I'M TRISH POWELL, THE CO-CHAIR
OF THE INTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDERS.
I WANT TO TAKE THIS OPPORTUNITY
TO WELCOME YOU TO OUR 2023
PUBLIC MEETING, AND TO LET YOU
KNOW THAT WE ARE DELIGHTED THAT
YOU HAVE JOINED US TODAY.
THE ICCFASD HOLDS ONE PUBLIC
MEETING PER YEAR AND ONE TO TWO
EXECUTIVE COMMITTEE MEETINGS.
AND AT THESE ANNUAL PUBLIC
MEETINGS, WE HAVE EACH AGENCY,
EACH FEDERAL AGENCY
REPRESENTATIVE PROVIDE A REPORT
ON THEIR AGENCY FASD-RELATED
ACTIVITIES FROM FY 22.
THE PRESENTATIONS HAVE BEEN
PRERECORDED, BUT AFTER EACH SET
OF PRESENTATIONS, YOU'LL HAVE AN
OPPORTUNITY FOR QUESTION AND
ANSWERS.
THESE PRESENTATIONS HAVE BEEN
DIVIDED INTO MORNING AND
AFTERNOON SESSIONS.
IN ADDITION, THIS YEAR'S INVITED
SPECIAL PANEL WILL FOCUS ON
SERVICES AND SUPPORTS THAT ARE
AVAILABLE AND WORKING FOR PEOPLE
LIVING WITH FASD AND THEIR
FAMILIES.
WE WILL HEAR FROM INVITED GUEST
SPEAKERS ABOUT LESSONS THEY HAVE
LEARNED FROM LIVED EXPERIENCES
AND WHAT MAKES A DIFFERENCE FOR
INDIVIDUALS WITH FASD AND THEIR
FAMILIES.
THE SESSION WILL BE MODERATED BY
JAN LUTKE WHO HAS EXPERIENCES AS
A PARENT OF A CHILD WITH FASD,
THEN DR. CHRISTIE PETRENKO WILL
SHARE WITH YOU HOW HER RESEARCH
HAS BEEN INFLUENCED BY
INTERACTING WITH INDIVIDUALS AND
THEIR FAMILY WITH FASD.
PANEL MEMBERS HAVE EITHER LIVED
EXPERIENCE AS EITHER AN
INDIVIDUAL WITH FASD OR A PARENT
OR CAREGIVER.
OUR PANELISTS INCLUDE NICHOLAS
DAVIS-MAGLIOZZI, KATRINA
GRIFFIN, CATHY.
HOTELLING AND WE'RE SO PLEASED
TO HAVE THEM WITH US TODAY.
THIS WILL THEN BE FOLLOWED BY
PRESENTATION BY THE FASD UNITED
FAMILY NAVIGATOR PROGRAM GROUP.
IT WILL BE MODERATED BY
ELIZABETH DANG.
PRESENTERS BIOGRAPHIES ARE
POSTED ONLINE AT THE ICCFASD
WEBSITE.
THIS IS A HYBRID MEETING THAT
INCLUDES ZOOM AND VIDEOCAST.
ICCFASD MEMBERS AND SPEAKERS
PARTICIPATE BY ZOOM BUT FOR
TECHNICAL REASONS TO ENABLE A
BROADER AUDIENCE TO PARTICIPATE,
ALL OTHER ATTENDEES ARE JOINING
US ON THE NIH VIDEOCAST AT THE
VIDEOCAST WEBSITE.
VIDEOCAST ATTENDEES CAN SUBMIT
QUESTIONS AND COMMENTS BY
COMPLETING AN ONLINE FEEDBACK
FORM LOCATED ON THE VIDEOCAST
MEETING PAGE.
THIS MEETING IS BEING RECORDED
AND WILL BE ARCHIVED AND
AVAILABLE AT THE NIH VIDEOCAST
WEBPAGE.
WE'LL BREAK FOR LUNCH AT RIGHT
AROUND 12:10, AND RECONVENE AT
12:40 FOR OUR AFTERNOON SPECIAL
PANEL.
WE WILL HAVE A FEW BRIEF SHORT
BREAKS DURING THE MEETING.
NOW I WOULD LIKE TO BEGIN BY
HAVING OUR FEDERAL AGENCY REP
REPRESENTATIVES INTRODUCE
THEMSELVES.
WHEN I CALL YOUR AGENCY, PLEASE
UNMUTE, PUT YOUR CAMERA ON AND
INTRODUCE YOURSELF.
SO FIRST WE'LL START WITH THE
ADMINISTRATION FOR CHILDREN AND
FAMILIES.
>> LET'S SEE, IS MY CAMERA ON?
I THINK -- OKAY.
HI, EVERYBODY.
SHARON NEWBURG-RINN.
I'M FROM THE CHILDREN'S BUREAU,
WHICH IS PART OF THE
ADMINISTRATION FOR CHILDREN AND
FAMILIES, ALSO UNDER THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES.
AND WE DEAL A LOT WITH FOSTER
CARE AND AS MANY OF US KNOW,
THERE ARE A LOT OF CHILDREN IN
FOSTER CARE WHO ARE AFFECTED BY
FASDs, AND A LOT OF THEM ARE
NOT RECOGNIZED.
SO THIS IS OF GREAT INTEREST TO
US.
>> THANKS, SHARON.
NEXT, THE ADMINISTRATION FOR
COMMUNITY LIVING.
>> GOOD MORNING.
MY NAME IS AMANDA REICHARD, AND
I WORK FOR THE ADMINISTRATION
FOR COMMUNITY LIVING,
SPECIFICALLY WITHIN THE RESEARCH
WING OF ACL, WHICH IS NIDILRR OR
THE NATIONAL INSTITUTE ON
DISABILITY, INDEPENDENT LIVING
AND REHABILITATION RESEARCH.
AND WE DEFINITELY ENCOURAGE
APPLICATIONS FOR RESEARCH
RELATED TO FASD WITHIN OUR
AGENCY, AND I'M LOOKING FORWARD
TO HEARING FROM EVERYONE TODAY.
>> THANKS, AMANDA.
NEXT WE HAVE THE OFFICE OF THE
ASSISTANT SECRETARY FOR PLANNING
AND EVALUATION.
KRISTINA, I SEE YOUR NAME.
CAN YOU INTRODUCE YOURSELF?
WE'LL COME BACK TO KRISTINA.
NEXT WE HAVE THE CENTERS FOR
DISEASE CONTROL AND PREVENTION.
>> HI, GOOD MORNING.
MY NAME IS SHIN KIM, AND I'M THE
TEAM LEAD FOR THE PRENATAL
SUBSTANCE EXPOSURE SURVEILLANCE
AND RESEARCH TEAM, AND WE HAVE A
LOT OF DIFFERENT ACTIVITIES
RELATED TO PREGNANCY AND ALCOHOL
AND OTHER SUBSTANCE USE BOTH ON
THE PREVENTION AND THE AFFECTED
INDIVIDUAL SIDE, AND WE ARE
LOOKING FORWARD TO THIS MEETING
AND THE DISCUSSIONS THAT WILL BE
FOLLOWING.
THANK YOU.
>> THANKS, SHIN.
NEXT WE HAVE THE CENTERS FOR
MEDICARE AND MEDICAID SERVICES.
>> HI, I'M CAITLIN CROSS-BARNET,
CMS, TESTS MODELS OF CARE AND
OBVIOUSLY CMS IS A MAJOR COVER
OF MANY AMERICANS, WE COVER 40%
OF ALL PREGNANCIES IN THE UNITED
STATES AND MANY, MANY, MANY
CHILDREN THROUGH MEDICAID AND
CHP PROGRAMS.
WE'RE VERY EXCITED TO BE HERE
TODAY AND SHARE SOME OF WHAT
WE'VE BEEN DOING.
>> GREAT, THANKS, CAITLIN.
NEXT, THE INDIAN HEALTH SERVICE.
>> GOOD MORNING, EVERYBODY.
CAN YOU GUYS HEAR ME?
>> WE CAN, THANK YOU.
>> HI.
THIS IS JB KINLACHEENY,
CURRENTLY SERVING AS THE ALCOHOL
AND SUBSTANCE ABUSE BRANCH
NATIONAL LEAD FOR IHS.
I'M SITTING IN AS AN ALTERNATE
TODAY FOR DR. TINA PETTARA-LAU,
CURRENTLY ON TRAVEL TODAY, BUT
THE INDIAN HEALTH SERVICE
CURRENTLY HAS THE MATERNAL
HEALTH CHILD -- MATERNAL CHILD
HEALTH LEAD, WHICH IS DR. LAU,
AND I SERVE AS THE NATIONAL LEAD
FOR THE ALCOHOL AND SUBSTANCE
ABUSE BRANCH, SO TOGETHER
THERE'S QUITE A FEW ACTIVITIES
THAT ARE HAPPENING WITHIN IHS,
SPECIFICALLY FOCUSING ON
PROVIDING DIRECT CARE FOR
AMERICAN INDIAN AND ALASKA
NATIVES THROUGHOUT THE COUNTRY.
THANK YOU, LOOK FORWARD TO THE
DISCUSSIONS TODAY.
>> THANKS, JB, AND THANKS FOR
JOINING US TODAY.
THE HEALTH RESOURCES AND
SERVICES ADMINISTRATION.
>> HI, GOOD MORNING, EVERYONE.
MY NAME IS DAWN LEVINSON.
I'M WITH HRSA'S MATERNAL CHILD
AND HEALTH BUREAU, I'M THE
DEPUTY DIRECTOR IN OUR DIVISION
OF HEALTHY START AND PERINATAL
SERVICES, IN WHICH OUR FASD
INVESTMENT RESIDES.
OUR MISSION IS TO IMPROVE THE
HEALTH AND WELL-BEING OF OUR
NATION'S MOTHERS, CHILDREN AND
FAMILIES, AND SO LATER THIS
MORNING I WILL BE SHARING SOME
UPDATES FROM OUR FASD PROVIDER
TRAINING PROGRAM.
THANK YOU.
>> THANKS, DAWN.
NEXT WE HAVE THE SUBSTANCE ABUSE
AND MENTAL HEALTH SERVICES
ADMINISTRATION.
>> I'M ON MUTE.
I CAN'T --
>> WE CAN HEAR YOU.
>> MY VIDEO IS MUTED.
I DON'T KNOW WHY.
ANYHOW, GOOD MORNING.
I'M JON DUNBAR-COOPER FROM
SAMHSA.
WE PROVIDE SUBSTANCE ABUSE
PREVENTION AND TREATMENT
SERVICES AS WELL AS MENTAL
DISORDERS FOR ADOLESCENTS AND
ADULTS, AND I WILL BE SHARING
WITH YOU DIFFERENT PROGRAMS THAT
SAMHSA IS DOING RECENTLY IN THE
LAST YEAR AND THE YEAR BEFORE.
THANK YOU.
YOI LOOK FORWARD TO.
>> THANK YOU, JON.
NEXT WE HAVE THE NATIONAL
INSTITUTE ON ALCOHOL ABUSE AND
ALCOHOLISM.
>> GOOD MORNING, EVERYONE.
MY NAME IS BILL DUNTY.
I'M A PROGRAM OFFICER IN THE
DIVISION OF METABOLISM AND
HEALTH EFFECTS.
AND I ALSO SERVE AS OUR
INSTITUTE'S FASD RESEARCH
COORDINATOR.
>> THANKS, BILL.
WE ALSO NOW HAVE THE EUNICE
KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT.
WE'LL COME BACK TO THEM.
NEXT THE NATIONAL INSTITUTE OF
MENTAL HEALTH.
>> GOOD MORNING.
MY NAME IS JULIA ZEHR, PROGRAM
OFFICER AND BRANCH CHIEF AT THE
NATIONAL INSTITUTE OF MENTAL
HEALTH.
I'M ALSO SERVING AS AN ALTERNATE
TODAY AND MY BRANCH WORKS WITH
DEVELOPMENTAL RISK AND
RESILIENCE ACROSS CHILDREN AND
ADOLESCENTS.
LOOKING FORWARD TO THIS.
THANK YOU.
>> THANKS FOR JOINING US, JULIA.
AND I BELIEVE WE DON'T HAVE
ANYBODY ON TODAY FROM THE
NATIONAL INSTITUTE ON DRUG
ABUSE, IS THAT CORRECT?
OKAY.
HEARING NONE, AND LET ME JUST
COME BACK TO SEE IF KRISTINA CAN
INTRODUCE HERSELF FROM THE
OFFICE OF THE ASSISTANT
SECRETARY FOR PLANNING AND
EVALUATION?
>> GOOD MORNING.
AS TRISH INTRODUCED ME, I WORK
WITHIN THE OFFICE OF THE
ASSISTANT SECRETARY OF PLANNING
AND EVALUATION.
WE LEAD POLICY DEVELOPMENT AND
ADVISE THE SECRETARY ON POLICY
IN A WIDE RANGE OF AREAS,
INCLUDING SUBSTANCE ABUSE.
POLICY SUPPORT AND RESEARCH.
WITHIN THAT TEAM, PRENATAL
SUBSTANCE EXPOSURES AND ALCOHOL
EXPOSURES.
SO I LOOK FORWARD TO TALK TO YOU
TODAY MORE ABOUT OUR WORK IN
THIS AREA.
THANK YOU.
>> THANK YOU, KRISTINA.
AND I JUST WANT TO INTRODUCE FOR
THOSE OF YOU WHO DON'T KNOW HER
THE EXECUTIVE SECRETARY FOR THE
ICCFASD, TATIANA BALACHOVA, WHO
DOES ALL THE HARD WORK OF
PUTTING THESE MEETINGS TOGETHER,
AND REALLY TAKING CARE OF
RUNNING THIS COMMITTEE.
SO WITH THAT, I'D LIKE TO TURN
IT OVER TO TATIANA.
THANK YOU, AGAIN, TO EVERYONE
FOR JOINING US.
I THINK WE HAVE A REALLY
INTERESTING MEETING FOR YOU.
I HOPE YOU CAN STAY FOR THE
WHOLE THING.
IF NOT, PLEASE WATCH THE
VIDEOCAST OF THE PARTS YOU'RE
NOT ABLE TO JOIN US FOR.
THANKS VERY MUCH.
TATIANA?
>> THANK YOU, TRISH.
WELCOME, EVERYBODY.
I JUST WANTED TO ALSO MENTION
THAT I THINK TRACY KING IS HERE
FROM NICHD, IF TRACY WANTS TO
INTRODUCE HERSELF.
>> I APOLOGIZE.
CAN YOU ALL HEAR ME?
I'M TRACY KING.
I'M A MEDICAL OFFICER IN THE
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES BRANCH AT NICHD.
AND I'M REALLY GLAD TO BE HERE.
>> THANK YOU, TRACY.
MY NAME IS TATIANA BALACHOVA, AS
I HAVE BEEN INTRODUCED ALREADY.
ALSO PROGRAM OFFICIAL IN THE
DIVISION OF EPIDEMIOLOGY AND
PREVENTION RESEARCH AT NIAAA AND
THANK YOU, EVERYBODY, FOR
JOINING US.
WELCOME TO THIS MEETING TODAY.
I LOOK FORWARD TO AN INTERESTING
AND PRODUCTIVE MEETING.
SO WITH THAT, I WILL BEGIN MY
PRESENTATION TO GIVE BRIEF
INTRODUCTION TO ICCFASD.
>> GOOD MORNING.
MY NAME IS TATIANA BALACHOVA.
AS I INTRODUCED MYSELF, I AM A
CLINICAL PSYCHOLOGIST AND
SCIENTIFIC COORDINATOR AND
EXECUTIVE SECRETARY OF THE
ICCFASD, INTERAGENCY
COORDINATING COMMITTEE ON FETAL
ALCOHOL SPECTRUM DISORDERS.
I WILL PROVIDE TODAY A BRIEF
INTRODUCTION TO THE ICCFASD.
ICCFASD IS A COMMITTEE TO
IMPROVE COMMUNICATION AND
COOPERATION BETWEEN FEDERAL
AGENCIES.
AGENCIES THAT ADDRESS ISSUES
RELATED TO FASD AND PREVENTION.
WE KNOW ALCOHOL USE DURING
PREGNANCY INCREASES
COMPLICATIONS SUCH AS
MISCARRIAGE AND OTHER PROGRAMS.
ONE TO 5% OF SCHOOL AGED
CHILDREN ARE AFFECTED IN THE
UNITED STATES.
FASD ARE LIFELONG CONDITIONS
THAT AFFECT MANY PEOPLE AND
FAMILIES IN THIS COUNTRY.
THE PROGRAM WAS RECOGNIZED BY
THE UNITED STATES CONGRESS
ALMOST 30 YEARS AGO, WHEN THE
CONGRESSMAN DATED THE COMMIT EYE
OF THE INSTITUTE OF MEDICINE TO
STUDY FETAL ALCOHOL SYNDROME.
THE 1996 REPORT RECOMMENDED TO
ESTABLISH AN ENTITY COMPRISED OF
REPRESENTATIVES FROM RELEVANT
FEDERAL AGENCIES AND LED BY
NIAAA TO COORDINATE NATIONAL
EFFORTS.
SINCE THEN, ICCFASD HAS BEEN
SPONSORED BY NIAAA.
OUR CURRENT CHAIR IS DR. TRISH
POWELL, DEPUTY DIRECTOR OF
NIAAA.
WE HAVE MANY DIFFERENT GROUPS IN
THE FEDERAL GOVERNMENT
PARTICIPATE IN ICCFASD.
THE MAJORITY OF MEMBERS HAVE
BEEN FROM DEPARTMENT OF HEALTH
AND HUMAN SERVICES.
AGENCIES AND COMMITTEES ARE
HIGHLIGHTED ON THIS SLIDE.
EACH OF THE AGENCIES IS ASSIGNED
A REPRESENTATIVE TO ICCFASD AND
DURING OUR MEETING TODAY, EACH
MEMBER WILL GIVE AN UPDATE ON
THE AGENCY-RELATED ACTIVITIES
COMPLETED IN 2022.
THE AGENCY'S WORK IN DIFFERENT
AREAS RELATED TO FASD I --
COMPLEXITY OF PROBLEMS AND
SOLUTIONS THAT NEEDED TO IMPROVE
LIVES OF CHILDREN AND ADULTS
LIVING WITH FASD, AND FOR
PREVENTION OF DISORDERS.
ICCFASD MEMBERS WORK TOGETHER TO
SHARE IDEAS, REPORT ACTIVITIES
TO OTHER MEMBERS, AND TO THE
PUBLIC.
AND TO CONSULT AND COLLABORATE
ON PROGRAM DEVELOPMENT AND OTHER
TASKS.
AT TIMES, ICCFASD HAS WORKING
GROUPS TO IMPLEMENT SPECIFIC
GOALS.
I WILL GIVE ONE EXAMPLE.
IT IS CURRENTLY ACTIVE WORKING
GROUP ON SCREENING AND BRIEF
INTERVENTION AND REFERRAL FOR
TREATMENT FOR PREGNANT AND
POSTPARTUM PEOPLE.
THIS GROUP WAS CREATED IN 2021.
OBJECTIVES INCLUDED ON THE
SLIDE.
YOU CAN SEE THAT THIS
COLLABORATIVE EFFORT IS IN LINE
WITH AREAS TO REDUCE PREVALENCE
OF FASD AMONG CHILDREN IN THE
UNITED STATES.
WE HAVE STRONG REPRESENTATION
FROM FEDERAL AGENCIES ENGAGED IN
SCREENING AND BRIEF INTERVENTION
SERVICES ON THIS GROUP.
THIS WORKING GROUP IS COVERED BY
CDC AND NIAAA REPRESENTATIVES.
MORE INFORMATION ABOUT THIS
WORKING GROUP AND OTHER WORKING
GROUPS INCLUDED ON THE ICCFASD
WEBPAGES.
I ENCOURAGE YOU TO VISIT OUR
WEBPAGES TO LEARN MORE ABOUT
ICCFASD.
WE APPRECIATE YOUR PARTICIPATION
IN THE MEETING TODAY, AND LOOK
FORWARD TO YOUR QUESTIONS AND
COMMENTS AND YOUR PARTICIPATION
IN OUR DISCUSSIONS.
THANK YOU.
MY CONTACT INFORMATION IS
INCLUDED ON THE SLIDE.
ON THE WEBSITE, YOU CAN FIND
EACH AGENCY REPRESENTATIVE NAME
AND CONTACT INFORMATION.
PLEASE CONTACT US.
WE WOULD LIKE TO HEAR FROM YOU.
WE'LL CONTINUE OUR MEETING WITH
AGENCIES' REPORTS OF ACTIVITIES
FROM 2022.
SEE THE AGENDA FOR ORDER OF
PRESENTATIONS.
WE WILL HAVE TIME FOR DISCUSSION
AND CONVERSATIONS AFTER EACH
AGENCY'S REPORTS.
VIDEOCAST PARTICIPANTS, YOU CAN
SUBMIT YOUR QUESTIONS AND
COMMENTS BY COMPLETING ONLINE
FEEDBACK FORM ON THE MEETING
PAGE.
IT LOOKS LIKE THIS BOX ON MY
SLIDE.
DR. BILL DUNTY AND I WILL
RECEIVE YOUR SUBMISSION AND WE
WILL BRING THEM TO THE
DISCUSSION.
WITH THAT, I'D LIKE TO TURN OVER
TO THE ADMINISTRATION FOR
CHILDREN AND FAMILIES.
>> HI, EVERYONE.
I'M SHARON NEWBURG-RINN OF THE
CHILDREN'S BUREAU, WHICH IS PART
OF THE ADMINISTRATION FOR
CHILDREN AND FAMILIES, AND I
REPRESENT THEM ON THE
INTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDERS.
SO I AM HERE IN WASHINGTON BUT I
ALSO WANT TO JUST MENTION THAT
THIS IS NOT JUST A PROJECT OF
THE CHILDREN'S BUREAU BUT WE
ALSO DO THIS IN COLLABORATION
WITH JACQUELINE BERTRAND OF THE
CENTERS FOR DISEASE CONTROL AND
PREVENTION DOWN IN ATLANTA.
SO I JUST HAVE FIVE SLIDES FOR
YOU TODAY.
I HOPE THIS ISN'T GOING TO BE
TOO TAXING.
THIS IS A LIST OF THINGS WE'RE
DOING, JUST EXPLAINING A LITTLE
BIT ABOUT IT.
ONE THING I DO IS I REPRESENT
ACF ON THE WHITE HOUSE OFFICE ON
NATIONAL DRUG CONTROL POLICY.
AND THAT'S WITH STEVEN PATRICK,
WHO'S A DOCTOR AT VANDERBILT
UNIVERSITY.
AND ONE OF THE THINGS THAT HE
DID IS HE REQUESTED FROM THIS
GROUP RECOMMENDATIONS THAT COULD
BE HELPFUL FOR THE WHITE HOUSE
AND HE HAD TWO CRITERIA FOR
THAT, WHICH I THOUGHT WERE
ACTUALLY VERY GOOD.
HE SAID FIRST HE WANTED THEM TO
HAVE A POSITIVE IMPACT ON
PRENATAL EXPOSURES, AND HE ALSO
WANTED TO HAVE IT NOT REQUIRE
ANY ADDED FUNDS, NUMBER ONE, AND
NO NEW ADDED LAWS.
I THINK THOSE ARE ACTUALLY TWO
GOOD THINGS FOR US ALL TO KEEP
IN MIND, BECAUSE TO THE DEGREE
THAT WE'RE ABLE TO DO THAT SORT
OF THING TO MAKE AN IMPACT
WITHOUT HAVING A HUGE EFFORT GO
INTO FINDING THE MONEY AND
MAKING NEW LAWS, I THINK WE'RE
FAR AHEAD FR OF THE GAME.
WE CAN DO AN AWFUL LOT OF THINGS
IF YOU HAVE THE FUNDS AND YOU
HAVE NEW LAWS, BUT WHAT IF YOU
DON'T, WHICH IS SOMETIMES A MORE
REALISTIC PLACE TO BE.
SO OUR RECOMMENDATION FROM MY
GROUP WAS THAT WE DO A
MEMORANDUM.
AND IT WOULD BE TO THE ACF
REGIONAL OFFICES, AND TO THE
STATES.
AND IT WOULD MAKE THESE POINTS
THAT I HAVE LISTED ON THE
SCREEN.
FIRST, THAT FASDs ARE
IMPORTANT AND PREVENTABLE
DISORDERS, AND IDENTIFYING THEM
IS CRITICAL WHEN CHILDREN COME
INTO CONTACT WITH THE CHILD
WELFARE SYSTEM, SO THAT THEY AND
THEIR FAMILIES CAN RECEIVE
SERVICES.
ALSO AN IDENTIFICATION STRATEGY
MUST AVOID MAKING THE PARENTS
FEARFUL THAT SOMEBODY IS GOING
TO SCOOP THEIR CHILDREN UP FROM
FOSTER CARE -- FROM THEIR HOME
AND PUT THEM INTO FOSTER CARE.
AND THERE IS RESEARCH THAT SHOWS
THAT WHEN PARENTS ARE AFRAID FOR
THAT SORT OF REASON, THEY'RE NOT
GOING TO SEEK HELP.
SO THAT'S A VERY CRITICAL POINT.
AND I HAVE ONE ADDED NOTE THAT I
WANT TO MAKE HERE.
THIS IS NOT SOMETHING THAT -- OR
MAYBE I DID SAY IT WHEN IT WAS I
WAS IN THAT GROUP WITH STEVEN
PATRICK.
SOME PEOPLE, ESPECIALLY IN
CONGRESS, OR OUTSIDE, MAY SEE
THIS AS AN OPPORTUNITY TO SAY,
WELL, GEE, YOU'RE NOT GOING TO
HAVE AS MANY CHILDREN IN FOSTER
CARE?
IF THAT'S THE CASE, THEN YOU
DON'T NEED AS MUCH MONEY.
AND WE CAN LOWER THE AMOUNT OF
PUBLIC FUNDS, WE CAN CUT THOSE
FUNDS.
NO, WE DON'T WANT TO CUT THE
FUNDS.
BECAUSE WE ACTUALLY NEED FUNDS
TO DO THE SERVICES THAT THE
CHILDREN AND FAMILIES NEED TO
REMAIN SAFELY IN THEIR HOMES.
SO THE CHILDREN'S BUREAU
LEADERSHIP AGREED TO THIS IDEA
AND CONCEPT TO DO THIS SORT OF A
MEMORANDUM.
IT'S NOT -- IT DOESN'T HAVE THE
FORCE OF LAW, BUT IT'S STILL
SOMETHING THAT WE CAN DO AND
IT'S NOT GOING TO COST MONEY OR
REQUIRE EXTRA FUNDS.
SO WE'RE WORKING ON THAT.
MY SECOND MAJOR POINT IS THAT
WHAT WE'RE DOING NOW IS WE'RE
CONTINUING A COLLABORATION THAT
WE'VE HAD FOR SOME TIME NOW WITH
THE CHILD WELFARE LEAGUE OF
AMERICA.
AND THAT'S VERY IMPORTANT
BECAUSE WE ARE ALL ABOUT CHILD
WELFARE AT THE CHILDREN'S
BUREAU.
SO WE'RE PLANNING A SPECIAL
ISSUE ON THE TOPIC OF CHILDREN
WHO ARE PRENATALLY EXPOSED TO
ALCOHOL AND OTHER DRUGS, AND
WE'RE MAKING IT THAT BROAD
BECAUSE WE DON'T WANT TO JUST
NARROW IT DOWN TO ALCOHOL, EVEN
THOUGH MAYBE EVERYBODY AT THIS
MEETING MAY BE PARTICULARLY
INTERESTED IN THE ALCOHOL, BUT
WE WANT TO MAKE IT BROAD ENOUGH
AND ACTUALLY I TRY TO PULL OTHER
PEOPLE IN BY TALKING IN GENERAL
ABOUT DRUGS AND NOT JUST
ALCOHOL.
SO THERE'S GOING TO BE A SPECIAL
ISSUE OF A JOURNAL ON THE TOPIC
OF THESE PRENATALLY EXPOSED
CHILDREN, AND WE'RE GOING TO
HAVE A LOT -- WE HAVE RECEIVED A
LOT OF PAPERS ON THIS TOPIC AND
THEY HAVE BEEN REVIEWED.
AND THERE'S ALSO GOING TO BE A
SPECIAL SECTION AT THE BEGINNING
OF THIS DOCUMENT, THE BEGINNING
OF THE SPECIAL ISSUE, THAT WILL
HAVE COMMENTS BY THE CHILD
WELFARE LEAGUE OF AMERICA
LEADERSHIP, AND BY THE
CHILDREN'S BUREAU LEADERSHIP.
AND THIS PUBLICATION IS EXPECTED
IN 2024.
WE'RE ALSO -- AND THIS IS
PROBABLY -- REALLY MAYBE I
SHOULD HAVE STARTED OUT WITH
THIS, THE CONTINUING PROJECT,
THE BIG PROJECT THAT WE'RE
WORKING ON, THE CHILDREN'S
BUREAU AND ACF AND THE CDC ARE
WORKING ON A FIVE-YEAR
COLLABORATIVE RESEARCH PROJECT
ON FASDs IN THE CHILD WELFARE
CONTEXT.
I'M AT THE CHILDREN'S BUREAU AND
I'M THE OVERALL PROJECT OFFICER
FROM THE CDC, AND REMEMBER I
TOLD YOU WE WERE COLLABORATING
WITH THE CDC, THEY'RE PROVIDING
SUPPLEMENTAL FUNDING.
AND FOR THE CDC PROJECT LEAD,
THAT IS DR. JACQUELYN BERTRAND.
NOW OUR CURRENT WORK, WHAT WE'RE
DOING ON THIS PROJECT, IS THAT
OUR CONTRACTOR, JAMES BELL
ASSOCIATES, AND THE CONTRACT
LEAD THERE IS DR. ERIN INGOLDSBY
AND ICF ARE NOW RECRUITING
MULTIPLE CHILD WELFARE AGENCIES
ACROSS THE COUNTRY TO BE
INVOLVED IN THE DEVELOPMENT OF A
TOOLKIT AND EVALUATION FOR
USABILITY AND EFFICACY.
OKAY.
CONTINUING HERE WITH MY
INFORMATION ON THAT MAJOR
PROJECT THAT WE'RE DOING, WE'RE
WORKING WITH A TRIBE, THAT'S ONE
OF THE ASPECTS OF THIS WORK THAT
WE'RE DOING, AND THAT'S UNDER
THE LEADERSHIP OF DR. PRISCILLA
DAY.
SHE'S A TRIBAL MEMBER.
SHE IS FROM THE UNIVERSITY OF
MINNESOTA.
AND WE'RE COLLECTING VERY
SIMILAR INFORMATION FROM THAT
TRIBE, BUT IN A WAY THAT IS, WE
HOPE, IN KEEPING WITH THEIR
NEEDS AND THEIR TRADITIONS,
WHICH WE HAVE LEARNED IS A VERY
IMPORTANT THING TO DO.
SO DR. DAY HAS BEEN CRITICAL TO
MAKING THIS WORK WELL.
AND WE'VE BEEN WORKING WITH HER
FOR QUITE A LONG TIME NOW.
WE'RE CONTINUING OUR CLOSE WORK
WITH SOME FASD NATIONAL EXPERTS,
AND EXAMPLES ARE DR. IRA
CHASNOFF, DR. DOUGLAS WAITE, DR.
THEY ARE REVIEWING ALL OUR IDEAS
AND FOR JUST A GENERAL REVIEW.
ANOTHER IMPORTANT ASPECT OF WHAT
WE'RE DOING IS ON THE RACE -- WE
HAVE RACE AND ETHNICITY EXPERTS,
WHICH IS AN EFFORT BEING LED BY
DR. CRYSTAL COLES, AND THEY ARE
NOW REVIEWING OUR PROPOSED
TOOLKIT AND JOURNAL ARTICLES TO
ENSURE THAT THEY MEET THE
HIGHEST STANDARDS REGARDING
THESE ISSUES IN THE CHILD
WELFARE FIELD.
AND THEY ARE ALSO GOING TO BE
DOING AN EQUITY ARTICLE FOR THIS
CHILD WELFARE LEAGUE OF AMERICA
SPECIAL ISSUE.
NOW, THAT'S THE WORK WE'RE DOING
NOW BUT LOOKING TOWARD THE
FUTURE, WE HAVE BEEN MEETING
WITH THE NATIONAL CENTER ON
SUBSTANCE ABUSE IN CHILD
WELFARE, AND THAT'S A
COLLABORATION BETWEEN THE
CHILDREN'S BUREAU AND THE
SUBSTANCE ABUSE AND MENTAL
HEALTH SERVICES ADMINISTRATION,
OR SAMHSA, REGARDING HOW OUR
INFORMATION CAN BE USED IN THE
FUTURE, OR HOW IT CAN BE
DISSEMINATED.
AND ONE THING THAT THIS GROUP
DOES IS IT PROVIDES IN DEPTH
TECHNICAL ASSISTANCE TO STATE
CHILD WELFARE AGENCIES, SO IT'S
ALREADY VERY IMPORTANT IN THE
FIELD.
THE LAST COMMENT THAT I WANT TO
MAKE IS THAT THIS IS THE ONLY
OTHER ACTIVITY THAT I'M AWARE OF
NOW IN ACF THAT'S GOING ON.
HEAD START, WHICH IS UNDER ACF,
HAD A PRESENTATION THAT THEY
DID, IT WAS AN HOUR-LONG
PRESENTATION, IN FY 22, TO
EXPLAIN FASDs TO A LARGE GROUP
OF HEAD START GRANTEES SO THEY
HAD STAFF FROM MANY OF THESE
GRANTEES LISTENING IN.
AND I LISTENED IN TOO, I WASN'T
PART OF THAT PRESENTATION BUT I
DID LISTEN TO IT AND I DID THINK
IT WAS VALUABLE.
AND TO MY KNOWLEDGE, THERE'S
NOBODY ELSE THAT'S DOING WORK ON
THIS IN ACF.
AND THERE'S JUST SOME CONTACT
INFORMATION, AND THAT'S IT.
AND THEN I CAN TAKE QUESTIONS AT
A LATER TIME.
THANK YOU.
BYE.
>> HELLO.
MY NAME IS AMANDA REICHARD, AND
I WORK AT THE ADMINISTRATION FOR
COMMUNITY LIVING.
TODAY I'LL BE TALKING TO YOU
ABOUT ACL-FUNDED PROJECTS THAT
ARE RELATED TO ADDRESSING THE
NEEDS OF PEOPLE WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES, INCLUDING FASD.
ACL'S MISSION IS TO MAXIMIZE THE
INDEPENDENCE, WELL-BEING, AND
HEALTH OF OLDER ADULTS, PEOPLE
WITH DISABILITIES ACROSS THE
LIFESPAN, AND THEIR FAMILIES AND
CAREGIVERS.
ACL HAS FOUR MAJOR COMPONENTS.
ONE IS NIDILRR, THE NATIONAL
INSTITUTE ON DISABILITY,
INDEPENDENT LIVING, AND
REHABILITATION RESEARCH, AND
THIS IS THE SCIENCE SIDE OF ACL.
THE ADMINISTRATION ON
DISABILITY.
THE CENTER FOR INNOVATION AND
PARTNERSHIP.
AND THE ADMINISTRATION ON AGING.
THE MISSION OF NIDILRR IS TO
GENERATE NEW KNOWLEDGE AND TO
PROMOTE ITS EFFECTIVE USE TO
MAXIMIZE THE FULL INCLUSION AND
INTEGRATION INTO SOCIETY,
EMPLOYMENT, INDEPENDENT LIVING,
FAMILY SUPPORT, AND ECONOMIC AND
SOCIAL SELF-SUFFICIENCY OF
INDIVIDUALS WITH DISABILITIES OF
ALL AGES.
NIDILRR ACHIEVES THIS MISSION BY
INVESTING IN REHABILITATION
RESEARCH THAT IS TIED CLOSELY TO
LONGER TERM OUTCOMES SUCH AS
INDEPENDENCE, COMMUNITY
PARTICIPATION, AND EMPLOYMENT.
NIDILRR UNIQUELY FOCUSES ON THE
WHOLE PERSON WITH A DISABILITY,
WHOSE ABILITY TO FUNCTION AND
QUALITY OF LIFE ARE DEPENDENT ON
THE COMPLEX INTERACTIONS AMONG
PERSONAL, SOCIETAL AND
ENVIRONMENTAL FACTORS.
NIDILRR INCLUDES IN ITS TARGET
POPULATION ALL AGE GROUPS AND
ALL DISABILITY TYPES.
INCLUDING FASD.
I'LL START WITH SOME NEW
RESEARCH GRANTS INTENDED TO
IMPROVE EMPLOYMENT OUTCOMES FOR
PEOPLE WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
RESEARCHERS AT CORNELL
UNIVERSITY ARE CONDUCTING THE
WORK FOR THE FIRST EXAMPLE.
THE PURPOSE OF THIS PROJECT IS
TO LEARN HOW THE PUBLIC
VOCATIONAL REHABILITATION OR VR
PROGRAM CAN EFFECTIVELY SERVE
OUT OF SCHOOL YOUTH AGES 16 TO
24 WITH INTELLECTUAL,
DEVELOPMENTAL AND MENTAL HEALTH
DISABILITIES WHO ARE INVOLVED IN
THE JUSTICE AND/OR FOSTER CARE
SYSTEMS.
THIS RESEARCH ALSO EXAMINES
UNIQUE CONSIDERATIONS PERTAINING
TO THE ONGOING COVID-19 PANDEMIC
AND SUBSEQUENT ECONOMIC DOWNTURN
WHICH HAVE CREATED AN EVEN MORE
PRESSING NEED TO ADDRESS THE
SERVICE GAPS FOR THESE YOUTH.
RESEARCHERS AT THE UNIVERSITY OF
KANSAS ARE USING
EMPLOYMENT-RELATED GRANT FUNDS
TO RESEARCH THE FEASIBILITY,
EFFICACY, AND COST-EFFECTIVENESS
OF IMPLEMENTING A CAREER DESIGN
INTERVENTION THAT USES
TELEHEALTH FOR RURAL DWELLING
ADULTS WITH IDD.
THE INTERVENTION USES THE
SELF-DETERMINED CAREER DESIGN
MODEL, AN EVIDENCE-BASED
INTERVENTION DESIGNED FOR PEOPLE
WITH IDD.
RESEARCHERS HAVE DEMONSTRATED
THAT THE SDCDM IS EFFECTIVE IN
PROMOTING SELF-DETERMINATION AND
EMPLOYMENT.
AND THEY WILL BE TRANSLATING
THIS MODEL INTO A VIRTUAL
SETTING.
NEXT I'LL DESCRIBE SOME RESEARCH
GRANTS INTENDED TO IMPROVE
HEALTH AND FUNCTION OUTCOMES FOR
PEOPLE WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
THE FIRST HEALTH AND FUNCTION
EXAMPLE CONDUCTED AT THE
VIRGINIA COMMONWEALTH UNIVERSITY
INVOLVES AN EXAMINATION OF THE
IMPACT OF COVID-19 PANDEMIC AND
RELATED POLICY SHIFTS ON PEOPLE
WITH IDD AND THE SERVICES AND
SUPPORTS THEY RELY ON TO LIVE
INDEPENDENTLY IN THE COMMUNITY.
THIS RESEARCH MERGES FOUR MAJOR
DATASETS, EACH OF WHICH PROVIDES
UNIQUE AND IMPORTANT INSIGHT
INTO THE RELATIONSHIP BETWEEN
MEDICAID UTILIZATION, A PERSON'S
SUPPORT NEEDS, AND PERSONAL AND
SYSTEMS LEVEL OUTCOMES FOR
PEOPLE WITH IDD.
THE ULTIMATE AIM OF THIS PROJECT
IS NOT ONLY TO INFORM STATE IDD
SYSTEM ADMINISTRATORS AND
ADVOCATES IN VIRGINIA, BUT TO
PROVIDE A BLUEPRINT FOR OTHER
STATES TO FOLLOW, TO GAIN BETTER
INSIGHT INTO HOW THEIR OWN
MEDICAID SERVICES TRANSLATE TO
OUTCOMES.
AS SUCH, FINDINGS, PROCESSES AND
CODE WILL BE AVAILABLE TO
STAKEHOLDERS IN OTHER STATES.
THE SECOND HEALTH AND FUNCTION
EXAMPLE IS BEING CONDUCTED AT
BRANDEIS UNIVERSITY'S LURIE
INSTITUTE ON DISABILITY POLICY.
THEIR NATIONAL CENTER FOR
DISABILITY AND PREGNANCY
RESEARCH HAS SEVERAL RESEARCH
PROJECTS RELATED TO DISABILITY
AND PREGNANCY.
BECAUSE PEOPLE WITH IDD HAVE A
GREATER LIKELIHOOD OF HAVING
SEVERE MENTAL HEALTH CHALLENGES
COMPARED TO THEIR PEERS WITHOUT
DISABILITIES, ONE OF THEIR
PROJECTS IS ADAPTING AND TESTING
THE RELIABILITY OF THE EDINBURGH
POSTNATAL DEPRESSION SCALE FOR
PEOPLE WITH IDD.
NEXT I'LL DESCRIBE SOME RESEARCH
GRANTS INTENDED TO IMPROVE
COMMUNITY PARTICIPATION FOR
PEOPLE WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES.
THE FIRST COMMUNITY LIVING AND
PARTICIPATION RESEARCH PROJECT
IS BEING CONDUCTED AT GEORGE
MASON UNIVERSITY.
THE ULTIMATE GOAL OF THE PROJECT
IS TO ALLOW NEURODIVERSE
INDIVIDUALS TO ACQUIRE OR
IMPROVE THEIR SELF-REGULATION
SKILLS AND ALLOW ASSISTANCE TO
ALSO GAIN A BETTER UNDERSTANDING
OF THE INTERVENTIONS.
THE PROJECT DEVELOPS AND
EVALUATES AN ASSISTIVE
SMARTWATCH APPLICATION THAT WILL
SUPPORT THE IMPROVEMENT OF
SELF-REGULATION SKILLS FOR
NEURODIVERSE YOUNG ADULTS IN
INDEPENDENT LIVING.
IT ALSO OFFERS DIRECT SUPPORT TO
NEURODIVERSE INDIVIDUALS AND
THEIR ASSISTANTS.
AND THIS OPTION GIVES A LESS
OBTRUSIVE APPROACH TO
SELF-REGULATION.
ANOTHER COMMUNITY LIVING AND
PARTICIPATION PROJECT CONDUCTED
AT THE UNIVERSITY OF ILLINOIS AT
CHICAGO IS DEVELOPING AND
RIGOROUSLY TESTING THE EFFICACY
OF AN ONLINE VERSION OF AN
EVIDENCE-BASED FUTURE PLANNING
INTERVENTION.
THE PRIMARY OUTCOMES OF THIS
PROJECT ARE TO INCREASE
PARTICIPATION IN FUTURE
PLANNING, TO INCREASE
SELF-DETERMINATION AND DAILY
CHOICE-MAKING OF THE PERSON WITH
IDD, AND TO DECREASE FAMILY
MEMBERS' FEELINGS OF CAREGIVER
BURDEN.
THE INTERVENTION INVOLVES
SELF-PACED MODULES PAIRED WITH
LIVE ZOOM SESSIONS TAUGHT BY
PEER TRAINERS OVER FIVE WEEKS.
THIS PROJECT IS CURRENTLY
RECRUITING FOR THIS RESEARCH.
SO IF YOU'RE INTERESTED, THERE'S
A LINK ON THIS PAGE WHERE YOU
CAN GET MORE INFORMATION.
FINALLY, I'D LIKE TO TELL YOU
ABOUT A FEW OTHER RELEVANT
RESOURCES FUNDED BY ACL.
FIRST IS THE NATIONAL CENTER ON
ADVANCING PERSON-CENTERED
PRACTICES AND SYSTEMS, OR NCATS.
THIS INITIATIVE IS SUPPORTED BY
ACL AND CMS JOINTLY.
THE PURPOSE OF NCATS IS TO HELP
STATES, TRIBES AND TERRITORIES
IMPLEMENT PERSON-CENTERED
THINKING, PLANNING AND PRACTICE
IN LINE WITH THE U.S. DEPARTMENT
OF HEALTH AND HUMAN SERVICES
POLICY.
THE SERVICES THEY PROVIDE ARE IN
DEPTH PRACTICAL TECHNICAL
ASSISTANCE, TOPIC-SPECIFIC
LEARNING COLLABORATIVES TO
PROMOTE BROAD BASED LEARNING AND
SHARING OF BEST PRACTICES,
MONTHLY WEBINARS THAT ARE OPEN
TO THE PUBLIC, AND THEY MAINTAIN
A NATIONAL CLEARINGHOUSE OF
ACTIONABLE UP TO DATE RESOURCES,
AND THEY CONTINUOUSLY WORK TO
INTEGRATE THE VOICE OF PEOPLE
WITH LIVED EXPERIENCE OF
DISABILITY AN IN OLDER ADULTS
WHO USE LONG-TERM SERVICES AND
SUPPORTS.
NEXT IS THE UNIVERSITY CENTERS
FOR EXCELLENCE IN DEVELOPMENTAL
DISABILITIES, OR UCEDDs.
ACL FUNDS CENTERS AT
UNIVERSITIES IN EVERY STATE AND
TERRITORY, AND THEIR PURPOSE TO
WORK TO IMPROVE THE HEALTH AND
WELL-BEING OF PEOPLE WITH IDD OR
DD BY TRAINING HEALTH
PROFESSIONALS, CONDUCTING
CUTTING-EDGE RESEARCH, OFFERING
MODEL DIAGNOSTIC AND CLINICAL
SERVICES, AND PROVIDING
RESOURCES FOR INDIVIDUALS,
FAMILIES AND PROFESSIONALS.
LAST BUT NOT LEAST ARE THE
CENTERS FOR INDEPENDENT LIVING.
THESE ARE DESIGNED AND OPERATED
BY INDIVIDUALS WITH
DISABILITIES.
THEY PROVIDE INDEPENDENT LIVING
SERVICES FOR PEOPLE WITH
DISABILITIES.
AND THESE PROGRAMS PROVIDE
TOOLS, RESOURCES AND SUPPORTS
FOR INTEGRATING PEOPLE WITH
DISABILITIES FULLY INTO THEIR
COMMUNITIES TO PROMOTE EQUAL
OPPORTUNITIES,
SELF-DETERMINATION AND RESPECT.
SOME OF THESE SERVICES INCLUDE
CONNECTING TO LOCAL SERVICES,
ASSISTING WITH JOB SEARCHES,
TEACHING LOCAL TRANSIT SKILLS,
HELPING WITH ASSISTIVE
TECHNOLOGY, AND SCHOOL-TO-CAREER
TRANSITION, AMONG OTHER THINGS.
THANK YOU FOR YOUR INTEREST IN
ACL'S PROGRAMS RELATED TO FETAL
ALCOHOL SPECTRUM DISORDER.
I HOPE YOU FOUND IT USEFUL AND
INFORMATIVE.
>> HI, I'M CAITLIN CROSS-BARNET,
DIVISION DIRECTOR IN THE
RESEARCH AND EVALUATION GROUP AT
THE CENTER FOR MEDICARE AND
MEDICAID SERVICES INNOVATION
CENTER, AND I'M HERE TO SHARE
SOME OF WHAT'S BEEN HAPPENING AT
CMS.
SO I'M GOING TO PUT SOME
RESOURCES UP HERE FOR EVERYBODY
TO SEE.
WE HAVE DONE A LOT OF WORK
AROUND POSTPARTUM CARE AT CMS
RECENTLY, EXTENDING POSTPARTUM
CARE ALLOWS FOR ONGOING
TREATMENT FOR PEOPLE WHO MAY
HAVE AN ALCOHOL USE DISORDER,
ALSO HELPS CONNECT THEM TO
SERVICES THAT MAY BE HELPFUL FOR
THEMSELVES AND THEIR INFANTS.
WE HAVE A LEARNING SERIES ON
IMPROVING POSTPARTUM CARE PUT ON
BY THE CENTER FOR MEDICAID AND
CHP SERVICES, AND ALL OF THE
WEBINAR RECORDINGS AS WELL AS
OTHER RESOURCES ARE AVAILABLE AT
THE WEBSITE.
I HAVE THE LINKS UP HERE.
CMS ALSO HAS A MATERNITY CARE
ACTION PLAN THAT SPECIFICALLY
HAS DIRECTION ON EXPANDING
POSTPARTUM CARE TO A FULL YEAR
FOR MEDICAID BENEFICIARIES
RATHER THAN TERMINATING AT 60
DAYS, WHICH HAS BEEN THE PAST
POLICY.
THE AMERICAN RESCUE PLAN HAS
ALLOWED THIS EXPANSION.
AND THEIR FULL MATERNITY CARE
ACTION PLAN WHICH ALSO COVERS
MANY OTHER AREAS IS AVAILABLE ON
OUR WEBSITE AS WELL.
IF YOU ARE INTERESTED IN SEEING
A PRESENTATION ON SOME OF OUR
PAST WORK AROUND POSTPARTUM CARE
AND OUR LEARNINGS FROM THE
INNOVATION CENTER MODELS, AS
WELL AS AN EXPLANATION OF OUR
POSTPARTUM CARE PLAN, YOU CAN
FIND IT AT THE P2P POSTPARTUM
CONFERENCE THAT WAS PUT ON BY
OUR COLLEAGUES AT NIH.
OUR PRESENTATION IS FOR THE
RECORDING FOR THE SECOND DAY AT
4:30, AND IS AVAILABLE HERE.
WE ALSO HAVE TWO PROGRAMS AT THE
INNOVATION CENTER THAT DIRECTLY
TAKE ON ISSUES THAT CAN AFFECT
FASD AND DIAGNOSIS AND TREATMENT
AND ALSO FOR PREVENTING FASD BY
ADDRESSING ALCOHOL USE
DISORDERS.
ONE IS THE MATERNAL OPIOID
MISUSE MODEL, AND WE HAVE THE
WEBSITE FOR THAT HERE.
THE MATERNAL OPIOID MISUSE MODEL
IS DESIGNED TO CREATE INTEGRATED
CARE FOR PREGNANT AND POSTPARTUM
PEOPLE WITH AN OPIOID USE
DISORDER.
MANY OF THEM ALSO HAVE
CO-MORBID -- OTHER SUBSTANCE USE
DISORDERS.
AND WE ARE ABLE TO PROVIDE
RESOURCES TO HELP TREAT THAT AND
ALSO TO KEEP A SPECIAL EYE ON
THE INFANT AFTER BIRTH IN ORDER
TO BE ABLE TO DIAGNOSE ANY
PROBLEMS THAT ARE EVIDENT VERY
EARLY ON.
THE INTEGRATED CARE FOR KIDS
MODEL IS INTENDED TO PROVIDE, AS
THE NAME IMPLIES, INTEGRATED
CARE FOR KIDS THROUGH
INTEGRATING HEALTH-RELATED
SOCIAL SERVICES SUCH AS FOOD AND
HOUSING, EARLY CHILDHOOD
RESOURCES, IN ADDITION TO HEALTH
AND BEHAVIORAL HEALTHCARE,
PHYSICAL AND BEHAVIORAL
HEALTHCARE, AND PART OF THE GOAL
OF INTEGRATED CARE FOR KIDS IS
TO REALLY MAKE SURE ALL OF THAT
CARE IS INTEGRATED AND THAT
THERE ARE WAYS FOR PROVIDERS TO
COMMUNICATE FOR CARE
COORDINATION TO OCCUR IN A
CENTRALIZED WAY.
HOWEVER, DATA SHARING WHICH CAN
REALLY HELP FAMILIES THAT ARE
AFFECTED BY FASD TO GET THE
SOCIAL AND HEALTH RESOURCES THAT
THEY NEED CAN BE REALLY
DIFFICULT AND FROM BOTH THE
MATERNAL OPIOID MISUSE MODEL AND
INTEGRATED CARE FOR KIDS MODEL,
WE'VE NOTED SOME SPECIFIC AREAS
THAT MAKE DATA SHARING
DIFFICULT.
SPECIFICALLY LEGAL RESTRICTIONS,
SILOED BUSINESS PROCESSES IN
WHICH ORGANIZATIONS JUST OPERATE
VERY DIFFERENTLY AND AREN'T USED
TO SHARING AND COMMUNICATING
WITH ORGANIZATIONS THAT MIGHT
MAKE GOOD PARTNERS FOR PROVIDING
THE SERVICES OR MAKING SURE THAT
FAMILIES HAVE ACCESS TO ALL THE
SERVICES THEY NEED.
MANY DATA PLATFORMS ARE
INCOMPATIBLE EVEN WITHIN THE
HEALTH SYSTEM, MANY ELECTRONIC
HEALTH -- EHR PLATFORMS,
ELECTRONIC HEALTH RECORD
PLATFORMS ARE INCOMPATIBLE WITH
ONE ANOTHER.
MANY STAFF AGENCIES DON'T HAVE A
LOT OF STAFF BANDWIDTH, A
PROBLEM THAT WAS EXACERBATED BY
THE COVID-19 PANDEMIC.
THERE ARE MANY CHALLENGES TO
ESTABLISHING DATA USE
AGREEMENTS, INCLUDING LEGAL
RESTRICTIONS AND TIME, AND ALSO
JUST A LACK OF PRACTICE WITH IT
OR UNDERSTANDING OF THE
IMPORTANCE OF IT, AND THERE ARE
ALSO A LACK OF ESTABLISHED
PRACTICES FOR ACTUALLY USING
DATA TO IMPROVE CARE.
SO THOSE ARE SOME OF THE THINGS
THAT WE ARE WORKING ON TO TRY TO
HELP FAMILIES ACCESS THE CARE
THAT THEY NEED, GET EARLY
DIAGNOSIS FOR THEIR CHILDREN,
AND BE ABLE TO ACCESS ANY KIND
OF TREATMENT THEY NEED EITHER
FOR ALCOHOL USE DISORDER OR
TREATING CHILDREN WHO MAY BE
SHOWING SIGNS OF FASD AND BEING
ABLE TO COORDINATE THEIR CARE.
THANK YOU.
>> GOOD MORNING.
MY NAME IS DAWN LEVINSON, AND
I'M THE DEPUTY DIRECTOR OF THE
DIVISION OF HEALTHY START AND
PERINATAL SERVICES IN HRSA'S
MATERNAL AND CHILD HEALTH
BUREAU.
FORMERLY I WAS THE HEALTH LEAD.
I AM PLEASED TO PROVIDE SOME
UPDATES TODAY ON HRSA'S
INVESTMENT TO SUPPORT FASD
SCREENING AND INTERVENTION.
BEFORE I PROVIDE UPDATES, I'D
LIKE TO PROVIDE SOME CONTEXT BY
SHARING MCHB'S MISSION AND
STRATEGIC PLAN AND A SNAPSHOT OF
OUR FY 23 FUNDING FOR OUR
INTERNAL AND MATERNAL HEALTH
PORTFOLIO.
MCHB'S PROGRAM'S FUNDAMENTALLY
PROMOTE MENTAL HEALTH AND
WELL-BEING FOR MATERNAL AND
CHILD HEALTH POPULATIONS ACROSS
THE LIFESPAN.
OUR WORK SUPPORTS THE PRINCIPLE
THAT THERE IS NO HEALTH WITHOUT
MENTAL HEALTH.
MCHB RECENTLY LAUNCHED A NEW
STRATEGIC PLAN THAT WILL GUIDE
OUR WORK OVER THE NEXT 10 TO 15
YEARS.
THE PLAN SETS OUT FOUR GOALS
THAT SUPPORT OUR MISSION TO
IMPROVE THE HEALTH AND HEALTH AD
WELL-BEING OF OUR NATION'S
MOTHERS, CHILDREN AND FAMILIES.
THAT'S ACCESS, EQUITY, CAPACITY,
AND IMPACT.
IMPROVE ACCESS TO QUALITY
SERVICES, ADVANCE EQUITY, AND
STRENGTHEN THE MCH WORKFORCE TO
MEET FAMILIES' BEHAVIORAL HEALTH
NEEDS.
AND WE TRACK PERFORMANCE AND
OUTCOMES ACROSS DIVERSE MEASURES
TO MAXIMIZE IMPACT.
FOR FY 23, MCHB AS A WHOLE
RECEIVED A NEARLY $250 MILLION
INCREASE TO OUR BUDGET COMPARED
TO FY 22.
NOTABLY THE DIVISION OF HEALTHY
START AND PERINATAL SERVICES
RECEIVED A $58 MILLION INCREASE.
THIS IS THE DIVISION IN WHICH
OUR FASD INVESTMENT RESIDES.
THIS IS AN APPROXIMATELY 30%
INCREASE TO OUR MATERNAL AND
INFANT HEALTH PORTFOLIO.
YOU CAN SEE THE SIGNIFICANT
INCREASES WE RECEIVED ON THIS
SLIDE FOR THE ALLIANCE FOR
INNOVATION ON MATERNAL HEALTH,
OR AIM, FOR HEALTHY START, FOR
THE MATERNAL MENTAL HEALTH
HOTLINE, FOR SCREENING AND
TREATMENT FOR MATERNAL MENTAL
HEALTH AND SUBSTANCE USE
DISORDERS, FOR THE STATE
MATERNAL HEALTH INNOVATION
GRANTS AND 10 MILLION FOR A
BRAND NEW PROGRAM CALLED
INTEGRATED MATERNAL HEALTH
SERVICES.
AS A RESULT OF THE INCREASED
APPROPRIATIONS, WE CURRENTLY
HAVE FIVE OPEN FUNDING
OPPORTUNITIES CLOSING ON VARIOUS
DATES IN MAY AND JUNE.
FOR PROGRAM ELIGIBILITY AND
DETAILS, PLEASE VISIT
MCHB.HRSA.GOV/FUNDING.
MCHB'S FASD INVESTMENT IS THE
SUPPORTING FETAL ALCOHOL
SPECTRUM DISORDER SCREENING AND
INTERVENTION PROGRAM.
OUR AWARDEE CALLS IT THE SAFEST
CHOICE LEARNING COLLABORATIVE.
INITIALLY IT WAS A THREE-YEAR
PRIMARY CARE PROVIDER EDUCATION
PROGRAM THAT AIMS TO REDUCE THE
INCIDENCE OF PRENATAL ALCOHOL
EXPOSURE, AND IMPROVE OUTCOMES
IN CHILDREN WITH SUSPECTED OR
DIAGNOSED FASDs THROUGH THE
PROJECT MODEL.
THE PROGRAM WAS DESIGNED TO
REACH PROVIDERS IN STATES,
TERRITORIES, TRIBES, TRIBAL
ORGANIZATIONS OR COMMUNITIES
THAT HAVE HIGH RATES OF BINGE
DRINKING AMONG PREGNANT WOMEN,
AND ESPECIALLY IN RURAL AREAS.
BECAUSE OF PROVIDERS' INCREASED
INTEREST IN THIS TRAINING AND
TECHNICAL ASSISTANCE PROGRAM,
MCHB WAS ABLE TO AWARD A
SUPPLEMENTAL FOURTH YEAR OF
FUNDING.
THIS IS ALLOWING PROVIDERS WHO
HAVE BEEN ON THE WAIT LIST TO
ENROLL IN A THIRD COHORT OF THIS
LEARNING COLLABORATIVE.
THE COOPERATIVE AGREEMENT WAS
AWARDED TO BOSTON MEDICAL CENTER
IN PARTNERSHIP WITH THE
MINNESOTA BASE PROOF ALLIANCE
AND IT'S NOW IN PROJECT YEAR
THREE OF FOUR.
THERE ARE TWO KEY PROGRAM GOALS.
THE GOALS ARE: TO IMPROVE THE
ABILITY OF PRIMARY CARE
PROVIDERS SERVING PREGNANT WOMEN
TO SCREEN THEIR PATIENTS FOR
ALCOHOL USE, PROVIDE BRIEF
INTERVENTION, AND REFER HIGH
RISK PREGNANT WOMEN TO SPECIALTY
CARE.
AND SECONDLY, TO IMPROVE THE
ABILITY OF PROVIDERS SERVING
CHILDREN AND ADOLESCENTS TO
SCREEN THEIR PATIENTS FOR
PRENATAL ALCOHOL EXPOSURE AMONG
THOSE SUSPECTED OF FASD, AND TO
MANAGE AND PROVIDE REFERRALS TO
NECESSARY SERVICES FOR THOSE
IDENTIFIED WITH FASD.
PARTICIPATING PROVIDERS INCLUDE
PHYSICIANS, NURSE PRACTITIONERS,
NURSES, BEHAVIORAL HEALTH
SPECIALISTS, AND OTHER TEAM
MEMBERS IN A HEALTHCARE
PRACTICE.
CALLED THE SAFEST CHOICE
LEARNING COLLABORATIVE, THE
PROGRAM RECRUITS AND EDUCATES
HEALTHCARE TEAMS AT COMMUNITY
AND TRIBAL HEALTH CENTERS IN
RURAL, URBAN AND TRIBAL
COMMUNITIES IN NEW ENGLAND AND
THE UPPER MIDWEST THROUGH
YEAR-LONG PRENATAL AND PEDIATRIC
PROJECT ECHO COHORTS.
THE FIRST 10-SESSION COHORT
BEGAN IN JUNE 2021, AND ENDED IN
APRIL 2022.
THE SECOND COHORT STARTED IN MAY
2022 AND ENDS THIS MONTH, IN
APRIL 2023.
PARTICIPATING HEALTH CENTERS
RECEIVE A STIPEND, TECHNICAL
ASSISTANCE, A CERTIFICATE OF
COMPLETION, AND FREE
INTERPROFESSIONAL CE CREDITS.
IN ORDER TO HELP KEEP COHORTS
ENGAGED, SAFEST CHOICE CREATED
AND ADMINISTERED A BASELINE
NEEDS ASSESSMENT, CREATED A
CONFIRMATION OF COMMITMENT
LETTER FOR HEALTH CENTERS TO
SIGN, AND MET WITH CLINICS ON AN
ONGOING BASIS FOR CHECK-INS.
HERE'S A MAP OF WHERE OUR COHORT
1 PARTICIPATING PRACTICES ARE
LOCATED.
IN COHORT 1, SAFEST CHOICE
ENROLLED 15 COMMUNITY HEALTH
CENTERS WHICH INCLUDED 10
PRENATAL PRACTICES AND 12
PEDIATRIC PRACTICES FROM SEVEN
STATES: SOUTH DAKOTA,
MINNESOTA, IOWA, MICHIGAN,
MASSACHUSETTS, RHODE ISLAND AND
MAINE.
FIVE OF THE 22 PRACTICES WERE
TRIBAL HEALTH CLINICS.
AND NINE WERE FROM RURAL AREAS.
THERE ARE SEVERAL OTHERS THAT
SERVE TRIBAL COMMUNITIES.
HERE'S A MAP OF COHORT
2 PRACTICES.
IN COHORT 2, SAFEST CHOICE
ENROLLED 16 COMMUNITY HEALTH
CENTERS WHICH INCLUDED 11
PRENATAL AND 11 PEDIATRIC
PRACTICES FROM SEVEN STATES.
NORTH DAKOTA, SOUTH DAKOTA,
MINNESOTA, ILLINOIS,
MASSACHUSETTS, RHODE ISLAND AND
MAINE.
SIX OF THESE 22 PRACTICES ARE
TRIBAL HEALTH CLINICS AND SEVEN
ARE RURAL CLINICS.
ALSO INCLUDED IN COHORT 2 ARE
TWO SPECIAL PARTICIPANTS, ONE
FROM A LARGE MASSACHUSETTS-BASED
HOSPITAL SYSTEM AND ONE FROM THE
NORTH DAKOTA STATE DEPARTMENT OF
PUBLIC HEALTH.
FOR THE PROGRAM, THE CURRICULUM
INCLUDES AN HOUR-LONG
INTRODUCTORY WEBINAR ABOUT THE
FOUNDATIONAL SCIENCE OF FASD.
THE CORE CONTENT MODULE SEEN
HERE.
AT THOSE SESSIONS ALSO INCLUDE
ADDITIONAL EDUCATIONAL CONTENT
INCLUDING DEMONSTRATION VIDEOS
OF COMPLEX PATIENT CONVERSATIONS
AND INTERVIEWS WITH PEOPLE WITH
LIVED EXPERIENCE.
PARTICIPANTS ALSO ENGAGE IN
SKILLS PRACTICE, SMALL GROUP
WORK, POLLS, WORD CLOUDS, CASE
PRESENTATIONS, AND
CLINIC-SPECIFIC COMMUNITY
RESOURCE EXPEDITIONS.
FACULTY INCLUDE AN
INTERPROFESSIONAL GROUP.
NDs, RNs, LICENSED
INDEPENDENT CLINICAL SOCIAL
WORKERS, MIDWIVES, NURSE
PRACTITIONERS, AS WELL AS
DIVERSITY IN TERMS OF RACE AND
ETHNICITY, INCLUDING NATIVE
AMERICAN REPRESENTATION.
THE PROGRAM ALSO CONVENES AN
INTERPROFESSIONAL AND DIVERSE
12-MEMBER ADVISORY BOARD THAT
ADVISES ON CURRICULUM,
RECRUITMENT, DISSEMINATION, AND
SUSTAINABILITY.
THE BOARD MEETS FORMALLY AS A
GROUP ONCE A YEAR.
WELL, WE JUST REVIEWED THE
CONTENT ON THIS SLIDE, SO I WILL
MOVE ON.
DURING THE CASE PRESENTATIONS BY
THE HEALTH CENTERS, HERE ARE
SOME OF THE COMMON THEMES THAT
EMERGED.
FEAR, GUILT, SHAME, AND MIXED
MESSAGES ABOUT ALCOHOL USE
DURING PREGNANCY.
CULTURAL ISSUES AND FAMILY
DYNAMICS WHEN NAVIGATING A
PRENATAL ALCOHOL EXPOSURE
HISTORY.
AND I'LL LET YOU SKIM THE REST
HERE.
SAFEST CHOICE OFFERS
PARTICIPANTS A MENU OF T.A.
OPTIONS THAT INCLUDE PRACTICE
IMPROVEMENT STRATEGIES IN THE
AREAS OF SKILL BASED TRAINING,
APPROACHES TO SYSTEMS CHANGE
INCLUDING QUALITY IMPROVEMENT
STRATEGIES, AND IDENTIFYING AND
ACCESSING COMMUNITY RESOURCES.
IN ADDITION TO INDIVIDUAL T.A.,
GROUP-WIDE T.A. SESSIONS ARE
HELD FOR EACH COHORT ON THE
TOPICS OF CONTINGENCY
MANAGEMENT, TREATMENT FOR
ALCOHOL USE DISORDER,
MOTIVATIONAL INTERVIEWING,
DIAGNOSING IN FASD, INCLUDING
MEASURING FACIAL AND
NEUROBEHAVIORAL FEATURES, AND A
MEET YOUR CHAMPIONS PANEL THAT
INCLUDES PANELISTS FROM FASD
UNITED, CDC, THE AMERICAN
COLLEGE OF OBSTETRICIANS AND
GYNECOLOGISTS, AND THE AMERICAN
ACADEMY OF PEDIATRICS.
THE PROGRAM EVALUATION WILL
ASSESS THE PROCESS OF PROGRAM
IMPLEMENTATION AND OUTCOMES IN
THREE DIFFERENT COHORTS OF
COMMUNITY HEALTH CENTERS.
EVALUATORS ARE USING A MIXED
METHODS DESIGN AND A PRE/POST
STUDY TO EXAMINE PROVIDER
CHANGES IN FASD KNOWLEDGE,
SELF-EFFICACY, AND SELF-REPORTED
PRACTICE BEHAVIORS.
QUALITATIVE DATA COLLECTION
STRATEGIES INCLUDE INTERVIEWS,
FOCUS GROUPS AND PROGRAM
OBSERVATIONS.
THIS SLIDE SHOWS SOME
PRELIMINARY RESULTS OF COHORT 1.
THE PRE-SURVEY IS INTENDED TO
PROVIDE BASELINE INFORMATION OF
PARTICIPANTS' KNOWLEDGE,
SELF-EFFICACY AND PRACTICE AMONG
OTHER FACTORS, SUCH AS PROVIDER
BURNOUT, COVID-19 IMPACT, AND SO
ON.
THE PROGRAM PRE-SURVEY IS
FOLLOWED BY A MIDPOINT, PROGRAM
POST SURVEY AND THREE-MONTH
PROGRAM FOLLOW-UP TO PROVIDE
MEASURES OF IMPACT OF THE
PROGRAM ON PROVIDER OUTCOMES.
COHORT 1 HAS COMPLETED SURVEYS
AT ALL TIME POINTS.
I AM PLEASED TO REPORT THESE
VERY SUCCESSFUL PRELIMINARY
RESULTS FOR COHORT 1.
100% OF PARTICIPANTS AGREE THAT
THE PROGRAM INCREASED THEIR
KNOWLEDGE ABOUT THE HAZARDS OF
PRENATAL ALCOHOL EXPOSURE AND
OPTIONS FOR SCREENING FOR
ALCOHOL USE DURING PREGNANCY.
92% AGREE THAT THE PROGRAM
INCREASED THEIR KNOWLEDGE ABOUT
THE HAZARDS OF AND SCREENING FOR
PRENATAL ALCOHOL EXPOSURE AMONG
CHILDREN AND ADOLESCENTS
SUSPECTED OF HAVING AN FASD.
AND 100% OF PARTICIPANTS
REPORTED THAT, TO AT LEAST SOME
EXTENT, THEY PLAN TO USE THE
KNOWLEDGE AND SKILLS LEARNED IN
THIS TRAINING.
WE LOOK FORWARD TO PRESENTING
THE ADDITIONAL COHORT OUTCOMES
IN THE FUTURE.
DATA SUGGESTING THIS PROVIDER
TRAINING INCREASES PROVIDER FASD
KNOWLEDGE AND SELF-EFFICACY AND
PROMOTES IMPROVEMENTS IN
CLINICAL PRACTICE.
WITH THAT, I SAY THANK YOU FOR
YOUR TIME AND ATTENTION.
HERE IS MY CONTACT INFORMATION,
SHOULD YOU HAVE FOLLOW-UP
QUESTIONS.
AND WE ENCOURAGE YOU TO CONNECT
WITH HRSA.
HRSA IS ON FOUR SOCIAL MEDIA
PLATFORMS WITH THE ACCOUNT
HANDLE@HRSA.GOV.
ALSO PLEASE SIGN UP FOR HRSA'S
E-NEWS AND RECEIVE OUR PRESS
RELEASES AND NOTICES OF FUNDING
OPPORTUNITY.
YOU CAN ALSO VISIT HRSA.GOV FOR
MORE DETAILED INFORMATION ABOUT
OUR PROGRAMS.
THANK YOU.
>> HELLO.
NOW THANK YOU SO MUCH FOR YOUR
EXCELLENT PRESENTATIONS.
IT WAS VERY INFORMATIVE.
IT'S GREAT TO HEAR ABOUT NEW
PROGRAMS WHICH WE HAVE.
JUST AGAIN FOR PEOPLE WHO JUST
RECENTLY JOINED US, I'M TATIANA
BALACHOVA.
I'M SCIENTIFIC COORDINATOR AND
EXECUTIVE SECRETARY OF THE
ICCFASD, AND I HAVE PRIVILEGE TO
MODERATE OUR DISCUSSIONS OF
MEMBERS' REPORTS OF ACTIVITIES
FROM 2022.
FIRST I WOULD LIKE TO INTRODUCE
A COUPLE GUESTS WHO HAVE JOINED
US THIS MORNING.
AND WE ALSO HAVE A FEW OTHER
MEMBERS WHO HAVE JOINED US
LATER.
FOR ICCFASD MEMBERS, IF YOU SEE
I'M SPEAKING TO VIDEOCAST
PARTICIPANTS NOW, IF YOU SEE
THAT SOMEONE IS ICCFASD MEMBERS,
WE DO HAVE INFORMATION ABOUT
EACH MEMBER INCLUDING
BIOSKETCHES SO YOU CAN LOOK
ONLINE FOR THIS INFORMATION.
I JUST WANTED TO POINT THAT WE
DO HAVE DR. AMY BOARD WITH US.
SHE'S A CDC CENTER ON BIRTH
DEFECTS AND DEVELOPMENTAL
DISABILITIES.
SHE'S CO-LEADER OF ICCFASD'S
WORKING GROUP ON SCREENING AND
BRIEF INTERVENTION, AND SHE IS
WITH US TODAY DURING THIS
MEETING.
ALSO I WOULD LIKE TO INTRODUCE A
GUEST WHO WILL SPEAK DURING
SPECIAL PANEL TODAY, AND AGAIN
YOU HAVE -- YOU CAN SEE HER
BIOSKETCH ONLINE.
IT IS DR. KATHY HOTELLING,
CO-FOUNDER OF NORTH CAROLINA
FASD INFORMED GROUP, WHICH IS
THE ONLY NORTH CAROLINA
NON-PROFIT DEDICATED TO
INDIVIDUALS WITH FASD.
KATHY'S DAUGHTER IS 29 NOW, AND
SHE WAS DIAGNOSED AT AGE 10.
AND I HAVE PLEASURE TO KNOW AND
TO BE ABLE TO MEET KATHY AND HER
DAUGHTER PREVIOUSLY.
WELCOME AND THANK YOU SO MUCH
FOR JOINING US.
SO WITH THAT, I WOULD LIKE TO --
JUST A FEW REMINDERS.
EVERYBODY WHO IS ON VIDEOCAST,
PLEASE WOULD APPRECIATE IF YOU
CAN TURN YOUR CAMERA ON DURING
DISCUSSION PERIOD.
ALSO WHEN YOU SPEAK, TURN YOUR
MIC ON AND TURN IT OFF WHEN YOU
DON'T SPEAK.
PEOPLE ON VIDEOCAST, OUR GUESTS
ON VIDEOCAST, WE'RE HAPPY TO
HAVE YOU.
PLEASE, YOU MAY SEE A LITTLE BOX
WHERE YOU CAN ENTER YOUR LIVE
FEEDBACK.
YOU CAN INCLUDE YOUR COMMENTS,
YOU CAN INCLUDE YOUR QUESTIONS,
AND WE WILL DO OUR BEST TO BRING
IT BACK.
WE HAVE DR. BILL DUNTY AND ME
ASSIGNED TO TAKE YOUR QUESTIONS
AND ASK DURING OUR LIVE
DISCUSSIONS.
WITH THAT, WE MOVE NOW TO
DISCUSSION.
I INVITE QUESTIONS FROM OUR
MEMBERS AND GUESTS FROM ZOOM.
WHAT QUESTIONS YOU WOULD LIKE TO
ASK?
WHO WOULD LIKE TO GO FIRST?
>> TATIANA, WE DID RECEIVE A
QUESTION DURING THE SESSION,
THOUGH I'M NOT SURE IF IT REALLY
RELATES TO ANY OF THE
PRESENTATIONS THAT WE HEARD FROM
THIS MORNING.
MAYBE WHILE WE'RE WAITING FOR
QUESTIONS I COULD AT LEAST POSE
THAT ONE?
>> SURE, GO AHEAD.
>> OKAY.
LET'S SEE.
THIS IS A QUESTION FROM -- LOOKS
LIKE MR. CARL SABBATH.
AND HE'S WONDERING IF ANYONE IS
WORKING WITH CAN FASD ON
FASD-RELATED ISSUES.
I CAN TAKE A STAB AT THAT AND
THEN -- IF THERE ARE OTHERS THAT
WANT TO --
>> THANK YOU.
I CAN -- YEAH, BILL, I CAN
COMMENT THAT CAN FASD, IT'S
CANADA FETAL ALCOHOL SPECTRUM
DISORDERS NETWORK, THEIR WORK
INCLUDES RESEARCHERS, PRAK
PRACTITIONERS, GOVERNMENT
REPRESENTATIVES, PARTNERS ACROSS
CANADA, AND I JUST CAN COMMENT,
WE HAVE BEEN COLLABORATING WITH
CAN FASD AND KNOW VERY WELL THE
RESEARCH LEADERS, AND ALSO IN
ADDITION TO WHAT WE HAVE BEEN
DOING, AND I THINK, BILL, YOU
WILL PROBABLY COMMENT ON THIS AS
WELL BECAUSE THERE'S SO MANY
JOINT RESEARCH PROJECTS, BUT WE
ALSO HAVE -- TODAY, WE HAVE A
PANEL AND YOU CAN SEE THAT SOME
OF OUR PANEL PARTICIPANTS ARE
FROM CANADA.
WE HAVE BEEN WORKING VERY
CLOSELY WITH OUR CANADA
COLLEAGUES.
SO IF ANYBODY WANTS TO ADD TO
THIS, PLEASE GO AHEAD.
>> I WOULD JUST ADD THAT AS
TATIANA POINTED OUT, WE DO HAVE
INFORMATION EXCHANGES BETWEEN
NIAAA-FUNDED RESEARCHERS AND
THOSE THAT ARE PARTICIPATING IN
THE CAN FASD PROGRAM.
ONE THAT COMES TO MIND IS A
INTERACTION WITH DR. JOSLIN COOK
AT CAN FASD, AND SHE'S
PARTICIPATING IN NIAAA'S
CONSENSUS EFFORTS, WHICH IS A
MEETING TO BRING TOGETHER
RESEARCHERS TO COME UP WITH A
SINGLE RESEARCH DEFINITION FOR
NAD.
THAT'S AN INTERNATIONAL ACTIVITY
AND DR. COOK IS PART OF THAT.
>> THANK YOU.
I SEE A HAND RAISED.
PLEASE, KATHY, GO AHEAD.
>> FIRST I PUT UP MY CLAPPING
HAND.
I REALIZED THAT WAS NOT MY
QUESTION HAND.
THANK YOU FOR THE PRESENTATIONS
THIS MORNING.
I HAVE BEEN FOLLOWING CLOSELY
THE HRSA PROJECT AND LOOK
FORWARD TO SEE MORE INFORMATION
AND DATA ON THAT.
I HAD ONE QUESTION AND ONE
COMMENT.
THE QUESTION IS THAT SOMEONE
MENTIONED A TOOLBOX AND I DIDN'T
CATCH WHAT THAT TOOLBOX WAS.
AND THAT WAS, I THINK -- WELL,
I'M NOT SURE.
SHARON OR AMANDA MENTIONED THAT.
>> OKAY.
THANK YOU.
>> AND THEN I HAVE A COMMENT
AFTER THAT.
THANK YOU.
>> OKAY, THANK YOU.
SHARON OR AMANDA?
SHARON, YOU'RE MUTED.
PLEASE UNMUTE.
>> YES.
THAT'S ONE OF THE THINGS THAT WE
ARE WORKING -- WAIT A MINUTE.
SOMETHING HAS GONE WRONG WITH MY
TECHNOLOGY HERE.
OKAY.
WE ARE WORKING WITH SOME STATES,
WE'RE DEVELOPING SOME APPROACHES
THAT COULD BE USED BY SOCIAL
WORKERS WHEN THEY FIRST COME
INTO CONTACT WITH FAMILIES WHERE
THERE MAY HAVE BEEN RENATAL
EXPOSURE TO ALCOHOL.
AND SO THAT'S ONE OF THE THINGS
THAT WE'RE TRYING TO DO, IS TO
DEVELOP A SET OF WHAT YOU WANT
TO SAY HELPFUL HINTS ON WHAT
THEY CAN DO, WHAT WOULD BE
HELPFUL FOR THEM TO DO.
>> I DON'T KNOW IF YOU'RE AWARE
OF THE AMERICAN ACADEMY OF
PEDIATRICS DOES HAVE A VERY
EXTENSIVE, AND I MEAN DEEP, IT
GOES REALLY DEEP, INTO FASD AND
STARTING WITH SCREENING AND
REASONS TO SCREEN, DIAGNOSIS, ET
CETERA, TREATMENT, AND IT'S -- I
WOULD HATE TO SEE THE REPEATING
OF WORK THAT IS ALREADY OUT
THERE.
THERE IS ALSO TIP 58, WHICH I
BELIEVE -- I THINK IT'S 58,
WHICH I BELIEVE IS OUT OF PRINT
NOW, BUT THAT WAS FROM THE
CENTER FOR FASD EXCELLENCE.
AND THAT IS WONDERFUL.
SO I HOPE THAT THAT IS CONSULTED
ALSO.
ONE THING THAT I HAVE A COMMENT
ABOUT, AND THAT IS THAT THE
SPECIAL ISSUE THAT WAS
MENTIONED, I AM VERY, VERY
CONCERNED THAT WE CONTINUE TO
PUT ALCOHOL INTO JOURNAL
ARTICLES, DISCUSSIONS, ET
CETERA, WITH OTHER DRUGS.
OTHER DRUGS ARE EXTREMELY
IMPORTANT, AND I KNOW THERE ARE
TERATOGENS THAT WE CERTAINLY DO
NOT WANT OUR CHILDREN EXPOSED
TO, BUT THE REALITY IS, ALL OF
THOSE TERATOGENS OUTSHINE IN THE
PUBLIC EYE AND USUALLY THE
PROFESSIONAL EYE, OUTSHINE
ALCOHOL.
AND ALCOHOL IS 1 IN 20.
THE OTHER TERATOGENS CAN CAUSE
LEARNING DISABILITIES AND OTHER
PROBLEMS, BUT NOTHING, NOTHING
TO THE MAGNITUDE INCLUDING THE
REALITY OF THE LIFE LONG
DEVELOPMENTAL DISABILITY, AND
HAVING A CHILD WHO SUFFERS FROM
THIS, AND I -- IT'S -- IT'S
OVERWHELMING, WHAT SHE HAS TO DO
TO GET THROUGH A DAY.
AND IN SOME WAYS, SHE IS NOT --
IT'S A SPECTRUM, SHE IS NOT AS
AFFECTED BY OTHER -- AS OTHER
PEOPLE, BUT THE MORE WE PUT
EMPHASIS ON OPIOIDS, ET CETERA,
WE'RE LOSING THE REALITY THAT
THIS IS A PUBLIC HEALTH CRISIS.
ALCOHOL IS SOCIALLY ACCEPTABLE.
AND THE OTHERS AREN'T AND SO
THEY GET LOTS OF ATTENTION.
AND THIS WORRIES ME GREATLY.
I THINK THAT'S WHY WE DON'T HAVE
THE RESEARCH MONEY FOR IT.
AND I COULD SAY A LOT MORE BUT
I'M SUPPOSED TO BE BRIEF.
>> THANK YOU, KATHY, FOR YOUR
COMMENT.
I WANTED TO USE THE TIME WE
HAVE, A FEW MORE MINUTES, FOR
DISCUSSION.
I WANTED TO ASK A QUESTION JUST
SLIGHTLY DIFFERENT.
I KNOW THAT -- AND THIS QUESTION
IS TO YOU FOR CENTERS FOR
MEDICAID AND MEDICAID SERVICES,
I KNOW THAT YOU HAVE LONG TERM
HOME BASED AND COMMUNITY-BASED
SERVICES, SO A QUESTION ABOUT
ALSO USE OF OUTCOME DEFINITION
AND LOOKING AT QUALITY OF LIFE
FOR PEOPLE AND INDIVIDUALS WITH
DIFFERENT EXPERIENCES.
SO I JUST WANTED TO SEE HOW
FASD, IF YOU HAVE ANY
INFORMATION HOW THEY HAVE BEEN
REPRESENTED IN YOUR SERVICES,
AND IF YOU CAN COMMENT WHAT YOU
SEE COULD BE DONE FOR QUALITY OF
LIFE IN ADULTS WITH FASD.
>> THAT'S A REALLY GOOD QUESTION
AND I THINK KATHY WHO JUST
COMMENTED REALLY ADDRESSED A BIG
ISSUE, WHICH IS THAT THIS IS
SOMETHING THAT'S REALLY
UNDERDIAGNOSED AND OFTEN
MISDIAGNOSED.
WE'RE SEEING RIGHT NOW IN OUR
PEDIATRIC PROGRAM THAT KIDS WHO
HAVE SYMPTOMS OF AUTISM SPECTRUM
DISORDER OR ATTENTION
HYPERACTIVITY DISORDER ARE NOT
BEING SCREENED FOR FASD MUCH OF
THE TIME.
I THINK BECAUSE OF A LOT OF THE
STIGMA AROUND IT OR BECAUSE OF
UNFAMILIARITY OR DIFFICULTY WITH
THE DIAGNOSIS.
IT'S NOT AN AREA THAT'S PAID
ATTENTION TO THE WAY THAT IT
SHOULD BE ACROSS THE BOARD, YOU
KNOW, NOT LIMITED TO CMS AT ALL.
IF PEOPLE HAVE SOME KIND OF
COVERAGE RELATED TO DISABILITY,
THEIR SERVICES WOULD BE COVERED,
BUT THERE'S NOTHING THAT'S GOING
ON AT CMS RIGHT NOW SPECIFICALLY
TRACKING FASD OR ADULTS WITH
FASD.
I DON'T KNOW WHETHER AMANDA FROM
THE ASSOCIATION FOR COMMUNITY
LIVING HAS FURTHER INFORMATION
ABOUT THAT, IN THINKING ABOUT
HOW WE'RE SUPPORTING ADULTS WITH
DISABILITIES IN THE COMMUNITY,
BUT SHE MAY ACTUALLY HAVE A LOT
MORE INFORMATION THAN WE DO.
AMANDA, SORRY TO PUT YOU ON THE
SPOT.
>> UNFORTUNATELY WE DON'T HAVE
ANYTHING THAT'S SPECIFIC TO FASD
CURRENTLY.
I DEFINITELY AM CHAMPIONING THE
IDEA THAT FASD NEEDS MORE
ATTENTION FROM ACL SPECIFICALLY.
BUT NO, UNFORTUNATELY WE DON'T
HAVE ANYTHING THAT IS SPECIFIC
AT THIS POINT.
>> ALL RIGHT.
THANK YOU.
THANK YOU, SHARON, YOU'RE
RAISING YOUR HAND?
>> YEAH, I JUST WANTED TO SAY
THAT AT THE CHILDREN'S BUREAU,
ONE OF THE THINGS THAT I AM
WORKING ON, AS I SAID BEFORE,
WE'RE WORKING ON THIS WITH THE
CDC, WITH OUR PARTNER, THE CDC,
WE ARE TRYING TO END UP WITH A
DATA COLLECTION ABILITY ON FASD.
SO ONE OF THE TROUBLES IS IT'S
DIFFICULT AT THE VERY START WHEN
KIDS COME TO THE ATTENTION OF
THE CHILD WELFARE SYSTEM, IT'S
VERY DIFFICULT TO ASK THE RIGHT
QUESTION.
AND SO THAT'S ONE OF THE
PROBLEMS THAT WE HAVE, BUT WE
ARE WORKING WITH THAT AND WE
WOULD HOPE TO EVENTUALLY HAVE,
AS PART OF OUR DATA COLLECTION
SYSTEMS, WE HAVE THE ADOPTION
FOSTER CARE ANALYSIS AND
REPORTING SYSTEM OR AFCARS, AND
ALSO THE NATIONAL CHILD ABUSE
AND NEGLECT DATA SYSTEM, AND WE
WOULD LIKE TO HAVE THOSE HAVE
THIS INFORMATION ON WHETHER OR
NOT THIS CHILD HAS BEEN
PRENATALLY EXPOSED TO ALCOHOL.
BUT WE DON'T HAVE EXACTLY THE
RIGHT INFORMATION IN OUR DATA
SYSTEMS TO DO THAT.
BUT WE'RE WORKING ON IT.
>> ALL RIGHT, THANK YOU, SHARON,
FOR YOUR COMMENT.
I KNOW THERE ARE A FEW QUESTIONS
FROM VIDEOCAST.
CAN WE HAVE --
>> YEAH, HI, TATIANA.
SO WE HAVE A QUESTION.
FROM JACKIE WILLIE, DAWN, THIS
MIGHT BE A QUESTION FOR YOU TO
ANSWER.
HER QUESTION IS, ORCHIDS FASD
SERVICES OF WISCONSIN WORKED FOR
A YEAR TO TRY TO GET A PRENATAL
OR PEDIATRIC CLINIC IN THE STATE
OF WISCONSIN TO JOIN THE SAFEST
CHOICE LEARNING COLLABORATIVE
AND THEY HAD NO TAKERS.
AND SHE'S ASKING, IS THERE ANY
SUGGESTION ON HOW TO OVERCOME
THIS LACK OF INTEREST ABOUT FASD
IN WISCONSIN?
OR IN OTHER STATES.
>> THANK YOU, BILL, AND THANK
YOU, JACKIE, FOR THIS QUESTION.
WHAT I MIGHT SUGGEST IS, IF IT'S
ALL RIGHT WITH YOU, I CAN REPLY
VIA EMAIL TO THE SAFEST CHOICE
LEARNING COLLABORATIVE.
I THINK IT MIGHT BE USEFUL TO
TALK TO THEM TO DO JUST A QUICK
CONSULTATION TO GET SOME
TAILORED -- MAYBE TAILORED
MESSAGING THAT MIGHT BE
APPROPRIATE FOR PROVIDERS IN
WISCONSIN.
I THINK IT'S ALSO IMPORTANT TO
MENTION, YOU KNOW, JUST KIND OF
AS AN INCENTIVE SO TO SPEAK IS
THAT THIS PROGRAM DOES PROVIDE
INTERPROFESSIONAL CONTINUING
EDUCATION CREDIT FOR THE
PROVIDERS.
IT ALSO -- OKAY.
SORRY.
IT ALSO INCLUDES TECHNICAL
ASSISTANCE, A CERTIFICATE OF
COMPLETION, WHICH PROVIDERS
COULD FIND USEFUL TO KIND OF
DISTINGUISH THEIR CLINIC, AND
THEN THE OTHER THING THAT SAFEST
CHOICE DOES, THAT THE PROGRAM
DOES TO HELP KEEP PROVIDERS
ENGAGED IS THEY ADMINISTER A
BASELINE NEEDS ASSESSMENT, THEY
CREATE A CONFIRMATION OF
COMMITMENT LETTER TO KEEP THEM
ENGAGED, AND THEN THEY MEET WITH
CLINICS ON AN ONGOING BASIS FOR
CHECK-IN.
I GUESS WHAT I WOULD SAY IS
BECAUSE THERE'S BEEN GREAT
DEMAND FOR THIS PROGRAM, AND IN
OTHER AREAS, THIS PARTICULAR
PROGRAM PROVIDES SOME LEVEL OF
EXPERTISE AND TECHNICAL
ASSISTANCE THAT PRACTICES
WOULDN'T OTHERWISE BE ABLE TO
OBTAIN.
SO AGAIN, I'M HAPPY TO FOLLOW UP
VIA EMAIL TO CONNECT YOU TO GET
SOME TAILORED MESSAGING FROM THE
STATE OF WISCONSIN.
THANK YOU.
>> THANK YOU.
WE ARE SLIGHTLY BEHIND OF TIME,
WHICH WE ESTIMATED, WE WANT TO
TAKE A LITTLE BREAK.
WE HAVE A COUPLE MINUTES, IF WE
CAN HAVE ONE QUESTION, BILL, I
THINK YOU HAVE ANOTHER QUESTION
FROM VIDEOCAST.
LET TAKE ONE AND THEN WE WILL
HAVE JUST VERY BRIEF 5-MINUTES
BREAK.
>> SURE.
SO THIS QUESTION IS FROM KELLY
HENDERSON.
AND SHE WRITES GOOD MORNING, I
APOLOGIZE IF I MISSED THIS IN
THE INTRODUCTION BUT ARE THERE
OTHER FEDERAL PARTNERS IN THE
ICCFASD THAT ARE NOT REPRESENTED
HERE TODAY?
IN PARTICULAR, THE DEPARTMENT OF
EDUCATION, AND/OR THE DEPARTMENT
OF JUSTICE.
>> THANK YOU.
TRISH, WOULD YOU LIKE TO TAKE
THIS QUESTION?
>> I'M SORRY, COULD YOU REPEAT
THAT, BILL?
I WAS LOOKING, THERE'S ANOTHER
QUESTION IN THE MEETING CHAT
THAT I WAS MAKING SURE WE DIDN'T
SKIP.
>> OKAY.
LET ME ANSWER.
I'M SORRY, BUT PATIENT WAS ABOUT
DEPARTMENT OF EDUCATION AND
DEPARTMENT OF JUSTICE, IF THEY
PARTICIPATE ON COMMITTEE NOW.
UNFORTUNATELY WE DON'T HAVE
REPRESENTATIVES FROM THOSE
DEPARTMENTS, AND ICCFASD AT THIS
TIME.
WE DID HAVE REPRESENTATIVES FROM
BOTH DEPARTMENTS PREVIOUSLY AND
THEY HAVE BEEN VERY
SIGNIFICANTLY INVOLVED WITH
ICCFASD AND PARTICIPATED ON
WORKING GROUPS AND MADE
SIGNIFICANT IMPACT.
WE HOPE THEY WILL JOIN BUT THEY
HAVE NOT JOINED YET.
SO WE LOOK FORWARD AND WE REALLY
WOULD LIKE THEM TO JOIN AND
PARTICIPATE TOGETHER.
SO WITH THAT, LET ME BREAK FOR
BREAK.
SO IT'S 11:15 NOW.
WE HAVE FIVE-MINUTES BREAK,
PLEASE, AND COME BACK AT 11:20,
WE WILL CONTINUE AGENCIES'
PRESENTATIONS.
THANK YOU.
WE'LL CONTINUE WITH
PRESENTATIONS FROM AGENCIES
RIGHT NOW AND WE WILL CONTINUE
WITH DISCUSSION AFTER THE
SEGMENT OF PRESENTATIONS.
OUR AGENDA IS ONLINE.
PLEASE LOOK AT THE AGENDA.
WE'LL FOLLOW THE AGENDA AND TRY
TO STAY ON TIME.
THANK YOU SO MUCH.
WITH THAT, I TURN TO SHIN KIM OF
CDC.
MY NAME IS SHIN KIM AND I'M THE
TEAM LEAD FO IN THE DIVISION OF
BIRTH DEFECTS AND INFANT
DISORDERS.
TODAY I WILL BE HIGHLIGHTING THE
CDC ACTIVITIES.
FIRST I'LL BE STARTING WITH OUR
SURVEILLANCE WORK.
POLYSUBSTANCE USE IS COMMON
DURING PREGNANCY.
MORE THAN HALF OF PREGNANT WOMEN
WHO USED OPIOIDS FOR NON-MEDICAL
REASONS REPORTED DRINKING
ALCOHOL.
AND 74% OF WOMEN WHO CONTINUED
MARIJUANA USE BEFORE AND DURING
PREGNANCY ALSO SMOKED
CIGARETTES.
A SYSTEMATIC REVIEW RECENTLY
PUBLISHED BY CDC AUTHORS FOUND
THERE'S WIDE VARIATION IN U.S.
STUDIES ON POLYSUBSTANCE USE
DURING PREGNANCY THAT CAN
CONTRIBUTE TO WIDE PREVALENCE
ESTIMATES.
FUTURE EFFORTS TO CONSISTENTLY
DEFINE THE EXPOSURE AND BETTER
UNDERSTAND THE FACTORS THAT
INFLUENCE POLYSUBSTANCE USE IS
NEEDED.
WE CONTINUE TO ANALYZE DATA ON
ALCOHOL USE AND ALCOHOL
SCREENING AND BRIEF INTERVENTION
UTILIZATION INCLUDING THE
BEHAVIORAL RISK FACTOR
SURVEILLANCE SYSTEM, THE
NATIONAL SURVEY ON DRUG USE AND
HEALTH, THE PREGNANCY RISK
ASSESSMENT MONITORING SYSTEM.
IN A RECENT MMWR PUBLISHED IN
JANUARY OF THIS YEAR, WE EXAMINE
EXPERIENCES DURING PEOPLE'S MOST
RECENT HEALTHCARE VISIT WITHIN
THE PAST TWO YEARS, AND FOUND
THAT 80% OF PEOPLE WHO WERE
PREGNANT WERE ASKED ABOUT
ALCOHOL USE.
HOWEVER, OF THOSE WHO REPORTED
CURRENT DRINKING, ONLY 16% WERE
ADVISED TO QUIT OR REDUCE THEIR
USE.
THESE FINDINGS HIGHLIGHT MISSED
OPPORTUNITIES FOR EDUCATION IN
ALCOHOL SCREENING AND UTILIZE
STRATEGIES TO ADDRESS, RECOGNIZE
BARRIERS, AND TO HELP EXPAND
PREVENTION OF ALCOHOL USE DURING
PREGNANCY.
NEXT I'LL TALK ABOUT AWARENESS
AND PREVENTION ACTIVITIES.
TO ADDRESS CONCERNS RELATED TO
ALCOHOL SCREENING AND BRIEF
INTERVENTION, THE INTERAGENCY
COORDINATING COMMITTEE ON FETAL
ALCOHOL SPECTRUM DISORDERS, OR
ICCFASD, DEVELOPED A NEW WORKING
GROUP TO LOOK AT SCREENING AND
BRIEF INTERVENTION ACTIVITIES TO
EXCHANGE INFORMATION AND
RESOURCES, IDENTIFY GAPS AND
OPPORTUNITIES FOR IMPROVED
IMPLEMENTATION AND RESEARCH, AND
EXPAND COLLABORATION AND
PARTNERSHIP BETWEEN FEDERAL
AGENCIES RELATED TO SCREENING
AND BRIEF INTERVENTION SERVICES
AND REFERRAL TO TREATMENT WHEN
NECESSARY FOR PREGNANT AND
POSTPARTUM PEOPLE.
THIS COLLABORATIVE EFFORT IS IN
LINE WITH ONE OF THE ICCFASD'S
PRIORITY AREAS TO REDUCE ALCOHOL
USE EXPOSURE AND PREVALENCE OF
FETAL ALCOHOL SPECTRUM DISORDERS
AMONG U.S. CHILDREN.
CDC CURRENTLY HAS COOPERATIVE
AGREEMENTS IN PLACE WITH FOUR
HEALTH SYSTEMS OR UNIVERSITIES.
THESE PROJECTS FOCUS ON ALCOHOL
SCREENING AND BRIEF INTERVENTION
IMPLEMENTATION WITHIN HEALTH
SYSTEMS, PROVIDING WOMEN'S
HEALTH SERVICES WITH THE AIM OF
REDUCING EXCESSIVE ALCOHOL USE
AMONG WOMEN OF REPRODUCTIVE AGE.
SOME RESULTS OF THESE EFFORTS
INCLUDE IMPLEMENTATION OF
ALCOHOL SBI INTO 53 CENTERS IN A
VARIETY OF SETTINGS, TRAINING
1,259 CLINICAL STAFF ON SBI
DELIVERY AND IMPLEMENTATION,
SCREENING OVER 120,000 PATIENTS
FOR ALCOHOL USE, IMPLEMENTING
SBI IN DIFFERENT SETTINGS AND
MANAGEMENT STRUCTURES,
LEVERAGING TECHNOLOGY TO ENHANCE
ALCOHOL SCREENING AND BRIEF
INTERVENTION, AND ADAPTED
METHODS IN RESPONSE TO
CHALLENGES PRESENTED BY COVID-19
PANDEMIC.
CDC ALSO HAS A PROJECT CALLED
REAREDI SBI LOOKING AT ENHANCING
SCREENING AND BRIEF INTERVENTION
TO REDUCE DISPARITIES IN
PRENATAL ALCOHOL AND OTHER
SUBSTANCE EXPOSURE.
THE OBJECTIVE IS TO CONDUCT
FORMATIVE RESEARCH TO IDENTIFY
DISPARITIES AND ACCESS TO SBI
FOR PRENATAL AND POSTPARTUM
ALCOHOL AND OTHER SUBSTANCE USE
AND DEVELOP APPROPRIATE
COMMUNICATIONS MATERIALS FOR
FUTURE SBI PLANNING EFFORTS.
THIS PROJECT IS CONTRACTED BY
ACT ASSOCIATES AND IT STARTED IN
SEPTEMBER 2022 AND WILL END IN
SEPTEMBER 2024.
WE'RE CONSULTING WITH FASD
UNITED TO WORK WITH THREE TO
SEVEN NATIONAL GRASSROOTS
ORGANIZATIONS AND HEALTHCARE
PROVIDER ORGANIZATIONS TO
CONDUCT PROVIDER SURVEYS VIA
MEDSCAPE, INDIVIDUAL INTERVIEWS
WITH PROVIDERS, GRASS ROOT
ORGANIZATIONS, AND PEOPLE WITH
LIVED EXPERIENCE OF SUBSTANCE
USE DURING PREGNANCY, AND TO
CONDUCT FORMATIVE RESEARCH TO
GUIDE COMMUNICATION MATERIALS
AND FUTURE WORK IN SCREENING AND
BRIEF INTERVENTION.
WE'VE ALSO RECENTLY FUNDED A NEW
COOPERATIVE AGREEMENT WITH
NATIONAL PARTNERS TO ADDRESS
PRENATAL ALCOHOL AND OTHER
SUBSTANCE USE AND FETAL ALCOHOL
SPECTRUM DISORDERS.
THE COOPERATIVE AGREEMENT HAS
THREE COMPONENTS AND THE
PARTNERS UNDER EACH COMPONENT IS
LILISTED ON THE SLIDE.
THE PURPOSE IS TO BUILD A
COLLABORATIVE FRAME WORM OF
NATIONAL PARTNER ORGANIZATIONS
THAT CONTRIBUTIONS THAT
CONTRIBUTE TO REDUCING PRENATAL
ALCOHOL AND OTHER SUBSTANCE USE,
IMPROVE SUPPORT SERVICES AND
ACCESS TO CARE, AND IMPROVE
IDENTIFICATION AND HEALTH OF
CHILDREN AND FAMILIES LIVING
WITH FETAL ALCOHOL SYNDROME
DISORDERS.
WE HAVE A TWO-YEAR CONTRACT WITH
THE OAK RIDGE ASSOCIATED
UNIVERSITIES TO FORMALLY TEST
PREVIOUSLY DEVELOPED CONCEPTS,
DEVELOP FINAL PRODUCTS, AND
DEVELOP AND TEST MESSAGES FOR A
CDC GUIDE FOR FASD-RELATED
MESSAGING.
WE HAVE ADDITIONAL ONLOON ONLINE
COURSES, SUPPLEMENTAL LEARNING
AND OTHER RESOURCES ON OUR
WEBSITE AT
WWW.CDC.GOV/FASDTRAINING.
CDC HAS ALSO BEEN EXPLORING
OPPORTUNITIES TO CONDUCT
SURVEILLANCE OF CHILDREN WITH
FETAL ALCOHOL SPECTRUM
DISORDERS.
OUR ACTIVITIES EXPLORE DIFFERENT
APPROACHES TO UNDERSTAND THE
POPULATION OF CHILDREN WITH
FASDs.
WHICH INCLUDE CAREGIVER REPORTED
ESTIMATES, HEALTHCARE CLAIMS
DATABASES, AND CLINICAL
HEALTHCARE DATA.
THE NATIONAL SURVEY OF
CHILDREN'S HEALTH OR NSCH IS AN
ANNUAL CROSS-SECTIONAL SURVEY OF
CHILDREN'S HEALTH IN THE U.S.
DESIGNED TO PROVIDE BOTH
NATIONAL AND STATE LEVEL
ESTIMATES OF CHILDREN ZERO
THROUGH 17 YEARS OLD IN THE U.S.
IN COLLABORATION WITH HRSA.
WE RECENTLY ADDED THREE NEW
QUESTIONS ON FASD TO THE 2022
QUESTIONNAIRE.
THESE QUESTIONS ASK ABOUT PARENT
OR CAREGIVER REPORTED
RECOMMENDATION FOR FASD
EVALUATION, RECEIPT OF AN FASD
EVALUATION, AND DIAGNOSIS OF AN
FASD BY A HEALTHCARE PROVIDER.
DATA COLLECTION BEGAN IN SUMMER
OF 2022, AND DATA WILL BE
AVAILABLE TO SPONSORS IN THE
SUMMER OF 2023, AND MADE
PUBLICLY AVAILABLE IN FALL 2023.
CDC ALSO FUNDED A NEW
COOPERATIVE AGREEMENT THIS PAST
YEAR TO INFORM FUTURE
SURVEILLANCE ACTIVITIES RELATED
TO DOCUMENTATION OF FASD
DIAGNOSIS RELATED INFORMATION,
INCLUDING INFORMATION ABOUT
PRENATAL ALCOHOL EXPOSURE IN THE
HEALTH RECORD AND TO DESCRIBE
THE PATHWAYS AND PROCESSES FOR
FASD DIAGNOSIS.
INCLUDING THE SEQUENCE OF
HEALTHCARE ENCOUNTERS THAT
CHILDREN EXPERIENCE BEFORE
RECEIVING AN FASD DIAGNOSIS.
FUNDED RECIPIENTS ARE EMORY
UNIVERSITY, PARTNERING WITH
GEORGIA STATE UNIVERSITY AND
MATHEMATICA AND MINNESOTA
DEPARTMENT OF HEALTH PARTNERING
WITH PROOF ALLIANCE.
THANK YOU.
>> THANK YOU TO THE INTERAGENCY
COORDINATING COMMITTEE ON FETAL
ALCOHOL SPECTRUM DISORDERS
LEADERSHIP AND MEMBERSHIP FOR
THE OPPORTUNITY TO PRESENT
UPDATE ON BEHALF OF THE INDIAN
HEALTH SERVICE.
MY NAME IS TINA PETTARA-LAU, AND
I'M A MATERNAL CHILD HEALTH
CONSULTANT FOR THE IHS.
ALSO AN OB-GYN PROVIDING CARE IN
THE PHOENIX AREA IN BOTH URBAN
AND RURAL SETTINGS.
I APOLOGIZE I COULD NOT ATTEND
THIS MEETING AND I WILL BE ON A
PREVIOUSLY SCHEDULED SITE VISIT
TO THE NAVAJO AREA WITH THE
AMERICAN COLLEGE OF
OBSTETRICIANS AND GYNECOLOGISTS.
IHS IS THE FEDERAL AGENT IS THAT
PROVIDES DIRECT HEALTHCARE
SERVICES TO MEMBERS OF 574
FEDERALLY RECOGNIZED TRIBES
ACROSS 37 STATES SERVING
APPROXIMATELY 2.7 MILLION
AMERICAN IND INDIAN AND ALASKA
NATIVES.
IHS TRIBAL FACILITIES PROVIDE
SERVICES PRIMARILY UTILIZING A
COLLABORATIVE CARE MODEL WITH
PHYSICIANS AND CERTIFIED NURSE
MIDWIVES, SHARING IN THE CARE IN
THE MAJORITY OF PATIENTS WHO
BENEFIT FROM THE SKILLS OF EACH
DISLIN.
OTHER SITES UTILIZE A HOLISTIC
FAMILY MEDICINE MODEL TO
PRESERVE BIRTH IN VERY RURAL
SETTINGS.
IN BOTH MODELS NURSING IS
RECOGNIZED AND SUPPORTED AS A
CENTRAL PARTNER IN MATERNITY
CARE TEAM.
-- CONTINUES TO HIGHLIGHT
HEALTH INEQUITIES THAT MUST BE
URGENTLY ADDRESSED.
WE KNOW FROM THE REPORT BY THE
CENTERS FOR DISEASE CONTROL AND
PREVENTION IN 2022 THAT 80% OF
PREGNANCY RELATED DEATHS ARE
PREVENTABLE.
MENTAL HEALTH CONDITIONS DUE TO
SUICIDE OR SUBSTANCE USE AND
HEMORRHAGE WERE THE LEADING
CAUSES.
MORE THAN 50% OCCURRED
POSTPARTUM.
A SPECIFIC REVIEW OF AMERICAN
INDIAN AND ALASKA NATIVE DATA
FOUND IDENTICAL CAUSES OF DEATH.
IN 2022, THE MARCH OF DIMES
REPORTED THAT 24.2% OF NATIVE
WOMEN DO NOT RECEIVE ADEQUATE
PRENATAL CARE, 26.7% -- BABIES
WERE BORN IN AREAS OF LIMITED OR
NO ACCESS TO MATERNITY CARE,
KNOWN AS MATERNITY CARE DESERTS.
RECENT STUDY IN OBSTETRICS AND
GYNECOLOGY SHOW THAT FROM 2020
TO 2021, MORTALITY RATES DOUBLED
AMONG NATIVE AMERICAN AND ALASKA
NATIVE WOMEN WHO WERE PREGNANT
OR HAD GIVEN BIRTH WITHIN THE
PREVIOUS YEAR.
WE KNOW THAT BIRTHS BY NATIVE
PEOPLE OCCUR IN ALL 50 STATES
AND THE DISTRICT OF COLUMBIA.
26% OF THE NATIVE POPULATION
BIRTHS OCCUR -- PLANNED BIRTHS
OCCUR AT IHS OR TRIBAL
FACILITIES, 1% OF PLANNED BIRTHS
AT NINE FEDERAL FACILITIES AND
17.9% AT 11 TRIBAL FACILITIES.
AS MANY BIRTHS SITES ARE
MATERNITY CARE DESERTS IT IS
CHALLENGING TO OBTAIN SERVICES
FOR MENTAL HEALTH CONDITIONS OR
SUBSTANCE USE DISORDERS.
HISTORICAL TRAUMA AND SOCIAL
DETERMINANTS OF HEALTH SUCH AS
TRANSPORTATION FOR APPOINTMENTS,
SAFE HOUSING, ACCESS TO
ELECTRICITY OR CLEAN RUNNING
WATER CONTINUE TO
DISPROPORTIONATELY WIDEN GAPS
AND DISPARITIES IN MATERNAL
HEALTH OUTCOMES.
TO CLOSE THESE GAPS, THE IHS IS
USING AN INNOVATIVE
MULTIDISCIPLINARY APPROACH.
MATERNAL SUBSTANCE USE DISORDER
HAS SERIOUS NEGATIVE
CONSEQUENCES FOR BOTH PREGNANT
AND POSTPARTUM INDIVIDUALS AND
THEIR CHILDREN.
IHS IS WORKING TO STRENGTHEN
SUPPORTS AND GAIN ACCESS TO
PRENATAL ADDICTION SERVICES FOR
INDIVIDUALS WITH SUBSTANCE USE
DISORDER BY EXPANDING ACCESS TO
MEDICATIONS FOR OPIOID USE
DISORDER FOR PREGNANT PEOPLE AND
WOMEN OF REPRODUCTIVE AGE AMONG
TRIBAL NATIONS AND TRIBAL
COMMUNITIES, PARTICULARLY IN
URBAN AREAS.
ALTHOUGH INCREASE -- AND ALSO
USING INCREASED AWARENESS AND
UTILIZATION OF THE
RECOMMENDATIONS TO THE INDIANS
HEALTH SERVICE ON AMERICAN
INDIAN AND ALASKA NATIVE
PREGNANT WOMEN AND WOMEN OF
CHILD BEARING AGE WITH OPIOID
INDUCED DISORDER.
IN JUNE 2022, THE NORTHWEST
PORTLAND AREA INDIAN HEALTH
BOARD ALONGSIDE INDIAN CARE
PROVIDER SUBJECT MATTER EXPERTS
AND INDIVIDUALS WITH LIVED
EXPERIENCE WORKED TOGETHER TO
CREATE THE PLANS OF SAFE CARE.
A PROVIDER GUIDE AND PATIENT
FACT SHEETS FOR PREGNANT AND
PARENTING PERSONS EXPERIENCING
SUBSTANCE USE DISORDERS.
THIS GUIDE OFFERS HEALTHCARE
PROVIDERS EVIDENCE-BASED
RECOMMENDATIONS FOR POTENTIAL
POINTS OF INTERVENTION AS WELL
AS CUSTOMIZABLE PATIENT
EDUCATION AND RESOURCES FOR
LOCAL USE.
MCH IS ALSO WORKING WITH IHS
NATIONAL COMMITTEE ON HEROIN,
OPIOID AND PAIN EFFORTS ALSO
KNOWN AS HOPE TO PROVIDE
EDUCATION TO THE FIELD THROUGH
WEBINARS ON SUBSTANCE USE
DISORDER.
ADDITIONALLY, IHS WILL PILOT A
MATERNITY CARE COORDINATOR
PROGRAM TO PROVIDE TELEHEALTH
AND HOME VISIT SUPPORT TO THE
PARENT AND CHILD DYAD FROM
PRECON SEMTION COUNSELING AND
PREGNANCY NAVIGATION TO
POSTPARTUM CONTINUITY OF CARE.
THIS INCREASES ACCESS TO PATIENT
CARE INCLUDING SCREENING,
EDUCATION, INTERVENTION AND
TREATMENT AND PROVIDES
ADDITIONAL SUPPORT TO SITES AND
HELPS GATHER FEEDBACK ABOUT
PATIENT EXPERIENCES AND
RESOURCES THAT ARE NEEDED IN THE
FIELD.
WE LOOK FORWARD TO CONTINUED
PARTNERSHIP THROUGH ICCFASD AND
CONVERSATION WITH OUR TRIBES AND
COMMUNITIES TO WORK TOGETHER TO
CLOSE GAPS IN MATERNITY CARE.
THANK YOU FOR THE OPPORTUNITY TO
PROVIDE UPDATES TODAY.
>> GOOD AFTERNOON.
WELCOME TO THE ICCFASD PUBLIC
MEETING FOR 2023.
I'M JON DUNBAR COOPER FROM
SAMHSA.
AT SAMHSA, WE HAVE EARLY
CHILDHOOD MENTAL HEALTH
PROGRAMS.
AS PART OF ITS MISSION TO REDUCE
THE IMPACT OF SUBSTANCE USE AND
MENTAL ILLNESS ON OUR
COMMUNITIES, SAMHSA FUNDS
PROGRAMS THAT PROMOTE AND
SUPPORT THE HEALTH AND WELLNESS
OF YOUNG CHILDREN.
ADDITIONALLY, THROUGH EARLY
CHILDHOOD GRANT FUNDING, SAMHSA
STRIVES TOWARDS A FUTURE WE ARE
ALL YOUNG CHILDREN HAVE THE
OPPORTUNITY TO THRIVE IN ALL
DOMAINS OF DEVELOPMENT,
PHYSICAL, COGNITIVE, SPIRITUAL,
EMOTIONAL, AND SOCIAL.
CAREGIVERS HAVE ACCESS TO
SUPPORTS AND SERVICES TO MEET
THE NEEDS OF YOUNG CHILDREN IN
THEIR CARE.
IN THE CONTEXT OF STRONG
CAREGIVER RELATIONSHIPS AND
NURTURING ENVIRONMENTS, YOUNG
CHILDREN CAN THEN THRIVE
SOCIALLY AND EMOTIONALLY,
BUILDING THEIR OWN RESILIENCE TO
SUPPORT LIFELONG MENTAL HEALTH.
HEALTHY CHILDREN AND FAMILIES
BUILD A HEALTHIER FUTURE FOR ALL
OF US AND OUR COMMUNITIES.
WE ALSO HAVE EARLY CHILDHOOD
MENTAL HEALTH PROGRAMS FOR VERY
YOUNG CHILDREN, FROM BIRTH TO
8 YEARS OF AGE, PROJECT LAUNCH,
AND WE ALSO HAVE A NATIVE
AMERICAN INDIAN AND ALASKA
NATIVE PROJECT LAUNCH PROGRAM
FROM BIRTH TO 8 YEARS OF AGE
WITHIN TRIBES, TERRITORIES, AND
PACIFIC ISLAND JURISDICTIONS, BY
ADDRESSING THE SOCIAL,
EMOTIONAL, COGNITIVE, PHYSICAL
AND BEHAVIORAL ASPECTS OF THEIR
DEVELOPMENT, PREPARING YOUNG
CHILDREN TO THRIVE IN SCHOOL AND
BEYOND.
THIS IS ANOTHER PROGRAM, INFANT
EARLY CHILDHOOD MENTAL HEALTH.
THIS PROGRAM IMPROVES OUTCOMES
FOR CHILDREN FROM BIRTH UP TO 12
YEARS OF AGE, BY DEVELOPING,
MAINTAINING OR ENHANCING INFANT
AND EARLY CHILDHOOD MENTAL
HEALTH PROMOTION, INTERVENTION,
AND TREATMENT SERVICES.
WE ALSO HAVE A CENTER OF
EXCELLENCE FOR INFANT AND EARLY
CHILDHOOD MENTAL HEALTH
CONSULTATION.
SAMHSA ALSO HAS A NATIONAL CHILD
TRAUMATIC STRESS INITIATIVE THAT
RAISES AWARENESS OF THE IMPACT
OF TRAUMA ON CHILDREN AND
ADOLESCENTS AS A BEHAVIORAL
HEALTH CONCERN REQUIRING A
HEALING AND RECOVERY PROCESS.
YOU CAN LEARN MORE ABOUT NCTSI
AT THE FOLLOWING LINKS.
RECOGNIZING AND TREATING CHILD
TRAUMATIC STRESS, SIGNS OF CHILD
TRAUMATIC STRESS, IMPACT ON
CHILDREN, TREATMENT OPTIONS AND
HOW FAMILIES AND CAREGIVERS CAN
HELP.
FIND RESEARCH AND SUPPORT FROM
OTHER ORGANIZATIONS ON TRAUMA.
IT IS ALSO AVAILABLE IN SPANISH.
SAMHSA HAS SCREENING AND BRIEF
INTERVENTION BOTH IN THE CENTER
FOR SUBSTANCE ABUSE PREVENTION
AND THE CENTER FOR SUBSTANCE
ABUSE TREATMENT.
SCREENING AND BRIEF INTERVENTION
IS A COMPREHENSIVE, INTEGRATED,
PUBLIC HEALTH APPROACH TO THE
DELIVERY OF EARLY INTERVENTION
AND TREATMENT SERVICES FOR
PERSONS WITH SUBSTANCE USE
DISORDERS AS WELL AS THOSE WHO
ARE AT RISK OF DEVELOPING THESE
DISORDERS.
PRIMARY CARE CENTERS, HOSPITAL
AND EMERGENCY ROOMS, TRAUMA
CENTERS AND OTHER COMMUNITY
SETTINGS PROVIDE OPPORTUNITIES
FOR EARLY INTERVENTION.
SAMHSA ALSO HAS SBIRT GRANTEES
SINCE 2003, IT HAS FUNDED 17
MEDICAL RESIDENCY COOPERATIVE
AGREEMENTS, 15 S 15 STATE COOPEE
AGREEMENTS, AND 12 TARGETED
CAPACITY EXPANSION CAMPUS
SCREENING AND BRIEF INTERVENTION
GRANTS.
THE FOLLOWING BULLETS CAN SHOW
YOU WHERE ON SAMHSA'S INTERNET
THAT YOU CAN FIND MORE
INFORMATION ABOUT EACH OF THESE
GRANTS.
ADDITIONAL RESOURCES ARE
AVAILABLE ONLINE OR BY CALLING
SAMHSA'S TOLL-FREE HELP LINE AT
800-662-HELP, OR GO TO THIS LINK
ON SAMHSA.GOV AND VIEW AVAILABLE
REIMBURSEMENT CODES AS WELL.
MEDICATIONS FOR SUBSTANCE USE
DISORDERS AT SAMHSA.
LEARN HOW MEDICATIONS CAN BE
USED TO TREAT SUBSTANCE USE
DISORDERS, AND SUSTAIN RECOVERY
AND PREVENT OVERDOSE.
THE USE OF MEDICATIONS IN
COMBINATION WITH COUNSELING AND
BEHAVIORAL THERAPIES TO PROVIDE
A WHOLE PATIENT APPROACH TO THE
TREATMENT OF SUBSTANCE USE
DISORDERS IS AN APPROACH AT THAT
SAMHSA PROMOTES.
MANY MEDICATIONS USED ARE
APPROVED BY THE FOOD AND DRUG
ADMINISTRATION AND ARE
CLINICALLY DRIVEN AND TAILORED
TO MEET EACH PATIENT'S NEEDS.
RESEARCH SHOWS THAT A
COMBINATION OF MEDICATION AND
THERAPY CAN SUCCESSFULLY TREAT
SUBSTANCE USE DISORDERS.
THE ULTIMATE GOAL IS FULL
RECOVERY.
THAT IS THE GOAL OF TREATMENT,
INCLUDING THE ABILITY TO LIVE A
SELF-DIRECTED LIFE.
THIS TREATMENT APPROACH HAS BEEN
SHOWN TO IMPROVE PATIENT
SURVIVAL, INCREASE RETENTION IN
TREATMENT, DECREASE ILLICIT
OPIATE USE AND OTHER CRIMINAL
ACTIVITY AMONG PEOPLE WITH
SUBSTANCE USE DISORDERS,
INCREASE PATIENTS' ABILITY TO
GAIN AND MAINTAIN EMPLOYMENT.
MEDICATIONS FOR SUBSTANCE USE
DISORDERS ALSO IMPROVE BIRTH
OUTCOMES AMONG WOMEN WHO HAVE
SUBSTANCE USE DISORDERS AND ARE
PREGNANT.
RESEARCH ALSO SHOWS THAT THESE
MEDICATIONS AND THERAPIES CAN
CONTRIBUTE TO LOWERING A
PERSON'S RISK OF CONTRACTING HIV
OR HEPATITIS C BY REDUCING THE
POTENTIAL FOR RELAPSE.
LEARN MORE ABOUT SUBSTANCE
MISUSE AND HOW IT RELATES TO
HIV, AIDS, AND VIRAL HEPATITIS,
AND ALSO LEARN MORE ABOUT
CO-OCCURRING DISORDERS AND OTHER
HEALTH CONDITIONS ON THE
SAMHSA.GOV WEBSITE.
THE FASD HAS ALSO APPROVED
SEVERAL DIFFERENT MEDICATIONS TO
TREAT ALCOHOL USE DISORDERS AND
OPIOID USE DISORDERS.
THESE MEDICATIONS RELIEVE
WITHDRAWAL SYMPTOMS AND
PSYCHOLOGICAL CRAVINGS THAT
CAUSE CHEMICAL IMBALANCES IN THE
BODY.
MEDICATIONS USED ARE
EVIDENCE-BASED TREATMENT OPTIONS
AND DO NOT JUST SUBSTITUTE ONE
DRUG FOR ANOTHER.
MEDICATIONS FOR ALCOHOL USE
DISORDER ALSO INCLUDES
ACAMPROSATE, DISULFIRAM AND
NALTREXONE.
THESE ARE THE MOST COMMON
MEDICATIONS USED TO TREAT
ALCOHOL USE DISORDER.
THEY DO NOT PROVIDE A CURE FOR
THE DISORDER BUT ARE MOST
EFFECTIVE FOR PEOPLE WHO
PARTICIPATE IN THE TREATMENT
PROGRAM.
ADDITIONAL RESOURCES INCLUDE THE
MEDICATION FOR TREATMENT OF
ALCOHOL USE DISORDER, A BRIEF
GUIDE, PUBLISHED IN 2015, AND
TIP 49, INCORPORATING ALCOHOL
PHARMACOTHERAPIES INTO MEDICAL
PRACTICE.
MEDICATIONS FOR OPIOID USE
DISORDER.
BUPRENORPHINE, METHADONE AND
NALTREXONE ARE THE MOST COMMON
MEDICATIONS USED TO TREAT OUD.
THESE MEDICATIONS OPERATE TO
NORMALIZE BRAIN CHEMISTRY, BLOCK
THE EUPHORIC EFFECTS OF ALCOHOL
AND OPIOIDS, RELIEVE
PHYSIOLOGICAL CRAVINGS, AND
NORMALIZE BODY FUNCTIONS WITHOUT
THE NEGATIVE AND EUPHORIC
EFFECTS OF THE SUBSTANCE USED.
NALOXONE IS USED TO PREVENT
OPIOID OVERDOSE BY REVERSING THE
TOXIC EFFECTS OF THE OVERDOSE.
ACCORDING TO THE WORLD HEALTH
ORGANIZATION, NALOXONE IS ONE OF
A NUMBER OF MEDICATIONS
CONSIDERED ESSENTIAL TO A
FUNCTIONING HEALTHCARE SYSTEM.
AND WE ALL HAVE TO REMEMBER,
MEDICATIONS AND CHILD SAFETY,
AND ADULT SAFETY INDEED SHOULD
BE KEPT AWAY FROM PEOPLE THAT
THE MEDICATION WAS NOT
PRESCRIBED FOR.
HARM REDUCTION AT SAMHSA.
HARM REDUCTION IS A PROACTIVE
AND EVIDENCE-BASED APPROACH TO
REDUCING NEGATIVE PERSONAL AND
PUBLIC HEALTH IMPACTS OF
BEHAVIOR ASSOCIATED WITH ALCOHOL
AND OTHER SUBSTANCE USE AT BOTH
THE INDIVIDUAL AND COMMUNITY
LEVELS.
PROVISIONAL DATA FROM CDC SHOW
THAT WE HAVE CROSSED THE TRAGIC
MILESTONE OF A PREDICTED 100,000
OVERDOSE DEATHS IN 12 MONTHS
FROM MAY 2020 TO APRIL 2021.
HARM REDUCTION'S PLACE IN AND
AMONG PREVENTION, TREATMENT AND
RECOVERY.
A COMPREHENSIVE PREVENTION
STRATEGY, HARM REDUCTION IS PART
OF THE CONTINUUM OF CARE.
HARM REDUCTION APPROACHES HAVE
BEEN PROVEN TO PREVENT DEATH,
INJURY, DISEASE, OVERDOSE AND
PREVENT SUBSTANCE MISUSE OR
DISORDER.
HARM REDUCTION IS AN EFFECTIVE
APPROACH TO ADDRESSING THE
PUBLIC HEALTH EPIDEMIC INVOLVING
SUBSTANCE MISUSE.
SAMHSA'S CURRENT AND FUTURE
SUPPORT FOR HARM REDUCTION.
SAMHSA HAS FUNDED 25 REDUCTION
GRANT PROGRAMS.
THIS FUNDING, AUTHORIZED BY THE
AMERICAN RESCUE PLAN, WILL HELP
TO INCREASE ACCESS TO A RANGE OF
COMMUNITY HARM REDUCTION
SERVICES AND SUPPORT HARM
REDUCTION SERVICE PROVIDERS AS
THEY WORK TO PREVENT OVERDOSE
DEATHS.
HERE ARE SOME RESOURCES FOR
SERIOUS MENTAL ILLNESS
TREATMENT.
THESE ARE ALL ON THE SAMHSA
WEBSITE.
INFORMATION ABOUT EARLY SERIOUS
MENTAL ILLNESS, SNAPSHOT OF
EARLY SERIOUS MENTAL ILLNESS,
PROGRAMS IN THE UNITED STATES IN
2018, INFORMATION ABOUT MENTAL
DISORDERS, GLOSSARY OF TERMS,
SUBSTANCE USE TREATMENT LOCATER,
BEHAVIORAL HEALTH TREATMENT,
EARLY MENTAL ILLNESS TREATMENT.
REGARDING TRAUMA AND VIOLENCE,
SAMHSA HAS THE DISASTER DISTRESS
HELP LINE.
PROVIDES 24/7, 365-DAY A YEAR
CRISIS COUNSELING.
CONTINUED ALSO AVAILABLE IN
SPANISH AND FOR THE DEAF AND
HARD OF HEARING.
SAMHSA PROMOTES EARLY
INTERVENTION AND TREATMENT AS
HEALTHIER ALTERNATIVES TO
DETAINING PEOPLE WITH BEHAVIORAL
HEALTH CONDITIONS IN THE U.S.
JUSTICE SYSTEM.
IN DOING THIS WORK, SAMHSA
RECOGNIZES THE BALANCE OF PUBLIC
HEALTH AND PUBLIC SAFETY
PRIORITIES.
REGARDING CRIMINAL JUSTICE FOR
JUVENILES, PEOPLE WITH MENTAL
AND SUBSTANCE USE DISORDERS ARE
OVERREPRESENTED IN THE JUSTICE
SYSTEM.
YOU CAN LEARN MORE ABOUT
CRIMINAL AND JUVENILE JUSTICE AT
SAMHSA.GOV AT THIS LINK BELOW.
SAMHSA'S CRIMINAL AND JUVENILE
JUSTICE CONTINUED.
LEARN ABOUT SAMHSA-FUNDED GRANT
PROGRAMS THAT ADDRESS BEHAVIORAL
HEALTH AND CRIMINAL JUSTICE
ISSUES.
LAW ENFORCEMENT AND BEHAVIORAL
HEALTH PARTNERSHIPS FOR EARLY
DIVERSION.
TRANSFORMING LIVES THROUGH
SUPPORTED EMPLOYMENT.
ADULT TREATMENT DRUG COURTS.
FAMILY TREATMENT COURTS.
OFFENDER RE-ENTRY PROGRAM.
SAMHSA ALSO HAS A SEQUENTIAL
INTERCEPT MODEL.
LEARN ABOUT THIS ESSENTIAL TOOL
THAT HELPS COMMUNITIES BETTER
SERVE INDIVIDUALS WITH MENTAL
AND SUBSTANCE USE PROBLEMS WHO
COME INTO CONTACT WITH THE
CRIMINAL JUSTICE SYSTEM.
WE ALSO HAVE RESOURCES FOR
SUICIDE PREVENTION.
THERE'S A TRANS LINE.
LIFELINE IS A NATIONAL TRANS-LED
ORGANIZATION DEDICATED TO
IMPROVING THE QUALITY OF TRANS
LIVES BY RESPONDING TO THE
CRITICAL NEEDS OF OUR COMMUNITY
WITH DIRECT SERVICE, MATERIAL
SUPPORT, ADVOCACY AND EDUCATION.
THE ZERO SUICIDE, THE
FOUNDATIONAL BELIEF OF ZERO
SUICIDE IS THAT SUICIDE DEATHS
FOR INDIVIDUALS UNDER THE CARE
OF HEALTH AND BEHAVIORAL HEALTH
SYSTEMS ARE PREVENTABLE.
WE ALSO HAVE THE BE THE 1 TO,
THE NATIONAL SUICIDE PREVENTION
LIFELINE'S MESSAGE FOR NATIONAL
SUICIDE PREVENTION MONTH AND
BEYOND, SPREADING THE WORD ABOUT
ACTIONS WE CAN ALL TAKE TO
PREVENT SUICIDE.
THANK YOU FOR TAKING THE TIME TO
ATTEND THIS PRESENTATION TODAY.
MY CONTACT INFORMATION IS BELOW.
>> HELLO.
MY NAME IS KRISTINA WEST.
AND I'M GOING TO TALK TODAY
ABOUT ASPE'S WORK IN FETAL
ALCOHOL SYNDROME DISORDER AND
FETAL ALCOHOL SYNDROME AND
ALCOHOL USE.
FIRST I WANTED TO TELL YOU A
LITTLE MORE ABOUT OUR OFFICE.
WHICH ADVISES THE SECRETARY ON
POLICY, AND PROVIDES ADVICE ON
ECONOMIC POLICY.
I WORK IN THE OFFICE OF
BEHAVIORAL HEALTH DISABILITY AND
AGING POLICY, WHICH INCLUDES
SUBSTANCE USE AND PRENATAL
SUBSTANCE EXPOSURES, INCLUDING
FETAL ALCOHOL SYNDROME DISORDER.
WE HAVE A LARGE PORTFOLIO OF
WORK AND WE HAVE COORDINATED
ACTIVITY -- CROSS-AGENCY
ACTIVITIES ACROSS THE DEPARTMENT
RELEVANT TO CHILD MENTAL HEALTH
AND SUBSTANCE USE.
SO FASD IS INCLUDED IN ASPE'S
BROAD SUBSTANCE USE PORTFOLIO,
INCLUDING THE RESEARCH WORK THAT
WE DO.
IN ADDITION, ASPE LEADS THE
FEDERAL PRENATAL SUBSTANCE
EXPOSURE WORK GROUP, WITH
REPRESENTATIVES ACROSS -- FROM
ACROSS HHS, AND THE WORK GROUP
SERVES AS A FORUM FOR FEDERAL
STAFF TO SHARE UPDATES AND GET
FEEDBACK ON PROPOSED PROGRAMS IN
SUD PREVENTION AND TREATMENT
INCLUDING ALCOHOL USE AMONG
PREGNANT AND POSTPARTUM WOMEN
AND REPRODUCTIVE AGE WOMEN.
BEFORE I CONTINUE, I WANT TO
ACKNOWLEDGE THAT THIS WEEK IS
BLACK MATERNAL HEALTH WEEK, AND
WE KNOW THAT BLACK WOMEN HAVE --
WITH SUD HAVE MORE BARRIERS TO
ACCESSING TREATMENT AND ACCESS
TREATMENT AT LOWER INTERVALS
THAN THE REST OF THE POPULATION.
AND IN THAT CONTEXT, IT'S
IMPORTANT TO THINK OF THOSE THAT
HAVE ALCOHOL USE DISORDER AND
HOW WE CAN IMPROVE ACCESS TO
TREATMENT FOR BLACK WOMEN WITH
ALCOHOL USE DISORDER AMONG OTHER
POPULATIONS.
SO THE NEXT ONE THAT WE DID THAT
I'M GOING TO PRESENT IS FINDINGS
FROM A RESEARCH STUDY ON
POSTPARTUM USE OF SERVICES
DEPENDING ON MEDICAID COVERAGE.
FOR THAT STUDY, WE USED A LARGE
MEDICAID CLAIMS DATASET FOR
THREE YEARS, AND WOMEN THAT HAD
LOST COVERAGE POSTPARTUM VERSUS
WITHIN 90 DAYS POSTPARTUM VERSUS
THOSE THAT HAVE NOT.
AND WHAT WE FOUND WAS THAT
BEHAVIORAL HEALTH USE WAS LOWER
AMONG THOSE WHO LOST MEDICAID
COVERAGE.
SPECIFICALLY THERE WAS LESS USE
OF OUTPATIENT VISITS FOR
SUBSTANCE USE DISORDER, LESS USE
OF MENTAL HEALTH-RELATED
OUTPATIENT VISITS, E.D. VISITS
AND LOWER USE OF ROUTINE
POSTPARTUM CARE.
FOR WOMEN WITH SUBSTANCE USE
DISORDER, WE INCLUDED THOSE
WOMEN WITH ALCOHOL USE DISORDER.
POSTPARTUM CARE HAS BEEN FOUND
BEFORE TO BE A GATEWAY TO
ACCESSING TREATMENT.
IN OUR STUDY, THE FINDINGS
SUGGEST THAT WHEN THERE'S NO
COVERAGE POSTPARTUM BEYOND THE
60 DAYS, THAT LIMITS ACCESS TO
POSTPARTUM CARE, IN ADDITION TO
LIMITED ACCESS TO TREATMENT.
THE IMPORTANCE OF THE STUDY IS
FOR THE POLICY IMPLICATIONS
WHICH HAVE TO DO WITH EXTENDING
POSTPARTUM COVERAGE IN MEDICAID.
AS YOU KNOW, THE AMERICAN RESCUE
PLAN AND CONSOLIDATED
APPROPRIATIONS ACT MOST RECENTLY
CREATED A PERMANENT OPTION FOR
MEDICAID IN STATES FOR MEDICAID
TO EXTEND POSTPARTUM COVERAGE TO
12 MONTHS.
THIS CAN REALLY CHANGE ACCESS TO
BEHAVIORAL HEALTH TREATMENT FOR
WOMEN WITH SUD, ESPECIALLY
BECAUSE MEDICAID COVERS 40% OF
ALL BIRTHS IN THE U.S., AND IS A
PARTNER IN BEHAVIORAL HEALTH
TREATMENT AS WELL.
NEXT I WILL TALK ABOUT WORK THAT
WE DID ON FETAL ALCOHOL SYNDROME
DISORDERS AND PSYCHOTROPIC
MEDICATION USE.
WE DID THAT WORK USING MEDICAID
AND COMMERCIAL CLAIMS DATABASES,
BUT THE REASON WHY WE DID THAT
IS BECAUSE OF LIMITED STUDYS
THAT HAVE BEEN DONE WITH
PSYCHOTROPIC MEDICATION AMONG
THIS POPULATION, DESPITE THE
FACT -- AND THE FACT THAT A LOT
OF THEM PARTICIPATE IN CHILD
WELFARE, AND PSYCHOTROPIC USE
HAS BEEN A CONCERN WITH THAT
POPULATION FOR YEARS.
SO WHAT WE DID IS THAT WE
SEPARATED THE SAMPLE BETWEEN
THOSE THAT WERE ON MEDICAID AND
PRIVATE INSURANCE.
THE BLUE COLUMN REPRESENTS KIDS
WITH FASD, WHICH MAY HAVE
CO-OCCURRING OR MAY NOT HAVE
CO-OCCURRING CONDITIONS.
AND AS YOU SEE SLIGHTLY MORE ON
MEDICAID USED PSYCHOTROPIC
MEDICATION.
THE ORANGE COLUMN ARE CHILDREN
WITH FASD AND CO-OCCURRING
MENTAL HEALTH DISOD THEY USED
PSYCHOTROPIC MEDICATIONS MOST
COMPARED TO THE OTHER GROUPS.
THE GREY ONE IS KIDS WITH FASD
AND NO CO-OCCURRING MENTAL
HEALTH CONDITION.
AND FOR THOSE THAT DON'T HAVE
MENTAL HEALTH CONDITION, 45% ON
MEDICAID USE PSYCHOTROPIC
MEDICATION.
THAT'S HIGHER THAN THOSE ON
PRIVATE INSURANCE WITH FASD ONLY
IN THE GREY COLUMN THAT USE
PSYCHOTROPIC MEDICATION, WHICH
IS ONLY 38%.
SO OVERALL, WE SEE SLIDE SLIETLY
HIGHER USE IN MEDICAID, BUT THE
DIFFERENCES ARE NOT DRAMATIC
BETWEEN THE TWO GROUPS, WHICH
MEA SUGGMAY SUGGEST DEEPER STRUL
ISSUES BEYOND INSURANCE
COVERAGE, TYPE OF INSURANCE
COVERAGE.
WE WANTED TO SEE WHAT
CO-OCCURRING MEDICAL CONDITIONS
OCCUR AMONG CHILDREN WITH FASD
USING PSYCHOTROPIC MEDICATION.
FIRST MOST COMMON WAS
ENCEPHALOPATHY.
AFTER THAT WAS ADHD.
ADHD IS QUITE COMMON AMONG
CHILDREN AND THERE HAVE BEEN
STUDIES SHOWING INCREASED
DIAGNOSIS, ESPECIALLY IN THE
WAKE OF COVID AND USE OF
PSYCHOTROPIC MEDICATION.
THE FACT THAT ADHD IS SO
COMMONLY SEEN AMONG THIS
POPULATION SUGGESTS THAT
CHILDREN WITH ADHD SHOULD BE
SCREENED FOR FETAL ALCOHOL
SYNDROME DISORDER, ESPECIALLY
BECAUSE MANY OF THOSE DISORDERS
ARE IDENTIFIED AT SCHOOL AGE AND
THERE ARE SCHOOL-BASED SUPPORTS
THAT PROVIDE SERVICES FOR
CHILDREN WITH DISABILITIES.
WE ALSO SEE HIGH PREVALENCE OF
EPILEPSY, ESPECIALLY AMONG KIDS
WITH MEDICAID, AND SOME OF THE
PSYCHOTROPIC MEDICATION CAN
ACTUALLY INCREASE THE THRESHOLD
FOR SEIZURES, SO THAT'S A
CONCERN IN TERMS OF MONITORING
PROPERTIES OF PSY PSYCHOTROPICS.
WE ALSO FOUND THAT ABOUT --
BETWEEN 20 AND 25% OF KIDS WITH
FASD USING PSYCHOTROPIC
MEDICATION ALSO HAVE AUTISM
SPECTRUM DISORDERS.
THERE ARE LARGER STUDIES IN THIS
POPULATION BUT THIS IS THE FIRST
LARGER ONE THAT FINDS THAT
PREVALENCE.
THE IMPLICATIONS OF THE STUDY IS
MOST IMPORTANTLY THAT
PSYCHOTROPIC USE AMONG KIDS WITH
FASD SHOULD BE MONITORED.
FOR SOME CHILDREN WITH FASD, THE
MANIFESTATIONS AND THE SYMPTOMS
REQUIRE -- MAY REQUIRE
PSYCHOTROPIC USE.
BUT THERE HAS TO BE ADMINISTERED
WITH PRUDENCE GIVEN THE RISK OF
SIDE EFFECTS.
PSYCHOTROPIC -- MOST IMPORTANTLY
PSYCHOTROPIC MEDICATION SHOULD
NOT BE A SUBSTITUTE FOR KNOWN FR
NON-PHARMACOLOGICAL INTERVENTION
AND WE HAVE STUDIES IN THE PAST
FEW YEARS LOOKING AT THE
EVIDENCE THAT HAVE ESTABLISHED
MORE EVIDENCE ON PSYCHOSOCIAL
INTERVENTIONS AND OTHER
INTERVENTIONS SUCH AS PARENT
EDUCATION, PARENT-CHILD
INTERACTION THERAPY, SCHOOL
INTERVENTIONS AND DEVELOPMENTAL
THERAPIES, WHICH SHOULD BE
ADMINISTERED TO THIS POPULATION.
ALONE OR TOGETHER WITH
PSYCHOTROPIC MEDICATION.
AND MOST IMPORTANTLY, THERE
NEEDS TO BE PROVIDER EDUCATION
ON THE JUDICIOUS USE OF
MEDICATION, ESPECIALLY
CONSIDERING THE HIGH PERCENTAGE
OF THOSE WITH FASD ONLY THAT ARE
USE BEING PSYCHOTROPICS.
AND FINALLY, I WANTED TO TALK
ABOUT TOPICS THAT ASPE IS
FOLLOWING IN RELATION TO FASD.
WE ARE VERY ESPECIALLY RELEVANT
TO BEHAVIORAL HEALTH SERVICE
USE, WHICH HAS THE UNMET NEED
FOR BEHAVIORAL HEALTH SERVICES
HAS INCREASED IN GENERAL AMONG
CHILDREN, BUT THERE IS LESS
KNOWN ABOUT THOSE WITH FASD.
WE ARE ALSO REALLY INTERESTED IN
FOLLOWING HEALTH EQUITY AND
ACCESS TO CARE I MENTIONED
EARLIER THAT THIS WEEK IS BLACK
MATERNAL HEALTH WEEK.
AND SO IT'S ESPECIALLY IMPORTANT
TO LOOK AT BLACK POPULATION OF
REPRODUCTIVE AGE WOMEN WITH SUD
AND PREVENTION AND TREATMENT.
WE ARE REALLY INTERESTED ALSO IN
THE PEDIATRIC MENTAL HEALTH
WORKFORCE CAPACITY TO DIAGNOSIS
FASD, AND TO TREAT THIS
POPULATION, AND FINALLY,
SCHOOL-BASED BEHAVIORAL HEALTH
SERVICES HAVE BEEN CRUCIAL IN
IDENTIFYING AND DELIVERING
SERVICES TO THIS POPULATION, AND
WITH THE -- POLICY ACT, WE SEE
THERE HAS BEEN ADDITIONAL
RESOURCES DEDICATED TO
SCHOOL-BASED BEHAVIORAL HEALTH
SERVICES WHICH ARE IMPORTANT.
SO THIS IS MY CONTACT
INFORMATION.
I'M HAPPY TO ANSWER ANY
QUESTIONS.
FEEL FREE TO REACH OUT.
THANK YOU.
>> THANK YOU, EVERYBODY, THANK
YOU FOR GREAT PRESENTATIONS.
IT IS VERY INTERESTING TO HEAR
ABOUT NEW RESEARCH ON MEDICATION
USE, PUBLIC POLICY RESEARCH, AND
CONTINUING EFFORTS TO INCREASE
EDUCATION IN PUBLIC AWARENESS,
AND I'M VERY EXCITED TO HEAR
ABOUT NEW CREATIONS ABOUT FASD
THAT CDC HAVE BEEN ABLE TO ADD
TO SURVEYS AND THE DATA WILL BE
AVAILABLE SOON.
WITH THAT, I WOULD LIKE TO OPEN
DISCUSSION.
PLEASE TURN ON YOUR CAMERAS.
WE APPRECIATE EVERYBODY, WE CAN
SEE EVERYONE ON CAMERA.
REMINDER FOR VIDEOCAST
PARTICIPANTS, YOU CAN SUBMIT
YOUR QUESTIONS AND COMMENTS ON
FORM ONLINE AND WE WILL DO OUR
BEST TO BRING TO THE MEETING.
WITH THAT, I WILL BEGIN
DISCUSSION AND I CAN SEE A HAND
RAISED.
DR. TRISH POWELL, PLEASE GO
AHEAD.
>> THANKS.
A COUPLE OF TIMES THE ISSUE OF
HEALTH EQUITY HAS BEEN RAISED,
AND IT'S BEEN RAISED BOTH ABOUT
SCREENING FOR PREVENTION AND
TREATMENT, AND THERE WAS A
RECENT STUDY THAT SAYS BLACK
WOMEN MAY BE SCREENED MORE FOR
SUBSTANCE USE
DISPROPORTIONATELY.
SO I WOULD JUST ENCOURAGE US ALL
TO THINK THAT WE REALLY WANT
SCREENING FOR EVERYBODY, SO THAT
WE'RE PROTECTING ALL CHILDREN
AND NOT TO INADVERTENTLY
STIGMATIZE, BUT THEN TO MAKE
SURE INTERVENTION AND TREATMENT
OPTIONS ARE AVAILABLE FOR ALL AS
WELL.
SO I JUST WANTED TO MAKE THAT
COMMENT THAT, YOU KNOW, THE
ISSUE OF NOT INCREASING STIGMA
AROUND IT, BUT TO MAKE SCREENING
JUST A NORMAL PROCEDURE FOR ALL
PREGNANT PEOPLE.
>> THANK YOU, TRISH.
THANK YOU FOR THE COMMENT.
I KNOW THERE ARE MORE QUESTIONS
AND COMMENTS.
DAWN LEVINSON, I THOUGHT YOU
WERE GOING TO --
>> THANK YOU.
THANKS, TATIANA.
YEAH, I WANTED TO -- BILL, I
KNOW THAT YOU'VE BEEN READING
THE QUESTIONS.
THERE WAS ONE -- I'M SCROLLING
THROUGH THE CHAT.
>> BILL, CAN YOU READ THE
QUESTION AND WE WILL LET DAWN
ANSWER?
>> SURE.
SO THIS IS A QUESTION FROM LIZ
MCCUE.
SHE SAID SHE WAS LISTENING
EARLIER AND ONLY HEARD ONE
DISCUSS SPECIFIC TRAINING FOR
CLINICIANS, IE, THE HRSA ECHO
PROJECT.
FOR THE OTHER SPEAKERS OR
PANELISTS, HAVE YOU AND YOUR
STAFF RECEIVED DETAILED TRAINING
ON FASD SPECIFICALLY TO HELP
IDENTIFY DIFFERENCES AND
APPROACHES FOR THIS POPULATION
RELATIVE TO THE PROGRAMS AND
YOUR INITIATIVES THAT YOUR TEAM
ARE WORKING ON, IT SEEMS IT IS
MORE A GENERAL APPROACH
PRESENTED ON IDD, ET CETERA, AS
WELL AS DRUGS RELATED, WHEN FASD
IS SPECIFIC AND DIFFERENT AND
NEEDS ITS OWN FOCUS IN THE
FUTURE.
>> THIS IS DAWN LEVINSON FROM
HRSA.
WHILE I DEFER TO MY OTHER
COLLEAGUES WHO MIGHT WANT TO
RESPOND, I GUESS I WANTED TO
FRAME A RESPONSE BY SAYING, YOU
KNOW, AS A REMINDER, MOST OF OUR
FEDERAL PROGRAMS FUND THINGS
THAT ARE LEGISLATIVELY REQUIRED
OF OUR AGENCIES, AND THAT HAVE
APPROPRIATIONS OR FUNDING
ATTACHED TO THEM, AND SO WITH
REGARD TO FASD-SPECIFIC
ACTIVITY, FOR OUR PROGRAM IN
HRSA, FOR EXAMPLE, WE HAVE A
LEGISLATIVE CALLOUT ACTUALLY IN
THE SPRANS, THE -- I'M BLANKING,
BUT OUR LEGISLATIVE REQUIREMENT
IN TITLE V, AND THERE IS A
CALLOUT FOR FASD SO THAT IS WHY
WE FUND FASD-SPECIFIC TRAININGS
BUT I DEFER TO MY OTHER
COLLEAGUES.
THANK YOU SO MUCH.
>> HI, THIS IS SHIN.
I CAN JUST -- AND I GUESS I'LL
LET MY OTHER TEAM MEMBERS ALSO
ADD IN IF THEY HAVE ANYTHING
ELSE TO SAY, BUT WE DO FUND THE
AMERICAN ACADEMY OF PEDIATRICS
AND THEY DO HAVE SEVERAL
TRAININGS.
WE HAVE ECHOs, WE ALSO HAVE A
RESIDENT TRAINING PROGRAM, AND
THERE ARE LOTS OF OTHER KIND OF
TRAININGS FOR CLINICIANS
SPECIFIC TO FASD.
BUT I WASN'T SURE IF MARY KATE
OR ELIZABETH, IF THERE'S
ANYTHING ELSE YOU WANTED TO ADD
RELATED TO THAT OR ANY OTHER
CLINICIAN-RELATED TRAININGS.
WE ALSO HAVE THE NATIONAL
PARTNERSHIP WORK WE'RE DOING
THAT IS VERY MUCH FOCUSED ON
TRAININGS FOR CLINICIANS.
>> THIS IS ELIZABETH DANG.
WE CONTINUE TO OFFER A COUPLE OF
TRAININGS ON OUR WEBSITE, IF YOU
GO TO CDC.GOV/FASD TRAINING, YOU
CAN FIND THOSE THAT HAVE BEEN
SPECIFICALLY DEVELOPED FOR
VARIOUS PROVIDER TYPES.
SOME OF THOSE CONTINUE TO OFFER
CONTINUING EDUCATION.
SO YOU CAN FIND MORE ONLINE
ABOUT THAT.
THE TRAININGS ARE FREE, AND THEN
THERE'S ALSO A DATABASE WITH
ABOUT 75 DIFFERENT RESOURCES
WHERE YOU CAN SEARCH BY PROVIDER
TYPE AND FIND RESOURCES THAT ARE
RELEVANT.
>> HELLO.
THE INDIAN HEALTH SERVICE ALSO
HAS A SERIES OF WEBINARS ON
FETAL ALCOHOL SPECTRUM DISORDERS
TO EDUCATE HEALTHCARE PROVIDERS
ON THE IMPACT OF FASD, IT ALSO
HAS SOME WEBINARS ON SCREENING,
AND ALSO RECOGNITION OF FASD.
WE ALL KNOW THAT ACCESS TO
SPECIALIZED TREATMENT SUCH AS
FASD IS A HUGE CHALLENGE IN
TRIBAL COMMUNITIES.
SO IHS IS CONSIDERING DIFFERENT
WAYS TO ADDRESS THAT CHALLENGE.
ONE EXAMPLE, WE HAVE A BIWEEKLY
PEDIATRICIAN CONSULTATION
CLINIC, WHICH IS FUNDED THROUGH
THE INDIAN CHILDREN'S PROGRAM
AND YOU CAN ACCESS THAT, AND
THIS IS SPECIFICALLY FOR
PROVIDERS.
THESE FUNDS ARE TO HELP ADDRESS
DEVELOPMENTAL DELAYS AND OTHER
ISSUES IN AMERICAN INDIAN AND
ALASKA NATIVE CHILDREN.
ANY PROVIDER WITH AN IHS OR ANY
OF THE INDIAN HEALTH SYSTEM,
WHICH INCLUDES TRIBAL AND URBAN
PROGRAMS, ANY PROVIDER WHO IS
TREATING A NATIVE YOUTH CAN CALL
IN TO THIS INDIAN CHILDREN'S
PROGRAM, WHICH CONSISTS OF A
PANEL OF EXPERTS AND GET A FREE
CONSULTATION.
WITH THIS CLINIC, IHS HOPES TO
HELP CHILDREN AND FAMILIES WITH
ISSUES THAT THEY EXPERIENCE,
INCLUDING FASD, AUTISM AND OTHER
NEUROLOGICAL DEVELOPMENTAL
DISORDERS, AND BRIDGE THE GAP
BETWEEN HEALTHCARE PROVIDERS AND
HEALTHCARE.
FOR ADDITIONAL INFORMATION ON
THAT, THERE IS THE -- GO TO
IHS.GOV/ICP, INDIAN CHILDREN'S
PROGRAM.
THANK YOU.
>> THANK YOU, J.P.
MARY KATE?
>> I JUST WANTED TO ADD, AS SHIN
SAID, WE'VE BEEN WORKING WITH
THE AAP FOR A NUMBER OF YEARS TO
PROVIDE TRAINING AND EDUCATION
TO PEDIATRIC PROVIDERS, AND IN
ADDITION TO THE PEDIATRIC ECHO
THAT WE'VE BEEN SUPPORTING AND
THE RESIDENT TRAINING PROGRAM,
WE ALSO HAVE -- AAP HAS
DEVELOPED A TOOLKIT THAT'S
ONLINE AND WE CAN DEFINITELY
DROP A LINK INTO THE CHAT HERE
FOR THAT, BUT YOU CAN JUST
GOOGLE AAP FASD AND YOU'LL GET
TO THE TOOLKIT AND THE VARIOUS
RESOURCES THAT THEY HAVE.
THEY ALSO DO AN ANNUAL WEBINAR
SERIES THAT ACTUALLY IS JUST
FINISHING UP AS PART OF ALCOHOL
AWARENESS MONTH THIS PAST MONTH.
>> THANK YOU VERY MUCH.
CHAD IS NOT AVAILABLE FORCHAT IR
VIDEOCAST PARTICIPANTS BUT
PLEASE GET IN TOUCH WITH ICCFASD
MEMBERS.
I CAN HAVE -- I CAN SEE A HAND
RAISED.
JON, GO AHEAD.
>> YES, HELLO.
SAMHSA DEVELOPED THROUGH THE
FASD CENTER FOR EXCELLENCE IN
DECEMBER 2013 ADDRESSING FETAL
ALCOHOL SPECTRUM DISORDERS, AND
THE AUDIENCE FOR THAT PARTICULAR
PUBLICATION ARE PREVENTION
PROFESSIONALS, PROGRAM
PROVIDERS, ADMINISTRATORS AND
PROJECT MANAGERS.
IT IS DOWNLOADABLE FROM THE
SAMHSA.GOV WEBSITE IN THE SAMHSA
STORE.
THE PROBLEM IS, IT WOULD NEED
PROBABLY A MASTER TRAINER ON TO
TRAIN PEOPLE, BUT SOMEBODY DID
MENTION AT THE BEGINNING OF THIS
MEETING TODAY ABOUT TIP 58, AND
SO I'M BRINGING IT UP AGAIN,
THAT IT IS THERE.
AND THIS GUIDE REVIEWS SCREENING
TOOLS TO ALCOHOL USE --
PRIMARILY WOMEN OF CHILD BEARING
AGE TO PREVENT FETAL ALCOHOL
SPECTRUM DISORDER, ALSO METHODS
FOR IDENTIFYING PEOPLE LIVING
WITH FASD AND MODIFYING
TREATMENT ACCORDINGLY.
THANK YOU.
>> THANK YOU.
ALL RIGHT.
WE HAVE TIME FOR QUESTIONS OR
COMMENTS.
ANYONE WANTS TO RAISE A QUESTION
OR COMMENT?
>> TATIANA, WE DID RECEIVE
ANOTHER QUESTION IN THE VIDEO
CHAT.
>> OKAY.
GO AHEAD, PLEASE.
>> AND THIS WOULD BE A QUESTION
TO JON OF SAMHSA.
THE QUESTION IS FROM DAN
DUBOFSKY, IS SAMHSA FUNDING
ANYTHING SPECIFICALLY ON
IDENTIFYING TREATING THOSE WITH
AN FASD?
>> CURRENTLY, SAMHSA IS NOT
FUNDING ANY INITIATIVE
SPECIFICALLY PERTAINING TO FASD.
>> OKAY, THANK YOU.
THANK YOU FOR THIS QUESTION.
ANY QUESTIONS?
I DO HAVE A QUESTION TO KRISTINA
TO ASK, YOU HAVE PUBLISHED
WONDERFUL MATERIALS BASED ON
YOUR PUBLIC POLICIES RESEARCH ON
FASD.
PUBLISHED ABOUT A YEAR AGO.
AND I JUST WONDER, HAVE YOU
HEARD FROM PRACTITIONERS FROM
STATES HOW THESE PUBLICATIONS
HAVE BEEN RECEIVED, AND WHAT DO
YOU EXPECT IS GOING TO HAPPEN
WITH YOUR PUBLICATIONS WHEN YOU
DESCRIBE THE CURRENT SITUATION
AND WHAT COULD BE DONE TO
IMPROVE SERVICES?
>> THANK YOU, TATIANA.
I THINK YOU'RE REFERRING TO THE
BRIEF THAT WE PUBLISHED A YEAR
AND A HALF AGO?
>> YES.
>> SO THOSE WERE BRIEFS WHERE WE
LOOKED AT STATE INITIATIVES AND
WHAT CAN STATES DO TO IMPROVE
ACCESS TO PREVENTION AND
TREATMENT.
SO FETAL ALCOHOL SYNDROME, WE
DISCUSS UNIVERSAL SCREENING AND
FINANCING.
WE PUBLISHED THIS ON OUR
WEBSITE.
I HAVE NOT HEARD DIRECT FEEDBACK
FROM THE COMMUNITY, FROM
INDIVIDUAL STATES.
AND I'M NOT SURE WHY, BUT I
THINK A LOT OF STATES' POLICIES
HAVE ALSO BEEN VERY MUCH FOCUSED
ON ADDRESSING COVID AT THE TIME
WHEN THESE BRIEFS WERE
PUBLISHED, AND I THINK PEOPLE
WERE STILL MORE IN THE EMERGENCY
MODE.
I FEEL LIKE JUST IN THE LAST ONE
YEAR, THINGS HAVE STARTED TO
CALM DOWN MORE.
FOR EXAMPLE, WE'RE STARTING TO
TALK -- FOR THOSE OF YOU
FOLLOWING THE EDUCATIONAL
RESOURCES, THERE IS GOING TO BE
A NEW TECHNICAL ASSISTANCE
CENTER THAT DEPARTMENT OF ED AND
CENTERS FOR MEDICARE AND
MEDICAID ARE SETTING UP RIGHT
NOW THAT'S GOING TO FOCUS ON
SCHOOL MENTAL HEALTH, AND THAT
CAN BE A PLACE WHERE SOME OF
THESE RESOURCES ARE DISTRIBUTED.
SO THAT'S ONE VENUE.
BUT I THINK THAT I'M HOPING TO
SEE MORE INTEREST NOW THAT THE
ATTENTION IS MORE ON PROVIDING
THESE SERVICES.
>> THANK YOU.
THANK YOU, KRISTINA.
THOSE BRIEFS HAVE BEEN EXCELLENT
AND YOU HAD GREAT MEETINGS WITH
EXPERTS.
I HOPE IT WILL GET MORE
ATTENTION.
I SEE ONE HAND BUT I JUST WANTED
TO REMIND EVERYONE THAT IT'S
TIME FOR LUNCH BREAK, AND
SHARON, I CAN GIVE YOU A
FEW SECONDS TO ANSWER YOUR
QUESTION OR MAKE YOUR COMMENTS.
>> OKAY.
WELL, I JUST WANTED TO POINT OUT
THAT IN THE CHILD WELFARE FIELD,
IT'S A LITTLE BIT DIFFERENT THAN
IT IS IN JUST THE GENERAL
MEDICAL FIELD.
IT'S TRUE THAT, YOU KNOW, WE DO
HAVE A LOT OF KNOWLEDGE ABOUT
THINGS THAT ARE GOING ON IN THE
AMERICAN ACADEMY OF PEDIATRICS
AND THE TIP SHEET AND ALL OF THAT
STUFF, BUT THERE ARE SPECIAL
PROBLEMS THAT WE HAVE IN THE
CHILD WELFARE FIELD.
ONE OF THEM IS THAT IN 13
STATES, IT'S CONSIDERED REASON
ENOUGH TO REMOVE A CHILD FROM
THE HOME AND PLACE THEM IN
FOSTER CARE, IF THEY'RE FOUND TO
HAVE BEEN PRENATALLY EXPOSED TO
A SUBSTANCE.
SO EVEN ASKING THE QUESTION CAN
BE A VERY FEAR-INSTILLING
PROBLEM, SO THE SOCIAL WORKERS
NEED SPECIAL KINDS OF TRAINING
AND EDUCATION IN HOW TO HANDLE
THIS PROBLEM.
SO I JUST WANTED TO POINT THAT
OUT AND THAT ACTUALLY GOES WAY
BACK TO THE QUESTION THAT WAS
ASKED BY ONE OF THE OTHER PEOPLE
EARLIER TODAY, EARLIER THIS
MORNING.
ABOUT DID WE KNOW ABOUT
THESE THINGS.
WELL, YES, WE DO KNOW ABOUT
THEM, BUT WE HAVE TO DO THINGS A
LITTLE BIT DIFFERENTLY IN THE
CHILD WELFARE FIELD BECAUSE OF
THE THINGS THAT WE KNOW ABOUT
THE SPECIAL PROBLEMS WITHIN
CHILD WELFARE.
>> THANK YOU, SHARON.
THANK YOU VERY MUCH.
VERY IMPORTANT COMMENT.
THANK YOU FOR A GREAT
DISCUSSION.
IT IS TIME TO BREAK FOR LUNCH.
PLEASE DURING LUNCH, TURN OFF
YOUR CAMERA, TURN OFF YOUR MIC.
WE WILL BE BACK AT 12:40, AND IT
WILL BE LIVE SESSION.
PLEASE BE ON TIME, COME A COUPLE
MINUTES BEFORE, AND WE WILL HEAR
FROM OUR PANEL OF LIVED
EXPERIENCES.
WE LOOK FORWARD TO HAVE YOU BACK
AT 12:40.
LUNCH BREAK.
THANK YOU.
>> WELCOME TO
THE SECOND PART OF THE MEETING.
I SEE PEOPLE ENTERING THE THE
ROOM. THANK YOU. WE CONTINUE OUR
MEETING NOW WITH SPECIAL PANEL
WHICH IS FOCUSED ON WHAT IS
WORKING IN OUR COMMUNITY, LESSON
LEARNED FROM LIVED EXPERIENCES.
WE KNOW THAT THERE'S SOME
SERVICES AND WE ARE HERE TODAY
ABOUT PROGRAMS AND SERVICES THAT
HAVE BEEN DEVELOPED BY DIFFERENT
AGENCIES AND WE REALLY WANT TO
HEAR FROM PEOPLE WITH LIVED
EXPERIENCES BECAUSE WE ARE AWARE
THAT SOME PROGRAMS WORK, SOME
PROGRAMS DON'T, WE STILL NEED
MORE SERVICES. WHAT WE WOULD
LIKE TO SEE, WE WOULD LIKE TO
LOOK AT WHAT IS WORKING, WHAT
HAS BEEN HELPING, WHAT HAS BEEN
MAKING DIFFERENCE. WE ARE
DELIGHTED TO BE JOINED BY OUR
INVITED GUEST SPEAKERSS. IT IS
PLEASURE TO INTRODUCE THE PANEL
MODERATOR, JAN LUTKE, WHO WILL
INTRODUCE THE PANEL SPEAKERS
WHEN WE COME TO THIS PART OF THE
PANEL DISCUSSION. VERY BRIEFLY I
WILL TELL ABOUT JAN. WE HAVE ALL
(INAUDIBLE) AVAILABLE ON LINE,
PLEASE LOOK AT OUR WEBSITE FOR
DETAILS. BUT I JUST NEED TO TELL
THIS ABOUT JAN BECAUSE SHE IS
INTERNATIONAL EXPERT WELL KNOWN
FOR HE WORK WITH INDIVIDUALS
WITH FASD AND FAMILIES. ONE FACT
I DEFINITELY WANT TO TELL IN
ADDITION TO MANY POSITIONS THAT
JAN HAS HAD AND COMMITTEES AND
PAPERS SHE WROTE, BUT I WANT TO
TELL THAT JAN HAS BEEN ADOPTED
22 CHILDREN FROM FOSTER CARE
INCLUDING 16 CHILDREN WITH FASD.
16 CHILDREN WITH FASD. AND NOW
THE AGE IS 32050. IN ADDITION
JAN HAS HELPED MANY OTHER
INDIVIDUALS WITH FASD. AND MANY
PROFESSIONALS WHO HAVE BEEN
WORKING IN THE FIELD AND HELP US
TO KNOW AND TO UNDERSTAND
BETTER. SO JAN WILL INTRODUCE
ALL THE SPEAKERS. I WILL BRIEFLY
INTRODUCE DR. CHRISTIE PETRENKO
BECAUSE SHE WILL BEGIN THIS
SESSION. SHE IS CLINICAL
PSYCHOLOGIST AND SCIENTIST AT
UNIVERSITY OF ROCHESTER IN NEW
YORK. SHE WILL SPEAK ABOUT HER
RESEARCH THAT ENGAGES
COMMUNITIES. THE USE OF THIS
TYPE OF RESEARCH WHEN WE ASK
COMMUNITIES, WHEN WE ASK PEOPLE
HAS BEEN REALLY INCREASING MORE
RECENTLY. AND DR. PETRENKO WILL
SPEAK ABOUT EVIDENCE FROM PUGH
STUDIES WHAT SHE LEARNED FROM
INDIVIDUALS WITH FASD. WITH
THAT, WELCOME DR. PETRENKO AND
WELCOME YOUR PRESENTATION.
>> THANK YOU, TATIANA FOR SUCH A
NICE INTRODUCTION. I'M GOING TO
SHARE MY SCREEN HERE AND GET THE
PRESENTATION STARTED. I WANT TO
THANK THE ICCFASD FOR INVITING
ME TO SPEAK TODAY AND I'M
LOOKING FORWARD TO THE PANEL
DISCUSSION ESPECIALLY AT THE
CONCLUSION OF MY PORTION AND I
JUST THINK IT IS GOING TO BE A
REALLY HELPFUL TOPIC FOR US ALL
TO HAVE TIME TO SPEAK ABOUT
TODAY. I AM GOING TO DO A BRIEF
INTERACTIVE ACTIVITY IN JUST A
BRIEF MINUTE. IF YOU HAVE YOUR
SMART PHONE CLOSE BY OR BROWSER
WINDOW AND WANT TO GO TO
MENTI.COM I WILL TELL YOU WHAT
TO DO NEXT IN TWO SLIDES. SO MY
GOAL FOR OUR TIME TOGETHER IS TO
BEGIN BY DEFINING AND GIVING
EXAMPLES OF WHAT WE MEAN WHEN WE
SAY COMMUNITY ENGAGED RESEARCH.
I ALSO AM GOING TO HIGHLIGHT
WHAT WORKS FROM FASD RESEARCH
AND THEN OFFER A FEW NEXT STEPS
AND FUTURE DIRECTIONS FOR
EVERYONE TO CONSIDER AND THEN WE
WILL MOVE ON TO OUR PANEL
DISCUSSION. SO HERE IS OUR
INTERACTIVE PART. INCLUDING
ANYONE WHO IS ON THE ZOOM AS
WELL AS THE WEBCAST, PLEASE GO
TO MENTI.COM AND YOU WILL SEE
THIS CODE HERE UP AT THE TOP OF
THE SCREEN. THESE NUMBERS
42704105. IF YOU ENTER THEN AT
THAT MENTI.COM WEBSITE YOU WILL
BE ASKED A QUESTION OF WHO IS IN
FASD COMMUNITY. AND TOGETHER WE
WILL BUILD A WORD CLOUD OF WHO
WE ALL CONSIDER AS PART OF THE
COMMUNITY. I'D LOVE TO DO THIS
TO GET US STARTED TODA TODA TODO
AHEAD AND ENTER THAT. YOU CAN
ENTER UP AS MANY AS FIVE ITEMS,
AS MANY TIMES AS YOU WANT. MAG
WEALREADY HAVE A FEW PEOPLE WITH
ITEMS COMING IN.
THE CLOUD IS GROWING, WE HAVE
PARENTS, FRIENDS, PEOPLE WITH
FASD. ADVOCATES, RESEARCHERS,
PROFESSIONALS. SCHOOLS.
SELF-ADVOCATES, CAREGIVERS.
ADOPTED FAMILIES BIOLOGICAL
FAMILIES, LEGISLATORS.
HEALTHCARE PROVIDERS. AND MANY
OTHERS. FEEL FREE TO KEEP ADDING
YOUR IDEAS AND I WILL COME BACK
AS WE FINISH OUR PRESENTATION, I
WILL COME BACK TO THE SLIDE AND
SEE WHERE WE ENDED UP. WE
ALREADY HAVE 31 PEOPLE WHO HAVE
RESPONDED. I WILL COME BACK AT
THE END. AS WE DEFINE COMMUNITY
ENGAGED RESEARCH I WANT TO SET
OUR FRAME WHO CAN DO RESEARCH.
AS I HAVE HERE OPT DEFINITION, A
RESEARCHER IS SOMEONE WHO HAS A
QUESTION AND WORKS TO
SYSTEMATICALLY TO ANSWER IT.
THIS DOESN'T NECESSARILY NEED TO
BE SOMEBODY WHO HAS A MASTERS OR
Ph.D. REALLY IT CAN BE ANYONE.
I ALSO WANT TO HIGHLIGHT PEOPLE
WITH LIVED AND LIVING
EXPERIENCES. THIS IS A PERSONAL
-- SOMEONE WHO HAS PERSONAL
KNOWLEDGE OF AN ISSUE DWAYNEED
THROUGH DIRECT EXPERIENCES.
THESE -- GAINED THROUGH DIRECT
EXPERIENCES. THE CATEGORIES
DON'T NEED TO BE MUTUALLY
EXCLUSIVE. ENGAGING PEOPLE WITH
FASD AND THE BROADER FASD
COMMUNITY HAS MANY ADVANTAGES TO
RESEARCH. SO ON THE NEXT SLIDE I
WILL SHARE A VARIETY OF WAYS WE
CAN DO THIS BUT THERE ARE MANY
WAYS TO BE CREATIVE AND ENGAGING
OUR COMMUNITY TO PUT THE BEST
RESEARCH FORWARD. HERE IS
EXAMPLES OF COMMUNITY ENGAGED
RESEARCH. THE FIRST IS CALLED
COMMUNITY BASED PARTICIPATORY
RESEARCH OR CBPR AND THIS IS
WHERE PEOPLE WITH FASD OR OTHER
COMMUNITY MEMBERS ARE ACTIVELY
INVOLVED IN THE RESEARCH PROJECT
ALL MAJOR STAGES. WE ALSO COULD
USE COMMUNITY ADVISORY BOARDS.
CABS. THESE ARE PEOPLE WITH FASD
AND OTHER IMMUNITY MEMBERS SERVE
ON ADVISORY BOARDS AND PROVIDE
INPUT ON A PROJECT. IN BOTH OF
THESE TYPES PEOPLE WITH FASD OR
COMMUNITY MEMBERS ARE ACTIVE
PARTICIPANTS. ONE OF MY CANADIAN
COLLEAGUES JACKIE PIE EQUATES
HAVING PEOPLE ON OUR TEAM WHO
HAVE LIVED OR LIVING EXPERIENCE
SIMILAR TO HAVING A STATISTICIAN
THAT WE ARE REALLY PART OF
RESEARCH THAT EVERYBODY HAS
THEIR OWN ROLE ON OUR RESEARCH
TEAMS AN PEOPLE WITH LIVED OR
LIVING EXPERIENCE OFFER REALLY
IMPORTANT INPUT JUST LIKE ANYONE
ELSE ON THE TEAM. SO I REALLY
ENCOURAGE PEOPLE TO THINK ABOUT
SOME OF THESE KIND OF APPROACHES
WHEN DESIGNING THEIR RESEARCH.
WE CAN ALSO DO DATA COLLECTION
WITH COMMUNITY MEMBER FEEDBACK.
THIS WOULD BE ASKING PEOPLE WITH
FASD OR OTHER COMMUNITY MEMBERS
TO COMPLETE INTERVIEWS OR FOCUS
GROUPS OR SURVEYS TO GATHER
INFORMATION TO INFORM OUR
RESEARCH QUESTION, DESIGN OF OUR
PROGRAM AND OTHER TYPES OF
THINGS. WE CAN ALSO DO OUTREACH
AND RELATIONSHIP BUILDING WITHIN
THE COMMUNITY. THIS HELPS US AS
RESEARCHERS ASK BETTER
QUESTIONS, GENERATE HYPOTHESES
AND UNDERSTAND OUR DATA AND HOW
WE CAN USE THAT TO INCREASE
EDUCATION AWARENESS. WE ALSO
NEED TO BE DIRECTLY TALKING WITH
PEOPLE WITH FASD AND OTHER
COMMUNITY MEMBERS TO LEARN WHAT
RESEARCH QUESTIONS ARE MOST
IMPORTANT TO THEIR LIVES. AND
ALSO HOW PROGRAMS CAN BE
DEVELOPED TO BEST FIT THEIR
LIVES OR CLINICAL PRACTICE. WE
CAN COMMUNICATE FINDINGS
EFFECTIVELY TO THE PUBLIC.
RESEARCHERS LEARN STRATEGIES TO
HELP THE PUBLIC UNDERSTAND WHAT
THEIR RESEARCH FINDINGS AND WHY
THEY MATTER. AND PEOPLE WITH
FASD REALLY WANT ACCESSIBLE
EXPLANATIONS OF WHAT WE HAVE
LEARN AND WHAT IT MEANS FOR
THEIR LIVES SO THESE ARE ALL
VALUABLE TYPES OF HOW WE CAN
ENGAGE OUR COMMUNITY TO DO THE
MOST EFFECTIVE RESEARCH. SO NOW
I'M GOING TO MOVE INTO WHAT
WORKS BASED ON COMMUNITY ENGAGED
RESEARCH THAT HAS BEEN DONE SO
FAR IN FASD. A LOT OF THE
QUALITATIVE LITERATURE FOCUSES
ON PROBLEMS AND BARRIERS BUT WE
HAVE ALSO LEARNED SOME THINGS
ABOUT WHAT HELPS PEOPLE AND WHAT
WORKS THESE ARE NOT ALWAYS EASE
WILL AVAILABLE TO ALL FAMILIES
BUT KNOWING WHAT THEY ARE IS A
GREAT STARTING PLACE TO BUILD
PROGRAMMING AND SYSTEMATIC
STRATEGIES TO MORE BROADLY
INCREASE ACCESS. SO I STARTED
WITH LOOKING AT WHAT IS
PUBLISHED SO FAR IN RESEARCH AND
FROM THE PERSPECTIVE OF PEOPLE
WITH FASD, INCLUDING CHILDREN
AND ADULTS. SO HERE ARE SOME
THINGS THAT HAVE COME UP IN
QUALITATIVE RESEARCH STUDIES.
THESE INCLUDE SUPPORT FROM
PARENTS AND FAMILY MEMBERS.
PROVIDERS WHO UNDERSTAND AND
HELP ADVOCATE FOR SUPPORTS AND
SERVICES. PEER MENTORSHIP HAS
BEEN HIGHLIGHTED AS VALUABLE.
HAVING PROACTIVE SUPPORTS RATHER
THAN PEOPLE HAVING TO WAIT OR
FAIL TO GET THE THINGS THEY NEED
THAT THEY KNOW WILL BE HELPFUL.
A REALLY IMPORTANT ONE IS
FEELING CONNECTED WITH PEERS AND
THE BROADER COMMUNITY AND HAVING
MEANINGFUL ACTIVITIES AND
FINDING THE RIGHT FIT. BEING
AWARE OF ONE OWN STRENGTHS AND
NEEDS IS ALSO REALLY HELPFUL FOR
PEOPLE WITH FASD. BALANCING
INDEPENDENCE AND ACCEPTING
SUPPORT IS ANOTHER THING THAT
HELPS. PUTTING CHALLENGES AND
PERSPECTIVE, BEING ABLE TO
RECOGNIZE WHAT YOU NEED, AND
ALSO HAVING HOPE FOR THE FUTURE
AND LEARNING AND HAVING COPING
SKILLS THAT ARE AFFECTIVE IS
ANOTHER ELEMENT THAT WORKS FOR
PEOPLE. THEN LIKE WHAT THE
FAMILIES SHARED IN RESEARCH
BASED ON THEIR LIVED EXPERIENCE.
ONE OF THE MOST IMPORTANT THINGS
IS BEING ABLE TO GET AN FASD
DIAGNOSIS BECAUSE FAMILIES
REALLY SHARE THAT IT HELPS THEM
TAYLOR THE SERVICES AND SUPPORTS
THEY GET FOR THEIR CHILDREN.
SIMILAR TO WHAT CHILDREN AND
ADULTS SAY, HAVING PROFESSIONALS
WHO GET IT, WHO UNDERSTAND AND
WHO CAN HELP IS REALLY
IMPORTANT. ALSO HAVING PROACTIVE
AND COORDINATED SERVICES IS
IMPORTANT. MANY FAMILIES ARE
TRYING TO JUST FEEL LIKE THEY
ARE DOING TRIAL AND ERROR AND
WORKING WITHIN SO MANY SYSTEMS
OF CARE THAT IT FEELS REALLY
DISORGANIZED SO HAVING SOMETHING
THAT IS COORDINATED IS REALLY
HELPFUL. ANOTHER BIG ONE IS
RESPITE CARE. PARENTS BEING ABLE
TO HAVE TIME TO REFRESH GET
SUPPORT AND HAVE BREAK TO BE
ABLE TO CONTINUE TO PROVIDE A
HIGH LEVEL OF CARE FOR LOVED
ONES. FAMILY MEMBERS WORKING
TOGETHER ALSO HELPS. HAVING
SUPPORT FROM OTHER FAMILIES WITH
LIVED EXPERIENCE WHO GET IT IT.S
REALLY USEFUL. HAVING FASD
CONFERENCES TRAININGS AND
SUPPORT GROUPS ARE ALSO REALLY
IMPORTANT. ANOTHER FEW STUDIES
HIGHLIGHT THE BENEFITS OF A
CONCEPT OF REFRAMING IT, MAYBE
FAMILIAR TO MANY OF YOU BUT I
WILL GO OVER IT HERE. THIS IDEA
OF REFRAMING ORIGINALLY CAME
FROM FAMILIES AND CLINICAL
WISDOM BUT IS ALSO NOW
INCORPORATED IN EVIDENCE BASED
INTERVENTIONS SUCH AS THE
FAMILIES MOVING FORWARD PROGRAM.
IN MY GROUP WE DID A STUDY A FEW
YEARS AGO WHERE WE INTERVIEWED
FAMILIST AND PROVIDED RESEARCH
SUPPORT FOR THESE IDEAS. SO HERE
IS HOW REFRAMING WORKS. IN
SOCIETY OUR USUAL INTERPRETATION
IS A BEHAVIOR IS THAT WILLFUL OR
PURPOSEFUL AND THIS IMPACTS THE
PARENTING STRATEGIES WE USE AND
HOW WE FEEL. SO TYPICALLY
WILLFUL ATTRIBUTIONS OR IDEAS
ABOUT BEHAVIOR LEAD TO
CONSEQUENCE STRATEGIES SUCH AS
PUNISHMENTS, TAKING THINGS AWAY,
STICKER CHARTS, THINGS THAT
HAPPEN AFTER BEHAVIOR. THIS
USUALLY DOESN'T WORK WELL AND
RESULTS IN FAMILIES FEELING
INEFFECTIVE AND FRUSTRATED AND
NOT HAVING A LOT OF SUCCESS
REFRAMING SEEING THINGS
DIFFERENTLY. UNDERSTANDING
BEHAVIOR IN LIGHT OF THE
NEURODEVELOPMENTAL OR BRAIN
BASED DISABILITIES
NON-COMPLIANCE OR NOT COMPLETING
A TWO STEP INSTRUCTION MAYBE DUE
TO PROBLEMS WITH ATTENTION
WORKING MEMORY VERSUS A CHILD
WHO DOESN'T OBEY. SO FROM THIS
REFRAMED INTERPRETATION, ADULTS
CAN USE PROACTIVE AND PREVENTIVE
STRATEGIES. WE OFTEN CALL THOSE
ACCOMMODATIONS SO HEAD OFF
FURTHER PROBLEMS. THIS LEADS TO
INCREASE SUCCESS AND LESS
FRUSTRATION FOR EVERYONE
INVOLVED. SO CONSEQUENCE
STRATEGIES TEND NOT TO WORK WELL
FOR PEOPLE WITH FASD BECAUSE
THEY REQUIRE A NUMBER OF
EXECUTIVE FUNCTIONING SKILLS
SUCH AS BEING ABLE TO GENERALIZE
TO NEW SITUATIONS INHIBIT
BEHAVIORS AND SOLVING PROBLEMS
FOR FUTURE BEHAVIORS. THESE CAN
BE CHALLENGING FOR MANY PEOPLE
WITH FASD SO DOING THOSE
PROACTIVE ACCOMMODATIONS CAN BE
MUCH MORE EFFECTIVE. HERE ARE
MORE PARENTING STRATEGIES
FAMILIES SAY WORK. MONITORING.
USING PROMPTS AND REMINDERS.
STRUCTURE AND ROUTINE IS VERY
HELPFUL. SOME PARENTS ALSO
DESCRIBE KIND OF AN OUTSIDE THE
BOX PARENTING STRATEGIES, BEING
CREATIVE AND FINDING WHAT WORKS
AND ALSO REALLY IMPORTANTLY,
IDENTIFYING AND SUPPORTING
STRENGTHS AND INTERESTS OF
PEOPLE WITH FASD THEMSELVES. I
ALSO WANT TO BRIEFLY ILLUSTRATE
HOW COMMUNITY ENGAGED RESEARCH
STRATEGIES CAN BE USED
SYSTEMATICALLY TO DEVELOP AND
TEST NEW PROGRAMS. THIS
INCREASES THE LIKELIHOOD THAT A
DEVELOPED PROGRAM IS GOING TO
MEET THE NEEDS OF PEOPLE WHO
WILL USE IT AND THAT IT WILL BE
EFFECTIVE. SO FOR EXAMPLE WE USE
COMMUNITY ENGAGE RESEARCH
PRINCIPLES TO CREATE A
SELF-DIRECTED APP FOR CAREGIVERS
BASED ON FAMILIES MOVING FORWARD
PROGRAM. WE USE A SYSTEMATIC
PROCESS WE GOT FEEDBACK FROM
CAREGIVERS AND PROVIDERS AT EACH
STEP ALONG THE WAY. SO FOR
EXAMPLE, AT START OF THE STUDY
WE CONDUCTED FOCUS GROUPS WITH
FAMILIES AND FIVE U.S. STUDIES
ON INITIAL DESIGN AND COMPONENTS
BEFORE WE EVEN BUILT THE APP. WE
WANTED TO MAKE SURE IT WAS ALL
IN THE RIGHT TRACK BEFORE WE GOT
TOO FAR DOWN THE ROAD. WE DID A
COUPLE OF ROUNDS OF BETA
TESTING, FOLLOWED BY A LARGER
SCALE FEASIBILITY TES TEST. WE
INTERVIEWED PARTICIPANTS AFTER
USING THE APP FOR A WHILE TO
BETTER UNDERSTAND THEIR
EXPERIENCES OF WHAT WORKED. WHAT
DIDN'T WORK SO WELL, AND IDEAS
TO MAKE IT BETTER. AND LAST YEAR
WE COMPLETED WHAT IS CALLED A
RANDOMIZED CONTROL TRIAL TO TEST
IF THE APP PRODUCED CHANGE FOR
FAMILIES. THIS IS KIND OF THE
LAST FINAL STEP AND WE WERE
REALLY EXCITED TO SEE IT WAS
EFFECTIVE IMPROVING THOSE
REFRAMING SKILLS AND PARENTING
SATISFACTION. SO WE ARE EXCITED
AND WORKING ON GETTING THAT
PAPER OUT SOON. MY FAVORITE
PROJECT SO FAR HAS BEEN MY
HEALTH COACH, WHICH IS A STUDY
IN WHICH WE HAVE BEEN DEVELOPING
AN APP FOR ADULTS WITH FASD. SO
OVER THE LAST TWO YEARS WE HAVE
BEEN PARTNERING WITH MEMBERS OF
THE ADULT LEADERSHIP COMMITTEE
AT THE FASD CHANGE MAKERS TO
CO-DESIGN AND TEST THE APP. SO
THIS IS KIND OF A BLEND BETWEEN
COMMUNITY ADVISORY BOARDS OR
COMMUNITY BASED PARTICIPATORY
RESEARCH. THE MEMBERS OF THE ALC
HAVE BEEN ACTIVE ON ALL PARTS OF
THE STUDY INCLUDING DATA
COLLECTION, RECRUITMENT,
DESIGNING THE APP AND SO ON. SO
THEY REALLY ENSURE WE ASK THE
RIGHT QUESTIONS, AVOID STIGMA
AND TAKE A STRIDES BASED
APPROACH TO THE TOOLS WE WERE
DEVELOPING AND ALSO SOME OF
THOSE FUN MEETS I GET TO HAVE.
JUST WANT TO HIGHLIGHT FOCUS
GROUP AND VARY RESULTS THAT THE
ALC HELPED US COLLECT AND
ANALYZE AND SO WHAT WE FOUND IS
THAT PARTICIPANTS WHO DID THE
FOCUS GROUPS OR VARIES FOUND THE
APP TO BE OVERALL POSITIVE AND
IN LINE WITH SOME OF THE NEEDS
THEY HAVE. THEY ALSO FOUND THE
APP FEATURES WERE ACCEPTABLE TO
PARTICIPANTS, THE APP LOOKED
RELATIVELY EASY TO USE AND WAS
SEEN AS A TOOL THAT CAN HELP
THEM WITH MANAGING THEIR
SYMPTOMS AND ADVOCACY AND
PARTICIPANTS OFFERED A WHOLE
RANGE OF RECOMMENDATIONS TO HELP
WITH ACCESSIBILITY AND
ACCOUNTABILITY AND NEW FEATURES
AND DESIGNS SO WE ARE EXCITED. I
THINK THE APP IS ACTUALLY BEING
RELEASED TO OUR FIRST GROUP OF
PARTICIPANTS AS I SPEAK. SO
EXCITED TO SEE HOW THEY
APPRECIATE THAT. OUR -- THE ALC
MEMBERS AS WELL AS RESEARCH
COORDINATOR ON THIS PROJECT ALSO
INITIATED A STUDY TO IDENTIFY
WHAT HELPS ADULTS WITH FASD FEEL
INCLUDED IN COMMUNITY ADVISORY
BOARDS. THESE NINE ITEMS THAT I
HAVE LISTED HERE ARE PART OF
BARBARA ISRAEL'S FRAMEWORK ON
COMMUNITY ENGAGED RESEARCH, BEST
PRACTICES. THROUGH TWO ROUNDS OF
INTERVIEWS AND SURVEY WITH ALC
WE LEARNED ALC MEMBERS
EXPERIENCED NEARLY ALL OF THESE
EXPERIENCES AND THEY HAVE HELPED
THEM REALLY FEEL A FULL MEMBER
OF THE TEAM AND BEEN ABLE TO
SHARE THEIR VIEWS. I KNOW WE
HAVE A COUPLE OF ALC MEMBERS ON
THE PANEL TODAY SO I'M SURE THEY
WOULD BE HAPPY TO ANSWER A BIT
MORE ABOUT THAT. BEFORE WE WRAP
UP THIS PORTION, BEFORE WE GET
TO THE PANEL
>> I JUST WANTED TO OFFER A FEW
NEXT STEPS AN DIRECTIONS. SO
ONE IMPORTANT STEP THAT I SEE IS
SHIFTING OUR VIEW FROM ONE OF
SURVIVING TO ONE FOCUSING MORE
ON THRIVING FOR PEOPLE WITH
FASD. THE BIG POINT HERE IS
REALLY SHIFTING FROM A PURELY
DEFICIT FOCUSED VIEW TO
STRENGTHS BASED. WE KNOW THIS
SORT OF DEFICIT VIEW REALLY
FOCUSES MORE ON WHAT PROBLEMS
ARE AND ITS PRESCRIPTIVE,
WHEREAS IF WE MOVE TO MORE A
THRIVING VIEWPOINT, WE REALLY
THINK ABOUT AN INDIVIDUAL
QUALITY OF LIFE AND WHAT IS MOST
IMPORTANT TO THEM REALLY
FOCUSING ON THEIR STRENGTHS AND
HOW WE CAN LEVERAGE THOSE TO
HELP THEM HAVE A LIFE WORTH
LIVING. TO DO THIS THOUGH IT IS
GOING TO BE IMPORTANT WE ATTEND
TO SOME OF THE BARRIERS THAT WE
FACE IN THE FIELD INCLUDING
LIMITED AWARENESS AND
UNDERSTANDING, ACCESS TO CARE,
AND STIGMA. BUT I THINK SOME OF
THE THINGS WE HAVE HIGHLIGHTED
TODAY REALLY OFFER SOME GREAT
DIRECTIONS FOR MOVING FORWARD
AND HOW TO DEVELOP PROGRAMS. AS
WE DO THIS THE FINAL THING I
OFFER IS REALLY USING WHAT SOME
OF THE FRAMEWORKS AND APPROACHES
THAT WE HAVE LEARNED FROM A
FIELD CALLED DISSEMINATION
IMPLEMENTATION SCIENCE. I THINK
COULD OFFER A LOT TO REALLY HELP
US IN OUR FIELDS OVERCOME SOME
OF THESE BARRIERS. IT CAN HELP
US LEVERAGE WHAT WE HAVE FOUND
WORKS AND THINKING ABOUT WAYS TO
OVERCOME BARRIERS AND INCREASE
THOSE FACILITATORS TO GET THESE
TYPES OF PROGRAMS OUT INTO THE
COMMUNITY. A BIG PART OF D AND
I DISSEMINATION IMPLEMENTATION
RESEARCH INVOLVES COMMUNITY BACK
PRACTICES SUCH AS ENGAGING
CLIENTS, ADMINISTRATORS, PEOPLE
WITH FASD TO FIGURE HOW WE GET
THAT INTO PRACTICE. SO BEFORE
WE MOVE TO THE PANEL I VISIT OUR
WORD CLOUD ONE MORE TIME SO WE
CAN SEE THE FINAL CONCLUSION OF
OUR -- WHO ALL IS PART OF OUR
COMMUNITY AS WE THINK ABOUT THAT
MOVING INTO OUR DISCUSSION.
THANK YOU, EVERYBODY. I WILL
HAND IT OVER TO JAN.
>> GOOD AFTERNOON. I'M JUST
GOING TO DELAY ANY QUESTIONS FOR
CHRISTIE TO AFTER THE PANEL
SPEAKS I JUST WANT TO SAY IT IS
WHAT I THINK YOU ARE GOING TO
HEAR WILL BE INFORMATIVE AND
INSTRUCTIVE AND I'M REALLY
PLEASED TO BE ABLE TO INTRODUCE
THEM. NOT GOING TO INTRODUCE
EACH TO YOU BECAUSE THEIR BIOs
ARE ONLINE AND I HOPE YOU HAVE
OR WILL READ THEM. THE ORDER OF
SPEAKERS IS KATHY HOTELLING.
FOLLOWED BY NICK DAVIS
MAGLIOZZI, THEN JUSTIN SHEPHERD,
KATHY MITCHELL WHO IS ANOTHER
PARENT. I ASKED EACH OF THEM TO
LIMIT WHAT THEY WANT TO SAY TO
FIVE MINUTES SO THAT WE CAN HAVE
LOTS OF TIMES FOR QUESTIONS TO
THE PANEL BY THOSE ONLINE AS
WELL AS MYSELF AND HAVE SOME
REAL DISCUSSION. KATHY, WHEREVER
YOU ARE, CAN I ASK YOU TO BEGIN
I SEE JAN, I DON'T SEE ME.
>> I'M LOOKING AT THIS A LITTLE
BIT LIKE WHAT IS HAPPENING HERE
>> WE CAN HEAR YOU AND I CAN SEE
YOU.
>> GOOD. THANK YOU. THANK YOU
FOR HAVING ME TODAY. I AM THE
PARENT OF 29-YEAR-OLD DAUGHTER
AND I HAVE BEEN ASKED TO SPEAK
ABOUT WHAT IS WORKING. IT IS
WITH SOMEWHAT CHAGRIN, NOT SURE
WHAT TO CALL IT THAT I HAVE TO
SAY THAT FIRST WHAT WORKED FOR
MY DAUGHTER IS THAT SHE COMES
FROM A WHITE HIGHLY EDUCATED AND
PRIVILEGED FAMILY. I HAVE BEEN
HOME WITH -- I HAVE BEEN A
SINGLE PARENT FOR 17 YEARS. I
WAS ABLE TO RETIRE FROM THE
STATE OF ILLINOIS 16 YEARS AGO
TO STAY HOME WITH HER AND TO
NAVIGATE HER LIFE FROM AGE 13
UNTIL NOW. I CAN'T UNDERSCORE
HOW IMPORTANT THAT IS ALTHOUGH
HOW AT SOME LEVEL IT'S -- IT
PAINS ME AND IS EMBARRASSING FOR
ME TO SAY THAT. I THINK THAT
ZERO TO THREE SERVICES
DEFINITELY BENEFITED SASHA. SHE
WAS THREE FULL MONTHS PREMATURE
SO SHE AUTOMATICALLY GOT THAT
ONCE HER PHYSICIAN PUT THAT INTO
PLACE. SHE HAD IN ADDITION TO
THAT, SHE HAD OTPT SPEECH
LANGUAGE, THROUGH HER IEP, SHE
HAD ADAPTIVE PE BECAUSE OF HER
COORDINATION PROBLEMS. I WAS
ABLE TO GIVE HER WEEKLY HORSE
BACK RIDING WHICH IMPROVED HER
VISUAL HAND TO EYE COORDINA COO.
SHE HAD AN IEP AND WENT TO AN
EXCELLENT CAMPUS CHILD CARE
WHERE I WORKED. THEY HELPED ME
PREPARE FOR HER IEP AND HER IEP
WAS BASED ON HER DIAGNOSIS OF
ADHD AT THAT TIME WHEN SHE
ENTERED INTO THE PUBLIC SCHOOL
SYSTEM. I KEPT SAYING I DON'T
THINK THIS IS REALLY ADHD IN THE
FRA DIVISIONAL SENSE. --
TRADITIONAL SENSE. HER DIAGNOSIS
DIDN'T COME UNTIL SHE WAS TEN
AND A HALF. ONLY BECAUSE I
PURSUED THAT. I ALSO
INSTINCTIVELY KNEW WHAT
ACCOMMODATIONS SHE NEEDED IN HER
IEP THOUGH I'M TRAIN AS A
PSYCHOLOGIST, I'M A CLINICAL
PSYCHOLOGIST, I REALLY
TRUTHFULLY KNEW NOTHING ABOUT
DEVELOPMENTAL DISABILITIES AN
CERTAINLY NOT ABOUT FASD, IT WAS
NEVER MENTIONED IN MY TRAINING
UNTIL MY DAUGHTER WAS DIAGNOSED
MY FIRST STEP WAS TRAINING BY
DIANE MELVIN IN THE NEURAL
BEHAVIORAL APPROACH, THAT HAS
CHANGED OUR LIVES 180 DEGREES
AROUND I TEACH THAT TO PEOPLE
WHO HAVE CONTACT WITH HER WITH
THE SCHOOLINGS, ET CETERA, IT
HAS MADE A WORLD OF DIFFERENCE
AND WITHIN TWO WEEKS OF ME
HAVING THAT TRAINING SHE
IRONICALLY SAID TO HER
PSYCHIATRIST, MY MOTHER IS A LOT
MORE RELAXED THAN SHE USED TO
BE. THAT IS AN INTERESTING WORD.
I FELT LIKE I FINALLY KNEW WHAT
I WAS DOING BECAUSE THE
APPROACHES I HAD BEEN USING BOTH
THAT I KNEW AS A THERAPIST AND
AS A TEACHER EDUCATOR AND AS A
PARENT WERE TOTALLY
INAPPROPRIATE AND GOING NOWHERE
GETTINGS RESPITE WAS VITAL.
BEING A PARENT 24/7 AND I FEEL
LIKE I AM STILL A PARENT 24/7 AT
29 YEARS IS EXHAUSTING,
ISOLATING AND WE ARGUE ABOUT
WHOSE RESPITE IS IT, HERS OR
MINE AND I GUESS IT IS BOTH OF O
OURS. I WAS FINALLY ABLE TO GET
RESPITE WHEN SHE WAS PLACED ON
THE INNOVATIONS WAIVER. I HAD
LIVED IN TWO DIFFERENT STATES
DURING HER LIFETIME. I WAS NEVER
TOLD ABOUT THE INNOVATIONS
WAIVER WHICH EXIST IN EVERY
STATE. I WAS NOT TOLD BY ANYONE,
TEACHER PARENT PHYSICIAN ALLIED
HEALTH, ET CETERA. BUT I FOUND
MYSELF AT A MEETING AND I SAID
TO SOMEONE SITTING NEXT TO ME,
WHAT IS THIS ABOUT? SHE SAID OH
MY GOSH, ISN'T YOUR DAUGHTER ON
THIS WAIT LIST? SO ONCE WE GOT
ON THE WAIT LIST SHE WAS ABLE TO
GET RESPITE WEEKLY OR WE WERE.
WHAT ELSE HAS WORKED, I HAVE
SERVED AS HER EXTERNAL BRAIN.
NON-STOP, HELPING HER MAKE
DECISION, POINTING HER IN THE
RIGHT DIRECTION, HELPING HER
THINK ABOUT THINGS IN A
DIFFERENT WAY. I CANNOT
UNDERESTIMATE THE HELP THAT
GOING TO THE VAN COOPER
CONFERENCE HAS MADE OUR LIVES
WORK. I WAS ABLE TO TAKE SASHA
SEVERAL TIMES AND SHE CONNECTED
WITH PEOPLE. I CONNECTED WITH
OTHER PARENTS AND I LEARNED AND
HAVE BEEN STUDYING FASD FOR OVER
16 YEARS. WE FOUND HER FIRST
PSYCHIATRIST AFTER SIX
PSYCHIATRISTS THAT ACTUALLY KNEW
ABOUT FASD AND SHE SAW THAT
WOMAN FROM 16 TO 24 THAT MADE A
WORLD OF DIFFERENCE IN TERMS OF
MEDICATION SHE WAS GIVEN.
CURRENTLY SHE HAS A PSYCHIATRIST
WHO IS OPEN TO LEARNING ABOUT
FASD UTILIZES THE MATTHEWS
PROTOCOL AND THE FASD ALGORITHM
WHICH IS OUT OF CANADA AND THAT
HAS BEEN EXTREMELY USEFUL. SHE
IS -- SHE ALSO HAS HIGH ANXIETY
BIPOLAR DISORDER, AND
CHARACTERISTICS BUT NOT FULL
BLOWN DIAGNOSES OF -- FULL BLOWN
OTHER DIAGNOSE DIAGNOSES. THROUR
SEALS WE HAVE BEEN ABLE TO
ACCESS COACHING THE REPEAT LINE
AND COACHING WHERE SHE HAS BEEN
ABLE TO GO TO A RESOURCE SENOR.
THAT HAS BEEN -- THAT DEFINITELY
IS WORKING. THE CHARACTERISTICS
HER PERSONALITY CHARACTERISTIC
AND MY OWN OF PERSEVERANCE, OF
BUILDING ON HER STRENGTHS AND
UTILIZING THEM IN THE PROCESS OF
HER LEARNING MATERIALS THAT SHE
MIGHT NOT USE AS READILY AS SHE
WOULD OTHERWISE ARE REALLY
IMPORTANT TO THE SUCCESS SHE HAS
HAD THUS FAR. I HAVE TO SAY THAT
NONE OF WHAT SHE HAS RECEIVED
WITH THE EXCEPTION OF THAT
PSYCHIATRIST FOR EIGHT YEARS AND
THE CURRENT MENTORING THAT SHE
RECEIVES FROM CJ LUTKE ARE FASD
INFORMED. THESE ARE GENERAL
SERVICES FOR THOSE IN THE
DEVELOPMENTAL DISABILITY WORLD
MANY DO NOT KNOW ABOUT THESE
SERVICES BUT BECAUSE I HAVE BEEN
ABLE TO BE HOME AND LEARN AND
STUDY AND THAT IS MY INCLINATION
ANYWAY AS A HIGHER EDUCATION
FACULTY MEMBER, I HAVE DONE
THAT. AND BUT IT IS NOT BECAUSE
ANYTHING SHE HAS PARTICIPATED IN
IS FASD INFORMED WITH THE
EXCEPTION OF WHAT I TEACH PEOPLE
ABOUT FASD. AND YOU CAN ONLY
TEACH SO MUCH WHEN PEOPLE DON'T
HAVE MUCH CONTACT WITH YOUR
DAUGHTER A FEW HOURS A WEEK.
>> I'M GOING TO ASK YOU TO STOP
THERE AND MOVE ON TO NICK.
>> I WAS READY TO STOP. THANK
YOU. CAN I SAY I WANT TO KNOW
WHAT IS GOING TO HAPPEN WHEN I
DIE. THAT'S A BURNING QUESTION.
>> THANK YOU.
>> NICK.
>> HELLO MY MAKE IS NICHOLAS I'M
19 YEARS OLD AND JUST LAST JUNE
I GRADUATED FROM HIGH SCHOOL. I
WAS DIAGNOSED WITH FASD IN EARLY
AGE, MY MOTHER HAD PASSED WHEN I
WAS ABOUT 4 YEARS OLD SO I WAS
LEFT TO BE WITH MY GRANDMOTHER.
AND AT THE TIME NOT MUCH WAS
KNOWN. SO WHEN I WAS DIAGNOSED
SHE DIDN'T REALLY KNOW WHAT FAS
WAS. SO SHE HAD GONE TO A DOCTOR
THAT ENDED UP DIAGNOSING ME WITH
IT AND THE DOCTOR TOLD HER THAT
YOU NEED TO LEARN AS MUCH ABOUT
THIS AS POSSIBLE. SO SHE DID
THAT AND SHE GOT INVOLVED IN
DIFFERENT GROUPS SUCH AS NO FAST
WHICH IS NATIONAL ORGANIZATION
ON FASD WHICH WE PARTICIPATED IN
DIFFERENT SPEAKING EVENTS ON
MULTIPLE OCCASIONS. SHE ALSO
ATTENDED DIFFERENT CONFERENCES
ABOUT IT AS WELL. SHE STARTED TO
HELP TEACH MY TEACHERS ABOUT THE
DISABILITY AND HOW THEY CAN COPE
WITH IT TO TRY AND HELP ME
SUCCEED IN THE LONG RUN. WHICH
SOME THINGS WORK, SOME DIDN'T,
IT IS ABOUT ADAPTING TO THE
SITUATION. BUT HOPEFULLY TODAY
WILL BE ABLE TO LIKE ADDRESS
SOME OF THE ISSUES THAT ARE
NEEDED BY KIDS AND ADULTS WITH
FAS THAT ARE NOT AVAILABLE TO
THEM AND HOW WE CAN HELP THEM
BECAUSE THERE IS A LOT OF STUFF
THAT WE NEED THAT A LOT OF
PEOPLE JUST DON'T UNDERSTAND. A
LOT IS LIKE KATE SAID, KIND OF
NEED THAT EXTERNAL BRAIN TO HELP
MOST OF THE TIME. YEAH, THAT'S
PRETTY MUCH IT.
>> OKAY. REBECCA.
>> HI, EVERYBODY. MY NAME IS
REBECCA TILLOU, I AM 43 YEARS
OLD. I WAS DIAGNOSED WITH FETAL
ALCOHOL SYNDROME AT 34 YEARS
OLD. IN ALBANY NEW YORK BY A
PEDIATRIC GENETICIST AT 34. AND
I THINGS THAT WORK FOR ME
ROUTINE, STRUCTURE, REPETITION.
I DO WORK FULL TIME, I HAVE A 9
TO 5 JOB, I HAVE HAD THE SAME
JOB FOR 16 YEARS NOW. WHY THAT
JOB WORKS FOR ME IS BECAUSE IT
IS THE SAME STROKES EVERY SINGLE
DAY, IT IS THE SAME COMPUTER
SYSTEM, IT'S THE SAME TYPING, IT
IS -- SO IT'S THAT REPETITION.
SO I KIND OF FELL INTO THE JOB
AS AN INSURANCE ADJUSTER
FOR MEDICAL CLAIMS -- ADJUSTOR
AND IT WORKS VERY WELL. I
DIDN'T HAVE SUPPORTS WHEN I WAS
YOUNGER. NOBODY KNEW THAT I HAD
FETAL ALCOHOL SYNDROME, IT WAS
SUSPECTED BY THE PEDIATRICIAN
BUT NEVER REALLY LOOKED INTO.
BECAUSE IT WAS BACK IN 1980. AND
WE DIDN'T KNOW ANYTHING ABOUT MY
BIRTH MOM. SO I DID FACIAL
FEATURES I STILL DO TODAY SUBTLY
SO THERE ARE SUPPORTS THAT I DO
USE TODAY, I USE MY HUSBAND HE IS MY
EXTERNAL BRAIN AND WE WORK AS A
TEAM. SO HE GETS THEM READY IN
THE MORNING HE DOES THE LUNCHES
TAKES ONE TO -- ONCE I TAKE TO
THE OTHER AND HE IS ALWAYS THERE
TO KIND OF BREAK UP THE CHAOS
THAT CAN HAPPEN WHEN YOU HAVE A
FAMILY OR JUST LIFE IN GENERAL.
I AM LEARNED AS I GOT OLDER
TAKEN A LONG TIME, I LEARNED NOT
TO OVERBOOK MYSELF AND I LEARNED
MY TRIGGERS SO I TRY TO KEEP A
SIMPLE LIFE AND IT DOES WORK FOR
OUR FAMILY SO THAT DOES HELP
LOTS OF VISUALS, AND THE ONLY
FORMAL SUPPORT I HAD AS A KID
WAS SPEECH THERAPY BUT IT WASN'T
FOR FAS, IT WAS BECAUSE I
COULDN'T ARTICULATE SOUNDS.
LOOKING BACK I HAD LANGUAGE
ISSUES ON CAUSE AND EFFECT IS
HARD FOR ME STILL TO COMPREHEND
AND IF I HAD BEEN DIAGNOSED I
PROBABLY WOULD HAVE BEEN ONE OF
THE OBJECTIVES. SO THERE IS HOPE
FOR US, SUPPORTS ARE ALWAYS
NEEDED. I THINK WITH EVERYBODY.
BUT I THINK IF YOU HAVE A CORE
FAMILY, A GOOD SUPPORT THERE,
AND IF YOU DO FIND A JOB AND YOU
KNOW LIKE MINE AND MY SUPERVISOR
KNOWS ABOUT MY DISABILITY, AND
WORKS WITH ME AND HAS BEEN THERE
THE WHOLE WAY. SHE IS AND
ADVOCATE. SO IT IS -- YEAH, THAT
IS IT. YOU DO HAVE A LITTLE WAYS
TO GO BUT WE ARE GETTING THERE.
THAT'S ALL I HAVE.
>> HELLO. MY NAME IS KAT
GRIFFIN, I'M 34-YEAR-OLD OLD, I
WAS DIAGNOSED WITH FULL FAS AS
AN INFANT. LIKE MOST ADULTS WITH
FASD THAT I KNOW AND I KNOW
MANY, ESPECIALLY BECAUSE I'M A
MEMBER OF THE INTERNATIONAL
ADULT LEADERSHIP COLLABORATIVE
MANY KNOWN AS THE ALC OF FAS
CHANGE MAKERS, I HAVE THINGS I
STRUGGLE DAILY WITH. BUT I
ACTUALLY HAVE MORE THINGS THAT
I'M GOOD AT. AS A -- I LEARNED
MORE WHAT THOSE STRENGTHS ARE
AND HOW TO MAKE THEM WORK FOR ME
AND WHAT I NEED FOR SUPPORTS. I
DON'T NEED YOU TO TEACH ME OVER
AGAIN HOW TO DO SOMETHING BUT I
DO NEED PEOPLE TO RECOGNIZE THAT
IN THE MOMENT I MIGHT NEED YOU
TO DO IT FOR ME. THAT'S
DEFINITELY SUPPORTIVE FOR ME.
I'M ELIGIBLE FOR ALL SERVICES
WHERE I LIVE IN BRITISH COLUMBIA
CANADA. I WAS SUBSIDIZED RENT IN
A BUILDING OWNED BY AGENCY THAT
PROVIDES SUPPORTS TO ADULTS WITH
DISABILITIES. SO I'M REALLY
LUCKY. I HAVE A DECENT PLACE TO
LIVE. I ALSO HAVE A ONE TO ONE
SUPPORT WORKER THAT I GET TO SEE
ONE DAY A WEEK. AND THIS IS
IMPORTANT, SHE TRULY UNDERSTANDS
FASD. AND WHAT I NEED TO BE
SUCCESSFUL. SHE DOES WHAT I
NEED HER TO DO, NOT WHAT SOMEONE
ELSE TELLS HER TO DO. I HAVE
BEEN EMPLOYED FOR MORE THAN FIVE
YEARS AS FASD MENTOR AND A FASD
DIAGNOSTIC CLINIC IN BRITISH
COLUMBIA. MENTORS ARE SOMETHING
WE HAVE AND IT IS A JOB THAT I
LOVE. I THINK IT IS IMPORTANT
FOR YOU TO KNOW AND UNDERSTAND
WHAT A DIFFERENCE MENTORING CAN
MAKE TO PEOPLE WITH FASD. I HAVE
MENTORING FOR YEARS. THAT
HELPED ME BECOME THE PERSON THAT
I AM TODAY. TEENS AN ADULTS
WITH FASD OFTEN LEARN BEST FROM
OTHERS WHO SHARE THEIR
EXPERIENCE AND TRULY UNDERSTAND
WHAT IT IS LIKE TO LIVE WITH A
DISABILITY SO FEW PEOPLE
UNDERSTAND OR RESPECT. I AND ALL
ADULTS WITH FASD AND BC RECEIVE
DISABILITY INCOME FINANCIAL
SUPPORT FROM THE GOVERNMENT AND
IN BC IT IS CALLED PWD, PERSONS
WITH DISABILITY. IT IS BASED ON
MY FASD DIAGNOSIS, NOT MY IQ. SO
IF YOU HAVE FASD IN BC YOU ARE
ELIGIBLE FOR PWD. BASED ON
DIAGNOSIS ALONE. WHICH IS GREAT
PEOPLE WITH FASD IN BC ARE ALSO
ALLOWED TO EARN $15,000 A YEAR
IN EMPLOYMENT IF YOU ARE
RECEIVING DISABILITY INCOME.
DISABILITY INCOME IS NOT CLAWED
BACK FROM UPWD BECAUSE YOU WERE
ABLE TO WORK PART TIME. YOU ARE
ENCOURAGED TO BE EMPLOYED MEMBER
OF SOCIETY TO THE BEST OF YOUR
ABILITY. AS WELL IN BC IF A
PERSON WITH FASD IS SPECIFICALLY
EMPLOYED AS A MENTOR, FOR AN
AGENCY THEN THE MONEY THEY
EARNED AS A MENTOR IS WHAT IS
CALLED EXEMPT INCOME. SO IT DOES
NOT HAVE TO BE DECLARED. AND ANY
OTHER INCOME THEY MIGHT EARN
WORKING, SAY LIKE IN A
RESTAURANT OR A STORE. EVEN
THOUGH I AM ELIGIBLE AND DO
RECEIVE SERVICES LIMITED AS THEY
ARE, I FIND THE MOST IMPORTANT
SUPPORTS FOR ME ARE PEOPLE AND
OPPORTUNITIES BOTH THAT COME
FROM FASD EXPERTISE. AND FASD
SPECIALIST, A DOCTOR, A NURSE
PRACTITIONER WHO IS ALWAYS
AVAILABLE. A MENTAL HEALTH
THERAPIST WHO IS HIGHLY
KNOWLEDGEABLE AND FASD AND
TRAUMA. SOMEONE I CAN CALL AT
ANY TIME OF THE DAY FOR HELP AND
ADVICE OR DIRECTION AND IT IS
OBVIOUSLY SOMEONE WHO IS NOT
GOING TO JUDGE ME. HAVING AND
ADVOCATE WHO DOESN'T TAKE NO FOR
AN ANSWER. KNOWS HOW TO NAVIGATE
IN SYSTEMS BECAUSE TRYING TO DO
THIS ON MY OWN IS ABSOLUTELY
IMPOSSIBLE. MY JOB. I LOVE MY
JOB, BUT I NEED A REASON TO GET
UP IN THE MORNING. I THINK WE
ALL DO IN A SENSE. THIS ALLOWS
ME TO USE MY SKILL SET THAT
HONESTLY ONLY THOSE WITH FASD
HAVE. I HAVE A JOB BASED ON MY
DISABILITY AND THAT IS AMAZING.
PEOPLE WITH FASD, THERE IS A
COMMONALITY EXPERIENCE THAT YOU
SIMPLY CANNOT REPLACE WITH
SOMETHING ELSE. THOSE ARE FASD,
WE GET EACH OTHER. IN A WAY VERY
FEW OTHERS DO. IT IS VERY RARE
BUT IT IS ALSO AMAZING.
SOMETHING THAT I THINK THAT IS
REALLY IMPORTANT AND WORKS WELL
FOR TEENS AN ADULTS WITH FASD IS
TO BE INVOLVED WITH OTHERS WITH
FASD. I HAVE HAD A LOT OF
EXPERIENCE WITH THAT IN B.C.
BECAUSE FOR MANY YEARS, UNTIL
COVID, SHUT EVERYTHING DOWN, WE
HAD A THREE DAY CONFERENCE EVERY
YEAR FOR TEENS AND ADULTS WITH
FASD AND IT WAS RUN THROUGH THE
UNIVERSITY OF BC, IT WAS
DESIGNED DEVELOPED AND ORGANIZED
AND RUN B BY THE ALC. I WANT YOU
TO HEAR AND UNDERSTAND THAT FASD
IS NOT LIVED EXPERIENCE BECAUSE
IT IS NOT PAST TENSE. WE ARE
LIVING WITH IT EVERY DAY. WE
WANT SYSTEMS TO SEE INVESTING IN
US MAKES GOOD SENSE AND WOULD
NOT BE HARD TO DO AT ALL. IT IS
MY OPINION AND THAT OF EVERYONE
I KNOW WHO HAS FASD, THAT ANY
KIND OF INTERVENTION IS ACTUALLY
PREVENTION. FROM. IF I CAN GIVE
YOU ONE MESSAGE TO THE ENTIRE
COMMUNITY IT WOULD BE TO CHANGE
HOW YOU THINK ABOUT PREVENTION.
THANK YOU SO MUCH.
>> THANKS, KAT. BEFORE ASKING
JUSTIN TO SPEAK NICK DO YOU WANT
TO TURN OFF YOUR CAMERA WHO WE
CAN JUST FOCUS ON WHO SPEAKING?
THANKS. JUSTIN.
>> THANKS, JAN. ON BEHALF OF ALC
FASD CHANGE MAKERS, THANK YOU
ICCFASD FOR GIVING US THIS
PLATFORM TODAY AND GETTING MORE
EYES AND EARS ON THIS INCREDIBLY
IMPORTANT TOPIC SO I WAS 40
YEARS OLD WHEN I RECEIVED MY
DIAGNOSIS AND I HAVE A DIAGNOSIS
OF ARND. I DISCOVERED IT MAKE A
FILM CALLED THE FASD PROJECT. I
WAS TRAVELING THE COUNTRY WILL
BEING TO ALL THESE INCREDIBLE
STORIES MEETING THESE INCREDIBLE
PEOPLE BUT I STARTED HEARING A
LOT OF MYSELF AND I HAVE BEEN
AROUND THE FASD COMMUNITY A LONG
TIME, FROM FAMILY HAVING
DIAGNOSIS OF IT TO MY WIFE WHO
IS A RESEARCHER IN THE
COMMUNITY. SO I HAD NEVER -- IT
NEVER OCCURRED TO ME UNTIL I
STARTED HEARING THESE STORIES
AND COMMONALITIES AND PARALLELS
TO MY OWN LIFE. AND SO I DECIDED
TO REACH OUT AND GET A DIAGNOSIS
MYSELF. I FILMED IT AND IT --
HERE I AM TODAY A NEW MEMBER OF
THE ALC CHANGE MAKERS I'M
HONORED AND HUMBLED TO BE PART
OF. HAVING MADE A FILM ABOUT IT
AND LISTENING TO EVERYONE ACROSS
THE COUNTRY LIVING IN ALL WALKS
OF LIFE AND ALL DIFFERENT PLACES
IN AGE SOCIOECONOMIC STATUS WHAT
NOT. I THINK THE ONE THING THAT
STAND OUT TO ME IS THAT THIS IS
THE NEEDS ARE HIGHLY
INDIVIDUALIZED. THIS IS A
SPECTRAL DISORDER AND IT VARIES
GREATLY ACROSS THE SPECTRUM OF
WHAT PEOPLE NEED. I MYSELF VAN
ADULT DIAGNOSIS OF ADHD AS WELL.
AND HAVE HAD IT MY WHOLE LIFE,
AS A CHILD IT WAS VERY DIFFICULT
IN SCHOOL I DID OKAY. BUT I'M
AN 80s BABY SO THEY WEREN'T
REALLY DOING THAT DIAGNOSIS AS
MUCH BACK THEN. SO I DIDN'T HAVE
AN IEP OR ANYTHING LIKE THAT. SO
I HAD TO WORK EXTRA HARD JUST TO
BE AVERAGE AT SCHOOL. I THINK
THAT LEADS TO LIKE WHAT IS
WORKING FOR ME NOW THAT I'M --
I'M STILL PROCESSING MY
DIAGNOSIS, I'M 42 NOW, IT'S BEEN
A YEAR AND A HALF, A LITTLE
MORE, SINCE I RECEIVED IT. BUT I
DO KNOW THAT RECEIVING THIS
DIAGNOSIS I FIND HIGHLY VALUABLE
BEING ABLE TO BE PRIVILEGED
ENOUGH TO AFFORD TO GET A
DIAGNOSIS WHICH IS NOT
ACCESSIBLE AND BEING ABLE TO
HAVE THE WHEREWITHAL TO KNOW
THAT HEY, IS THIS A POSSIBILITY
FOR ME? A LOT OF PEOPLE DON'T
KNOW. 9 OUT OF 10 PEOPLE LIVING
WITH FASD DON'T HAVE FACIAL
DYSMORPHOLOGY, THEY HAVE A
COLLECTION OF MAYBE OTHER
SYMPTOMS DIAGNOSED BY CORE 2, I
HAVE ADHD, I HAVE PUBLICLY HAVE
ODD, IT IS NOT DIAGNOSED BUT
I'VE HAD TROUBLE WITH AUTHORITY
AND BEEN TO JAIL A FEW TIMES
WHICH WAS ANOTHER THING THAT I
THOUGHT WAS COMMON JUST AMONG
EVERYBODY BUT KIND OF LEARNED
THAT THAT'S UNIQUE EXPERIENCE
UNTO MYSELF. SO WHAT I HAVE
REALLY LEARNED IS THAT MY WIFE
IS MY EXTERNAL BRAIN IN A LOT OF
WAITES. I NEED MY FASD LOOKS A
LOT LIKE A LITANY OF DIFFERENT
HEALTH PROBLEMS SO I HAVE -- I
JUST RECEIVED OPEN HEART SURGERY
FOR AN OUT KAPPA IN DECEMBER AND
SO THAT IS A CONGENITAL HEART
DISEASE, THERE IS NO RESEARCH
BACKING UP THAT IT IS RELATED TO
ALCOHOL EXPOSURE. FOR A LONG
TIME I WALK INTO A DOCTOR'S
OFFICE AND WITHOUT MY DIAGNOSIS
I LOOK LIKE AN AVERAGE HEALTHY
PERSON THAT SO I GET DISMISSED A
LOT AND MY PROBLEMS AREN'T
HEARD. I HAVE DIVERTICULITIS
THAT AFFECTS MY DIET AND HAS
ENDED ME IN THE HOSPITAL AS
WELL. I HAVE A MULTITUDE OF
DIFFERENT MENTAL HEALTH ISSUES
SO I NEED DOCTORS TO LISTEN AND
BE AWARE. SO THE WAY THAT THINGS
THAT HELP ARE HAVING SUPPORT
SYSTEM LIKE MY WIFE WHO GOES IN
AND ADVOCATE FOR ME, THAT WHEN I
SAY HEY MY HEART IS HURTING OR
I'M HAVING PAIN IN MY LOWER LEFT
SIDE THAT I'M NOT JUST DISMISSED
AS A NORMAL HEALTHY LOOKING
PERSON AND BOOTED OUT THE
DOCTOR'S OFFICE. SO GETTING
PEOPLE TO UNDERSTAND DOCTORS,
MEMBER TALL HEALTH
PROFESSIONALS. GETTING AWARENESS
OUT THERE AMONG THOSE IN
EDUCATION, SO THAT THE COMMUNITY
ITSELF HAS TO -- DOESN'T HAVE TO
CONTINUOUSLY TIRELESSLY EDUCATE
EVERY DOCTOR THEY WALK INTO,
EVERY MENTAL HEALTH PROFESSIONAL
THEY WALK INTO. IT IS COMMUNITY
NEEDS THIS THE MOST. SO HAVING
THAT SCAFFOLDING SUPPORT SYSTEM
I WORK FOR MYSELF, KIND OF
BECAUSE I HAVE TO. I DON'T WORK
WELL UNDER OTHERS SO I WORK FOR
MYSELF, I'M A CONTRACTOR I'M A
FILM MAKER I WEAR MANY DIFFERENT
HATS. AND TO PIGGY BACK ON WHAT
KAT SAID IS YOU KNOW, A LOT OF
WAYS I HAVE MY BRAIN HAS ITS
DISABILITIES AND BUT I ALSO HAVE
WHAT I FEEL LIKE ARE SUPERPOWERS
AND ABILITY TO PERSEVERE AND
PUSH THROUGH AND SOLVE PROBLEMS,
I WON'T STOP UNTIL I SOLVE THIS
PARTICULAR PROBLEM, RIGHT? SO I
THINK THAT THAT -- THERE IS A
PLACE AND IS A WAY WITH ENOUGH
SUPPORT SYSTEMS IN PLACE, TO
HELP INDIVIDUALS LIVING WITH
FASD REALLY GO FROM THAT SURVIVE
MODE TO THAT THRIVE MODE. AS
CHRISTIE WAS SAYING IN HER
PRESENTATION. WE WANT TO MOVE
FROM JUST SURVIVING TO THRIVING.
AND IT IS -- AND MANAGE OUR OWN
SUCCESSES AND THINGS LIKE THAT
WITH HELP OF THOSE AROUND US.
REACH UP TO THAT NEXT LEVEL. SO
SOMETHING I WANTED TO ECHO AS
WELL THAT KAT MENTIONED THAT IS
HAPPENING IN CANADA THAT THE
U.S. REALLY COULD USE IS A, WE
NEED TO GET THE FASD RESPECT ACT
PUSHED THROUGH. B., WE NEED ALL
SORTS OF DIFFERENT KINDS OF
SUPPORT, OF COURSE WE HAVE THAT
OF OUR FAMILY AND FRIENDS AND
PEERS, BUT WE NEED GOVERNMENT,
STATE, AND LOCAL COMMUNITY
SUPPORT AS WEL WELL. I FEEL THAT
THAT HAPPENS THROUGH AWARENESS.
AND ALSO FINANCIAL SUPPORT WOULD
BE GREAT FOR INDIVIDUALS LIVING
WITH THIS, YOU WOULD ADDRESS A
LOT OF PROBLEMS BY WITH MEDICAL
DEBT RELIEF, MENTAL HEALTH
ACCESS TO MENTAL HEALTH AND
DOCTORS AND SUCH. SO THAT
UNDERSTAND THIS DISABILITY SO
THEY CAN KNOW IT IS CO-MORBID
WITH OVER 400 DIFFERENT OTHER
DIAGNOSES, WHICH IS AN IMPORTANT
THING TO UNDERSTAND PHYSICALLY
AND MENTALLY FOR THIS COMMUNITY.
SO WE NEED I THINK I'M GOING TO
END ON THIS, WE NEED ACTION. I
THINK EVERYBODY ON THIS PANEL
WOULD AGREE ALL OF US CAN SIT
AROUND AND HAVE MANY PEOPLE HAVE
4 YEARS SITTING AROUND TALKING
ABOUT WHAT WE NEED. FROM MY
PERSONAL STANDPOINT WHAT WE NEED
IS ACTION, WE NEED REAL ACTION
TO PUSH FORWARD. WE NEED
RESULTS, WE NEED TO PUSH
SOMETHING FORWARD THAT GOES
THROUGH, GETS THINGS GOING AND
THERE WE CAN SHAPE AN FORM TO
WHAT COMMUNITY NEEDS AND
INDIVIDUALS LIVING WITH THIS
NEED. IT IS TIME TO PUSH
FORWARD AND NOT JUST TALK ABOUT
WHAT WE NEED BUT PUT INTO
ACTION. THAT IS MY TIME, THANK
YOU FOR HAVING ME. APPRECIATE
IT.
>> THANKS, JUSTIN. KATHY
MITCHELL.
>> GOOD AFTERNOON, EVERYBODY.
WOW, WHAT A PANEL, THANK YOU SO
MUCH FOR INVITING ME. I'M
ABSOLUTELY HUMBLED TO BE PART OF
THIS. SO I KNOW MANY OF YOU, IT
IS REALLY GOOD TO SEE SO MANY
FRIENDS HERE TODAY AND TATIANA,
GREAT JOB PUTTING ALL THIS
TOGETHER. SO I HAVE BEEN
INVOLVED IN WORKING IN THE FIELD
OF FASD SINCE THE '80s WHEN MY
THEN 15-YEAR-OLD DAUGHTER WAS
DIAGNOSED WITH FAS. SHE HAD BEEN
MISDIAGNOSED FOR MANY YEARS. I
AM A WOMAN ALSO IN LONG TERM
RECOVERY FROM ALCOHOLISM AND
DRUG ADDICTION. COMING UP ON 39
YEARS.MENT SO WHEN MY DAUGHTER
WAS DIAGNOSED IN THE '80s, I
WANTED TO TELL EVERYBODY THAT I
KNEW BECAUSE I KNEW SO MANY
PEOPLE IN MY EXPERIENCE BEING A
WOMAN IN -- AT THAT POINT SHORT
TERM RECOVERY THAT DID NOT KNOW
THAT DRINKING COULD CAUSE
PERMANENT DAMAGE TO THEIR
DEVELOPING UNBORN BABY. SO I GOT
BUSY AND I JUST STARTED TALKING
ABOUT THIS AND TALKING TO
CONGRESS AND GOT INVOLVED WITH
NOFAS BACK THEN WHICH IS FASD
UNITED AND END UNDERSTOOD A
BOARD MEMBER FOR THEM AND
VOLUNTEER AND SPEAKING ALL OVER
PLACE AND LATER WORKED WITH THEM
FOR YEARS. I AM A PERSON WHO HAS
BEEN VERY INVOLVED AND TATIANA
ASKED ME TO SPEAK TODAY JUST TO
GIVE THE PERSPECTIVE THAT IS
UNIQUE, WORKING WITH BIRTH
FAMILIES. I WORK WITH A LOT OF
YOUNG MOTHERS AND FATHERS THAT
ARE STRUGGLING. THAT ARE JUST
COMING TO GRIPS WITH THIS THING
CALLED FASD AND REALLY NOT
UNDERSTANDING WHAT IT IS, WHERE
TO FIND A DIAGNOSIS, HOW TO DEAL
WITH GETTING THE DIAGNOSIS. SO
JUST GOING TO RATTLE ON SOME OF
THOSE UNIQUE PERSPECTIVES AND
SPECIAL NEEDS MAYBE NOT ALL
FAMILIES WOULD HAVE. AND JUST TO
BACK UP, I WILL TELL YOU THAT MY
DAUGHTER CARLY SHE IS SEVERELY
AFFECTED. SHE IS NOW 50 YEARS
OLD, SHE LIVES IN A GROUP HOME,
SHE HAS FOR FOUR YEARS SO SHE
GETS ALL THE SERVICES THAT
ANYONE -- SHE IS A PERSON WITH
INTELLECTUAL DISABILITIES. AND
OF COURSE NONE OF THOSE SERVE AS
PROVIDERS -- SERVICE PROVIDERS
EVER KNOW WHAT FAS OR WHAT FASD
IS. SO IS THAT STILL GOES ON.LY
ALSO TELL YOU AND I THINK THIS
IS AN IMPORTANT PIECE BECAUSE WE
DON'T TYPICALLY TALK ABOUT THIS
WHEN WE TALK ABOUT FASDs AND
HOW IT AFFECTS FAMILIES AND
SERVICES NEEDED. BUT I HAD TWO
CHILDREN THAT DIED IN INFANCY.
ONE AT THREE MONTHS FROM SUDDEN
INFANT DEATH SYNDROME AND ONE
RIGHT AFTER BIRTH. I BELIEVE
BOTH OF THOSE CHILDREN DIED
BECAUSE I WASN'T GIVEN THE
OPPORTUNITY OF TREATMENT AND
THEY WERE SUBSTANCE EXPOSED. SO
I THINK THAT IS ANOTHER
IMPORTANT KIND OF PIECE. THE
UNIQUE PERSPECTIVE OF WOMEN AND
FAMILIES BIRTH FAMILIES THERE IS
A LOT OF GUILT, REMORSE AND
SHAME. THERE IS STIGMA NOT ONLY
STIGMA THAT COMES FROM THE
COMMUNITY FROM HEALTHCARE
PROVIDERS BUT THERE IS ALSO
SELF-STILING MA, THERE IS A LOT
OF DISDAIN OVERALL WHICH HAS
BEEN RESEARCHED AND WE CLEARLY
UNDERSTAND THAT THIS IS AN ISSUE
THAT KIND OF THE KNEE JERK
RESPONSE IS YOU DID THIS. HOW
CAN YOU COMPLAIN? HOW CAN YOU
ASK FOR ANYTHING? YOU DESERVE
NOTHING. YOU DID THIS TO YOUR
OWN CHILD. AND SO DEALING WITH
THAT. ANOTHER HAPPENING IN BIRTH
FAMILIES IS A LOSS OF FAMILY.
MOST FAMILIES THE PARENTS THAT I
DEAL WITH AND HAVE DEALT WITH
FOR OVER THE YEARS, DO HAVE
SUBSTANCE USE DISORDERS OR AN
ALCOHOL USE DISORDER, NOT ALL
BUT IT IS PRETTY RARE, I HAVE
GOT A FEW BUT MOSTLY THEY HAVE
ALL DEALT WITH ADDICTION. IN AND
OUT OF RECOVERY AND TREATMENT
CENTERS AND THAT SORT OF THING
BUT THERE IS A LOT OF ISOLATION
AND FEAR AND EMBARRASSMENT. AND
SHAME OVER TELLING A SYSTEM OF
CARE THAT OH, THE TRUE DIAGNOSIS
IS FASD. THE OTHER PIECE IS OUR
FAMILIES ARE NOT GETTING
DIAGNOSES. I STARTED A GROUP IN
2020, THE RECOVERY MOTHERS
ANONYMOUS OR MA, THAT ANYONE CAN
ACCESS, IT IS FREE ON ZOOM,
EVERY THURSDAY AT 7 P.M. EASTERN
TIME. IT'S BEEN WILDLY
SUCCESSFUL BUT A LARGE MAJORITY
OF OUR YOUNGER MOMS ARE WOMEN
WHO HAS BEEN ON MEDICATION
ASSISTED TREATMENT OR DEALT WITH
SUBSTANCE USE DISORDERS AND
PHYSICIANS HAVE FOCUSED ON THEIR
OTHER SUBSTANCE USE. THERE WAS
PLENTY OF ALCOHOL USE AND I CAN
CLEARLY SEE BECAUSE I GET TO
MEET THE KIDS ON ZOOM THAT PICK
THEM UP, THEY ARE ADORABLE BUT
FOR A LOT OF CHILDREN, CLEARLY
THEY HAVE THE FACIAL FEATURES
ASSOCIATED WITH FAS. SO NOBODY
IS ASKING THEM THOSE QUESTIONS,
THEY ARE ACTUALLY FINDING OUT
ABOUT FASDs FROM THE OLDER
MOMS LIKE MYSELF. BUT I WILL
CLOSE WITH JUST SAYING
EVERYTHING FROM TRANSPORTATION,
TO COMPUTERS TO SAFE
ENVIRONMENT, MANY LIVE IN
TRAUMATIC VIOLENT PLACES. SO
JUST HAVING A SAFE PLACE TO
LIVE. HAVING FOOD, LACKING
ESSENTIALS AN LACKING ESSENTIAL
SUPPORT. SCHOOL HELP AND
INTERVENTIONS THEY HAVE NO IDEA
HOW TO MANEUVER THROUGH THAT
SYSTEM. WILL IS JUST SO MUCH
THAT IS NEEDED AND IT DOES FEEL
OVERWHELMING BUT I WILL END WITH
THIS. I TRY TO STAY IN THE
SOLUTION. I TRY TO -- MY GIFT I
THINK IS REALLY PREVENTION JUST
BECAUSE OF MY LIVING EXPERIENCE,
THANK YOU, KAT, FOR THAT. AND
HAVING SELF-FORGIVENESS, MY
DAUGHTER HAS FORGIVEN ME, MY
DAUGHTER WHEN I HAVE TOLD HER
OVER AND OVER AGAIN YOU
UNDERSTAND WHY YOU CAN'T BRUSH
YOUR OWN TEETH VERY WELL. YES,
MOM, BECAUSE YOU DRANK WINE WHEN
YOU WERE PREGNANT, RIGHT. SHE
WILL SAY I KNOW MOM BUT YOU
DIDN'T KNOW. AND I SAID RIGHT.
BECAUSE I WOULD NEVER HURT YOU
ON PURPOSE. AND WAS SAYING MY
GRANDCHILDREN HAVE ALSO HAD TO
FORGIVE ME BECAUSE WHEN IT HITS
THE MEDIA BEFORE THERE'S A LOT
OF HATRED THAT COMES OUT IN THE
WORLD, THEY COME BACK AND SAY WE
ARE PROUD OF YOU AND WE LOVE THE
WORK THAT YOU DO AND KEEP
TALKING ABOUT IT. SO WITH THAT
I'M GOING TO STOP TALKING. AND
TURN IT BACK OVER TO JAN.
>> THANKS, KATHY. I'M GOING TO
OPEN THE FLOOR FOR QUESTIONS. I
HAVE SEVERAL THAT OCCURRED TO ME
LISTENING AND I HAVE A BUNCH I
HAVE BEEN WRITING DOWN THE LAST
FEW DAYS. ANYBODY ANYWHERE WHO
IS PARTICIPATING IN THIS, IF YOU
HAVE QUESTIONS, LET'S START A
DISCUSSION. WHAT I WOULD ASK IS
IF EVERYBODY CAN TURN THEIR
CAMERAS BACK ON SO WE CAN SEE
WHO IS WHO AND WHO IS ASKING
WHAT. THE FIRST THING I WANT TO
SAY WHEN I LISTEN TO THIS, I AM
STRUCK AND I KNOW KAT SAID IT
AND KATHY, BUT EVERYBODY IS
INDICATED IN ONE WAY OR THE
OTHER THAT INTERVENTION IS
PREVENTION. I'M JUST WONDERING
FROM THE PANEL, HOW YOU SEE
THAT. AND HOW DO YOU VIEW THAT.
LIKE FOR YOU, WHEN YOU SAY
INTERVENTION IS PREVENTION
BECAUSE THERE'S BEEN SO MUCH
FOCUS FOR SO MANY YEARS ON JUST
PREVENTING FASD. AND I THINK
WITH BEST OF INTENTIONS OVER THE
YEARS LOOKING AGENT HOW TO
EFFECTIVELY SUCCESSFULLY FROM A
STRENGTH BASED PERSPECTIVE HELP
PEOPLE WITH FASD TO BE
SUCCESSFUL HAS GOTTEN LOST IN
THE SHUFFLE. WITH THE BEST OF
INTENTIONS WITHOUT -- SO FROM
THE POINT OF VIEW INTERVENTION
IS PREVENTION, WONDERING WHAT
YOU GUYS THINK. WHOEVER WANTS TO
TACKLE THAT ONE.
>> I WILL JUMP IN JAN. FROM WHAT
I LEARN FROM DOING THE FASD
PROJECT, IF ANYBODY HAS WATCHED
IT OR HAD A CHANCE WE WILL DROP
A LINK TO HERE. AT THE END OF
THE FILM AS I TRAVEL ACROSS THE
COUNTRY AND I -- THE LAST
QUESTION THAT I INTERVIEWED
EVERYBODY I SAID WHAT IS IT DO
YOU LIKE SOMEONE -- I SAID WHAT
DO YOU WANT THE WORLD TO KNOW
ABOUT FASD. AND ACROSS THE BOARD
MAJORITY OF THE ANSWER WAS IT
WAS PREVENTABLE. NOT TO SAY HOW
IT IS PREVENTABLE BUT THAT IS
WHAT THE ANSWER CAME OUT
ORGANICALLY AS ASKED WHAT DO YOU
WANT THE WORLD TO KNOW ABOUT
FASD. WHAT IS THE MOST IMPORTANT
THING YOU LIKE TO GET ACROSS.
SO AT THE END OF THE FILM I HAVE
A SECTION THAT SAYS PREVENTABLE
PREVENTABLE PREVENTABLE. AFTER
TALKING WITH WISDAHL AND OTHER
PARENTS AND PEOPLE THAT HELPED
COLLABORATE AND PUT THIS FILM
TOGETHER, THE IDEA CAME CLEAR TO
ANSWER THE QUESTION IN THE WAY
THAT I HAVE COME TO UNDERSTAND
IT, JAN, IS THAT IF WE TURN OUR
ATTENTION TOWARDS INDIVIDUALS
LIVING WITH THIS, IT WILL TURN
OTHER PEOPLE'S ATTENTION TOWARDS
IT AS WELL. THEN WE HIT THAT
CRITICAL MASS OF UNDERSTANDING
OF WHAT FASD IS. SO MORE THAN
51% OF OUR GENERAL PUBLIC KNOWS
WHAT FASD STANDS FOR. AT THAT
POINT YOU ARE NOT SWIMMING
UPSTREAM BECAUSE IT CAUSES THIS
ORGANIC REACTION IN PEOPLE GO
OKAY HOW DID THEY GET THIS
DISABILITY? THE SAME PEOPLE ASK
HOW DO THEY GET AUTISM? YOU
DON'T NECESSARILY. BUT PEOPLE
ASK THAT QUESTION. I THINK THIS
THING IS THEY TURN ATTENTION TO
HELPING INDIVIDUALS LIVING WITH
IT AND WE CAN KIND OF PHOTO COPY
THAT FOR FASD AS WELL. KILLS TWO
BIRDS WITH ONE STONE, HELPING
INDIVIDUALS LIVE WITH IT AND
TURNING PEOPLE'S ATTENTION
TOWARDS THE DISABILITY WHICH
GAINS AN UNDERSTANDING OF WHERE
IT COMES FROM WHICH LEADS TO
NATURAL PREVENTION.
>> KAT, WHAT DO YOU SAY?
>> I AM GOING TO NEED A MOMENT
TO PROCESS THE QUESTION AND WHAT
JUSTIN JUST SAID. CAN YOU GIVE
ME A MINUTE?
>> YES, I CAN. IN THE MEANTIME,
EVERYBODY WHO DOESN'T HAVE THEIR
CAMERA ON, PLEASE CAN I GET YOU
TO TURN IT ON SO THEY CAN SEE
YOYOU. REBECCA, DID YOU HAVE
SOMETHING TO SAY ABOUT THAT? YOU
ARE ON MUTE. .
>> (INAUDIBLE)
>> YOU ARE ON MUTE, REBECCA.
STILL ON MUTE. REBECCA, WHILE
YOU FIX YOUR MUTE PROBLEM,
ANYBODY ELSE WANT TO ADDRESS
THAT?
>> JAN, I WOULD LIKE TO SAY
HAVING SPOKEN TO PROBABLY WELL
OVER A THOUSAND PEOPLE ABOUT
FASD AND HOW IT COMES ABOUT AND
THE PURPOSE IS NOT PREVENTION
PER SAY, IT IS ABOUT INTERVENTION
AND GETTING FOLKS IN NORTH
CAROLINA DIAGNOSED. MANY THAT
PROCESS I AM RAISING AWARENESS
OF FASD, HOW IT OCCUR, AND THERE
IS A RIPPLE EFFECT OF THAT, SO
THAT OTHER PEOPLE TAKE THAT IN
TO CONSIDERATION. I THINK
INTERVENTION IS ALWAYS
PREVENTION BUT PREVENTION IS NOT
ALWAYS INTERVENTION WITH THOSE
PEOPLE WHO ARE LIVING WITH FASD.
I KNOW EVERY YEAR JUST IN NORTH
CAROLINA WHICH IS NOT A HUGE
STATE, WE HAVE 7,000 PEOPLE THAT
ARE BORN WITH AN FASD THAT DOES
NOT COUNT MISCARRIAGES. AND
THAT IS OVERWHELMING TO THINK
ABOUT.
>> VERY LARGE NUMBER. ANYBODY
ELSE IS THINKING ABOUT THAT, I'M
JUST THINKING ABOUT THE
ELIGIBILITY ISSUE FOR SERVICES.
I THINK WHAT I'M HEARING AND
CERTAINLY MY EXPERIENCE OVER THE
YEARS TOLD ME THIS IS A REALLY
SIGNIFICANT PROBLEM. WHEN
SERVICES ARE BASED ON AN
INTELLECTUAL DISABILITY MODEL
AND 75% OF PEOPLE WITH FASD
DON'T HAVE THAT THEY DON'T
QUALIFY FOR SERVICES AND
THEREFORE A QUESTION IN MY MIND
HAS ALWAYS BEEN HOW MUCH IS A
NEGATIVE -- NEGATIVE OUTCOMES
RATHER THAT WE SEE RELATED TO
THAT THAT COULD BE POTENTIALLY
PREVENTED AMELIORATED
SIGNIFICANTLY IF WE DIDN'T DO
THAT. I -- KAT MENTIONED
SOMETHING THAT IS OCCURRING
HERE. IN BRITISH COLUMBIA, IN
TERMS OF OUR PERSONS WITH
DISABILITY PROGRAMS ARE NOW --
FINANCIAL SUPPORT PIECES, ARE
BASED ON DIAGNOSIS AND NOT IQ.
THAT IS A FAIRLY SIGNIFICANT
MOVE TO TAP IN-- THAT'S HAPPENED
HERE THE LAST TEN YEARS. IT IS
MADE I THINK CORRECT ME IF I'M
WRONG, KAT, YOU ARE THE ONLY ONE
HERE FROM BC, IF THAT TO THE
BEST OF MY KNOWLEDGE THAT MADE A
SIGNIFICANT DIFFERENCE IN PEOPLE
BEING ABLE TO ACCESS THAT BASED
ON DIAGNOSIS AND ABLE TO WORK
PART TIME ON TOP OF IT AND KEEP
THAT MONEY. MAKE AS DIFFERENCE
IN TERMS OF QUALITY OF LIFE AND
YOUR ABILITY TO JUST PLAIN
SURVIVE. KAT, ANY THOUGHTS ABOUT
THAT? YOU WORK AS A MENTOR.
>> ABSOLUTELY. I KNOW WHEN I
STARTED WORKING AT 15,
MCDONALDS, THAT'S TAKING ME
BACK, I WASN'T RECEIVING PWD YET
SO THERE WAS CERTAIN STANDARDS
THAT I HAD TO MEET IN TERMS OF
YOU HAVE TO BE THERE CERTAIN
DAYS AND YOU HAVE TO CLOSE AND
YOU HAVE TO OPEN AND AT THE SAME
TIME I WAS GOING TO SCHOOL AND
IT WAS A LOT. FAST FORWARD TO
WHEN I STARTED RECEIVING PWD, IT
DEFINITELY HELPED OUT
FINANCIALLY. BECAUSE SINCE I
STARTED RECEIVING PWD, HONESTLY
THAT'S BEEN MY RENT. THAT IS HOW
I HAVE BEEN ABLE TO LIVE
BASICALLY. AND PAY MY RENT. AND
I WOULDN'T BE ABLE TO LIVE
WITHOUT IT, I DON'T MAKE NEAR
ENOUGH, I CANNOT WORK FULL TIME,
I DON'T HAVE THE STAMINA FOR IT.
AS I MENTIONED I AM A MENTOR AND
I'M VERY LUCKY WITH MY POSITION.
AND MY JOB. I CANNOT WORK FULL
TIME I HAVE A SET NUMBER OF
HOURS A WEEK. THAT IS ALL I CAN
DO MENTALLY. MENTORING IS A VERY
-- IT CAN BE TAXING MENTALLY. SO
WITHOUT THE ASSISTANCE FROM PWD
I WOULD NOT, I DON'T KNOW WHERE
I WOULD BE IF I'M COMPLETELY
HONEST. I REALLY DON'T.
>> REBECCA, SAME QUESTION. YOU
HAVE A JOB THAT ALLOWS YOU TO DO
THE SAME THING OVER AND OVER AND
OVER AGAIN, IT IS REPETITIVE,
WORKS FOR YOU, IT IS EXACTLY THE
STRUCTURE ROUTINE REPETITION YOU
NEED. WHAT WOULD HAPPEN TO YOU
IF THAT JOG WASN'T THERE, IF YOU
COULDN'T HAVE THAT KIND OF JOB?
>> THAT IS A GOOD QUESTION.
DIFFICULT BEFORE I HAD THAT JOB
I WENT TO SCHOOL TO BE A SPEECH
THERAPIST. AND THERE IS A LOT OF
DIFFERENT FOR A LOT OF REASONS
BUT IT WASN'T REPETITIVE AND
VERY ABSTRACT. BECAUSE NOT ONE
CHILD AS WITH KNOW IS THE SAME
WHEN IT COMES TO EDUCATING. AND
MY BRAIN COULDN'T WRAP ITSELF
AROUND HOW TO WORK AS SPEECH
THERAPIST. THAT WOULD HAVE BEEN
MY FALL BACK BUT THAT DIDN'T
WORK OUT. I DON'T KNOW WHAT -- I
WANT TO SAY I WOULD BE OKAY
BECAUSE THERE IS JOBS IN THE
INSURANCE INDUSTRY BUT THAT
COULD ME BEING NAIVE. I AM VERY
LUCKY. I DO HAVE MY STRUGGLES
WITH THE JOB ESPECIALLY WHEN NEW
THINGS COME OUT, NEW SYSTEMS AND
I TAKES ME LONGER TO GRASP THEM
IS IT PROBABLY WOULD NOT BE
POSITIVE IF I DIDN'T. I HAVE
BEEN VERY LUCKY.
>> WHAT DO YOU -- I KNOW THAT
CHRISTIE PETRENKO HAS SOMETHING TO
SAY, BUT BEFORE YOU DO CHRISTIE,
I WANT TO -- MAYBE YOU SHOULD
ASK FIRST THEN I WILL ASK PA
QUESTION I WANT TO ASK.
>> I WAS GOING TO COMMENT
REGARDING THE ELIGIBILITY FOR
SERVICES IN THE COMMUNITY BEING
TIED TO DIAGNOSIS AND JUST VALUE
OF GETTING THOSE SERVICES WE
KNOW FROM RESEARCH, SOME OF THE
SEMINOLE WORK THAT (INAUDIBLE)
DID IN THE '90s THAT DIAGNOSIS
ARE GETTING DEVELOPMENTAL
DISABILITY SERVICES IS ONE OF
THE MOST PROTECTIVE FACTORS FOR
ADVERSE OUTCOMES. WE ALSO I OOH
IN NEW YORK AND RIGHT NOW FASD
IS NOT RECOGNIZED AS
DEVELOPMENTAL DISABILITY IN THE
STATE THROUGH LEGISLATION SO WE
CAN ONLY GET A VERY, VERY FEW
PEOPLE WITH FAS WHO MEET CDC
CRITERIA QUALIFIED WITH OTHER
THINGS MET. SO WE GOT -- WE HAVE
TRIED INCREASING AWARENESS,
MEETING WITH OPWDD WHICH IS OUR
DISABILITY ORGANIZATION NEW
YORK, WE TRIED ALL THE
STRATEGIES AND WE COME TO
LEGISLATIVE APPROACH WHERE
GOVERNMENT RELATIONS DEPARTMENT,
UNIVERSITY OF ROCHESTER HAS BEEN
SPEARHEADING WITH LEGISLATORS IN
THE STATE TO ADD. IT HAD BEEN AN
UPHILL BATTLE AND PUSH BACK
COMES FROM DISABILITY AGENCY
ITSELF BECAUSE THEY SEE IT AS A
FISCAL PROBLEM. AND IT WILL
CREATE MORE DEMAND FOR LIMITED
SERVICES AS IT IS BUT IT IS AN
EQUITY CHALLENGE THERE ARE
PEOPLE WHO ARE GETTING SERVICES
WHO HAVE SIMILAR OR FEWER
SUPPORT NEEDS AS FOLKS WITH FASD
SO WE ARE PERSEVERING BUT IT
VARIES A LOT IN THE US.
>> YOU ARE INDICATING SOMETHING
TALKED ABOUT IN HERE, KATHY, THE
STIGMA PIECE? AND HOW STIGMA
SPREADS TENTACLES THROUGHOUT AND
HOW IT IMPACTS EVERYTHING DAMAGE
PUT A QUESTION, WONDERING IF THE
PANEL HOW TO ADDRESS THE
PREVENTION MESSAGE. TO ADDRESS
PREVENTION WITHOUT CONVEYING
THAT PEOPLE WOULD PREFER YOU NOT
BE YOU BECAUSE WORKING WITH THE
CHANGE MAKER GROUP THIS IS A
DISCUSSION AMONG LARGE GROUP
AROUND CAUSED BY SOMETHING AND
LESS THAN AND HOW THAT MESSAGING
HAS BEEN INADVERTENTLY USED IN
WAYS NEVER INTEND AND HOW THAT
STIGMA AND STEREOTYPING PIECE
AFFECTED WOMEN AND PEOPLE WITH
FASD. DO YOU HAVE ANYBODY GOT A
THOUGHT WHEN YOU LOOK AT
PREVENTION, WHAT WOULD YOU
CHANGE? HOW WOULD YOU CHANGE IT?
THAT IS A BIG QUESTION. IF YOU
CAN'T ANSWER IT, I DON'T HAVE AN
ANSWER. KATHY, DO YOU?
>> I DON'T KNOW THAT I CAN GET
AT WHAT DAN IS ASKING. BUT I DO
WANT TO MAKE ONE BRIEF POINT
ABOUT THE INTERVENTION IS
PREVENTION.
WHEN WE THINK INTERVENTION IT IS
TWOFOLD, IT IS INTERVENTION WITH
THE CHILD OR ADOLESCENT OR
ADULT, THAT'S BEEN AFFECTED AND
CERTAINLY THE MOTHER. BUT WHEN
WE DIAGNOSE ONE CHILD WITH AN
FASD, THE PREVENTION IS JUST --
IT IS UNMEASURABLE REALLY
BECAUSE AGAIN FOR A LOT OF THESE
WOMEN THEY ARE IN AND OUT OF
SYSTEMS OF CARE, WHEN THERE IS
ONE CHILD WITH THAT DIAGNOSIS
NOT ONLY THE SCHOOLS BUT
ADDICTION TREATMENT CENTER THE
MENTAL HEALTH PLACE, PEOPLE ARE
LEARNING WHAT IS IT? I NEVER
HEARD OF IT THAT IS HOW THEY ARE
LEARNING. BUT INTERVENTION WITH
THE MOTHER INTO SUPPORT SERVICES
INTO ADDICTION TREATMENT
SERVICES, I MEAN CLEARLY THERE
IS NO BETTER PREVENTION. SO I
JUST REALLY WANTED TO MAKE THAT
POINT. BUT THE OTHER THING I DID
WANT TO SAY, EVEN IN THE DC
AREA, THERE IS NO DIAGNOSIS, NO
GO TO PERSON FOR DIAGNOSIS,
PEOPLE CAN'T GET INTO THE PEOPLE
USE TO TO KENNEDY KREIGER FOR A
DIAGNOSIS. THE IDEA THE
DIAGNOSIS PLEAD LEAD TO SERVICES
MAKES COMPLETE SENSE AND GLAD IT
IS WORKING IN BC BUT HERE WE
HAVE PEOPLE WITH EXPOSURES LOTS
OF EXPOSURES BUT FOCUSED ON DRUG
EXPOE SHEER REPRODUCIBILITY SURE
THERE IS NO RECOGNITION THAT
THEY WERE USING ALCOHOL SO WE
HAVE THAT ISSUE TO CONTEND WITH.
SO THE DIAGNOSIS IS WE ARE SO
FAR BEHIND IN THAT AT LEAST IN
THIS AREA. I WANTED TO SPEAK TO
THAT. MAYBE SOMEBODY ELSE CAN
SPEAK TO DAN'S QUESTION.
>> I THINK TO NOTE ON THAT, FAS
REALLY ISN'T LIKE A DESIGNER
DISABILITY, IT IS MORE OF LIKE
IT IS MORE OF LIKE DEPENDS ON
THE PERSON, IT IS NOT LIKE THIS
BIG THING THAT EVERYONE IS
REALLY AWARE OF BECAUSE AS WE
SEE WITH LIKE AUTISM, DOWN
SYNDROME, THESE BIGGER NAMES,
MORE PEOPLE WANT TO PUT MORE
ATTENTION INTO THAT WHERE AS
KIDS WITH FAS ARE STUCK
STRUGGLING BUT PEOPLE ABOUT
AWARE OF THAT FACT. SO WE ARE
TRYING TO I GUESS IT NEEDS TO BE
MORE LIKE THE PARENTS NOT REALLY
I DON'T WANT TO TELL THEM NOT TO
DRINK BUT LIKE TO MAKE THEM
AWARE THAT THERE ARE OTHER KIDS
THAT ARE SUFFERING BECAUSE OF
THE MOTHERS CHOICES. I THINK
I'M UNDERSTANDING WHAT THIS
QUESTION IS. WE NEED TO, LIKE
THE MOTHER, SOMEONE SAID THAT
YOU CAN'T REALLY TELL THEM NOT
TO BE THEMSELVES. BECAUSE PEOPLE
OBVIOUSLY WANT TO DRINK. A LOT
OF PEOPLE WANT TO DRINK. BUT
JUST TO MAKE THEM AWARE OF THERE
ARE THINGS THAT HAPPEN, THERE
ARE CONSEQUENCES TO EVERY ACTION
AND IT IS THEIR DECISION. SO IF
THEY WANT TO MAKE THE LIFE OF
THEIR CHILD A BETTER PLACE THEN
THAT IS THEIR DECISION. IF THAT
HELPS AT ALL. TO ANSWER THE
QUESTION.
>> CHRISTIE SAID READ DAN'S
QUESTION, THIS IS A MUCH MORE
EFFECTIVE PIECE HERE. THE KEY
IS SHOWING THE FULL PERSON AND
WHAT HELPS PEOPLE THRIVE LIFE
GIVING PARENT AND PIPE WILL THE
FASD RATHER THAN THE STEREOTYPES
OF HOW PRE-NATAL ALCOHOL
EXPOSURE HAPPENS AND WHAT IT
LOOKS LIKE. AND THE KEY PIECE
SHE IS SAYING THERE, IT DUDN'T
LOOK LIKE SOMETHING. IT IS SO
VARIABLE. WHEREAS IN MANY OTHER
DISABILITIES, PEOPLE KIND OF --
I WILL PICK DOWN SYNDROME IT IS
ONE PEOPLE REALLY GRASP. IS WHEN
THEY SEE A PERSON WITH DOWN
SYNDROME THEY AUTOMATICALLY
ADJUST THEIR EXPECTATIONS AND
THEY START TO ACCOMMODATE,
WHEREAS WHEN YOU TALK FASD
PEOPLE THINK BEHAVIOR BAD KID
BAD PARENT. THEY ARE NOT
GRASPING THE DIFFERENCES. AND I
THINK THAT AGAIN GOING BACK TO
DISCUSSIONS THAT I HAVE BEEN
PRIVILEGED TO BE PART OF WITH
LARGER GROUP, THE IDEA THAT
SOMEHOW THEY ARE LESS THAN AND
NOT VALUABLE, AND COMES BACK TO
STIGMA STEREOTYPE WHICH IS A
VERY SIGNIFICANT CONVERSATION
THAT NEEDS TO HAPPEN. AND I
THINK IT IS ACTUALLY OUTSIDE
WHERE WE WANT TO GO RIGHT HERE.
SO I'M GOING TO MOVE AWAY FROM
THAT IF I CAN AND I'M GOING TO
ASK EACH ONE ON THE PANEL YOU
HAVE PEOPLE IN YOUR LIFE THAT
ARE A MAJOR SUPPORT. MY QUESTION
TO YOU AND IF YOU DON'T WANT TO
ANSWER, PLEASE SAY SO, WHAT
WOULD HAPPEN IF THE MOST
IMPORTANT PERSON WHO SUPPORTS
YOU WASN'T THERE? IF THEY
SUDDENLY AT THIS APPEARED
TOMORROW, WHAT WOULD --
DISAPPEARED TOMORROW, WHAT WOULD
HAPPEN?
>> I WILL ANSWER THIS FIRST. I
THINK LIKE MY GRANDMOTHER IS
OBVIOUSLY MY BIGGEST SUPPORT
SYSTEM. AND THROUGHOUT MY LIFE
LIKE IF SHE WASN'T THERE, GOD
KNOWS WHERE I WOULD BE RIGHT
NOW. I COULD BE IN VERY WELL BE
IN JAIL RIGHT NOW. BUT TESTIFY
SHE WERE TO DUST JUST DAYS PEER,
I WOULD BE EFFORT WILL ON MY --
DISAPPEAR, I WOULD BE ON MY OWN.
I UNDERSTAND A LOT OF KIDS WITH
FAS STRUGGLE WITHOUT THAT
SUPPORT SYSTEM. IS THEY TRY TO
HELP THEMSELVES UNDERSTAND THEIR
SURROUNDINGS THAT ADULT USUALLY
HAS TO BE THERE. I HONESTLY
THINK IF MY GRANDMOTHER
DISAPPEARED I WOULD PROBABLY BE
IN JAIL OR ON THE STREETS RIGHT
NOW.
>> REBECCA, WHAT DO YOU THINK?
>> SO I'M 43, MANY OF US ARE
HAVE DISMATURITY OF HALF OF OUR
ACTUAL AGE. I'M 21. I STILL NEED
THE SUPPORT. WOULD I BE OKAY
WITHOUT MY HUSBAND AND WITHOUT
MY PARENTS WHO ALSO JUMP IN WHEN
NEEDED? SOME DAYS I THINK I
WOULD BE FINE BUT IN REALITY, HI
WOULD BE IN A LOT OF DEBT. MONEY
IS AN ISSUE FOR MANY OF US
INCLUDING MYSEL MYSELF. IMPULSI.
I'M PEER PRESSURE AD LOT EVEN AT
43. IMPULSIVITY PIECE PLAYS INTO
THAT. BUT IF I DIDN'T HAVE MY
HUSBAND, EVEN MY KIDS, THEY ARE
OLD ENOUGH TO UNDERSTAND AT
BASIC LEVEL WHAT I HAVE, IF I
HAVE A FRIEND LIKE OH LIT'S TAKE
A TRIP HERE, I GET HYPED UP AND
MY IMPULSIVITY SAYS OKAY LET'S
DO IT IT. I DON'T THINK ABOUT E
MONEY PIECE, I DON'T THINK ABOUT
MY HUSBAND HAS TO TAKE CARE OF
KIDS FOR THE NEXT THREE DAYS
WHICH HE CAN DO BUT THAT IS NOT
FAIR. SO I NEED HIM, I NEED MY
FAMILY. WOULD I BE OKAY?
THEORETICALLY BUT I THINK I
WOULD BE IN DEBT AND I THIS I
DEBT WOULD BE MY NEW NORMAL AND
I THINK I WOULD THINK IT WOULD
BE OKAY BUT IT WOULDN'T BE. I
HAVE -- I'M STABLE RIGHT NOW. IF
I DIDN'T HAVE HIM, IF I DIDN'T
HAVE KIDS, I DO LIKE TO GO OUT
AND BE SOCIAL. BUT NOW I HAVE
SOMETHING TO COME HOME TO, IF I
DIDN'T HAVE THAT I HONESTLY
DON'T KNOW WHERE I WOULD BE
BECAUSE WE ARE BORN ADDICTS.
I'M NOT AN ADDICT BUT IT IS A
SCARY THOUGHT. AND I AM VERY
LUCKY. THOSE SUPPORTS ARE
NEEDED. ABSOLUTELY.
>> KAT.
>> FOR ME, THERE'S TWO PIECES
HERE. WHAT NICK AND REBECCA
MENTIONED, THEY HAVE MENTIONED
PEOPLE IN THEIR LIFE WHO ARE
FAMILY MEMBERS. I OBVIOUSLY
HAVE THOSE PEOPLE TOO BUT THERE
IS ANOTHER PIECE HERE OF I HAVE
A SUPPORT WORKER. SHE IS PAID
TO BE IN MY LIFE VERSUS THOSE
WHO ARE NOT PAID TO BE IN MY
LIFE. THERE IS THAT HUGE
DIFFERENCE. SO I WILL ENHANCE
THIS A LITTLE BIT. IF MY SUPPORT
WORKER SUDDENLY DISAPPEARED I
KNOW I STILL HAVE PEOPLE IN MY
LIFE NOT PAID TO BE THERE AND
THEY ARE THERE UNCONDITIONALLY
NO MATTER WHAT. IF THE PEOPLE IN
MY LIFE WHO ARE NOT PAID
DISAPPEARED, THAT WOULD BE A
COMPLETELY DIFFERENT STORY. IF
EVERYONE DISAPPEARED, I WOULD
NOT LAST LONG. I KNOW THAT. I
WOULD GET BY FOR A LITTLE BIT.
BECAUSE I WOULD GO INTO AUTO
PILOT AS I USUALLY DO BUT I
WOULD NOT -- I WOULD NOT BE ABLE
TO FUNCTION FOR LONG. I NEED
THAT SUPPORT AND AS MUCH AS I
VALUE MY SUPPORT WORKER AND ONE
THING NICK AND REBECCA HAVE SAID
MOVING OUTSIDE WHAT ALLUDED TO
IS THE FACT THAT THOSE PEOPLE IN
OUR LIVES WHO ARE NOT PAID TO BE
MANY OUR LIVES ARE THERE BECAUSE
THEY WANT TO SUPPORT US. IT
MEANS MUCH MORE.
>> JUSTIN.
>> FOR ME, TRUTH BE TOLD, I
WOULDN'T BE SITTING HERE RIGHT
NOW IF THE MOST IMPORTANT PERSON
WHICH IS MY WIFE WASN'T THERE TO
ADVOCATE AND HELP ME. I PROBABLY
WOULDN'T BE LIKE ALIVE RIGHT
NOW. IN DECEMBER WHEN I FOUND
OUT I HAD THIS HEART CONDITION I
HAD A DISMISSSIVENESS FROM THE
DOCTORS AND THEM WANTING TO RUN
TESTS ON ME, WHICH MEANS ONE OF
THOSE TESTS COULD HAVE KILLED
ME, INSTEAD OF LETING THAT
HAPPEN SHE GOT ON THE PHONE WITH
MAYO CLINIC AND BADGERED THEM
UNTIL THEY GOT ME IN HERE. I'M
SITTING HERE TODAY BECAUSE OF
THAT. IF SHE DISAPPEARED TODAY
MY LIFE WOULD PROBABLY LOOK LIKE
IT DID BEFORE I MET HER WHICH IS
SUBSTANCE ABUSE, MENTAL HEALTH
ISSUES, UNCHECKED, PROBABLY
WHICH WOULD THEN CAUSE ME NOT TO
BE ABLE TO HOLD DOWN A JOB OR
RUN MY COMPANY SUCCESSFULLY. SHE
-- EVEN JUST THE LITTLE WAYS, WE
MOVE IN LOCK STEP TOGETHER SHE
HELPS ME ORGANIZE MY EMAILS AND
MY SCHEDULE AND ALL THAT STUFF
AND WITHOUT IT, WHETHER IT WAS
COMBINATION OF FASD OR ADHD,
WHEN I'M DISORGANIZED I FALL
BEHIND I GET DEER IN THE HEAD
LIGHTS AND I.
NOT AS FUNCTIONAL AS I CAN BE.
WHICH I CAN BE VERY FUNCTIONAL,
I CAN DO A LOT. I'M LUCKY LIKE
THAT. I'M THANKFUL AND GRATEFUL
BUT NOT WITHOUT THE SUPPORT. I'M
NOTHING WITHOUT IT. SO THAT'S
WHERE I WOULD BE. AGAIN LIKE I
SAID, PROBABLY WOULDN'T BE SIT
HEARING IF IT WASN'T FOR HER
ADVOCACY AND GOING TO BAT FOR
ME.
>> WHAT YOU ARE SAYING AND I'M
GOING TO SPEAK TO 40 YEARS OF
EXPOO WORKING IN THE FIELD OF
FAST AND KNOWING HUNDREDS AND
HUNDREDS OF ADULTS WITH THE
DISABILITY, WHAT YOU ARE ALL
INDICATING IS SOMETHING THAT IS
A LESSON FOR SERVICES SUPPORTS
AND SYSTEMS. A LOT OF PEOPLE
PROBABLY BY PHARMA YOURTY OF
ADULTS WITH FASD DON'T NEED
MASSIVE SERVICES THAT ARE
EXTRAORDINARILY EXPENSIVE TO
FUND ALL OF A SUDDEN FOR THIS
HUGE GROUP OF PEOPLE. WHAT
SYSTEMS NEED TO FIGURE OUT IS
HOW TO PROVIDE KIND OF SUPPORT
THAT IS HARD TO REALLY QUANTIFY
AND QUALIFY IN A PANEL LIKE
THIS, BUT THAT SAYS WHEN THEY
NEED THE SUPPORT THEY NEED TO
SUPPORT. THEY NEED IT RIGHT NOW
FOR THIS ITEM. IT ISN'T THAT I
NEED TO BE AS KAT INDICATED TO
BE TAUGHT THINGS OVER AND OVER
AGAIN, BUT RIGHT AT THIS MOMENT
I NEED SOMEONE WHO DO WHATEVER
IT IS FOR ME BECAUSE MY BRAIN AT
THIS MOMENT IS NOT ALLOWING IT
TO HAPPEN. WHETHER IT IS
ORGANIZE, WHETHER IT IS REMEMBER
HOW TO VACUUM THE FLOOR, WHETHER
GO GROCERY SHOP -- DOESN'T
MATTER WHAT IT IS. AND IT IS
QUITE -- ALSO HAVING I SHOULD
ALSO SAY I HAVE PARROTED FROM --
PARENTED FROM CHILDHOOD TO
ADULTHOOD TWO CHILDREN WITH
DIFFERENT DISABLES WHO ALSO HAVE
INTELLECTUAL DISABILITY AND THE
NEEDS ARE VERY DIFFERENT IN
ADULTHOOD IN TERMS OF WHAT
SUPPORTS NEED TO LOOK LIKE. I
THINK THEY ARE RAISING AN ISSUE
HERE THAT REALLY NEEDS SOME
THOUGHT AND CONSIDERATION.
BECAUSE WE HAVE A LOT OF PEOPLE
WITH THIS DISABILITY WHO ARE
ADULTS AND THEY ARE OFTEN FOUND
IN VERY HIGH COST SYSTEMS THAT
ARE REACTIVE, JAILS, ON THE
STREET, HOMELESSNESS, ADDICTION.
PLACES WHERE THEY SHOULDN'T BE
AND DON'T HAVE TO BE. BUT WE
HAVEN'T DONE AND WE DON'T THEN
CONTINUE TO DO THEY HAVE ALL
INDICATED IF THEY DIDN'T HAVE
PEOPLE IN THEIR LIVES AND THESE
ARE UNFUNDED PEOPLE BUT WHAT
HAPPENS IF THEY DISAPPEAR FOR
WHATEVER REASON? OR WHO KNOW
WHAT IS? BUT THAT CAN HAPPEN. SO
I'M GOING TO ASK EVERYBODY ON
THE PANEL TO TAKE CONSIDERATION
TO THAT. THEN I WANT TO MENTION
SOMETHING BECAUSE KAT HAS ASKED
ME OR NOT KAT, SORRY, TATIANA TO
MENTION SOMETHING THAT SHE AND I
KNOW HAVE DISCUSSED BECAUSE IT GOES BACK
TO THE EDUCATION PIECE. IN
BRITISH COLUMBIA AND THE
PROVIDENCE OF ALBERTA, IN PB
CALLED THE PROVINCIAL OUTREACH
PROGRAM FOR FASD AND ALBERTA
CALLED RAP 2 GOVERNMENT FUNDED
AMAJOR EDUCATION PROGRAMS FOR
THE SCHOOLS, WHICH ARE NOT JUST
THEY INVOLVE CONSULTANTS, TRAIN,
THEY INVOLVE ONLINE SUPPORTS
INVOLVE GOING INTO THE SCHOOL.
THEY INVOLVE HELPING SCHOOLS
UNDERSTAND STUDENT THEY HAVE
WITH FASD WHAT TO DO, HOW TO DO
IT AND BEING AVAILABLE TO THE
SCHOOL TO PROBLEM SOLVE, ET
CETERA. THEY ARE ALL THROUGHOUT
THE PROVINCE. THEY ARE VERY
SPECIFICALLY TARGETING HOW DO WE
CHANGE SCHOOL FOR CHILDREN WITH
FASD AND MAKE IT A BETTER
EXPERIENCE WHERE THEY ARE
LEARNING AND WHERE THEY ARE
HAVING SUCCESS AND NOT SEEN AS
QUOTE BEHAVIOR PROBLEM UNQUOTE.
THE WORD BEHAVIOR SHOULD BE LOST
FROM EVERYBODY'S VOCABULARY WHEN
IT COMES TO FASD BECAUSE IT IS
NOT BEHAVIOR. IT IS BRAIN
DIFFERENCE, IT IS A FUNCTIONAL
PROBLEM HOW THE BRAIN IS
PROCESSING INFORMATION. BEHAVIOR
IS NEVER LOOKED AT AS A POSITIVE
THING. WE DON'T TALK ABOUT GOOD
BEHAVIOR, WE ARE TALKING ALL
THESE THINGS WITH PEOPLE WITH
FASD, IT IS ALWAYS BAD BEHAVIOR.
SO SHE ASKED THAT I MENTION THAT
BECAUSE THAT IS A SYSTEM WIDE
CHANGE PROVINCES OF BC AND
ALBERTA PUT IN PLACE. AND THEY
HAVE BEEN IN PLACE QUITE A FEW
YEARS, THEY STARTED AS PILOT
PROJECTS. THEY WERE SO EFFECTIVE
THEY BECAME PROVINCIAL
GOVERNMENT WHAT WE CALL MINISTRY
OF EDUCATION WHICH IS EQUIVALENT
TO WHATEVER THE STATE DEPARTMENT
WOULD BE OR THE FEDERAL
DEPARTMENT. AND THEY HAVE MADE
REALLY SIGNIFICANT DIFFERENCE.
IF YOU TALK AGAIN THAT
INTERVENTION IS PREVENTION AND
DOING THAT AT ALL DIFFERENT
LEVELS, IF YOU DO IT IN ENOUGH
PLACES, ALL THOSE PIECES BEGIN
TO COME TOGETHER AND ACTUAL
CHANGE STARTS TO HAPPEN.
CERTAINLY IN B.C. A WHOLE BUNCH
OF THOSE THINGS HAVE HAPPENED
THE LAST 20 YEARS AND THEY HAVE
SLOWLILY COALESCED AND COME
TOGETHER WHERE YOU HAVE A
PROVINCE-WIDE AWARENESS,
KNOWLEDGE, EDUCATION, SUPPORT.
UNDERSTANDING ON A LEVEL THAT
DOES ALLOW THINGS TO DO
DIFFERENTLY. IT'S MOVED IN ALL
OF OUR SYSTEMS FROM A GOVERNMENT
FUNDING LEVEL. I WILL THROW
SOMETHING OUT THAT OUR
PROVINCIAL GOVERNMENT IN APRIL,
KAT YOU WILL BE AWARE OF THIS,
HAS SOME EXTRA MONEY WITHIN OUR
CHILD PROTECTION FIELD AND WHAT
THEY HAVE CHOSE TO DO WITH THAT
MONEY WAS TO TELL EVERY
ADVERTISE -- EVERY FAMILY IN THE
PROVINCE WHO HAD A CHILD FROM
BIRTH TO 19 WITH FASD WE ARE
GOING TO DO A DRAW FOR THIS,
JUST APPLY ONLINE FOR IT AND YOU
CAN HAVE A DRAW AND YOU WILL GET
$6,000 TO USE FOR YOUR CHILD AS
YOU SEE FIT. WE ARE NOT
GOING TO TELL YOU HOW TO SPEND
IT WE NOT GOING TO TELL YOU WHAT
TO DO WITH IT OR DEMAND
RECEIPTS. WE WILL WILL TRUST AS
A PARENT YOU KNOW WHAT YOU ARE
DOING. SO 400 FAMILIES RECEIVED
A GRANT OF $6,000 EACH. THAT WAS
A COMPLETELY NOVEL CONCEPT ABOUT
SAY PEOPLE NEED MENTAL HEALTH
SUPPORTS THAT COST MONEY, THEY
NEED MEDICAL CARE, PEOPLE
ALLUDED TO THAT COST MONEY. THEY
NEED JOB COACH, ALL KIND OF
THINGS YOU MAY NOT HAVE
AVAILABLE. BUT WHAT THEY DID
HERE WAS JUST SAY EVENINGS TRAY
FUND, LET'S DO IT AND SEE' EXTRA
FUNDS. THERE ARE NOVEL THINGS
HAPPENING IN OTHER PLACES OUTS
THERE. MENTORING IS ANOTHER
ISSUE. WE DO HAVE MENTORS HERE,
THEY ARE TRAINED. PROVINCE OF
ONTARIO IS SET UP A MENTORING
PROGRAM WHERE THEY JUST HIRED
THEIR FIRST SIX MENTORS IN THE
ADOPT FOR LIFE PROGRAM. WHERE
THEY GOING TO RECEIVE 60 HOURS
OF TRAINING AND THEN THEY ARE
GOING TO WORK AS MENTORS UNDER
CLINICAL SUPERVISION WITH NOVEL
CONCEPT THAT PEOPLE WORKING WITH
MENTORS SHOULD HAVE PROPER
SUPERVISION BECAUSE THEY SHOULD.
THERE THERE ARE THINGS BEGINNING
TO HAPPEN THAT SAY NOBODY HAS TO
REINVENT THE WHEEL. EVERYBODY
IS LOOKING OUT THERE WHAT IS
GOING ON SAYING WHY DON'T WE
JUST DO THIS. KAT MENTIONED
MENTORING. THAT IS REALLY
IMPORTANT. MAKES A HUGE
DIFFERENCE. I DON'T KNOW IF ANY
OF THE REST OF YOU HAD
MENTORING, KATHY I KNOW SASHA
HAS BUT I KNOW KAT YOU HAD
FOR YEARS THAT IT MAKES A
DIFFERENCE, IT IS NOT A COSTLY
PROGRAM TO SET UP. IT CAN BE
FIGURED OUT AND DONE WITHIN
EXISTING SYSTEMS OR EXISTING
FASD UNITED AFFILIATES TO SAY
THESE ARE THINGS THAT MAKE A
DIFFERENCE, THE CONTACT WITH
OTHERS BECAUSE THAT -- WHEN WE
TALKED ABOUT THIS THE
STEREOTYPING THAT BEGINS TO
CHANGE HOW THAT IS SEEN BY
PEOPLE WITH FASD BECAUSE THEY
NEED TO LOOK AT THIS DIFFERENTLY
AND SEE THEMSELVES AS
FUNCTIONING, COMPETENT
INDIVIDUALS. AND NOT AS PEOPLE
WHO ARE PROBLEMS. BECAUSE YOU
NEED -- THAT NEEDS TO CHANGE. I
KNOW THAT -- I THINK WE ARE
PROBABLY CLOSE TO TATIANA,
CORRECT ME IF WRONG, ABOUT READY
TO MOVE ON, BUT I SEE ANOTHER
THING THE ADDRESS BUT ONE OF THE
SENIOR DIAGNOSTIC POSITIONS IN
THE PROVINCE OF BRITISH
COLUMBIA, WHEN SHE DIAGNOSED
OLDER KIDS, TEENS AN ADULTS
TRACKS THE COMMENTS BECAUSE
THERE'S A WHOLE SESSION THEIR
DIAGNOSIS IS EXPLAINED WHAT IT
MEANS, WHAT IT DOESN'T MEAN. AND
THE MOST COMMON COMMENT FROM ALL
OF THE TEENS AND ADULTS WAS,
THIS SPEAKS TO WHAT I'M TALKING
ABOUT, YOU MEAN IT ISN'T ME? I'M
NOT BAD? I'M NOT STUPID? THOSE
WERE THE TWO MOST COMMON
COMMENTS. BECAUSE WITH --
WITHOUT EVER MEANING TO, THAT IS
WHAT THEY ARE INTERNALIZING
LARGE NUMBERS OF THEM WHO DON'T
GET SUPPORTS AND SERVICES. THEY
INTERNALIZE THEY ARE A PROBLEM.
THEY ARE BAD BAD. THEY ARE LESS
THAN. AND THAT NEEDS TO CHANGE,
YOU WANT TO TALK AGAIN CHANGING
THAT WHOLE DIALOGUE AND THAT IS
PREVENTION AND INTERVENTION
PIECE. HOW DOES SUPPORTS IN BC
FOR PEOPLE WITH FASD DIFFER FROM
OTHER PROVINCES IN CANADA? IN
OTHER WORDS IS IT PROVINCIAL
PROGRAMS OR FEDERAL SYSTEMS
MAKING THE DIFFERENCE? ANYONE
DONE COMPARATIVE POLICIES
RESEARCH ON FASD BETWEEN CANADA
AND THE U.S.? THE PROVINCES IN
CANADA SET UP THEIR OWN SYSTEMS.
THE FEDERAL GOVERNMENT ALLOCATES
FUNDS TO EACH PROVINCE THEY CAN
USE AS SEE FIT WITHIN ALL THE
DIFFERENT SYSTEMS. BUT THE
FEDERAL GOVERNMENT HAS ALSO SET
UP SOME PROGRAMS IF I CAN CALL
THEM THAT, WHERE IN FOR INSTANCE
FASD IS A RECOGNIZED DISABILITY
IN CANADA, SO THE FEDERAL
GOVERNMENT HAS WHAT ARE CALLED
DISABILITY TAX CREDITS, FASD
QUALIFIES FOR IT AUTOMATICALLY.
THEY HAVE REGISTERED DISABILITY
SAVINGS PLANS THAT ARE MANAGED
FEDERALLY. ANYBODY WITH FASD
QUALIFIES FOR ONE. IF ONE SHOULD
APPLY FOR THAT AND YOU ARE
APPROVED THE GOVERNMENT PUTS
$500 A YEAR INTO THAT ACCOUNT
FOR THAT PERSON WITH FASD. IF
THE FAMILY CAN PUT MONEY IN AS
WELL, THE GOVERNMENT MATCHES OR
DOUBLES THAT MONEY UP TO
$70,000. IT IS LOOKING AT FROM
MULTIPLE LEVELS ABOUT WHAT ARE
THE THINGS IN YOUR CASE STATES
CAN DO, LOCAL CAN DO, STATES CAN
DO, FEDERALLY CAN DO THAT CAN
MAKE A DIFFERENCE OVER TIME FOR
PEOPLE WITH FASD BECAUSE IT
ISN'T A ONE SOLUTION. THERE IS
MANY DIFFERENT THINGS THAT CAN
HAPPEN, WHEN YOU HAVE ALL THESE
LITTLE THINGS YOU SAY THAT'S A
SMALL PROGRAM HERE AND SMALL
PROGRAM HERE, YES BUT IF
EVERYBODY IS DOING THEM AND THEY
BEGIN TO COALESCE SO A MUCH
BIGGER THING, AS IN MANY PLACES
THE AUTISM HAS BEEN ABLE TO DO
SOME OF THIS, IF WE LOOK AT
THAT, IT MAKES A DIFFERENCE.
SORRY, I HAVEN'T SEEN A HAND UP
HERE IT IS NOT SHOWING UP ON MY
SCREEN.
>> TWO HANDS AND ALSO WANTED TO
TELL YES, WE NEED TO COME IN ON
TIME.
>> WE SHOULD BE OVER TIME THAT
IS WHAT I'M THINKING.
>> WOULD YOU LIKE TO MAKE YOUR
COMMENT?
>> SURE. I'M TRACY KING NICHD.
I'M SO APPRECIATIVE OF EVERYONE'S
COMMENTS BUT ONE THING I THINK
THAT REALLY STRUCK ME FIRST WITH
KATHY HOTELLING'S COMMENT HOW
BEING FROM A HIGH RESOURCE
SETTING REALLY MADE A DIFFERENCE
AND LISTENING TO YOU ALL TALK
ABOUT YOUR VERY STRONG SUPPORT
SYSTEMS, I GUESS SOMETHING THAT
I HAVE BEEN THINKING ABOUT IS
WHO IS NOT REPRESENTED ON THIS
PANEL AND WHO IS NOT REPRESENTED
IN THE SERVICES THAT YOU ALL ARE
ABLE TO ACCESS. I GUESS IT IS
NOT SO MUCH A QUESTION THAT
NEEDS A RESPONSE. I THINK IT IS
POSSIBLE THAT THE NEXT SESSION
ON FAMILY NAVIGATORS MIGHT A I
DRESS THIS BUT I'M ALSO STRUCK
THAT THIS PANEL, CERTAINLY
GUILTY OF THIS, NOT A
PARTICULARLY DIVERSE PANEL AND
SO I'M HOPEFUL THAT AS WE MOVE
FORWARD WE CAN THINK ABOUT THAT
AS WE TRY TO INCREASE OUR
OUTREACH TO THE FASD COMMUNITY.
>> CAN I SAY IN RESPONSE THAT
THAT SINCE YOU MENTIONED ME, THE
ISSUE THAT I HAVE HAD ON MY SIDE
IS TIME. THE ABILITY TO QUOTE
UNQUOTE RETIRE WAY BEFORE I
WANTED TO, AND THE FINANCIAL
MEANS TO DO THAT. BUT I HAD THE
TIME TO LOOK FOR ALL OF THESE
PROGRAMS. AND IT TOOK HOURS AND
HOURS AND HOURS. THAT'S WHY I
STARTED NCFASD INFORMED IS TO
SHARE THAT INFORMATION BECAUSE
PEOPLE DON'T HAVE THE PRIVILEGE
THAT I HAVE HAD OF TIME ALONE
AND I -- IT IS SO IMPORTANT.
THANK YOU.
>> THANK YOU. BILL.
>> TATIANA, I WANTED TO
ACKNOWLEDGE THAT THERE WERE
SEVERAL PUBLIC COMMENTS MADE IN
THE CHAT. THANKING THE PANELIST
FOR SHARING THEIR EXPERIENCES
BOTH CHALLENGES AND STRENGTHSES.
AND MANY OF THE STORIES ECHOED
SOME OF THE STORIES WERE HEARD
THIS AFTERNOON. BY THE
PANELISTS, NEED FOR SERVICES
SUPPORT, BETTER UNDERSTANDING OF
THE CONDITION. AND SO I DO WANT
TO LET THE PUBLIC KNOW WE WILL
BE SHARING THOSE STORIES
OFFLINE. WITH THE PANELISTS
WITH OUR AGENCY MEMBERS.
>> BILL, I WANT TO SAY SOMETHING
TO TRACY. BECAUSE SOMETHING I
HAVEN'T MENTIONED YOUR POINT IS
REALLY WELL TAKEN BUT THE
PROVINCE OF BC ALSO HAS A KEY
WORKER PROGRAM, COUPLE OF OTHER
PROVINCES DO AS WELL SPECIFIC
SERVICE DIRECT SERVICE FOR
FAMILIES WITH FASD SERVING A
GREAT MANY DISADVANTAGED
FAMILIES AND THAT'S AN ISSUE
BECAUSE CHILDREN IN FOSTER CARE,
CHILDREN IN ISOLATED COMMUNITIES
CHILDREN WHO COME FROM FAMILIES
THAT STRUGGLE WITH THOSE
DISABLES NEVER GET HEARD. BUT TO
BE PUBLICLY HEARD PUTS THEM AT
RISK IN MANY PLACES. BY WHAT WE
HAVE DONE WITH THE PROVINCIAL --
KEY WORKER PROGRAM IS TRY IN BC
TRY TO BRING THOSE FAMILIES IN.
AND THE REPRESENTATIVE FOR
CHILDREN AND YOUTH IN BC
PROVINCIAL CHILD ADVOCATE BUT
EX-OFFICIO GOVERNMENT SO HAS
VERY SIGNIFICANT POWER HERE,
JUST DID A REPORT A YEAR AGO
CALLED EXCLUDED ABOUT CHILDREN
IN THE CARE SYSTEM WITH FASD AND
HOW THEIR VOICES AREN'T HEARD.
AND WHAT NEED TO CHANGE. IT'S
BEEN MANDATING CHANGE WITHIN
GOVERNMENT TO BRING THEM IN AND
TO HAVE THEM BETTER SERVED AND
UNDERSTOOD AND BROUGHT SOME OF
THEM TO A MEETING WITH
GOVERNMENT A YEAR AGO IN
VICTORIA TO TALK DIRECTLY. SO
YOUR POINT IS THIS IS SO
IMPORTANT.
>> THANK YOU SO MUCH. THANK YOU
AND ALL PRESENTERS. THANK YOU SO
MUCH FOR YOUR WONDERFUL
PRESENTATIONS. YOU GIVE US VERY
IMPORTANT INFORMATION. WE DO
HAVE ALL CONTACTS AND YOU HAVE
OUR CONTACTS. I HOPE THIS
DISCUSSION CAN CONTINUE BY EMAIL
AND WE WILL BE IN TOUCH AND EACH
CAN COMMUNICATE AND CONTACT YOU
AND YOU FEEL FREE TO CONTACT US
WE ALSO HAVE MORE TIME FOR
DISCUSSION LATER AFTER THE BREAK
IN AFTERNOON SESSION. SAVE YOUR
QUESTIONS, WE WILL HAVE
ADDITIONAL TIME. AS KAT SAID IT
WOULDN'T BE HARD TO DO, YOU GIVE
VERY IMPORTANT INFORMATION.
THANK YOU, PLEASE SAVE YOUR
QUESTIONS. WE WILL BE BACK IN
FOUR MINUTES. 2:30 WE WILL
CONTINUE NEXT SESSION.
>>THANK YOU SO
MUCH TO ALL PANELS SPEAKERS WE
HAD EXCELLENT PANEL, IT WAS
ACTUALLY VERY DIVERSE PANEL. WE
KNOW THIS BUT WE ALSO KNOW THAT
THERE ARE MANY MORE PEOPLE WITH
FASD AND FAMILIES WHO HAVEN'T
BEEN REPRESENTED. AND MANY MORE
WE CANNOT NECESSARILY REACH. SO
WE WILL CONTINUE THIS WORK. WITH
THIS PANEL, PART TWO OF OUR
PANEL WE ARE DELIGHTED TO HAVE
SPECIAL GUESTINGS WHO WILL TELL
US ABOUT A NEW PROGRAM DEVELOPED
BY FASD UNITED. SPECIFICALLY TO
HELP FAMILIES WITH FASD WITH
SUPPORTS AND SERVICES THEY NEED.
THE PROGRAM IS CALLED FAMILY
NAVIGATOR, IT WAS DEVELOPED
ABOUT ONE YEAR AGO WITH SUPPORT
FROM A GRANT FROM CDC. DR.
ELIZABETH CDC AGREED TO MODERATE
THIS PANEL, SHE IS A CDC
COMMUNITY REPRESENTATIVE TO
ICCFASD. HER BIOSKETCH IS
AVAILABLE ONLINE, I DON'T NEED
TO TELL MORE BECAUSE SHE HAS
EXPERIENCES AND WE ARE HAPPY SHE
AGREED TO MODERATE THIS PANEL.
SHE WILL INTRODUCE PANEL
SPEAKERS.
>> THANK YOU, TATIANA, I'M
PLEASED TO INTRODUCE YOU ARE OUR
GUESTS FROM FASD UNITED. MANY
OF YOU HAVE PROBABLY KNOWN AND
WORKED WITH FASD UNITED OVER THE
YEARS, PREVIOUSLY KNOWN AS THE
NATIONAL ORGANIZATION ON FETAL
ALCOHOL SYNDROME OR NOFAS. WHEN
WE THINK OF ONE MAIN VOICE IN
THE COUNTRY ON THE TOPIC OF
FETAL ALCOHOL SPECTRUM DISORDERS
AND ALCOHOL USE DURING PREGNANCY
WE THINK ABOUT FASD UNITED. ONE
RESOURCE THAT THEY HAD FOR MANY
YEARS IS NATIONAL STATE BY STATE
RESOURCE DIRECTORY, WHERE
CAN GO LOOK UP RESOURCES IN
THEIR AREA OR STATE LOOKING FOR
DIAGNOSIS OF A CONDITION ALONG
THE FASD CONTINUUM OR TREATMENT
FORVINGS AND FAMILIES LIVE
FASDS, PARENTS AND FAMILY
SUPPORT GROUPS, PREVENTION
PROGRAMS, TREATMENT FOR WOMEN,
ET CETERA. BUT MORE RECENTLY AS
TATIANA INDICATED FASD UNITED
HAS GREATLY EXPANDED TO BE ABLE
TO PROVIDE INDIVIDUALS LIVING
WITH FASD, FAMILY MEMBERS
SUPPORTERS WITH EXPERTS, ONE ON
ONE CONFIDENTIAL SUPPORT AND
REFERRALS KNOWN AS THE FAMILY
NAVIGATOR PROGRAM. SO OUR GUESTS
FROM FASD UNITED ARE GOING TO
TELL YOU MUCH MORE. WITH US
TODAY ARE TOM DONALDSON, CHIEF
EXECUTIVE OFFICER OF FASD
UNITED. HEATHER FRENCH WHO LEADS
THE FAMILY NAVIGATOR PROGRAM.
AND JENN WISDAHL, CHIEF
OPERATING OFFICER. ALL ARE ON
THE ICCFASD WEBSITE. WE WILL
NOW SEE A PRESENTATION BY FASD
UNITED ABOUT THE FAMILY
NAVIGATOR PROGRAM WHEN TIME FOR
DISCUSSION. THANK YOU.
>> THANK YOU VERY MUCH FOR
HAVING US HERE. YEN JENN
WISDAHL, CHIEF OPERATING OFFICER
OF FASD UNITED. I'M JOIND BY MY
COLLEAGUE HEATHER FRENCH, DIRECT
TO OF NAVIGATION AND RESOURCES,
AND LEADERS DURING THE.
DISCUSSION BY TOM DONALDSON CEO
AND ELIZABETH DANG OUR PARTNER
AT THE CDC. ONE OF THE
CHALLENGES AROUND NAVIGATING AN
FASD DIAGNOSIS IS THAT THE
PREDOMINANT FOCUS OF FIELD FOR
MANY YEARS IS ON RESEARCH AND
PREVENTION. BOTH HIGHLY
IMPORTANT BUT LEAVING A GAP FOR
THE AS MANY AS 1 IN 20 AMERICANS
WITH FASD LOOKING FOR SERVICES
AND SUPPORT. GREAT PROGRAMS AND
PRACTICES EXIST, THEY ARE FOUGHT
CONSISTENTLY AVAILABLE OR
WIDESPREAD. THINGS LIKE ACCESS
TO DIAGNOSIS, PARTICULARLY FOR
ADULTS OR ACCESS TO FASD
INFORMED MENTAL HEALTH SUPPORT
ARE FAR OUTSTRIPPED BY NEED.
FAMILIES FACE AN UPHILL JOURNEY
WITHOUT SYSTEMS OF CARE PUT IN
PLACE TO SUPPORT PEOPLE WITH
DISABILITY RECOGNIZING FASD
ADVOCATES ABILITY. INFORMATION
WHEN AVAILABLE IS OFTEN BASED ON
PILOT PROGRAMS OR RESEARCH
STUDIES COMPLETED AND THEN LEFT
WITHOUT UPDATES. FAMILIES HAVE
BECOME DETECTIVES OUT OF
NECESSITY, SPENDING HOURS
SEARCHING FOR SUPPORTS NEAR THEM
WHEN THEY OFTEN DON'T EXIST. AND
FOR THOSE NEW TO THE DIAGNOSIS
OR WITHOUT ABILITY TO DEVOTE
TIME TO RESEARCH, THIS BECOMES A
CHALLENGE. TO RESPOND TO THIS
NEED, OUR FAMILY NAVIGATION
PROGRAM BEGAN IN JANUARY 2022 AS
AN ACTIVE RESOURCE DIRECTORY.
AND MECHANISM FOR PROVIDING PEER
SUPPORT. THE MOMENT A RESOURCE
DIRECTORY IS PUBLISHED IT
BECOMES OUT OF DATE RAPIDLY. WE
WANT ODD A SYSTEM THAT PROVIDED
DYNAMIC SUPPORT AN TWO WAY
FEEDBACK ENSURING RESOURCES
PROVIDED WERE UP TO DATE AND IN
LINE WITH THE MOST CURRENT
RESEARCH. MOST IMPORTANTLY WE
WANTED FAMILIES AN PEOPLE
DIAGNOSED WITH FASD TO HAVE
PLACE TO GO TO FIND HELP AND
SUPPORT. THIS PUBLIC PRIVATE
PARTNERSHIP BETWEEN FASD UNITED,
THE CDC AND PROVIDES -- NABCA
PROVIDES NATIONWIDE ONE TO ONE
INDIVIDUALIZED REFERRALS TO
RESOURCES AN INFORMATION ON FASD
AND PRE-NATAL SUBSTANCE EXPOSURE
AS WELL AS PEER SUPPORT AND
CONNECTIVITY BETWEEN CLINICAL
AND NON-CLINICAL RESOURCES. AT
NO CHARGE AND WITH NO REFERRAL
NEEDED OUR NAVIGATORS ARE
AVAILABLE BY PHONE, EMAIL,
WEBSITE OR TEXT, MON THROUGH
FRIDAY FROM 9 A.M. TO 10 P.M.
SINCE ITS LAUNCH THE VOLUME MORE
THAN TRIPLED. WITH MARCH 2023
CONTINUING THAT TRAJECTORY
WITH HIGHEST VOLUMES OF
INQUIRIES RESPONDED TO. NOTICE
THROUGHOUT THE PRESENTATION WE
PROVIDED REAL NON-IDENTIFYING
EXAMPLES OF TYPES OF
COMMUNICATION RECEIVED AND SET
OUT BY OUR FAMILY NAVIGATION
TEAM. THIS PROGRAM IS INTENDED
LOW BARRIER WITH EASE OF ACCESS
FOR THE USER. RESOURCES ARE PUT
IN WRITING BUT CAN ALSO BE
EXPLAINED TO THE END USER BE
PHONE OR TEXT. THERE IS NO LIMIT
TO THE NUMBER OF TIMES SOMEONE
CAN CONTACT OUR NAVIGATOR
PROGRAM. IN FACT ON AVERAGE,
NAVIGATION USER CONTACTS US 2.68
TIMES WITH HIGH OF 14 INQUIRIES
FROM ONE PERSON. USERS HAVE
ABILITY TO CONTINUE ANNUITY OF
CARE IS ESTABLISH -- CONTINUITY
OF CARE IS ESTABLISHED. ALL
STAFF MEMBERS ON THE TEAM HAVE
LIVE EXPERIENCE WITH FASD AND
NAVIGATING THROUGH SYSTEMS OF
CARE NOT ALWAYS EASY TO ACCESS.
WE WILL SOON HEAR AN EXAMPLE OF
INQUIRY RECEIVED BY NAVIGATORS.
SOME OF THE CHALLENGES AND
RESOURCES ONLINE IS THAT THEY
ARE OFTEN HARD TO LOCATE OR
CONTAIN OUT OF DATE INACCURATE
INFORMATION. OUR NAVIGATORS DO
THE VERGE FOR THE USER AND DO
THEIR BEST TO VET THE
INFORMATION BEING GIVEN SO THE
END USER IS LEFT WITH USABLE
RESOURCES, AND UP TO DATE
INFORMATION. AS FASD SPECIFIC
RESOURCES CAN BE VERY HARD TO
LOCATE, OUR NAVIGATORS BECOME
OUT OF THE BOX DETECTIVES TO
LOOK FOR INFORMATION PERHAPS IN
OTHER AREAS THAT MAYBE
ACCESSIBLE IN LINE TO THE END
USER SUCH AS SUPPORT GROUPS OR
TRAINING. PEER SUPPORT IS
ANOTHER MAJOR COMPONENT OF OUR
USER EXPERIENCE WHEN IT FELT THE
FIRST FILE I INTERACTED WITH
ANOTHER PARENT WITH FASD IT WAS
POWERFUL AND I A FIRMING. THE
FIRST TIME I FELT NOT ALONE. IN
MANY INSTANCES, THIS IS THE
FIRST CONNECTION FAMILY MEMBERS
HAVE TO SOMEONE ELSE WITHOUT
LIVING EXPERIENCE. WHEN WE FIRST
BEGAN THE FAMILY NAVIGATOR
PROGRAM WE HAD NO IDEA HOW
POPULAR IT WOULD BEOR WOULD
BECOME AND IN FACT LET OUR FIRST
NAVIGATOR HEATHER KNOW SHE MAY
BE WORKING LESS THAN EIGHT HOURS
A WEEK. WE WERE VERY, VERY
WRONG. WE WANTED TO ENSURE
EVERY INQUIRY RECEIVED A
RESPONSE EVEN IF THE INFORMATION
DID NOT EXIST. WE KEPT TRACK OF
THE NEEDS, WHO WAS ASKING AND
WHERE GAPS WHERE. USING A
TICKETED BASED SYSTEM WE CAN
ALSO ENSURE CONTINUITY OF CARE
AND THAT FREQUENT USER ARE
RECEIVING CONSISTENT AND
RELEVANT INFORMATION. BECAUSE WE
TRACK DATA ON WHO IS CALLING
FROM WHERE AND FOR WHAT, WE ARE
ABLE TO VISUALIZE TRENDS AND
BEGINNING TO HAVE CONCRETE DATA
ON WHERE GAPS EXIST. IN THE
BACKGROUND ARE GROWING TEAM OF
NAVIGATORS ARE ALSO DOING
OUTREACH TO THE COMMUNITY
LOOKING ACTIVELY LOOKING FOR
RESOURCES AND THEN CONNECTING
CLINICAL AND NON-CLINICAL
ORGANIZATIONS THAT THEY FIND TO
INFORMATION ON FASD. FOR
EXAMPLE, ONE OF THE BIGGEST
PIECES OF INFORMATION WE SENT
OUT IN MARCH OF 2020 TO
ORGANIZATIONS THAT ARE
NAVIGATORS CONNECTED WITH, WAS
THE CURRENT TRAINING FOR
PROVIDERS BY THE AAP ONE OF OUR
PARTNERS THROUGH CDC. AS FAMILY
NAVIGATION HAS GROWN AND BECOME
MORE BROADLY UTILIZED WE SEE THE
NEED FOR ADDITIONAL DATA
COLLECTION AND DIFFERENTIATION.
WE HAVE SEEN THE NEED TO CAPTURE
ADDITIONAL DATA AND REFINE WHAT
DATA WE ARE CAPTURING. HERE TO
SHARE YOU OUR FINDINGS FROM THE
FIRST YEAR 2022 IS MY COLLEAGUE
AND ORIGINAL FAMILY NAVIGATOR,
HEATHER FRENCH.
>> I ALOK WITH THREE OTHERS MAKE
UP THE FAMILY NAVIGATION TEAM AT
FASD UNITED. LAST YEAR WE
RECEIVED 474 INQUIRIES AND FIRST
QUARTER OF THIS YEAR ALOPE, WE
HAVE ALREADY RECEIVED 233 AS
ORGANIZES AND GROUPS BECOME MORE
AWARE OF OUR SERVICE, AS
'RELIABLE AVENUE FOR RESOURCES,
WE HAVE SEEN A DRAMATIC INCREASE
IN REQUEST FOR SUPPORT. OUR
WEBSITE FORM IS UTILIZED WAY OF
REQUESTING ASSISTANCE FROM OUR
NAVIGATORS. HOWEVER, WE HAVE
SEEN INCREASE IN PHONE CALLS
SINCE WE HAVE EXPANDED THE
PROGRAM TO HAVE PHOTO
INVESTIGATABLE TO 10 P.M.
EASTERN AND CONSIDERING OPTION
TO INCREASE ACCESS BY CHAT OR
TEXT AS WE GET REQUESTS AS
RESPOND BY TEXT. THE MAJORITY OF
REQUESTS COME FROM CAREGIVERS OF
INDIVIDUALS WITH FASD.
PROFESSIONALS THAT ARE REACH OUT
INCLUDE MEDICAL MENTAL HEALTH
PROVIDERS, THERAPISTS TEACHERS,
CHILD WELFARE WORKERS AN CHILD
CARE PROVIDERS. INQUIRIES
FOLLOW POPULATION TRENDS.
BECAUSE SOME STATES ARE LIMITED
OR OUT OF DATE OFTEN WE ARE
LOOKING FOR NATIONAL RESOURCES
RESOURCES FROM OTHER STATES WHEN
INQUIRIES ARRIVE. WE ARE PROUD
TO ANNOUNCE WE HAVE NOW PROVIDED
SUPPORT TO INDIVIDUALS IN ALL 50
STATES. WE SEE WHAT IS
REQUESTED BY INDIVIDUALS WHEN
THEY CONTACT US. STATE RESOURCES
INCLUDE MEDICAID WAIVER
PROGRAMS, VOCATIONAL
REHABILITATION. WRAP AROUND
SERVICES AND LOCAL PROGRAMS AND
INFORMATION ON FASD. STARTING IN
2023 STATE RESOURCE CATEGORY HAS
BEEN BROKEN DOWN SO WE CAN
DIFFERENTIATE WHAT IS BEING
REQUESTED. MENTAL HEALTH THERAPY
AND LEGAL COUNSEL RESOURCES ARE
HARD TO FIND THAT ARE FASD
INFORMED. HELPING CAREGIVERS
ADVOCATE FOR THEIR LOVED ONE
WITH THE SCHOOL SYSTEM,
ESPECIALLY OLDER STUDENTS AND
THOSE TRANSITIONING TO ADULTHOOD
CAN ALSO BE A CHALLENGE FOR OUR
NAVIGATORS. THE CONNECTION TO
RESOURCES THESES REACH OUT TO US
MORE BUT WHAT THEY UNDERSTAND IS
WHAT MEANS TO MOST TO THEM AS
THEY FEEL ALONE AN
MISUNDERSTOOD.
>> AS HEATHER ALLUDE TO OUR
FUTURE PLANS FOR THE FAMILY
NAVIGATION PROGRAM INCLUDES
INCREASED FOCUS ON DATA WE
COLLECT, AS WELL AS FOCUS ON THE
INFORMATION THAT WE ARE SENDING
OUT TO CLINICAL AND NON-CLINICAL
ORGANIZES THAT WE COME INTO
CONTACT WITH IN SEARCHING FOR
RESOURCES AND SUPPORT FOR THE
FAMILIES AND INDIVIDUALS THAT WE
SERVE THIS IS A CONSTANT PROCESS
ASSESSING AND REASSESSING HOW WE
ARE DOING AND WHAT WE ARE DOING
WITH THE PROGRAM. THE DATA HELPS
VISUALIZE CONTINUUM OF CARE FOR
PEOPLE WITH FASD AND BEGINS TO
ADDRESS THE GAPS. STARTING IN
JANUARY OF 2023 WE BEGAN
COLLECTING DATA ON WHICH
RESOURCES ARE REQUESTED VERSUS
WHICH ARE ACTUALLY AVAILABLE. WE
BEGUN QUANTIFYING AMOUNT OF
RESOURCES AVAILABLE BY STATES
AND NATIONALLY AND HOPE TO ROLL
OUT STATE DATA SHEETS OR REPORT
CARDS USING THIS INFORMATION IN
LATE 2023. IN LOOKING AT
RESOURCES, WE ARE ALSO FINDING
AREAS WHERE FASD OR PRE-NATAL
ALCOHOL EXPOSURE MIGHT BE
IDENTIFIED SUCH AS THROUGH CAPTA
OR WIC AND WHERE FAMILY
NAVIGATION PROGRAMS COULD BE OF
SUPPORT. ADDITIONALLY, THIS
INFORMATION CAN BE USED TO
INFORM POLICY NEEDS, DIRECT
RESOURCES AND INCREASE
PROGRAMMING WHERE THERE MAY NOT
BE AVAILABLE -- ADEQUATE
AVAILABILITY. THROUGH THE FAMILY
NAVIGATION PROGRAM, AS A CYCLE
OF DATA COLLECTION SUPPORT,
DOCUMENTATION, COMMUNICATION IN
THE FASD COMMUNITY AND OUT TO
THE FIELD SO RESOURCES CAN BE
MADE AVAILABLE WHERE THEY ARE
NEEDED MOST. FROM THIS
COMMUNITY BASED DATA AND SUPPORT
INFORMS FUTURE WORK BUT MOST
IMPORTANTLY OUR NAVIGATORS CAN
PROVIDE HOPE INCITE AND
COMMUNITY TO PEOPLE UTILIZING
THE FAMILY NAVIGATOR PROGRAM.
OUR PLANS FOR QUARTERS 3 AND 4,
2023 INCLUDE THE IMPLEMENTATION
OF MORE ENHANCED FEEDBACK
MECHANISMS. TO MEASURE NOT JUST
IMPACT OF THE WORK WE ARE DOING
THE INFORMATION WE ARE SENDING
OUT,/HOW IMPORTANT THE RESOURCES
WE FIND. THIS INCLUDES BOTH
VARIES COMPLETED BY EMAIL OR
TEXT BUT ALSO INTERVIEWS WITH
END USERS AND LOOK AT SPACING
THOSE OUT NOT IMMEDIATELY
FOLLOWING THE NAVIGATION
REQUEST, BUT THREE AND SIX
MONTHS DOWN THE ROAD TO SEE HOW
THAT INFORMATION WAS IMPLEMENTED
AND USED IN THE CARE OF THE
PERSON WITH FASD. CURRENTLY
FEEDBACK WE RECEIVE, ALL
FEEDBACK WE DO RECEIVE TO
NAVIGATOR PROGRAM IS COLLECTED
AND REVIEWED. AND SO WE
PROVIDED A WORD CLOUD HERE BASED
ON ALL 2022 FEEDBACK RECEIVED BY
OUR FAMILY NAVIGATORS FROM END
USERS REQUESTERS. OUR
NAVIGATORS REALLY ARE HERE TO
HELP. I THINK THAT IS SHOWN IN
THE FEEDBACK WE RECEIVED.
TAKING TIME, SUPPORT, HELPFUL
INFORMATION, THESE ARE ALL
CORNER STONES OF WHAT WE ARE
TRYING TO PROVIDE WITH THIS
PROGRAM. OUR NAVIGATORS HEATHER,
LAURA -- NAVIGATORS HEATHER
LAURA, KRISTIN AND THE OTHER
LAURA, ARE HIGHLY DEDICATED
INDIVIDUALS WHO HAVE A VERY
CHALLENGING ROLE. AND THEY DO IT
WITH A SMILE ON THEIR FACE AND A
HEART FOR SUPPORT AND SERVICE.
TO ACCESS OUR FAMILY NAVIGATION
SERVICE YOU CAN DIRECT
INDIVIDUALS TO OUR WEBSITE UNDER
FAMILY NAVIGATOR OR THEY CAN
CALL OUR 800 LINE BETWEEN 9 A.M.
AND 10 P.M., REACH A LIVE
PERSON, AND CONNECT TO OUR
NAVIGATOR PROGRAM. WE ENCOURAGE
YOU SHARE THIS INFORMATION
THROUGHOUT YOUR NETWORKS. WE
HAVE INFORMATION THAT WE CAN
EMAIL OR MAIL OUT TO YOU TO
SHARE WITHIN YOUR NETWORKS. SO
THAT WHEN A DIAGNOSIS IS GIVEN
OR WHEN FASD IS SUSPECTED, THERE
IS A PLACE FOR PEOPLE TO TURN TO
TO RECEIVE GUIDANCE OR SUPPORT
ON WHAT TO DO NEXT. NEXT. WE ARR
TO HELP AND I THANK YOU FOR YOUR
TIME TODAY.
>> THANK YOU SO MUCH TO JENN AND
HEATHER, AS THEY SAID AT THE
BEGINNING OF THE PRESENTATION,
TOM DONALDSON IS ALSO HERE FOR
THE DISCUSSION PORTION SO WE ARE
NOW GOING TO SEE IF ANYONE HAS
ANY QUESTIONS. I JUST WANTED TO
REITERATE WHAT A GREAT SERVICE
THIS IS, FASD UNITED OFFERS AND
TO BE AVAILABLE SO MANY HOURS OF
THE DAY, IT GOES BACK TO THE
COMMENT I THINK THAT KATHY
HOTELLING MADE EARLIER, IT TAKES
HOURS TO RESEARCH THIS
INFORMATION AND I KNOW SOMETIMES
CAN LEAD DOWN RABBIT HOLES THAT
PROVE UNHELPFUL SO THE FAMILY
NAVIGATORS ARE HERE TO DO THAT
WORK FOR YOU. I ALSO THINK THE
LEVEL AND AMOUNT OF DATA BEING
COLLECTED IS REALLY HELPFUL TO
ELIMINATE GAPS THAT ARE OUT
THERE. TO HELP INFORM NEW
RESOURCES THAT CAN BE HELPFUL TO
FAMILIES AS WELL SUCH AS THE
STATE DATA SHEET. THAT WERE
MENTIONED. WE DO HAVE ONE
QUESTION FROM EARLIER THAT SEEMS
RELEVANT. BUT WE WONDERED IF
FROM THE FAMILY NAVIGATOR
PROGRAM DO YOU HAVE A SENSE HOW
MUCH REQUESTS YOU GET FROM GRAND
PARENTS WHO ARE RAISING
GRANDCHILDREN AND POSSIBLY ALSO
LOOKING TO CONNECT WITH OTHER
GRAND PARENTS?
>> I'M GOING TO APOLOGIZE HERE
BECAUSE MY VIDEO IS NOT WORKING WE
DON'T TRACK SPECIFICALLY GRAND
PARENTS BUT ANECDOTALLY WE DO
GET A NUMBER OF GRAND PARENTS
REQUESTING SUPPORT. AS FOR
RESOURCE, I DON'T KNOW OF ANY
GRANDPARENT SPECIFIC RESOURCES
FOR FASD SUCH AS GRANDPARENT
SPECIFIC SUPPORT GROUPS AT THIS
POINT BUT THE MORE PEOPLE ASK
FOR THINGS, THE MORE WE CAN KEEP
TRACK. THIS IS WHERE KEEP TRACK
OF THOSE GAPS IS REALLY HELPFUL.
IF YOU DON'T ASK WE DON'T KNOW
IT'S NEEDED. SO A HELPFUL
INQUIRY TO PUT INTO 1/2 GATORS
AND LET THEM SEARCH TO SEE WHAT
THEY CAN -- NAVIGATORS SO LET
THEM SEARCH TO SEE WHAT THEY CAN
FIND TOO.
>> I WANTED TO ASK THOSE WHO ARE
HERE TODAY, IF ANYONE WANTED TO
RAISE THEIR HAND OR LET US KNOW
BUT BASED ON THE TYPE OF DATA
SHARED, FASD UNITED IS
COLLECTING, IS THERE ANYTHING
ELSE THAT YOU THINK WOULD BE
HELPFUL THAT YOU MAYBE DIDN'T
SEE REFLECTED BUT THAT YOU THINK
WOULD HELP INFORM THE FIELD AND
BE HELPFUL TO FAMILY? TRISH, YOU
HAVE YOUR HAND UP?
>> THANKS. I HAVE A QUESTION,
THIS WAS IN MY MIND ANYWAY AND
YOU PROVIDED A SEGWAY TO ASK IT.
I'M CURIOUS KATHY MITCHELL SPOKE
TO DIFFICULTY IN FINDING SOMEONE
IN THE DC AREA TO GET A
DIAGNOSIS. SO I WAS CURIOUS IF
YOU ARE COLLECTING DATA AND IF
YOU HAVE A SENSE, ARE PEOPLE
GETTING DEFINITIVE DIAGNOSIS OR
KIND OF THIS COULD BE AND THEN
THEY ARE LOOKING FOR MORE
INFORMATION WHERE TO TURN? SO
JUST CURIOUS HOW PEOPLE ARE
GETTING EITHER DIAGNOSIS OR JUST
A SUGGESTION.
>> ONE OF THE THINGS WE DO IS
CONNECT THEM WITH WHAT
DIAGNOSTIC RESOURCES WE KNOW ARE
AVAILABLE. ONE AREA NOW WE ARE
TRACKING IS IS DIAGNOSTIC
RESOURCE OVER AN HOUR AWAY, IF
THE IS THE DIAGNOSTIC RESOURCE
OUT OF STATE OR SIMPLY NOT
AVAILABLE? OFTEN WE ARE HAVING
TO GO BACK PLEASE CORRECT ME IF
I SPEAK OUT OF TURN BUT WE MAY
HAVE TO GO BACK TO THE FAMILY
AND SAY I'M SORRY, THERE IS NOT
SOMETHING AVAILABLE IN YOUR
AREA. HERE ARE OTHER AVENUES YOU
CAN PURSUE. UNFORT FORTUNATELY
THAT IS WHERE WE ARE RIGHT NOW
WITH DIAGNOSES. THE OTHER THING
DUO AS WE REACH OUT TO
PRACTICERS IF WE DIAGNOSE WE ARE
PROVIDING THEM WITH RESOURCES
SUCH AS THE AAP TRAININGS AND
THE CDC TRAININGS, WE ARE
PROVIDING THEM WITH INFORMATION
TO HOPEFULLY WET THEIR INTEREST
AND LET THEM KNOW AND MAKE THEM
AWARE OF THE NEED THAT IS OUT
THERE IN THE COMMUNITY. FOR THIS
PARTICULAR DIAGNOSTIC RESOURCE.
>> SHARON YOU HAVE YOUR HAND UP
YOU ARE ON MUTE, SHARON.
>> SORRY. I WANT TO KNOW IF THE
NAVIGATOR PROGRAM IS COLLECTING
INFORMATION ON THE RACEETH IN
THIS THE OF PEOPLE WHO ARE
SEEKING THESE SERVICES OR THIS
INFORMATION?
>> NOT AT THIS TIME BUT IT COULD
BE SOMETHING WE CAN DO IN THE
FUTURE. VIABLE OPTION.
>> THAT WOULD BE SOMETHING OF A
LOT OF INTEREST TO THE CHILDR
CHILDREN'S BUREAU. I STARTED TO
TALK ABOUT THIS EARLIER BUT A
GREAT CONCERN AT CHILDREN'S
BUREAU THAT CHILDREN OF COLOR
ARE OVERREPRESENTED IN FASTER
CARE. AND -- FOSTER CARE. THERE
IS A LOT OF TALK ABOUT USING THE
TERM OVERSURVEILLANCE, AND SO
PEOPLE ARE TALKING AT THE
CHILDREN'S BUREAU ABOUT
OVERSURVEILLING CHILDREN OF
COLOR OR FAMILIES OF COLOR AND
POSSIBLY BRINGING THAT'S WHY
MAYBE MORE ARE COMING TO FOSTER
CARE. HOWEVER, I AM ALSO
CONCERNED THAT WHAT WE ARE DOING
IS WE ARE IN DANGER OF
SYSTEMATICALLY NOT PROVIDING THE
SERVICES THAT THOSE FAMILIES
NEED. SO THAT IS A DANGER OF
TRYING TO BE FAIR, SOMETIMES
WHEN YOU ARE TRYING TO BE FAIR
YOU CAN MAKE IT BOOM RANGE AND
IT IS DOING THE OPPOSITE WHAT
YOUR INTENTION IS. WE DON'T WANT
TO SCOOP THEM UP AND BRING THEM
TO FOSTER CARE BUT WE DO WANT TO
PROVIDE SERVICES FOR BOTH
MINORITIES AND WHITE FAMILIES,
SO I AM CONCERNED ABOUT THAT AND
I THINK THIS WOULD BE A GREAT
INTEREST TO THE CHILDREN'S
BUREAU TO KNOW WHO ARE THE
PEOPLE WHO ARE CALLING AND
ASKING FOR THE INFORMATION.
>> I THINK ALONG THOSE SAME
LINES WE HAVE IMPLEMENTED A
TRACKING MECHANISM FOR THE CHILD
CURRENTLY OR THE PERSON BECAUSE
WE GET CALL ACROSS THE SPECTRUM
FROM GERIATRIC TO PEDIATRIC AND
ALL STAGES IN BETWEEN. WE ARE
TRACKING WHO IS CURRENTLY
INVOLVED IN THE CHILD WELFARE
SYSTEM. SO THAT IS SOME DATA IN
THE FUTURE WE WILL BE ABLE TO
PROVIDE TO YOU.
>> THANK YOU FOR THAT POINT
BECAUSE IT GIVES THOUGHT ABOUT
WHAT MORE INFORMATION TO
COLLECT. BACK TO TRISH YOUR
POINT ABOUT THE KNOWLEDGE WE CAN
GAIN FROM THOSE THAT WE REFER.
SOME OF THE FOLKS WE REFER TO
FOR DIAGNOSIS ARE WITHIN THE
FASD UNITED AFFILIATE NETWORK.
SO WE DO HAVE A PARTNERSHIP WITH
THEM OR IN SOME INSTANCES THEY
ARE MEMBERS OF THE CHAMPIONS
NETWORK THROUGH AAP OR ACOG.
THIS IS SOMETHING THAT RIGHT NOW
WE ARE TALKING ABOUT AS WE LOOK
AT OUR EVALUATION FOR THE
PROJECT, HOW TO CAPTURE NOT JUST
THE ANECDOTES BUT REAL DATA ON
OUTCOMES FOR INDIVIDUALS WHO GET
DIAGNOSIS. THAT IS QUITE OFTEN
THE JUST THE STARTING POINT FOR
PEOPLE. BECAUSE SOME PEOPLE,
AGAIN JENN AND HEATHER HAVE THE
DATA WHETHER PEOPLE COMING TO US
LOOKING FOR THE DIAGNOSIS
BECAUSE THEY HAVE JUST BECOME
AWARE OR SUSPECTED FASD OR QUITE
OFTEN THEY HAVE JUST RECEIVED
THE DIAGNOSIS FOR A LOVED ONE.
SO IN ALL STAGES THEY ARE
CLIENTS WE ARE HOPING TO SERVE.
>> QUESTION WE DID RECEIVE FROM
ORCID FASD SERVICES I BELIEVE IS
AN FASD UNITED AFFILIATE. THANKS
FOR THIS WONDERFUL PROGRAM, WHEN
MIGHT WE BE ABLE TO SEE A REPORT
CARD THAT SHOWS RESOURCES WITHIN
SPECIFIC SERVICE CATEGORIES IN
EACH STATE?
>> WE ARE WORKING ON STATE
REPORT CARDS CURRENTLY. WE HOPE
TO HAVE THOSE OUT THIRD OR FIRST
QUARTER OF 2023. -- OR FOURTH
QUARTER, 2023. THE STATE REPORT
CARDS WOULD BE LOOKING AT SOME
JUST SOME GENERAL CATEGORIES.
ARE THERE DIAGNOSTIC RESOURCES
AVAILABLE IN THAT STATE. WHAT
IS CAPACITY OF THOSE RESOURCES,
MANY PLACES THAT DO DIAGNOSES
ARE A MULTI-DISCIPLINARY CLINIC
THAT MAY HAVE ONLY ONE CLINIC
DAY PER WEEK OR ONE PER MONTH
THEY DIAGNOSE. AND HOW THAT
COMPARES TO BIRTHRATE OF IN THAT
STATE. IS THERE ADEQUATE
DIAGNOSTIC RESOURCES TO KEEP UP
WITH THE BIRTHS IN THE STATE? IS
FASD RECOGNIZED IN SPECIAL
EDUCATION IN THAT STATE? DO
PEOPLE WITH FASD QUALIFY FOR
DISABILITY SERVICES IN THAT
STATE? WITHOUT HAVING A LOW IQ
OR IDD. SO THERE IS ALL KINDS OF
DIFFERENT THINGS WE HOPE TO
MEASURE IN THESE REPORT CARDS,
JUST TO GET A LAY OF THE LAND
WHERE WE ARE SPECIFICALLY IN
THAT STATE AND HOW CAN WE
IMPROVE AND GET BETTER IN THAT
STATE? ARE FOSTER PARENTS
TRAINED ON FASD? IS THERE
TRAINING AVAILABLE TO THEM TO
SUPPORT YOUTH WITH FASD THAT
MAYBE IN THEIR CARE? BECAUSE YOU
MAY NEED TO PARENT DIFFERENTLY
FOR THAT CHILD THAN A CHILD WITH
SIMPLY TRAUMA. TRAUMA AND FASD
IS A COMBINATION YOU MIGHT COME
INTO CONTACT WITH AND HOW DO YOU
DO THAT. THIS IS ARE ALL THINGS
WE HOPE TO TRACK ON THE STATE BY
STATE BASIS. THROUGH THIS
PROJECT AND THROUGH THE OUTREACH
WE ARE DOING FOR THE FAMILIES
THAT ARE CONNECTING WITH US.
>> ANOTHER QUESTION THAT CAME
IN, MOST PEOPLE ARE CALLING
SEARCHING FOR DIRECT SERVICES,
DO YOU EVER GET CALLS FROM
INDIVIDUALS OR AGENCIES
REQUESTING TRAINING?
>> SOMETIMES WE DO, MOST
PROFESSIONALS OR ORGANIZATIONS
ARE CALLING WITH A SPECIFIC
PERSON THEY ARE WORKING FOR OR
WITH AND NEEDING SERVICES OR
SUPPORTS FOR THAT SPECIFIC
PERSON BUT WE HAVE GOTTEN CALL
CASE MANAGERS AND SOCIAL WORKERS
CHILD CARE PROVIDERS. TEACHERS.
>> WHEN I WAS INTRODUCING YOU ALL
AND I MENTIONED HOW FOR YEARS
FASD UNITED HAD MORE STATIC
ONLINE DIRECTORY WHERE PEOPLE
COULD GO. CAN YOU TALK MORE
ABOUT HOW -- WHAT YOU ARE
LEARNING THROUGH TALKING WITH
INDIVIDUALS WHO CALL IN FOR HELP
TO THE NAVIGATOR PROGRAM, HOW
THAT THEN INFORMS UPDATING THE
DIRECTORY, VICE VERSA, IS THE
DIRECTORY GOING TO REMAIN
SOMETHING PEOPLE CAN ALSO ACCESS
OR IS THE GOAL FOR PEOPLE TO
MOVE TOWARD CALLING THE
NAVIGATOR? IF THAT QUESTION
MAKES SENSE.
>> WE WANT IT TO BE WHERE THEY
CALL US BUT WE ARE ALSO WORKING
ON PROVIDING THAT STATIC
DIRECTORY THAT IS MORE
SEARCHABLE FORMAT P. JENN CAN
SPEAK TO THAT TOO.
>> I WOULD HATE TO TAKE AWAY A
RESOURCE THAT WORKS FOR SOME TO
GRANTS A RESOURCE THAT GIVES FOR
OTHERS. WHEN THE RESOURCES ARE
SO COMPLIMENTARY IN NATURE, IT
MAKES SENSE TO HAVE THEM BOTH
BUT DIRECT AS MUCH AS POSSIBLE
TO THE INDIVIDUALIZED EXPERIENCE
THE NAVIGATOR PROVIDES OPPOSED
TO HIGHER BARRIER EXPERIENCE OF
A DATABASE TO SEARCH THROUGH AND
MAKE CONNECTIONS ON YOUR OWN. SO
I DON'T THINK THERE IS AN
INTENTION TO PHASE OUT ONE OVER
THE OTHER BUT. I DO THINK THAT
THEY CAN WORK DEFINITELY IN A
COMPLIMENTARY WAY.
>>
>> ARE THERE OTHER QUESTIONS
FROM ANYONE? BILL, GO AHEAD.
>> I WAS WONDERING IF THERE IS
AN OPPORTUNITY TO FOLLOW-UP WITH
INDIVIDUALS YOU ARE PROVIDING
RESOURCES TO SEE IN THE FUTURE
THREE MONTHS, SIX MONTHS FROM
NOW WHAT WORKED FOR THEM AND
DIDN'T WORK, MAYBE GIVE
OPPORTUNITY FOR SOME FEEDBACK.
>> THAT IS DEFINITELY PART OUR
EVALUATION PLAN FOR THE PROGRAM.
WE DO WANT TO KNOW IS THIS
HELPFUL AND USEFUL? WHICH
RESOURCES WERE MOST HELPFUL?
WHICH HARDER TO CONNECT WITH,
WHAT ARE THE BARRIERS. YEAH
THAT, IS DEFINITELY PART OF THE
WORK PLAN TO HAVE THAT KIND OF
EVALUATION PUT IN PLACE.
>> THANKS, JENN. TATIANA HAS A
QUESTION.
>> I WANT TO ASK WHAT YOU
EXPERIENCES CAN BE WITH
PROVIDERS PHYSICIAN CALL YOU OR
MAYBE SOCIAL PROFESSIONAL,
SOMETHING ELSE. I QUOTE UNQUOTE
WHEN JENN DESCRIBED SOME OF THE
EXPERIENCES WITH EDUCATION, I
JUST ALWAYS WAS THINKING WHICH
PROVIDE EDUCATION TO
PROFESSIONALS AND IT IS NEVER
ENOUGH. WE TRAIN, WE PROVIDE,
JENN DESCRIBE JUST VERY
DIFFERENT SYSTEMS DESCRIBED
EDUCATION SYSTEM BUT IT DOESN'T
HAVE TO BE EDUCATION, WHEN
SOMEONE WHO GETS IN TOUCH WITH
SOMEONE WHO HAS Ph.D. CAN
CONTACT SOMEONE WHO CAN HELP IN
THIS SPECIFIC SITUATION, IT IS
REALLY VERY SIMILAR TO WHAT YOU
DO WITH (INAUDIBLE) YOU NAVIGATE
PEOPLE, FAMILIES WITH SERVICES.
SO I WAS JUST THINKING JENN
DESCRIBED, IT IS JUST VERY
DIFFERENT. IN ADDITION TO
GENERAL EDUCATION, ITS CAN BE
SOMETHING WHICH WILL MITIGATE
THIS PROFESSIONAL TO JUST
INFORMATION TO HELP MAYBE JUST
BACK UP MAYBE SITUATION, MAYBE
SOMETHING. SO MY QUESTION IS, TO
MAKE IT SHORT, WHAT EXPERIENCES
YOU HAVE WITH PROFESSIONALS, DO
THEY CALL YOU?
>> DO YOU WANT TO TAKE THAT
HEATHER?
>> I WAS GOING TO SAY
PROFESSIONALS WE CALL ARE MOSTLY
THE ONES THAT HAVE SPECIFIC
FAMILIES THEY ARE TRYING TO
HELP. AND THEY CALL LOOKING FOR
SPECIFIC THINGS FOR THEM. WE
HAVE PROVIDED INFORMATION ON
TRAININGS AND THINGS TO THOSE
THAT HAVE REQUESTED IT AS WELL.
>> THE OTHER THING WE DO PROVIDE
IS THERE ARE THROUGH FASD
COLLABORATIVE, WE DO PROVIDE
THEM WITH ACCESS TO OR
INFORMATION ON THE SPECIAL
INTEREST GROUPS. THE DISCIPLINES
SPECIFIC SPECIAL INTEREST GROUPS
THEY HOST THERE SO THEY CONNECT
WITH OTHER PEOPLE IN THEIR FIELD
WHO ARE SPEAKING THE SAME
LANGUAGE SO TO SPEAK. WE CONNECT
THEM THROUGH THE CDC TO OUR
PARTNERS SO IF SOMEBODY IN
FAMILY MEDICINE IS CONTACTING
US, WE WANT TO CONNECT THEM WITH
THE AMERICAN ASSOCIATION OF
FAMILY MEDICINE AND THE
CHAMPIONS OUR CDC PARTNERSHIP
THERE SO WE TRY TO MAKE THOSE
CONNECTIONS AS MUCH AS POSSIBLE
AND ANSWER THEIR DIRECT
QUESTIONS THEY MAY HAVE ABOUT
THE INDIVIDUAL THEY SERVE AND
SUPPORT. BUT AS A FORMER
RESIDENT OF B.C. WHOSE CHILDREN
TOOK PART IN THOSE PROGRAMS YOU
ARE REFERENCING TATIANA, THEY
WERE GREAT.
>> OTHER QUESTIONS?
>> IT IS JENN. CAN I ASK A
QUESTION ABOUT THE DIAGNOSIS?
WHEN YOU ARE TRACKING ARE YOU
TRACKING WHEN PEOPLE ARE LOOKING
FOR DIAGNOSIS, ARE YOU
SEPARATING THEM OUT BY AGES OR
JUST IN GENERAL POT?
>> WE ARE TRACKING BY AGES. SO
WE ARE LOOKING AT WHO -- AND WE
ARE ONLY TRACKING WITH THIS
POINT BY PEDIATRIC VERSUS ADULT.
BUT WE ARE DEFINITELY TRACKING
THAT DATA BECAUSE WE KNOW WELL
DIAGNOSTIC CAPACITY IS NOT WHERE
WE WANT IT FOR YOUTH IT IS LESS
FOR ADULTS AT THIS POINT. ONE
BIG CHALLENGE WE HAVE WHEN
CONTACTD BY ADULTS WHO SUSPECT
FASD IS CONNECT THEM WITH
SOMETHING ABLE TO GIVE THEM A
DIAGNOSIS.
>> I PUT A QUESTION IN THE CHAT,
IT IS KATRINA. WHEN YOU GUYS DO
YOUR TRAININGS YOU HAVE
INDIVIDUALS PRESENTING ALONGSIDE
YOU OR DOING THE TRAININGS WITH
YOU BECAUSE IT IS VERY DIFFERENT
WHEN PEOPLE TALK ABOUT FASD AND
TRAIN ON FASD VERSUS SOMEONE WHO
IS LIVING WITH IT. IT IS VERY,
VERY DIFFERENT. DO YOU HAVE
INDIVIDUALS DOING THAT TRAINING
ALONGSIDE YOU AND IF YOU HAVE,
WHAT HAVE THE DIFFERENCES BEEN?
>> WE ARE -- WHEN WE ARE
REFERRING TO FAMILY NAVIGATOR
PROGRAM WE ARE TYPICALLY
REFERRING TO OUR AFFILIATES, TO
OUR CDC PARTNERS, TO OTHER
OUTSIDE ORGANIZES OUTSIDE OF
TRAINING BUT I CAN SAY HONESTLY
THE TRAININGS WHERE THERE ARE
INDIVIDUALS WITH FASD PRESENT
ABLE TO SPEAK ABOUT THEIR LIVING
EXPERIENCE AND WHAT WORKS BEST
FOR THEM AND DOESN'T WORK BEST
FOR THEM. AND JUST HOW THIS THE
APPROACH BEING TAKEN IMPACTS
THEM DIRECTLY IN THEIR LIVES IS
INCREDIBLY POWERFUL AND
EXTREMELY IMPORTANT. SO THE
WORK YOU ARE DOING WITH THE
CHANGE MAKERS, ABSOLUTELY.
HAVING SOMEONE WITH A LIVING
EXPERIENCE AVAILABLE AT THOSE
TRAININGS IS JUST THE ICING ON
THE CAKE. DEFINITELY A WAY TO
IMPROVE THE TRAININGS IN MY
OPINION.
>> I CAN SPEAK TO THAT AS WELL
THROUGH OUR PROJECTS WITH
NATIONAL PROFESSIONAL
ORGANIZATIONS, SUCH AS TRYING TO
REACH HEALTHCARE PROVIDERS TO
EDUCATE THEM ABOUT THE
IMPORTANCE OF THIS TOPIC THAT
WHEN WE HAVE PRESENTATIONS THAT
ARE PAIRED WITH PEOPLE WITH
LIVED EXPERIENCE, MOSTLY BECAUSE
OF OUR RELATIONSHIP WITH FASD
UNITED, IT MAKES A HUGE
DIFFERENCE. SOMETIMES IT IS HARD
TO MEASURE EXACTLY THAT IMPACT
BUT WE TRYING TO DO THAT MORE
AND MORE TO SHOW THAT IS WHAT
PARTICIPANTS SAY WAS THE MOST
IMPORTANT PART OF THE
PRESENTATION FOR THEM.
>> I KNOW FOR MYSELF WHEN I DO
PRESENTATIONS THROUGH WORK ONE
OF THE THINGS THAT HAS BEEN
IMPLEMENTED IS TRAININGS ARE NOT
DONE WITHOUT ME AS AN
INDIVIDUAL. JUST BECAUSE IT
SHOULDN'T BE DONE WITHOUT AN
INDIVIDUAL. BECAUSE THERE IS
SUCH THAT DIFFERENT PERSPECTIVE,
THERE IS KNOWING ABOUT FASD FROM
A CLINICAL POINT OF VIEW OR
SOMEONE WITH 50 YEARS EXPERIENCE
AND I AM NOT NEGATING THAT IN
ANY WAY. THERE IS ALSO A
DIFFERENT EXPERIENCE OF ME OR
REBECCA OR JUSTIN SAYING HEY
THIS WORKS FOR ME. IF
POTENTIALLY PEOPLE ARE LUCKY
ENOUGH TO HAVE MORE THAN ONE
INDIVIDUAL AT A TRAINING, THAT
EVEN MAKES IT MORE VALUABLE
BECAUSE I CAN GO HEY, THIS WORKS
FOR ME. REBECCA CAN GO COOL THAT
WORKS FOR YOU, THIS WORKS FOR
ME. AS An INDIVIDUAL I
WOULD LOVE FOR IT TO BE THE
ABSOLUTE STANDARD ACROSS NORTH
AMERICA THAT WHEN THERE IS A
TRAINING ON FASD, THERE IS
ALWAYS AN ADULT, IT SHOULDN'T BE
A WE NEED TO BRING IN ADULTS WHO
ENHANCE, IT SHOULD JUST BE THE
STANDARD.
>> THANKS, TO ADD SOMETHING WHAT
KAT SAID BECAUSE LAST WEEKEND
THERE WAS A THREE HOUR
EDUCATIONAL TRAINING ON FASD
SCHOOL STUFF DONE IN ONTARIO
THAT HAD ONE OF THE CHANGE
MAKERS FROM IRELAND AS ON IT.
AND SHE WAS ABLE TO DO SOMETHING
THAT I DON'T KNOW ANYBODY BUT A
PERSON WITH FASD COULD DO. SOME
PARENTS WERE DISCUSSING SOME
ISSUES AROUND THE PROBLEMS WITH
DISASTER BEDROOMS AND HOW THE
MESS CREEPS EVERYWHERE. SHE
EXPLAINED WHAT HAPPENED TO HER
AND HOW HER PARENTS APPROACHED
IT. SOMETHING SHE SAID NO ONE
UNDERSTOOD, THIS GOES TO A PIECE
AROUND MEMORY NOBODY THINKS
ABOUT. HER PARENTS WERE THROWING
OUT ALL THE QUOTE GARBAGE IN HER
ROOM AND SHE SAID IT WAS
CHRISTMAS WRAPPING PAPER FROM
TWO OR THREE YEARS, SHE HAD BUT
THEY DIDN'T UNDERSTAND THAT'S
HOW I COULD REMEMBER CHRISTMAS
AND I COULD REMEMBER THE GIFT.
THE TOY GOT BROKEN A LONG TIME
AGO BUT WHEN I SAW THE PAPER I
REMEMBERED IT AND HOW HAPPY I
WAS, AND IT WAS FOR HER THIS
MEMORY SUPPORT. THERE WAS
DEAD SILENCE OF THIS WHOLE GROUP
GOING I NEVER THOUGHT OF IT THAT
WAY AND THE TRAINERS HADN'T
THOUGHT ABOUT IT AND THE TRAINER
SAID OH MY GOD. YES THAT IS
WHAT, WE HAVE TO LOOK
DIFFERENTLY AND THAT IS
SOMETHING THAT ADULTS WITH FASD
BRING THAT ARE ABLE TO THEN LOOK
BACK AND INTERPRET WHAT THEY DID
AND WHY. I'M NOT SURE ANYBODY
ELSE CAN DO. I WANTED TO --
>> I'M GOING TO WRAP US UP. I
THINK TATIANA YOU HAVE A QUICK
QUESTION YOU SAID
>> VERY QUICK, IT IS IN LINE
WITH WHAT JUST DISCUSSED, I WANT
TO ASK, NOT FOR TRAINING BUT
WHEN YOU (INAUDIBLE) PEOPLE FROM
SERVICES, OR SUPPORT, DO YOU
HAVE SOURCES WHEN YOU CAN MAKE
REFERRALS TO SELF-SUPPORT GROUPS
ONLINE GROUPS, IF YOU CAN JUST
QUICKLY AT THIS POINT.
>> THAT'S A THING WE GET A LOT.
WE SEND THEM TO FACEBOOK GROUPS,
SEND THEM TO FASD COLLABORATIVE
HAS A LIST OF SUPPORT GROUPS, WE
KNOW OF OTHERS WE HAVE SAVED WE
HAVE COME ACROSS. WE DEFINITELY
CONNECT WITH SUPPORT GROUPS.
BOTH INDIVIDUALS AND FAMILIES.
AND AS JENN SAID PROFESSIONALS
HAVE THE COLLABORATIVE GROUP.
>> ARE WE ABLE TO TAKE ONE LAST
QUESTION FROM KATHY HOTELLING?
>> IF IT IS BRIEF GO AHEAD OR
SAVE FOR LATER.
>> I CAN BE BRIEF, JUST A
COMMENT IN REGARD TO INVOLVEMENT
OF THOSE WITH FASD ON TRAININGS.
I ABSOLUTELY AGREE BUT I HAVE TO
SAY THAT VANCOUVER IS AN
EXCEPTION TO WHERE THERE ARE
INDIVIDUALS. I KNOW YOU CAN
SPEAK ANY PLACE THROUGH THE
POWER OF ZOOM BUT WE HARDLY HAVE
-- WE DONE HAVE THAT MANY PEOPLE
ADULTS DIAGNOSED SAY NOTHING
ABOUT THOSE THAT WOULD EVEN COME
CLOSE TO BEING COMFORTABLE IN
SPEAKING. MY DAUGHTER HAS
SPOKEN WITH ME. SHE NEEDS A LOT
OF WORK ON DOING THAT. BUT THAT
IS NOT -- Y'ALL ARE IN A UNIQUE
POSITION. PI APPLAUD JAN FOR ALL
SHE HAS DONE TO HELP YOU GET TO
THAT PLACE AND ALL THE EFFORTS
YOU EACH HAVE MADE. BUT YOU NEED
TO REALIZE YOU ARE SPECIAL.
>> THANK YOU ALL SO MUCH FOR
AGREEING TO SPEAK TO THIS GROUP.
I THINK ONE THING WE CAN ALL DO
WHETHER FEDERAL AGENCY OR
NON-PROFIT ORGANIZATION,
INDIVIDUAL, ANYONE ON THIS GROUP
IS TO HELP GET THE WORD OUT
ABOUT THE FASD UNITED NAVIGATOR
PROGRAM AND LINK TO IT FROM OUR
WEBSITES OR SOCIAL MEDIA OR WHAT
HAVE YOU. SO THANK YOU ALL AND I
KNOW WE HAVE CUT INTO THE BREAK
SO I WILL TURN IT BACK TO
TATIANA.
>> THANK YOU SO MUCH. GREAT
DISCUSSION. IT IS TIME FOR THE
BREAK. LET'S TAKE FIVE MINUTES,
SIX MINUTES. 3:20 WE ARE COMING
BACK. THANK YOU.
>> GOOD AFTERNOON, EVERYBODY.
THANK YOU FOR COMING BACK, IT
HAS BEEN BUSY DAY. WE APPRECIATE
YOU TO STAYING WITH US. AND WITH
THAT, WE CONTINUE NOW WITH THIS
SESSION OF FEDERAL AGENCY
REPORTS OF ACTIVITIES FROM 2022.
DURING THE SESSION WE WILL HEAR
FROM COMMITTEE MEMBERS WHO
REPRESENT NIH INSTITUTES, THE
REPORTS WILL BE GIVEN IN THE
ORDER INCLUDED ON THE AGENDA AND
THANK YOU, EVERYBODY FOR STAYING
ON THE AGENDA TODAY. WE KNOW WE
HAVE MANY PARTICIPANTS ON
VIDEOCAST AND WE WANT TO STAY ON
TIME. PLEASE HAVE QUESTIONS
READY FOR DISCUSSION. AT THE
END OF PRESENTATIONS WE WILL
HAVE TIME TO DISCUSS AND ASK
QUESTIONS, WITH THAT I WOULD
LIKE TO TURN OVER TO DR. BILL
DUNTY Ph.D. Ph.D. NIAAA. U
>> MY NAME IS BILL DUNTY,
PRESEARCH COORDINATOR FOR NIAAA,
AND UPDATE FOR FISCAL YEAR 2022
NIAAA WAS ESTABLISHED IN 1970
AND TODAY IS THE WORLD' LARGEST
FUNDER OF ALCOHOL RESEARCH. OUR
MISSION IS TO GENERATE AND
DISSEMINATE FUNDAMENTAL
KNOWLEDGE ABOUT EFFECTS OF
ALCOHOL ON HUMAN HEALTH AND WELL
BEING AND TO APPLY THAT
KNOWLEDGE TO IMPROVE THE
DIAGNOSIS, PREVENTION AND
TREATMENT OF ALCOHOL RELATED
PROBLEMS ACROSS THE LIFE SPAN.
NIAAA SUPPORTS FOUR MAIN AREAS
OF FASD RESEARCH. THROUGH OUR
GRANTS AND OTHER ACTIVITIES, WE
SUPPORT RESEARCH PROJECTS IN THE
AREAS OF FASD ETIOLOGY,
INTERVENTION, PREVENTION AND
DIAGNOSIS. OVER THE LAST FIVE
YEARS NIAAA FUNDING FOR RESEARCH
AND TRAINING GRANTS HAS BEEN ON
THE RISE WITH APPROXIMATELY 442
MILLION ALLOTTED FOR THOSE
ACTIVITIES IN FISCAL YEAR 2022.
OVER THAT SAME PERIOD OF TIME,
AWARDS TO FASD RESEARCHERS HAS
REMAINED RELATIVELY STEADY MAKE
UP NEARLY 8% OF NIAAA ENTIRE
RESEARCH AND TRAINING BUDGET
FY 2022 APPROXIMATELY 7.9% OF
OUR EXTRAMURAL DOLLARS
REPRESENTING ABOUT 35 MILLION
SUPPORTED 101 FASD GRANTS, 24 OF
WHICH WERE NEW AWARDS MADE IN
2022. TO LEARN MORE ABOUT
RESEARCH PROJECTS THEMSELVES I
SUGGEST VISITING THE NIH
REPORTER WEBSITE IN SEARCHING
FOR FETAL ALCOHOL SPECTRUM
DISORDERS UNDER THE NIH SPENDING
CATEGORY PULL DOWN. AMONG
GRANTS RELATED TO ETIOLOGY THIS
TABLE GIVES YOU EXAMPLES OF THE
RESEARCH TOPICS COVERED. THESE
INCLUDE THE IMPACT OF PAE OR
PRE-NATAL ALCOHOL EXPOSURE ON
STEM CELLS AND CELLULAR AGING.
AND THE POSSIBLE CONTRIBUTIONS
TO EARLY ONSET DEMENTIA AND
PREMATURE AGING IN ADULTS WITH
FASD. STUDIES ON CARDIOVASCULAR
DISEASE IN INDIVIDUALS WITH
FASD, AND MECHANISMS BY WHICH
ALCOHOL AND MARIJUANA EXPOSURE
IN UTERO MAY PREDISPOSE
INDIVIDUALS TO FUTURE ALCOHOL
MISUSE. AMONG INTERVENTION
GRANTS THIS UO1 PROJECT
EVALUATES EFFICACY OF COMBINING
COMPUTERIZED COGNITIVE TRAINING
AND LOW VOLTAGE BRAIN
STIMULATION TO IMPROVE ATTENTION
AND WORKING MEMORY IN CHILDREN
WITH FASD. AND AMONG OUR NEW
PREVENTION GRANTS WE HAVE
INVESTIGATORS SEEKING TO ADAPT A
BEHAVIORAL INTERVENTION TO
DECREASE POLYSUBSTANCE USE OF
ALCOHOL AND TOBACCO OR CANNABIS
DURING PREGNANCY AND LACTATION
FOR WOMEN IN SOUTH AFRICA. AND
THE USE OF A COMPUTER DELIVERED
BRIEF ALCOHOL INTERVENTION THAT
IS REINFORCED BY NURSES IN
PRE-NATAL CARE CLINICS IN THE
UNITED STATES. SOMETIMES
PROJECTS MAY INCLUDE RESEARCH
ACROSS MULTIPLE AREAS. FOR
EXAMPLE, GRANTS FUNDING BOTH
ETIOLOGY AND INTERVENTION
RESEARCH TO TARGET MOLECULAR
PATHWAYS TO RESCUE ALCOHOL
INDUCED BIRTH DEFECTS IN MICE.
REDUCE MICROGLIA ACTIVATION
CAUSED BY PRE-NATAL ALCOHOL
EXPOSURE IN THE BRAIN TO RESTORE
SYNAPTIC FUNCTION AND RESCUE
BEHAVIORAL DEFICITS AND STUDIES
TO REDUCE MICROGLIA MEDIATED
INFLAMMATION USING A SMALL
MOLECULE INHIBITOR AS POTENTIAL
INTERVENTION IN A MOUSE MODEL.
NEXT FEW SLIDES I WANT TO TAKE A
MOMENT TO HIGHLIGHT THE LARGER
CENTERS AND RESEARCH CONSORTIA
FASD. CIFASD IS FOCUSED ON
IMPROVING FASD DIAGNOSES ACROSS
THE LIFE SPANS AND HEALTH
OUTCOMES IN INDIVIDUALS WITH
FASD. IT WAS RENEWED ANOTHER
FIVE YEARS IN FY 2022. AMONG
SPECIALIZED RESEARCH CENTERS,
NMARC AT THE UNIVERSITY
OF MEXICO CONSISTS OF BOTH
PRE-CLINICAL AND CLINICAL
STUDIES, ADDRESSING THE
NEUROBIOLOGICAL MECHANISMS
UNDERLYING THE BEHAVIORAL
PROBLEMS ASSOCIATED WITH FASD.
THE DEVELOPMENTAL EXPOSURE
ALCOHOL RESEARCH CENTER AT
BINGHAMTON UNIVERSITY HAS A MAIN
RESEARCH PROJECT FOCUSED ON PAE
FOCUSED ON ANIMAL MODELS TO
UNDERSTAND THE FUNCTIONAL AND
NEURAL EFFECTS OF ALCOHOL
EXPOSURE THROUGHOUT BRAIN
DEVELOPMENT. AND AMONG OUR
LARGER SPECIALIZED CENTERS N
CARE WHICH STANDS FOR THE NATIVE
CENTER FOR ALCOHOL RESEARCH AND
EDUCATION, HAS A MAIN PROJECT ON
PREVENTING ALCOHOL EXPOSED
PREGNANCIES, AMONG NATIVE
AMERICAN WOMEN IN SOUTH DAKOTA.
FOR MORE INFORMATION ON ANY OF
THESE CONSORTIA OR CENTERS I
ADVISE YOU TO VISIT NIAAA HOME
PAGE ON FASD LISTED AT THE
BOTTOM OF THE SLIDE. CURRENTLY
NIAAA HAS PUBLISHED OR
PARTICIPATES IN FUNDING
OPPORTUNITY ANNOUNCEMENTS TO
ENCOURAGE RESEARCH ON PREGNANCY,
AND FASD. THEY INVOLVE RESEARCH
ON NOVEL INTERVENTION AND
PREVENTION APPROACHES FOR FASD
ACROSS THE LIFE SPAN. THE
PEDIATRIC HEALTHCARE TRANSITION
FOR YOUTH WITH CHRONIC MEDICAL
CONDITIONS AND THOSE WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES. EMERGING ISSUES OF
COVID-19 RELATED TO THE HEALTH
AND WELL BEING OF WOMEN CHILDREN
AND INDIVIDUALS WITH PHYSICAL
AND/OR INTELLECTUAL
DISABILITIES, ADDRESSING GAPS IN
EVIDENCE BASED SCREENING
INCLUDING THE SCREENING OF
ALCOHOL USE DURING PREGNANCY,
AND FOR FASD. AND SECONDARY DATA
ANALYSIS OF EXISTING ALCOHOL
RELATED DATA SETS. FOR MORE
INFORMATION ON THESE
ANNOUNCEMENTS YOU CAN VISIT
GRANTS.NIH.GOV. PAST OCTOBER
NIAAA ALONG WITH INTERAGENCY
WORKING GROUP UNDER DRUG USE IN
WOMEN AND GIRLS POSTED A TWO DAY
SCIENTIFIC CONFERENCE TO REVIEW
KEY FINDINGS, FROM CURRENT
RESEARCH ON THE CAUSES,
CONSEQUENCES PREVENTION AND
TREATMENT OF HARMFUL ALCOHOL
OPIOID AND OTHER SUBSTANCE USE
AMONG WOMEN AND GIRLS AND BEST
APPROACHES TO SUSTAINING
RECOVERY. THE TARGET AUDIENCE
CONSISTED OF GENERAL HEALTHCARE
PROVIDERS, ADDICTION PREVENTION
AND TREATMENT PRONAILINGSES,
POLICY MAKERS, ADDICTION
RESEARCHERS, EDUCATORS AND FAITH
AND COMMUNITY LEADERS. THE OVER
ARCHING GOAL OF THE CONFERENCE
WAS TO IDENTIFY IMPORTANT
DIRECTIONS FOR FUTURE RESEARCH
AND TO HIGHLIGHT STRATEGIES THAT
ARE ALREADY WORKING TO ADDRESS
THESE PROBLEMS WITH THE GOAL OF
REPLICATING AND BRINGING
EFFECTIVE INTERVENTIONS TO
POPULATION SCALE. HERE I LIST
PARTS OF THE PROGRAM RELATED TO
ALCOHOL USE DURING PREGNANCY.
AND FASD. THESE INCLUDED A PANEL
ENTITLED MODEL PROGRAMS FOR
MOTHERS WITH ALCOHOL USE
DISORDER, OTHER SUBSTANCE USE
DISORDERS IN CHILDREN WITH
PRE-NATAL SUBSTANCE EXPOSURE.
AND TWO PRESENTATIONS ON MODELS
THAT PREVENT FASD BY SUPPORTING
WOMEN LIVING WITH SUBSTANCE USE
DISORDERS, AND ON ADVOCACY FOR
THE FASD COMMUNITY. AS WELL AS
BREAK-OUT SESSIONS ON RELEVANT
HIGH PRIORITY POPULATIONS. THIS
MEETING WOULD NOT HAVE BEEN
POSSIBLE WITHOUT MULTIPLE
SPONSORS AND PARTNERS MANY WHICH
PARTICIPATE IN THE ICCFASD. AND
IF YOU MISSED PORTIONS OF THE
MEETING A RECORDING AND SUMMARY
OF THE CONFERENCE WILL BE POSTED
ON NIAAA'S WEBSITE. ENOUGH FY
2022 NIAAA LAUNCH A NEW ONLINE
EDUCATIONAL RESOURCE CALLED THE
HEALTHCARE PROFESSIONALS CORE
RESOURCE ON ALCOHOL. WHICH
COVERS THE BASICS OF WHAT EVERY
HEALTHCARE PROFESSIONAL NEEDS TO
KNOW ABOUT WHOLE, INCLUDING THE
WAYS IT CAN IMPACT THE PATIENT'S
HEALTH AND ASSISTANCE WITH
ALCOHOL SCREENING AND
INTERVENTION. IT WAS PRACTICING
PHYSICIANS IN CLINICAL
PSYCHOLOGISTS WITH BUSY
CLINICIANS IN MIND. THE RESOURCE
OFFERS FREE CONTINUING EDUCATION
CREDITS, AND I HAVE MARKED HERE
WITH RED STARS THOSE ARTICLES
THAT ADDRESS PRE-NATAL ALCOHOL
EXPOSURE AND FASD IN THE CORE
RESOURCE. FINALLY NIAAA
PARTICIPATES AND PROVIDES
SUPPORT FOR SEVERAL NIH WIDE
PEDIATRIC INITIATIVES. THESE
INCLUDE THE ADOLESCENT BRAIN AN
COGNITIVE DEVELOPMENT STUDY, OR
ABCD, THE GABRIELLA MILLER KIDS
FIRST PEDIATRIC RESEARCH
PROGRAM, AND THE HEALTHY BRAIN
AND CHILD DEVELOPMENT STUDY OR
HBCD, OF WHICH YOU WILL HEAR
MORE ABOUT IN A SUBSEQUENT
PRESENTATION. .
WITH THAT, THANK YOU FOR YOUR
ATTENTION. FOR MORE INFORMATION
ON NIAAA'S FASD RESEARCH
PROGRAM, I ENCOURAGE YOU TO TO
VISIT THE URL LISTED BELOW.
>> I'M TRACY KING AND I'M
MEDICAL OFFICER AND INTELLECTUAL
DEVELOPMENTAL DISABILITIES
BRANCH AT THE EUNICE KENNEDY
SHRIVER NATIONAL INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT OR NICHD. I WOULD
LIKE TO THANK THE NATIONAL
INSTITUTE ON ALCOHOL ABUSE AN
ALCOHOLISM OR NIAAA AND THE
INTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRAL DISORDERS OR ICCFASD
FOR THE OPPORTUNITY TO DISCUSS
THE NICHD ACTIVITIES WITH
RELEVANCE TO FETAL ALCOHOL
SPECTRUM DISORDERS. FIRST I
WOULD LIKE TO GIVE YOU A BRIEF
OVERVIEW OF NICHD AND THE
RESEARCH WE SUPPORT. OUR
INSTITUTE IS NOTABLE FOR ITS
BREADTH MISSION AND SCOPE. WE
FUND A SPECTRUM OF BASIC
TRANSLATIONAL AND CLINICAL
RESEARCH ACROSS MULTIPLE AREAS
OF SCIENCE. THIS ENCOMPASSES A
BROAD RANGE OF CHILD HEALTH
RESEARCH INCLUDING DEVELOPMENT
AND BEHAVIOR INTELLECTUAL
DEVELOPMENTAL DISABILITIES,
GROWTH IN NUTRITION AND TRAUMA
AND CRITICAL CARE. WE ALSO FUND
RESEARCH ADDRESSING PRE-NATAL
PERINATAL AND NEONATAL HEALTH
WHICH OBVIOUSLY HAS POTENTIAL
RELEVANCE TO FASD. HOWEVER NICHD
IS ALSO MAJOR FUNDER OF RESEARCH
ON PREGNANCY AND MATERNAL HEALTH
AS WELL AS MULTIPLE ASPECTS OF
REPRODUCTIVE HEALTH INCLUDING
THE AREAS LISTED HERE. FINALLY
NICHD HAS AS THE NATIONAL CENTER
FOR MEDICAL REHABILITATION
RESEARCH OR NCMRR WHICH SUPPORTS
REHABILITATION RESEARCH ACROSS
THE LIFE SPAN. AT NICHD WE FUND
FEW AWARDS FOCUSED SPECIFICALLY
ON ALCOHOL ABUSE DURING
PREGNANCY OR SPECIFICALLY ON
CHILDREN WITH FASD. HOWEVER WE
ARE CURRENTLY INVOLVED IN
MULTIPLE EFFORTS THAT HAVE
POTENTIAL RELEVANCE TO FASD.
THESE INCLUDE THE IMPROVE
INITIATIVE WHICH STANDS FOR
IMPLEMENTING MATERNAL HEALTH AND
PREGNANCY OUTCOMES VISION FOR
EVERYONE. IT IS FOCUSED ON
ADDRESSING MATERNAL MORBIDITY
AND MORTALITY. I ALSO LIKE TO
SHARE SOME INFORMATION ABOUT
NICHD RECENT EFFORTS TO ADDRESS
ABLEISM WHICH IS DISCRIMINATION
AGAINST INDIVIDUALS WITH
DISABILITIES. IN MEDICINE AND
CLINICAL RESEARCH. FIRST I WOULD
LIKE TO DISCUSS THE IMPROVE
INITIATIVE. AS THE NAME
SUGGESTS, THE IMPROVE INITIATIVE
IS AN ONGOING NIH WIDE
INITIATIVE TO ADDRESS HIGH RATES
OF PREGNANCY RELATED
COMPLICATION AND DEATH IN THE
U.S. WHICH WE ALSO REFER TO
ASTHMA TERM MORBIDITY AND
MORTALITY. THIS INITIATIVE
ENCOMPASSES FOUNDATIONAL BIOLOGY
AND SOCIAL BIOBEHAVIORAL
RESEARCH AND COMMUNITY PARTNERS
ARE KEY VOICES ASSESSING NEEDS
AND IMPLEMENTING INTERVENTION.
IT IS CURRENTLY LED BY NICHD,
THE NIH OFFICE OF RESEARCH ON
WOMEN'S HEALTH, OR ORWH. AND THE
NATIONAL INSTITUTE OF NURSING
RESEARCH. OR NINR. ITS
PARTICIPANTS INCLUDES OVER 30
NIH INSTITUTES CENTERS AND
OFFICES INCLUDING NIAAA AND
MULTIPLE OTHER NIH INSTITUTES
THAT ARE PART OF ICCFASD. THE
GOALS OF THE IMPROVE INITIATIVE
ARE TO ADDRESS LEADING CAUSES OF
PREGNANCY RELATED MATERNAL
MORTALITY MORBIDITY MORTALITY
INCLUDING ILLNESS BY BUILDING
EVIDENCE CASE FOR IMPROVED CARE
AND OUTCOMES. THREE FOCUS AREAS
CARDIOVASCULAR DISEASE,
INFECTION AND IMMUNITY, AND
MENTAL HEALTH AS WELL AS
OVERARCHING THEME OF ADDRESSING
DISPARITIES BY RACE ETHNICITY
AGE AND GEOGRAPHIC REGION. ALL
HIGHLIGHT THE SUBSTANCE ABUSE
DURING PREGNANCY INCLUDING
ALCOHOL USE FALLS SQUARELY
WITHIN IMPROVE AREAS OF FOCUS.
NEXT I WOULD LIKE TO DISCUSS
NICHD EFFORTS AROUND ABLEISM AND
DISABILITY INCLUSION. ABLEISM IS
THE ASSUMPTION THAT PERSONS WITH
DISABILITIES ARE INFERIOR OR
INADEQUATE. LEADING TO
DISCRIMINATION AND SOCIAL
PREJUDICE. UNFORTUNATELY
ABLEISM OFTEN RESULTS IN PERSONS
WITH DISABILITIES BEING DENIED
ACCESS TO MEDICAL CARE,
RECEIVING LOWER QUALITY CARE,
AND BEING DENIED THE OPPORTUNITY
TO PARTICIPATE IN RESEARCH THAT
COULD ULTIMATELY IMPROVE THEIR
LIVES AND THE LIVES OF MANY
OTHERS. SOME ARGUMENTS HAVE BEEN
USED TO JUSTIFY DENYING DISABLED
PERSONS ACCESS TO RESEARCH OR
CLINICAL CARE ARE LISTED HERE.
CLINICAL PROVIDERS AND
RESEARCHERS MAY ASSUME IT IS NOT
SAFE FOR A PERSON WITH
DISABILITY TO UNDERGO PROCEDURE
OR TO PARTICIPATE IN A RESEARCH
STUDY WITHOUT ANY SUPPORTING
EVIDENCE. TRADITIONAL MEDICAL
MODELS SEE DISABLES AS ILLNESSES
OR DEFICITS THAT ARE INHERENT TO
THE PERSON AND THUS MAY NOT
RECOGNIZE ENVIRONMENTAL OR
STRUCTURAL BARRIERS THAT PREVENT
DISABLED PERSONS FROM ACCESSING
CLINICAL CARE OR RESEARCH
OPPORTUNITIES. HEALTHCARE
RESEARCH FACILITIES MAY ASSUME
THAT IT IS TOO DIFFICULT AND
EXPENSIVE TO MAKE EVERYTHING
ACCESSIBLE. RESEARCHERS MAY
EXCLUDE DISABLED PERSON RESEARCH
BECAUSE THEY THINK IT WILL ADD
VARIABILITY OR HETEROGENEITY TO
THE DATA THEY COLLECT. MAKING
THEIR DATA MESSY. TO ADDRESS
THIS ISSUE THE NATIONAL
INSTITUTE OF MEDICAL
REHABILITATION RESEARCH WHICH IS
PART OF NICHD, IS HOSTING A TWO
DAY WORKSHOP LATER THIS MONTH ON
ABLEISM IN MEDICINE AND CLINICAL
RESEARCH. THE GOAL OF THIS
WORKSHOP IS TO HIGHLIGHT
OPPORTUNITIES TO MITIGATE THE
IMPACT OF ABLEISM IN CLINICAL
CARE RESEARCH. THE EASIEST WAY
TO FIND REGISTRATION LINK FOR
THE WORKSHOP IS SIMPLY TO DO
INTERNET SEARCH FOR NIH ABLEISM
WORKSHOP AND FOLLOW THE LINKS TO
REGISTRATION PAGE. THANK YOU FOR
THIS OPPORTUNITY TO SHARE
INFORMATION ABOUT NICHD. I LOOK
FORWARD TO THE COMING
DISCUSSION.
>> HELLO. I'M CHRIS SARAMPOTE
CHIEF OF BIOMARKER INTERVENTION
DEVELOPMENT CHILDHOOD DISORDERS
BRANCH DIVISION OF TRANSLATIONAL
RESEARCH AT THE NATIONAL
INSTITUTE OF MENTAL HEALTH. I AM
ONE OF TWO REPRESENTATIVES FOR
NIMH ON THE ICCFASD. THE OTHER
IS JULIA ZEHR CHIEF
DEVELOPMENTAL MECHANISMS AND
PSYCHOPATHOLOGY BRANCH WITHIN
THE DIVISION OF TRANSLATIONAL
RESEARCH. WE ARE GRATEFUL FOR
THE OPPORTUNITY TO REPRESENT
NIMH ON ENTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDERS. NIMH IS LEAD
FEDERAL AGENCY FOR RESEARCH ON
MENTAL DISORDERS AN SUPPORTS
RESEARCH THAT SPANS THE ENTIRE
PIPELINE MENTAL HEALTH RESEARCH
FROM BASIC STUDIES OF MECHANISMS
OF UNDERLYING COMPLEX EMOTION
AND BEHAVIOR, STUDIES OF
TRAJECTORIES OF MENTAL ILLNESS
FROM CHILDHOOD TO YOUNG AND
OLDER ADULTS. STUDIES THAT
DEVELOP NEW INTERVENTIONS,
PREVENTATIVE INTERVENTIONS, AND
STUDIES THAT IMPACT THE
INTERVENTIONS AND SERVICES THAT
EXIST ON ALLEVIATING THE BURDEN
OF MENTAL ILLNESS. NIMH IS
COMMITTED TO DEVELOPING
INNOVATIVE SERVICE DELIVERY
MODELS TO DRAMATICALLY IMPROVE
OUTCOME OF MENTAL HEALTH
SERVICES RECEIVED FIRST COMMUNE
AT THIS AN POPULATIONS, THE
TREATMENT OF MEN TAILNESS IS
CORE MISSION OF NIH AND THE NEED
FOR EFFECTIVE MENTAL HEALTHCARE
WHEN CRITICAL. THESE CHALLENGES
ARE EXACERBATED BY NUMEROUS
FACTORS INCLUDING PANDEMIC, AND
DISPARITIES IN MENTAL HEALTHCARE
AND SOME GROUPS INCLUDING
INDIVIDUALS WITH FASD ARE
PARTICULARLY IMPACTED BY MENTAL
ILLNESS. INDIVIDUALS WITH FASD
ARE INCREASE RISK FOR
PSYCHOLOGICAL DISORDERS SUCH AS
ADHD, ARE PRESCRIBED PSYCH
TROPIC MEDICATIONS AT HIGHER
RATES THAN THOSE WITHOUT AND
INCREASE RISK FOR SUICIDAL
BEHAVIOR. IN ADDITION TO MORE
GENERALLY PRE-NATAL ALCOHOL
EXPOSURE IS ASSOCIATED WITH IN
CHILDREN, PSYCHIATRIC SYMPTOMS
ARE ASSOCIATED WITH PRE-NATAL
ALCOHOL ABUSE, INCLUDING EMOTION
DISREGULATION, PULSESIVETY,
IMPAIRED FUNCTION AND RESPOND
DIFFERENTLY TO STANDARD
PSYCHIATRIC TREATMENTS.
UNDERSTANDING THE THESE
RELATIONSHIPS BETWEEN ALCOHOL
EXPOSURE BEHAVIOR PSYCHIATRIC
SYMPTOMS AND OTHER VARIABLES
LIKE ENVIRONMENT CAN BETTER
UNDERSTAND DEVELOPMENT OF
TRAJECTORIES FOR CHILDREN WITH
AND DETERMINE HOW AND WHEN TO
BETTER INTERVENE. IN ADDITION
MORE WORK IS NEEDED TO BETTER
UNDERSTAND HOW EXISTING MENTAL
HEALTH SERVICES ARE UTILIZED BY
AND BENEFIT -- BY AND BENEFIT
PEOPLE WITH FASD. PUBLIC
PARTNERS AT ICCFASD MADE IT
CLEAR TRAINING FASD AND NEEDS
CHANGE SIGNIFICANTLY OVER LIFE
SPAN. CURRENTLY NIMH DOES NOT
FUND GRANTS FOCUSED ON FASD AND
MENTAL ILLNESS BUT PARTNERS WITH
SISTER NIH INSTITUTES PROVIDE
SCIENTIFIC EXPERTISE AND
IDENTIFY NEW OPPORTUNITIES FOR
COLLABORATION. THIS INCLUDES
ICCFASD, AS WELL AS EFFORTS LIKE
THE NIH HEALTHY BRAIN COGNITIVE
DEVELOPMENT STUDY WE EXAMINE
DEVELOPMENTAL TRAJECTORIES FOR
PERINATAL CHILDHOOD. WITH THIS
COHORT SECONDARY ANALYSES CAN BE
DECONDUCTED TO EXAMINE HOW FAS
IS INVOLVED IN RISK AND
RESILIENCE AND HOW TO MITIGATE
AND PROMOTE EACH. THE OVERVIEW
AND BEHALF OF JULIA AND MYSELF
THANKS FOR THE OPPORTUNITY TO
CONTRIBUTE TO ICCFASD AND TO
LEARN MORE. THANK YOU.
>>
>> HI, MY NAME IS KAISER
HIGHSMITH FROM THE NATIONAL
INSTITUTE ON DRUG ABUSE, HEALTH
SCIENCE ADMINISTRATOR IN THE
DIVISION OF EPIDEMIOLOGY,
SERVICES, PREVENTION RESEARCH.
MY COLLEAGUE JANANI IS ALSO NIDA
DIVISION OF NEUROSCIENCE
BEHAVIOR AND WE BOTH SERVE ON
THE ICCFASD WORK GROUP.
UNFORTUNATELY WE ARE BOTH NOT
ABLE TO JOIN YOU TODAY BUT WE
APPRECIATE THE OPPORTUNITY TO
PROVIDE NIDA UPDATES. SO TODAY
I WILL BE PROVIDING OVERVIEW OF
WHAT UPDATES ON THE NIDA
SUBSTANCE USE DISORDER AND
INFANT OUTCOME RESEARCH
PORTFOLIO. NIDA IS WOMEN AND SEX
GENDER DIFFERENCES RESEARCH WORK
GROUP. AND THEN PROVIDE OVERVIEW
OF NIDA SPONSORED WORKSHOPS THAT
WE RECENTLY HAD AS WELL AS
CURRENT ONE THAT WE ARE -- AND
UPDATE ON OUR HEALTHY BRAIN AND
CHILD DEVELOPMENT STUDY OR HDCD
STUDY. SO OUR SUBSTANCE USE
DISORDER AND INFANT OUTCOME
RESEARCH PORTFOLIO. DURING THE
FISCAL YEAR 2019 THROUGH 2023,
NIDA HAD A WARNED APPROXIMATELY
$119 MILLION ACROSS 217 GRANTS
TO SUPPORT RESEARCH FOCUSED ON
SUBSTANCE USE DISORDER AND
PERINATAL OUTCOMES.
APPROXIMATELY 23% OF FUNDING
APPLICATIONS WERE RO1s
FOLLOWED BY R21 AND R34 AWARDS.
THE SPIKE IN FUNDING IN 2019 THAT
IS REFLECTED ON THE BAR GRAPH IN
THE TOP RIGHT CORNER OF THE
SLIDE, IS REFLECTIVE OF THE
SIGNIFICANT FUNDING TO SUPPORT
HEALTHY BRAIN AND CHILD
DEVELOPMENT STUDY OR HBCD. THE
BAR GRAPH FAR RIGHT YOU SEE A
SHORT OR SMALLER BAR
REPRESENTING 2023. WE ARE STILL
EARLY IN THE EARLY PART OF
PHYSICAL YEAR 2023 SO THIS PART
ALSO EXPECTED TO INCREASE. THE
WORD CLOUD REFLECTS PRIMARY
RESEARCH TOPICS APPLICATIONS
FOCUSED ON NEONATAL SYNDROME
WHERE THOSE PRIMARY TOPICS SO AS I
MENTIONED NIDA HAS A WOMEN AND
SEX GENDER DIFFERENCES RESEARCH
WORK GROUP THAT I CO-CHAIR WITH
MY COLLEAGUE DR. (INAUDIBLE) THE
MISSION OF THIS WORK IS TWOFOLD.
IS TO PROMOTE CAREERS IN WOMEN'S
SCIENTISTS, AND PROMOTE THE
CONDUCT TRANSLATION AND
DISSEMINATION OF RESEARCH ON SEX
GENDER DIFFERENCES IN THE
PHARMACOLOGY AND SOCIOECONOMIC
DETERMINANTS OF SUBSTANCE USE
DISORDERS AND RESPOND TO
SUBSTANCES OF ABUSE. WE ALSO
LOOK TO SUPPORT RESEARCH THAT
LOOK AT THE INTERACTIONS OF SID
RISK FACTORS SUBSTANCE USE
DISORDER AND CHANGES IN FEMALE
PHYSIOLOGY AN BEHAVIOR ACROSS
THE LIFE SPAN. WE DO SUPPORT
RESEARCH THAT ALSO LOOK AT
HEALTH SERVICES THAT MAXIMIZES
THE EFFICIENT DELIVERY OF HIGH
QUALITY PERSONALIZED ADDICTION
TREATMENT AND RELATED SERVICES
TO WOMEN ACROSS THE LIFE SPAN.
THE WORK GROUP HAS THREE PRIMARY
FOCUS AREAS FOR RESEARCH. ONE
WOMEN'S AND MATERNAL HEALTH
RESEARCH SEX GENDER DIFFERENCES
RESEARCH AND ALSO RESEARCH THAT
RESEARCH FROM EARLY CAREER
INVESTIGATORS TO SUPPORT THEIR
CAREER DEVELOPMENT TRAINING FOR
WOMEN SCIENTISTS. I INCLUDE A
QR CODE AT THE BOTTOM OF THE
SLIDE, IF YOU WOULD LIKE TO GET
MORE INFORMATION ON THE WORK
GROUP. NIDA HAVE TWO BRAIN
DEVELOPMENT RESEARCH CONSORTIUM
WORKSHOPS ONE FOCUSED ON IMPACT
OF CO-MORBID COVID. THIS WAS
HELD IN JULY OF 2022, THE
CONSORTIUM CONVENE RESEARCHERS
AN CLINICS WITH EXPERTISE IN
SUBSTANCE USE DISORDER AMONG
PREGNANT WOMEN FETAL DEVELOPMENT
NEONATOLOGY, MATERNAL HEALTH AND
PEDIATRICS. THE WORKSHOP AIM TO
REVIEW THE STATE OF THE SCIENCE
IN COVID-19 AND SUBSTANCE USE
DURING PREGNANCY AN EFFECT ON
THE FETAL AND INFANT DEVELOPMENT
WITH ATTENTION TO RESEARCH GAPS
AND OPPORTUNITY. THE KEYNOTE
ADDRESS AROUND INTERACTIONS THAT
INFLUENCE BRAIN DEVELOPMENT AND
SET THE STAGE FOR FOUR
SUBSEQUENT PRESENTATIONS AND
PRESENTATIONS. PRESENTERS AND
PANELISTS DISCUSS COVID-19
INFECTION WITH ATTENTION TO
VARIANTS ON DEVELOPING FETUS,
PANDEMIC STRESS ON MATERNAL
HEALTH, AND CO-MORBID COVID
INFECTION AND/OR PANDEMIC STRESS
AND SUBSTANCE USE OF FETAL
OUTCOMES IN NEURAL DEVELOPMENT.
PRESENTERS ALSO DISCUSSED
INNOVATIONS AND REMOTE DATA
COLLECTION AND TELEHEALTH BORN
OUT OF THE PANDEMIC. THE SECOND
WORKSHOP FOCUS ON PLACENTAL
FUNCTION AND ADDICTIVE
SUBSTANCES. THIS WORKSHOP WAS
TIMELY GIVEN CRISIS AND MATERNAL
MORTALITY AND EVIDENCE THAT DRUG
OVERDOSE IS A LEADING CAUSE OF
PREGNANCY RELATED DEATH. THIS
WORKSHOP COVERED CLINICAL
RESEARCH BASIC RESEARCH AND
ANIMAL MODELS, GENETICS AND
EPIEPIGENETICS AND EMERGING
TECHNOLOGIES. IT INSPIRED THE
DEVELOPMENT OF HELP IN ADDICTION
LONG TERM FUNDING OPPORTUNITY
ANNOUNCEMENTS THAT WERE
GENERATED IN COLLABORATION WITH
OUR SISTER IC, THE NICHD. THESE
FUNDING OPPORTUNITY
ANNOUNCEMENTS AIM TO SUPPORT
STUDIES THAT EXAMINE THE IMPACT
OF OPIOIDS, ALONE OR IN
COMBINATION, WITH OTHER
SUBSTANCES OF MISUSE. ON
PLACENTA FUNCTION AND NEURAL
DEVELOPMENT DURING PREGNANCY AND
IN THE FIRST YEAR OF LIFE. THE
ENGAGING CHILD WELFARE SYSTEMS
AND YOUNG CHILDREN WORKSHOP IS A
WORKSHOP THAT WE ARE CURRENTLY
PLANNING, IT WILL BE A DAY AND A
HALF, HYBRID WORKSHOP THAT IS
SCHEDULED TO TAKE PLACE MAY 25
THROUGH 26, IN BETHESDA,
MARYLAND. THIS WORKSHOP IS
DESIGNED TO PROMOTE
COLLABORATION BETWEEN CHILD AND
FAMILY DEVELOPMENT RESEARCHERS
AND THE CHILD WELFARE SERVICE
DELIVERY SYSTEM. INVITED SPEAKER
THE CHILD WELFARE POLICY
PRACTICE RESEARCH COMMUNITIES
AND RELEVANT SCHOLARS WILL
DELIVER SEVERAL PRESENTATIONS TO
AN AUDIENCE OF CHILD AND FAMILY
RESEARCHERS FROM NIH, AS WELL AS
OTHER FEDERAL STATE AND
COMMUNITY ORGANIZATIONS. THE
PRESENTATIONS WILL PROVIDE AN
OVERVIEW OF THE CHILD WELFARE
SYSTEM AND EXPLORATION OF
OVERLAP BETWEEN CHILD WELFARE
SUBSTANCE USE AND CRIMINAL
JUSTICE SYSTEMS, A SUMMARY OF
THE SCIENTIFIC EVIDENCE ON THE
SEQUELAE OF MALTREATMENT AND
FOSTER CARE ON BRAIN AND
BEHAVIORAL DEVELOPMENT OF
EFFECTED CHILDREN, ON THE
FUNCTIONING AND PROCESSES OF
FAMILIES INVOLVED WITH THE CHILD
WELFARE SYSTEM AND ON THE
IMPACT OF CHILD WELFARE
SERVICES ON INVOLVED CHILDREN
AND FAMILIES. WE WILL ALSO
EXPLORE OR EXAMINE THE RACIAL
ETHNIC DISPARITIES AND SES IN
OTHER DISPARITIES IN THE CHILD
WELFARE SYSTEM. FINALLY A DISCUSSION
ON INTEGRATING CHILD FAMILY
DEVELOPMENT DEVELOPMENT. THE
WORKSHOP ENDS WITH DELINEATION
OF STRATEGIES TO PROMOTE
COLLABORATION BETWEEN FEDERAL
STATE AND NON-PROFIT ENTITIES
REGARDING WORKING WITH CHILD
WELFARE SYSTEMS TO ENHANCE CHILD
FAMILY DEVELOPMENT RESEARCH. SO
PLEASE BE ON THE LOOK OUT FOR
MORE INFORMATION. THAT WILL BE
SENT OUT LATER THIS MONTH ON THE
NIH LIST SERVE. I KNOW DURING
PREVIOUS MEETING LAST YEAR OR
SO, WE PROVIDE A LITTLE
BACKGROUND AND UPDATE ON HBCD.
I'M JUST PROVIDING A LITTLE
BACKGROUND TODAY TO SET THE
STAGE FOR BRIEF UPDATE I WILL
PROVIDE ABOUT THE HEALTHY BRAIN
AND CHILD DEVELOPMENT STUDY AS
WELL. SO JUST A REFRESHER,
HEALTHY BRAIN CHILD DEVELOPMENT
STUDY IS A PROSPECTIVE
LONGITUDINAL STUDY BEGINNING
JUST BEFORE BIRTH. DURING THE
STURDY INVESTIGATORS CONDUCT
ASSESSMENTS ON PRENATAL EXPOSURE
AND ENVIRONMENT AND ALSO USE
MULTI-MODAL ASSESSMENTS OF BRAIN
COGNITIVE EMOTIONAL DEVELOPMENT
FROM BIRTH TO CHILDHOOD. THESE
ARE CHARACTERIZED
NEURODEVELOPMENTAL TRAJECTORIES
FROM LARGE SAMPLES TO DETERMINE
SUBSTANCE EXPOSURE AND OTHER
ENVIRONMENTAL FACTORS AFFECT
DEVELOPMENTAL TRAJECTORIES. THE
HBCD HAVE 25 SITES, ON THE
BOTTOM RIGHT CORNER YOU SEE A
MAP OF THE STATES WHERE THESE
SITES ARE LOCATED AND ON THE
BOTTOM LEFT CORNER, BOTTOM RIGHT
CORNER AND ON THE LEFT CORNER
THERE IS BLOCKS DIFFERENT COLOR
BLOCKS AN THOSE ARE REFLECTING
THE VARIOUS INSTITUTES WITHIN
NIH THAT ALSO SUPPORT AND FUND
HBCD. THIS PROVIDES A LITTLE
BACK GROWN OF HBCD SAMPLING
CHARACTERISTICS. WE SUGGESTED
SIX FACTORS CRITICAL TO ESTIMATE
REPRESENTATIVENESS OF U.S. WOMEN
15-49 YEARS GAVE BIRTH IN THE
LAST 12 MONTHS. WE ALSO CONSIDER
RACE ETHNICITY EDUCATION
URBANICITY INCOME AND
DECLARATION INDEX. THESE FACTOR
ASKS TO ACHIEVE
REPRESENTATIVENESS TO IMMEDIATE
TARGET POPULATION COMMUNITIES AT
HBCD SITES AND THE ULTIMATE
TARGET POPULATION WHICH IS U.S.
POPULATION OF PREGNANT PEOPLE.
THE PROJECT THE SAMPLE SIZE,
7500 PREGNANT PERSONS WHICH
COMPRISES OF 300 WOMEN, IN EACH
OF THE 25 SITES. SAMPLING GOALS
WAS TO RECRUIT A STUDY
POPULATION THAT REFLECTS
BIRTHING WOMEN AGE 15 TO 49 IN
THE U.S. 25% OF REPORT
BIOMARKERS INDICATIVE OF
SUBSTANCE USE DURING PREGNANCY.
AND TO RECRUIT WOMEN SO MUCH OF
THOSE USE SUBSTANCES DURING
PREGNANCY TO ENSURE REASONABLE
BALANCE OF POTENTIAL CONFOUNDERS
AND IMPROVE THE INTERNAL
VALIDITY FOR SCIENTIFIC
QUESTIONS OF SEPSIS USE DURING
PREGNANCY AN CHILD DEVELOPMENT.
SO HERE IS AN ILLUSTRATION OF
THE TIME LINE OF ADVANCE FOR
HBCD STUDY. I DON'T -- WON'T GO
INTO DETAILS BUT WANT TO MENTION
THESE ASSESSMENTS ARE CONDUCTED
IN BOTH ENGLISH AND SPANISH AND
CODED FOR BIAS. JUST UPDATE IN
THIS AREA IS HBCD STUDY
FINALIZED PROTOCOL FOR FOUR --
FOR THE FIRST THREE VISIT VISIT.
THESE WILL REFLECT RECRUITMENT
IN THE SECOND TRIMESTER WHICH IS
VISIT ONE, 0 TO 1 MONTH WHICH IS
VISIT 2 AND 3 TO 9 MONTHS WHICH
IS VISIT 3. T ALL SITES HAVE
BEEN ACTIVELY ENGAGED IN
PILOTING THESE VISITS TO DATE
261 ADULTS AND 179 INFANTS HAVE
BEEN RECRUITED FOR PILOT
STUDIES. ON THE SITES WHO ARE
ENGAGED IN THE PILOT STUDIES ARE
EXPECTED TO PILOT ALL ELEMENTS
BEFORE MOVING INTO COHORT
RECRUITMENT EXPECTED TO TAKE
PLACE IN MAY AND JUNE OF THIS
YEAR. MEANWHILE THE HBCD DATA
COORDINATING CENTER CONTINUES TO
ESTABLISH TECHNOLOGY FOR DATA
COLLECTION, UPLOAD AND
HARMONIZATION. LATER THIS MONTH
APRIL 17 THROUGH 19 TRAIN THE
TRAINER EVENT WILL TAKE PLACE
AND THIS MEETING WILL BEGIN
PREPARING RESEARCH STAFF FOR
VISITS 4 THROUGH 7 OF THE STUDY
THE CONCLUSION, THANK YOU FOR
THE OPPORTUNITY ONCE AGAIN TO
PROVIDE NIDA UPDATES. HERE I
HAVE MY AS WELL AS MY
COLLEAGUE'S EMAIL ADDRESS. IF
YOU HAVE ANY QUESTIONS FEEL FREE
TO REACH OUT TO US. WE WILL BE
HAPPY TO CONNECT. HAVE A GREAT
DAY AND I HOPE YOU ENJOY THE
MEETING. THANK YOU.
>> ALL RIGHT. THANK YOU FOR VERY
INFORMATIVE PRESENTATIONS. AND
UPDATES ON RESEARCH SUPPORTED BY
NIH INSTITUTES. ZOOM
PARTICIPANTS NOW IT IS TIME TO
TURN ON YOUR CAMERAS. I KNOW IT
IS LATE IN THE DAY AFTER LONG
DAY. I HOPE WE STILL CAN SEE
EACH OTHER. FOR THOSE OF US WHO
WATCH ON VIDEOCAST, PLEASE
REMEMBER YOU CAN SUBMIT LIVE
FEEDBACK COMMENTS AND QUESTIONS
TO US AND DR. BILL DUNTY AND I
WILL DO THE BEST BRING YOUR
COMMENTS TO DISCUSSION TODAY.
WE ARE ALSO GOING TO PROVIDE ALL
YOUR QUESTIONS AN COMMENTS TO
ICCFASD MEMBERS AND TO INVITED
SPEAKERS AS WELL. WE WILL REALLY
-- WE WANT AND WE LOVE TO HEAR
FROM YOU. NOW I DON'T WANT THE
TAKE MUCH TIME SO NOW IT IS TIME
TO DISCUSS IN EACH PRESENTATIONS
WHAT QUESTIONS MEMBERS AN GUESTS
HAVE. PLEASE TURN ON YOUR
CAMERAS IF YOU HAVE DIFFICULTY
TO DO SO CONTACT ME OR ONE OF
OUR HOSTS.
>> TATIANA, I DON'T SEE
QUESTIONS FROM THE PUBLIC. AS OF
YET.
>> OKAY.
>> I CAN BEGIN WITH ONE QUESTION
WHICH I KEEP THINKING ABOUT TH
THAT. WE HAVE HERE TODAY VERY
INTERESTING PRESENTATION BY
CHRISTIE PETRENKO ABOUT
RESEARCH AND HOW SHE ENGAGES
COMMUNITY PEOPLE WITH THE FASD
AND CLEARANCE IN HER RESEARCH
WHEN SHE DEVELOPS NEW PROGRAMS.
SO MY QUESTION TO NIH IS
INSTITUTES WHAT EXPERIENCES THAT
YOU HAVE IN STUDIES HOW YOU SEE
THIS BECAUSE I DO SEE THIS AS A
TRENDS. WE DIDN'T HAVE THIS
TYPE OF RESEARCH 20 YEARS AGO.
WE HAVE IT NOW. THIS IS MY FIRST
QUESTION, AND RELATED TO THIS DO
YOU SEE THAT IT ALSO FEELS HOW
APPROACHES -- OUTCOMES IT IS
MORE FORMATIVE STAGE WHEN PEOPLE
DEVELOP PROJECT BUT I HAVEN'T
SEEN MUCH WHEN THEY IDENTIFY
WHAT IS THE OUTCOME, WHAT IS
YOUR TARGET,. SO JUST WANT TO
HAVE YOUR COMMENTS ON THIS. I
DON'T KNOW WHO WILL ANSWER.
BILL, TRACY. WE TRACY.
>> WHAT I WAS GOING TO SAY, WE
DO SEE THIS AS SOMETHING THAT IS
-- BEGINNING TO SEE MORE AND
MORE, AS YOU KNOW. FOR THE WORK
THAT IS SUPPORTED IN MY AND
CHRIS'S BRANCH DEVELOPMENTAL
SIDE OF THINGS, IT IS HARDER TO
BRING IN, EASY TO BRING IN
PARENTS AS AS PARTNERS, HARDER
TO ACTUALLY BRING IN THE
CHILDREN BECAUSE YOU RUN INTO
THE QUESTIONS OF WHAT THEY CAN
CONSENT TO AND NOT. WE NIMH
RECENTLY ISSUES AN RFA ON SOCIAL
MEDIA AND THERE WERE ENCOURAGING
THE USE OF YOUTH ADVISORY
BOARDS. WE WILL START TO SEE
THAT TYPE OF YOUTH ENGAGEMENT A
BIT MORE. IN THE FUTURE.
>> THANK YOU. I THINK MY
COMMENTS ARE SIMILAR TO JULIAS.
WE DEFINITELY ARE MOVING TOWARDS
ENCOURAGING IF NOT OUTRIGHT
REQUIRING INPUT AND PERSPECTIVES
OF PERSONS WITH LIVED
EXPERIENCES IN OUR RESEARCH. I
THINK FOR US AT NICHD, THAT ENDS
UP APPLYING MOST TO INDIVIDUALS
WITH RARE CONDITIONS OR WITH
INTELLECTUAL DEVELOPMENTAL
DISABILITIES OR PHYSICAL
DISABILITIES, BUT IT IS TRUE
ACROSS MOST OF NICHD PORTFOLIO.
REALLY TRYING TO MAKE SURE THAT
THE PERSPECTIVES OF THE PERSON'S
TO WHOM RESEARCH IS RELEVANT ARE
ACTUALLY HAVE INPUT INTO THE
QUESTIONS BEING ASKED.
>> THANK YOU, VERY MUCH. I'M
JUST TAKING -- I REMEMBER JAN I
THINK IS STILL WITH US, I
REMEMBER JAN'S COMMENT ON
OUTCOMES, WHAT IS OUTCOMES. HOW
OUTCOMES AND PROGRAMS NOT
NECESSARILY JUST RESEARCH
PROGRAMS BUT PROGRAMS AS WELL,
WHAT IS YOUR OUTCOME, IT MAY BE
IMPORTANT TO DISCUSS AND LOOK AT
COMMUNITY TO BE SURE WE TARGET
OUTCOMES THAT PEOPLE WANT US TO
TARGET AND NEED. ALL RIGHT.
FLOOR IS OPEN FOR OTHER
QUESTIONS AND COMMENTS. ABOUT
NIH --
>> TATIANA, JUST ONE COMMENT I
WOULD ADD. REGARDING YOUR
PREVIOUS QUESTION. I THINK SOME
OF THAT COMES FROM THE FUNDING
AGENCIES BUT I THINK SOME OF THE
DESIRE TO INCLUDE INDIVIDUALS
WITH FASD DEFINITELY COMES FROM
RESEARCHERS THEMSELVES. I WAS
PART OF A CONSORTIUM MEETING AND
THERE WERE MAYBE A DOZEN FASD
RESEARCHERS AT I BELIEVE
VANCOUVER MEETING, THEY INVITED
INDIVIDUALS WITH FASD TO COME
INTO THEIR CLOSED FACE TO SPACE
MEETING AND TELL THEM WHAT DO
YOU WANT US TO STUDY? AND REALLY
IT WAS JUST KIND OF A LISTENING
AND INFORMATION EXCHANGE
SESSION. SO I THINK WE ALSO HAVE
TO KEEP THE RESEARCHERS IN MIND
AND THEIR DESIRE TO INCLUDE
INDIVIDUALS IN THEIR RESEARCH.
>> I WOULD ADD TO THAT, BILL,
THEY HAVE BEEN INVITED BACK,
DOING IT AGAIN NEXT WEEK. AND
THEY HAVE BEEN GIVEN SOME
QUESTIONS AND SPECIFICALLY ABOUT
WHAT IS THE RESEARCH YOU WANT TO
SEE. THEY ARE WORKING ON A VERY
LONG LIST OF THINGS AND TRYING
TO PRIORITIZE OKAY CATEGORIES
WHERE WE WANT TO SEE FIRST. THAT
COVERS ALL THE AREAS FROM HEALTH
TO MENTAL HEALTH TO QUALITY OF
LIFE TO THE OTHER ISSUES THEY
ARE AWARE OF THAT CRIMINAL
JUSTICE WHICH IS A BIG ONE. SO
YEAH, WHAT -- THEY REALLY DO
WANT TO KNOW WHAT THIS COMMUNITY
WANTS. .
>> THANK YOU. I CAN SEE TRISH
POWELL.
>> YOU PARTLY ADDRESSED IT, I
WAS GOING TO ASK YOU WE HAVE
HEARD ABOUT THE SERVICES THAT
ARE NEEDED. AND WHAT PEOPLE
WOULD LIKE TO SEE HERE, WHAT
CANDIDATE IS PROVIDED THAT WE
DON'T HAVE AT THIS POINT, THOSE
KIND OF THINGS BUT FROM THE
RESEARCH PERSPECTIVE, THE NIH
RESEARCH PERSPECTIVE IT WOULD BE
GOOD TO HEAR A COUPLE OF THINGS
THAT PEOPLE WOULD REALLY LIKE
FOR US TO STUDY, THOSE $64,000
QUESTIONS IF WE CAN ANSWER WOULD
REALLY HELP PEOPLE IN THEIR
LIVES. .
>> I CAN'T SPEAK FOR THEM
BECAUSE THEY ARE PUTTING
TOGETHER THEIR LAUNDRY LIST
RIGHT NOW BUT THERE ARE LOT OF
THINGS THAT COME TO MIND. THERE
ARE A LOT OF JUST HEALTH ISSUES,
ONE OF THE THINGS I CAN SAY
BECAUSE THIS WAS JUST DISCUSSED
THE OTHER DAY THEY NEED A
LONGITUDINAL STUDY, QUESTION IS
WHY HAS NOBODY DONE THIS, WHY
DOES EVERYBODY STOP LOOKING AT
THIS REGARDLESS OF THE PIECE YOU
LOOK AT WHEN THEY HIT AGE OF
MAJORITY, WAIVER THAT MIGHT BE
WHERE YOU LIVE. NOBODY KNOWS
WHAT HAPPENS LONG TERM. THEY
HAVE IDEAS AND OWN EXPERIENCES
THEY KNOW BECAUSE THEY ARE SOME
UP INTO EARLY 50s WHAT
HAPPENS. BUT THE QUESTION
REALLY IS FROM A RESEARCH
PERSPECTIVE, WHAT IS THE LONG
TERM? IN ALL THOSE AREAS
BROADLY, WHAT DO WE KNOW, WHAT
DO WE DON'T KNOW, WHAT DO WE
THINK AND HOW DO WE PREPARE FOR
WHATEVER THOSE LONG TERM ISSUES
ARE BECAUSE THEY SEEM TO BE
SIGNIFICANT AND THERE ARE THINGS
I KNOW FROM THE HEALTH SURVEY
THAT THE GROUP DID, THERE ARE
SOME QUESTIONS THEY DIDN'T ASK
THEY SINCE HEARD FROM
SIGNIFICANT NUMBERS OF ADULTS,
THEY SHOULD HAVE ASKED. IN TERMS
OF HEALTH ISSUES ONE BEING IRON
LEVEL, THE IRON DEFICIENCY IS
VERY PREVALENT IN ADULTS AND
DOESN'T SEEM EASE I REMEDIABLE
WITH IRON SUPPLEMENT, IT DOESN'T
MAKE A DIFFERENCE SO WHAT CAUSES
THIS AND IF YOU LOOK AT THE
SEQUELAE OF EVENTS THAT HAPPENS
WHEN YOU HAVE LOW IRON OR
THYROID IS OFF, WHAT PART IS
WATCH FOR INSTANCE ONE OF THE
QUESTIONS IS HOW MANY THINGS
WRITTEN OFF AS MENTAL HEALTH
ISSUES ACTUALLY HAVE THEIR
GENESIS IN SOMETHING ELSE THAT
IS PHYSICAL THAT COULD BE
ADDRESSED WHICH MIGHT IMPROVE
MENTAL HEALTH SIGNIFICANTLY.
>> I THINK ANOTHER THING, FOR ME
AS AN INDIVIDUAL WHO YES I'M 34
BUT AS AN ADULT I'M TECHNICALLY
CONSIDERED A SENIOR WITHIN FASD
IN A WAY. AND SO THE THING IS,
IS THAT IF IN TERMS OF MEDICAL
SYSTEM OR IN TERMS OF FIGURING
OUT WHAT HAPPENS TO US AS WE GET
OLDER, THAT IS REALLY -- THOSE
QUESTIONS HAVE COME OUT OF THE
HEALTH SURVEY OF MILES, CJ AND
EMILY. SO IT IS A QUESTION OF
OKAY THIS SURVEY IS OUT THERE,
THE RESULTS HAVE BEEN GETTING
REPLICATED AND WE KNOW THIS
WHICH IS GREAT. BUT IF I CAN BE
BLOUNT, IF WE ARE COSTING SO
MUCH MONEY NOW, WHAT IS
POTENTIALLY GOING TO HAPPEN WHEN
WE DO HAVE MORE MEDICAL
PROCEDURES OR WE NEED MORE HELP?
OR WE DO HAVE MORE RISK OF
DEMENTIA, ALZHEIMER'S, LONG TERM
CARE, MY QUESTION THEN IS WHAT
THEN? IF I CAN.
>> THANK YOU, KAT. APPRECIATE
YOUR CANDOR.
>> AND YOUR BRILLIANT POINTS. I
MADE A MILLION NOTES DURING THIS
MEETING. ALL RIGHT. ANY
COMMENTS, ADDITIONAL COMMENTS ON
THE RESEARCH AND PRESENTATIONS?
>> I WOULD JUST ADD THAT I THINK
IT WAS JAN'S COMMENT ABOUT
-- LONGITUDINAL
STUDY, I WANT TO POINT OUT THAT
NIAAA HAS FUNDED A I GUESS A
HEALTH OUTCOME IN ADULTS STUDY
THAT WAS LED BY CLAIRE COLE AND
JOANNE WINEBERG AS PART OF CFAS
4 PROPOSAL. THAT IS I BELIEVE IN
A NO COST EXTENSION BUT
PUBLICATIONS ARE JUST STARTING
TO COME OUT FROM THAT. THEY ARE
ALSO CONTINUING THOSE STUDIES TO
NOW FOCUS ON THE IMMUNE SYSTEM
AND ENDOCRINE FUNCTION AND HOW
THAT RELATES TO HEALTH OUTCOMES
AND MENTAL HEALTH OUTCOMES AS
WELL. THAT STUDY WAS JUST FUNDED
LAST FISCAL YEAR.
>> THANK YOU, BILL, I'M VERY
AWARE OF THAT. VERY AWAREST NEED
FOR THAT. BUT I ALSO WOULD LIKE
-- PIE IN THE SKY BUT
LONGITUDINALLY I THINK WHAT THE
GROUP AND MANY FAMILIES ARE
SAYING IS WHEN THEY SAY
LONGITUDINAL WE ARE NOT TALKING
FIVE OR TEN YEARS, WE ARE LARK
GROUP GET AS MANY AS YOU CAN AND
FOLLOW THEM FROM -- AND IT WOULD
BE INTERESTING ALSO TO RECRUIT
CHILDREN AND START FOLLOWING
FROM A VERY YOUNG AGE RIGHT
THROUGH THE LIFE SPAN. THERE
HAVE BEEN THE NURSES STUDIES AND
THINGS THAT HAVE DONE AND IT
FOLLOWED LARGE GROUPS FOR MANY,
MANY YEARS AND IT MIGHT BE
SOMETHING TO DO WITH THIS
BECAUSE REALISTICALLY THERE IS
NOT A LOT REALLY KNOWN ALMOST
NOTHING WHERE THIS GOES LONG
TERM. WHO FALLS OFF THE FACE OF
THE EARTH? ARE THEY FUNCTIONING
WELL AND JUST DISAPPEAR? OR DO
THEY DIE REALLY EARLY? WHAT
HAPPENED? IF YOU WANTED THE
COMPLETE PICTURE IT'S PROBABLY
THE ONLY WAY TO GET IT IS TO
REALLY LOOK AT IT.
>> I WILL ADD ANOTHER STUDY
POPPED INTO MIND, THAT WAS SPIN
OFF OF THE PAST IN NETWORK
STUDIES SO THIS WAS A STUDY AT
THE IMPACT OF PRE-NATAL ALCOHOL
AND SIDS AND STILLBIRTH, THAT
STUDY WAS DONE IN SOUTH AFRICA
AND NORTHERN PLAINS, SUPPORTED
BY NIAAA, AND NICHD. AND THAT
WAS A STUDY FOCUSED ON
STILLBIRTH AND SIDS. HOWEVER,
INVESTIGATORS PUT IN ADDITIONAL
GRANT PROPOSALS AND HAVE BEEN
FUNDED TO NOW FOLLOW THOSE IN
WHAT WE ARE INFANTS OR EVEN
BEFORE THAT INTO NOW IN THEIR
EARLY TEENS. SOME OF THOSE
STUDIES ARE BEING DONE, THEY MAY
NOT BE AT SCALE JAN THAT WHAT
YOU ARE TALKING ABOUT BUT I JUST
WANTED TO MAKE FOLKS AWARE THOSE
STUDIES.
>> I ALSO THOUGHT ONE OF
COMMENTS WHICH WAS MADE TODAY
THAT PROVIDED INTERVENTION FOR
FASD AND PROVIDES SUPPORT, IT IS
PREVENTION AND I THINK THIS
MESSAGE HAS BEEN RECEIVED WELL.
AND HAS BEEN DISCUSSED AND
DEFINITELY UNDERSTANDING OF
NEEDS WHICH HASN'T BEEN DONE
VERY MUCH IN RECENT. ALL RIGHT.
WE HAVE ONE MINUTE TO -- IF YOU
HAVE ANY ADDITIONAL QUESTIONS TO
NIH, IF NOT, WE CAN MOVE TO
GENERAL DISCUSSION. SO NOW WE
WILL OPEN TO QUESTIONS AND
COMMENTS RELATED TO ALL MEETING
TODAY. WE HAD VERY INFORMATIVE,
VERY INTERESTING MEETING AND
AGAIN THANK YOU SO MUCH FOR YOUR
PARTICIPATION. QUESTIONS AND
COMMENTS, FLOOR IS OPEN.
>> JUST A COMMENT. WE DID
RECEIVE SEVERAL COMMENTS FROM
THE PUBLIC SHARING SIMILAR
STORIES AS TO WHAT THEY HEARD ON
THE PANEL. DISCUSSION AND AGAIN
WE WILL SHARE THOSE WITH THE
PANELISTS AND WITH THE AGENCY
MEMBERS OFFLINE. I DO WANT TO
ACKNOWLEDGE THAT FOR THE PUBLIC
>> THANK YOU VERY MUCH.
>> YOU JUST WENT ON MUTE.
>> THANK YOU, TRISH. IT IS LATE
IN THE DAY. I JUST ALSO WANTED
TO TELL QUESTIONS AND COMMENTS
FROM PUBLIC AND WANTED TO
MENTION WE HAD SEVERAL COMMENTS
TO THANK PARTICIPANTS, TO THANK
PANEL AND EACH SPEAKERS TODAY.
TO SAY THANK YOU TO PARENTS WHO
PARENTS PATED TODAY AND SAYING
IT HAS BEEN VERY, VERY HELPFUL.
SEVERAL. WE WILL SHARE COMMENTS
WITH SPEAKERS AND WITH MEMBERS.
ALL RIGHT.
>> TATIANA, THIS IS AMANDA, I
JUST -- I WANT TO ECHO THE
SENTIMENTS OF THE PUBLIC TO SAY
THANK YOU TO THE PANEL MEMBERS
ESPECIALLY THOSE WITH LIVED
EXPERIENCE AND PARENTS OF THOSE
WITH LIVED EXPERIENCE. THAT IS
SO IT WAS REALLY MEANINGFUL AND
INFORMATIVE AND I REALLY
APPRECIATE YOUR WILLINGNESS TO
SHARE YOUR EXPERIENCES WITH US.
JUST A NOTE, I HAVE A SON WITH A
SERIOUS MENTAL ILLNESS AND I SEE
A LOT OF PARALLELS TO THINGS YOU
ARE EXPERIENCING: AND I WAS
JUST TRYING TO REFLECT ON THAT,
WHY THAT IS. I THINK IN PART IT
IS BECAUSE IT IS OFTEN AN
INVISIBLE DISABILITY. AND SO I
BRING THAT UP ONLY BECAUSE I
THINK THAT THERE IS SOMETHING TO
LEARN MAYBE TOGETHER ACROSS
DIFFERENT POPULATIONS, TO
UNDERSTAND HOW DO WE ADDRESS
INVISIBLE DISABILITIES MORE
CLEARLY AND GET THEM THE
ATTENTION THEY DESERVE AND HAVE
PEOPLE WHO REALLY DON'T
UNDERSTAND THEM, LEARN TO
UNDERSTAND THEM. MY OTHER
COMMENT WAS, IS, THAT NIDLER HAS
FORECASTED A UPCOMING GRANT
OPPORTUNITY FOR PEOPLE WHO ARE
RESEARCHERS AND THE TITLE OF IT,
I GOT TO READ IT TO MAKE SURE I
GET IT RIGHT. BUT THE TITLE IS
IMPROVING METHODS FOR CONDUCTING
RESEARCH WITH PEOPLE, WITH
COGNITIVE DISABILITIES AND
VIRTUAL ENVIRONMENTS. AND THIS
IS REALLY COMING OUT OF WHAT --
WHERE WE HAVE SEEN RESEARCHERS
HAVING TO PIVOT TO COLLECT DATA
REMOTELY, AND NOT ALWAYS BEING
ABLE TO INCLUDE PEOPLE AS WE
KNOW, WITH COGNITIVE
DISABILITIES VERY WELL. SO WE
WANT TO ENCOURAGE PEOPLE TO
DEVELOP METHODS AND TEST THEM
FOR THEIR RIGOR AND
EFFECTIVENESS AND INCLUDING
PEOPLE BEYOND JUST THOSE WITH
MILD COGNITIVE DISABILITIES BUT
SO THAT WE CAN MAKE SURE THAT
EVERYBODY IS INCLUDED. THAT
SHOULD BE PUBLISHED ANY DAY NOW
IT WAS FORECAST TO BE OUT ON THE
THIRD I THINK BUT I THINK IT IS
A WONDERFUL OPPORTUNITY TO
ADDRESS THE NEEDS OF THE
POPULATION OF PEOPLE WITH FASD.
IT IS CERTAINLY OPEN TO THAT,
THAT SPECIFIC POPULATION AS A
GROUP SO ENCOURAGE PEOPLE TO
APPLY. THANK YOU.
>> THANK YOU, AMANDA FOR YOUR
COMMENT. THANK YOU. ALL RIGHT
TRISH POWELL I CAN SEE YOUR
HAND. GO AHEAD.
>> PEOPLE ARE SPARKING ALL KINDS
OF THOUGHTS JUST BUILDING OFF
ONE THING AMANDA JUST SAID, IT
GOES BACK TO SOMETHING THAT BOTH
KAT AND JAN EMPHASIZED. THIS
IDEA OF INVISIBLE DISABILITIES.
AND IT IS EVEN HARDER THAN
WHETHER YOU SEE IT OR NOT
BECAUSE AS JAN AND KAT POINTED
OUT ON ANY GIVEN DAY IT CAN LOOK
DIFFERENT. AND I THINK THAT'S
OOH SOMETHING THAT SOMETIMES WE
IN THE HEALTHCARE SYSTEM, AND
SOCIETY AT LARGE DISMISS. THAT
IF ONE DAY YOU ARE CAPABLE OF
DOING SOMETHING AND ON THE NEXT
YOU ARE NOT. THERE'S NOT AN
UNDERSTANDING OF THAT. SO I
THINK THAT IS SOMETHING TO KEEP
IN MIND AS WELL ON AS WE MOVE
FORWARD.
>> IF I CAN, RESPONSE TO THAT.
IT DOES LOOK DIFFERENT EVERY
SINGLE DAY. BUT I WANT TO ALSO
KIND OF CHALLENGE THAT IN A WAY
FASD ISN'T -- IT IS BUT IT ISN'T
INVISIBLE BECAUSE THOSE WHO ARE
AREN'T IT EVERY DAY, THEY SEE
IT. THOSE WHO WORK WITH SOMEONE
WHO HAS FASD, THEY ARE
EXPERIENCING FASD THROUGH THAT
PERSON. SO IT IS BUT IT ISN'T.
JUST I LIKE TO CHALLENGE
PEOPLE'S THINKING.
>> THAT IS WHY YOU ARE HERE.
THANK YOU.
>> I'M GOING TO -- THIS IS JUST
A REALLY SMALL GROUP LEFT HERE,
I THINK I'M GOING TO SAY --
EXPRESS A PROBLEM WITH ONE OF
THE REASONS WHY SOME OF THE
COMMUNITIES HAVE NOT WORKED WELL
WITH THE FASD COMMUNITY, I WILL
SPEAK TO A DIRECT QUOTE, MADE
QUITE A FEW YEARS, SO I CAN
SAFELY SAY IT, WHEN IT WAS
STRONGLY ADVISED THAT THE FASD
COMMUNITY AUTISM COMMUNITY WORK
TOGETHER HERE AND THE DIRECT
DOTE QUOTE FROM THE PERSON IN
CHARGE OF THE AUTISM COMMUNITY
IS WHEN THEY SAID NO, THEY SAID
AFTER ALL, WE DIDN'T CAUSE THIS
AND IT GOES BACK TO THAT STIGMA
THING. THAT IS A PERVASIVE PIECE
OUT THERE THAT WE STILL SEE ALL
THE TIME. AND WHEN THERE IS A
KNOWN CAUSE THAT IS, QUOTE, 100%
PREVENTABLE A TERM PERSONALLY I
DISLIKE INTENSITY, THERE IS A
PROBLEM WITH HOW PEOPLE INTERACT
WITH THIS GROUP. WITH THE
FAMILIES, AND THE INDIVIDUALS.
IT GOES BACK TO THAT 100%
PREVENTABLE CAUSED BY EQUALS
LESS THAN YOU DID IT SO YOU
GUYS. IT IS KIND OF THE VISIT
THE SINS OF THE MOTHER ON THE
CHILD GETS TWISTED AND TURNED
AND BECOMES A MUCH BIGGER ISSUE
THAN JUST IT BEING INVISIBLE. SO
JUST SOMETHING TO PUT OUT THERE
FOR THE THOUGHT, BECAUSE I
AGREE, THERE IS SIGNIFICANT --
JUSTIN INDICATED HE HAS BIPOLAR
DISORDER AND HALF DOZEN OTHER
THINGS AND LITERALLY EVERY ADULT
I KNOW HAS ANXIETY AND LARGE
NUMBERS HAVE DEPRESSI DEPRESSIO
SIGNIFICANT MENTAL HEALTH STUFF
BUT WHEN YOU TRY TO HAVE
EVERYBODY WORK TOGETHER, THEY
JUST SOMETHING CHANGES AS SOON
AS PEOPLE HEAR THE WORDS FASD.
IT IS STILL HAPPENING. IT IS
NOT GOING AWAY. I WOULD JUST
REALLY LIKE US ALL TO PUT A
BUNCH OF PEOPLE IN A ROOM, LOCK
THE DOORS AND SAY LET'S FIGURE
OUT NOBODY LEAVES UNTIL WE COME
UP WITH A BETTER WAY TO ADDRESS
ALL OF THIS. BECAUSE WE HAVEN'T
DONE A VERY GOOD JOB. WE MEAN
WELL, EVERYBODY DOES BUT WE
HAVEN'T DONE IT. SO WHAT ARE WE
DOING WRONG? WHAT DO WE NEED TO
CHANGE? HOW DO WE DO IT BETTER?
NOT EVEN RIGHT, HOW DO WE JUST
DO IT BETTER SO WE EVENTUALLY
GET TO RIGHT? I WILL CUT OUT
BECAUSE IT IS JUST ONE OF MY
SOAP BOX.
>> THANK YOU, GOOD POINT. I
COMPLETELY AGREE WE NEED TO SEE
HOW WE HAVE BEEN DOING THIS AND
WHAT WE NEED TO DO DIFFERENTLY
AND MORE EFFECTIVELY. TRACY.
YOUR TURN.
>> MY COMMENT PICKS UP ON JAN'S
A LITTLE BIT AND ALSO ON SOME
CONVERSATION EARLIER THIS
MORNING. I HEARD SEVERAL PEOPLE
COMMENT EARLIER THIS MORNING
ABOUT HOW THERE IS A NEED FOR
FAS SPECIFIC EDUCATION, FAS
SPECIFIC RESOURCES, FAS SPECIFIC
TRAINING. AND HOW THAT PROGRAM
THAT WERE MORE BROADLY TARGETED
TOWARDS WHETHER THEY HAPPEN TO
BE COGNITIVE, DISABILITIES OR
MENTAL HEALTH ISSUES. WEREN'T
MEETING PEOPLE'S NEEDS. I GUESS
MY COMMENT HERE IS GOING TO BE
LESS WEARING MY NIH HAT AND MORE
WEARING MY FORMER PRIMARY CARE
PROVIDER HAT. I DON'T THINK
IT'S NECESSARILY AN EITHER/OR
CHOICE. I THINK THAT THERE IS
VALUE TO BOTH AND I GUESS MY
PLEA HERE IS THAT WHILE WE DO
WORK ON FAS SPECIFIC EDUCATIONAL
PROGRAMS OR OUTREACH, THAT WE
DON'T LOSE SIGHT OF THE VALUE OF
INCORPORATING FAS INTO PERHAPS
LARGER OR MORE BROADLY BASED
PROGRAMS. BECAUSE I'M ALSO
REFLECTING ONE OF THE COMMENTS
IN THE CHAT THIS MORNING ABOUT
HOW PEOPLE WERE SAYING THEY WERE
HAVING A HARD TIME GETTING
PRIMARY CARE PROVIDERS TO ENROLL
OR PARTICIPATE IN FAS SPECIFIC
EFFORTS. I THINK PRIMARY CARE
PROVIDERS NOW AND MANY OTHER
TYPES OF CLINICAL PROVIDERS ARE
OVEREXTENDED AND UNDERRESOURCED
I HI THE MORE WE CAN ALSO
INCORPORATE FAS INFORMATION INTO
BIGGER PROGRAMS IN ADDITION TO
FAS EFFORTS, THERE'S BENEFITS TO
EVERYBODY.
>> THANK YOU, THANK YOU, TRACY.
WELL TAKEN POINT. WE HAVE
DISCUSSION, WE NEED TO CONTINUE
TO SEE HOW WE CAN INTEGRATE FASD
WITH A LITTLE OTHER DISABILITIES
BUT AT THE SAME TIME WE DO
UNDERSTAND. AND THERE IS
ACTUALLY THIS APPROACH PERSON
CENTERED PRACTICE WHICH HAS BEEN
EMPHASIZED BY ADMINISTRATION
TORR COMMUNITY LIVING, WE
DISCUSS THIS WITH THIS COMMUNITY
REPRESENTATIVE BUT THE MODEL HAS
SPOKEN ABOUT THAT. IT IS EXACTLY
WHAT WE ARE LOOKING AT. AND WE
JUST NEED TO BE SURE IT IS
REALLY IMPLEMENTED. WE HAVE TWO
HANDS. I KNOW BILL DUNTY HAS HAD
HAND THEN WE HAVE JON. BILL,
YOUR ROLE.
>> I WAS JUST GOING TO READ TWO
COMMENTS THAT CAME IN FROM THE
PUBLIC. WE MAY, MAY NOT NEED TO
DISCUSS THEM BUT I DO JUST WANT
TO MAKE THEM PART OF THE RECORD
IT WAS COMMENT FROM A RESEARCH
PERSPECTIVE, IT WAS IMPERATIVE
TO TRANSLATE FINDINGS INTO LAY
LANGUAGE. I THINK WE WOULD ALL
AGREE ON THAT. AND THEN ALSO
ANOTHER COMMENT FASD IS A SOCIAL
JUSTICE ISSUE. BECAUSE IT IS NOT
CONSIDERED UNDER U.S. LAW. AS A
DISABILITY. OF I WANT TO MAKE
THAT COMMENT.
>> JON.
>> I AM PRIMARY PREVENTION GUY
HERE FROM SAMHSA. I HAVE BEEN IN
THIS FIELD NOW SINCE 2008. WHEN
I LISTEN TO ALL THE THINGS WE
ARE DOING, AND THE RESISTANCE
THAT WE GET FROM BEHAVIORAL
HEALTH AND COMMUNITY ABOUT FASD
AND THE STIGMA AROUND WHY A
WOMAN WOULD CHOOSE TO DRINK
WHILE PREGNANT. I THINK THAT ONE
OF THE MESSAGES THAT HAS TO GO
OUT THERE IS THAT WE ARE DOING
SOMETHING ABOUT DRINKING WHILE
PREGNANT. THERE ARE PROGRAMS,
THINGS OUT THERE TO WARN THEM.
AND SAMHSA IN PREVENTION, I
BROUGHT THIS UP BEFORE WHERE WE
COULD HAVE THEM ONE OF THE
QUESTIONS THERE FOR IMMUNITIES
AROUND -- COMMUNITIES AROUND
UNDERAGE DRINKING AND DATE RAPE
AND SCHOOL SKIPPING SCHOOL AND
PREGNANCIES, AND THE LIKE. BUT
IT HAS EVEN BEEN DIFFICULT FOR
CSAB TO GRASP THE IDEA OF HAVING
FASD AS A RISK FACTOR IN OUR
UNDERAGE PROGRAMS OR UNDERAGE
YOUTH FROM 12 TO 25-YEAR-OLD.
THERE IS NO WARNING. ABSOLUTELY
NOTHING ABOUT DRINKING AND BEING
PREGNANT. SO WHEN PUBLIC SEES
ALL THESE THINGS THAT WE ARE
DOING ABOUT FASD IN MY OPINION
AROUND TREATMENT THEY ARE ASKING
WELL, YOU DON'T WANT TO BLAME
THE PERSON FOR DRINKING WHILE
SHE WAS PREGNANT. SHE DIDN'T
KNOW BETTER. WE KNOW THAT NO NO.
BUT THEY ALSO THINK IN THEIR
HEADS, WELL, THAT'S NOT ALL I
WANT TO HEAR, I WANT TO HEAR
WHAT ARE YOU GOING TO DO ABOUT
WHAT HAPPENS IN THE FUTURE WHEN
PEOPLE ARE DRINKING WHILE
PREGNANT? AND WE HAVE VERY
LITTLE AROUND THAT. WE DON'T GET
INTO THAT VERY MUCH. AT LEAST
NOT IN (INAUDIBLE) AND I
UNDERSTAND WHY. BUT COMING FROM
SAMHSA AND REPRESENTING CSAB I
HAVE TO BRING THAT PERSPECTIVE
UP AROUND PRIMARY PREVENTION AND
WHAT IT IS TO -- WARNINGS TO
WOMEN AND PHYSICIANS ABOUT
DISCUSSIONS WITH WOMEN WHEN THEY
ARE IN FOR PRIMARY CARE AROUND
ALCOHOL AND DRINKING. THERE HAVE
BEEN SOME ATTEMPTS AROUND IT BUT
IT REALLY HASN'T HAPPENED. SO
WHEN WE TALK ABOUT PREVENTION
EARLIER I WAS THINKING WELL,
WHAT ARE THEY TRYING TO PREVENT
WHAT IS THE DIFFERENCE BETWEEN
PREVENTION AND INTERVENTION?
WELL, YOU HAVE PRIMARY
PREVENTION, SECONDARY
PREVENTION, ALL THREE YOU CAN
HAVE AN INTERVENTION BUT TO
PREVENT PRIMARILY IS TO PREVENT
SOMETHING FROM OCCURRING IN THE
FIRST PLACE. I THINK WE ALSO
NEED TO ALSO UNDERSTAND THAT IS
A VERY IMPORTANT MESSAGE FOR
THIS GROUP TO CARRY. BECAUSE IT
DISPELS SOME OF THE STIGMA AND
MAKES PEOPLE UNDERSTAND THERE IS
ALSO AN EFFORT TO STOP THE
NUMBER OF ALCOHOL EXPOSED
PREGNANCIES IN THE FUTURE.
THAT'S ALL I HAVE TO SAY.
>> THANK YOU. THIS MEETING
FOCUS MORE ON SERVICES AND
SUPPORTS FOR PEOPLE WI BUT WE DO
UNDERSTAND IT IS VERY IMPORTANT
AND WILL GET BACK TO YOU. WE
HAVE A COUPLE OF COMMENTS BEFORE
WE FINISH. I ALSO WANT TO GIVE
TIME TO DR. TRISH POWELL TO MAKE
CONCLUSION. BEFORE GO TO THAT I
WANT TO ALSO SAY HAVING THIS
MEETING AND BEING ABLE TO HAVE
PRIVILEGE TO HEAR FROM EFFORTS
IS IT TAKES A SIGNIFICANT
EFFORT. AND THIS WOULD NOT BE
POSSIBLE WITHOUT HELP. I THINK
WE ALL RECOGNIZE IT AND IT IS
EASY TO FORGET BUT IT IS REALLY
VERY IMPORTANT POINT. WHATEVER
WE DO WITH OUR PROGRAMS TO IN
VOLVE COMMUNITY THE ENGAGED RESEARCH,
AND PRACTICE, WE NEED TO
UNDERSTAND IT WILL TAKE MORE
EFFORT. IT WILL. IT IS NOT AS
SIMPLE AS WE CAN TELL IT. IT IS
SOMETHING WHICH WE HAVE TO DO.
AND BECAUSE AFTER THAT WE HAVE
TO HEAR AND WHICH HELPS US TO
HAVE SERVICES AND PROGRAMS MORE
EFFICIENT. I WANT TO MOVE TO
COMMENTS. AMANDA WITH DO WE HAVE
A COMMENT, I HEAR YOU WOULD LIKE
TO SPEAK.
>> I WANT TO QUICKLY ADDRESS THE
IDEA THAT THE COMMENT ABOUT
SOCIAL JUSTICE AND THE IDEA THAT
FASD IS NOT CONSIDERED A
DISABILITY BY LAW. I WOULD
ACTUALLY DISAGREE WITH THAT
BECAUSE THE ADA SAYS THAT A
DISABILITY IS A PERSON WHO HAS A
PHYSICAL OR MENTAL IMPAIRMENT
THAT SUBSTANTIALLY LIMITS ONE OR
MORE MAJOR LIFE ACTIVITY. I
THINK FASD EASILY FALLS INTO
THAT CATEGORY FOR MOST PEOPLE IF
NOT ALL PEOPLE WITH FASD. THE
SECOND PART OF THE DEFINITION IS
THAT IT INCLUDES PEOPLE WHO HAVE
A RECORD OF SUCH IMPAIRMENT. SO
EVEN IF YOU DON'T DEFINE OR YOU
DON'T DEFINE YOURSELF AS HAVING
A DISABILITY YOU STILL QUALIFY
UNDER THE ADA AS HAVING A
DISABILITY AND THE PROTECTIONS
OF THE ADA IF SOMEONE ELSE
CONSIDERS YOU TO HAVE THAT
LIMITATION OR LIMITATIONS
RELATED TO YOUR LIFE ACTIVITIES
SO I THINK IT IS COVERED IN TWO
WAYS. I WANT TO SAY IT IS
IMPORTANT THAT WE MAKE THAT
KNOWN. THE ADA IS SUCH AN
IMPORTANT LAW. IT IS NOT I THINK
A LOT OF PEOPLE ARE UNCLEAR
ABOUT WHAT IS COVERED UNDER THE
ADA. I WANT ALL PEOPLE WITH FASD
TO KNOW THAT THEY ARE COVERED BY
THAT. AND IF YOU HAVE QUESTIONS
I WOULD BE HAPPEN MY TO HAVE
CONVERSATION ABOUT IT. OWN IT.
USE IT. EVERYBODY WITH A
DISABILITY SHOULD BENEFIT FROM
IT.
>> I THINK IT IS VERY IMPORTANT
POINT. MAYBE WE CAN FOLLOW-UP ON
THAT AND SEE WHAT WE CAN DO TO
HELP. PEOPLE BECAUSE WE HAVE
HEARD SO MANY TIMES FROM MANY
PEOPLE THEY HAVE DIFFICULTIES TO
GET SERVICES. THANK YOU. ANY
QUESTIONS AN COMMENTS FROM VIDEO
CAST? ALL RIGHT. DR. TRISH
POWELL, TIME FOR CONCLUSION. AND
I ALSO JUST BACK UP ONE SECOND
TO TELL WE ARE GOING TO
FOLLOW-UP WITH VIDEOCAST WE AS
COMMITTEE WE ARE ALWAYS FOLLOW
UP ON OUR MEETINGS TO TAKE BACK
REPORTS TO DISCUSS AND TO LOOK
WHAT WE CAN DO TO MOVE FORWA FO.
WITH SOME IMPROVEMENTS.
>> THANKS. WE ARE ALMOST AT THE
END OF OUR MEETING SO I WANT TO
CONTINUE WHO ARE INTERESTED IN
THIS TOPIC. WHO CARE ABOUT THIS.
WHO CARE ABOUT MOVING US
FORWARD. THANK YOU FOR
LISTENING, THANK YOU FOR YOUR
INPUT AND AS TATIANA SAID WE ARE
ALWAYS HERE IN THIS MEETING SO
PLEASE CONTACT US IF YOU HAVE
THOUGHTS. I WANT TO THANK ALL
THE SPEAKERS, I WANT TO THEY CAN
OUR FEDERAL MEMBERS WHO SHARE
THEIR AGENCY UPDATES. AND I WANT
A ESPECIALLY THANK THE PANEL
MEMBERS I KNOW YOUR ASK ON LOT
OF OCCASIONS TO SPEAK TO VARIOUS
AUDIENCES TO SHARE, TO PROVIDE
YOUR LIVED EXPERIENCES. I KNOW
THAT THAT'S TAXING BUT WE REALLY
APPRECIATE THAT YOU CAME HERE
TODAY, YOU ARE WILLING TO SHARE
AND I WANT TO LET YOU KNOW THAT
WE ARE TRULY LISTENING. WE ARE
LISTENING ALSO TO THE
RECOMMENDATIONS TO TRY AND
BROADEN MEMBERSHIP IN THE
ICCFASD WITH OTHER FEDERAL
PARTNERS. SOME OF WHOM WE HAVE
HAD IN THE PAST. SO WE WILL
CONTINUE TO DO THAT. SO ONCE
AGAIN, THANK YOU TO ALL, THANK
YOU ESPECIALLY TO TATIANA, SHE
PUT TOGETHER THIS MEETING. SHE
RECRUITED OUR SPEAKERS. SHE'S
HANDLED THIS BRILLIANTLY AND I
THINK AS A RESULT WE HAD A VERY
SUCCESSFUL PUBLIC MEETING OF
2023 SO TATIANA, THANKS TO
YOU. THANKS TO ALL OF YOU AND WE
LOOK FORWARD TO HEARING FROM
YOU.
>> THANK YOU ALL. THANK YOU.
THANK YOU SO MUCH.