPLOYMENT IN
GOVERNMENT AND IN INDUSTRY.
SO OUR PORTFOLIO EMPHASIS IS ON
EMPLOYMENT AND CAREERS
SPECIFICALLY COMPETITIVE
INTEGRATED EMPLOYMENT ACCESS FOR
PEOPLE WITH DISABILITIES.
CAREER PATHWAYS AND CURRENTLY
THE FEDERAL GOOD JOBS INITIATIVE
ACROSS THE FEDERAL GOVERNMENT
THE DEPARTMENT OF LABOR IS
TAKING A LEAD ON.
AND DRIVING GREATER SUPPORT FOR
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY OR DEIA PRIORITIES
UNDER FEDERAL EXECUTIVE ORDER
AND ONLY KEY EXECUTIVE POLICIES
AND PRACTICES.
AT THE BOTTOM OF THE SLIDE I
HAVE THE OFFICE OF DISABILITY
EMPLOYMENT POLICY LOGO AND NEXT
TO THAT IS THE RECENTLY
CELEBRATED 50th ANNIVERSARY FOR
THE REHABILITATION ACT OF 1973
WE CELEBRATED AND HAVE THE LOGO
FOR THAT.
I WANTED TO FOCUS ON OUR WORK.
WE DO A LOT OF OTHER WORK AS
WELL YOU COULD FIND THAT ON OUR
WEBSITE, BUT I WANTED TO
CONCENTRATE ON THE AWESOME WORK
JUST TODAY.
OUR MAIN WORK IS OUR RESEARCH
PROJECT THAT IS CALLED THE
RESEARCH SUPPORT RESOURCE FOR
EMPLOYMENT OF YOUNG ADULTS ON
THE AUTISM SPECTRUM.
WE OFTEN ABBREVIATE AND WE FOCUS
ON YOUNG ADULTS BECAUSE THAT'S
THE CHARGE FROM CONGRESS THAT
ASKED TO US DO THE PROJECT.
IT'S THE LARGEST INVESTMENT FROM
OUR AGENCY'S HISTORY IN MORE
THAN 20 YEARS AS AN AGENCY.
SPECIFICALLY IT WILL BE 23 YEARS
AS AN AGENCY.
THE GOAL IS TO INCREASE ACCESS
AND EXPAND ACCESS TO INCLUSIVE
EMPLOYMENT AND CAREER PATHS FOR
AUTISTIC YOUTH AND YOUNG ADULTS
AND HAVE INDICATIONS FOR WHAT
WORKS WELL FOR YOUTH YOUNG
ADULTS AND WORKS WELL FOR ALL
AUTISTIC PEOPLE AT ALL SPORTS OF
THE AGE RANGE.
THE FUNDING IS UNDER CONTRACT
WITH MATHEMATICA.
IT'S A $2.9 MILLION PROJECT TO
BE PRECISE LAUNCHED IN FISCAL
2021 AND IT'S BEEN ENGAGED IN
DATA ANALYSIS RUNNING LISTENING
SESSION WITH AUTISTIC YOUTH AND
YOUNG ADULTS AND WE HAD ABOUT 96
AUTISTIC YOUTH AND YOUNG ADULTS
AND LITERACY REVIEW AND OTHER
FORM OF DATA ANALYSIS.
WE'VE RELEASED MANY PROJECT
REPORTS FROM THIS PROJECT AND I
WANT TO THE HIGHLIGHT A FEW ON
PROGRAMS AND STRATEGIES AND
EVIDENCE ON THE EFFECTIVENESS OF
PROGRAM MODELS AND STRATEGIES.
BARRIERS TO FACILITATORS TO
EMPLOYMENT AND CAREERS.
THIS IS A REPORT THAT CAME FROM
OUR LISTENING SESSION AND THE
MOST RECENT REPORT ON VOCATIONAL
REHABILITATION SERVICES AND
OUTCOMES.
IT'S AN ANALYSIS DONE ON THE
V.R. SYSTEM AND THE YEARS
LEADING UP TO RIGHT BEFORE THE
COVID-19 PANDEMIC.
IT'S IN THE PLANNING ELEMENT
STAGE AND I'LL BE ABLE TO SHARE
MORE SPECIFICS DOWN THE LINE BUT
THIS IS GOING TO BE AN ACTIVITY
LOOKING AT SURVEYING YOUNG
ADULTS ABOUT EXPERIENCES AND
PERSPECTIVES FROM EMPLOYMENT AND
CAREERS AND BARRIERS IN
EXPERIENCE.
THE POINT OF CONTRACT IS DAVID
ROSENBLUM OUR FEDERAL PROJECTS
MANAGER FOR THIS PROJECT AND I'M
A SUBJECT MATTER EXPERT FOR
NEURODIVERSITY AT WORK HELPING
ASSIST ACTIVITIES SINCE IT
LAUNCHED IN FY2021.
THERE ARE LINKS TO ALL THE
REPORTS YOU CAN SEE LATER ON.
I'D LIKE TO SHARE NEURODIVERSITY
WORK WE HAVE.
AT DOL/DEPP WE HAVE EARN FOR
SHORT THE EMPLOYER ASSISTANCE
AND RESOURCE NETWORK DISABILITY
INCLUSION AND THIS HAS RELEASED
A NEURODIVERSITY IN THE
WORKPLACE GUIDE AS WELL AS A
TOOL KIT FOR SUPPORTING
WORKPLACE MENTAL HEALTH AND HAD
HOSTED A WEBINAR PREVIOUSLY ON
HIRING AND SUPPORTING
NEURODIVERGENT WORKERS AND
STRATEGIES FOR SUCCESS AND IT'S
ARCHIVED ONLINE AND YOU'LL SEE
IN THE ROUND ROBIN NOTES WE HAVE
A COUPLE SESSIONS THAT WERE
RECORDED AND POSTED ONLINE
RECENTLY I CAN MENTION IN THE
ROUND ROBIN SESSION RELATED TO
NEURODIVERSITY AT WORK AND
MENTAL HEALTH AND OUR JOB
ACCOMMODATIONS AT WORK WHICH IS
ANOTHER TECHNICAL ASSISTANCE
CENTER FUNDED HAS A WEB PAGE AND
HAS PREVIOUSLY HOSTED A WEBINAR
ON ACCOMMODATION SOLUTION FOR
NEURODIVERGENT WORKERS.
AS NOTED IN THE RED ROBIN WE
HAVE ANOTHER WEBINAR COMING UP
IN THE SPACE.
IT HAS SPECIFIC WEB PAGES FOR
ACCOMMODATIONS IN THE WORKPLACE
FOR INTELLECTUAL DISABILITY,
MANY OTHER DISABILITIES IN THE A
TO Z LIBRARY FOR WORKFORCE
ACCOMMODATIONS AND STAFF ARE
LABEL TO PROVIDE FREE EXPERT AND
CONFIDENTIAL ASSISTANCE ON WORK
ACCOMMODATIONS AND SUPPORTS.
THEY HAVE TEAMS FOR SPECIFIC
TYPES OF DISABILITIES INCLUDING
FOR INSTANCE A COGNITIVE AND
NEUROLOGICAL TEAM AND THIS IS
ALL FREE EXPERT CONFIDENTIAL
ASSISTANCE, YOUR TAXPAYER
DOLLARS AT WORK AND ANYONE CAN
CONNECT WITH JAN INCLUDING JOB
SEEKERS, WORKERS WITH EMPLOYERS,
FAMILY MEMBERS, ANYONE
INTERESTED IN LEARNING DIFFERENT
IDEAS FOR ADDRESSING BARRIERS
THROUGH WORK ACCOMMODATIONS AND
SUPPORTS IN SERVICES ESPECIALLY
THOSE INLINE WITH THE AMERICANS
WITH DISABILITIES ACT AND THE
REHABILITATION ACT OF 1973.
THAT'S IT FOR US.
THANK YOU.
>> THANK YOU.
SUSAN: NEXT IS JENNIFER JOHNSON.
ARE YOU ABLE TO ACCESS?
WE'LL COME BACK TO JENNIFER AND
I'LL SKIP AHEAD TO LEAH LOZIER.
LEAH: I'M IN OFFICE OF POLICY
DEVELOPMENT AND RESEARCH FOR
SUCH DEPARTMENT OF HOUSING AND
URBAN DEVELOPMENT AND I'M A FIWA
MEMBER.
HUD'S MISSION IS TO CREATE
STRONG, SUSTAINABLE COMMUNITIES
AND AFFORDABLE HOLDS FOR ALL AND
PROTECT CONSUMERS, MEET THE NEED
FOR QUALITY AFFORDABLE RENTAL
HOME AND BUILD INCLUSIVE
COMMUNITIES FREE FROM
DISCRIMINATION AND TRANSFORM THE
WAY HUD DOES BUSINESS.
HUD DOES NOT HAVE AUTISM
SPECIFIC PROGRAMS BUT DOES SERVE
PERSONS WITH DISABILITIES
THROUGH ALL OF ITS HOUSING
PROGRAMS INCLUDING PROGRAMS
SPECIFICALLY FOR THOSE WITH
DISABILITIES.
AMONG THE 4.6 MILLION HOUSEHOLDS
HUD SERVED THROUGH THE RENTAL
ASSISTANCE PROGRAMS, 34% WERE
HELD BY NON-ELDERLY PERSON WITH
DISABILITY INCLUDING 30% IN OUR
PUBLIC HOUSING HOUSEHOLDS AND
35% OF VOUCHER HOUSEHOLDS.
WE'RE SERVING FOLKS IN ALL OF
OUR PROGRAMS.
THE FOCUS OF TODAY'S BRIEF
PRESENTATION I WANT TO HIGHLIGHT
FOUR PROGRAMS SPECIFICALLY FOR
PERSONS WITH DISABILITIES.
THE FIRST IS THE SECTION 811
SUPPORTIVE HOUSING PROGRAM AS
THE TRADITIONAL PROGRAM.
THIS PROGRAM PROVIDES
INTEREST-FREE CAPITAL
INVESTMENTS FUNDING TO BUILT AND
NON-PROFIT DEVELOPERS SUBSIDIES
AND AVAILABLE FOR LOW-INCOME
HOUSEHOLDS WITH AN INCOME OF
LESS THAN 50% OF THE MEDIAN
INCOME.
THERE'S A SECTION 811PRA,
PROJECT RENTAL ASSISTANCE
PROGRAM.
THE KEY DIFFERENCE IS INTEGRATED
UNITS.
UNDER THIS PROGRAM STATE HOUSING
AGENCIES THAT HAVE ENTERED INTO
A PARTNERSHIP WITH STATE
MEDICAID AND HEALTH AND HUMAN
SERVICES AGENCIES CAN APPLY FOR
GRANTS AT SUBSIDIZED RENT FOR
PEOPLE WITH DISABILITIES IN
AFFORDABLE HOUSING DEVELOPMENTS.
THE PROGRAM SUBSIDIZES UP TO 25%
OF UNITS IN A PROPERTY TO ENSURE
PEOPLE WITH DISABILITIES ARE
FULLY INTEGRATED INTO THE
COMMUNITY.
PARTICIPANTS MAH MUST HAVE
EXTREMELY LOW INCOME IN THIS
PROGRAM WHICH IS AT OR BELOW OF
THE 30% MEDIAN INCOME AND MUST
BE ELIGIBLE FOR MEDICAID OR
OTHER HEALTH AND HUMAN SERVICES.
SO TWO OTHER SMALLER AND LESSER
KNOWN PROGRAMS ARE MAINSTREAM
VOUCHERS AND NED VOUCHERS, NED
STANDS FOR NON-ELDERLY DISABLED.
VOUCHERS ARE A RENTAL ASSISTANCE
THAT ENABLES A HOUSEHOLD TO RENT
IN THE PRIVATE MARKET AND PAY
30% OF THEIR INCOMING RENT.
FOR MAINSTREAM VOUCHERS THIS IS
RENTAL ASSISTANCE FOR
NON-ELDERLY PEOPLE WITH
DISABILITIES AND IN THIS PROGRAM
ONE ADULT MEMBER OF THE
HOUSEHOLD MUST HAVE A
DISABILITY.
AS NOR NED VOUCHERS THIS IS ALSO
RENTAL ASSISTANCE FOR
NON-ELDERLY PEOPLE WITH
DISABILITY BUT THE KEY
DIFFERENCE IS THE HEAD OF
HOUSEHOLD MUST HAVE A
DISABILITY.
THIS COMES IN ESSENTIALLY TWO
CATEGORIES.
THE FIRST IS FOR NON-ELDERLY
PEOPLE WITH DISABILITIES TO
ACCESS AFFORDABLE HOUSING IN A
RENTAL MARKET SIMILAR TO OUR
VOUCHER PROGRAM AND THE SECOND
ONE THE KEY DIFFERENCE IS THIS
IS FOR PEOPLE WITH DISABILITIES
TRANSITIONING FROM NURSING HOMES
AND OTHER HEALTH CARE
INSTITUTIONS BACK INTO THE
COMMUNITY.
THAT'S IT FOR ME.
THANK YOU.
>> THANK YOU, DR. LOZIER.
NEXT IS ALISON MARVIN, SOCIAL
SECURITY ADMINISTRATION.
>> GOOD MORNING.
I'M ALLISON MARVIN, SOCIAL
SECURITY ADMINISTRATION AND
STATISTICIAN IN THE CENTER OF
EXCELLENCE AT THE SOCIAL
SECURITY ADMINISTRATION AND I'M
BOTH AT FIWA AND IACC MEMBER AND
WE DO NOT HAVE AUTISM SPECIFIC
PROGRAMS BUT OUR PROGRAMS DO
SERVE THOSE ON THE AUTISM
SPECTRUM.
WE HAVE TWO DISABILITY PROGRAMS.
ONE IS SSDI WHICH PAYS BENEFITS
TO ENSURED DISABLED INDIVIDUALS
AND CERTAIN FAMILY MEMBERS.
WHEN WE SAY INSURED THAT'S WHEN
PEOPLE PAY IN FROM THE PAYROLL
AND PAYCHECK AND PART OF THAT
GOES TOWARDS THAT AND WE HAVE
SSI SUPPLEMENTAL SECURITY INCOME
FOR THOSE WITH LIMITED INCOME
AND RESOURCES FUNDED BY THE
GENERAL TAX REVENUES.
I'M GOING TO TOUCH ON THREE
AREAS WHERE SSA HELP IN ADDITION
TO HAVING THE SUPPORT PROGRAMS.
ONE IS EMPLOYMENT SUPPORT WHERE
WE HAD POLICIES IN PLACE TO HELP
OUR BENEFICIARIES RETURN TO WORK
BY PROTECTING THEIR CASH AND
MEDICAL BENEFITS AND THE FEAR OF
LOSING MEDICAL BENEFITS IS A
MAJOR CONCERN AND OFTEN PREVENTS
PEOPLE FROM TRYING TO STEP BACK
IN THE WORK WORLD.
AND WE ALSO HAVE EMPLOYMENT
SERVICES, NOTABLY OUR TICKET TO
WORK PROGRAM AND THESE ARE
PROGRAMS WHICH HELP BEN --
BENEFICIARIES TO RETURN TO WORK
AND CAN TAKE INDIVIDUALS WITH
EMPLOYMENT SERVICES, FOR
EXAMPLE.
THE SECOND AREA IS OUR RESEARCH
AND DEMONSTRATIONS.
SO AS I'VE NOTED HERE,
DEMONSTRATIONS, THE TEMPORARY
INITIATIVES TO IDENTIFY SERVICES
AND SUPPORTS AND POLICIES TO
SUPPORT PEOPLE WITH
DISABILITIES.
WE TRY AND SEE WHAT WORKS AND
SEE WHAT LESSONS WE LEARN AND
YOU CAN ALSO TRY TO SEE WHAT
LESSONS WE'VE LEARNED IF YOU SEE
THE FIRST BULLET.
THIS IS A LINK TO OUR STATE OF
THE SCIENCE MEETING AND LESSONS
LEARN FROM PAST DEMONSTRATIONS.
THIS IS A REALLY INTERESTING
SITE AND YOU CAN DOWNLOAD FOR
FREE THE BOOK AND PDF FORM WHICH
CONTAINS ALL THE PRESENTATIONS
AT THAT MEETING AND YOU CAN
LEARN A LOT ABOUT THE
DEMONSTRATIONS AND LEARN ABOUT
WHAT WE LEARNED FROM EXPLORING
WHAT WE'VE LEARNED IN THESE
DEMONSTRATIONS.
REALLY RECOMMEND THAT.
AND WE ALSO JUST COMPLETED OUR
SUPPORTED EMPLOYMENT
DEMONSTRATION PROJECT AND I
WROTE THAT UP IN THE LAST
MEETING ROUND ROBIN DOCUMENTS.
YOU CAN READ ALL ABOUT THAT
THERE AND OBVIOUSLY IN THE LINK
AND BE EVALUATED ON THE PROMISE
PROJECT AS WELL RECENTLY.
AND QUE -- WE HAVE LOTS OF
RESEARCH AND ANALYSIS AND
BULLETIN AND DATA SURVEYS AND
PEOPLE CAN USE THEIR OWN
STATISTICAL ANALYSES AND THE
PUBLIC USE FUNDS ARE CURRENTLY
AVAILABLE AND WE HAVE
STATISTICS.
WE HAVE STATISTICAL BOOKS WHICH
FOR EXAMPLE SSI AND SSDI AND
OFTEN BROKEN DOWN BY DIAGNOSIS
INCLUDING AUTISM AND YOU CAN GO
IN THERE AND THERE'S MOUNDS OF
DATA WHICH CAN BE DOWNLOADED IN
MULTIPLE FORMATS.
THAT'S ALL AVAILABLE FOR PEOPLE
TO USE.
I'M GOING TO MENTION RESEARCH
FUNDING OPPORTUNITIES.
WE HAVE THE ICAP INTERVENTIONAL
COOPERATIVE AGREEMENT PROGRAM.
THIS ALLOWS SSA -- IT'S A LEGAL
WAY TO ALLOW SSA TO PARTNER WITH
NON-FEDERAL GROUPS ON RESEARCH
RELATING TO SSA AND WE HAVE JUST
MADE AN ANNOUNCEMENT ABOUT THIS
AND YOU CAN READ ABOUT THOSE IN
OUR CURRENT ROUND ROBIN DOCUMENT
I WROTE UP AND YOU CAN SEE TWO
AWARDS.
ONE IS ON THE ABLE ACCOUNT
ACHIEVING A BETTER LIFE
EXPERIENCE ACCOUNT AND TAX
ACCOUNTS AND SAVINGS ACCOUNTS
FOR INDIVIDUALS AND THEIR
FAMILIES AND I PUSHED THEM IN
PREVIOUS MEETINGS BUT THERE'S A
SPECIFIC PROJECT RELATED TO
ENCOURAGING PEOPLE TO HAVE BE AN
UPDATE IN ACCOUNTS AND PART OF
THE DISABILITY CONSORTIUM THOSE
AGREEMENTS WERE ANNOUNCED IN
SEPTEMBER AND ANNOUNCED THEM IN
THE PREVIOUS MEETING AND READ
ABOUT THEM IN THE PREVIOUS ROUND
ROBIN DOCUMENT AND THERE'S A
PROGRAM FOR GRADUATE STUDENTS.
THIS WAS IN HIATUS WHILE WE
LOOKED FOR A NEW ADMINISTRATIVE
PARTNER.
WE HAVE STUDENTS SPECIFICALLY
COMPLETED PROJECTS ON AUTISM
THIS IS WHERE WE HAVE OUR AUTISM
SPECIFIC RESEARCH AND HAVE OUR
WONDERFUL AUTISM SPECIFIC
RESEARCH FROM THE GRADUATE
STUDENTS AND I WILL LET YOU KNOW
WHEN WE HAVE THE NEW AWARDS UP
AND READY TO GO.
WE'RE LOOKING FORWARD TO HAVE
NEW STUDENTS TO APPLY WHEN IT'S
UP AND RUNNING AGAIN.
THANK YOU SO MUCH AND THIS IS
FROM THE SOCIAL SECURITY
ADMINISTRATION.
>> THANK YOU, SO MUCH.
WE'LL GO BACK TO JENNIFER
JOHN
JOHNSON.
JENNIFER: CAN YOU HEAR ME?
I'M JENNIFER JOHNSON THE DEPUTY
COMMISSIONER FOR THE
ADMINISTRATION ON DISABILITIES
WHICH IS A CENTER WITHIN THE
ADMINISTRATION FOR COMMUNITY
LIVING.
FOR THOSE WHO AREN'T FAMILIAR
WITH THE ADMINISTRATION FOR
COMMUNITY LIVING OR ACL FOR
SHORT, WE ARE PART OF THE
U.S. DEPARTMENT OF HEALTH OR
HUMAN SERVICES OR HHS.
WE FUND DISABILITY IN 18
ORGANIZATIONS THAT HELP SUPPORT
PEOPLE WITH DISABILITIES AND
OLDER ADULTS TO LIVE, WORK AND
PARTICIPATE IN THEIR COMMUNITIES
AND ALSO PREVENT THEM FROM GOING
INTO INSTITUTIONS.
I WANT TO HIGHLIGHT SOME OF
ACL'S LEADING PRIORITIES.
FIRST TALKING ABOUT OUR WORK ON
EXPANDING HOME AND
COMMUNITY-BASED SERVICES OR HCBS
AND ADDRESSING THE INSTITUTIONAL
BIAS TO SUPPORT PEOPLE TO AGE IN
PLACE AND ALSO TO DIVERT PEOPLE
FROM GOING INTO INSTITUTIONAL
SETTINGS AS WELL AS SAFELY
TRANSITIONING THEM BACK INTO THE
COMMUNITY FROM INSTITUTIONAL
SETTINGS.
A BIG PART OF THAT WORK HAS BEEN
FOCUSSED ON WHAT WE CALL THE
HCBS SETTINGS RULE IN MARCH OF
THIS YEAR WILL BE ONE YEAR SINCE
THE END OF THE ADMINISTRATION TO
THE HCBS SETTINGS RULE.
WE'VE DONE A LOT OF WORK IN
COLLABORATION WITH CMS ON THE
IMPLEMENTATION DOING VISITS TO
THE IMPLEMENTATION OF THE
SETTINGS RULE.
NEXT I WANTED TO BRIEFLY
HIGHLIGHT THE WORK WE'RE DOING
ON SUPPORTING CAREGIVERS AND
BUILDING THE CARE GIVING
ECONOMY.
I THINK FOR MEMBERS OF THIS
TEAM, EVERYBODY IS FAMILIAR WITH
THE REAL CRISIS WE HAVE IN THE
DIRECT CARE WORKFORCE THAT
SUPPORTS PEOPLE WITH
DISABILITIES TO LIVE IN THE
COMMUNITY AS WELL AS OLDER
ADULTS.
AND THAT A LOT OF CARE IS THEN
ENDS UP BEING PROVIDED BY FAMILY
MEMBERS BECAUSE OF THE REAL LACK
OF DIRECT CARE WORKERS WE HAVE
RIGHT NOW.
SO WE HAVE A NUMBER OF
ACTIVITIES AND INITIATIVES THAT
WE'RE WORKING ON TO ADDRESS THE
CAREGIVER CRISIS AND WE HAVE A
SIGNIFICANT INVESTMENT AND A
GRANT TO THE NATIONAL COUNCIL ON
AGING ON THE DIRECT CARE
WORKFORCE AND THAT IS A PROJECT
THAT IS NOT ONLY ADDRESSING THE
CAREGIVING NEEDS OF OLDER ADULTS
BUT ALSO THE CAREGIVING NEEDS OF
PEOPLE WITH DISABILITIES ACROSS
THE LIFE SPAN.
WE ALSO HAVE THE NATIONAL
CAREGIVER SUPPORT PROGRAM AND
THE LIFE SPAN RESPITE PROGRAM
ALSO WITHIN ACL.
WE HAVE OVERSIGHT AND SUPPORT
THE REYES FAMILY CAREGIVER ACT
AND THE SUPPORTING GRANDPARENTS
RAISING GRANDCHILDREN ACT.
THROUGH THOSE COMMITTEES WE HAVE
ISSUED A NATIONAL STRATEGY ON
CAREGIVING TO ADDRESS THE
CAREGIVING CRISIS AND ALSO HELP
SUPPORT THE CAREGIVERS THAT ARE
PROVIDING CARE TO INDIVIDUALS
WITH DISABILITIES AND OLDER
ADULTS.
I WANT TO LAST TOUCH ON OUR
PRIORITY AROUND ADVANCING EQUITY
TO ADDRESS THE NEEDS OF
MARGINALIZED POPULATIONS AND
LOOK AT THE NATIONAL
PERSPECTIVE.
THIS IS REFLECTED IN EVERYTHING
WE DO.
SO IN JUST THE WORK AND
INITIATIVES I JUST DESCRIBED AS
AN EXAMPLE, IN THE
IMPLEMENTATION AND ADDRESSING
THOSE WE ARE TAKING AN EQUITY
LENS AND INTERSECTIONAL LENS TO
ALL THAT WORK.
I NOW WANT TO MOVE TO BRIEFLY
HIGHLIGHT PRIORITIES WITHIN THE
ADMINISTRATION ON DISABILITIES.
WHILE WE HAVE OTHER DISABILITY
RELATED WORK THAT WE DO IN ACL
INCLUDING THROUGH THE NATIONAL
INSTITUTE ON DISABILITY
INDEPENDENT LIVING AND
REHABILITATION RESEARCH, I'M
GOING TO BECAUSE OF THE SHORT
TIME WE HAVE WE PROMOTE HEALTH
EQUITY FOR PEOPLE WITH.
WE HAVE INITIATIVES AND
INVESTMENTS AND THERE'S SEVERAL
LINKS TO MORE INFORMATION ABOUT
THE PROJECTS.
WE DON'T HAVE WEBSITES FOR
EVERYTHING BECAUSE SOME OF THESE
ARE NEW SUPPORTS LIKE FOR
COMMUNICATION DEVICES.
WE HAVE GAPS INCLUDING PEOPLE
WITH DISABILITIES.
THE NEXT IS ON ECONOMIC
DISABILITY AND MOBILITY AND
FOCUSSED ON CAREER TRAJECTORIES
FOR PEOPLE WITH DISABILITIES AND
SUPPORTING COMPETITIVE
INTEGRATIVE EMPLOYMENT.
WE HAVE A STATE GRID THAT WE'RE
IN SEVEN STATES WITH GRANTS
CALLED COMMUNITY COLLABORATIONS
FOR EMPLOYMENT TO SUPPORT
COORDINATION AND COLLABORATION
AND FACILITATE YOUTH
TRANSITIONING TO POST SECONDARY
LIFE AND WE ALSO JUST TO
HIGHLIGHT ANOTHER PROJECT WE
HAVE IS A LONGITUDINAL STUDY
THAT LOOKS AT THE TRENDS AND
COMPETITIVE INTEGRATIVE
EMPLOYMENT FOR PEOPLE WITH
DEVELOPMENT DISABILITIES.
VERY IMPORTANT TO OUR WORK IS
PROTECTING RIGHTS AND PREVENTING
ABUSE.
WE LOOK AT HEALTH AND SAFETY IN
THE COMMUNITY AND BETTER USE OF
DATA TO MITIGATE INSTANCES OF
ABUSE AND NEGLECT.
WE'VE COME TO THE CLOSE OF THOSE
PROJECTS SOME ARE CLOSING
ACTIVITIES BUT WE'RE CONTINUING
EVALUATION OF THAT AND USING THE
FINDINGS TO HELP INFORM HOW TO
IMPROVE HEALTH AND SAFETY IN THE
COMMUNITY AND THEN WE ALSO HAVE
THE CENTER FOR YOUTH VOICE AND
YOUTH CHOICE WHICH IS ADDRESSING
THE PIPELINE AS YOUTH TRANSITION
OUT OF SCHOOL THEY GET MORE
INFORMATION AND FAMILIES GET
MORE INFORMATION ABOUT
ALTERNATIVES TO GUARDIANSHIP.
THE LAST IS EMPOWERING
INDIVIDUALS, FAMILIES AND
COMMUNITIES.
THIS IS ALSO VERY IMPORTANT TO
THE WORK WE DO IN VERY CORE TO
WHAT WE DO AND WE HAVE A NUMBER
OF PROJECTS THAT WE ARE FUNDING
THAT ARE INTENDED REALLY TO
BUILD SELF ADVOCACY AND
SELF-DETERMINATION SKILLS FOR
INDIVIDUALS WITH DISABILITIES
AND RAISE AWARENESS AND HELP
OTHERS IN UNDERSTAND HOW TO
SUPPORT THAT WITHIN INDIVIDUALS.
THAT'S MY LAST SLIDE.
>> LAST WE'LL HEAR FROM ROBERT
OCHSENDORF.
>> THANK YOU, SUSAN.
GOOD MORNING, EVERYBODY.
ROB OCHSENDORF WITH THE NATIONAL
SCIENCE FOUNDATION.
HAPPY TO BE HERE.
NSF MISSION IS LISTED HERE.
SO NSF WAS FOUNDED AS A FEDERAL
AGENCY IN 1950 FOR RESEARCH IN
ALL S.T.E.M. DISCIPLINES.
NSF THE MAIN FUNDER IN ACADEMIC
AREAS NOT SUPPORTED BY NIH AND
NASA.
THERE'S MATH AND PHYSICAL
SCIENCES AND ENGINEERING,
GEOSCIENCES, BIOLOGY, SOCIAL AND
BEHAVIORAL SCIENCES, S.T.E.M.
EDUCATION WHERE I RESIDE, I'M A
PROGRAM DIRECTOR IN THE S.T.E.M.
EDUCATION DIRECTOR AND THERE'S A
BRAND NEW DIRECTORATE FOCUSSED
ON TECHNOLOGY AND PARTNERSHIPS
WHICH BEGAN LAST YEAR.
PICTURED ARE NOTABLE AREAS OF
INVESTMENT BY NSF IN THE LAST 70
YEARS.
YOU CAN SEE AREAS WITH
ASTRONOMY, COMPUTER SCIENCE,
MATERIAL SCIENCE, NSF LIKES TO
TOUT THE EARLY SEARCH ALGORITHM
DEVELOPED BY THE FOUNDERS OF
GOOGLE WAS A DOCTORAL RESEARCH
GRANT TO STANFORD UNIVERSITY
WHETHER THOSE TWO INDIVIDUALS
WERE GRADUATE STUDENTS AND HAD A
GREAT IDEA HOW TO MORE
EFFICIENTLY AND EFFECTIVELY
SEARCH THIS NEW THING CALLED THE
INTERNET GIVING RISE TO GOOGLE.
NSF HAS A TRADITION COMMITTED TO
EXPANDING OPPORTUNITIES TO
S.T.E.M. FOR PEOPLE OF ALL
RACIAL ETHNIC GEOGRAPHIC AND
SOCIO ECONOMIC BACKGROUNDS,
SEXUAL ORIENTATIONS, AND TO
PERSONS WITH DISABILITIES.
SOME RECENT INITIATIVES AND
FUNDING ACTIVITIES AT NSF I'D
LIKE TO HIGHLIGHT.
LAST YEAR, NSF WITH NIF FUNDED A
$20 MILLION ARTIFICIAL
INTELLIGENCE INSTITUTE ON SPEECH
AND LANGUAGE AT THE UNIVERSITY
OF BUFFALO.
THIS A.I. INSTITUTE FOCUSES ON
TRANSFORMING EDUCATION WITH
PEOPLE WITH SPEECH AND LANGUAGE
PROCESSING CHALLENGES.
THE TEAM AIMS TO ADDRESS THE
CHALLENGES USING AN A.I. ENABLED
SCREENER AND ORCHESTRATER.
THE GOALS ARE TO USE A.I. TO
MORE RAPIDLY AND EFFECTIVELY
SCREEN YOUNG CHILDREN FOR SPEECH
DISABILITIES AND DELIVER
EVIDENCE-BASED AND CUSTOMIZED
SPEECH LANGUAGE INTERVENTIONS TO
STUDENTS IN NEED IN PRE K-12
STUDENTS AND THERE'S A SHORTAGE
TO MEET THE NEEDS IN
U.S. CLASSROOMS.
THE IDEA IS TO LEVERAGE ADVANCES
IN A.I., LARGE LANGUAGE MODELS,
NATURAL LANGUAGE PROCESSING
HOPEFULLY SCREEN MORE KIDS AND
DELIVER STRONGER INTERVENTIONS.
IN ADDITION, NSF HAS RECENTLY
FUNDED SIX WHAT WE CALL
CONVERGENCE ACCELERATOR PROJECTS
FOCUSSED ON INDIVIDUALS WITH
DISABILITIES.
THEY'RE ADDRESSING CHALLENGES
FACED BY PERSONS INCLUDING THE
ASSISTIVE AND REHABILITATIVE
TECHNOLOGIES AND OPPORTUNITIES
TO GAIN EMPLOYMENT AND THERE'S
SIX MULTI-DISCIPLINARY RESEARCH
TEAMS TO ADVANCE A CONVERGENCE
APPROACH BETWEEN RESEARCHERS,
INNOVATORS AND PERSONS WITH
DISABILITIES SPANG ORGANIZATIONS
ACROSS SECTORS.
THIS IS TO ENSURE THE NSF FUNDED
SOLUTIONS ADDRESS BARRIERS TO
EMPLOYMENT, FREEDOM OF MOVEMENT
AND QUALITY OF LIFE FOR PERSONS
WITH DISABLES.
RELATED TO THE IACC, NSF
PROJECTS CONTINUE TO BE
REPRESENTED IN THE AUTISM
RESEARCH DATABASE IN THE LAST
SEVERAL YEARS, NSF HAS FUNDED
HUNDREDS OF RESEARCH PROJECTS
FOCUSSED ON STEM LEARNING AND
WORKFORCE DEVELOPMENT ISSUES AND
BROADENING RESEARCH FOR
INDIVIDUALS ON THE AUTISM
SPECTRUM.
THESE ARE SOME OF THE PROMINENT
AREAS IN WHICH NSF FUNDS
AUTISM-RELATED RESEARCH.
YOU CAN SEE MY AREA MOSTLY IN
K-12 S.T.E.M. EDUCATION AND A
LOT OF WORK WE SUPPORT IN
UNDERGRADUATE S.T.E.M.
EDUCATION, INDIVIDUALS WITH
AUTISM AND ON COLLEGE CAMPUSES,
HOW ARE WE HELPING UNIVERSITIES
AND FACULTY TO BE SUPPORTIVE OF
INDIVIDUALS ON THE SPECTRUM
PURSUING S.T.E.M. EDUCATION
DEGREES.
INFORMAL S.T.E.M. EDUCATION
WHICH REFERS TO OUTSIDE OF
SCHOOL OPPORTUNITIES SO THINK
ABOUT MUSEUM, SCIENCE CENTERS,
POD CASTS, CHILDREN'S
TELEVISION.
WE FUND QUITE A BIT IN THAT
SPACE WITH AUTISM FOCUS AND
SMALL BUSINESS INNOVATION AND I
DON'T WORK IN THESE AREAS BUT
NSF FUNDS A LOT IN SMALL
BUSINESS INNOVATION.
THINK OF WEARABLE TECH TO ASSIST
PEOPLE ON THE SPECTRUM, S.T.E.M.
WORKFORCE DEVELOPMENT.
WE FUND COGNITIVE AND BEHAVIORAL
RESEARCH LOOKING AT
OPPORTUNITIES, CHALLENGES
RELATED TO S.T.E.M. LEARNING FOR
INDIVIDUALS ON THE SPECTRUM AND
THEN WE ALSO SUPPORT A VARIETY
OF CONVENINGS AND WORKSHOPS ON
THE TOPIC AS WELL.
SO THANK YOU AND HAPPY TO BE
HERE.
SUSAN: SO WE HEARD FROM A
SELECTION OF OUR FIWA MEMBERS
AND APPRECIATE WORKING WITH THEM
OB A REGULAR BASIS AND WE ONLY
HAVE A FEW MINUTES ABOUT 10
MINUTES TO TAKE QUESTIONS FROM
THE COMMITTEE.
>> I WANT TO THANK EVERYONE WHO
PRESENTED TODAY ACROSS THE
MULTIPLE AGENCIES --
>> OH, YEAH.
OKAY.
LET ME TAKE THE MASK OFF.
THANK YOU FOR EVERYONE WHO
PRESENTED AND FOR ALL YOUR HARD
WORK.
REALLY EXCITED ABOUT THE WORK
GROUP.
I DO HAVE A QUESTION THAT IS
CONCERNING AS I THINK ABOUT HOW
THIS WORK IS BEING TRANSLATED
OUT TO THE LARGER AUTISM
COMMUNITY.
SO THERE'S A LOT OF GREAT
INITIATIVES I HEARD ABOUT TODAY.
SOME I ALREADY KNEW ABOUT AND
SOME I'M LEARNING ABOUT BUT WHAT
IS THE SUSTAINABILITY PLAN OF
THESE VARIOUS INITIATIVES?
HOW IS IT REACHING THE LARGER
AUTISM COMMUNITY?
THAT'S WHAT I'M CONCERNED ABOUT.
WE ARE PRIVILEGED HERE TO BE AT
THIS TABLE AND HAVING THESE
CONVERSATIONS AND LEARNING ABOUT
WHAT'S HAPPENING BUT I'M
THINKING ABOUT AUTISTIC
INDIVIDUALS, THEY'RE FAMILY
MEMBERS AND CAREGIVERS WHO DO
NOT HAVE ACCESS TO THIS
INFORMATION.
WHAT IS BEING DONE TO ENSURE
THAT THIS IS GETTING OUT TO THE
LARGER MASSES?
THAT IS -- THIS IS SOMETHING
THAT KEEPS COMING UP FOR ME.
I DON'T THINK WE HAVE TIME TO
HEAR FROM EVERYONE.
WHAT I WOULD INVITE YOU ALL TO
DO IS IF WITH DON'T HAVE THE
TIME TO WRITE SOMETHING UP TO
SHARE WITH THE COMMITTEE BECAUSE
I THINK IT'S REALLY IMPORTANT TO
HIGHLIGHT HOW THIS WORK IS
TRANSLATING OUT TO THE COMMUNITY
AND HOW IS THE DISSEMINATION
PLAN AND HOW ARE WE SUSTAINING
THIS?
>> THAT'S A GREAT QUESTION AND
WONDERING IF THERE'S TEAM
MEMBERS THAT WOULD LIKE TO TAKE
A MOMENT TO ADDRESS THAT?
I'M THINKING IN PARTICULAR CDC
WOULD OTHERS LIKE TO DISCUSS
THIS?
>> IF I CAN JUMP IN AND SAY I'M
AN ACT EARLY AMBASSADOR AND IT
TAKES A LOT OF HARD WORK FOR US
TO GET INFORMATION OUT TO THE
COMMUNITY.
THERE ARE A LOT OF -- I'M SPEAK
FOR DC FOR A MOMENT AND SAY
THERE'S BEEN A LOT OF TURNOVER.
WE HEARD ABOUT WORKFORCE ACROSS
ALL THE AGENCIES AND HOW WE'RE
TRYING TO REACH FOLKS BUT THERE
ARE A GROUP OF US -- THERE'S 60
OF US ACROSS THE COUNTRY AND
DOING THIS WORK.
MAYBE THAT IS SOMETHING THAT
NEEDS TO BE TAKEN INTO
CONSIDERATION AS YOU'RE FUNDING
THE VARIOUS INITIATIVES.
I JUST WANTED TO THROW THAT OUT
AND SAY THIS IS SOMETHING WE'RE
CONSTANTLY WORKING ON.
I DON'T THINK EVERYONE'S GOING
HAVE THE ANSWER RIGHT NOW BUT WE
NEED TO BE THINKING ABOUT THIS
BECAUSE THE NUMBERS ARE GOING UP
WHICH IS AMAZING BECAUSE NOW
PEOPLE ARE GETTING THE HELP THEY
NEED.
IF WE CAN ACCESS IT, THERE IS
INDIVIDUALS WOULD HAVE THE
SKILLS TO SUPPORT THE COMMUNITY.
JOSH: [INDISCERNIBLE]
>> IN THE COMMENT SECTION SAID
THEY AGREE WITH WHAT YETTA HAS
STATED REGARDING DISSEMINATION.
JOSH: THANKS.
SCOTT.
SCOTT: I FORGOT TO MENTION I'M A
SENIOR AND POLICY ADVISER AT
ODEP, I FORGOT TO MENTION MY
TITLE.
SORRY ABOUT THAT.
WE TAKE SUSTAINABILITY IN MIND
WITH OUR REYES PROJECT AND OTHER
ACTIVITIES AND IT'S HELPING TO
INFORM THE LONGER TERM WORK TO
HELP NEURODIVERGENT PEOPLE AND
DRIVE WORK THROUGH POLICIES AND
PRACTICES.
SUSTAINABILITY IS ALWAYS PART OF
OUR WORK AND WE TAKE THE LONG
GAME, IF YOU WILL, BECAUSE
POLICY DEVELOPMENT TAKES MANY
YEARS OFF AND ENHANCE BUT I'M
GLAD THAT WAS EMPHASIZED AND
SOMETHING IF OUR SISTER AGENCIES
FOR INSTANCE HAVE OTHER IDEAS
FOR SUPPORTING OUR
SUSTAINABILITY AND SCALABILITY
WE'RE ALWAYS.
FOR OUR WORK ON INCREASING
ACCESS TO EMPLOYMENT AND
CAREERS.
SUSAN: THANK YOU SO MUCH, SCOTT.
I ALSO WANT TO SAY SOMETHING AS
NATIONAL AUTISM COORDINATOR AND
WE USE THE IACC TO AMPLIFY WHAT
EVERY AGENCY IS DOING AND EVERY
AGENCY PLANNING THEIR PROGRAM
HAS PLANS AND HAVE THEIR
AUDIENCE THROUGH THEIR SOCIAL
MEDIA AND OTHER MEANS BUT WE
ALSO AMPLIFY THAT BY HAVING THIS
PUBLIC MEETING AND OUR WEBSITE
IS PRETTY EXTENSIVE.
WE HAVE A NEWSLETTER, ETCETERA.
IF MEMBERS OF THE COMMITTEE HAVE
SUGGESTIONS ON SPECIFIC KINDS OF
DISSEMINATION THAT MAY BE
ACCOMPLISHED YOU'RE WELCOME TO
TALK WITH ME ABOUT IT AND WE CAN
LOOK INTO THAT BUT WE TRY TO AM
PLI -- AMPLIFY THE AGENCIES AS
WELL.
>> THIS IS AN IS VERY RELEVANT
CONVERSATION AND I'VE BEEN
TALKING TO CARE PROVIDERS AND
OTHERS THROUGH A BIG PROJECT
WE'RE WORKING ON ADD MADISON
HOUSE AND ONE BIG QUESTION IS
DISSEMINATION AND BEING ABLE TO
GET INFORMATION AND WE'RE
WONDERING IF IT WOULD BE A
POSSIBILITY OF A PUBLIC-PRIVATE
SITUATION SO VARIOUS AGENCIES
COULD HAVE AN IDENTIFICATION AND
PRIVATE THINGS BEING DONE
THERE'S A NEED FOR WORK TO MAKE
SURE CERTAIN THINGS ON THERE ARE
SOUND AND PEOPLE MAY TURN TO
I.S. BUT THERE'S OTHER
ANIMATIONS AND DIFFERENT THINGS
HAPPENING ACROSS THE COUNTRY AND
ALL GOOD THINGS ARE HAPPENING IN
ONE AREA SHOULDN'T BE SHARED IN
OTHER AREAS AND THERE'S NOT
REALLY A MECHANISM IN TAKING THE
KNOWLEDGE BASE SOMEONE IN ONE
LOCATION HAS FOUND THAT MAYBE
HELPFUL ACROSS THE COUNTRY.
THANK YOU.
>> THANKS.
JOSH: I THINK WE'LL TAKE OUR
BREAK NOW AND THERE'LL BE OTHER
OPPORTUNITIES [INDISCERNIBLE]
WE'LL BREAK NOW TO 11:50.
CONTINUED GOOD MORNING TO
EVERYONE.
THE NEXT SECTION OF OUR AGENDA
TODAY IS FOR US TO ADDRESS
OUTSTANDING IACC COMMITTEE
BUSINESS.
I'LL TURN THINGS OVER TO SUSAN
TO INTRODUCE OUR DISCUSSION FOR
THIS MORNING.
>> THANK YOU SO MUCH, JOSH.
I'M GOING TO START BY GIVING
CAMILLE PROCTOR A CHANCE TO
INTRODUCE HERSELF AND I KNOW YOU
JUST SAT DOWN BUT WE'LL LOVE TO
HEAR FROM YOU AS ONE OF OUR
NEWEST IACC MEMBERS.
>> HELLO, EVERYONE.
>> I'M CAMILLE PROCTOR AND
EXECUTIVE FOUNDER OF THE COLOR
OF AUTISM FOUNDATION.
WE SUPPORT FAMILIES AND
INDIVIDUALS IN UNDER SERVED
COMMUNITIES THROUGHOUT THE
UNITED STATES.
OUR FOCUS IS BUILDING EFFICACY
WITHIN THE FAMILIES AS WELL AS
SUPPORTING AUTISTIC INDIVIDUALS
ON THEIR PATHWAYS TO THEIR
VOICES AND CHOICES. THAT WOULD
PREVALENT IN MY COMMUNITY -- I
GOT TIRED OF TAKING THE ONE
MINORITY IN THE ORGANIZATIONS
AND USING THEM AS A TROPE OR
PROP TO GLAZE OVER THE ISSUES WE
DO HAVE IN YOU'RAN COMMUNITIES.
-- URBAN COMMUNITIES AND HOW
AND WHY THE COLOR OF AUTISM
FOUNDATION WAS FOUNDED.
THERE WAS A DEFINITE NEED AND
THERE WILL CONTINUE TO BE A
NEED.
THERE'S NOT ENOUGH MINORITIES AT
THE TABLE.
I JUST DECIDED, EXCUSE MY
EXPRESSION, TO BRING MY OWN DAMN
SEAT.
SUSAN: THANK YOU SO MUCH,
CAMILLE WE'RE PLEASED TO HAVE
YOU AS A SPEAKER AND HAD YOU ON
PANELS AND WILL BE CONTRIBUTING
TODAY WELL.
WE APPRECIATE THAT PERSPECTIVE.
WE'LL MOVE INTO COMMITTEE
BUSINESS.
SORRY, IT DOESN'T LIKE ME, I
DON'T THINK.
I'M GOING TO TELL YOU SOME ONAC
STAFF UPDATES AND TALK ABOUT
DOCUMENTS WE WORKED ON RECENTLY
AND OUR UPCOMING ACTIVITIES AS
WELL AS SUMMARY OF ADVANCES.
THERE'S A QUESTION.
>> THE COMMENT IS BRING A
FOLDING CHAIR.
SUSAN: THE ONAC STAFF UPDATES
ARE WE HAVE A NEW PERSON ON
BOARD ON OUR TAKE ANA CAPPUCCIO
BY TRAINING IS AN ATTORNEY AS
COORDINATOR AND WILL BE
ASSISTING WITH ADMINISTRATIVE
DUTIES IN THE OFFICE ALONG WITH
ANGELICE MITRAKAS AND STEVE JNI
ISAACSON RECENTLY GOT HIS DEGREE
IN SOCIAL WORK WHICH IS A
WONDERFUL ACCOMPLISHMENT AND AN
HE'S TAKEN ON A NEW ROLE AS OUR
FIRST NEURODIVERSITY LIAISON AND
ASSISTING IN OUTREACH AND
PROJECTS RELATED TO
NEURODIVERSITY SUCH AS AT WORK
AND WE APPRECIATED HIS
CONTRIBUTIONS TO THE IACC AND
WANTED TO PRIORITIZE THAT
OUTREACH AND CONNECTION WITH THE
COMMUNITY.
THANK YOU, STEVEN FOR SERVING.
AND THE AUTISM BIOMEDICAL AND
MEDICAL RESEARCH SELECTED BY THE
IACC INCLUDING ARTICLES
INCLUDING ALL SEVEN AREAS OF
STRATEGIC PLAN.
THE FULL REPORT CAN BE FOUND AT
THE LINK PROVIDED ON THE SLIDE
AND IT'S UP ON OUR WEBSITE IN
THE CAROUSEL WHEN YOU FIRST LOG
ON TO THE WEBSITE.
ALSO THERE'S AN EASY READ
VERSION ON THE REPORT LINKED
BELOW AND WE RECEIVED A PUBLIC
COMMENT THAT MENTIONED THEY
DIDN'T FEEL THE EASY READ WAS
EASY ENOUGH TO READ.
WE DID BOIL EACH RESEARCH PAPER
DOWN AND MAKE THEM READABLE BY
AT LEAST A SIXTH GRADER AND WE
DID NOT HAVE A WAY TO CONDENSE
TO PICTURES THAT WAS REQUESTED
IT BE DEPICTED IN PAPERS BUT
MOST RESEARCH PAPERS ARE
DIFFICULT TO SUMMARIZE IN A
PHOTO OR PICTURE.
THAT'S THE BEST WE CAN DO ON
TAKING A SCIENTIFIC PUBLICATION
DOWN TO A MORE CONDENSED VERSION
BUT WE HOPE THAT IT WILL BE
HELPFUL AND I KNOW I'VE RECEIVED
A LOT OF PUBLIC COMMENTS THAT
HAVE BEEN POSITIVE AND
SUPPORTIVE OF THAT.
THANK YOU SO MUCH.
NEXT, WE HAVE OUR UPCOMING
ACTIVITIES WHICH WE TALKED ABOUT
AT THE LAST MEETING.
SO IN OCTOBER 2023 THE IACC
VOTED TO FOCUS ON CO-OCCURRING
PHYSICAL AND MENTAL HEALTH
CONDITIONS AND THEIR IMPACTS ON
HEALTH OUTCOMES FOR THE 2024
IACC STRATEGIC PLAN UPDATE
BECAUSE WE ARE REQUIRED BY LAW
TO PROVIDE SOME TYPE OF UPDATE.
AND WE'RE GOING TO DO A DEEP
DIVE INTO THIS PARTICULAR AREA.
THE DRAFT REPORT ON CO-OCCURRING
CONDITIONS WAS ACTUALLY
INITIATED BY THE PREVIOUS
COMMITTEE AND WILL BE USED AS
THE FOUNDATION FOR THIS REPORT.
AS DECIDED IN 2023 BY THE
CURRENT IACC, ONAC IS GOING TO
WORK WITH THE WORKING GROUP
CHAIR, DR. JULIE TAYLOR TO
UPDATE THE DRAFT BEFORE IT COMES
BACK TO THE IACC FOR REVIEW.
AND IN ADDITION, ONAC PUBLISHED
A FORMAL REQUEST FOR PUBLIC
COMMENTS ON CO-OCCURRING
CONDITIONS ON BEHALF OF THE IACC
PER YOUR REQUEST AND THE RESULTS
OF THAT REQUEST FOR INFORMATION
WILL BE SHARED AT THE NEXT IACC
MEETING.
AND THE IACC WILL HAVE AN
OPPORTUNITY TO REVIEW THE
COMMENTS AND THE FINAL REPORT
OUR GOAL IS TO GET IT OUT IN
2024.
SO THIS IS A SLIDE ON THE
REQUEST FOR PUBLIC COMMENTS AND
IT IS OPEN UNTIL FEBRUARY 14 AND
THERE'S A WEB FORM WHERE YOU CAN
SUBMIT YOUR COMMENTS.
TO DATE, WE HAVE RECEIVED 678
COMPLETED SUBMISSIONS AND WE
ALSO HAVE 247 INCOMPLETE
SUBMISSIONS WHERE SOMEBODY MAY
NOT HAVE PRESSED SUBMIT AT THE
END OR MAYBE THEY'RE STILL
THINKING OR WORKING ON THIS.
WE WILL REACH OUT TO THOSE
INDIVIDUALS TO TRY TO GET THEM
TO COMPLETE THEIR COMMENTS.
WE HAVE ALREADY CAPTURED THE
INFORMATION IN OUR DATABASE BUT
WE DON'T WANT TO COUNT IT AS
COMPLETE UNTIL THE PERSON HAS
INDICATED THAT THEY'RE WANTING
TO SUBMIT IT.
WE'LL REACH BACK OUT TO THEM.
CAN STILL SUBMIT COMMENTS IF
YOU'RE HAVING ANY DIFFICULTY
WITH SUBMISSIONS RIS RIGHT TO OE
AND GET YOU PERSONAL ASSISTANCE
TO HELP SUBMIT YOUR COMMENT AND
THIS IN THE FEDERAL REGISTER AND
FEEL FREE TO SHARE THIS WITH
YOUR NETWORKS WIDELY IF YOU NEED
MATERIALS LIKE THE E MAIL THAT
WE SENT OUT YOU NEED A COPY OF
THAT SO YOU CAN FORWARD IT BY
E-MAIL OR IF YOU NEED A SOCIAL
MEDIA GRAPHIC LET US KNOW WE CAN
HELP YOU OUT WITH THAT BUT WOULD
LOVE TO GET AS MUCH AS INPUT AS
POSSIBLE TO GET THE MOST TIMELY
UPDATE TO THIS ISSUE IN THE NEXT
STRATEGIC PLAN UPDATE.
SO STEPS FOR THIS INCLUDE ONAC
IS GOING TO CAT DWOER --
CATEGORIZE THIS AND GET IT BACK
TO YOU IN APRIL AND WORK ON
UPDATING THE DRAFT REPORT AND
INCORPORATING FEEDBACK FROM THE
REQUEST FOR PUBLIC COMMENTS AND
IACC MEMBERS WILL BE RECEIVING
THE OPPORTUNITY TO REVIEW THE
DRAFT AND WORK THROUGH THIS TO
FINALIZE THE REPORT THROUGHOUT
THE YEAR.
SO THAT'S THE END OF COMMITTEE
BUSINESS WHICH IS PRETTY SHORT.
WE DID FINISH OUR BIG STRATEGIC
PLAN UPDATE LAST FALL AND THAT
HAS GONE OUT ALREADY.
WE'VE COMPLETED THE 2022 SUMMARY
OF ADVANCES.
WE'RE WORKING TOWARDS 2023 WHICH
IS THE NEXT ITEM OF BUSINESS.
I'LL TAKE A PAUSE BEFORE WE MOVE
INTO SUMMARY OF ADVANCES TO ASK
IF THERE'S ANY QUESTIONS.
>> WHEN YOU ALL LOOK AT THE
PUBLIC COMMENTS, ARE YOU KEEPING
TRACK OF WHAT STATES AND
TERRITORIES ARE ACTUALLY
SUBMITTING COMMENTS FROM?
>> WE HAVE SOME VOLUNTARY
INFORMATION WE'VE PROVIDED.
WE DIDN'T ASK THEM THEIR STATES.
WE ASKED FOR WHETHER THEY MIGHT
BE AN INDIVIDUAL WITH AUTISM, A
PARENT, AN ADVOCATE, A
RESEARCHER, ETCETERA.
WE'LL HAVE THAT INFORMATION.
THEY CAN VOLUNTARILY PROVIDE
THEIR NAME AND ORGANIZATION IF
THEY WISH BUT I DOUBT WE'LL
PROBABLY HAVE STATES AND
TERRITORIES.
>> NOW THAT I'M THINKING ABOUT
IT, I'M THINKING, NO, YOU
WOULDN'T HAVE IT.
SORRY ABOUT THE QUESTION.
I'M JUST CURIOUS TO KNOW.
SUSAN: IF THE PERSON VOLUNTARILY
GIVES THEIR NAME AND THEIR
AFFILIATION, MANY PEOPLE WE
FOUND IN THE AUTISM COMMUNITY
LIKE TO HAVE THEIR NAME SHARED
WITH THEIR PUBLIC COMMENT SO WE
WANT TO GIVE THAT OPPORTUNITY
FOR ACKNOWLEDGEMENT.
PRIVACY NOT ALWAYS THE DESIRE OF
THE COMMENTER BUT WE WANT TO
PROTECT THE PRIVACY OF
INDIVIDUALS WHO DON'T WANT THEIR
INFORMATION SHARED.
WE'LL HAVE THAT DEMOGRAPHIC
BREAKDOWN FOR YOU IN TERMS OF
HOW MANY AUTISTIC INDIVIDUALS
MAY HAVE SUBMITTED BASED ON
WHOEVER VOLUNTARILY FILLS THAT
PART OUT.
>> THANK YOU, SUSAN.
THE MEMBERS HAVE BEEN IN
ARTICLES FROM DECEMBER OF 2023
AND TODAY YOU'RE GOING TO
DISCUSS NOMINATIONS AND AFTER
THIS MEETING IS OVER, ONCE
YOU'VE DISCUSSED THE NOMINATIONS
AND DECIDED IT YOU'RE
ELIMINATING OR ADDING OR HAVE
COMMENTS ON ANYTHING, AFTER THIS
MEETING WE'LL GIVE YOU THE
OPPORTUNITIES TO WORK ON THE TOP
20 ARTICLES TO BE PRESENTED IN
THE PUBLICATION AND ALL THE
REMAINING NOMINATIONS WILL BE
LISTED IN THE BACK OF THE
PUBLICATION.
OUR OFFICE, THE ONAC WILL WORK
ON PREPARING DRAFT SUMMARIES AND
THE PUBLICATION AND THE IACC
MEMBERS WILL HAVE A CHANCE TO
PREVIEW IT BEFORE PUBLISHED AND
WE LOOK FORWARD TO HELPING YOU
GET THE PUBLICATION OUT IN THE
SPRING TO SUMMER 2024.
SO THANK YOU AND I'LL TURN IT
OVER TO JOSH.
>> Josh: THANKS, SUSAN AND THANK
ALL OF TO YOUR NOMINATIONS.
WE HAVE A GRANT TOTAL OF 76
NOMINATIONS.
SO 76 CONTRIBUTIONS TO THE
SCIENTIFIC LITERATURE ON
ADVANCES RELEVANT TO AUTISM AND
I THINK VIRTUALLY ALL OF THEM
REPRESENT WONDERFUL
CONTRIBUTIONS TO THAT LITERATURE
AND OUR TASK HERE IS TO TRY TO
IDENTIFY 20 WE'LL COLLECTIVELY
PUT FORTH AS IS OUR
RESPONSIBILITY UNDER THE AUTISM
CARES ACT TO CONGRESS AN TO THE
PUBLIC OF BEING REPRESENTATIVE
OF THE KINDS OF ADVANCES THAT
WILL CHANGE THINGS ON THE GROUND
FOR INDIVIDUALS, FAMILIES AND
COMMUNITIES WITH AUTISM.
THE PROCESS THAT WE'RE TASKED
WITH TODAY IS NOT TO GO THROUGH
EACH AND EVERY ONE OF THEM WE
CAN'T TAKE IT THROUGH 76 IF WE
WENT TO DISCUSS EACH OF THEM BUT
IN EACH OF THE SEVEN CATEGORIES
IS GIVE YOU AN OPPORTUNITY TO DO
ONE OF THREE THINGS FOR ANY OF
THE NOMINATIONS IN THAT CATEGORY
THAT YOU FEEL IS NECESSARY TO
BRING UP TO THE GROUP.
WE'RE GOING ASSUME AT BASELINE
THAT YOU CAN READ AND GET A
SENSE OF THE TOPIC AND THE
IMPORTANCE AND THE QUALITY OF
THE WORK FROM THE ABSTRACT.
SO I WOULD LIKE TO SAY LET'S
HEAR ABOUT THREE DIFFERENT TYPES
OF CATEGORIES.
ONE IF THERE'S AN ARTICLE THAT
BASED UPON OUR CRITERIA, WHICH
IS THAT IT SHOULD BE AN
ADVANCEMENT THAT'S WORTHY OF
PUBLIC OF EXPRESSING THE PUBLIC,
IT SHOULD BE WELL POWERED WITH A
WELL DONE RIGOROUS STUDY AND
SHOULD BE PRIMARY RESEARCH NOT
REVIEWS OF OTHER LITERATURE.
THIS IS CRITERIA WE AGREED ON
THOUGH WE MADE EXCEPTIONS IN THE
PAST.
IF YOU FEEL WE SHOULD NOT BE
VOTING FOR IT, PLEASE RAISE THAT
WITH US TODAY.
IF THERE'S AN EXCEPTIONAL STUDY
IN HERE THEY'RE ALL EXCEPTIONAL
STUDIES BUT FOR WHATEVER REASON
YOU THINK IT'S IMPORTANT TO MAKE
A BRIEF COMMENT IN SUPPORT OF
THAT ARTICLE, PLEASE DO AND
SIMILARLY A BRIEF COMMENT
AGAINST INCLUSION IN THE FINAL
20 ON ANYTHING YOU FEEL AGAIN
ISN'T EXPRESSED WELL IN THE
ABSTRACT AND YOU NEED TO MAKE
THAT COMMENT.
SO LET ME OPEN IT UP FOR
COMMENTS ON THE BODY OF
NOMINATIONS IN THE FIRST
CATEGORY, SCREENING AND
DIAGNOSIS WHICH IS NOMINATIONS
1-8 ON PAGES 2-5 OF THE
DOCUMENT.
LET ME OPEN IT UP IF THERE'S ANY
INDIVIDUALS ON THE COMMITTEE WHO
WOULD LIKE TO MAKE A COMMENT IN
ONE OF THOSE THREE AREAS.
>> I HAVE A QUESTION FOR
DR. FRAZIER ABOUT --
>> Josh: CLOSER TO THE MIC,
PLEASE.
>> DR. FRAZIER'S NOMINATION FOR
THE EYE TRACKING STUDY.
DO YOU HAVE AN EXAMPLE OF THE
POWER --
>> IT WAS WELL POWERED.
THIS IS THE JAMA PUBLICATION.
>> Josh: SOCIAL, VISUAL
ENGAGEMENT.
>> THEY'VE BEEN DOING THIS A
LONG TIME.
IT'S VERY WELL POWERED IT'S A
PRE-REGISTERED STUDY.
THEY ARE DID EVERYTHING RIGHT IN
THIS WORK.
>> I'LL ADD TO SAY THERE WAS AN
ORIGINAL STUDY AND REPLICATION
STUDY AND THE REPLICATION STUDY
THERE WAS A VALIDATION STUDY
THAT WENT TO THE FDA ACROSS I
BELIEVE AT LEAST FOUR SITES AND
ALMOST 500 PEOPLE.
>> MY PROBLEM IS I DON'T KNOW
HOW MANY PEOPLE ARE IN THE SITE.
>> Josh: 199 ENROLLED CHILDREN.
>> THAT'S WHAT I WAS LOOKING
FOR.
THANK YOU.
THE PMIDs ARE CLICKABLE AND GOES
THROUGH THE ARTICLES.
THE ANSWER TO DENA'S QUESTION
AND OTHERS MAY BE ABLE TO BE
FOUND THAT WAY.
I WANT TO MAKE THE POINT THERE
ARE TWO ARTICLES HERE FROM
JONES, CLAIM AND RICHARDSON AND
LAST AUTHOR, QUINN.
THE ONE TOM NOMINATED IS NUMBER
3 AND THE MORE RECENT MORE
MATURE REPRESENTATION OF THE
PROJECT.
I WOULD FAVOR NUMBER 3 OVER
NUMBER 4 WHICH IS EARLIER WORK
FROM THE SAME GROUP.
>> Josh: I FEEL COMFORTABLE
WITHDRAWING NUMBER 4 NIH
NOMINATED IT AND NUMBER 3 YOU'RE
SEEING IS THE MORE COMPREHENSIVE
EXAMPLE OF THAT WORK.
WE'LL WITHDRAW NUMBER 4 AND
WON'T VOTE ON THAT ONE.
ANY OTHERS?
I WOULD LIKE TO MAKE A QUICK
COMMENT ABOUT FAM ET AL. NUMBER
7 ON THE LIST.
THIS IS OBVIOUSLY A REALLY
IMPORTANT ABOUT EQUITY AND UNDER
REPRESENTED GROUPS IN THE CARE
MODELS AND THE GET SET EARLY
PROGRAM IS AN EVIDENCE-BASED
APPROACH TO THE SCREEN, EVALUATE
AND TREAT MODEL WE HEARD ABOUT A
LITTLE BIT EARLIER TODAY AS
SOMETHING WE THINK CAN REALLY
CHANGE THE COURSE FOR TREATMENT
IN EARLY AUTISM AND HIGHLIGHT
THAT TO MAKE SURE WE UNDERSTAND
THE STUDY ADDRESSES MANY ISSUES
THAT HAVE BEEN RAISED BEFORE
THIS BODY IN THE PAST.
WE'LL MOVE ON TO THE BIOLOGY
SECTION FROM PAGE 5 TO 11.
NOMINATIONS 9 THROUGH THROUGH
21.
ANY COMMENTS HIGHLIGHTS, ANY YOU
SUGGEST MAY NEED TO BE
WITHDRAWN?
HEARING ON WE'LL MOVE ON TO THE
NEXT SECTION.
PAUL.
>> A NUMBER OF ARTICLES
REPRESENT WORK IN ANIMAL MODELS
AND OTHER EXPERIMENTAL MODELS
NOT IN PEOPLE.
I WONDER IF YOU, DR. DOR DON,
HAVE COMMENTS ON THE SUITABILITY
OF THOSE PAPERS FOR OUR VOTING.
>> THAT'S A GOOD POINT.
THERE'S A FEW IN THERE.
WHAT WE'RE DOING IN APPEALING TO
THE PUBLIC WE'RE NOT TRYING TO
APPEAL TO OTHER SCIENTISTS
SAYING THERE'S A HOT AREA OF
ADVANCEMENT OR COOL TECHNOLOGY.
WHAT I'M TRYING TO LOOK AT AS I
READ THESE NOMINATIONS IS WHICH
ONES ARE THE ONES WE SHOULD KNOW
ABOUT BECAUSE THEY HAVE THE
POTENTIAL FOR TRANSLATION?
SOMETIMES WE CAN GET TO
POTENTIAL TARGETS FOR TREATMENT
AND NOT TO BIAS YOU BUT IF I'M
LOOKING AT A HUMAN STUDY BY
SCHWARTZ ET AL. THIS IS A STEP
FORWARD IN BEING ABLE TO
POTENTIALLY DEVELOP BIOMARKERS
BUT IT DOESN'T HAVE THE ABILITY
TO THEN GO IN AND ASK WHAT ARE
THE MOLECULAR OR CELLULAR
ELEMENTS WE CAN TARGET WITH A
THERAPY BE IT A DRUG OR
STIMULATION PARADIGM.
I'D LOOK AT THE ABSTRACTS AND
TRYING TO SAY WHICH ONES HAVE
THE POTENTIAL TO DEVELOP INTO
SOMETHING THAT WOULD BE OF USE
AND THAT'S HOW I WOULD TRY TO
EVALUATE IT AND THAT'S THROUGH
ANIMAL OR HUMAN WORK.
THAT'S MY BIAS.
OTHERS?
>> IF THERE'S NO OTHER QUESTIONS
OR COMMENTS ON THE BIOLOGY
SECTION.
GO AHEAD, SUSAN.
>> Susan: I WANT TO FOLLOW UP ON
THIS AND GLAD PAUL RAISED IT.
WE NEED TO LOOK CAREFULLY AT THE
ANIMAL STUDIES.
AND LOOKING AT BEHAVIORS IN THE
MICE THAT MIMIC BEHAVIORS IN
CHILDREN OR INDIVIDUALS THAT ARE
AUTISTIC.
WE NEED TO TAKE A STEP THAT THAT
WORK ISN'T IMPORTANT BUT IS IT A
FINDING MOVING THE FIELD IN A
DIFFERENT DIRECTION AND I WOULD
ARGUE IF YOU'RE LOOKING AT
BEHAVIORS YOU'RE TRYING TO FIND
IN RODENT MODELS WE KNOW ARE
PRESENT IN AUTISTIC INDIVIDUALS
THAT MAY NOT BE ONE OF THE ONES
WE WANT TO HIGHLIGHT ON OUR LIST
FOR THAT.
THANK YOU, SUSAN I APPRECIATE
THAT.
THIS IS THE CHEN ET AL. ARTICLE
ON AVERSIVE RESPONSES TO TOUCH
IN MICE.
I AGREE THAT BEHAVIOR IN A MOUSE
IS DIFFERENT THAN A HUMAN AND
NEED LEVELS OF TRANSABILITY TO
BE ABLE TO INTERPRET MUCH FROM
THE STUDIES.
THE STRENGTH IS THE USE OF IN
THIS CASE A BONA FIDE MUTATION
WHICH WE KNOW IN HUMANS LEADS TO
INCREASE RISK FOR AUTISM THE
FRAGILE X MUTATION.
THE RELIANCE ON A BEHAVIORAL
READOUT WHICH CAN BE CHALLENGING
TO TRANSLATE FROM RODENTS TO
HUMANS SOCIAL TOUCH MEANS
SOMETHING POTENTIALLY VERY
DIFFERENT IN A MOUSE THAN IN A
HUMAN BEING AND WE HAVE TO
REMEMBER THAT.
THANK YOU FOR THAT DISCUSSION.
AS YOU GO THROUGH THE
NOMINATIONS YOU CAN KEEP THESE
IDEAS IN MIND WHETHER YOU WISH
TO ENDORSE ANY OF THOSE STUDIES
AND MOVE ON TO THE NEXT AREA OF
GENETIC AND ENVIRONMENTAL RISK
FACTORS FOR -- IT'S RISK AND
RESILIENCE WHICH IS ON PAGES 11
TO 14 COMPRISING NUMBERS 22
THROUGH 28.
ANY COMMENTS OR QUESTIONS ON ANY
OF THOSE NOMINATIONS.
>> I HAVEN'T HAD TIME TO GO
THROUGH THEM THOROUGHLY BUT I
HAVE CONCERN SOME OF THESE
PROBABLY SHOULD NOT BE PROMOTED
IN THIS PACKAGE.
EVEN JUST THE NUMBER 22 THE PFAS
ONE EXCELLENT RESEARCH GROUP AND
THEIR FINDINGS ARE SORT OF --
THEY CLEARLY SAY THEY'RE A BIT
EQUIVOCAL.
IN THIS AREA ESPECIALLY WHEN
WE'RE TALKING ABOUT SOME OF THE
ENVIRONMENTAL EXPOSURES AND
CHEMICAL ONES IN PARTICULAR AND
THE PM AND THINGS, SINCE I'M NOT
SURE HOW IT FORMS PEOPLE'S
DECISIONS OR POLICIES ESPECIALLY
WHEN THE FINDINGS ARE NOT SO
CLEAR, I GUESS I JUST WANT TO
SORT OF HAVE THAT IN THE FRONT
OF PEOPLE'S MINDS AS THEY'RE
LOOKING AT THESE AND I'LL LOOK
MORE CLOSELY.
>> Josh: THANK YOU.
I'M LOOKING AT THE ABSTRACT
RIGHT NOW AS QUOTED IN HERE, NOT
THE ABSTRACT, THE DESCRIPTION OF
IT AND IT DOES SOUND EQUIVOCAL.
BLOOD LEVELS WERE NOT STRONGLY
LINKED TO CHANGES IN SRS
SCORE -- THE SEX DIFFERENCES IN
EXPOSURE WAS NOT ROBUST AND THE
CONCLUSION -- THE NEED FOR
FURTHER INCLUSION COULD SUGGEST
IT'S NOT READY FOR PRIME TIME.
>> THIS HAS TO DO WITH THE
QUESTION RAISED.
NUMBER ONE, WE GET CAUGHT UP --
I WANT TO WARN US AGAINST VOTING
DOWN NEGATIVE FINDINGS.
BESIDES THIS.
THIS CAN STAND ON ITS OWN BUT
HAS TO DO WITH EQUIVOCAL
FINDINGS.
THEY DIDN'T FIND AN EFFECT.
DOES THAT MAKE IT NON-IMPORTANT
BECAUSE IT WASN'T A POSITIVE
EFFECT.
IT WAS LACK OF EFFECT.
WE NEED TO THINK ABOUT THAT AND
I KNOW IF HER CONCERNS WERE MORE
BECAUSE THE OUTCOME WAS AUTISTIC
TRAITS NOT NECESSARY AN AUTISM
DIAGNOSIS PER SE.
MAYBE YOU CAN PROVIDE GUIDANCE
ABOUT IS THERE A LINE OR DO WE
USE OUR OWN JUDGMENT ABOUT THE
LINE BETWEEN AUTISTIC TRAITS AND
DIAGNOSIS?
>> IT'S A GREAT QUESTION.
WE'RE TRYING TO DETERMINE
WHETHER WE WANT TO REJECT THIS
OUTRIGHT OR NOW YOU HEARD THINGS
AND MAYBE IT'S A RECOMMENDATION
THAT YOU NOT VOTE BUT MAKE YOUR
OWN MIND UP AND WE'RE TRYING TO
FIGURING THAT OUT JUST NOW AND I
AGREE 100% ON NEGATIVE FINDING.
THERE'S IMPORTANT NEGATIVE
FINDINGS IN THIS FIELD THAT CAN
HELP REASSURE PEOPLE AND GUIDE
POLICY DECISION MAKING.
I THINK THE COMMENT AND QUESTION
HERE IS WHETHER THIS IS A
NEGATIVE FINDING OR WHAT WE
COULD CALL AN EQUIVOCAL FINDING
MEANING A FINDING WE CANNOT MAKE
CONCLUSIONS FROM AND WHILE THOSE
FINDINGS ARE IMPORTANT IN THE
SENSE THAT IT DOES SAY WE NEED
MORE RESEARCH, DO WE WANT TO PUT
ONE OF THOSE EQUIVOCAL FINDINGS,
ONE WE CAN'T MAKE INCLUSIONS
FROM FORWARD AS AN ADVANCE AS
OPPOSED TO RECOGNIZING THE
IMPORTANT CONTRIBUTION WE'RE NOT
READY YET.
WERE YOU RAISING YOUR HAND?
>> AS SOMEONE THAT WORKS WITH
THE ECHO GROUP I CAN SAY THEY
DON'T WANT TO LOOK AT RISK
FACTORS FOR AUTISM BUT LOOK AT
AUTISM SYMPTOMOLOGY AND
PURPOSELY LOOKED AT AUTISM
TRAITS IN AN EFFORT TO WORK
COLLABORATIVELY WITH THE AUTISM
COMMUNITY.
WE'RE TRYING TO LOOK AT
SYMPTOMOLOGY INSTEAD BECAUSE
THAT'S BEEN REQUESTED FROM THE
COMMUNITY.
>> Josh: I'M NOT HEARING A
STRONG CONSENSUS WE SHOULD
REMOVE THIS.
YOU'VE ALL HEARD SOME CONCERNS
AND TAKE THAT INTO ACCOUNT TO
MAKE YOUR DECISION WHICH TO VOTE
FOR.
SINCE NICHD NOMINATED IT,
WHETHER ALICE GOW HAS ANYTHING
TO SAY ABOUT THE ARTICLE AIMS
22.
>> IT'S A WELL POWERED STUDY AND
BROUGHT UP FOR THE IACC
CONSIDERATION.
I DIDN'T UNDERSTAND THE ISSUES
RAISED AND DISCUSSED NOW.
>> NOTHING TO ADD.
>> Josh: WE'LL MOVE ON TO THE
NEXT SECTION.
MORENIKE HAS TO COMMENTS.
WE'RE NOT MICE AND I APPRECIATE
THE TERM USE OF THE TERM TRAITS
AND INTENTIONAL EFFORTS TO BE
RESPECTFUL IN WORDING.
>> Josh: THANK YOU.
OKAY.
I AGREE WITH BOTH THOSE COMMENTS
AS WELL.
WE WILL MOVE ON THEN TO THE NEXT
SECTION WHICH IS ON
INTERVENTIONS WHICH IS LOCATED
ON PAGE 14 THROUGH 17 OF THE
DOCUMENT YOU RECEIVED.
NOMINATIONS 29 THROUGH -- I
CAN'T FIND PAGE 17 -- THROUGH
36.
ANY QUESTIONS OR COMMENTS?
JENNY, START US OFF.
>> HI, FOR NUMBER 30, THE
INTERVENTION STUDY DOESN'T LOOK
LIKE IT'S SPECIFICALLY TO AUTISM
AND NEURAL DEVELOPMENT
DISABILITIES IN GENERAL THOUGH
AUTISM WAS MENTIONED BUT I'M
WONDERING IF THE COMMITTEE FEELS
THE STUDY IS JUST TOO BROAD AND
NOT SPECIFICALLY AUTISM.
>> Josh: ANY COMMENTS OR
RESPONSES TO JENNY'S POINT?
ARE YOU SUGGESTING WE MIGHT WANT
TO WITHDRAW IT OR JUST MAKING
THE CASE?
SO THERE'S A SUGGESTION WE
SHOULD WITHDRAW IT BECAUSE IT'S
NOT SPECIFIC TO AUTISM.
ARE THERE OBJECTION TO
WITHDRAWING IT?
>> I DON'T HAVE A SPECIFIC
OBJECTION TO WITHDRAWING IT.
I'M REALLY GLAD JENNY BROUGHT
THIS UP BECAUSE I THINK IT'S
MORE OF A POLICY ISSUE FOR US TO
CONSIDER.
I DO WANT TO JUST POINT OUT THAT
THE FOCUS OF THE ARTICLE IS ONE
THAT IS POTENTIALLY VERY
PRACTICAL ADVICE FOR THE PUBLIC
REGARDING DIET AND IT'S EFFECT
ON NEURODIVERGENT POPULATIONS
BUT IF WE HAVE A POLICY OF
CHOOSING ARTICLES FOR THIS
BRIEFING THAT ARE ONLY GOING TO
BE AT THAT WE SHOULD KEEP THAT
IN MIND WHEN WE ARE RECOMMENDING
THEM.
IF WE DON'T HAVE THAT POLICY
THEN I THINK THAT'S A DIFFERENT
QUESTION.
>> I DON'T THINK WE EXPRESSED
THAT IN THE PAST.
>> Susan: WE SPOKE OF TRYING TO
STICK WITH AUTISM BECAUSE IF WE
START CONSIDERING ALL NEURAL
DEVELOPMENT DISABILITIES IT
WOULD POTENTIALLY OPEN IT UP TO
SOMETHING VERY BROAD AND WOULD
NOT BE SPECIFIC TO AUTISM SO
WE'VE HAD THOSE DISCUSSIONS.
MAYBE NOT IN THIS ITERATION OF
THE COMMITTEE BUT IT'S HAPPENED
BEFORE.
>> Josh: I MAY SUGGEST WE LEAVE
THIS IN WITH THE RECOGNITION AND
POINT YOU'VE MADE IT IS NOT
SPECIFIC TO AUTISM AND INCLUDES
IN PARTICULAR ADHD AS WELL AS
OTHER DEVELOPMENT DISABILITIES
WHICH MAY MAKE THE CONCLUSIONS
LESS BROAD AND IF YOU'RE
CONSIDERING VOTING FOR IT YOU
MAY LOOK AND SEE WHETHER THERE
WAS EVIDENCE THE SUBSET OF
INDIVIDUALS -- THE RISK OF
AUTISM WAS LOWERED BY THE DIET
OR NOT AND I'M GUESSING WE
PROBABLY CAN'T MAKE THAT COULD
BE COLLUSION BUT I HAVEN'T READ
IT MYSELF TO KNOW.
>> I LOOKED AT THE PAPER AND
THEY DO PARS OUT THE RESULT ARE
BY AUTISM AND ADHD AND OTHER
NEURAL DEVELOPMENT DISABILITIES.
>> Josh: CLOSER.
>> THE DETAILS IN THE PAPER ARE
STRATIFIED BY SPECIFIC NEURAL
DEVELOPMENT DISORDERS INCLUDING
AUTISM.
THE DETAILS ARE IN THE PAPER.
NOT IN THIS DESCRIPTION OR IN
THE ABSTRACT BUT IT'S IN THE
PAPER.
JUST IN MY GLANCE.
>> Josh: AND DO YOU RECALL
WHETHER THE EFFECT WAS SIMILAR
OR STRONGER, WEAKER IN THE
AUTISM SUB GROUP
>> I CAN SCROLL DOWN AND LOOK AT
TELL.
IT LOOKS LIKE NO ASSOCIATION.
>> Josh: IF THE GROUP THAT
NOMINATED IT WOULD LIKE TO SPEAK
UP.
>> NOTHING TO ADD BUT IN GENERAL
IT'S GREAT THE GROUP'S GOTTEN
MORE ARTICLE AND PROBABLY MAKING
IT HARDER SO IF THERE ARE MORE
COMMON THINGS WE SHOULD CONSIDER
AS WE'RE NOMINATING THAT COULD
BE HELPFUL TOO WHETHER SAMPLE
SIZE OR SPECIFICITY TO AUTISM
AND THERE'S A RANGE OF THINGS
THAT COULD BE HELPFUL TO
CONSIDER.
>> Josh: THAT'S A GOOD
SUGGESTION.
WE'LL WORK ON SOME THAT.
>> DINAH CAN DO IT FIRST.
>> I HAD A COMMENT ON THE
HATFIELD STUDY NUMBER 33.
IT'S SUPER COOL LOOKING AT
EXERCISING INTERVENING TO
INCREASE PHYSICAL HEALTH AND
THERE'S OF IT'S A PRELIMINARY
STUDY AND THE END IS 5.
THOUGH I AM REALLY EXCITED TO
SEE WHERE THIS GOES I'M NOT SURE
THIS STUDY IS DEFINITIVE ENOUGH
TO BE ON THE LIST.
I WANTED TO KNOW WHAT EVERYTHING
ELSE THOUGHT.
THIS IS NUMBER 33 HATFIELD BETA
TEST.
>> Josh: ANY COMMENTS ON THAT?
>> IT MAY BE HELPFUL TO HAVE THE
CRITERIA TO REVIEW THESE VAST
MAJORITY ARE NOT RESEARCHERS OR
AT TINY UNIVERSITIES WITH A
SMALL LIBRARY AND WE NEED TO
KNOW WHAT THE BREAKDOWN WAS BY
GENDER IF WE HAVE IT.
WHATEVER THE SMALL CRITERIA ARE.
THIS ONE WHAT'S MISSING IS IS
THE OUTCOME.
THAT'S PROBABLY IN THE ARTICLE
BUT NOT HERE.
FOR THOSE WHO DON'T HAVE LIBRARY
ACCESS, THAT'S A BARRIER.
THAT WAS MY CONCERN ALONG WITH
JULIE'S ABOUT THE SAMPLE SIZE.
THEY DIDN'T PUT IN HERE WHAT THE
OUTCOME WAS.
WAS THERE IMPROVEMENT.
IT JUST SAID WE DID THIS.
>> YOUR CONCERN IS SPOT ON.
THE OUTCOME IS NOT IN THE PAPER.
THEY'RE MERELY SAYING THEY ED IT
TO AN AGE GROUP.
I AGREE WITH JULIE'S CONCERN.
>> I AGREE TO.
IT WAS A FEASIBILITY STUDY
ESSENTIALLY.
ECHOING DINA WE NEED TO BE
MINDFUL WHEN WE'RE NOMINATING
THESE ARTICLES AND A LIST OF
CRITERIA THAT WE ARE MADE TO
STICK TO WOULD BE HELPFUL TO ALL
OF US, I THINK.
>> Josh: ABSOLUTELY.
IN THE PAST WE HAD THE NEED TO
INCLUDE SAMPLE SIZE BUT PERHAPS
WE HAVEN'T DONE THAT ENOUGH.
WOULD HRSA LIKE TO MAKE A
STATEMENT.
IT'S A FEASIBILITY STUDY AND WE
DON'T HAVE A RULE BUT IT WILL BE
WITHDRAWN.
PAUL, IS IS IT ON THIS ONE?
DINA TO YOU AND THEN PAUL.
PAUL.
>> A COMMENT ON 35 AND QUESTION
ON 36.
35 HAS TWO APPROACHES AND IT'S
UNUSUAL BUT GOOD TO SEE DIRECT
COMPARISONS OF THERAPEUTIC
APPROACHES AND EXTREMELY RARE.
THESE STUDIES DON'T GET PROPOSED
OR DONE AND IT'S GREAT TO SEE
THIS PUBLISHED.
POTENTIALLY ONE OF THE THERAPIES
OR THE OTHER WAS BETTER FOR
CERTAIN SUB POPULATIONS IT'S
IMPORTANT FROM THE SOCIOLOGY OF
SCIENCE LET ALONE THE RESULTS.
>> Josh: BEFORE YOU MOVE ON TO
YOUR SECOND ONE, I WANT TO
EMPHASIZE THIS IS A TOPIC WHICH
HAS COME UP IN THE PAST.
I DON'T REMEMBER THIS IACC OR
THE PREVIOUS ONE BUT WE NEED TO
BE COMPARE ACROSS TREATMENTS TO
KNOW WHAT WORKS BETTER OR
EQUIVALENTLY OR BETTER SO
THANKS, PAUL, FOR BRINGING THAT
UP.
>> MY QUESTION ON 36 IS WHETHER
IT BELONGS IN THE NEXT CATEGORY
SERVICES AND SUPPORT.
IT DOES NOT REPORT ON THE
BENEFITS OR LACK OF BENEFIT OF
AN INTERVENTION BUT SEEMS TO
TALK ABOUT WHO GETS BEHAVIORAL
THERAPIES.
LIKE THE DELIVERY OF THAT
CONTRIBUTION.
>> Josh: I THINK THAT'S A GOOD
POINT AND CAN BE EASILY MOVED.
ANY COMMENTS FROM THIS SECTION?
OKAY, THANK YOU VERY MUCH.
>> THERE'S AN EXAMPLE IN MY
OPINION OF A STUDY WITH A MODEST
SAMPLE SIZE BUT NEED TO DIG IN
THE DETAILS AND REALIZE IT'S A
UNIQUE SUBGROUP WITH A
PARTICULAR CHALLENGE AND SO
HAVING 70 KIDS WITH 6,000 PLUS
AGGRESSIVE BEHAVIORS OBSERVED.
WHEN PEOPLE THINK ABOUT THESE
THINGS I DON'T WANT THEM TO JUST
THINK ABOUT THEM VERY
SIMPLISTICALLY WHAT THE NUMBER
OF PEOPLE ARE NECESSARILY
BECAUSE IT'S A REALLY IMPORTANT
STUDY THAT CAN'T BE DONE IN
THOUSANDS OF PEOPLE.
>> THIS IS A STUDY FOR THOSE
LOOKING AT THIS FOR NOW WHERE
THEY STUDIED INDIVIDUALS WITH
EXTREME AGGRESSIVE BEHAVIORS AND
WERE ABLE TO PREDICT THREE
MINUTES BEFORE THE AGGRESSIVE
BEHAVIOR BASED ON BIOMARKERS THE
INDIVIDUALS WEAR WHEN IT WOULD
OCCUR AND STUDYING INDIVIDUALS
WITH AGGRESSIVE BEHAVIORS IS
ANOTHER PRIORITY IDENTIFIED AND
WE HAD A PANEL ON IT AT THE
IACC.
VERY COMPELLING
>> THIS WAYS STUDY WHERE THEY
REALLY TRIED AND PEOPLE PEOPLE
WERE ABLE TO WEAR THE SENSOR.
IT DOESN'T MEAN IT'S NOT BAD AND
WAS EFFECTIVE RATHER THAN JUST
BEING A PRELIMINARY WHAT CAN
HAPPEN.
>> Josh: OKAY.
VERY MUCH.
WE'LL MOVE ON TO SERVICES AND
SUPPORT 17 TO 28.
A LOT OF NOMINATIONS HERE.
THE NOMINATION IS NUMBER 37 TO
23.
37 TO 47.
DINA GO AHEAD.
>> I APOLOGIZE IF I DIDN'T READ
IT THOROUGHLY ENOUGH BUT ITEM 38
IS LOOKING AT THE DISRUPTION,
THE PANDEMIC DISRUPTION PEOPLE
ARE EXPERIENCE IN GETTING
TREATMENT AND CARE AND MY
QUESTION IS THEY FOUND AUTISTIC
CHILDREN WERE MORE LIKELY TO
HAVE UNMET NEEDS.
MY QUESTION IS DID THEY COMPARE
THAT TO NON-DISABLED KIDS.
DIDN'T MOST OF US DEFER MENTAL
CARE OR DENTAL CARE BECAUSE OF
THE RISK FACTOR DURING THE
PANDEMIC AND I'M NOT SURE WHAT
WE'LL BE ABLE TO GET FROM IT.
>> Josh: WOULD ANYONE FROM NIH
OR SSA LIKE TO RESPOND?
>> ARTICLE 38.
>> Josh: MY READ OF IT IT IS
THEY COMPARED TWO NON-AUTISTIC
CHILDREN.
IT'S IN THE NIMH DESCRIPTION NOT
SURE IT'S IN THE SSA ONE.
>> THEY COMPARED NON-AUTISTIC
CHILDREN FROM THE ARTICLE?
>> Josh: THANK YOU, ALICE.
MORENIKE.
>> NO COMMENTS ON THIS SECTION
ON THE LAST SECTION, MORENIKE ON
DINA'S POINT.
THANK YOU FOR THAT POINT.
SOME OF US ARE LIMITED BY
PAYWALLS AT TIMES.
>> I'D LIKE TO POINT OUT THERE'S
A HYPERLINK THAT GOES TO THE
ABSTRACT ON PUB MED WHICH IS A
PUBLIC WEBSITE SO YOU CAN AT
LEAST GET THE ABSTRACT FROM
THERE BUT WHEN WE SEND IT OUT
FOR VOTING WE DO SEND THE PAPERS
THEMSELVES BUT WE CAN SEND IT TO
YOU ANYTIME YOU WANT IF YOU JUST
WRITE TO THE OFFICE WE HAVE ALL
OF THOSE BUT DON'T WANT TO FLOOD
YOUR INBOX WITH LOTS OF STUFF
BUT NEXT TIME WE'LL RIGHT STRACT
AND MAKE THAT THE HYPERLINK TO
MAKE IT MORE OBVIOUS.
>> ALSO A LOT OF THE PAPERS
FUNDED BY NIH HAVE A PMC I.D.
WHERE YOU CAN GET ACCESS TO THE
PAPER FOR FREE.
>> Josh: IF THERE'S NO OTHER
COMMENTS I WANT TO HIGHLIGHT ONE
THAT IS IN MY MIND RESPONSIVE TO
THE IACC INPUT AND THAT'S NUMBER
40, THE FINEBERG ET AL. PAPER.
IN FACT IT CAME UP TODAY.
THE IMPORTANCE OF FAMILY
NAVIGATORS.
THEY'RE OFTEN DESIRED AND OFTEN
ADVOCATED FOR AND NIMH ARE
TRYING TO DO THE EVIDENCE BASE
TO SUPPORT THAT AND THIS IS ONE
PAPER THAT ATTEMPTS TO DO THAT
WITH A DECENT SAMPLE SIZE OF 339
FAMILIES.
PAUL, DID YOU WANT TO COMMENT?
>> I HAVE TO EDUCATE MYSELF ON
THIS PAPER BECAUSE I LIKED VERY
MUCH THE 2021 SUMMARY ADVANCES
WINTER FROM THE SAME AUTHORS AND
SEEMS LIKE THE SAME PROJECT.
I WANT TO READ CAREFULLY WHAT'S
NEW IN THIS ONE.
>> Josh: THANKS, IF YOU COULD
LET US KNOW WE CAN PROMULGATE
THAT.
OKAY.
WE'LL MOVE IT ON THE NEXT
SECTION ON LIFE SPAN FROM PAGE
23 TO 32.
ARTICLES 48 TO 69.
ENE COMMENTS, QUESTIONS OR
POINTS ON THOSE ARTICLES ON LIFE
SPAN.
IT'S WONDERFUL TO SEE SO MANY OF
THAT.
GO AHEAD.
>> IT MAY SEEM SELF-SERVING TO
GIVE A SHUT OUT TO OUR
COLLEAGUES AT CDC AS MATT
MAENNER SAID TODAY.
NUMBER 53 WHICH THIS YEAR HAS
BEEN OUR FIRST TIME WE'VE BEEN
ABLE TO LOOK FORWARD IN THE
YOUTH AND YOUNG ADULTS NETWORK
AND THIS SPECIFICALLY LOOKS AT
EDUCATION AND TRANSITION
PLANNING FOR YOUTH AND YOUNG
ADULTS USING THE ADDM NETWORK
AND THINK IT'S A REALLY HELPFUL
CONTRIBUTION.
>> Josh: THANK YOU.
>> Josh: SCOTT.
>> COMMENTS AND QUESTIONS ABOUT
THE ONES I NOMINATED.
WHERE'S THE BOUNDARY BETWEEN
SUPPORT AND SERVICES AND LIFE
SPAN AND FOR EMPLOYMENT I WASN'T
SURE WHERE THE DIVIDING LINES
ARE ON THAT AND A WANTED TO
HIGHLIGHT A COUPLE OF THE ONES I
NOMINATED.
ONE WAS ON ONE OF MY MASKING
WHICH HAS COME UP A LOT RECENTLY
IN TERMS OF COMMITTEE'S FOCUSES
ON DISCUSSIONS RELATED TO
SOCIALIZATION AND COMMUNICATION
AND OTHER ASPECTS OF LIFE
EXPERIENCES AND THIS WAS QUITE
GROUNDBREAKING IN TERMS OF
LOOKING AT THE EMPLOYMENT
CONTEXT AS THE ONLY STUDY THAT'S
EVER DONE THAT AND HAS A PRETTY
SIGNIFICANT SAMPLE SIZE AND
LOOKED AT MASKING --
>> Josh: TELL US WHAT NUMBER
YOU'RE TALKING ABOUT.
>> THAT'S NUMBER 61, I BELIEVE.
IT'S THE ARTICLE BY I'M BAD WITH
NAMES BUT PRIQUE-HOBBS WORKPLACE
MASKING OF NEURO TYPICAL ADULTS
IN THE U.K.
THE SAMPLE SIZE WAS 472 FOLKS
THAT'S PRETTY SIGNIFICANT AND
285 AUTISTIC PEOPLE AND THE REST
WERE OTHER NEURODIVERGENT FOLKS
AND IT WAS VERY EYE OPENING FROM
THE QUALITATIVE RESEARCH AND THE
FINDINGS WERE HELPFUL IN
LEARNING ABOUT BARRIERS THAT
STEM FROM MASKING AND HOW IT
IMPACTS FOLKS' PHYSICAL AND
MENTAL HEALTH AND WELL BEING.
THE OTHER ARTICLE I WANTED TO
HIGHLIGHT TO WAS THE SOCIAL
ASPECT OF THINGS THE NUMBER 66
ON SCECHY, IT TALKS ABOUT THE
PERCEPTIONS IN THE WORKPLACE AND
THIS WAS ESPECIALLY MEANINGFUL
BECAUSE THERE'S A GROWING
LITERATURE ON THE DOUBLE EMPATHY
PROBLEM IN TERMS OF THE SOCIAL
ISSUES THAT STEM NOT JUST FROM
AUTISTIC PEOPLE'S DIFFICULTIES
BUT DIFFERENCES IN PROCESSING IN
AUTISTIC AND NON-AUTISTIC PEOPLE
AND THAT CREATES BARRIERS
EXPERIENCED BUT THE FACT ALSO
THAT IT HIGHLIGHTED HOW AUTISTIC
PEOPLE WERE OFTEN BETTER
SOMETIMES READING INTO CERTAIN
SITUATIONS AND THE STORY LINE
THEY HAD IS THE RESULT THAT WAS
FOUND IN THE STUDY THAT AUTISTIC
PEOPLE UNDERSTOOD THE
PERSPECTIVE BETTER OF THE
AUTISTIC PERSON IN THE WORKPLACE
THAN NON-AUTISTIC PEOPLE IN TERM
OF DIFFERENCES IN PERCEPTION AND
PROCESSING THAT SITUATION.
COMPARATIVELY AND GOOD EVIDENCE
BASE FOR ADVANCING THAT DOUBLE
EMPATHY PROBLEM IN REGARD TO THE
WORKPLACE AND OVER ALL.
>> Josh: THANKS, SCOTT.
IN ANSWER TO YOUR FIRST
QUESTION, THESE CATEGORIES ARE
MEANT TO BE APPLIED TO
CATEGORIES IN OUR STRATEGIC
PLAN.
SO I THINK THIS ONE FOR EXAMPLE
THE EMPATHY IS IN PARTICULAR TO
ADULTS WITH AUTISM AND COULD BE
AFFECTS IN CHILDREN BUT THAT'S
WHAT I'D LOOK AT IN LOOKING AT
WHAT AREA TO NOMINATE IT AND
WHICH CHAPTER OF OUR STRATEGIC
PLAN.
JULIE.
>> I HAVE TWO PAPERS I WANTED TO
SAY REALLY QUICK WORD ABOUT.
THE FIRST IS NUMBER 52 THE HAHN
PAPER AND I WAS INVOLVED IN THE
PAPER THOUGH AS A MINOR ROLE AND
THIS IS LOOKING AT DEVELOPMENT
AND CHANGE OVER TIME AMONG
ADOLESCENTS AND ADULTS USING
DATA COLLECTED OVER 22 YEARS.
A LONGITUDINAL STUDY OF 22
YEARS.
THE YOUNGEST PEOPLE WERE 10 AT
THE START OF THE STUDY AND THE
OLDEST WERE 69 AT THE END.
WE USED THE LONGITUDINAL DESIGN
TO CHARACTERIZE TRAJECTORIES
OVER 40, 50 YEARS OF THE LIVES
OF AUTISTIC ADULTS IN THE
SAMPLE.
WE FOUND THERE ARE WORSENING OF
DEVELOPMENT TRAJECTORIES ACROSS
AREAS WHEN WE GET TO MID LIFE
AND EARLY OLD AGE.
MOST OF WHAT WE KNOW ABOUT
DEVELOPMENT IN AUTISTIC ADULTS
IS FROM EARLY ADULTS AND EARLY
ADULTHOOD AND STARTING TO
UNDERSTAND HOW THINGS MAY CHANGE
WHEN PEOPLE MOVE INTO OLDER
ADULTHOOD AND WHAT THE NEEDS
THEY MAY HAVE FOR OLDER ADULTS
IS SOMETHING THEY DON'T KNOW
MUCH ABOUT AND START TO TELL US
A LITTLE BIT.
I WANTED TO MENTION THAT AND 68
IS A STUDY I NOMINATED BUT WAS
NOT INVOLVED IN.
THIS IS LOOKING AT EMPLOYMENT
OUTCOMES FOR AUTISTIC COLLEGE
GRADUATES AND THE REASON WHY I
THOUGHT THIS WAS IMPORTANT IS
BECAUSE I HEAR PEOPLE THROWING
AROUND STATISTICS ALL THE TIME
ABOUT THE RATES OF EMPLOYMENT
FOR COLLEGE GRADUATES AND I
DON'T KNOW OF A SINGLE STUDY
BEFORE THIS THAT HAS LOOKED AT
THAT IN A RIGOROUS BACK AND A
TRACED IT BACK TO A BLOG POST
PEOPLE ARE CITING SAYING 80% OF
AUTISTIC COLLEGE WATS ARE
UNEMPLOYED.
THIS STUDY HAS RIGOROUS
POPULATION-BASED DATA ON THE
RATE OF COLLEGE GRADUATES AND
UNEMPLOYMENT IS HIGH NOT 80% BUT
I THINK IT STARTS TO GIVE A FEEL
FOR WHAT THIS TRANSITION FROM
COLLEGE INTO EMPLOYMENT LOOKS
LIKE FOR THIS GROUP AND WHERE
THE NEEDS MIGHT BE.
AND MAYBE THERE'S ANOTHER STUDY
THAT'S LOOKED AT THIS BUT I
HAVEN'T COME ACROSS THIS SO I
THOUGHT IT WAS IMPORTANT.
>> Josh: THANK YOU, JULIE.
JEN.
>> MAY I MAKE A SUGGESTION WHEN
ORGANIZING THE PAPERS FOR US TO
DECIDE ON, CAN WE ORGANIZE IT BY
MAYBE AGE GROUP STARTING WITH
ADOLESCENTS AND TRANSITIONS AND
THEN ADULTS AND THEN MAYBE LIKE
THE STUDY JULIE MENTIONED WHERE
IT INCLUDES THE ENTIRE LIFE SPAN
ALMOST BECAUSE THAT WILL REALLY
HELP WITH DECIDING SELECTING THE
20 ARTICLES TO BE INCLUDED.
THANK YOU.
>> Josh: THANKS.
THAT'S A HELPFUL SUGGESTION.
DINA.
>> I WANT TO GO BACK TO JULIE
STUDY, 52 ABOUT THE CHANGES OVER
THE LIFE SPAN AND I JUST WANT TO
SAY FROM A POLICY STANDPOINT WE
NEED TO HOLD ON TO THIS KIND OF
AN ARTICLE BECAUSE IT REFLECTS
WHILE A PERSON IN EARLY
ADULTHOOD MAY HAVE HAD COGNITIVE
CAPACITY LEANING TOWARDS MORE
SELF SUFFICIENCY THAT CAN BE
HELD AGAINST THEM IN SEEKING
COMMUNITY-BASED INTERVENTIONS
LATER ON WHEN WE HIT THE DEEP
WELL IN THE BOTTOM.
I'M NOT ONE OF THOSE PEOPLE
HITTING THE DEEP WELL.
I'M 65 AND JUST FINISHED MY
Ph.D. BUT I'VE HAD REPORTING
FROM A LOT OF AUTISTIC ADULTS
THAT FIND BETWEEN BURNOUT AND
THEN CONSTANT ONSLAUGHT OF
DEMAND FOR SELF-SUFFICIENCY AND
INDEPENDENT LIVING SKILLS THEY
STRUGGLE TO SUSTAIN THAT.
I THINK FROM A POLICY STANDPOINT
WE NEED TO FIGURE OUT HOW TO
INCREASE SERVICES OR PROVIDER
SERVICE TO PEOPLE WHO MAY NOT
PREVIOUSLY HAVE NEEDED THEM.
I THINK THIS RESEARCH ARTICLE
SUPPORTS US ASKING FOR BETTER
AND ENHANCED OUTCOMES THERE.
>> Josh: THANK YOU.
MORENIKE.
>> SHE SAYS THEY WHOLEHEARTEDLY
AGREE WITH JENNY'S REMARK AND
WHAT DINA SAID IS TRUE OF MANY
INDIVIDUALS IN THE COMMUNITY.
>> Josh: THANK YOU.
>> ONE MORE QUICKIE, ON 56, THE
ARTICLE ABOUT SELF-HARM.
I WANT TO POINT OUT THE
INORDINATE RATE OF SELF-HARM
AROUND AUTISTIC FEMALES IN
STUDY.
I THINK IT'S THE RULE RATHER
THEN THE EXCEPTION.
AND DELINEATING THIS SELF-HARM
FROM SELF-INJURIOUS BEHAVIOR IS
NOT HELPFUL.
IF YOU'RE HURTING YOURSELF,
YOU'RE HURTING YOURSELF AND
DELINEATING IT OUT DON'T SEEM TO
BE PARTICULARLY HELPFUL OUT BUT
I APPRECIATE THAT AND 86% IS
INORDINATE.
>> Josh: SO YOU KNOW IT'S 83%
INCREASE LIKELIHOOD NOT 83
PARTLY OVER ALL LIKELIHOOD
THOUGH THEY'RE BIG NUMBERS.
PAUL.
>> LOOKING FOR GUIDANCE, DR.
DR. IOR -- DR. GORDON AND
DANIELS A LOT OF THESE ARE FROM
OUTSIDE THE UNITED STATES.
DO WE NEED TO TAKE THAT INTO
ACCOUNT AS WE THINK ABOUT THIS
OR NO, SIMPLY IGNORE THAT FACT?
>> Susan: IN TERMS OF OUR CHARGE
FROM CONGRESS IS TO IDENTIFY
SCIENTIFIC ADVANCES SO IT
DOESN'T SAY ONLY FROM THE UNITED
STATES OR FUNDED BY
U.S. FUNDERS.
I BELIEVE YOU CAN NOMINATE
ANYTHING YOU THINK IS AN
IMPORTANT ADVANCE YOU THINK
CONGRESS AND THE PUBLIC NEED TO
KNOW ABOUT.
>> IN ADDITION WE HAVE TO
RECOGNIZE THE DIFFERENCE IN THE
EDUCATIONAL SYSTEMS
INTERNATIONALLY AND REHAB
DOESN'T EXIST IN MANY OF THESE
COUNTRIES.
NOT GOING TO COLLEGE IS COMMON
IN THE U.K. AMONG THE REGULAR
POPULATION AS COMPARED TO THE
U.S. WHERE IT'S ALMOST EXPECTED.
AS WE WEIGH INTERNATIONAL
STUDIES TO INCLUDE I THINK WE
NEED TO WEIGH ALL THE EXTRA
FACTORS.
>> Josh: IF I CAN GENERALIZE
WHAT WE WOULD NOT WANT TO DO IS
VOTE FOR OR PUT FORTH
APPLICATIONS WE DONT THINK ARE
GENERALLY APPLICABLE WHETHER WE
TALK ABOUT THE GENERALITY ON THE
GLOBAL SCALE OR UNITED STATES.
AND THIS IS LONGITUDINAL STUDIES
AND TRACKING INDIVIDUALS OVER
TIME FOR AN EXTENDED PERIOD OF
TIME AND IT'S HARD TO DO AND
EXPENSIVE AND VALUABLE.
IT'S NOT THAT OTHER STUDIES
SHOULDN'T BE DONE IT'S THAT THIS
IS THE SORT OF STUDY WE NEED TO
CONTINUE TO INVEST IN THE
LONGITUDINAL DESIGN SO FOR THAT
REASON --
>> Josh: THANK YOU, WE'RE GOING
TO MOVE ON.
SCOTT, WE'RE WORRIED ABOUT TIME
SO PLEASE KEEP YOUR REMARKS
BRIEF BUT PLEASE GO AHEAD,
SCOTT.
>> BRIEFLY I WANTED TO NOTE I
SUGGEST WE KEEP THE FOCUS
ALLOWING FOR INTERNATIONAL
RESEARCH BECAUSE IF WE HAD TO
RESTRICT THE U.S.-FUNDED
RESEARCH IT WOULD HINDERED ON
THE LIFE SPAN AREA AND THE
RESEARCH ON EMPLOYMENT AND FOCUS
COMES FROM THE U.K. AND
AUSTRALIA AND OTHER COUNTRIES.
WE HAVE A GAP SOMETIMES IN SOME
OF THAT RESEARCH HERE IN THE
U.S.
I THINK IT WOULD HINDER US A LOT
IF WE WEREN'T ABLE TO HAVE THOSE
STUDIES
STUDIES FROM OUTSIDE THE U.S.
>> Josh: THANK YOU.
IASHA.
>> MY STUDIES ARE IN DENMARK AND
FUNDED BY NIH.
WE SHOULDN'T DISCOUNT STUDIES
JUST BECAUSE THEY'RE OUTSIDE THE
UNITED STATES AND I WANT TO PUT
IN A PLUG FOR THE BIOLOGY
STUDIES LAST YEAR BECAUSE LAST
YEAR Y'ALL KIND OF TOSSED THOSE
OUT AND THEY'RE IMPORTANT TO ME
IF YOU CONSIDER THE BIOLOGICAL
STUDIES THIS YEAR I'D APPRECIATE
IT.
THANK YOU.
>> Josh: THANK YOU.
ALL RIGHT.
WE ARE ON TO THE LAST SECTION
WHICH IS THE INFRASTRUCTURE AND
PREVALENCE PAGES 32 THROUGH THE
END.
NUMBER 70 THROUGH 76.
ANY COMMENTS POINTS TO BRING UP
IN THAT COLLECTION?
>> DINA.
I WANT TO TALK ABOUT ARTICLE 72.
I WANT TO POINT OUT ONE SPECIFIC
POINT IT SAYS THE LARGEST
INCREASE IN MEDICAID UPTAKE OVER
THE NINE YEARS WAS IN THE 25 TO
34-YEAR-OLD RANGE AND I THINK
THAT'S SIGNIFICANT BECAUSE
THAT'S THE AGE AS SOMEBODY WHO
HELPS PEOPLE GET ON SOCIAL
SECURITY DISABILITY AND WHEN
PARENTS SAY THIS ISN'T WORKING.
WE TRIED COLLEGE, DIDN'T WORK.
WE TRIED EMPLOYMENT, HASN'T
WORKED AND THAT'S THE AGE AROUND
25 IS THE POINT WHERE A LOT OF
PEOPLE HAVE TO DEFER TO SYSTEMS.
I THINK THAT'S A SIGNIFICANT
STATISTICAL PIECE OF EVIDENCE
THERE FOR US TO WEIGH IN REGARD
TO POLICY AND SAYSABILITY.
>> Josh: THANK YOU.
-- ACCESSIBILITY.
>> Josh: THANK YOU.
THIS IS THE INCREASE IN THE
PREVALENCE OF OPTIMISM IN
MEDICAID AND ENROLLED ADULTS.
I DON'T WANT TO BE POLIANAISH
BUT IT MAY BE WORKING IF MORE
ARE GETTING IN MEDICAID BUT IT'S
WORKING AND I DON'T SEE A STATE
BY STATE ANALYSIS.
WE HAVE OTHER RESEARCH NIMH HAS
DONE WHERE MEDICAID HAS BEEN
EXPANDED AND SEE BETTER
ACCESSIBILITY OF BETTER HEALTH
CARE AND DON'T KNOW IF THE
SUBANALYSES ARE IN THE PAPER.
JAELYNN.
>> THIS GOES TO WHAT YOU'RE
TALKING ABOUT, LONGITUDINAL
STUDIES AND THE PROFOUND AUTISM
IS BECOMING MORE IN THE
CONVERSATION BUT WE DON'T HAVE
ANY IDEA ABOUT WHAT HAPPENS WITH
CHILDREN AND FOR A LACK OF A
BETTER TERM, DO PEOPLE MATURE OR
GROW OUT OF PARTICULAR TYPES OF
BEHAVIORS AND IS THAT BECAUSE OF
PHYSICAL OR EMOTIONAL BRAIN
FUNCTIONS, WE DON'T KNOW.
IT'S HARD TO PROVIDE RESOURCES
UNLESS WE UNDERSTAND MORE ABOUT
IT.
THINGS LIKE THIS AND GOING INTO
LONGITUDINAL AREAS TO UNDERSTAND
WHAT THE IMPLICATIONS ARE FOR
THE INDIVIDUAL THROUGH THE LIFE
SPAN.
THANK YOU.
>> Josh: MORENIKE DO YOU HAVE
ANOTHER COMMENT?
>> THANK YOU FOR INSIGHTS AND
CONCUR WITH THE COMMENTS ABOUT
SELF-INJURY AND CLARIFIED HER
NAME.
>> Josh: ANY OTHER COMMENTS.
OKAY.
THANK YOU VERY MUCH FOR YOUR
CONSIDERED DISCUSSION OF THESE
NOMINATIONS AND AS SUSAN
MENTIONED, OUR NEXT TASK WILL BE
TO VOTE ON THEM TO PLEASE IF
YOU'VE BEEN TAKING NOTES JOT
THINGS DOWN NOW TO TAKE THE
COMMENTS IN CONSIDERATION.
I KNOW I'VE BEEN DOING IT.
AND WHEN YOU DO FILE YOUR VOTES
IN THE NEXT COUPLE OF WEEKS.
I'LL TURN IT BACK OVER TO SUSAN
TO CLOSE OUT THE COMMITTEE
BUSINESS SECTION AND TELL US
ABOUT LUNCH.
>> Susan: THANK YOU FOR A GREAT
DISCUSSION ON THE NOMINATIONS
AND WE WERE CAREFULLY LISTENING
TO FEEDBACK.
WE'LL DO OUR BEST TO TRY TO
INCORPORATE FEEDBACK WHERE
POSSIBLE AND MAKE THINGS AS
ACCESSIBLE AS THEY CAN BE.
NEXT IS LUNCH, EVERYONE'S
FAVORITE CISION SESSION.
WE HAVE THE PIKE AND ROSE ACROSS
THE STREET WHERE THERE'S
RESTAURANTS FOR THOSE WHO DON'T
HAVE A LUNCH AND IF YOU ORDERED
LUNCH IT'S BEING DELIVERED AND
YOU CAN PROBABLY GO OUT TO THE
FRONT AND THEY'LL BE ABLE TO
HELP YOU WITH THAT AND TOLD
WE'RE ALLOWED TO EAT IN HERE AND
IN EAT IN SOME OF THE ROOMS IN
THE CORRIDOR IF YOU'D LIKE TO
USE THAT.
ANYTHING ELSE I NEED TO MENTION?
>> AT 1:45 PLEASE BE BACK
PROMPTLY BECAUSE WE HAVE THREE
ORAL COMMENTS AND REVIEW OF THE
WRITTEN COMMENT AND THE WANT TO
HAVE DISCUSSION AND LOOK FORWARD
TO SEEING YOU BACK AT 1:45.
>> THANK YOU, EVERYBODY.
WE ARE NOW GOING TO PROCEED INTO
OUR ORAL PUBLIC COMMENT SESSION.
WE WILL HAVE THREE ORAL
COMMENTERS AS WELL AS A SUMMARY
OF THE WRITTEN AND COMMITTEE
DISCUSSIONS.
I WANT TO WELCOME OUR ORAL
COMMENTERS.
THEY'RE ALL ONLINE.
OKAY.
WE'RE GOING TO ASK EACH OF TO
YOU MAKE YOUR COMMENTS AND HOLD
YOUR COMMENTS TO THREE MINUTES
TO MAKE SURE EACH OF OUR
COMMENTERS HAVE TIME TO SPEAK
AND THEN WE HEAR OUR WRITTEN
COMMENTS AND WE HAVE TIME FOR
THE IACC TO DISCUSS.
WE HAVE NICOLE, ANTHONY AND
JORDYN.
>> I'M NICOLE CORRADO BASED IN
MONTREAL, QUÉBEC, CANADIAN AND I
WAS SO FRUSTRATED WITH THE
SYSTEMS WHEN I LIVED BACK IN
TORONTO THE JOINED THE TORONTO
POLICE SERVICES IMPLEMENTATION
TEAM AS A CIVILIAN ADVISER AND
NOW WORKING ON A STUDY REGARDING
BEHAVIOR WITH THE UNIVERSITY OF
WATER LOO.
I HOPE TO KEEP IN TOUCH WITH THE
IACC REGARDING AUTISM, JUSTICE
AND CASE MANAGEMENT SITUATIONS
LIKE AND MISSING PERSON CASES.
MOST RESEARCH ON MISSING PERSONS
REGARDS HYPERACTIVE CHILDREN
WANDERING OFF AND DOES NOT
INTERVIEW AUTISTIC PERSONS ON
THEIR PERSPECTIVES.
AS A RESULT, DATA IS LITTLE TO
NON-EXISTENT IN NEURAL DIVERSITY
AND RESEARCHING THIS AND WOULD
LIKE TO KEEP IN TOUCH WITH THE
DATA.
MY FRUSTRATION IS WAS IN 2006 IN
REGARDS TO MENTAL AGE THEORY.
IT MUST BE AVOIDED AT ALL COSTS
AND CAN BE WE PLACED WITH MORE
RESPECTFUL TERMS LIKE SUPPORT
NEEDS AND IVANOVA SMITH HAS A
GREAT YOUTUBE VIDEO ON THAT
SUBJECT.
NO ONE WANTS THEIR PROFILE
GOOGLED AND IT'S THE FIRST
NO-GENDER MODEL AND IT'S
IMPORTANT FOR PEOPLE WHO ONLY
HAVE FIRST NAMES LIKE SOME
INDIGENOUS PEOPLE ONLY HAVE
FIRST NAMES AND THE FIRST-NAME
NO-GENDER MODEL STARTED AFTER
MISSING TRANSGENDER PERSONS WERE
BEING MISIDENTIFIED AS THE WRONG
GENDER AND HAPPY TORONTO IS
MOVING FORWARD ON THIS.
PLEASE CONTACT AUTISTIC PERSONS
WHENEVER POSSIBLE WHEN
DEVELOPING POLICE AND PUBLIC
SAFETY POLICIES.
PEOPLE GO MISSING FOR MANY
REASONS.
SOME PEOPLE GO MISSING BECAUSE
OF ABUSE AT HOME AND ONE OF THE
THINGS I POINT TO IS THAT WOMEN
SHELTERS MUST BE MADE ANNIMAL
FRIENDLY AND MANY DON'T WANT TO
LEAVE THEIR SITUATION DUE TO
THEIR ANIMAL SAFETY.
THERE'S A PROJECT CALLED PURPOSE
LEASH PROJECT IN CANADA.
THEY HAVE SIMILAR THINGS IN THE
UNITED STATES.
MANY PARTS OF CANADA IN THE
UNITED STATES HAVE VULNERABLE
PERSONS REGISTRIES.
THERE'S DIFFERENT VIEWS ON SUCH
REGISTRIES.
I CHOOSE TO BE ONLY THEM BUT
SOME PEOPLE DON'T WANT TO BE.
NOT BEING ON A REGISTRY SHOULD
NOT CAUSE A MISSING PERSON TO BE
DEPRIORITIZED.
VULNERABLE PERSON REGISTRIES
MUST BE FULLY VOLUNTARY WHENEVER
POSSIBLE, FREE, EASY
SELF-REGISTRATION FOR PEOPLE
WITH A LOT OF AUTONOMY AND BE
SEPARATE FROM INCIDENT REPORT
SOFTWARE SO THEY NEED TO BE
WRITTEN IN PLAIN LANGUAGE.
>> Josh: MS. CORRADO, THANK YOU
BUT COULD YOU PLEASE WRAP UP.
>> I'D LIKE TO TALK TO YOU MORE
ON THIS SUBJECT.
>> Josh: WE APPRECIATE YOUR
INPUT.
>> YOU'RE WELCOME.
>> Josh: NEXT I'LL ASK ANTHONY
TUCCI TO UNMUTE.
THANK YOU VERY MUCH.
>> THANK YOU FOR THE OPPORTUNITY
TO PRESENT ORAL COMMENTS TODAY
ON THE PARENT OF A 20-YEAR-OLD
SON WHO HAS AUTISM AND IS A
NON-SPEAKER.
MY COMMENTS TODAY WILL FOCUS ON
THE APPROPRIATE INTERPLAY
BETWEEN COMMUNICATION SCIENCE
ADVOCACY AND THE ADVOCACY FOR
THE PROTECTION OF COMMUNICATION
RIGHTS.
THIS TOPIC HAS BECOME HIGHLY
RELEVANT DUE TO THE FACT
DISAGREEMENTS HAVE GIVEN
SCIENTIFIC ADVOCACY ATTACKING
INDIVIDUALS WITH AUTISM WHO USE
COMMUNICATION METHODS SOME CLAIM
TO LACK VALIDATION.
TO PROTECT THE HUMAN RIGHTS OF
INDIVIDUALS SCIENCE CAN PROPERLY
ENLIGHTEN THE FIELD OF AUTISM
WITHOUT COMPROMISING
COMMUNICATION RIGHTS.
IN EXPLORING THIS CHALLENGE I'LL
BEGIN BY HIGHLIGHTING THE
ESSENTIAL ROLE SCIENTIFIC
RESEARCH PLAYS IN COMMUNICATION
INTERVENTIONS.
COMMUNICATION IS A FUNDAMENTAL
FEATURE OF HUMANITY AND
EFFECTIVE APPROACH S HELP
INDIVIDUALS WITH SEVERE
COMMUNICATION CHALLENGE HOWEVER,
RESEARCH PROCESS IS SLOW, MANY
RESEARCH GAPS CONTINUE TO EXIST.
TO MEANINGFULLY ADDRESS THE
SHORT COMINGS THE COMMUNICATION
SCIENCE INDUSTRY SHOULD
COLLABORATE AND ENGAGE WITH
CROSS-DISCIPLINARY RESEARCH WITH
A BROAD AWAY OF MEDICAL
DISCIPLINE TO REPLACE RESEARCH
GAPS WITH GENUINE WISDOM FROM
THIS REQUIRED INTEGRATIVE
APPROACH.
RECENT NIDC CONFERENCE THAT
FOCUSSED ON EXPLORING RESEARCH
CONNECTIONS REPRESENTS A GREAT
STEP IN THIS DIRECTION.
NEXT I WANT TO SHOWCASE HOW
UNBOUNDED SCIENTIFIC ADVOCACY
HAS COMPROMISED AND IMPAIRED THE
HUMAN AND CIVIL RIGHTS OF
DEVELOPS WITH AUTISM.
CONVENTIONAL WISDOM ALLOWS US TO
REASONABLY CONCLUDE THE
APPLICATION OF SCIENCE AND THE
GREAT POTENTIAL FOR SCIENTIFIC
PROGRESS WILL LEAD TO
IMPROVEMENTS OF TO THE HUMAN
CONDITION.
HOWEVER, UNBOUNDED SCIENTIFIC
ADVOCACY LIMITS COMMUNICATION
RIGHTS.
DEPRIVES INDIVIDUALS OF THEIR
DIGNITY AND AUTONOMY AND
REPRESENTS A FORM OF SCIENCE AND
IT'S GREATEST DISCONTENTS.
A SELECT GROUP OF SO-CALLED
SCIENTIFIC ADVOCATES INTERFERE
IN THE LIVES OF CERTAIN
MINIMALLY VERBAL AND NON
SPEAKERS WHO HAVE A SELECTED
PREFERRED MODE OF COMMUNICATION
OPPONENTS DO NOT SUPPORT AND
CLAIM THESE METHODS DO NOT
QUALIFY TO BE PROTECTED AS HUMAN
RIGHTS BECAUSE ONE, THEY LACK
SUFFICIENT VALIDATION, TWO, ARE
PROP DEPENDENT AND WILL NOT
RESULT IN INDEPENDENT
COMMUNICATION.
HOWEVER, THESE REQUIREMENTS ARE
NOT SUPPORTED BY THE HUMAN
RIGHTS CONVENTION.
ARE DISCRIMINATORY AND VIOLATE
THE AMERICANS WITH DISABILITY
ACT.
SIMPLY STATE THE SCIENTIFIC
COMMUNITY IS NOT THE APPROPRIATE
GATE KEEPER OF HUMAN RIGHTS AND
DO NOT POSSESS THE KNOWLEDGE OR
LEGAL AUTHORITY TO DEFINE OR
REDEFINE THE PARAMETERS THAT
INDIVIDUALS WITH AUTISM MUST
SATISFY TO BE PERMITTED TO THEIR
COMMUNICATION RIGHTS.
A WORLD-EXPERT ON DISABILITY LAW
AND POLICY HAS OPINED THE HUMAN
CONVENTION ON THE RIGHTS OF
DISABILITY IS AIMED AT EXTENDING
PERSON WITH DISABILITIES
AVAILABLE OPTIONS NOT
CIRCUMSCRIBING THEM AND
DEMANDING RESPECT FOR THEIR
CHOICES NOT OVERRIDING THEM.
IN THE SAME SPIRIT THE ADA SERVE
TO ENSURE DISABLED INDIVIDUALS
ENJOY AN EFFECTIVE MODE OF
COMMUNICATION EQUAL TO THAT
ENJOYED BY NON-DISABLED
INDIVIDUALS AND SPECIFICALLY
REQUIRES PRIMARY CONSIDERATION
BE GIVEN TO A DISABLED
INDIVIDUAL'S COMMUNICATION
CHOICES AND PREFERENCES.
I OFFER THE FOLLOWING
RECOMMENDATIONS --
>> Josh: THANK YOU, EXCUSE ME,
MR. TUCCI, IF YOU COULD WRAP UP,
PLEASE.
>> YES, I WILL.
THE FORMATION OF WORKSHOPS AND
COMMITTEES TO FORCE LEGAL AND
SCIENTIFIC COMMUNITY TO WORK
TOGETHER.
I PROPOSE AN ADDITIONAL
REGULATORY GUIDANCE BY THE
JUSTICE DEPARTMENT THAT WOULD
COMPEL THE SCIENTIFIC COMMUNITY
INCLUDING SPEECH AND LANGUAGE
PROFESSIONALS TO PROPERLY AND
FULLY DISCLOSE ALL COMMUNICATION
RIGHTS.
THANK YOU FOR THE OPPORTUNITY TO
SPEAK AND AN APPRECIATE ALL YOUR
ADVOCACY ON BEHALF OF
INDIVIDUALS WITH AUTISM.
>> THANK YOU VERY MUCH FOR YOUR
COMMENTS.
>> Josh: FINALLY, I'LL ASK
JORDAN JOHNSON TO UNMUTE AND TO
PRESENT YOUR COMMENTS.
>> HI, MY NAME IS JORDYN JENSON
THE DIRECTOR FOR REGIONAL
DISABILITY JUSTICE AND IN
RESPONSE TO THE IACC'S 2021 TO
2023 STRATEGIC PLAN IN THE SCOPE
OF THIS MEETING WE SUBMITTED A
PUBLIC LETTER OF INTERACTIONS
WITH AUTISTIC INDIVIDUALS WITH
LAW ENFORCEMENT.
WE'D LIKE TO SHARE
EVIDENCE-BASED RESEARCH TO
INFORM A RESPONSIBLE AND
EQUITABLE APPROACH TO ADDRESSING
THE COMMITTEE'S PRIORITIES AT
THE INTERSECTION OF RACE AND
DISABILITY MOVING FORWARD.
DISABLED PEOPLE ESPECIALLY
AUTISTIC PEOPLE HAVE HIGHER
RATES OF VICTIMIZATION INCREASES
THE LIKELIHOOD THEY'LL INTERACT
WITH LAW ENFORCEMENT AND THE
CRIMINAL JUSTICE SYSTEM AND
AUTISTIC PEOPLE MAY DEMONSTRATE
NON-NORMATIVE BEHAVIORS THAT CAN
CAUSE POLICE TO PERCEIVE THE
SITUATION AS THREATENING AND MAY
USE EXCESSIVE FORCE.
IN QUOTING OUR FOUNDING FACULTY
DIRECTOR IN PARTICULARLY HER
PAPER ON DISABILITIES,
DISABILITY RELATED BEHAVIORS
CREATE PATHWAYS TO EXCESSIVE
FORCE BY POLICE.
THIS IS TRUE WHEN FOR INSTANCE
DISABILITY IS CODED AS
THREATENING AND POTENTIALLY
DANGEROUS NOT BECAUSE OF ANY
ACTUAL THREAT OR DANGER BUT
BECAUSE OFFICERS INTERPRET
PEOPLE WITH BEHAVIORS THAT DO
NOT ALIGN WITH NORMATIVE SOCIAL
NORMS AND BLACK AMERICANS ARE
FIVE TIMES AS LIKELY TO REPORT,
UNFAIRLY STOPPED AND POLICE
DISPROPORTIONATELY USE FORCE
AGAINST COMMUNITIES OF COLOR.
IT'S ALSO IMPORTANT TO TAKE INTO
CONSIDERATION THE SOCIAL AND
HISTORICAL CONTEXT WITH WHICH
THE DISCUSSION IS TAKING PLACE.
POLICE HAVE A LONG AND
COMPLICATED HISTORY WHEN IT
COMES TO INTERACTIONS BASED ON
RACE AND DISABILITY RESPECTIVELY
AND ESPECIALLY WHERE THEY
INTERCEPT.
THROUGHOUT HISTORY POLICE ARE
BEEN USED FOR SOCIAL CONTROL AND
SEE IT EXHIBITED TODAY AND NAD
YAT CONSIDERATION IS MADE TO THE
RELATIONAL POWER AND GOING BACK
TO INTERACTION BETWEEN POLICING
50% OF PEOPLE KILLED BY POLICE
OFFICERS ARE DISABLED.
AND WHEN PEOPLE OF COLOR
AUTISTIC PEOPLE AND THOSE AT THE
INTERSECTION ARE KILLED AT THE
HANDS OF POLICE, JURISDICTIONS
TEND TO RESPOND WITH MORE POLICE
TRAINING.
SIMILARLY IN THE CONVERSATIONS
AROUND AUTISM AND SAFETY AUTISM
SPECIFIC TRAINING FOR LAW
ENFORCEMENT IS SEEN AS THE KEY
SOLUTION.
DESPITE POLICE DEPARTMENTS
INCREASING DISABILITY IN AN
UNCONSCIOUS BIAS TRAINING PEOPLE
OF COLOR CONTINUE TO BE MET BY
POLICE WITH FORCE, COERCION AND
EVEN DEATH.
WE NEED IT SHIFT FROM ADVOCATING
FOR MORE POLICE TRAINING AND
INVESTING IN COMMUNITIES AND AM
PLY FIGE VOICES OF AUTISTIC
PEOPLE OF COLOR.
ADDITIONALLY LAW ENFORCEMENT
TRAINING CAN REINFORCE
STEREOTYPES AND HEIGHTEN
BIASSED.
IN COUNTRIES WHERE POLICE CAN BE
TRAUMATIZING WITH AUTISTIC
PEOPLE ESPECIALLY OF COLOR AND
WE URGE THE IACC TO PRIORITIZE
VOICES OF DISABLED PEOPLE OF
COLOR AND INVOLVE THEM MORE IN
THE MEETINGS AND DISCUSSIONS.
FOR ANY CONVERSATION HAPPENING
ABOUT AUTISTIC PEOPLE, THEY
SHOULD BE RECOGNIZED AS THE
EXPERTS ON ISSUES DIRECTLY
IMPACTING THEM.
WE ALSO RECOGNIZE THAT CONCERNS
FOR AUTISTIC PEOPLE'S SAFETY
SAFETY ARE REAL AND IMPORTANT
AND OTHER SOLUTIONS SHOULD BE
PRIORITIZED WITH POLICE TRAINING
CAUSING MORE HARM THAN GOOD.
>> Josh: CAN I ASK YOU TO WRAP
UP, PLEASE.
>> IT'S ESSENTIAL TO RECOGNIZE
THE HISTORY OF THE SYSTEMS AND
INSTEAD INVEST RESOURCES IN THE
COMMUNITIES AND ORGANIZATIONS
LED BY DISABLED PEOPLE OF COLOR.
WE RECOMMEND LEADING OUR WHOLE
LETTER.
THANK YOU.
>> Josh: THANK YOU VERY MUCH MS.
JENSEN AND ALL THREE OF OUR ORAL
COMMENTERS.
NOW OVER TO SUSAN FOR A
PRESENTATION OF THE WRITTEN
COMMENTS WHICH YOU EACH HAVE
RECEIVED IN THE FILE SENT IN
ADVANCE AND TO YOU.
>> Susan: I'LL HAVE DR. CELESTIN
SHARE THE WRITTEN COMMENTS WITH
YOU.
>> WE RECEIVED 13 WRITTEN PUBLIC
COMMENTS FOR THIS MEETING ON THE
FOLLOWING TOPICS.
THREE ON JUSTICE AND LAW
ENFORCEMENT, TWO ON RESEARCH
SERVICES AND SUPPORTS FOR ADULTS
WITH AUTISM, TWO COMMENTS ON
RESEARCH AND SERVICE NEEDS,
RESOURCES AND POLICY
IMPLICATIONS.
TWO COMMENTS ON ADDRESSING THE
NEEDS OF AUTISTIC INDIVIDUALS
WITH HIGH SUPPORT NEEDS ONE
COMMENT ON MENTAL HEALTH
RESEARCH SERVICES AND TREATMENT.
ONE COMMENT ON CONCERNS ABOUT
MEDICAL PRACTICES, ONE COMMENT
ABOUT INCREASING AUTISM
ACCEPTANCE AND REDUCING STIGMA
AND ONE COMMENT ON THE NEEDS OF
THE DIRECT SUPPORT PROFESSIONAL
WORKFORCE AGAIN ALL THE COMMENTS
CAN BE FOUND ON THE WEBSITE.
THANK YOU.
>> Josh: WE'RE NOW GOING TO OPEN
IT UP TO THE COMMITTEE TO
DISCUSS THE COMMENTS MADE.
MAY DISCUSS ANY OF THE WRITTEN
OR ORAL COMMENTS.
GO AHEAD, YETTA.
>> I'D LIKE TO THANK EVERYONE
WHO HAS PROVIDED ORAL AND
WRITTEN COMMENTS.
I WANT TO HIGHLIGHT FOR THE
GROUP ROSE BAUMEN'S COMMENT
WHERE THEY EXPRESS FAMILIES
NEEDED TO CALL 9-1-1 MORE THAN
ONCE DURING AN AGGRESSIVE
EPISODE AND OFTEN LAW
ENFORCEMENT IS UNEQUIPPED
CAUSING THEM TO BE DYSREGULATED.
I WANT TO HIGHLIGHT THAT COMMENT
BECAUSE IT'S BEING TALKED ABOUT
IN THE COMMUNITY, IN MY LOCAL
COMMUNITY AND THE COMMUNITY AT
LARGE.
SO I REALLY WANT TO SAY THAT
IT'S GOING TO TAKE EVERYONE
WORKING TOGETHER AND REALLY
EXCITE ABOUT THE PRESENTATION
LATER.
LAURIE REYES I KNOW ABOUT YOUR
WORK IN MONTGOMERY COUNTY BUT
IT'S GOING IT TAKE ALL OF US TO
WORK TOGETHER TO GET THIS
TOGETHER, RIGHT.
WE CAN'T HAVE FOLKS DYING
BECAUSE THEY HAVE BEHAVIORS.
IT SICKENS ME.
I'M EXCITED WE'RE HAVING THE
CONFERENCE TODAY.
>> Josh: THANK YOU, YETTA.
>> I WANT TO BRING UP NICOLE'S
COMMENTS WE NEED ANURSING --
NURSING LEVEL OF CARE.
>> Josh: CAN YOU SPELL OUT THE
ACRONYM.
>> HOME AND COMMUNITY BASED
SERVICES.
AGAIN, AUTISM IS A DYNAMIC
CONDITION AND THE NEEDS FOR
SUPPORT SERVICES EBB AND FLOW I
HAVE A COLLEAGUE WHO RECENTLY
RELOCATED FOR THE DREAM JOB OF A
LIFE TIME AND PACKING TO A NEW
STATE IS ON THE EDGE OF COSTING
HER HER JOB.
WE NEED TO SWITCH OUR IDEAS
ABOUT NURSING LEVEL OF CARE TO
EPISODIC NEEDS AND FROM A POLICY
STANDPOINT WE'RE GOING TO BE
GETTING MANY PEOPLE OFF
UNEMPLOYMENT AND SOCIAL SERVICES
IF WE CAN SWITCH TO EPISODIC
SUPPORT.
I'M GOING RELOCATE AND IT'S
GOING TO PUT ME IN DEBT AND I'M
LIVING ON $900 A MONTH WE CAN'T
KEEP PEOPLE OUT OF TOWNS OF
OPPORTUNITIES BECAUSE WE ASSUME
THEIR NEEDS ARE CONSTANT.
>> Josh: OTHER COMMENTS?
ALICIA.
>> I'LL LET SOMEBODY ON ZOOM
JUMP IN FIRST.
>> Josh: SAM, YOU'RE NEXT.
>> I WANTED TO TALK ABOUT THE
COMMENTER DISCUSSING
COMMUNICATION SUPPORTS BECAUSE
THIS IS SOMETHING THAT I HAVE
SEEN IN PRACTICE AND IT REALLY
CAN CAUSE ISSUES ON AN
INDIVIDUAL LEVEL SO THERE ARE
RESEARCHERS WITHOUT INTERACTING
WITH PEOPLE ENGAGE IN PUBLIC
DENUNCIATIONS AND HARASSMENT OF
PEOPLE AND I THINK IT'S ANYONE
APPROPRIATE AND BLUR THE
DISTINCTION BETWEEN WHAT I WOULD
SAY IS THE RESEARCH FOCUS, WHICH
IS REPLICABILITY ENSURING WE SEE
THINGS UP STALE AND GETTING AND
UNDERSTANDING THINGS AT THE
POPULATION LEVEL VERSUS
INDIVIDUALS WHO I THINK ARE MORE
WHEN YOU WANT TO LOOK AT WHETHER
AN INDIVIDUAL HAS VALID FORM OF
COMMUNICATING ARE DIFFERENT AND
IN THE COMMUNICATION SPHERE
GETTING A COALITION OF
RESEARCHERS AND STAKEHOLDERS
TOGETHER TO DETERMINE AND THE
INDIVIDUAL IS COMMUNICATING IN A
WAY THAT IS AU BE THE TICK.
-- AUTHENTIC I'VE SEEN PEOPLE
COMMUNICATING THAT IS
IDIOSYNCRATIC TO THEM AND IF WE
HAD A NORM WHERE WE'RE ONLY
RECOGNIZING COMMUNICATION THAT
LOOKS EXACTLY LIKE A FORM OF
COMMUNICATION THAT'S IN A
PEER-REVIEWED STUDY, WE'RE GOING
TO HAVE NEGATIVE OUTCOMES AND
GOING TO BE IGNORING
COMMUNICATION FROM INDIVIDUALS
WHO ARE COMMUNICATING.
GETTING A MORE NUANCE D LOOK INO
INDIVIDUAL COMMUNICATION AND
DEVELOPING GUIDELINES FOR
DETERMINING WHETHER AN
INDIVIDUAL IS SHOWING AUTHENTIC
COMMUNICATION WOULD BE A REALLY
IMPORTANT TOPIC I THINK.
>> Josh: I LIKE THE WAY YOU PUT
THAT.
THANK YOU, SAM.
THERE'S A CHALLENGE HERE AND
IT'S A CHALLENGE WHICH AFFECTS
EVEN THE WORK THAT WE DO AT THE
IACC.
THE CHALLENGES WE WANT TO
ADVOCATE FOR INVESTMENTS IN
SERVICES FOR INDIVIDUALS WITH
AUTISM THAT WORK FOR THEM, FOR
THEIR FAMILIES, FOR THEIR
COMMUNITIES.
YET, WE RECOGNIZE OF COURSE,
THERE'S NOT UNLIMITED RESOURCES
TO PROVIDE THOSE SERVICES.
IN FACT, WE NEED LOTS MORE
RESOURCES EVEN FOR THE SERVICES
THAT WE KNOW ABSOLUTELY WORK FOR
EVERYBODY OR AT LEAST A LOT OF
PEOPLE.
SO THERE IS, IF YOU WILL, A DE
FACTO COMPETITION FOR SCARCE
RESOURCES IN THIS AREA.
I THINK WHAT YOU THEREFORE RELY
ON IS SOME EVIDENCE THAT THINKS
IN ORDER FOR THE PUBLIC TO
INVEST IN THOSE SERVICES.
AT THE SAME TIME, SAM, YOU'RE
100% CORRECT IN THAT THIS IS
FACED ACROSS MEDICINE FOR
INDIVIDUALIZED PRECISION
MEDICINES.
WE NEED WAYS TO UNDERSTAND
WHETHER THINGS THAT WORK FOR A
SMALL GROUP OF INDIVIDUALS CAN
ACTUALLY WORK FOR THAT SMALL
GROUP OF INDIVIDUALS AND CAN
EVEN MORE IMPORTANTLY AS YOU
POINT OUT BE TAILORED TO
SPECIFIC THINGS FOR SPECIFIC
INDIVIDUAL AND THINGS TO COME
BACK TO AS AN IACC AND RECOGNIZE
INSTITUTIONS LIKE NIDCC THE
NATIONAL INSTITUTE OF DEFECTIVE
AND COMMUNICATION DISORDERS AND
FUNDS RESEARCH IN THAT AREA, FOR
THEM TO HOLD MEETINGS LIKE THE
ONE THAT WAS LAUDED IS A STEP IN
THE RIGHT DIRECTION.
I APPRECIATE THAT COMMENT, SAM.
>> SO IS MR. TUCCI STILL ON THE
LINE?
HIS COMMENT AND THEN ALSO HIS
STATEMENT REFERRED TO SOMETHING
CALLED SCIENTIFIC ADVOCACY.
SO I WANTED TO GET MAYBE A CLEAR
SENSE OF WHAT HE WAS TALKING
ABOUT IN THE SPIRIT OF OPEN
COMMUNICATION I WANTED TO GET
MORE OF A CLEAR DEFINITION.
WHAT'S HE MEAN BY SCIENTIFIC
ADVOCACY AND THERE SEEMS TO BE
SOMETHING MISSING.
>> Josh: MR. TUCCI CAN YOU
UNMUTE AND RESPOND?
HE'S NOT ON ANY MORE.
LET ME MAKE AN ATTEMPT UNLESS
SOMETHING AROUND THE TABLE WOULD
LIKE TO SUGGEST WHAT HE MIGHT
HAVE MEANT.
>> I'M PRETTY SURE I KNOW WHAT
HE'S TALKING ABOUT.
>> Josh: GO AHEAD, SAM.
>> IT'S A SPECIFIC -- I DON'T
WANT TO CALL ANYONE OUT BUT
THERE ARE SPECIFIC PEOPLE WHO DO
RESEARCH IN THIS FIELD WHO OF
THEN GO INTO POLICY ADVOCACY.
AND I APPRECIATED THE WAY
DR. GORDON WAS FREEZING THE
DISTINCTION BETWEEN DECIDING
WHAT WE WANT TO INVEST IN WITH
LIMITED DOLLARS FOR SUPPORT
VERSUS MAKING LET'S SAY CLINICAL
OR RIGHTS DECISIONS ABOUT AN
INDIVIDUAL PERSON WHO SOUNDS
SOMETHING THAT WORKS FOR THEM
AND I HAVE DEFINITELY SEEN
INDIVIDUAL RESEARCHERS WHO
BEYOND ADVOCACY AND INTO
SPECIFICALLY IF A PERSON WAS
TRYING TO GAIN REASONABLE
ACCOMMODATION AT SCHOOL OR AT
WORK OR EVEN IN A COURT CASE.
THEY WILL WILL INSERT THEMSELVES
AND ADVOCATE AGAINST THAT FORM
OF COMMUNICATION IN
UNDERSTANDING WHETHER THE FORM
OF COMMUNICATION IS RESEARCH
BASED.
I DO HAVE CONCERNS ABOUT THAT.
>> I DON'T WANT TO BELABOR THE
CONVERSATION BUT I BELIEVE THE
TERM SCIENTIFIC ADVOCACY IS
INAPPROPRIATE.
WE HAVE SCIENTIFIC EVIDENCE AND
THEN EVIDENCE USED FOR ADVOCACY
BUT I'M A LITTLE CONFUSED ABOUT
THE TERM SCIENTIFIC ADVOCACY SO
I JUST WANT TO PUT THAT ON THE
RECORD.
>> Josh: THANK YOU, ALICIA.
YOU HAVE HAND UP.
MR. TUCCI --
>> SURE.
IT'D BE MY PLEASURE.
BASICALLY THE TERM SCIENTIFIC
ADVOCACY I'M REFERRING TO IS A
CONCEPT THAT INDIVIDUALS WHO ARE
TAKING THE POSITION THAT THEY
ARE ADHERING TO THE SCIENTIFIC
MODEL.
THE EVIDENCE-BASED PRACTICE
MODEL AND THEY'RE GOING TO SAY
WE'RE PROMOTING WHEN
INTERVENTIONS THAT MEET THE BEST
EVIDENCE RULE.
AND INDIVIDUALS THAT ARE GOING
TO ADVANCE THAT CLAIM WILL
ULTIMATELY GO BEYOND THE SCOPE
OF JUST BEING LIMITED TO HAVING
A TECHNIQUE WE BELIEVE DOESN'T
MEET AND AS A RESULT OF THAT
WE'RE GOING ONE STEP FURTHER
SAYING IF YOU DON'T MEET WHAT WE
CONSIDER TO BE BEST EVIDENCE,
YOU DON'T QUALIFY FOR CERTAIN
COMMUNICATION RIGHTS.
SO WHAT I'M SUGGESTING IS THAT
THESE INDIVIDUALS AND THEY'RE
BASICALLY FAILING TO SEE THE
DISTINCTION BETWEEN WHAT DOES IT
MEAN IF OUR ARGUMENT IS THERE'S
NO SCIENTIFIC SUPPORT FOR THIS
INTERVENTION.
WHEREBY THE INDIVIDUALS USING
FOR EXAMPLE IN THIS CASE A
METHOD OF COMMUNICATION THAT HAS
WORKED FOR THEM.
AND THEY HAVE DISAGREEMENTS
AMONGST EXPERTS.
SOME EXPERTS SAY THERE IS
SCIENCE SUPPORTING THE
INTERVENTION, OTHER EXPERTS SAY
THERE AREN'T --
>> I APPRECIATE IT.
>> JOSH: WE HAVE ONE COMMENT.
NICK NICOLE'S COMMENTS ON THE
NEED FOR PROFESSIONAL WORKFORCE
AND HIGHLIGHTED A CANADA TO
EMPLOY NEURODIVERGENT PEOPLE IN
MEDICAL SIMULATION TO HELP
EDUCATE MEDICAL STUDENTS.
I WONDER IF NIH AND SISTER
AGENCIES COULD HELP WITH
SUPPORTING PRACTICES LIKE THIS
FOR MEDICAL SCHOOLS HERE IN THE
U.S. GIVEN A LOT OF MEDICAL
STUDENTS DON'T RECEIVE A LOT OF
EDUCATION ABOUT NEURODIVERSE
PEOPLE INCLUDING AUTISTIC PEOPLE
AND HAS COME UP AT PRIOR IACC
MEETINGS AND GLAD IT WAS
HIGHLIGHTED IN THE COMMENT.
>> Josh: THANK YOU, SCOTT.
WE'RE GOING TO NOW MOVE INTO THE
MAIN EVENT FOR THE AFTERNOON
WHICH IS THE JUSTICE AND LAW
ENFORCEMENT PRESENTATIONS AND
PANEL DISCUSSION.
THIS HAS COME UP ENUMERABLE
TIMES AND ALL OF US IN THE
AUTISM COMMUNITY AND WE'VE
FOCUSSED IN WANDERING BRINGING
THE ROLE OF LAW ENFORCEMENT AND
ENSURING THE SAFETY OF
INDIVIDU
INDIVIDUALS IN THOSE SITUATIONS
AND WE'LL HEAR ABOUT A BROAD
ARRANGE OF JUSTICE ISSUES
INCLUDING THE INTERACTIONS OF
AUTISTIC INDIVIDUALS WITH THE
LAW ENFORCEMENT AND JUDICIAL
SYSTEM AND PROGRAMS EMERGING IN
THIS SPACE TO DEVELOP BEST
PRACTICES THAT WILL INCREASE
SAFETY AND PROTECT THE RIGHTS OF
PEOPLE WITH AUTISM AND OTHER
INTELLECTUAL AND DEVELOPMENT
DISABILITIES.
TODAY'S PRESENTATIONS WILL
HIGHLIGHT THE IMPORTANT WORK
GOVERNMENTS AND OTHER
ORGANIZATIONS ARE DOING TO
ADDRESS SOME OF THESE ISSUES AND
RAISE I'M SURE MANY INTERESTING
AREAS FOR DISCUSSION.
WE HAVE TWO SEPARATE PARTS TO
THE AFTERNOON'S EVENTS.
FIRST A SERIES OF PRESENTATIONS
FROM THE CURRENT PROGRAMS TO
ADDRESS JUSTICE AND LAW
ENFORCEMENT ISSUES FOR
INDIVIDUALS ON THE SPECTRUM AND
THEN HEAR A PANEL THAT INCLUDES
SEVERAL PEOPLE SHARING THEIR
LIVE AND PROFESSIONAL
EXPERIENCES IN THIS AREA.
MR. GORDAN WILL PRESENT A BRIEF
OVERVIEW AND DISCUSS HIS WORK IN
THE DEPARTMENT OF JUS IT'S AS
ASSISTANT UNIT ATTORNEY AND
CIVIL RIGHTS ENFORCEMENT
COORDINATOR FOR THE
U.S. DEPARTMENT OF JUSTICE.
>> I'LL START OFF HERE WITH A
LITTLE INTRODUCTION.
ARE FOLKS ABLE TO HEAR ME OKAY?
>> IS THIS BETTER?
PERFECT.
AS WE HEARD FROM FOLKS HERE,
INDIVIDUALS WITH AUTISM LIKE ANY
OTHER PERSON IN SOCIETY ARE
LIKELY TO ENCOUNTER LAW
ENFORCEMENT OFFICERS AT SOME
POINT.
SOMETIMES AS A CRIME VICTIM
SUSPECT OR WITNESS.
UNFORTUNATELY, BECAUSE OF THE
LACK OF UNDERSTANDING OF AUTISM
IN THE LAW ENFORCEMENT
COMMUNITY, SOMETIMES THESE
INTERACTIONS END BADLY.
AND WITHOUT PROPER TRAINING,
CRIMINAL JUSTICE PERSONNEL MAY
MISINTERPRET THE CONDUCT OF
INDIVIDUALS WITH AUTISM AS
INTENTIONAL DISRESPECT OR
DISOBEDIENCE WHICH MAY LEAD TO
UNNECESSARY CRIMINAL JUSTICE
INVOLVEMENT.
A TOOL IS PROVIDING LAW
ENFORCEMENT WITH TRAINING TO
INCREASE CULTURAL COMPETENCY AND
HUMILITY FOR PEOPLE WITH AUTISM.
THIS AFTERNOON YOU WILL HEAR
FROM PEOPLE WHO HAVE WORKED WITH
LAW ENFORCEMENT AGENCIES TO
CULTURAL COMPETENCY AND CULTURAL
HUMILITY FOR PEOPLE WITH
DEVELOPMENT AND INTELLECTUAL
DISABILITIES INCLUDING AUTISM.
MY PRESENTATION WITH THE
AMERICANS WITH DISABILITY ACT IS
A PORTION AND WOULD PROBABLY
TAKE A FULL DAY IF NOT A FULL
SEMESTER TO COVER HOW THE
AMERICANS WITH DISABILITIES ACT
INTERSECTS WITH LAW ENFORCEMENT.
IT AFFORDS PROTECTION BASED ON
SEX, RACE, RELIGION OR NATIONAL
ORIGIN.
IMPORTANT RESOURCE FOR EVERYBODY
IS ADA.gov.
IT'S THE DEPARTMENT OF JUSTICE'S
WEBSITE AND IT IS A HUGE
RESOURCE OF INFORMATION.
YOU CAN FIND THE STATUTORY
LANGUAGE AND TECHNICAL
ASSISTANCE AND SETTLEMENT
AGREEMENTS AND BRIEFS AND
COMPLAINTS FILED.
MANY ARE FAMILIAR WITH THE
ARCHIVED VERSION.
I ENJOY USING THAT VERSION OVER
THE NEW VERSION FIND THAT AT
ARCHIVE ADA.gov.
THERE'S TWO TECHNICAL ASSISTANCE
PUBLICATIONS REALLY IMPORTANT.
WHEN YOU SEE THE BLUE HYPERTEXT
LINK, WHEN YOU GET THE
PRESENTATION LATER YOU CAN CLICK
ON THAT AND IT WILL GO RIGHT TO
THE DOJ TECHNICAL ASSISTANCE
PUBLICATION ONE IS COMMONLY
ASKED QUESTIONS AND EXAMPLES AND
RESOURCES TO SUPPORT CRIMINAL
JUSTICE ENTITIES IN COMPLIANCE
WITH TITLE II OF THE ADA.
IT COVERS COURTS, COMMUNITY
CORRECTIONS, COMMUNITY JUSTICE,
PROSECUTORS, STATE AND SOCIAL
SERVICE AGENCIES THAT ASSIST AND
WE CALL THEM CRIMINAL JUSTICE
BOARDS.
IT INCLUDES THE OPERATION OF
9-1-1 AND NOW 9-8-8 EMERGENCY
CENTERS.
LAW ENFORCEMENT ON THE STREET
INTERACTIONS INCLUDING TAKING
AND RESPONDING TO COMPLAINTS.
INTERVIEWS AND QUESTIONING
VICTIMS, WITNESSES OR SUSPECTS
AND DIVERSION PROGRAMS
ARRESTING, SETTING CONDITIONS
FOR PROBATION AND PAROLE,
PROVIDING MEDICAL SERVICES AND
ENFORCING THE LAW.
ALL ASPECTS OF THE CRIMINAL
JUSTICE SYSTEM ARE COVERED.
WHAT ARE EXAMPLES OF WHAT THE
ADA REQUIRES?
IF A LAW ENFORCEMENT AGENCY
FAILS TO MAKE PRACTICES OR
PROCEDU
PROCEDURES THAT'S A POSSIBLE
VIOLATION AND FAILING TO CONDUCT
INDIVIDUALIZED ASSESSMENT TO
ENSURE REQUESTING ACCESS,
FAILING TO COMMUNICATE IN A WAY
AN INDIVIDUAL WITH A DISABILITY
UNDERSTAND AND EFFECTIVE
COMMUNICATION SAY CORE PRINCIPLE
OF THE ADA.
SCREENING OUT PEOPLE WITH
DISABILITIES FROM PROGRAMS.
AAL FACILITY THAT SAYS YOU HAVE
AUTISM.
YOU CAN'T PARTICIPATE IN AN
EARLY RELEASE PROGRAM.
THAT'S A POTENTIAL VIOLATION.
REALLY IMPORTANT UNDER THE ADA,
ONE SIZE SOLUTIONS DO NOT FIT
ALL.
AND AS YOU CAN SEE FROM THE
ILLUSTRATION, NOT EVERYONE IS
GOING TO FIT ON THE SAME SIZED
BICYCLE.
IT'S REALLY IMPORTANT WE AIM NOT
FOR EQUALITY THE SAME SIZE
BICYCLE BUT EQUITY.
THIS IS A CORE PRINCIPLE UNDER
THE ADA.
YOU CAN SEE IN THE FIRST PANEL
WE HAVE EQUALITY.
NO CURB CUT, NO AUDIO FOR WHAT
THE TRAFFIC SIGNALS ARE
ANNOUNCING, AND THAT IS NOT
EQUITY.
IF YOU LOOK AT THE SECOND PANEL
YOU'LL SEE KWLT.
EVERYONE GETS WHAT THEY THESE
UNDERSTANDING THE BARRIERS,
CIRCUMSTANCES AND CONDITIONS.
IT'S THE SAME THING WHEN WE'RE
TALKING ABOUT AUTISM OR OTHER
INTELLECTUAL AND DEVELOPMENT
DISABILITIES.
YOU HAVE TO AIM FOR KWLT NOT
JUST EQUALITY.
AND THE ADA PROHIBITS
DISCRIMINATION NOT JUST BASED ON
AFFIRMATIVE ANIMUS BUT
THOUGHTLESSNESS, APATHY AND
STEREOTYPES ABOUT PEOPLE WITH
DISABILITIES.
EXAMPLES OF FAILURES TO MODIFY
PRACTICE OR PROCEDURES, REALLY
IMPORTANT.
FAILING TO DEPLOY ALTERNATE
RESPONSES FOR CALLS AND FAILING
TO COORDINATE WITH COMMUNITY
MENTAL HEALTH AGENCIES.
IF YOU LOOK AT THE DEPARTMENT OF
JUSTICE' LETTER OF FINDING AND
KENTUCKY INVOLVING BRIONA TAYLOR
THERE'S A NINE-PAGE DISCUSSION
OF AMERICANS WITH DISABILITY ACT
AND FAILING TO MODIFY THEIR
PRACTICES.
DENY A REQUEST FOR SUPPORT
PERSON TO ASSIST AN INDIVIDUAL
WITH INTELLECTUAL OR DEVELOPMENT
DISABILITIES DURING AN
INTERROGATION AND PEOPLE WITH
AUTISM ARE MORE LIKELY TO BE
AGREEABLE AND GET THEM IN
TROUBLE INCLUDING FALSE
CONCEPTIONS.
A GED PROGRAM THAT FAILS TO
MODIFY THE PROGRAM FOR PEOPLE
WITH DISABILITIES IMPORTANT IN
CORRECTIONS.
EVERYTHING NEEDS TO BE MODIFIED
TO ENSURE PEOPLE WITH
DISABILITIES GET EQUITY.
SO IN THE DEPARTMENT OF JUSTICE'
LETTER OF FINDING IT EX PLAINS
THE LOUISVILLE METRO COULD
MODIFY POLICIES AND PROCEDURES
IN TRAINING PROGRAM AND DEPLOY
COMMUNITY-BASED PROVIDER
OPERATOR MOBILE TEAMS TO
BEHAVIORAL HEALTH CALLS BOTH
INITIAL CALL FOR SERVICE AND EP
EN COULDN'TERS WHEN AN OFFICER
DETERMINE A POLICE RESPONSE NOT
NECESSARY AND DOJ POINTED OUT
WHEN SOMEONE IS IN CARDIAC
ARREST THEY WOULD CALLED OUT FOR
HELP AND BEHAVIORAL HEALTH FOCUS
RESPONSE SHOULD BE AVAILABLE TO
PEOPLE EXPERIENCING BEHAVIORAL
HEALTH ISSUES INSTEAD OF
TRADITIONAL LAW ENFORCEMENT
RESPONSE WHEN APPROPRIATE.
AGAIN, THIS IS FROM THE
DEPARTMENT'S LETTER OF FINDING.
SYSTEMIC CONSIDERATIONS ARE
REALLY IMPORTANT IN THIS AREA
AND THAT'S THE PLAN AHEAD STUFF.
THE PROACTIVE STUFF AND THAT
MEANS DOING THINGS LIKE TRAINING
CRIMINAL JUSTICE PERSONNEL,
CONDUCTING REVIEWS OF POLICIES
AND PROCEDURES, VERY IMPORTANT
FOR LAW ENFORCEMENT TO LOOK AT
THEIR POLICIES AND PROCEDURES
AND IACP WILL BE ON THE PANEL
AND TALK ABOUT MODEL POLICIES
THEY HAVE AND COLLABORATING WITH
MENTAL HEALTH SERVICES AND
THAT'S A TOPIC DISCUSSED IN THE
LOUISVILLE PROGRAM AND YOU'RE
GOING TO ALSO SEE WHAT THE ARC
OF NORTHERN VIRGINIA AND LAUDER
ARE DOING AND WE'LL TALK ABOUT
THE PROGRAM GENERALLY AS WELL.
WHAT ARE EXAMPLES HOW TO ENSURE
ACCESSIBILITY?
TRAIN LAW ENFORCEMENT OFFICERS
WHEN RESPONDING TO A PERSON IN
MENTAL HEALTH CRISIS WHO DOES
NOT POSE A SIGNIFICANT SAFETY
THREAT THEY SHOULD CONSIDER
PERFORMING TIME AND SPACE TO
CALM THE SITUATION
DE-ESCALATION.
THE COURT REQUIRING COURT STAFF
TO REASONABLE MODIFICATION TO
ALLOW QUALIFIED INDIVIDUALS WITH
AUTISM TO PARTICIPATE IN
DIVERSION PROGRAMS AND SPECIALTY
COURTS.
IN CORRECTIONS, IMPLEMENT POLICY
ENCOURAGE CORRECTION STAFF TO
SEEK ASSISTANCE FROM CRISIS
INTERVENTION TEAMS AND MENTAL
HEALTH PROFESSIONALS WHEN
INTERACTING WITH INMATES THAT
EXHIBIT NEGATIVE BEHAVIORS AND
TRAIN STAFF IN THE USE OF
DE-ESCALATION TECHNIQUES AND
FORGO TREATMENT AND PROVIDE
TREATMENT WHERE APPARENT A
PRISONER'S BEHAVIOR WAS RELEVANT
TO A DISABILITY.
INCREASED COLLABORATION AND
IMPROVED RESOURCE COLLABORATION
BETWEEN DISABILITY SERVICE
SYSTEMS AND AGENCIES CAN HELP
REDUCE DISPARITIES WITH PEOPLE
WHO HAVE DISABILITIES.
AND ACTIONS REQUIRED BY THE ADA
ARE NOT SPECIAL PRIVILEGE.
IT'S A MYTH A LOT OF PEOPLE
BELIEVE INSTEAD MEASURES TO
ENSURE EQUITY AND ACCESSIBILITY.
IT'S IMPORTANT TO RECOGNIZE
PEOPLE WITH DISABILITY ARE
LIKELY TO BE VICTIM OF CRIME
LIKE RAPE AND SEXUAL ASSAULT.
THREE TIMES MORE LIKELY.
IT'S IMPORTANT LAW ENFORCEMENT
TAKES SERIOUSLY THE COMPLAINTS
OF PEOPLE WITH IDD INCLUDING
AUTISM.
THOSE WITH COGNITIVE
DISABILITIES HAVE THE HIGHEST
RATE OF TOTAL VICTIMIZATION
AMONG RATES MEASURED.
21% OF UNREPORTED VIOLENCE
AGAINST PERSONS WITH
DISABILITIES WAS NOT REPORTED
BECAUSE THE VICTIM DID NOT THINK
THE POLICE WOULD HELP.
THERE'S IT THERE'S A THOUGHT
PROCESS WE COULD WORK ON.
COMMUNICATION HAS BEEN IMPORTANT
FOR THE EASTERN DISTRICT OF
VIRGINIA.
AND WE HAVE WORKED WITH THE ARC
OF LAUDEN'S DISABILITY COALITION
AND SEE THE MEETING WE HELD AND
THE SHERIFF'S DEPARTMENT IS
THERE AND FOLKS FROM THE PUBLIC
DEFENDER'S OFFICE WAS THERE AND
COMMONWEALTH ATTORNEYS OFFICE IS
NOW ON THIS AS WELL AND MANY
STAFF MEMBERS FROM THE ARC OF
LO
LOUDON -- LOUDOUN AND I'VE
GIVEN PRESENTATIONS TO THE
VIRGINIA DEPARTMENT OF
CORRECTI
CORRECTIONS THEY HAVE AN ANNUAL
ADA COORDINATEERS TRAINING AND
FOR THE COMMONWEALTH OF VIRGINIA
AND THE PAST OCTOBER AT THE
INTERNATIONAL ASSOCIATION OF
POLICE I GAVE MY LONG FORM
PRESENTATION ADA AND LAW
ENFORCEMENT.
WHY IS THIS IMPORTANT?
WE'RE OUT IN THE COMMUNITY
DISCUSSING THESE ISSUES.
IT'S NOT JUST AN ACADEMIC
DISCUSSION OR FOR THIS
PARTICULAR AGENCY.
IT'S IMPORTANT FOR THE PEOPLE
WHERE THE RUBBER MEETS THE ROAD
TO HERE THIS AND IMPORTANT FOR
US ALL TO FIND WAYS TO
COLLABORATE AND IT'S AMAZING THE
RELATIONSHIPS WE CAN BUILD AND
I'VE SEEN LEEN AND THE ARC OF
THE UNITED STATES BUILD IN
COMMUNITIES.
IT'S REALLY IMPORTANT AND A
SPOKE TO THE VIRGINIA
ASSOCIATION AND 86 OF THE 136
SHERIFF'S DEPARTMENTS IN DO ON
THE STREET ENFORCEMENT AND ALL
OR SOME HAVE SOME INTERACTION
WITH CORRECTIONS.
THEY OPERATE IT OR ARE PARTNERS
SO REALLY IMPORTANT.
I ALSO WANT TO SHOW YOU THIS IS
A FLYER THE ARC OF NORTHERN
VIRGINIA PUT OUT FOR ONE OF
THEIR PROGRAMS WHERE THEY DO
MOCK TRAFFIC STOPS AND THE
POLICE GET TOGETHER WITH PEOPLE
WITHIN INTELLECTUAL AND
DEVELOPMENT DISABILITIES AND
SOMETIMES THIS IS THE FIRST
OPPORTUNITY FOR PEOPLE WITH
INTELLECTUAL AND DEVELOPMENT
DISABILITIES TO BE IN A
NON-THREAT JING SITUATION WITH
POLICE DEPARTMENTS.
IT'S ALSO AN OPPORTUNITY FOR THE
POLICE DEPARTMENTS TO GET TO
KNOW PEOPLE IN THE COMMUNITY AND
IT'S REALLY IMPORTANT AND IT'S A
GREAT PROGRAM AND I KNOW
MONTGOMERY PROGRAM WILL TALK
ABOUT WHAT THEY DO IN A SIMILAR
VEIN.
I WELCOME HEARING FROM FOLKS.
PLEASE FEEL FREE TO CONTACT ME.
THIS IS A VERY IMPORTANT TOPIC
FOR ME.
I HAVE A SISTER WITH
DISABILITIES AND IT'S BEEN A
LIFE LONG CONCERN AND I'VE BEEN
A LIFE LONG ADVOCATE IN THIS
AREA.
THANK YOU AND I KNOW WE HAVE
SOME OTHER SPEAKERS AS WELL.
>> Josh: THANK YOU VERY MUCH.
WE'LL MOVE LOOK AND TAKE
QUESTIONS AT THE END.
SUSAN, DID YOU WANT TO MAKE A
COMMENT FIRST?
>> Susan: WE WANTED TO MAKE A
COMMENT THAT WE ARE TALKING
ABOUT POLICE LAW ENFORCEMENT
SITUATIONS AND IF ANYONE FEELS
VERY SENSITIVE ABOUT THAT WE DO
HAVE A SENSORY ROOM.
CAN STEP AWAY OR FEEL FREE TO
STEP AWAY FROM THE MEETING IF
YOU NEED A BREAK BUT WE WILL BE
TALKING ABOUT POTENTIALLY ABOUT
SENSITIVE ISSUES.
THANK YOU.
>> OUR NEXT SPEAKER IS MARLEAN
PONDER THE AUTISM SOCIETY OF
AMERICA AND TALK ABOUT ADVOCACY
AND JUSTICE OF WHICH SHE IS THE
DIRECTOR.
>> THANK YOU, HELLO, EVERYBODY.
CARLEAN PONDER AGAIN.
THE AUTISM JUSTICE CENTER IS A
BRAND NEW INITIATIVE FOR THE
AUTISM SOCIETY AND IT'S FUNNY
BECAUSE WE NAMED OUR NAME TO THE
AUTISM JUSTICE CENTER BECAUSE
PEOPLE FELT THAT WAS DIRECTLY TO
THE POINT OF WHAT WE'RE DOING.
A LITTLE BIT ABOUT MY
BACKGROUND.
I'M AN ATTORNEY.
I DID REGULATORY WORK WITH THE
SOCIAL SECURITY ADMINISTRATION.
I'VE DONE FEDERAL POLICY WORK
WITH MY GOOD COLLEAGUE AND
FRIEND LEANN AND WORK AROUND
MENTAL HEALTH DISABILITIES AND
POLICING IN THE LOCAL COMMUNITY.
THE TOPIC OF CRISIS RESPONSE AND
HOW WE RESPOND TO PEOPLE IN
MENTAL HEALTH CRISES IS NEAR AND
DEAR.
THE AUTISM JUSTICE CENTER WHICH
IS A BRAND NEW INITIATIVE FOR
THE AUTISM SOCIETY SERVES AS A
RESOURCE FOR AUTISTIC PEOPLE,
FAMILY MEMBERS AND ADVOCATES
IMPACTED BY ALL FORMS OF
DISCRIMINATION, CRIMINAL JUSTICE
IS ONE WITH FORM WE'RE HOPING TO
MOVE INTO OTHER AREAS AROUND
HOUSING AND HEALTH CARE AND
EMPLOYMENT AS WE GO ALONG IN THE
EDUCATION SYSTEM.
BUT WE'RE STARTING WITH THE
CRIMINAL LEGAL SYSTEM BECAUSE OF
ITS IMPACT ON PEOPLE AND THE
SEVERITY.
SO WHO WE ARE.
THE AUTISM JUSTICE CENTER HAS A
FANTASTIC TASK FORCE.
ON THE TASK FORCE WE HAVE
DIRECTLY IMPACTED INDIVIDUALS.
SO THAT MEANS INDIVIDUALS WHO
HAVE HAD SOME EXPERIENCE WITH
THE CRIMINAL LEGAL SYSTEM WHERE
THEY'RE AUTISM DID IN FACT
INTERACT WITH A PLA PARTICULAR
SITUATIONS.
WE HAVE LAWYERS.
WE HAVE PROFESSIONAL ADVOCATES.
WHAT WE'VE BEEN ABLE TO DO EBB A
SHORT AMOUNT OF TIME IS COME
TOGETHER AND PROVIDE EXPERTISE
TO PEOPLE AND THEIR FAMILIES WHO
ARE ENCOUNTERING SOME ASPECT OF
THE CRIMINAL LEGAL SYSTEM AT
THIS PARTICULAR MOMENT.
FOR EXAMPLE, I GOT A CALL FROM A
FAMILY YESTERDAY WHOSE SON WAS
IN A CAR ACCIDENT.
THERE WERE CRIMINAL CHARGES
ATTACHED TO THAT ACCIDENT AND
WERE CONCERNED ABOUT THE LEGAL
REPRESENTATION THEIR SON WAS
GETTING BECAUSE THEY DIDN'T FEEL
THE ATTORNEY UNDERSTOOD AND THE
IMPACT IT MAY HAVE HAD ON THEIR
SON'S REACTION TO THE CAR
ACCIDENT.
I WAS ABLE TO SHARE RESOURCES
WITH THEM.
BRIEFLY, I'M GOING TO TALK ABOUT
AUTISM AND THE JUSTICE SYSTEM
AND TALK A LITTLE BIT ABOUT RACE
AND AUTISM FROM WHAT WE HAVE
SEEN AND CURRENTLY SEEING.
SOME ISSUES WE'RE COVERING AT
THE AUTISM JUSTICE CENTER AND
SOME OF OUR RECOMMENDATIONS TO
MAKE IMPROVEMENTS.
AUTISM AND THE JUSTICE CENTER.
HERE'S WHAT'S OUT THERE.
AUTISTIC PEOPLE SEVEN TIMES MORE
LIKELY TO INTERACT WITH THE
JUSTICE SYSTEM THAN NON-AUTISTIC
AND COMES FROM BEING VICTIMIZED
AND INTERACTIONS WITH POLICE
OFFICERS MORE OFTEN.
IT ALSO COMES FROM HAVING MENTAL
HEALTH ISSUES, FOR EXAMPLE, I
THINK THE FIGURE IS 70% OF
AUTISTIC PEOPLE EXPERIENCE
ANXIETY.
THERE ARE OTHER FORMS OF MENTAL
HEALTH, BEHAVIORAL HEALTH NEEDS
THAT COULD INCREASE AN AUTISTIC
PERSON COMING IN CONTACT AND
OVERRELIANCE ON CALLING 9-1-1
AND A RESPONSE TO A MENTAL
HEALTH NEED.
AUTISTIC CHILDREN EXPERIENCE
DISPROPORTIONATE LEVELS OF
SCHOOL DISCIPLINE.
MOST OF US HAVE SEEN REPORTS OF
RESTRAINTS AND SECLUSION BEING
USED TO DEAL WITH KIDS WHO HAVE
BEHAVIORAL HEALTH NEEDS.
SOMETIMES SCHOOLS ALSO HAVE AN
OVERRELIANCE ON POLICE OFFICERS
TO INVENE IN THOSE SITUATIONS
EVEN WITH CHILDREN YOUNG AS 5 OR
7 WE'VE SEEN AS WELL.
SOMETIMES WE SEE BYLAW
ENFORCEMENT ENCOUNTERS BECAUSE
THERE'S A NEED FOR ASSISTANCE
EITHER FROM A CAREGIVER, PARENT,
TEACHER WHO DOES NEED SUPPORT
AND ASSISTANCE WHEN THERE IS
PHYSICAL AGGRESSION HAPPENING OR
POSSIBLE.
THAT ALSO INCREASES THE
LIKELIHOOD OF COMING INTO
CONTACT WITH THE CRIMINAL LEGAL
SYSTEM.
THERE'S SOME STATISTICS SHOWING
PLACES SUCH AS GROUP HOMES AND
DAY PROGRAMS ARE FREQUENT
CALLERS TO NRGS.
-- 9-1-1.
AT THE AUTISM JUSTICE CENTER
ANOTHER ISSUE WE'RE SEEING THAT
RELATE TO CONDUCT AROUND SEXUAL
BEHAVIOR THAT CAN EITHER BE IN
PERSON OR ONLINE BEHAVIOR AND IT
IS LEADING TO INCREASED CONTACT
WITH THE CRIMINAL LEGAL SYSTEM.
SO RACE AND AUTISM.
WE KNOW FEWER BLACK AND LATINO
CHILDREN ARE DIAGNOSED AS
AUTISTIC THOUGH THAT IS CHANGING
NOW WHICH IS A GOOD THING DUE TO
ACCESS AND AWARENESS THAT WASN'T
THERE PREVIOUSLY.
ASIAN CHILDREN HAPPEN TO HAVE
THE HIGHEST DIAGNOSIS RATE AND
THEY'RE NOT SURE IF IT'S RACKET
OR OVER DIAGNOSIS OR WHAT'S
GOING ON THERE.
BLACK AUTISTIC INDIVIDUALS ARE
MORE LIKELY TO BE HURT OR KILLED
DURING POLICE ENCOUNTERS AND
TRACKS WHAT WE KNOW ABOUT BLOCK
BLACK PEOPLE IN GENERAL DURING
POLICE ENCOUNTERS AND SENTENCED
TO LONGER PRISON TERMS AND
THAT'S A REFLECTION OF WHAT WE
KNOW ABOUT BLACK PEOPLE.
THAT'S IN THE CRIMINAL JUSTICE
SYSTEM.
SO WHEN YOU ADD AUTISM OR
ANOTHER DISABILITY YOU GET THE
SAME DISPROPORTIONATE RATES
THERE.
A COUPLE EXAMPLES.
AT THE AUTISM JUSTICE CENTER,
WE'RE PROUD TO HAVE OUR
AMBASSADOR.
NEALEY WAS 19-YEAR-OLD IN
VIRGINIA WHEN HE WAS SITTING
OUTSIDE OF A LIBRARY.
SOMEONE MADE A PHONE CALL SAYING
THEY SAW A SUSPICIOUS PERSON, I
THINK THEY IDENTIFIED HIM AS A
SUSPICIOUS BLACK PERSON AND
THINK THEY ALSO SAID THERE WAS A
GUN PRESENT.
WHEN THE POLICE OFFICER ARRIVED,
NEALEY AND THE POLICE OFFICER
HAD A DIFFICULT INTERACTION,
NEALEY EXPERIENCED A REACTION,
FIGHT OR FLIGHT REACTION WHICH
IS ALSO COMMON AND HE ASKED TO
BE LEFT ALONE, THAT DIDN'T
HAPPEN, THERE WAS A PHYSICAL
ALTERCATION, NEALEY WAS
ARRESTED, CHARGED WITH SEVERAL
CRIMES AND HAD A TERRIBLE
EXPERIENCE OF BEING INCARCERATED
I THINK MORE THAN 10 YEARS OR
AROUND 10 YEARS, LONG PERIODS OF
THAT WERE SPENT IN SOLITARY
CONFINEMENT OR OTHER FORMS OF
CONFINEMENT THAT WERE FRANKLY
TORTUROUS.
DUE TO A LOT OF ADVOCACY FROM
THE DISABILITY RIGHTS COMMUNITY
AND SOCIAL JUSTICE COMMUNITY AT
LARGE, HE WAS FINALLY RELEASED
AND GOT A CONDITIONAL PARDON
FROM THE STATE OF VIRGINIA AND
HE'S A WONDERFUL ADVOCATE AND
TELLS HIS STORY SO WELL AND PART
OF WHAT HE'S GIVING BACK TO
SOCIETY NOW.
ANOTHER INCIDENT WAS A MAN IN A
CAR ACCIDENT AND INJURED PEOPLE
AND TAKEN TO JAIL AND QUESTIONS
NOT THE HOSPITAL AND QUESTIONED
FOR HOURS WITHOUT AN ADVOCATE,
WITHOUT AW PARENT, WITHOUT AN
ATTORNEY, WHEN I SAW THE VIDEO
HE WAS BLEEDING AND CLEAR TO ME
THIS YOUNG MAN WAS DISORIENTED.
AND I HAVE QUESTIONS AND THERE'S
DIFFICULTIES IN THE JUDICIAL
SYSTEM WHEN IT COMES
DIFFERENTIATING FROM AUTISM AND
AUTISTIC PEOPLE DO NOT HAVE
INTELLECTUAL DEFICITS AND WE'RE
SEEING LOTS OF PROBLEMS AROUND
STRICT LIABILITY LAWS AND WITH
STRICT LIABILITY LAWS IF YOU DID
THE THING YOU'RE GUILTY AND IT'S
VERY HARD TO ADD IN A MITIGATING
DEFENSE OR MAY EXPLAIN THAT
BEHAVIOR.
SO AUTISM AND THE COURTS
DISTINGUISHING MENTAL ILLNESS.
WE KNOW IT'S A NEUROLOGICALLY
BASED DISABILITY AND SPECTRUM
WITH LOTS OF SYMPTOMS.
PEOPLE COULD BE ANYWHERE ON THE
SPECTRUM BUT MOSTLY IMPAIRS
SPECIAL LEARNING AND THAT CAN BE
DIFFICULT TO EXPLAIN SOMEONE NOT
FAMILIAR WITH DISABILITY OR
AUTISM.
IF YOU ARE DEFENDANT IN A CASE
AND DID SOMETHING, THERE'S A
CRIMINAL CHARGE ATTACHED AND YOU
GO BEFORE COURT IT'S VERY -- AND
IF YOU PRESENT AS IF YOU
UNDERSTAND PERFECTLY WHAT'S
HAPPENING AND NOT SOMEBODY WITH
AN OBVIOUS DISABLE THERE'S A
BIAS.
THE COURT MAY THINK IT'S NOT
PRESENT OR NOT THAT RELEVANT TO
THE CRIMINAL CHARGE.
THAT'S A HURDLE WE'RE FACING.
INTELLECTUAL VERSUS SOCIAL
LIMITATIONS.
THAT'S ANOTHER ONE BECAUSE WHEN
YOU'RE BEING CHARGED WITH A
CRIME AND YOU ARE HAVING TO
DEFEND YOURSELF AND YOUR ACTIONS
AND WANT TO TALK ABOUT A
STIMULUS THAT OCCURRED THAT WAS
DISABILITY RELATED THAT LED TO
THAT ACTION, IF YOU'RE ABLE TO
DO THAT WELL, THAT ACTUALLY MAY
BE A BIAS BECAUSE AGAIN THE
COURT LOOKS AT IT AND THE
PROSECUTOR LOOKS AT IT AS YOU'RE
CONVENIENTLY USING DISABILITY.
LIKE AS AN EXCUSE IN THIS CASE
WHERE IF YOU'RE ABLE TO COME
HERE AND TALK TO ME AND ABLE TO
EXPLAIN WHAT HAPPENED, I DON'T
SEE HOW DISABILITY IS A FACTOR.
SO, CONVEYING COMPROMISE AGAINST
DYSFUNCTIONING AND CONVEYING
SOMEBODY MAY BE -- MAY BE
PERFECTLY CAPABLE OF FUNCTIONING
IN ONE AREA AND HAS SIGNIFICANT
LIMITATIONS IN ANOTHER IS HARD
AND DIFFICULT.
I THINK WE HAVE A LONG WAYS TO
GO IN TERMS OF MAKING SURE OUR
JUDICIAL SYSTEM HAS A GRASP OR
FIRM INFORMATION OF AUTISM IN
THAT SENSE.
STRICT LIABILITY LAW.
THE PROSECUTION DOESN'T NEED TO
PROVE A DEFENDANT INTENDED TO DO
SOMETHING ILLEGAL OR WAS
RECKLESS OR NEGLECT.
IT'S ENOUGH FOR A CONVICTION TO
JUST PROVE THE ACT WAS COMMITTED
AND THAT THE DEFENDANT DID IT
WHICH IS DIFFICULT WHEN WE'RE
TRYING TO SAY, YES, BUT HERE'S
THE BACKGROUND THAT LED TO THAT
PERSON GETTING THERE.
THERE WAS SOME INFORMATION
MISSING, SOME EDUCATION THEY
NEVER RECEIVED AND I'LL GIVE YOU
AN EXAMPLE OF WHERE THAT COMES
IN AT THE AUTISM JUSTICE CENTER,
WE SEE THIS MOST IN CRIMINAL
CASES INVOLVING SEXUAL
INTERACTIONS ONLINE OR IN
PERSON.
SO FOR PEOPLE WHO HAVE TROUBLE
COMMUNICATING OR FORMING SOCIAL
BONDS JUST OUTSIDE IN THE
COMMUNITY, ONLINE ACTIVITIES CAN
BE ATTRACTIVE.
PEOPLE CAN SPEND EXCESSIVE
AMOUNT OF TIME ONLINE IF YOU'RE
IN CHAT ROOMS OR WHATEVER ONE
FEATURE COULD BE COLLECTING
THINGS AND IF YOU'RE COLLECTING
IMAGES WHETHER AND IT INVOLVES
UNDER AGE PEOPLE AND IF YOU HAVE
IT OR POSSESS IT YOU'RE LIABLE
FOR BREAKING STRICT LIABILITY
LAWS AROUND SEX FINANCE AND
EXPLOITATION.
I HEARD PEOPLE SAY THEY DIDN'T
KNOW IT CONTAINED THAT
INFORMATION OR THEY HAD
DIFFICULTY DISTINGUISHING AGES
OR FACES BECAUSE THAT'S NOT WHAT
THEY WERE LOOKING AT.
THEY WERE FOCUSSED ON A
PARTICULAR FEATURE.
WE'RE SEEING PEOPLE BEING
PROSECUTED AND QUITE HEAVILY.
WE'RE SEEING PEOPLE GET PLEA
DEALS SOMETIMES FOR FIVE YEARS,
SOMETIME FOR MORE.
A LOT OF THESE PARTICULAR STRICT
LIABILITY STATUTES COME WITH 30
YEARS IN PRISON, MAYBE A LIFE
TIME IN PRISON.
SIGNIFICANT.
IN ONE PARTICULAR CASE WE'RE
HELPING WITH THIS YOUNG PERSON
HAD JUST TURNED 18 OVER THE
SUMMER AND HAD FRIENDS WHO WERE
YOUNGER, THEY WERE GIRLS THEY
ENGAGED IN SEXUAL RELATIONSHIP.
THEY DID WHAT IS COMMON FOR A
LOT OF YOUNG PEOPLE TODAY
DISABILITY OR NO DISABILITY AND
DID A RECORDING ON THEIR PHONES,
TOOK PICTURES OF THEIR PHONES,
UPLOADED IT, IMAGES GOT SPREAD
AROUND THE COMMUNITY AND PARENTS
WERE SET AND CHARGES WERE
PRESSED.
THIS YOUNG AUTISTIC PERSON IS
STILL IN JAIL FACING SIGNIFICANT
CHARGES AS A RESULT OF THAT.
THE PROSECUTOR HAS SAID LIFE
IMPRISONMENT IS ON THE TABLE.
I'M RUNNING OUT OF TIME, I'M
LEARNING, BUT JUST TO GIVE YOU
AN IDEA, PART WHATEVER WE WANT
TO DO IS SOME TRAINING AND
EDUCATION FOR OUR JUDICIAL
SYSTEM AROUND THESE ISSUES
BECAUSE HAVE YOU STRICT
LIABILITY LAWS AND YOU HAVE THE
SOCIAL COMMUNICATION DEFICITS
AND VERY LONELY PEOPLE WHO MAY
BE MORE PRONE TO EXCESSIVE
ONLINE BEHAVIOR IS JUST A
PERFECT CONUNDRUM TO LEAD TO
SIGNIFICANT LEGAL, CRIMINAL
ENTANGLEMENTS AND WE HAVE TO DO
MORE.
>> Josh: NEXT WE HAVE LEIGH ANNE
McKINGSLEY AT THE ARC OF THE
UNITED STATES.
>> HELLO, EVERYONE.
LET'S SEE IF I CAN I WANT TO
MAKE SURE EVERYONE CAN HEAR ME
AND BEFORE I GET STARTED TO SAY
THANK YOU SO MUCH TO SUSAN FOR
INVITING US HERE AS WE HAVE THIS
IMPORTANT DISCUSSION AROUND
JUSTICE ISSUES.
IT'S INCREDIBLY IMPORTANT AND
OFTEN TIMES BEING IN THE FIELD
FOR A FEW YEARS NOW I NOTICED
SOMETIMES IT DOESN'T MAKE THE
CUT IN TERMS OF PRIORITY ISSUES
UNTIL THERE'S A CRISIS AND THEN
PEOPLE WANT TO TALK ABOUT IT.
SO THE GOAL I THINK WE'RE
BRINGING HERE TODAY AS A PANEL
TOO IS TO SAY WE NEED TO GET IN
FRONT OF THAT AND WE ALL ARE
WORKING TOGETHER TO DO THAT.
WE'RE SO EXCITED TO HAVE THE
OPPORTUNITY TO TALK TO YOU TODAY
ABOUT IT.
JUST A LITTLE BIT ABOUT MYSELF.
I STARTED WITH THE ARC OF THE
UNITED STATES 27 YEARS AGO
BECAUSE OF THE AMERICANS WITH
DISABILITIES ACT PASSED FOUR
YEARS PRIOR AND WE GOT A GRANT
THROUGH THE DEPARTMENT OF
JUSTICE TO CREATE MATERIALS FOR
LAW ENFORCEMENT, COURTS, PEOPLE
WITH INTELLECTUAL AND
DEVELOPMENT DISABILITIES ON THIS
VERY TOPIC.
I LEARN ED HOW MANY PEOPLE WITH
DEVELOPMENT DISABILITY WERE
BEING EXECUTED.
I COULD NOT BELIEVE WHAT I FOUND
OUT.
I MET WITH ADVOCATES AND NOT
MANY THROUGHOUT THE COUNTRY
DOING THIS WORK AND THOUGHT
NOBODY KNOWS THIS AND YOU CANNOT
UNSEE THAT.
I REALIZED THERE'S SO MUCH
PEOPLE DON'T UNDERSTAND ABOUT
THIS POPULATION, WHETHER IT'S
AUTISM, FETAL ALCOHOL SPECTRUM
DISORDER OR DEVELOPMENT
DISABILITIES, WE HAVE TO THAT'S
WHY WE STARTED THE CENTER AND
CAN'T STOP ADVOCATING.
ONE PICTURE IS OF ETHAN SAYLOR
WHEN WE STARTED 10 YEARS AGO AND
HE WAS A PERSON WITH DOWN
SYNDROME WHO DIED WHEN HE WANTED
TO SEE A SECOND SHOWING OF A
MOVIE.
HE WENT WITHOUT A TICKET BACK IN
THE MOVIE THEATRE AND THERE WAS
OFF-DUTY POLICE THERE AND THEY
WERE CALLED OVER AND ENDED UP
TAKING HIM DOWN AND DIED DUE TO
ASPHYXIATION AND HIS MOTHER
BEGAN A CRUSADE TO MAKE SURE
EVERYONE UNDERSTOOD WHAT
HAPPENED TO HER SON, ETHAN, AND
IT DID NOT HAPPEN AGAIN.
AND WE WENT TO MARYLAND TO
PROVIDE POLICE TRAINING AND
THAT -- THE REASON I BRING UP
HIS STORY IS IN 2020 ANOTHER
SIMILAR SITUATION HAPPENED WITH
ERIC PARSA YOU SEE ON THE SCREEN
AND HIS MOTHER WITH HIM.
THIS WAS PARTICULARLY
HEARTBREAKING BECAUSE HE DIED
WITH HIS MOTHER HOLDING HIS HAND
WITH POLICE THERE.
ALSO HE DIED FOR THE SAME
REASONS WHEN HE WAS HELD TOO
LONG.
THERE WAS A LAWSUIT AND NOW THAT
THE LAWSUIT IS DONE THEY'RE ABLE
TO SPEAK OUT ABOUT THIS AND THIS
FAMILY IS AN AMAZING FAMILY THAT
I GOT TO MEET JUST LAST -- AT
OUR LAST CONVENTION IN NEW
ORLEANS.
SPEAK WITH THEM AT LENGTH OF
WHAT THEY'RE EXPERIENCE HAS BEEN
AND HOW THEY TRIED TO DO
EVERYTHING RIGHT AND A FEW
MONTHS BEFORE THIS INCIDENT
THERE WAS AN ENCOUNTER WITH
POLICE THAT WENT GREAT.
WHAT'S THE ISSUE?
WHY CAN'T IT BE CONSISTENT?
WHAT'S GOING ON?
WHAT DO WE NEED TO LEARN FROM
ERIC'S STORY?
AND THEY'RE BOUND AND DETERMINED
WE LEARN FROM THIS AND ERIC IS
HONORED THROUGH THE SITUATION.
I KNOW SHE'S LISTENING TODAY SO
I WANT TO SAY THANK YOU SO MUCH
TO DARREN AND DONNA FOR SHARING
THEIR STORY WITH US.
YOU HEARD SOME OF THE
STATISTICS.
I ALWAYS WANT TO START WITH THE
STORIES BECAUSE THAT'S WHAT
MATTERS BUT STATISTICS GETS US
THE ATTENTION FOR THE GRANTS AND
MONEY TO SUPPORT THE ISSUE.
I WANT TO BRING TO YOUR
ATTENTION THAT WE DO HAVE DATA
FROM THE BUREAU OF JUSTICE
STATISTICS AND THAT IS THE DATA
ACTUALLY MONEY FROM THE BJA IS
WHAT ALLOWED US TO CREATE THE
INFO GRAPHICS AND 2 IN 10
PRISONERS AND 3 IN 10 JAIL
INMATES REPORTED HAVING A
COGNITIVE DISABILITY.
THAT'S THE MOST COMMON.
THEY LOOKED AT DIFFERENT TYPES
AND SAW COGNITIVE WAS THE MOST
COMMONLY REPORTED.
I WANTED TO BRING THAT OUT BUT
IF YOU LOOK AT CRIME VICTIMS THE
SAME THING IS TRUE.
AGAIN, THE BUREAU OF JUSTICE
STATISTICS LOOKS AT HOW PEOPLE
WITH COGNITIVE DISABILITIES ARE
VICTIMIZED AND FOUND THEY WERE
SEVEN TIMES MORE LIKELY TO
EXPERIENCE SEXUAL VIOLENCE.
WHETHER ON THE SUSPECT DEFEND
EPT OR VICTIM SIDE, COGNITIVE
DISABILITIES ARE MOST LIKELY TO
BE OVERREPRESENTED IN THE
SYSTEM.
SO WE CAN'T JUST SAY WE'RE GOING
TO LOOK AT IT FROM THIS ANGLE OR
THIS ANGLE AND UNFORTUNATELY
THAT'S HOW THE FOUNDING STREAMS
WORK AND WE'RE NOT ABLE TO BRING
THESE TOGETHER AND HOW ARE THESE
INTERACTING.
IT'S IMPORTANT WE THINK ABOUT
THAT WHEN WE'RE LOOKING AT
SOLUTIONS, POLICIES AND THAT
KIND OF THING.
SO BECAUSE THERE'S SO MANY
DIFFERENT DIVERSE ISSUES AROUND
THIS, THE ARC STARTED THE
NATIONAL CENTER ON CRIMINAL
JUSTICE AND DISABILITY 10 YEARS
AGO AND THANK YOU TO THE BUREAU
OF JUSTICE ASSISTANCE, BJA FOR
HELPING CREATE THE SEED MONEY TO
HELP START THE CENTER AND
PROVIDE TRAINING BUT NOT
TRAINING THAT JUST DOES A
ONE-OFF TRAINING BUT CREATES
COMMUNITY-BASED SOLUTIONS AND
I'LL SAY A LITTLE BIT MORE ABOUT
THAT IN A SECOND.
THIS IS WHAT WE'VE BEEN WORK ON
IN THE PAST 10 YEARS TO PROVIDE
TRAINING AND TECHNICAL
ASSISTANCE, INFORMATION
REFERRAL.
WE PROVIDE NATIONWIDE
INFORMATION REFERRAL.
IF IT'S A PERSON WHO'S AN
ATTORNEY OR DISABILITY OR FAMILY
MEMBERS, LOOKING FOR SUPPORT OR
ASSISTANCE, WE PROVIDE THAT AND
I WILL JUST MENTION THAT MANY OF
OUR CALLS AS WELL CARLEAN WAS
TALKING ABOUT DEALS WITH SEXUAL
OFFENSE.
THAT'S BEEN SINCE I'VE BEEN AT
THE ARC.
WE GET SO MANY CALLS AROUND
THAT.
THERE'S MANY MANY ISSUES I'D
LIKE TO UNPACK WITH YOU THAT
WOULD TAKE TOO LONG TO GO INTO
THAT DISCUSSION BUT PLEASE KNOW
THAT'S A HUGE NEED OUT THERE IN
THE COMMUNITY THAT WE CONTINUE
TO TRY TO ADDRESS.
AND RESOURCE COLLECTION AND
EDUCATION.
AND DISABILITY HAS TO BE KEY AT
EVERY CONVERSATION AROUND THIS
ISSUE AND WE HAVE YOUNG PEOPLE
WITH DISABILITIES ARE 13% MORE
LIKELY TO BE ARRESTED FROM THEIR
PEERS AND IF YOU LOOK AT BLACK
YOUTH, THAT FIGURE JUMPS TO 17%.
AND PEOPLE WITH DISABILITIES
OVER ALL HAVE A 43% CHANCE OF
ARREST AND DISPROPORTIONATE
AMOUNTS FALL ON YOUNG BLACK MEN.
WE CAN'T HAVE THE CONVERSATION
WITHOUT CENTERING THE ISSUES AND
WHAT WE'RE THINKING ABOUT WHEN
POLICY, TRAINING, WHATEVER IT IS
THAT HAS TO BE KEY.
-- HAS TO BE KEY.
I MENTION THE DATA FROM BJS AND
THE STORY OF JAMES METERS A
SURVIVOR OF SEXUAL VIOLENCE.
HE TOLD ME SEVEN DIFFERENT
INCIDENTS OF SEXUAL RELATED
VIOLENCE THROUGHOUT HIS LIFE.
WE KNOW IT'S HIGHLY COMMON FOR
PEOPLE WITH INTELLECTUAL
DEVELOPMENT DISABILITIES
INCLUDING AUTISM TO HAVE SOME
TYPE OF SEXUAL VIOLENCE IN THEIR
LIVES.
I MET JAMES WHEN I STARTED AT 24
AND WAS ON THE BOARD OF
DIRECTORS AND FOUND OUT WE BOTH
HAD SEXUAL ASSAULT IN OUR
BACKGROUND.
WE STARTED TALKING ABOUT HOW IN
THE WORLD IS THE ARC NOT TALKING
ABOUT THIS, ARE OTHER PEOPLE NOT
TALKING ABOUT THIS IF WE KNOW
THIS IS COMMON.
YOU KNOW, WE DIDN'T HAVE TE DATA
YET.
IT WASN'T UNTIL LATER WE GOT THE
CATEGORY OF DISABILITY ADDED TO
THE NATIONAL CRIME VICTIM DATA
AND AS A SURVIVOR I KNEW IT WAS
AN ISSUE BECAUSE I KNEW THE
NUMBERS IN THE GENERAL
POPULATION.
IF IT'S HAPPENING IN THE
DISABILITY COMMUNITY WE HAVE TO
RAISE AWARENESS.
HIS STORY IS AN AMAZING ONE HE'S
GONE THROUGH SO MANY DIFFERENT
SEASONS IN HIS LIFE BUT KNOWING
ONE OF THE THINGS HE REALLY
WANTED TO DO IS TALK ABOUT THE
ISSUE.
HE RAISED AWARENESS THROUGHOUT
THE COUNTRY OF CRIME VICTIMS AND
I ALWAYS WANT TO MENTION HIS
STORY AND THERE'S INITIATIVES
THE CENTER HAS BEEN WORKING ON.
WE CURRENTLY HAVE THE GRANT WE
WERE JUST AWARDED THROUGH THE
COPS OFFICE THAT'S THE COMMUNITY
ORIENTED POLICING SERVICES.
AND THEY FOCUS ON COMMUNITY
POLICING WITHIN THE LAW
ENFORCEMENT AND CREATING WHAT'S
CALLED JUST POLICING ONLINE AS
WELL AS IN PERSON TRAINING AND
THE UNIVERSITY OF CINCINNATI AS
WELL AS THE SOUTH FLORIDA AND
WE'RE LOOKING AT HOW TO INCREASE
THE ACCESS TO VICTIMS
SPECIFICALLY LOOKING AT ALL
TYPES OF VICTIMIZATION.
I WON'T GO THROUGH ALL THOSE BUT
IF YOU HAVE ANY QUESTIONS ABOUT
THE OTHER PROJECTS WE'RE WORKING
ON, I KNOW AND THERE'S PROJECTS
WE'RE WORKING ON TOGETHER.
I WILL MENTION EARLIER YOU ALL
WERE TALKING ABOUT THE NEED FOR
LOOKING AT INTERNATIONAL
RESEARCH AND PROVIDED MONEY AND
OVER THE PAST SEVEN YEARS AND
HOW TO LEARN FROM EACH OTHER AND
THAT'S IMPORTANT WHEN YOU FIND A
LACK OF RESEARCH AND SOLIDARITY
AROUND THESE ISSUES IN YOUR OWN
COUNTRY.
WE'VE BEEN BUILDING WAYS TO
LEARN FROM EACH OTHER IN THAT
WAY.
AND WHEN WE START THE NATIONAL
CENTER, THIS WAS THE KEY
TRAINING THAT WE CREATED CALLED
PATHWAYS TO JUSTICE.
THIS IS A ONE-DAY TRAINING THAT
INVOLVES LAW ENFORCEMENT,
ATTORNEYS, VICTIM SERVICE S AND
DISABILITIES ADVOCATES.
WHAT'S DIFFERENT IS WE HAVE SET
OUT WAY TO ENSURE THE ENTIRE
COMMUNITY THAT IS INVOLVED IN
THIS WILL HELP CO-TRAIN AND
CREATE A PLAN MOVING FORWARD.
SO WE HEARD TODAY IT'S IMPORTANT
TO NOT JUST THINK ABOUT THIS AS
TRAINING BUT HOW DO WE BUILD THE
LONG-TERM APPROACH.
WE CREATED WHAT'S CALLED
DISABILITY RESPONSE TEAMS NUMBER
ONE.
AND WE HAVE TO HAVE AT LEAST THE
FOLKS ON THE TEAM AND WHAT IS IT
IN YOUR COMMUNITY MOST NEEDED.
WHAT DO YOU HAVE ACCESS TO?
WHAT DATA DO YOU HAVE?
WHERE IS IT YOU CAN MAKE A
DIFFERENCE AND NOTHING ABOUT US
WITHOUT US AND RELATIONSHIP
TEAMS AND WE'RE TALKING TO
DIFFERENT UNIVERSITIES NOW TO
START DOING MORE THOROUGH
INVESTIGATIONS AND EVALUATION
AND OF THESE TEAMS SAYING IF WE
PUT TEAMS IN PLACE, HOW CAN THEY
REALLY MAKE A DIFFERENCE
LONG-TERM IN THESE COMMUNITIES.
AND IF YOU EVER HEARD OF THE
SEQUENTIAL INTERCEPT MAPPING WE
OVERLAYS INTELLECTUAL
DEVELOPMENT DISABILITY AND THIS
IS A GREAT TOOL WHEN YOU THINK
OF AS A COMMUNITY OR POLICY
DEVELOPMENT, IT GOES THROUGH THE
ENTIRE CRIMINAL JUSTICE SYSTEM
A
AND ARE WE PROVIDING
ACCOMMODAT
ACCOMMODATIONS AND WE CAN'T JUST
INVOLVE LAW ENFORCEMENT AND
THINK THAT'S IT.
WE HAVE TO INVOLVE EVERYONE WHO
COMES IN CONTACT WITH SOMEONE
WITH AUTISM OR DEVELOPMENT
DISABILITIES.
THIS IS WHERE WE HAVE PATHWAYS
SO FAR.
WE'VE BEEN TALKING WITH SOUTH
YEAR AND BRINGING MORE TRAINING
IN THEIR COUNTRY.
WE SEE DESIRE FOR THIS NOT JUST
IN OUR COUNTRY BUT OTHERS AS
WELL.
HERE'S SOME OF THE RESOURCES
THAT WE'LL PROVIDE THROUGH THIS
TO SUSAN FOR YOU TO TAKE A LOOK
AT LATER ON.
SOME OF THE THINGS I MENTIONED
TODAY PLUS, WE HAD A VIDEO COME
OUT ON DISABILITY RIGHTS AND
CRIMINAL JUSTICE.
IT'S A SHORT VIDEO AND YOU CAN
LOOK AT IT AND SHARE IT WITH
OTHERS WHO MAY BE INTERESTED.
I WANTED TO MENTION TOO WE HAVE
STAFF THAT AREN'T HERE TODAY BUT
JOSH BRANCH IS AN ATTORNEY AND
JESSICA OPPENHEIM WHO WORKED AT
OUR NATIONAL CENTER AND HAVE A
LINK TO PATHWAYS TO JUSTICE AS
WELL AND THANK YOU SO MUCH AND
I'LL PASS IT ON.
>> WE HAVE BROOK MOUNT AND KELLY
BURKE.
BJA IS LOCATED WITHIN THE OFFICE
OF JUSTICE PROGRAMS ONE OF THREE
GRANT MAKING COMPONENTS WITH
DOJ.
THE BUREAU OF JUSTICE ASSISTANCE
WAS CREATED IN 1984 TO REDUCE
CRIME, CREATE SAFER COMMUNITIES
AND REFORM OUR NATION'S CRIMINAL
JUSTICE SYSTEM.
WE HAVE PROGRAMS TRANSFERRING
KNOWLEDGE THROUGH TRAINING AND
TECHNICAL ASSISTANCE, DEVELOPING
GUIDANCE AND RESOURCES AND
ENGAGING WITH PARTNERS AND
STAKEHOLDERS ACROSS THE COUNTRY
TODAY YOU'LL HEAR ABOUT THE
INCREDIBLE WORK BJA HAS
BASKETBEEN
SUPPORTING WITH THE NATIONAL
ASSOCIATION OF CHIEFS OF POLICE
AND THE DEVELOPMENT OF TRAINING
AND RESOURCES TO RAISE AWARENESS
IN THE LAW ENFORCEMENT COMMUNITY
SUCH AS EVIDENCE-BASED BEST
PRACTICES WITH PEOPLE WITH
DEVELOPMENT AND INTELLECTUAL
DISABILITIES AND I'LL TURN IT
OVER TO KELLY BURKE TO GET IN
THE DETAILS REGARDING THESE
PROGRAMS BUT THANK YOU SO MUCH.
>> THANK YOU, BROOKE.
I'M KELLY BURKE WITH THE
INTERNATIONAL ASSOCIATION OF
CHIEFS OF POLICE FOR THOSE NOT
FAMILIAR WE'RE AGE INTERNATIONAL
NON-PROFIT MEMBERSHIP
ORGANIZATION MADE UP OF POLICE
PROFESSIONALS FROM AROUND THE
WORLD WE HAVE ABOUT 33,000
MEMBERS AND WE FOCUS ON
EDUCATION AND TRAINING AND
ADVOCACY AND ENGAGEMENT.
ONE OF THE ASPECTS OF OUR WORK
IS WE HAVE GRANT FUNDED
INITIATIVES ON TO DEVELOP
TRAINING AND RESOURCES FOR LAW
ENFORCEMENT AND THEIR
MULTI-DISCIPLINARY PARTNERS ON A
NUMBER OF ISSUES.
THE FIRST ONE I'M GOING TO TALK
ABOUT IS THE ACADEMIC TRAINING
TO INFORM POLICE RESPONSES
INITIATIVE THAT IS A BJA FUNDED
INITIATIVE LED BY THE UNIVERSITY
OF CINCINNATI IN PARTNERSHIP
WITH IACP THE ARC OF THE UNITED
STATES, POLICY RESEARCH
ASSOCIATES AND THE NATIONAL
POLICING INSTITUTE.
THE ACADEMIC TRAINING INITIATIVE
STARTED IN 2020 TO PROVIDE
TRAINING AND ASSISTANCE TO
DEVELOP BEST PRACTICES IN
RESPONSE FOR PEOPLE WITH MENTAL
HEALTH CONDITIONS AND THIS
INITIATIVE LED THE DEVELOPMENT
OF A 40 HOUR CURRICULUM AND
TRAINING AND IT'S A TOOL KIT
I'LL GET TOO IN A MOMENT.
IT WAS DESIGNED TO PREPARE
OFFICERS TO RESPOND TO PEOPLE IN
CRISIS.
THE OVER ALL PHILOSOPHY FOR THE
CURRICULUM IS OFFICER SAFETY,
PUBLIC SAFETY AND DIVERSION FROM
THE CRIMINAL JUSTICE SYSTEM
WHENEVER POSSIBLE.
THE GOALS OF THE RESPONSE OF
INTERVENTION AND TOOL KIT ARE TO
EXPAND KNOWLEDGE OF MENTAL
HEALTH CONDITIONS, SUBSTANCE USE
DISORDERS AND DEVELOPMENT AND
INTELLECTUAL DISABILITIES AS
WELL AS TO CREATE CONNECTIONS
WICK PEOPLE WITH LIVED
EXPERIENCES ENHANCE AWARENESS OF
COMMUNITY SERVICES AND EMPHASIZE
THE DE-ESCALATION OF CRISIS
SITUATIONS WHILE SUPPORTING
OFFICER SAFETY AND WELLNESS.
THE CURRICULUM IS BASED ON THE
MODEL OF CRISIS INTERVENTION
TRAINING YOU MAY HAVE HEARD OF
CIT TRAINING THAT WAS DEVELOPED
OVER 30 YEARS AGO ACROSS THE
COUNTRY.
THIS CURRICULUM WAS BASED ON
THAT 40-HOUR CURRICULUM BUT IS
SIGNIFICANTLY MODIFIED TO
INCLUDE CONTENT THROUGHOUT THE
WHOLE 40 HOURS ON INDIVIDUALS
WITH INTELLECTUAL OR DEVELOPMENT
DISABILITIES.
I THINK IT'S IMPORTANT TO NOTE
THE CURRICULUM FOCUSES ON
BEHAVIOR AND NOT DIAGNOSES
SPECIFICALLY BEHAVIOR THAT
OFFICERS ENCOUNTER IN THE FIELD.
THERE'S A HEAVY PRACTICAL
COMPONENT OF ROLE PLAYING AND
DE-ESCALATION.
THE TRAINING AND TOOLS ARE
DESIGN TO COMPLIMENT THE
DEVELOPMENT AND IMPLEMENTATION
OF LOCAL CRISIS RESPONSE
PROGRAMS ON DEVELOPMENT AT THE
LOCAL LEVEL.
IT PREPARES OFFICERS TO
RECOGNIZE INDIVIDUALS
EXPERIENCING CRISIS RELATED TO
BEHAVIORAL HEALTH CONDITIONS OR
DEVELOPMENT OR INTELLECTUAL
DISABILITIES AND EMPLOYEE
PRACTICES INCLUDING
DE-ESCALATION TECHNIQUES AND
ACCESS LOCAL RESOURCES TO DIVERT
INDIVIDUALS AWAY FROM THE
CRIMINAL JUSTICE SYSTEM.
AND PREPARES OFFICERS TO ENHANCE
THE SAFETY OF THE INDIVIDUALS IN
CRISIS.
THE OFFICERS AS WELL AS
COMMUNITY MEMBERS THIS RESOURCE
WAS DEVELOPED BECAUSE TYPICALLY
CRISIS INTERVENTION TRAINING
DOES NOT INCLUDE ANY CONTENT OR
ONLY LIMITED CONTENT ON
INTELLECTUAL OR DEVELOPMENT
DISABILITIES.
SO THIS CURRICULUM IS UNIQUE
BECAUSE OF THAT ASPECT TO
PROVIDE THE CONTENT AND SKILLS
AND STRATEGIES THROUGHOUT THE
ENTIRE CURRICULUM FOR EFFECTIVE
POLICE RESPONSE.
IT EXPLORE PERCEPTIONS AND AD
ATTITUDES ON DISABILITIES,
DISABILITY CULTURE AND COMMUNITY
PROVIDERS CONTENT ON
CHARACTERISTICS OF DEVELOPMENT
DISABILITIES AND STRATEGIES FOR
RESPONDING MORE EFFECTIVELY AS A
POLICE OFFICER.
THE CURRICULUM ENCOURAGES THE
INCLUSION OF PEOPLE WITH
INTELLECTUAL AND DEVELOPMENT
DISABILITIES IN THE FAMILY AND
PEER PERSPECTIVES PANEL.
IT PROVIDES GUIDANCE AND
OPPORTUNITIES FOR OPPORTUNITIES
FOR INTERACTION AND DISABILITY
RIGHTS AS IT APPLIES TO LAW
ENFORCEMENT OFFICER
INTERACTIONS.
IT ENCOURAGING INCLUSION OF
REPRESENTATIVES FROM THE IDD
SERVICE SYSTEM TO DESCRIBE THEIR
SERVICES TO THE LOCAL OFFICERS
AND WHAT IS AVAILABLE AND
SPECIFIC DE-ESCALATION SKILLS
AND ROLE PLAYING SCENARIOS FOR
RESPONDING TO PEOPLE WITH IDD.
IN ADDITION TO THE TRAINING
THAT'S CUSTOMIZABLE TO THE LOCAL
COMMUNITY CAN BE USED FOR
VARIOUS DIFFERENT TYPES OF
CRISIS RESPONSE PROGRAMMING AT
THE LOCAL LEVEL.
INCLUDING RESPONSES DEVELOPED A
NUMBER OF RESOURCES SPECIFIC TO
LAW ENFORCEMENT.
WE HAVE A RESOURCE ON MENTAL
HEALTH CONDITIONS AND
DEVELOPMENT DISABILITIES AND
KNOWING THE DIFFERENCE THAT IS
SPECIFICALLY TARGETED TO LAW
ENFORCEMENT AS WELL AS ANOTHER
RESOURCE ON DEVELOPMENT
DISABILITIES WHAT OFFICERS NEED
TO KNOW AND SPECIFICALLY
DISCUSSES HOW UNDERSTANDING MORE
ABOUT DISABILITIES LEADS TO SAFE
AND EFFECTIVE INTERACTIONS AND
PROVIDES EXAMPLES OF POSSIBLE
BEHAVIORS OF PEOPLE WITH
DEVELOPMENT DISABILITIES AND
RECOMMENDED RESPONSES.
THERE'S STEPS FOR DEFLECTION AND
DIVERSION.
THIS IS A MULTI-PAGE GUIDE AND
OFFERS INSIGHTS INTO THIS
DEVELOPMENT DISABILITY COMMUNITY
AND OFFERS SUGGESTIONS FOR
SUCCESSFUL INTERACTIONS AND
OUTLINES OPTIONS FOR SAFE AND
EFFECTIVE DEFLECTION AND RE-REST
DIVERSION WHEN PEOPLE WITH IDD
ENCOUNTER LAW ENFORCEMENT AND
EXPERIENCE A CRISIS AND IB NEED
OF SERVICES.
IT DESCRIBES THE FOUR KEY STEPS
OFFICERS CAN TAKE TO SUPPORT
DEFLECTION AND PRE-ARREST
DIVERSION AND COMMUNICATION,
ACCOMMODATION AND SUPPORT AND
THIS WAS ALL ADAPTIVE FROM THE
STAGES OF THE ARC'S PATHWAYS TO
JUSTICE MODEL.
I WANT TO HIGHLIGHT THIS
INCLUDES A LOT OF EXAMPLE OF
ACCOMMODATIONS FOR INDIVIDUALS
WITH IDD.
IT SEEKS IN COMMUNICATION
EFFORTS AND SEEK SUPPORTIVE
SERVICES.
AND I WANT TO ALSO LET YOU KNOW
THAT THIS EFFORT'S CONTINUING.
WE HAVE THE ICP NOW LEADS A NEW
BJA FUNDED EFFORT TO EXPAND ON
THIS TRAINING AND TECHNICAL
ASSISTANCE THAT WAS AWARDED IN
2023.
AND THIS INCLUDES ENHANCING
INTERACTION BETWEEN LAW
ENFORCEMENT BUT IT ALSO INCLUDES
CORRECTIONAL OFFICERS AND PEOPLE
WITH IDD.
THIS IS IN PARTNERSHIP WITH IS
THE ARC OF THE UNITED STATES,
POLICY RESEARCH ASSOCIATES, THE
NATIONAL POLICING INSTITUTE AND
THE AMERICAN CORRECTIONAL
ASSOCIATION TO FURTHER DEVELOP
RESOURCES TO TRAIN AND TECHNICAL
ASSISTANCE TO 39 COMMUNITIES
FUNDED BY ASSISTANCE AROUND THE
COUNTRY AND RECEIVE GRANT
FUNDING DIRECTLY FROM BJA.
BJA PROVIDED FUNDING AND SUPPORT
TO REDUCE INJURIES AND DEATHS OF
INDIVIDUALS WHO GO MISSING DUE
TO THEIR DEVELOPMENTAL
DISABILITY AND HAVE RESOURCES
WITH THE ARC AND NATIONAL CENTER
OF CHILDREN AS WELL AS THE
AUTISM SOCIETY OF AMERICA AND I
WILL JUST DESCRIBE A FEW OF THEM
HERE WE'VE DEVELOP GUIDANCE AND
YOU CAN SEE THE RESOURCES AS
WELL CLICKING LINK.
AN EASY QR CODE IF YOU POINT
YOUR PHONE IN THE PRESENTATION
YOU CAN GO COLLECTLY TO DOWNLOAD
ALL THOSE RESOURCES.
AND THANK YOU FOR INVITING ME TO
SHARE THESE RESOURCES WITH YOU
TODAY.
>> Josh: THANK YOU VERY MUCH,
BROOKE AND KELLY, BOTH.
OUR FINAL PRESENTER FOR THIS
SESSION IS OFFICER LAWIE RAY HE
IS FROM THE MONTGOMERY POLICE
DEPARTMENT IN MARYLAND AND THIS
VERY COUNTY WE'RE IN NOW.
OFFICER REYES WILL BE DISCUSSING
THE MONTGOMERY AUTISM IDD UNIT.
>> HELLO, EVERYONE.
I'M VERY EXCITED TO BE HERE.
IT'S MORE THAN JUST EXCITING.
I SEE FAMILIAR FACES IN THE
AUDIENCE I'VE KNOWN 20 YEARS
WORKING HERE AND WE LOVE EACH
OTHER AND WE'RE A FAMILY AND I
CALLED UPON MANY PEOPLE IN THE
ROOM AND SAID HOLY MOLY I NEED
HELP WITH SOMETHING AND I WANT
TO SHARE THAT BUT THAT IS MORE
THAN JUST OFFICER REYES OR
LAURIE PRESENTING.
I HAVE TO SAY THANK YOU BECAUSE
I CALLED UPON A LOT OF YOU GUYS
TO HELP ME OUT ON THE JOURNEY
WHEN SOMEONE SAYS WHAT DOES L
LAURIE REYES KNOW AND I GET TO
STAND UP HERE AND BE A VOICE.
IT'S HARD TO STAND UP HERE AT
THE PODIUM I WALK AROUND A LOT
AND HAVE TO ATTACH MYSELF TO THE
PODIUM SO I'M NOT WALKING
AROUND.
I'VE BEEN A POLICE OFFICER 26
YEARS I'VE RUN THE MONTGOMERY
COUNTY POLICE IDD UNIT FOR 20
YEARS.
IT STARTED IN 2004.
IT STARTED WHEN OFFICERS WOULD
SAY AUTISM, WHAT IS THAT?
THAT WAS 20 YEARS AGO.
IT'S THE LONGEST NAMED PROGRAM
AND I DON'T GIVE A FLIP BECAUSE
WHEN YOU'RE LOOKING FOR
RESOURCES IN THE POLICE
COMMUNITY IT'S GOING PULL UP AND
SAY I MAY LIVE IN NEVADA BUT
OFFICER LAURIE REYES MAY HELP
OUT AND IT'S THE TRAINING JULY
REACH UNIT.
IT STARTED IN 2004.
WE PROVIDE TRAINING AND
EDUCATION TO ALL OF OUR OFFICERS
SINCE ABOUT 2010 WE STARTED
TEACHING OFFICERS.
WE'LL WOULD SAY WHAT DOES LAURIE
REYES KNOW AND WHERE DID YOU GET
YOUR EDUCATION?
I GET MY EDUCATION FROM THE
PARENTS SITTING BACK LOOKING
BACK AT ME AND ALL THESE PEOPLE
THAT HAVE GIVEN ME THEIR OWN
JOURNEYS AND SAID THIS IS WHAT
OUR OFFICERS NEED TO KNOW.
TRAINING AND EDUCATION,
OUTREACH, EMPOWERMENT.
WARDING A FAMILY MAYBE WE
SEARCHED FOR THEIR SON THREE
TIMES AND BUT WILLING TO GET ON
THE NEWS AND SAY CALL 9-1-1 AND
THEY'LL HELP YOU AND A PARTNER
WHO WOULD DIE IN THE BACK IF I
TOLD HER TO COME UP RIGHT NOW,
FOLLOW-UP AND MOST IMPORTANT,
RESPONSE.
YOU CANNOT TELL A FAMILY TO CALL
9-1-1 IF YOU'RE IN NEED AND THEN
NOT PROVIDE A GREAT RESPONSE.
YOU CAN'T DO THAT.
SO THE UNIT, THAT'S IT IN A
NUTSHELL AND I KNOW WE'RE
PREACHING TO THE CHOIR.
I SHARE WITH YOU BECAUSE THIS IS
WHAT WE TEACH OUR OFFICERS TOO.
JUST TODAY MYSELF AND AMY TATE
OUR CIT OFFICERS.
THAT'S THE OFFICERS RECEIVING A
WE
WEEK LONG CLASS ON MENTAL
HEALTH AND WHY DO STATISTICS
MATTER WHEN YOU TEACH OFFICERS
BEFORE LUNCH AND A WHOLE SLIDE
OF STATISTICS.
SHE'S GOT TO AMP IT UP A LITTLE
BIT.
WHY DO I SHARE THIS WITH ALL OF
YOU?
THIS IS WHAT WE'RE SEEING IN LAW
ENFORCEMENT.
WE'RE AT 1 IN 39 IN MARYLAND AND
1 IN 44 BIRTHS.
WHY'S THAT MATTER?
WHEN I STARTED THE UNIT IN 2004
MOST THE CALLS WE WERE HANDLING
FOR PEANUTS WERE LITTLE GUYS ON
THE AUTISM SPECTRUM.
YOU TEACH OFFICERS AND SAY WHY'S
IT MATTER?
WHO IS RESPONDING TO A CALL FOR
A 5-YEAR-OLD IN THE MIDDLE OF
THE HIGHWAY?
WHO IS RESPONDING IN AYOU W YOU
WILL -- RESPONDING ALL OF YOU.
MY MOM IN HER FORD FOCUS STOPPED
HER CAR TO HELP A 5-YEAR-OLD AND
WE HAVE THEM CALLING THE POLICE
AND WHY DO THE STATS MATTER TO
POLICE OFFICERS?
IT MATTERS BECAUSE THERE'S AN
INCREASE IN AGE AND PREVALENCY.
THAT'S WHAT WE'RE FACING IN LAW
ENFORCEMENT.
SO THAT'S WHY THE STATS AND WHY
WE SHARE THEM WITH POLICE
OFFICERS.
WE TALK ABOUT TRAINING POLICE
OFFICERS.
IT'S NOT JUST ABOUT TRAINING.
WHAT WE CREATED IN MONTGOMERY
COUNTY IS A CULTURE OF WHAT WE
ONCE SAID WAS AWARENESS.
FORGET ABOUT AWARENESS.
IT'S ACTION.
IT'S A CULTURE OF ACTION.
THAT'S WHAT WE'VE CREATED BY
EDUCATING OUR OFFICERS.
WHAT'S STARTED AS JUST A SIMPLE
CLASS OF HEY, HERE'S SOME
BEHAVIORS OR WHAT YOU MIGHT
ENCOUNTER WITH WANDERING OR WHAT
YOU MIGHT ENCOUNTER WITH SOMEONE
IN CRISIS.
IT'S GONE ON TO OFFICERS NOT
LEAVING THE CALL WITHOUT TRYING
TO PROVIDE INDIVIDUALS WITH
OTHER RESOURCES.
BEING IN OFFICER LOOKING OUT
BEYOND THE FIRST CALL.
SO AGAIN, THE STATS MATTER.
ALL RIGHT, SO MANY OF YOU KNOW
THIS YOUNG MAN ON THE SLIDE
RIGHT HERE AND MAYBE HIS MOM IS
ON THIS, MAYBE HIS MOM MAY BE ON
THIS CALL.
SO WHAT WE'RE SEEING IN LAW
ENFORCEMENT WE'RE SEEING IN
MONTGOMERY COUNTY THREE TO EIGHT
FINDS WEEK WHERE WE ROEKT AN
INDIVIDUAL WITH AUTISM USUALLY
THAT WANDERED AND LOCATE BEFORE
CAREGIVERS HAVE CONTACTED US,
THREE TO EIGHT A WEEK.
WE ALSO HAPPENEDAL ABOUT TWO
CALLS A DAY FOR INDIVIDUALS ON
THE AUTISM SPECTRUM.
IN ONE WEEK, IN JUST ONE
CALCULATION FROM MY SERGEANT WE
HAD 27 CALLS FOR SERVICE FOR
INDIVIDUALS ON THE AUTISM
SPECTRUM.
SO WHAT WE'RE SEEING AND I KNOW
I SAY THIS CHALLENGE.
IT'S A CHALLENGE IN LAW
ENFORCEMENT BECAUSE WE'RE SEEING
CALLS OF A MORE SERIOUS NATURE.
NOT BEYOND WANDERING ALONE FOR
INDIVIDUALS IN CRISIS,
CAREGIVERS IN CRISIS THAT NEEDS
SERVICES AND RESOURCES AND OFTEN
TIMES IT'S ME, AMY, THE PATROL
OFFICERS PROVIDING THEM THESE
RESOURCES.
WE'RE ALSO SEEING AN INCREASE
AND AS I STAND HERE AT NIH WE'RE
SEEING AN INCREASE IN
CO-OCCURRING CONDITIONS.
NOT ONLY THAT, CO-OCCURRING
CONDITIONS IN OUR YOUNG GUYS.
WE'RE SEEING AUTISM IN
SIGNIFI
SIGNIFICANT MENTAL HEALTH CRISIS
AND INCREASE IN PREVALENCY AND
WHEN ALL WE CAN DO IS GO TO A
HOSPITAL ON AN EMERGENCY
PETITION WHERE THEY'RE RELEASED
30 MINUTES LATER, THAT'S WHAT WE
GOT TO DO BECAUSE MAYBE THAT'S
WHAT THE PARENT NEEDED AT THAT
TIME.
WHAT ARE WE DOING IN RESPONSE?
AMY WILL BE PUT ON THE SPOT.
WE STARTED TO DO FOLLOW-UPS WITH
THE FAMILIES.
AFTER A CALL FOR WANDERI IING
ELEPMENT OR SOMEBODY IN CRISIS,
IF WE CAN'T RESPOND WE CALL THE
FAMILY.
NOT ONLY DID OFFICERS ARE WE
ASKING DID OFFICERS DO
EVERYTHING WRITE -- RIGHT OR
BETTER AND WHAT WOULD YOU HAVE
WANTED BUT SAYING ARE YOU AWARE
OF THIS ORGANIZATION?
ARE YOU IN THE AUTISM WAIVER
YET?
ARE YOU REACHING OUT TO DDA?
SOMETIMES FAMILIES REPRESENT
THERE.
LAST YEAR IT WAS 600 FOLLOW-UPS.
600 FOLLOW-UPS FROM AMY AND A
CALLING FAMILY SAYING WHAT DO
YOU NEED FROM US?
ALSO, IN THIS ERA WHERE WE
UNDERSTAND LAW ENFORCEMENT
DOESN'T ALWAYS GET IT RIGHT.
WHEN YOU CREATE A CULTURE OF
ACTION AND AWARENESS IT BEGINS
TO BE MORE THAN TRAINING AND
THAT HAPPENS THROUGH A PROCESS
AND I BELIEVE THAT'S WHAT WE'VE
DONE HERE.
IT HAS TO BE ALL INVOLVED.
I WANT TO SKIP FORWARD.
WHAT ARE WE DOING?
ONE INITIATIVE THAT I'M PROBABLY
MOST PROUD OF IS THE WORK WE DO
IN SCHOOLS.
THE WORK WE DO WITH INDIVIDUALS
NAVIGATING AUTISM AND THEIR WAY
TO INDEPENDENCE WHATEVER THAT
MAY BE.
AMY AND A PRESENTING TO
INDIVIDUALS.
THIS IS HOW YOU'RE CREATING THE
WHOLE COMMUNITY UNDERSTANDING
WHAT NEEDS TO HAPPEN.
WE'RE IN THE SCHOOLS AND TALKING
TO INDIVIDUALS SAYING HOW CAN
YOU HAVE A POSITIVE INTERACTION
WITH LAW ENFORCEMENT.
I GET THE CONTROVERSY OF THAT.
POLICE SHOULD KNOW BUT IT HAS TO
BE A TOTAL APPROACH AND ERN HAS
SAID IT HAS TO BE A TOTAL
APPROACH.
WE ARE IN THE SCHOOLS.
IT'S THE BEST PART OF OUR JOB.
IT TRULY IS FROM ELEMENTARY TO
HIGH SCHOOL.
I INVITE IN WHO WOULD EVER WANTS
TO BE THERE WE'LL BE AT DAMASCUS
HIGH SCHOOL THAT'S ALWAYS FUN.
IF YOUR INTERESTED IN WHAT IS
THE PROGRAM DOING, COME OUT AND
SEE.
SOME OF OUR RESOURCES AND EITHER
THINGS WE'RE DOING A TRAFFIC
STOP CLASS AND IN-PERSON TRAFFIC
STOP FOR PASSENGERS AND FOR
DRIVERS.
WE ALSO THERE'S ANOTHER PICTURE
OF THE SCHOOL.
I HAD A YOUNG LADY WITH AUTISM
WHO WONDERED FROM HER HOME AND
STOLE A HORSE.
YOU CAN'T MAKE UP SOME OF THE
STORIES WE HAVE HERE.
AS GOD AS MY WITNESS, MY GIRL IS
LIKE PIPPI LONG STOCKING AND
STOLE A HORSE AND TOOK IT ON A
RIDE.
OFFICERS DID A FANTASTIC JOB BUT
HERE'S WHERE THE OTHER PART
COMES IN.
WE'RE NOT UPSET WITH HER OR HER
MOM.
I SWEAR TO YOU SHE ALSO HAD A
PICTURE OF THIS AND NOT ONLY
STOLE THE HORSE THE SECOND TIME
BUT BROUGHT THE HORSE TO HER
YARD.
WHAT DO YOU DO WITH THAT.
YOU EMPOWER HER AND YOU SAY HEY,
PARK POLICE UNIT THIS YOUNG LADY
LOVE HER SOME HORSES SO MAYBE
SHE NEEDS TO SEE HORSES AND
LEARN ABOUT WHAT NOT STEALING
THEM BUT LEARN THAT WE'RE NOT
MAD AT HER.
SHE'S NAVIGATING HER JOURNEY AND
WE'RE NOT MAD AT HER AND HER MOM
BECAUSE HOW CAN YOU POSSIBLY
KEEP YOUR EYE ON SOMEONE.
MORE OF OUR ACTIONS AND
INTERACTIONS AND LET'S SEE
HERE -- SO AMY AND I AND I KNOW
I'M SHORT ON TIME BUT I HAVE TO
TELL YOU, THE SCHOOL
PRESENTATIONS.
WE HAVE A SCHOOL ASSEMBLY ON THE
IDD UNIT AND I CALL IT LOOKING
OUT FOR THE UNDERDOG.
NOT BECAUSE OF THE NEGATIVE
CONNOTATION OF BEING AN UNDERDOG
BUT YOU COULD BE OR I COULD BE
THE UNDERDOG.
BE KIND.
DON'T BE THE BULLY.
THAT'S A PRESENTATION THAT
COUPLES WITH US HAVING THE
PRESENTATION FOR INDIVIDUALS WHO
HAVE DISABILITIES AND MAKING
SURE THAT EVERYONE KNOWS THEY'RE
NOT ALONE ON THIS JOURNEY.
THERE'S MORE OF OUR TRAFFIC STOP
CLASSES.
THIS YOUNG MAN HAS AUTISM AND IS
ALSO NAVIGATING THIS WORLD AND
HAS WORKED WITH ME AS A
SELF-ADVOCATE BUT APPLYING TO
COLLEGES NOW.
THAT'S PRETTY SAW SOME AND WE'LL
BE HELPING ON THAT ROUTE TOO.
WE WORK DISCLOSURE AND PEOPLE
MAY DISCLOSE INFORMATION TO THEM
WHY IT'S IMPORTANT WHEN HAVE YOU
INTERACTION WITH LAW ENFORCEMENT
AND YOU CAN HAVE AN INDIVIDUAL
APPROACHING YOU IN THE
COMMUNITY.
I THINK I STOOD UP HERE JUST TO
SHOW OFF AND SAY HOW MUCH I LOVE
MY JOB AND HOW PROUD I AM OF THE
OFFICERS IN MONTGOMERY COUNTY.
THAT'S ALL I HAVE.
I LOVE SEEING ALL THE FACES.
THERE'S MY E-MAIL AND YOU CAN
E-MAIL ME AND MYSELF OR AMY WILL
GET BACK TO YOU.
LOVE YOU GUYS.
MWAH.
>> Josh: I WANT TO THANK YOU,
OFFICER REYES AND ALL THE
PRESENTERS.
WE'RE RUNNING BEHIND SO IN AN
EFFORT TO MAKE THAT UP, WE'RE
GOING TO TAKE A SHORT BREAK.
WE'LL START UP AT 10 OF SO FIVE
MINUTES LATE AND HOLD THE UNTIL
AFTER THE AFTERNOON'S PANEL.
SO IF YOU GOT QUESTIONS OR
COMMENTS YOU WANT TO MAKE, JOT
THEM DOWN SO YOU DON'T FORGET
AND SEE YOU BACK IN 10 MINUTES.
THANK YOU ALL FOR COMING BACK SO
QUICKLY AFTER A SHORT BREAK.
WE WANT TO MAKE SURE TO GET TO
THE NEXT PANEL AND HAVE TIME TO
DISCUSS AND SUSAN WILL BE
ORCHESTRATING THE NEXT GROUP.
>> Susan: THANK YOU, SO MUCH.
WE'RE LOOKING FORWARD TO THIS
COMMUNITY PANEL WE'LL BE DOING
THIS IN A Q&A FASHION AND WE
HAVE SOME WONDERFUL PRESENTER
PANELISTS ON THIS PANEL.
SO OUR FIRST PANELIST IS
DR. MARIA MERCEDES A VILA THE
DIRECTOR OF PEDIATRICS AND NEXT
IS LINDSEY NAEDER FOR AUTISM
SPEAKS AND A SIBLING OF AN
AUTISTIC PERSON AND NEXT IS
CAMILLE PROCTOR THE FOUNDER OF
THE PURPLE AUTISM FOUNDATION AND
THE MOTHER OF A SON ON THE
AUTISM SPECTRUM AND NEXT IS IS
AMANDA WROTEN AND THE FINAL PAM
PANELIST FOR THE AUTISTIC
SELF-ADVOCACY NETWORK AND AN
ADVOCATE AND FEEL FREE TO SHARE
ADDITIONAL DETAILS.
I'LL CONDUCT THIS BY ASKING A
SERIES OF QUESTIONS.
WE'LL START WITH THE QUESTIONS.
I'M GOING MARIA, LIBBED SI, CA
MERE AND AMANDA AND GREG.
MARIA, HI.
WHAT ARE THE MOST IMPORTANT LAW
ENFORCEMENT AND CRIMINAL JUSTICE
ISSUES YOU FEEL AFFECT THE
AUTISM COMMUNITY?
>> THANK YOU FOR INCLUDING THE
WORK WE'RE DOING IN VERMONT.
THE FIRST QUESTION AND MOST
IMPORTANT ISSUES OR PRESSING
ISSUES I THINK HEARING THE
PREVIOUS PANEL THEY TALKED ABOUT
THE KEY AREAS WE NEED TO
CONTINUE LOOKING AND THE LACK OF
TRAINING CONNECTED TO CHILD
DEVELOPMENT AND LOOK AT RACIAL
DISPARITY AND THE INTERSECTION
OF HEALTH AND MENTAL HEALTH
DISPARITIES WHEN THEY CONNECT
WITH OTHER SYSTEMS OF
OPPRESSION.
THE OTHER IS LACK OF TRAINING
CONNECTS TO LACK OF KNOWLEDGE OF
SOCIAL AND HISTORICAL CONTEXT IN
OUR SOCIETY.
LOOKING AT THE HISTORY OF
SYSTEMIC RACISM AND ISSUES
IMPACTING OUR COMMUNITIES.
I LIVE IN VERMONT.
THIS IS ONE OF THE WHITEST
STATES IN THE COUNTRY AND IT'S A
SMALL STATE.
WE ALL KNOW EACH OTHER WHEN WE
WORK IN LAW ENFORCEMENT LIKE I
DO AND SOMETIMES I HEAR PEOPLE
SAY IN VERMONT, WHAT IS
HAPPENING IN THAT STATE DOESN'T
HAPPEN HERE.
THIS IS IMPORTANT TO KEEP IN
MIND BECAUSE IT DOESN'T MATTER
WHETHER WE'RE IN VERMONT OR MORE
DIVERSE OR LARGER STATE IN THE
COUNTRY, EVERYBODY HAS TO HAVE
KNOWLEDGE ABOUT THAT TOOK PLACE
THAT IS IMPACTING THE COMMUNITY
AND IMPORTANT TO HIGHLIGHT
RELATED TO EDUCATION AND WORK
ING WITH FAMILIES AND OTHER IDD
WE HEAR CONSTANTLY FAMILIES ARE
EAGER TO SHARE THEIR STORIES AND
EXPERIENCES INTERACTING WITH LAW
ENFORCEMENT AND I THINK THAT'S
SOMETHING WE NEED TO CONTINUE
DOING HEARING THE VOICES OF THE
COMMUNITIES IN A MEANINGFUL WAY
AND AFFECT CHANGE AND IMPROVE
SYSTEMS CONNECTED THOSE
EXPERIENCES.
THANK YOU FOR THE FIRST
QUESTION.
>> THANK YOU SO MUCH, MERCEDES.
NEXT TO LINDSEY AND IF YOU NEED
ME TO REPEAT THE QUESTION JUST
ASK.
>> WE KNOW THE HIGHEST PROFILE
CASES -- THANK YOU, SUSAN AND
COMMITTEE.
WE KNOW FOR SURE THE HIGHEST
PROFILE CASES MAKE THE NEWS BUT
AT AUTISM SPEAKS OUR AUTISM
RESPONSE TEAM WHICH IS OUR AND
REFERRAL RESOURCE FIELDS
THOUSANDS OF REQUESTS SEEKING
SAFETY RESOURCES EVERY SINGLE
YEAR.
THE TOP NEEDS THAT WE SEE WITH
TO THE REQUESTS VERY FREQUENTLY
INVOLVE THE NEED FOR FIRST
RESPONDER TRAINING RESOURCES.
THE MOST COMMON REQUEST ARE FROM
PARENTS AND CAREGIVERS ASKING
THE QUESTION IN MY ZIP CODE ARE
THE FIRST RESPONDERS TRAINED
AND DO THEY KNOW ABOUT AUTISM
AND IF THEY'RE LUCKY THEY LIVE
IN A COUNTY AND HAVE OFFICER
REYES AT THEIR DISPOSAL BUT
OFTEN THEY DO NOT.
PROGRESS HAS BEEN MADE.
WE'RE SEEING PROMISING PRACTICES
AND BEST PRACTICES POPPING UP
BUT OFTEN LED BY ADVOCATES AND
INDIVIDUALS PARTIAL NATALLY
COMMITTED MEMBERS AND COMMUNITY
ORGANIZATION, MY COLLEAGUES
DOING GREAT WORK.
WE HAVEN'T SEEN IT SCALED TO
REPORT MY TEAM IS ANSWERING FROM
EVERY ZIP CODE AND THERE ARE
STANDARDS AND TRAINED OFFICERS
IN THE COMMUNITY.
>> THANK YOU.
CAMILLE PROCTOR.
>> FOR ME, THE MOST PRESSING
ISSUE IS THE KILLING OF BLACK
PEOPLE BY THE HANDS OF THE
POLICE.
OFFICER REYES, NO OFFENSE,
YOU'RE A GEM.
IF I COULD FEED YOU AFTER
MIDNIGHT AND YOU'D MULTIPLY I
WOULD BUT UNTIL WE ADDRESS THE
SYSTEMIC RACISM WE CANNOT
PROTECT THESE VULNERABLE PEOPLE
AT RISK DAILY BECAUSE OF THE
COLOR OF THEIR SKIN.
THEN IT'S COMPOUNDED BECAUSE
THEY ARE AUTISTIC AND HAVE
SENSORY ISSUES AND A MYRIAD OF
OTHER THINGS AND WE KEEP SAYING
TRAIN THE POLICE AND I DO
RESPECT THE POLICE BUT I THINK
SOME OF THE MONEY TRAINING THE
POLICE YOU SHOULD THROW AT THE
GRASSROOTS ORGANIZATIONS IN THE
COMMUNITIES TRAINING FAMILIES
AND WE NEED TO TRAIN THESE BLACK
AND BROWN PEOPLE HOW TO INTERACT
WITH THE POLICE.
NO ONE'S TALKED ABOUT THAT.
WE KEEP TALKING ABOUT TRAINING
POLICE.
THEY HAVE THAT AVAILABLE TO
THEM.
IT'S BEEN AVAILABLE TO THEM
FOREVER WEATHER OR NOT THEY'RE
UTILIZING IT THAT'S ON THEM.
ALL I KNOW IS THAT MAIN WAS
WALKING HOME FROM THE STORE FIT
IN A DESCRIPTION AND GOT TASED
AN ANOTHER MAN GOT KILLED IN HIS
OWN HOUSE.
THE PEOPLE LISTENING TO THIS AND
IN THIS ROOM, YOU ALL NEED TO
COME TOGETHER AND FIGHT TO HAVE
CRISIS INTERVENTION UNITS IN ALL
YOUR COMMUNITY BECAUSE POLICE
AREN'T CRISIS
INTERVENTIONALISTS.
THAT'S MY STATEMENT.
>> THANK YOU.
IT'S NOT THE MOUNTAIN BUT THE
PEBBLES AND IT'S NOT ONE THING,
IT'S NOT LAW ENFORCEMENT
TRAINING OR 9-8-8 ALL THE THINGS
WORK IN UNISON TOGETHER BECAUSE
A RISING TIDE LIFTS ALL BOATS.
FOR ME IT'S LOOKING AT THOSE
THINGS AND UNDERSTANDING
INDIVIDUALS OF AUTISM ARE SEVEN
TIMES MORE LIKELY TO BE VICTIM
OF A CRIME, 12 TIMES MORE LIKELY
TO BE INVOLVED IN THE CRIMINAL
JUSTICE SYSTEM WITHOUT INTENT
BEFORE WE ADD A RACIAL COMPONENT
TO CAMILLE'S POINTS.
IT'S THE TRAINING AND THE
CULTURE AROUND IT.
IS MY HUSBAND IS A POLICE
OFFICER AND I WAS ON A PANEL AND
I'M ON TO THE SPECTRUM AND WHEN
I HAD TO THE MOST PREPARED
PERSON IN FRONT OF ME BUT WHEN
WE STARTED DOING AUTISM-INFORMED
APPROACH A SINGLE MELT DOWN
CHANGED AND THE INFORMATION AND
CULTURE BUILT AROUND IT WAS SO
POWERFUL FOR US AS A FAMILY AND
I KNOW IT'S JUST ONE EXPERIENCE
OF AUTISM BUT IT CAN'T BE JUST
ONE ANSWER WITH JUST ONE
TRAINING OR ONE NUMBER OR JUST
ONE THING WE'RE LOOKING AT.
IT HAS TO BE CAMILLE'S POINT
ABOUT BRINGING IN RACIAL
DISPARITIES AND ALL THE THINGS
TO GET US THERE.
>> Susan: THANK YOU.
GREG ROBINSON.
>> MANY TIMES THE REAL SAFETY
RISK IS POSED AND ONE WAY TO
MINIMIZE THE VIOLENCE IS BY
LIMITING THE INTERACTION WITH
POLICE.
WHEN THERE ARE PUTTING IN PLACE
ALTERNATIVES TO POLICE FOR
BEHAVIORAL CRISES CAN BE A
CRITICAL ROLE IN THE
CONVERSATION.
WE ALSO HAVE OUTSTANDING
QUESTIONS ABOUT CIT AND
CO-RESPONSE MODELS WHETHER THEY
ACTUALLY DO THEY PRODUCE THE USE
OF FORCE IN POLICE INTERACTION.
>> Josh: MOVE THE MIC CLOSER TO
YOU.
>> WE HAVE QUESTIONS WHETHER CIT
AND CO-RESPONSE MODELS REDUCE
THE INCIDENTS OF USE OF FORCE.
WE WHERE POLICE ARE PRESENT ONE
OF THE FUNDAMENTAL RULES OF
POLICE, AGAIN, OFFICER REYES YOU
DO SEEM AMAZING, I DO RESPECT TE
WORK YOU DO.
I ALSO WANT TO KNOW YOU ARE HERE
ARMED BECAUSE YOU'RE ON DUTY AND
THAT IS PART OF POLICE PRESENCE
WHEN YOU'RE PRESENT ON A SCENE
THE POSSIBILITY OF USE OF FORCE
IS PRESENT WITH YOU.
THAT'S SOMETHING THAT I THINK WE
DO NEED TO ENGAGE WITH WHEN WE
APPROACH THESE AND TALK ABOUT
HOW TO FIND ALTERNATIVES TO
POLICING.
ANOTHER THING I WANT TO RAISE
HERE IS ANOTHER ISSUE THAT HAS
BEEN RAISED TO US BY THE
COMMUNITY AROUND POLICING AND
SAFETY IS THE USE OF IDD MARKERS
AND DATABASES AS A FORM OF
DISCLOSURE AND THERE'S PRIVACY
CONCERNS RAISED HOW THE
DATABASES ARE MAINTAINED AND
USED BY STATE AGENCIES IB
ADDITION TO THE FACT WHEN IT'S
AN I.D. MARKER IT'S AN AUTOMATIC
DISCLOSURE EVERY TIME THEY
PRESENT THEMSELVES IN A
COMMUNITY AND SHOW I.D.
GIVEN MANY IN THE COMMUNITIES
ARE ALSO ON THE LGBTQ SPECTRUM
AND CAN INFORMATION CAN BE USED
TO DENY RIGHTS.
THIS HAS BEEN RAISED TO OUR
ORGANIZATION THREE MANY VENUES
AND SOMETHING WE'RE ACTIVELY
LOOKING AT RELATED TO LAW
ENFORCEMENT AS WELL.
>> Susan: WHAT YOUR ORGANIZATION
DOING TO ADDRESS THESE ISSUES.
MARIA.
>> WE WERE ABLE TO A TRAINING
MODEL THAT WAS CREATED FOR
HEALTH AND MENTAL HEALTH
PROVIDERS INTO WHAT IS THE FAIR
AND PARTIAL POLICE TRAINING IN
THE STATE OF VERMONT.
THE MODEL INCLUDES THE HISTORY
OF SYSTEMIC RACISM LOOKING AT
ISSUES OF HAVING DISABILITY AND
BEING FROM A RACIALLY DIVERSE
BACKGROUND AND LOOKING AT CHILD
DEVELOPMENT AND WORKING WITH LAW
ENFORCEMENT THERE WAS A LACK OF
KNOWLEDGE WITH THE FEDERAL LAWS
RELATED TO ACCESSIBILITY AND
ORDER 1316 THE LANGUAGE ACCESS
LEGISLATION RELATED TO PROVIDING
INTERPRETATION AND TRANSLATION
SERVICES FOR LIMITED ENGLISH
PROFICIENT POPULATION AND WE
INCORPORATE THE TRAINING THROUGH
OR WORK AND WERE ABLE TO TRAIN
ALL LAW ENFORCEMENT AGENCIES IN
THE STATE OF VERMONT AND
COLLECTED PRE AND POST DATA
RELATED TO THE TRAINING WE
OFFICER.
SEVEN YEARS AGO WE CREATED A
PROGRAM WITH COMMUNITY LEADERS
TO WORK WITH LAW ENFORCEMENT AND
PROGRAMS TO BE ABLE TO BRIDGE
THE CULTURAL DIVIDE AND REDUCE
AND PREVENT ARRESTS IN MANY
COMMUNITIES WE WORK WITH.
FINALLY, WE ALSO INTERVIEWED
MORE THAN 100 COMMUNITY MEMBERS
RELATED TO THEIR EXPERIENCES
WITH LAW ENFORCEMENT AND THE
CRIMINAL JUSTICE SYSTEM
INCLUDING THE COMMUNITY JUSTICE
CENTERS IN OUR STATE AND WHAT WE
FOUND WAS A LACK OF KNOWLEDGE
FROM THE COMMUNITY AROUND THE
ROLE OF LAW ENFORCEMENT AND THE
LIMITATIONS OF LAW ENFORCEMENT
INCLUDING NOT UNDERSTANDING
JUVENILE LAW FROM MANY OF THE
COMMUNITIES AND FROM LAW
ENFORCEMENT A LACK OF KNOWLEDGE
RELATED TO THE COMMUNITIES THE
CULTURAL PERSPECTIVES OF THE
COMMUNITY WE SERVE AND
DISCONNECT AND CREATE A BIGGER
DISCONNECT BETWEEN COMMUNITIES
AND LAW ENFORCEMENT.
THANK YOU.
>> THANK YOU.
>> NEXT, LINDSEY.
>> WE'RE TALKING ABOUT LAW
ENFORCEMENT AGENCIES AND
OFFICERS AND THAT IS ABSOLUTELY
SN
SOMETHING WE NEED TO ADDRESS
WEATHER THROUGH CRISIS
INTERACTIONS.
WE SAW THE STATISTICS WHERE IT'S
FIVE TIMES OR SEVEN TIMES MORE
LIKELY TO INTERACT WITH LAW
ENFORCEMENT BUT WE NEED TO THINK
ABOUT SCHOOL RESOURCE OFFICERS
AND EMERGENCY ROOM PERSONNEL,
EMTs, 9-1-1 TELECOM OPERATORS
AND I'M SURE EVERY PERSON HAS
ANOTHER SECTOR POPPING IN THEIR
MIND THAT HAVE TO OPERATE FOR
OUR COMMUNITY AS FIRST
RESPONDERS.
WE HAVE TO MAKE SURE TO HAVE
RESOURCES AND TOOLS TO OVER ALL
UNDERSTANDING AROUND AUTISM BUT
ALSO PUTTING THAT THROUGH THE
LENS OF SAFETY NEEDS.
>> Susan: CAMILLE.
>> ONE THING OUR ORGANIZATION
AND ENCOURAGE THOSE IN LAW
ENFORCEMENT TO PARTICIPATE UP
OUR PROGRAMMING, TO BE
VOLUNTEERS AND WE HAVE A PROGRAM
AND WE'LL PROBABLY START IT
AGAIN WHERE WE HAD LAW
ENFORCEMENT AND YOUTH WORK
TOGETHER AND WE WANTED TO
HUMANIZE OUR BOYS AND GIRLS.
WE WANTED THEM TO BE PEOPLE TO
THESE OFFICERS.
WE DOESN'T WANT THEM TO BE A
LIST OF MAY NOT MAKE EYE CONTACT
AND DO NOT DO THIS AND KNOW THE
INDIVIDUALS SO WHEN THEY WERE
OUT AND THEY DON'T LOOK AT THE
LIST OF THIS THAT BUT THE LOD
BODY LANGUAGE AND GIVE LAW
ENFORCEMENT A BETTER IDEAL
AUTISM IS A LINEAR AND NOT A ONE
SIZE FITS ALL AND STOP BEING
REACTIONARY.
>> IT'S NOT ONE THING BUT ALL
THE THINGS.
AND LEANN ARE LEAD PROVIDERS AND
IT'S AN INTERESTING EXPERIENCE
BECAUSE WE WORK WITH 60 SITES
ACROSS THE COUNTRY AND MANY ARE
LAW ENFORCEMENT AGENCIES AND
THEY EXPERIENCE THE DIFFERENCE
IN COMMUNITY WHERE THEY HAVE
TROUBLE GETTING TRACKING DEVICES
OUT BECAUSE OF THE MISTRUST.
WE'RE TRYING TO BRIDGE THE GAP
AND BUILD A TRUE COMMUNITY OF
PRACTICE.
IF YOU ASK ABOUT ONE SENTENCE
WE'RE TRYING TO MAKE SURE
EVERYONE GOES HOME SAFE AT NIGHT
WHETHER IT'S OFFICER REYES OR
CAMILLE'S SON OR ME OR MY
HUSBAND.
WE'RE TRYING TO MAKE SURE
EVERYBODY GOES HOME SAFE AT
NIGHT BECAUSE THAT'S WHAT
COMMUNITY MEANS AND WHAT WE WANT
TO BE A PART OF.
>> THANK YOU.
>> Susan: GREG.
>> SO WE ARE WE CAN GET YOU IN
THROUGH THE COALITIONS WE
PARTICIPATE IN.
BOTH WITH THE DISABILITY
COMMUNITY THROUGH INVERSION AND
CONSTITUENTS WITH DISABILITIES
AND THE LESION OF CONFERENCE.
A LOT OF OUR WORK IS AIMED AT
BRIDGING THE DISABILITY RIGHTS
AND DISABILITY JUSTICE
COMMUNITIES MAKE SURE WE ARE
REALLY RUN SAME DIRECTION ON
ISSUES OF POLICE VIOLENCE AND
MAKING SURE THAT THE COMMUNITY
IS WELL REPRESENTED AND WE'RE
ADDRESSING THE ISSUES AND WE ARE
MAKING SURE THAT RESPONSE
SYSTEMS ARE FULLY ACCESSIBLE TO
OUR COMMUNITIES INCLUDING SPEECH
OR MAY NEED ALTERNATIVES TO
CONTACT.
IN ADDITION, WE PRODUCE
RESOURCES FOR COMMUNITY MEMBERS
AROUND THE LEGAL SYSTEM AND
POLICE VIOLENCE AND WE HAD
RESOURCES ON THE CRIMINAL LEGAL
SYSTEM BROADLY AND POLICE
VIOLENCE AND THE PIPELINE AND
AUTISM AND SAFETY AND SEXUAL
VIOLENCE.
THIS IS AN AREA WHERE WE'RE
ALSO -- WE ALSO PUT PRIORITY IN
PRODUCING RESOURCES THAT CAN
EDUCATE OUR COMMUNITY BOTH ABOUT
THE ISSUES BROADLY AND WAYS TO
ADVOCATE FOR NEEDS.
>> Susan: THANK YOU.
AND MY THIRD QUESTION FOR THE
PANEL AND WE'LL START WITH
MERCEDES IS WHAT ARE SOME WAYS
YOU FEEL THE FEDERAL GOVERNMENT
OR STATE AND LOCAL AGENCIES AND
ORGANIZATIONS CAN HELP ADDRESS
THESE ISSUES?
>> THANK YOU.
I WANT TO START BY SAYING
LANGUAGE MATTERS AND IN
INTERACTIONS WITH LAW
ENFORCEMENT AND OUR WORK
TRAINING PROCEDURES INCLUDING
LANGUAGE TO INCLUDE DISABILITY
AND MENTAL HEALTH CONDITIONS AND
IMMIGRATION STATUS THAT ARE
OPPRESSIVE FOR THE COMMUNITY WE
SERVE.
LANGUAGE IS ONE THEIR KEY AREAS
THAT NEEDS TO BE ADDRESSED AND
UPDATED TO BE INCLUSIVE.
I HAVE GONE WITH FAMILIES WHO
HAVE CHILDREN WITH SPECIAL NEEDS
AND WITH ASC AND HERE WITH THE
CRIMINAL JUSTICE USING A WORD
THAT'S OPPRESSIVE FOR THE CHILD.
THAT BREAKS THE CONNECTION
BETWEEN THE COMMUNITY AND LAW
ENFORCEMENT.
WE TALK ABOUT TRAINING.
I WOULD SAY I'M AN ADVOCATE FOR
BEST PRACTICE TRAINING MODEL
THAT BUILDS ON KNOWLEDGE EVERY
YEAR.
I'VE SEEN THE TRAINING MODEL
HAVE THE SAME EVERY YEAR SO
NOTHING IS BEING LEARNED NEW
WITH THIS MODEL.
ADVOCATING FOR FUNDING THAT
ENCOURAGES PARTNERSHIPS WITH
COMMUNITIES TO BE ABLE TO HEAR
THE VOICES OF THE COMMUNITIES
AND FINALLY I WOULD SAY WE NEED
LEADERSHIP BUY-IN NOT IN WORDS
BUT IN ACTIONS.
WE NEED ACTIONS FROM LEADERSHIP
TO ADVOCATE FOR CHILDREN AND WE
ALSO NEEDLECATION -- NEED
FUNDING ALLOCATED TO FUND WORK
IN THIS COMMUNITY.
>> WE SUPPORT THE LAW AND THE
NEW PROGRAM CAN CONTINUE AND
HOPEFULLY IN THE FUTURE EXPAND.
WE LIKE TO SEE SIMILAR EFFORTS
INCLUDE MORE COMMUNITY PARTNERS
AND MORE OF THE PROMISING
PRACTICES THAT THE RECIPIENTS OF
THOSE FUNDING STREAMS ARE
RECEIVING.
WE DO SEE A GREAT OPPORTUNITY
FOR THE INTERSECTIONAL WORK
WHETHER WITH MENTAL HEALTH
PARTNERS THROUGH THE RACIAL LENS
AND OTHER DISABILITIES THAT CAN
COME TOGETHER AND WHEN YOU'RE
CONVENING A STAKEHOLDER GROUP
YOU CAN IDENTIFY UNIVERSAL
PRACTICES THAT CAN BE APPLIES TO
THE CRISIS INTERVENTION TRAINING
MODEL THAT COULD THEN BE APPLIED
AND SCALED NATIONALLY.
YOU CAN HAVE AUTISTIC PEOPLE,
THEIR FAMILIES AND CAREGIVERS
BRING THEIR SAFETY PLANS.
WE'VE GOT GREAT RESOURCES.
YOU CAN DOWNLOAD TO CREATE
CRISIS PLANS AND CREATE SAFETY
PLANS THAT WILL GROW ALONG WITH
YOU THROUGHOUT THE LIFE SPAN AND
THE CHILD'S NEEDS WON'T BE THE
SAME AS ADULT NEEDS AND YOU
DON'T OUTGROW YOUR AUTISM AND
THOUGH YOUR CHILD HAS BEEN
RAISED IN A COMMUNITY AND FEEL
COMFORTABLE THE LAW ENFORCEMENT
KNOWS THEM AND MAYBE THEY'LL
DROVE OR BE LIVING INDEPENDENTLY
OR HAVE A TOUGH TIME IN A
GROCERY STORE.
PROMOTING OPPORTUNITIES THATHILL
THOSE COMMUNITY-CENTERED
PROGRAMS WILL SORT OUT SOME
OPPORTUNITIES WE NEED TO SEE IN
LEVERAGING THESE INTERSECTIONAL
PROGRAMS.
>> Susan: THANK YOU.
CAMILLE.
>> I THINK IT'S VERY IMPORTANT
WE WORK WITH COMMUNITY
ORGANIZATION.
I ALSO WOULD LIKE TO GENTLY
REMIND PEOPLE THAT THE
DISABILITY MOVEMENT WAS BIRTHED
FROM THE CIVIL RIGHTS MOVEMENT.
FOR SOME REASON WE'VE FORGOTTEN
ALL ABOUT THAT AND FORGOT ABOUT
THE SECTION OF PEOPLE THAT ARE
BLACK AND THEY'RE NOT SERVED AND
WE KEEP FORGETTING ABOUT THEM
AND I'M NOT TRYING TO CHANGE THE
SUBJECT BUT IT'S VERY IMPORTANT
WE TAKE A LOOK AT OURSELVES AND
GO BACK TO WHERE DID WE COME
FROM, AGAIN, WE CAME FROM THE
CIVIL RIGHTS MOVEMENT.
THERE'S NO REASON WHY A BLACK
CHILD IS BEING BORN RIGHT NOW
AND HIS FATHER OR MOTHER WILL BE
TALKING TO HIM AS AN INFANT
TELLING HIM WHAT HE CANNOT DO IN
THIS UNITED STATES.
I THINK THAT IS IMPORTANT WE DO
TAKE A LOOK AT THESE UNDER
SERVED COMMUNITIES AND WORK
TOWARDS CREATING BETTER PROGRAMS
BECAUSE THEY ARE THE ONES WHO
ARE THE MOST ADVERSELY AFFECTED.
YES, I CARE ABOUT EVERYONE'S
LIFE BUT WHEN I TELL YOU
STATISTICALLY PEOPLE WITH
DISABILITIES THAT ARE DEAD
BECAUSE OF A MISUNDERSTANDING
ARE PEOPLE OF COLOR.
VERY RARELY AND WHEN YOU DO HEAR
ABOUT SOMEONE THAT IS NOT A
PERSON OF COLOR, IT IS
MAGNIFIED.
THAT MAKES ME ANGRY OFTEN
BECAUSE FOR THAT ONE CHILD
THERE'S PROBABLY 10 BLACK OR
BROWN CHILDREN THAT EXPERIENCE
SOMETHING SIMILAR OR WORSE.
>> Susan: THANK YOU, CAMILLE.
AMANDA.
>> ALSO, DR. DANIELS THIS CHAIR
IS A NICE START.
IF YOU ASK ME WHAT THE CAN DO,
IT'S NICE TO BE INCLUDED IN
THESE CONVERSATIONS.
WE GREATLY VALUE THIS AND THE
RECIPIENTS WOULD LOVE TO
PARTICIPATE MORE.
IT'S A GREAT PLATFORM TO THANK
YOU.
THERE'S A COUPLE AREAS AND I
THINK WE HEARD THEM THROUGHOUT
THE DAY.
ONE IS A GENERAL LACK OF DATA.
I COME FROM A PR BACKGROUND.
I'M PREPPING TALK POINTS AND
LOOKING FOR DATA AND IT DOESN'T
EXIST.
I ASK MY HUSBAND WHO'S A POLICE
OFFICER AND SAID IT'S NOT LISTED
ON THE UNIFORM PRIME REPORTING.
WE LOOK AT A ONE IN 36 DIAGNOSIS
RATE AND LOOK AT REPORTING, WE
SHOULD GET DISABILITY AND AUTISM
RELATED INFORMATION BUT IF IT'S
NOT IN UNIFORM CRIME REPORTING
WE'RE NOT GOING TO SEE IT
BECAUSEFUL -- BECAUSE UNTIL
THERE'S SUPPORT TO GET THE DATA
WE WILL NOT HAVE THAT DATA.
BEYOND THAT, FUNDING STATE
DEVELOPMENT CRISIS UNITS WE
TALKED ABOUT THAT BUT I WANT TO
ECHO THAT ALSO WITH WE HAVE TO
CONTINUE THAT COMMUNITY OF
PRACTICE.
THE FOUNDATION HAD A CALL FOR
SERVICE OVER THE HOLIDAYS THAT
RELATED IN A FATAL SHOOTING THAT
WAS NOT AUTISM RELATED BUT NOT A
MENTAL HEALTH PHONE CALL AT THE
TIME THE CHIEF LISTED IN THE
PAPER CALLED FOR THE THINGS
THROUGH THE COMMUNITY SERVICE
BOARD AND THEY DIDN'T COME TO
HELP BOUGHT THEY DIDN'T FEEL
QUALIFIED.
THAT KICKS THE BALL BACK IN
THEIR COURT AND WHAT I MEAN BY
IT'S NOT ONE THING, IT'S ALL OF
THE THINGS.
SO IF WE ONLY DID A MOEM MOBILE
HEALTH CRISIS UNIT AND DON'T
TRAINING OFFICERS, WHAT HAPPENS
WHEN THAT FALLS A PART?
AND LIKE EVERYBODY ELSE, WE NEED
MORE MONEY.
EVERYTHING IS UNDER FUNDED NOT
JUST MEANINGFUL TRAINING BUT TO
WORK WITH DEPARTMENTS THAT DON'T
HAVE AN OFFICER REYES TO
IMPLEMENT IT AND GIVE FIM
FAMILIES AN OPPORTUNITY TO KNOW
WHAT TO DO IN A TRAFFIC STOP
WHICH IS STRESSFUL FOR ANYBODY
REGARDLESS OF AUTISM AND
SUPPORTING THINGS LIBE THE SAFE
INTERACTIONS ACT REQUIRING
OFFICERS TO RECEIVE MEANINGFUL
TRAINING THAT INCLUDES AUTISM
SPECIFIC DE-ESCALATION
PRACTICES.
AND THEN THE LAST THING FOR ME
IS 9-8-8 BUT IT'S A TWO-WAY
STREET NOT JUST KNOWING 9-8-8
EXISTS AND HAVING SUPPORT TO
KNOW WHAT TO DO NEXT SO TRAINING
GOES BOTH WAYS.
>> Susan: THANK YOU.
GREG.
>> FIRST, I WANT TO THANK MY
FELLOW PANELISTS FOR RAISING THE
ISSUES WHEN IT COMES TO
TRAINING.
I THINK AT THE DISPATCH LEVEL IS
WHERE A LOT OF DECISIONS ARE
MADE IN TERMS OF WHO AND HOW
THEY RESPOND THAT IMPACT HOW
PEOPLE EXPERIENCE EMERGENCIES
AND THAT CAN RANGE FROM WHETHER
POLICE OFFICERS ARE APPROPRIATE
FOR DISPATCH AND WHETHER SIRENS
ARE APPROPRIATE.
IT'S A CRITICAL PIECE.
I ALSO WANT TO SORT OF BACK UP A
LITTLE BIT AND TALK ABOUT AGAIN
POLICE VIOLENCE IMPACTS PEOPLE'S
ABILITY TO LIVE IN THE COMMUNITY
AND MOVE ABOUT THEIR COMMUNITY
TO INTERACT WITH THEIR COMMUNITY
AND FEEL SAFE.
I -- WE'VE TALKED ABOUT OTHER
CASES.
I WANTED TO MENTION THE CASE OF
CHARLES KINSEY A SUPPORT WORKER
AND RIO SOTO WHERE HE WAS IN A
GROUP HOME AND LEFT THE GROUP
HOME AND THE SUPPORT WORKER
FOUND HIM BUT IN THE MEANTIME
THERE WAS A POLICE REPORT THE
METAL REPORTED IN HIS HAND WAS A
GUN AND WHILE MR. SOTO WAS NOT
HARMED IT WASN'T FOR LACK OF
TRYING THE POLICE SHOT THE CARE
WORKER IN THE LEG ACCIDENTALLY.
I THINK INFORMATION I THINK
AGAIN SPEAKS TO WHO IS PART OF
THE RESPONSE TEAM AND WHAT THEY
KNOW AND HOW THE COMPETENCY IN
DISPATCH AND RESPONSE.
ADDRESSING, WONDERING MAKES ME
WANT TO BACK UP AND TALK ABOUT
COMMUNITY LIVING MORE BROADLY.
WE NEED MORE ROBUST SYSTEM
INCLUDING MORE ROBUST FUNDING
FROM COMMUNITY SERVICES TO
ENSURE PEOPLE HAVE DIRECT
SUPPORT THEY NEED IF THEY NEED
ONE-ON-ONE SUPPORT AND HAVE THAT
SUPPORT AND THAT ITSELF CAN
PREVENT SOME OF THIS.
I THINK WE NEED TO -- ENSURE
PEOPLE HAVE THE RESOURCES THEY
NEED ACROSS SYSTEM WIDE AND THIS
IS A PLACE WHERE WE NEED MORE
FUNDING BUT WE ALSO NEED MORE
FUNDING WHERE THE UNMET NEED
EXISTS AND WE HAVE GAPS AND THE
OTHER THING WE HAVE NOT TALKED
ON THE PANEL AS MUCH AS ABOUT
ACCESS TO JUSTICE BUT I DO THINK
ONE CRITICAL PIECE WHEN WE ARE
TALKING ABOUT JUSTICE SYSTEMS IS
MAKING SURE PEOPLE HAVE THE
RESOURCES THEY NEED FOR
ASSESSMENT AND ACCOMMODATION IF
THEY'RE JUSTICE INVOLVED WHILE
WE GO OVER THE STATISTICS AROUND
PEOPLE IN PRISON AND JAIL,
THERE'S ALSO AN UNDER DIAGNOSIS
PROBLEM IN THE SYSTEMS AND THAT
WE HAVE A PUBLIC DEFENSE SYSTEM
RADICALLY UNDER FUND, UNDER
RESOURCED AND OFTEN DON'T HAVE
TIMES TO GET PEOPLE ASSESSED AND
ACCOMMODATED APPROPRIATELY AND
THAT IMPEDES PEOPLE'S ABILITY TO
DEFEND THEMSELVES IN COURT IF
THEY'RE JUSTICE INVOLVED AND
THAT FOR US IS A HUGE ISSUE.
I WOULD ALSO LIKE TO SAY AS MY
TIME WRAPS UP HERE THAT I THINK
ONE FEAR WE HAVE AROUND
SEGREGATED LEGAL SYSTEMS AND
EVEN WITHIN 9-8-8 THEY DON'T
TRACK TO INSTITUTIONALIZATION.
IF PEOPLE ARE GETTING EMERGENCY
CRISIS RESPONSE AND THAT DOES
NOT BECOME INDEFINITE
HOSPITALIZATION AND ONE LAST
INCIDENT I'LL RAISE HERE I'M A
GAMER SO THIS IS SOMETHING THAT
CAME ON MY RADAR THROUGH VIDEO
GAMES BUT THERE WAS SOMEBODY IN
THE U.K. WHO HACKED AND RELEASED
DEVELOPMENT OF A VIDEO GAME THAT
IS A BIG DEAL AND WAS SENTENCED
TO INDEFINITE SECURE HOSPITAL
CONFINEMENT.
AND THE REASON GIVEN WAS HIS
PROFOUND AUTISM.
THIS IS DUE PROCESS AND THIS IS
A CASE WHERE SOMEBODY DID
SOMETHING I WOULD BE THE BEGIN
TO KNOW HOW TO DO AND HE SAID HE
WOULD DO IT AGAIN AND THAT TO ME
I READ THE LANCET ARTICLE.
I DON'T KNOW HOW THAT MEETS THE
DEFINITION OF PROFOUND AUTISM
AND MAKES ME WORRIED HOW
DEFINITIONS ARE USED.
>>
>> Susan: THANK YOU SO MUCH TO
OUR PANELISTS FOR ANSWERING SOME
OF THESE THOUGHT PROVOKING
QUESTIONS AND LOOK FORWARD TO
INTERACTING WITH YOU IN THE Q&A
AND WITH PREVIOUS PANELISTS
SINCE WE DIDN'T HAVE TIME FOR
Q&A EARLIER.
THANK YOU SO MUCH AND I WILL
TURN IT OVER TO DR. GORDON TO
HELP MODERATE IT AND ALSO HELP
ASSIST.
>> Josh: THANK YOU.
WE'RE GOING TO IT UP FOR
QUESTIONS OR COMMENTS FROM
MEMBERS OF THE COMMITTEE.
THANKS, EVERYONE WHO PRESENTED
TODAY.
>> IT WAS A RICH CONVERSATION
GIVING ME A LOT OF TO THINK
ABOUT INCLUDING MANY IN THE
COMMITTEE.
I LOVE THE IDEA OF A PROACTIVE
APPROACH VERSUS REACTIVE
APPROACH AND I WANT TO QUOTE YOU
AND SAY IT'S NOT ONE THING BUT
ALL THE THINGS.
IN THINKING ABOUT THAT THERE'S
CONVERSATION ABOUT TRAINING
OFFICERS WHICH IS GREAT.
EVERYBODY HAS SAID THAT'S A
GREAT THING BUT HOW -- WHAT ARE
THE OTHER STEPS WE NEED TO TAKE?
WE HEARD A LOT OF THINGS SHARED
HERE.
MY QUESTION TO -- I WOULD LOVE
TO HEAR FROM EVERYONE.
I DON'T KNOW IF THERE'S TIME BUT
WHAT'S THE KEY TAKEAWAYS YOU
WANT INDIVIDUALS AND FAMILIES TO
KNOW AS THEY LEARN ABOUT
NAVIGATING THE CRIMINAL JUSTICE
SYSTEM?
IF SOMEONE IS JUST STARTING TO
THINK ABOUT MY SON WHO IS NOW
20, ONE THING I DID FOR HIM WAS
I HAD AN IEP GOAL AND HE LEARNED
HOW TO TAKE HIS I.D. OUT OF HIS
WALLET AND LITERALLY SAY, BEFORE
HE TOUCHES IT, I HAVE MY I.D.
CAN I SHOW YOU.
THIS IS SOMETHING WE DID
INDIVIDUALLY.
WE NEED AN APPROACH ALL OVER BUT
I'M THINKING ABOUT INDIVIDUALS
FAMILIES WHO NEED HELP IN THIS
MOMENT.
SO THINKING ABOUT WHAT YOU
SHARED TODAY AND ALL THE AMAZING
RESOURCES AND THE THOUGHTS WHAT
IS ONE KEY TAKEAWAY THAT
INDIVIDUALS AND FAMILIES CAN
UTILIZE RIGHT NOW.
>> Josh: THANKS FOR THAT
QUESTION AND I'LL USE THE
CHAIR'S PREROGATIVE TO ASK
SPECIFIC PEOPLE TO ANSWER THAT
AND LAURIE CAN YOU ANSWER IN TWO
SENTENCES?
IF NOT, THAT'S FINE.
>>
>> TO ANSWER YOUR QUESTION
QUICKLY, EVERYONE KNOWS I'M
LONGWINDED SO THIS IS
CHALLENGING FOR ME TO LET YOU
KNOW.
THAT'S ALREADY MY TWO SENTENCE.
WHAT WE DO AND I'M WITH YOU.
MORE NEEDS TO THE DONE IN THE
INTERACTIONS WITH INDIVIDUALS
HAVING THAT INTERACTION WITH LAW
ENFORCEMENT.
WE TALK ABOUT SELF-DISCLOSURE IF
YOU HAVE AN INTERACTION WITH LAW
ENFORCEMENT WHAT SHOULD YOU DO?
CALM HANDS AND HERE'S THE THING,
I GET PUSHBACK ON WHY ARE YOU
TEACHING INDIVIDUALS IT SHOULD
BE OFFICERS AND IT HAS EVERYONE.
THE CAREGIVER, POLICE OFFICER,
EVERYBODY HAS TO BE A PART.
WHATEVER YOU WANT TO DO, LET'S
DO IT.
I'M HAPPY TO INSKRVITE YOU TO C
HEAR ME SPEAK TO A GROUP AND
COME WATCH WHEN WE PRESENT TO
INDIVIDUALS ABOUT HAVING
INTERACTIONS WITH LAW
ENFORCEMENT.
>> Josh: MARIA I DON'T KNOW IF
YOU'RE DOING THAT IN VERMONT.
DO YOU HAVE SOMETHING TO ADD?
>> I WOULD SAY WHAT WE GENERALLY
TELL COMMUNITIES AND FAMILIES IS
TO BE ABLE TO CONNECT
IMMEDIATELY WITH AN ADVOCATE.
MANY TIMES WHEN THERE'S
STRESSFUL SITUATIONS IT'S HARD
FOR FAMILIES TO BE ABLE TO MAKE
A DECISION IN THE MOMENT.
BE ABLE TO REACH OUT TO ONE OF
US AND BROKERS AND SOMEBODY IN
THE COMMUNITY WORKING WITH LAW
ENFORCEMENT TO MAKE THAT BRIDGE
SO WE CAN ADVOCATE ON THEIR
BEHALF BECAUSE THE STRESSFUL
SITUATIONS ARE HARD FOR FAMILIES
WE GET CALLS ALL THE TIME.
>> Josh: ANYONE WHO HAS A STRONG
ONE SENTENCE ANSWER?
>> IT'S LEANN WIN THE ARC, U.S.
ONE THING WE'VE BEEN TALKING
ABOUT IS CREATING A
CERTIFICATION PROGRAM FOR
JUSTICE ADVOCATES THAT WOULD BE
PART OF OUR NETWORK.
THERE COULD BE SOMEONE THERE YOU
WERE TALKING TO TALK ABOUT THE
ADVOCACY IN THE FRONT AND THAT'S
SOMETHING WE NEVER HAD IN THE
COUNTRY AND IT'S ABOUT TIME WE
GET MORE ORGANIZED ON THAT FRONT
SO I JUST WANTED TO MENTION
THAT.
>> Josh: I'LL MOVE ON FOR NOW
AND WE CAN COME BACK IF THERE'S
TIME AT THE END.
I'LL TURN TO IVANOVA FOR
COMMENT.
>> THIS IS IVANOVA SMITH AND MY
COMMENT IS FOR OFFICERS, HAVE
YOU HAD POSITIVE INTERACTIONS
WITH AUTISTIC PEOPLE AND ARE
THERE WAYS OFFICERS COULD HELP
AUTISTIC PEOPLE SOLVE THE
PROBLEM AND ONE EXAMPLE IS I
ACTUALLY HAD A POLICE INTER
ACTION A POLICE OFFICER WAS
CAUGHT DRAGGING ME AROUND AND
YELLING AT ME AND THAT WAS
SCARY.
I HAD A DIFFERENT INTERACTION
THAT WAS POSITIVE AND THEY WERE
ABLE TO HELP ME GET TO MY NEXT
BUS STOP AND I HAD A MELTDOWN
BECAUSE I MISSED MY BUS AND
INSTEAD THE OFFICER TRYING TO
ARREST ME SAID I CAN HELP YOU
GET TO THE NEXT BUS STOP.
I'LL DRIVE YOU TO YOUR NEXT BUS
STOP.
THAT WAS REALLY HELPFUL.
I'M WONDERING IF THERE'S MORE
WAYS OFFICERS CAN TROUBLE SHOOT
WITH AN AUTISTIC INDIVIDUAL AND
HELP THEM WHEN THEY'RE IN THAT
MELTDOWN AND SAY MAYBE THERE'S A
SOLUTION.
LET ME TALK SLOWLY TO THE PERSON
AND SAY CAN I HELP YOU OR WHAT'S
THE PROBLEM HERE AND TRYING TO
THINK OF A POSITIVE WAY TO HELP
THE PERSON AND I'VE HAD AN
OFFICER DO AND THAT IT'S BEEN
VERY POSITIVE.
I'M WONDERING IF THERE'S MORE
WAYS WE CAN DO THAT.
ALSO TO TRAIN OFFICERS IN
NON-SPEAKING COMMUNICATION AND
BEHAVIOR COMMUNICATION BECAUSE
THAT'S WHAT TRAINING IS LOOKING
WHEN HAVE YOU INDIVIDUALS THAT
ARE NON-SPEAKING AND CANNOT TELL
YOU WHAT THE NAME IS OR THINGS
LIKE THAT LIKE WE SHOULD BE ABLE
TO TRAIN OFFICERS AND BEING ABLE
TO KNOW A PERSON IS NON-SPEAKING
AND GET HOLD OF THE CAREGIVER.
THANK YOU.
>> Josh: THANK YOU.
>> HERE'S THE THING.
I'LL BE QUICK.
WE HAD POSITIVE OVERACTIONS AND
TRAINED OVER 5,000 OFFICERS OVER
THE COURSE OF 20 YEARS BUT IF
YOU EVER HAVE AN INTERACTION AND
REACH OUT WHY DID THIS HAPPEN,
I'M HERE FOR YOU.
YOU CAN REACH OUT.
MY E-MAIL IS RIGHT THERE AND
TALK ABOUT WHAT HAPPENED THE
GOOD AND BAD.
I'LL TAKE WHAT YOU SHARE AND
PASS IT ON.
PROMISE.
THANK YOU.
AMANDA AND GREG.
>> I VALUE YOU SHARING THAT SIDE
TO MAKE THE WORLD BETTER.
FROM THE NON-SPEAKING
PERSPECTIVE IF YOU GO TO THE
RESOURCES ON THE WEBSITE FOR THE
MEETING THE AUTISM SOCIETY OF
AMERICA HAS OUR FIRST RESPONDER
BOARDS UP IN ENGLISH AND SPANISH
AND THEY'RE FREE.
IF YOU'RE A LAW ENFORCEMENT
OFFICER ON THE PHONE AND SEND
THEM THE LINK TO THE FILE
BECAUSE IT'S A GREAT TOOL TO
PULL OUT AND IT SUPPORTS MANY
NEEDS.
IT COULD BE SOMEBODY WITH
ALZHEIMER'S, SOMEBODY WITH
DEMENTIA OR A LANGUAGE BARRIER
IN GENERAL BUT SPECIFICALLY FOR
AUTISM PHOTOS RELATED TO WHAT
LAW ENFORCEMENT MIGHT NEED TO
ASK OR INFORMATION THEY MIGHT
NEED AND I KNOW IT'S A LOT TO
CARRY AROUND DIFFERENT THINGS.
I HAVE THREE PAIRS OF HEADPHONES
IN THAT BAG BUT YOU CAN PRINT IT
OUT FOR YOURSELF.
I HAVE VERBAL SHUTDOWN DURING A
MELTDOWN AND HAVING THAT AT YOUR
DISPOSAL YOU CAN PULL OUT AND
POINT TO CAN START TO BRIDGE THE
GAP OF COMMUNICATION.
IT'S ON THE WEBSITE WITH ENGLISH
AND SPANISH AND CALL US AT 1-
80
800-SPANISH.
>> I LIKE THE PRESENTATION YOU
FEATURED I.D. BRACELETS AND I
MENTIONED I.D. FLAGS AND THINGS
PROPOSED.
THAT'S ONE ALTERNATIVE THAT
WORKS FOR PEOPLE WHO DON'T SPEAK
WHO DON'T NEED TO REACH FOR
THEIR WALLET WHICH CAN BE
POTENTIALLY PERCEIVED AS
THREATENING AND ALLOWS THEM TO
COMMUNICATE INFORMATION WITHOUT
SPEAKING.
I THINK THAT IS -- I WAS
GRATIFIED TO SEE THAT AS AN
EXAMPLE IN THE PRESENTATION
BECAUSE THAT IS SOMETHING THAT'S
COME UP FOR US THAT WE DISCUSSED
AND RECOMMENDED IN THE PAST.
>> Josh: SCOTT.
>> I WONDERED IF ANY PANELISTS
MIGHT HAVE SUGGESTIONS, IDEAS
HOW TO APPLY LESSONS LEARNED
FROM LOCAL AND STATE PERSPECTIVE
TO THE FEDERAL SYSTEM BECAUSE WE
DON'T HAVE REQUIREMENTS FOR
IMPROVING ACCESS AND ACCESS FOR
AUTISTIC PEOPLE AND SUPPORTING
PROGRAMS AND PRACTICES.
THE FEDERAL COURT SYSTEM IS NOT
REQUIRED UNDER ANY STATUTE TO
PROVIDE ACCOMMODATIONS OTHER
THAN COMMUNE SUPPORTS LIKE
SIGNING LANGUAGE AND CART
SYSTEMS AND THERE'S A LARGE GAP
WITH REGARD TO THE FEDERAL AND
STATE SYSTEM AND WONDERING IF
ANYTHING CAN TRANSFER FROM THE
STATE LOCAL SYSTEM.
THANKS.
>> Josh: ANY PANELISTS CARE TO
RESPOND?
THAT'S TELLING.
>> THIS IS SPECIFIC.
I HAVE CLOCKED IN PARTNERSHIP
WITH THE CENTER FOR EXPLOITED
AND MISSING CHILDREN AND
FEEDBACK WE GOT INCLUDING
COMMAND LEVEL LEADERSHIP AND THE
TRAIN THE TRAINER MODULE SO
YOU'RE NOT JUST TARGETING BUT
BILLING UP WITH THE COMMUNITY
AND LEVELLING UP THE AUTISM
KNOWLEDGE OF THAT STRUCTURE AND
WE KNOW THE CHALLENGE IS 1
MILLION LAW ENFORCEMENT OFFICERS
IN THE UNITED STATES.
THE STRUCTURE WITHIN THAT IS SO
COMPLICATED.
THERE'S HUNDREDS OF BRANCHS AT
THE STATE LEVEL BUT MAKING SURE
YOU'RE INCLUDING COMMAND-LEVEL
LEADERSHIP IN THE TRAINING WILL
ALSO INCENTIVIZE THOSE POSITIVE
INTERACTIONS.
YOU CAN CREATE OPPORTUNITIES TO
NOT ONLY THINK THROUGH WHEN
THINGS GO WRONG HOW CAN WE DO
BETTER BUT CELEBRATE AND TO
REALLY MAKE SPACE FOR MAKING
SURE THOSE POSITIVE EXAMPLES ARE
BECOMING POLICY AND PROCEDURE
AND NOT JUST ONE-OFFS.
>> Josh: THANK YOU.
WE'LL TURN TO A COMMENT FROM
MORENIKE.
>> IT'S EXTREMELY FRIGHTENING
PEOPLE ARE TRYING TO WEAPONIZE
LABELS AND SO-CALLED COMMUNITIES
OF CHOICE WHEN THEY KNOW THE
TERM COMMUNITY OF CHOICE MEANS
SOMETHING COMPLETELY DIFFERENT.
THINGS THEY'RE UNJUST WAYS TO
THROW THINGS AWAY AND WHO WILL
BE HURT MOST PEOPLE WHO LOOK
LIKE ME AND MY KIDS AND CLAIM
THEY'RE NECESSARY AS A PERSON
WITH A GRADUATE DEGREE IN
SPECIAL EDUCATION AND BLACK
DISABLED MOM WHO'S BLACK
DISABLED SON EXPERIENCED
INSTITUTIONAL AND THE THINGS
BEING PUSHED BY CERTAIN GROUPS
AND SIMILARLY MIND INDIVIDUALS
GET PEOPLE KILLED.
>> Josh: THANK YOU.
DINA.
>> THANK YOU.
IN MY YORK AS A SOCIAL WORKER
EVERY SINGLE INDIVIDUAL THEY
HAVE HAD DEALINGS WITH LAW
ENFORCEMENT GOT THEIR DIAGNOSIS
AFTER THE DEAL ENDS WITH LAW
ENFORCEMENT.
GETTING PEOPLE PROPERLY
DIAGNOSED TO GET AN ALERT
BRACELET OR WHATEVER IS
CRITICALLY IMPORTANT.
I HAVE THE SAME CONCERNS OF THE
I.D. CARD BUT THE REACHING FOR
THE WALLET THAT TERRIFIES ME AND
WE TAUGHT MY SON TO SAY I NEED
MY MOM, I'M AUTISTIC AND TAP THE
DOG TAG BECAUSE THEN ALL THE
HANDS ARE VISIBLE.
I AGREE, WE ABSOLUTELY HAVE TO
START TEACHING OUR PEOPLE HOW TO
USE THEIR HANDS AND DO THOSE
THINGS.
SADLY, MOST PEOPLE OF COLOR GET
THAT TALK WAY EARLY ON BUT
THERE'S STILL DISPROPORTIONATELY
REPRESENTS INTERACTIONS AND
PARENTS ARE SO AFRAID THEY'LL BE
SCARED OF POLICE THEY DON'T
TEACH THEM ANYTHING.
THAT DOESN'T WORK EITHER.
THANKS FOR LISTENING TO THAT.
I WANTED TO BRING UP ONE -- I
LOVE YOUR TRAFFIC STOP IDEA.
YOU THINK IF YOU CAN DRIVE A CAR
YOU CAN DRIVE A CAR BUT IF YOU
CAN'T DEAL WITH THE LAW
ENFORCEMENT OFFICER WHAT WON'T
TRAINED WHEN THEY STOP YOU
YOU'RE NOT READY TO DRIVE.
LAST THING I WANT TO SAY IS I'M
GOING TO HAVE TOLL YOU THE OHIO
STATE SENATE JUST OVERRODE THE
GOVERNOR'S VETE SKWOE TO DENY
TRANS-GENDER ACCESS TO FOR
PEOPLE WHO ARE TRANSGENDER.
AND WE TALKED ABOUT LGBTQ AND
INTERSECTIONALITY AND THE
HIGHEST RISK FACTOR FOR
INTERACTION IS BEING A BLACK
MALE TRANSGENDER PERSON
TRANSITIONING TO FEMALE.
THEY HAVE THE HIGHEST EXPOSURE
RISK OF ALL.
I HOPE ALL WE TALKED ABOUT IN
TERMS OF TRAINING LAW
ENFORCEMENT PEOPLE WE'RE ALSO
ING THE HIGHER PERCENTAGE OF
NEURODIVERGENT PEOPLE PART OF
THE TRANSGENDER COMMUNITY
BECAUSE THEY'RE DIAGRAM PANTLY
THROUGH THE COUNTRY.
I'M SORRY I DIDN'T HAVE A
QUESTION.
I HAD TO PREACH A MINUTE.
IF THERE'S A DATABASE THAT
POSSIBLY A PARENT OR GUARDIAN OR
POSSIBLY A THIRD-PARTY PUT YOU
IN YEARS AGO THAT CAN BE USED TO
DEFY AND WE'VE SEEN A NUMBER OF
STATES TARGETED DISABILITY
STATUS SPECIFICALLY AUTISM TO
SAY AUTISTIC PEOPLE ARE NOT
CAPABLE OF KNOWING WHO THEY ARE
AND MAKING THE DECISIONS AND
SEEKING TRANS-AFFIRMING CARE.
THAT'S A VERY ACTIVE CONCERN FOR
OUR COMMUNITY.
THAT INTERSECTS WITH THE
CONCERNS AROUND DISABILITY AND
WHETHER THE 9-1-1 DATABASE OR
HOW THAT INFORMATION'S USED
BECAUSE THAT A PLACE WHERE
THAT'S A REALLY SERIOUS CONCERN.
>> I WANTED TO TELL A SHORT
STORY WHICH IS THIS.
MY SON IS WHO IS AUTISTIC, LAST
YEAR WE WERE IN PARIS AT NEW
YEAR'S AND THEY BLOCKED OFF ALL
THE STREETS IN OUR ROUTE BACK TO
OUR HOTEL, HE'S A CREATURE OF
HABIT TO ROUTE BACK TO THE HOTEL
THE STREETS WERE BLOCKED OFF AND
IN FRONT OF OUR HOTEL THEY HAD
IT BLOCKED.
WE WERE TRYING TO TALK TO THE
OFFICERS TO LET THEM KNOW THAT
WE'RE STAYING IN THE HOTEL RIGHT
THERE AND MY SON DECIDED HE WAS
JUST GOING TO BREAK THE BLOCKADE
AND TOOK OFF RUNNING AND I SAID,
LIKE YOU SEE IN THE MOVIES WHERE
IT'S LIKE NOOO AND I SCREAMED,
HE'S AUTISTIC THE COPS LOOKED AT
EACH OTHER AND THE ONE COP
GRABBED HIM LIKE THIS AND SAID
MISTER, YOU CAN'T RUN OFF LIKE
THAT BECAUSE YOU MADE YOUR
MOTHER UPSET.
I'M THINKING TO MYSELF THAT
NEVER WOULD HAVE HAPPENED IN
AMERICA BECAUSE ALL THEY WOULD
HAVE SEEN IS A BLACK MAN RUNNING
DOWN THE STREET AND DISOBEYING
WHAT THEY WERE TOLD BUT WHEN I
SAID HE'S AUTISTIC, I DON'T KNOW
WHAT I SAID, I WAS IN SUCH A
PANIC, AND THEN WHEN THE OFFICER
AND HE TOLD THE OTHER OFFICER
AND HE'S WALKING BACK WITH HIM
AND SAYS NOW, WE DON'T WANT TO
DO THAT, WE VERY TO LISTEN TO
OUR MOTHER AND LECTURING HIM ON
LISTENING TO HIS MOTHER AND YOU
CAN'T DO THIS AND I'M JUST LIKE,
WHERE AM I, AND I THOUGHT, OH,
YEAH, I'M NOT IN AMERICA.
I WANTED TO LEAVE YOU WITH THAT
AND IT'S FRIGHTENING AND YOU
KEEP SAYING SHE'S KEEPS TALKING
ABOUT RACIAL STUFF BUT THAT'S
WHO I AM AND MY IDENTITY AND
EVERYTHING SAID HERE IT'S GOING
TO TAKE A COLLECTIVE ON ALL
FRONTS TO CHANGE THE WAY WE
PROTECT OUR INDIVIDUALS WHO ARE
PART OF OUR COMMUNITY.
AUTISTIC PEOPLE ARE PART OF OUR
COMMUNITY SO WE NEED TO PROTECT
OUR COMMUNITY MEMBERS AND THAT'S
FIRST AND FOREMOST FOR ME.
WE NEED TO PROTECT OUR COMMUNITY
MEMBERS.
WE ALL NEED TO DO BETTER, RIGHT.
WE NEED TO DO BETTER AND NEED TO
SPEAK UP.
PARENTS NEED TO GO TO LAWMAKERS
AND SAY HERE'S WHAT I NEED FROM
MY CHILD.
YOU CAN'T SIT AT HOME AND BE A
COUCH LEADER IF YOU'RE NOT GOING
ON YOUR COUCH AND GO TO THE
STATE CAPITAL AND SAY YOU NEED
THIS CHANGE AND WHILE YOU'RE
CHILD MATTERS AND YOUR USEFUL TO
ME.
I NEED EVERYBODY TO GET UP AND
PUT PEN TO PAPER AND DO WHAT YOU
GOT TO DO.
>> Josh: KAELYNN.
>> THERE'S OTHER LEVELS IF WE'RE
GOING TO LOOK AT THIS
COMPREHENSIVELY AND SCOTT YOU
BROUGHT UP A COUPLE ISSUES.
WE ENCOUNTERED THE SITUATION
WHERE WE WERE REPRESENTING AN
AUTISTIC MAN AND HIS SPECIALTY
IN DISABILITY LAW HAPPENS TO BE
SURGICAL MALPRACTICE AND CAUSING
DISABILITY.
HE REALLY DID NOT KNOW ANYTHING
ABOUT AUTISM AND YET HE WAS
DEFENDING SOMEBODY WITH AUTISM
WHICH TAKES IT TO THE NEXT LEVEL
OF A FRIEND OF OURS WHO IS A
FEDERAL COURT JUDGE AND SAID
WHAT WOULD YOU CHANGE IN THE
SYSTEM IF YOU COULD AND HE SAID
EDUCATION OF JUDGE ON ALL LEVELS
TO UNDERSTAND AUTISM AND
DISABILITIES.
THAT'S SOMETHING WE HAVE NOT
COVERED HERE YET.
IT IS AN IMPORTANT THING BECAUSE
A JUDGE MAY HAVE THE DISCRETION
OF MAKING A LONGER SENTENCE OR
SHORTER SENTENCE OR MODIFYING
THINGS SO THAT IS AN ELEMENT
THAT EVEN IF THERE ARE EXCELLENT
PEOPLE IN LAW ENFORCEMENT AND
LAURIE, I WANTED TO MENTION SOME
THINGS HERE, IT'S BEEN AMAZING
TO SEE HER TEAM IN ACTION.
THE LAST SITUATION WAS OUR SON
WAS AT A SHOPPING CENTER NOT FAR
FROM HERE WITH A BLACK MAN WHO
HAS BEEN AN ABSOLUTELY AMAZING
CAREGIVER.
HE WENT TO GET A PIZZA GOT OUT
OF THE CAR TO GET THE PIZZA AND
OUR SON ESCAPED FROM THE BACK OF
THE CAR BECAUSE HE WAS MISCH
MISCHIEVOUS AND HE WAS PANICKED
AND WAS PANICKED AND WE CALLED
MONTGOMERY COUNTY POLICE AND
SAID NO SIRENS AND THIS IS WHAT
THE SITUATION IS.
I WAS CONCERNED FOR TWO REASONS.
ONE WE HAD A BLACK MAN AT 10:30
AT NIGHT POSSIBLY GOING THROUGH
HOUSES NEAR THERE OR PARKING
LOTS WHERE CARS WERE PARKED
SEARCHING FOR OUR SON, MEANWHILE
IT TOOK FIVE OFFICERS 15 MINUTES
TO LOCATE OUR SON WHO WENT TO
THE MOVIE THEATRE BECAUSE HE
WANTED POPCORN AND THEY SAID,
MADISON YOU SEEM TO LIKE US
WOULD YOU LIKE TO TAKE A PICTURE
WITH US.
HE'S HAD A POSITIVE ENCOUNTER
WITH OFFICERS.
>> Josh: THANK YOU, I'LL HAVE TO
CUT YOU OFF BECAUSE THREES THREE
MORE PEOPLE AND WE HAVE FIVE
MINUTES.
>> THEY'VE DONE WONDERFUL THINGS
SHE'S NOT BEEN ABLE TO TELL YOU
AND LONG LIST PEOPLE CAN DO IN
THEIR COMMUNITY INCLUDING FIRST
RESPONDERS.
>> Josh: WOULD YOU WANT TO MAKE
A BRIEF COMMENT ABOUT JUDGES
SINCE THAT WAS BROUGHT UP?
>> STATE COURT JUDGE ARE COVERED
BY THE AMERICANS WITH DISABILITY
AT.
I'VE DONE TRAINING FOR STATE
COURT JUDGES IN VIRGINIA AND
I'LL TELL YOU THE JUSTICE
DEPARTMENT IS SUING THE
PENNSYLVANIA JUDICIAL SYSTEM
BECAUSE THERE ARE JUDGES
REFUSING TO ALLOW PEOPLE WHO ARE
HAVE OPIOID USE DISORDER FROM
TAKING METHADONE AND ZAVOXONE
THE DEPARTMENT OF JUSTICE HAS
DONE THINGS IN THIS SPACE AND
DONE TRAINING AND THE VIRGINIA
JUDICIAL SYSTEM HAS A GOOD AZA
COORDINATOR AND WE HAVE A
SETTLEMENT AGREEMENT WITH THE
VIRGINIA SYSTEM FOR FAILING TO
PROVIDE SIGN LANGUAGE
INTERPRETERS TO PEOPLE WHO ARE
DAECH OF DEAF AND SET UP A
SYSTEM AND THEY'RE REQUIRED TO
HAVE ADA COORDINATORS WHO ARE
IN-HOUSE PEOPLE WHO UNDERSTAND
HOW THE ADA WORKS.
>> Josh: THANK YOU, STEVE.
>> THANK YOU PANELISTS FOR THE
SHARING THE RESOURCE NOR
COMMUNITY.
I HAVE A QUESTION IF ANYONE WHO
HAS SPOKEN TODAY HAVE INTERFACED
WITH SCHOOLS OR EDUCATORS OR
SCHOOL ADMINISTRATORS TO SHARE
THE RESOURCES AND TRAININGS THAT
YOU'VE DONE IN THE BROADER
BECAUSE OUR KIDS SPEND HOURS IN
SCHOOL AND THAT WOULD BE A
PERFECT SETTING FOR THE
EDUCATION AND TO INVITE PARENTS
AND CAREGIVERS TO PARTICIPATE IN
THE EDUCATION.
>> Josh: ANYONE?
>> YES, I STARTED ABOUT 10 YEARS
AGO PRESENTING TO EDUCATORS,
PARENTS, PRINCIPLES, ALL SCHOOL
STAFF AND THE GENERAL POPULATION
HAVING AN UNDERSTANDING OF
AUTISM AND OTHER DISABILITIES.
OF COURSE OUR PUSH TO EACH EVERY
CLASS IN MONTGOMERY COUNTY.
ALL OUR CLASSES.
WE'RE TRYING TO HAVE MY PARTNER
IN THE BACK DO THAT.
ARE IN SCHOOLS ALL THE TIME.
WE WERE IN SCHOOLS WHEN FOLKS
MAYBE DIDN'T WANT US IN SCHOOLS
AND I SAID I'M GOING IN BECAUSE
MY KIDS NEED ME AND WE WERE
SEEING OFFICERS HAVE
INTERACTIONS AND I WASN'T GOING
TO TAKE THAT I WASN'T WANTED IN
THE SCHOOL AS AN EXCUSE BECAUSE
I KNOW MY KIDS NEED US AND I'VE
SEEN OUR OFFICERS SAY, WE HAD A
YOUNG MAN IN COMPLETE CRISIS BUT
HE SAID OFFICER LAURIE TOLD KNOW
KEEP MY HANDS HERE OR OFFICER
LAURIE DID THIS OR SAID
SOMETHING.
PLEASE, PLEASE, PLEASE, THE
IMPORTANCE OF POLICE OFFICERS
LOOKING LIKE ME IN FULL UNIFORM
BECAUSE THAT'S WHAT THEY'LL SEE
IN CRISIS IN UNIFORM HAVING THE
INTERACTION SAYING WHAT THEY
SHOULD DO IN A POLICE
INTERACTION NEEDS TO BE
SUPPORTIVE.
IT'S IMPORTANT.
>> DO YOU HAVE A QUESTION OR
COMMENT?
>> THIS PERSON I WAS HOPING TO
ANSWER MY QUESTION LEFT.
I WAS AROUND TRAINING.
DR. REYES IS AWESOME BUT COMING
FROM ALABAMA AND LIVING IN
BALTIMORE IS NOT SOMETHING I
OFTEN EXPERIENCE.
SIMILARLY AS MISPRO MS. PROCTOR
MENTIONED AS MENTIONED MY
INTERACTIONS WITH POLICE HAVEN'T
BEEN THAT POSITIVE DESPITE MY
WONDERFUL EDUCATION MY
INTERACTIONS ARE STILL NOT
ALWAYS THAT GREAT.
I AVOID THE POLICE.
MY QUESTION WAS GIVEN WE HAVE
THIS WONDERFUL TRAINING YOU DO
HERE IN MONTGOMERY COUNTY WHAT
THE BARRIERS TO MAKE THESE
TRAININGS A NATIONWIDE THING.
WE TEACH POLICE HOW TO SHOOT
ACCURATELY AND PRECISION AND HOW
DO WE TRAIN IN DE-ESCALATION IN
MY EDUCATION LEVEL I'VE HAD TO
DEESCALATE WHEN I WASN'T DOING
ANYTHING.
IS IT A FUNDING ISSUE?
A WILLINGNESS ISSUE A TIME
ISSUE?
DO YOU HAVE PERSPECTIVE ON THAT?
I'M THINKING HAVE YOU MORE
INTERACTION WITH A LARGER
VARIETY OF JURISDICTIONS.
WHAT HAVE YOU SEEN TO BE THE
BIGGEST BARRIER TO THESE KINDS
OF TRAININGS?
>> HOW MUCH TIME DO YOU HAVE?
I WOULD SAY THERE ARE 18,000 LAW
ENFORCEMENT AGENCIES AROUND THE
COUNTRY.
STATE MANDATED TRAINING AT THE
LOCAL LEVEL.
THERE'S NO ONE POLICY IN THE
UNITED STATES THAT MANDATES
TRAINING FOR ALL POLICE
OFFICERS.
IT'S AT THE LOCAL AND STATE
LEVEL.
THE AVAILABILITY OF
EVIDENCE-BASED TRAINING
MATERIALS AND THE AVAILABILITY
OF TRAINING TIME.
THERE'S A LOT OF DEMAND FOR
GETTING OFFICERS IN TRAINING ON
A LOT OF DIFFERENT IMPORTANT
TOPICS AND THAT KIND OF THING.
THE RECRUITMENT AND RETENTION
ISSUES IN LAW ENFORCEMENT AND
TAKING OFFICERS OFF THE STREETS
TO GO INTO TRAINING.
THERE'S SOME COMPOUNDING FACTORS
THAT RELATE TO THE IMPACT ON
GETTING THIS TYPE OF TRAINING
OUT ACROSS THE COUNTRY BUT I
WOULD SAY THAT THE STATE LEVEL
ACCREDITATION FOR MANDATING WHAT
OFFICERS NEED THAT IS ONE AVENUE
UNLIKE AMANDA MENTIONED IN
VIRGINIA IT'S ONE HOUR OF
TRAINING THAT IS REQUIRED BUT
IT'S DIFFERENT IN EVERY STATE.
>> THANK YOU VERY MUCH.
I WANT TO THANK THE PANEL
MEMBERS FROM THE EARLIER PANEL
AND THE LATER PANEL THIS
AFTERNOON.
I WANT TO THANK ALL THE
COMMITTEE MEMBERS FOR REALLY
WHAT WAS A SIMULATING
DISCUSSION.
I THINK WE HEARD A LOT.
WE HEARD A LOT ABOUT TRAINING
AND COMMUNITY ENGAGEMENT AND
TRAINING BOTH SIDES, ABOUT
THINKING ABOUT IT
COMPREHENSIVELY AND HEARD ABOUT
OBSTACLES WITH THE FEDERAL
SYSTEM OF ENFORCEMENT IN JUDGES,
WHETHER IT'S ABOUT THE
BALKANIZED SYSTEM.
FOR SOMEONE WHO DEALS WITH
TRYING TO INFLUENCE MEDICAL
PRACTICE, MENTAL HEALTH
PRACTICES THROUGHOUT THE UNITED
STATES, THIS IS A FAMILIAR
STORY.
THE FEDERAL GOVERNMENT OFTEN
DOESN'T SET STANDARDS.
THAT'S LEFT TO VARIOUS OTHER
ORGANIZATIONS INCLUDING STATE
AND LOCAL GOVERNMENT.
THINKING ABOUT WAYS WE MIGHT
RECOMMEND SOME OF THIS WORK TO
BE DONE IN A NATIONAL WAY COULD
BE PRODUCTIVE.
THANK YOU VERY MUCH FOR ENGAGING
ON THESE TOPICS AND FOR ENGAGING
WITH PUBLIC COMMENTS AND WITH
THIS MORNING'S TOPICS AS WELL.
SUSAN, WHAT OTHER CLOSING
REMARKS DO WE HAVE.
>> Susan: I WANT TO THANK YOU
AGAIN FOR WONDERFUL PANELS THIS
AFTERNOON AND APPRECIATE THE
INSIGHT AND SUCH AN IMPORTANT
TOPIC.
I'M GLAD WE WERE ABLE TO TAKE
THIS ON AND HAVE SUCH A GREAT
DISCUSSION SO THANK YOU VERY
MUCH AND I KNOW THAT THROUGH
DEPARTMENT OF JUSTICE THERE'S A
LOT OF DIFFERENT COORDINATION
ACTIVITIES GOING ON.
WE'LL CONTINUE TO ENGAGE ON
THAT.
THANK YOU.
>> Josh: AND BY WAY OF CLOSING
OUT THE MEETING WE'LL DISPENSE
OUT OF TIME INTEREST WITH ORAL
RECITATION OF THE ROUND ROBIN
UPDATES BUT THEY'VE BEEN
PROVIDED IN WRITING AND ALL THE
MATERIALS I'VE SAID -- THAT'S IN
WRITING OR YOU GOT IT BEFORE IS
ALL ON OUR WEBSITE AND ALL
PUBLICLY AVAILABLE.
AND SO ANYONE LISTENING AND
WANTS MORE INFORMATION WANTS TO
BE ABLE TO TAKE A PICTURE OF
THAT QR CODE OR CLICK ON ANY OF
THE LINKS YOU SHOULD BE ABLE TO
GET THAT ON OUR WEBSITE.
THANK YOU VERY VERY MUCH AND OUR
NEXT MEETING IS SCHEDULED FOR --
>> APRIL 17 AND I ALSO WANT TO
GIVE YOU A HEADS-UP WE'RE
TENTATIVELY PLANNING FOR APRIL
16 TO BE OUR SPECIAL EVENT.
YOU'RE HEARING IT AND WE'LL LET
YOU KNOW THE FINAL DATE FOR
THAT.
WE'LL ALSO HAVE OUR OFFICE BE IN
TOUCH WITH THE SUMMARY OF
ADVANCES AND VOTING FOR THAT AND
FOLLOW-UPS WITH THE NEW REPORT
WE'RE GOING TO BE DOING ON
CO-OCCURRING CONDITIONS.
SO WE REALLY APPRECIATE
EVERYONE'S ENGAGEMENT TODAY AND
WISH EVERYONE SAFE TRAVELS HOME
AND HOPE YOU HAVE A WONDERFUL
EVENING.
>>
>> THANK YOU TO THE STAFF
SITTING AROUND THE OUTSIDE OF
THE ROOM.
GIVE THEM A GOOD THANKS AND
ROUND OF APPLAUSE.
EVERYONE WHO TRAVELED SAFE
TRAVELS BACK.