NATIONAL ORGANIZATION ON FETAL ALCOHOL SYNDROME (NOFAS)

HAVE WORN MANY HATS

FORMER FIRST LADY OF MINNESOTA

APPOINTED HENNEPIN COUNTY JUDICIAL OFFICER IN 1995

GOVERNOR’S FASD TASKFORCE –JULY 97 – DEC 98

2000 – FORMED MOFAS (NOW PROOF ALLIANCE)

2005 - HC FASD PROGRAM – PROJECT DIRECTOR

2006 - ICCFASD FASD JUSTICE WORK GROUP

2018 – NOFAS BOARD; CHAIR LEGISLATIVE & POLICY COMMITTEE

NOFAS POLICY & TRAINING CENTER

PURPOSE:

LEAD THE EFFORT FOR THE “WIDE” FASD COMMUNITY TO ACHIEVE DESIRABLE PUBLIC POLICY OUTCOMES ON BEHALF OF INDIVIDUALS LIVING WITH FASD AND THEIR FAMILIES.

GOALS:

• DEVELOP AND DISSEMINATE A FASD PUBLIC POLICY AGENDA AND CALL TO ACTION

• PURSUE PUBLIC POLICY OUTCOMES THAT BENEFIT THE FASD FIELD ON GLOBAL, FEDERAL, STATE AND LOCAL LEVELS

• ESTABLISH AND MAINTAIN PRODUCTIVE RELATIONSHIPS WITH KEY PARTNERS, PUBLIC OFFICIALS AND THEIR STAFF

• BUILD A COALITION OF KNOWLEDGEABLE, ACTIVE POLICY LEADERS

NOFAS POLICY TEAM

• TOM DONALDSON, PRESIDENT OF NOFAS

• KATE BOYCE, CHAIR OF NOFAS BOARD

• SUSAN CARLSON, CHAIR OF LEGISLATION & POLICY COMMITTEE

• MIKE “KEAWE” ANDERSON, NOFAS BOARD, GOVERNMENT RELATIONS, ADVOCATE

• KATHRYN SHEAFLORIDA CENTER FOR EARLY CHILDHOOD, NOFAS BOARD

• NATHAN BERGERBEST, FORMER DEPUTY CHIEF OF STAFF, SENATOR MURKOWSKI

• JENN WISDAHL, NOFAS POLICY & TRAINING COORDINATOR

MONTHLY FORUM

THE FORUM IS A REGULARLY-SCHEDULED MONTHLY VIRTUAL MEETING (HELD THE LAST WEDNESDAY OF EACH MONTH AT 2:00 P.M. ET) TO BRIEF ADVOCATES AND GUIDE POLICY OUTREACH.

MONTHLY AGENDA

• CONGRESSIONAL UPDATE

• FEDERAL AGENCY UPDATE

• FASD LEGISLATIVE STRATEGY AND STATUS

• TRAINING, TIPS, AND MATERIALS FOR ADVOCATES

• COORDINATION OF OUTREACH

• Q&A

WHY DO A FEDERAL BILL?

IF YOU DON’T KNOW WHERE YOU ARE GOING, ANY ROAD WILL GET YOU THERE.

• Lack of public and policymakers understanding of the public health crisis of FASD

• Federal resources have declined

• FASD authorization language has expired

• No federal agenda on FASD

• Many barriers to prevention, identification & intervention – need national leadership and resources

BUILDING A NATIONAL FASD AGENDA AND SUPPORT IN OUR COMMUNTIES

FOUNDATION: FASD UNDERSTANDING & AWARENESS BY POLICYMAKERS & PUBLIC

BUILD UP ON THAT SUCCESS: PUBLIC POLICIES THAT “SYSTEMIZE” FASD

(DISABILITY ELIGIBILITY CATEGORIES, IDEA, SSDI, ETC.)

ROOF – FASD UNDERSTOOD AND THOSE IMPACTED SUPPORTED; PREVENTION ACCEPTED, SUPPORTED & WIDELY UNDERSTOOD BY OUR COMMUNITIES

”Advancing FASD Research, Prevention & Services Act” is the foundation for a national FASD Agenda.

FASD COMMUNITY

• RESEARCHERS

• FAMILIES AND THOSE WITH FASD

• ADVOCATES

• PROFESSIONALS

• GOVERNMENT

• COMMUNITY

• POLICYMAKERS

WHAT DO PARENTS/ADVOCATES WANT?

HELP

UNDERSTANDING

AWARENESS

RESOURCES

I’m doing my part, I just need help from the community. SOURCE: Petrenko CLM, Alto ME, Hart AR, Freeze SM, Cole LL

WHY SHOULD I SUPPORT THE “ADVANCING FASD RESEARCH, PREVENTION & SERVICES ACT”

• RESOURCES TO STATES TO ADDRESS FASD PREVENTION, IDENTIFICATION AND INTERVENTION

• RESOURCES FOR BEST PRACTICES AND COMMUNITY PARTNERSHIPS TO INCORPORATE FASD INTO EXISTING COMMUNITY SYSTEMS OF CARE

• RESOURCES FOR FAMILIES AND INDIVIDUALS THAT ARE FASD-INFORMED

• RESOURCES FOR TRAINING PROFESSIONALS IN MANY SYSTEMS OF CARE: EDUCATION, JUSTICE, MEDICAL, SUBSTANCE ABUSE, ETC.

• FASD CENTER FOR EXCELLENCE TO ADDRESS EXISTING BARRIERS OF DIAGNOSIS CAPACITY, LACKED OF FASD-INFORMED CARE, REPLICATING BEST-PRACTICES, RESOURCES, TRAINING OF PROFESSIONALS

• CREATION OF NATIONAL FASD AGENDA.

HOW MUCH $$$ - WHERE WILL IT GO?

• AUTHORIZATION OF $50 MILLION IN BILL – APPROPRIATORS DECIDE AMOUNT

• CURRENTLY NO SET AMOUNT FOR PROGRAMS IN BILL

• FASD RESEARCH $$$’S – ON TOP OF THIS AMOUNT (NIH – BUDGET - $30 M FY21)

• $2M – NATIONAL ADVISORY COUNCIL ON FASD

• $1M - ICCFASD

AUTHORS OF PROPOSED “ADVANCING FASD RESEARCH, PREVENTION & SERVICES ACT”

SENATE

LISA MURKOWSKI, R-AK

AMY KLOBUCHAR, D-MN

HOUSE OF REPRESENTATIVES

BETTY MCCOLLUM, D-MN

DON YOUNG, R-AK

STATUS OF ADVOCACY EFFORT/LEGISLATION

• CURRENT REVIEW BY LEGISLATIVE STAFF AND COUNSEL OF UPDATES AND CHANGES TO S. 2879

• INTRODUCTION – APRIL

• NOFAS POLICY TEAM MEETING WITH ADVOCATES, MEMBERS OF CONGRESS AND THEIR STAFF

• GOAL TO GET SUPPORT OF MEMBERS ON KEY COMMITTEES; THEN BROAD-BASED SUPPORT OF AUTHORS OF THE PENDING BILL

• INSIDE/CAPITOL HILL – GET SUPPORT

• OUTSIDE – BRING ADVOCATES TOGETHER

• MARKETING/MESSAGE – NEW WEBSITE (OR PAGE) FOR POLICY AND TRAINING CENTER WITH MATERIALS FOR ADVOCATES

COMMITTEES OF JURISDICTIONFOR FASD LEGISLATION

FEDERAL BUDGETING AND APPROPRIATIONS

EnactThe Advancing Fetal Alcohol Spectrum Disorders (FASD)

Research, Prevention, and Services Act

What is FASD

FASD describes the range of adverse effects that can occur in a person who is prenatally exposed to alcohol.

FASD includes diagnoses such as fetal alcohol syndrome (FAS), partial FAS (pFAS), alcohol-related neurodevelopmental disorder (ARND), neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE) and a range of alcohol-related birth defects (ARBD) with lifelong implications, including congenital physical malformations as well as possible severe physical, mental, behavioral, and/or learning disabilities.

Effect of Prenatal Alcohol and Other Drug Exposures

Current evidence indicates prenatal alcohol exposure is especially harmful to our nation’s children.

• The short and long-term effects of prenatal alcohol exposure7 are more severe and longer lasting than outcomes from prenatal exposure to other drugs.

• The use of alcohol during pregnancy7 is greater than the use of other substances and over 40% pregnant women9 using alcohol report using one or more other substances.

Source: https://www.cdc.gov/ncbddd/fasd

Alcohol use during pregnancy can cause birth defects1 and developmental disabilities2, collectively known as fetal alcohol spectrum disorders (FASDs).3

Alcohol use during pregnancy is also linked to other outcomes, such as miscarriage, stillbirth4 , preterm (early) birth5, and sudden infant death syndrome (SIDS).6

Ask: Promptly reintroduce and enact amendments to the Public Health Service Act to strengthen the National Agenda to address FASD

As of 2.18.2021 19nofas.org

EnactThe Advancing Fetal Alcohol Spectrum Disorders (FASD)

Research, Prevention, and Services Act

The Prevalence of FASD in the US is a Significant Public Health Concern

•A NIAAA-supported 2018 FASD prevalence study10 of 6,639 first- graders in four US geographically-separated communities found 222 (3.3%) had FASD. The study estimated the prevalence of FASD ranged up to 1-in-20 children. Only 2 youths had a previous diagnosis within the FASD spectrum.

•CDC researchers found12 among pregnant women (ages 18-44), 1-in- 9 had alcohol in the past 30 days, of whom about a third engaged in binge drinking (4+ drinks on at least one occasion over the past 30 days). Binge drinking13 puts the fetus at greatest risk for severe problems.

A Disproportionate Number of Youths with FASD in Justice/Child Protection Systems

• A 2015 review of studies on FASD in the justice system15 found that adolescents affected by FASD are 19 to 40 times more likely to become involved in the juvenile justice system.

• The National Council of Juvenile and Family Court Judges FASD guide states15 30% of school-aged children referred by child welfare agencies for assessment of behavioral problems met the diagnostic criteria for FASD. Significantly, 80% of those referred had no prior diagnosis within the FASD spectrum.

FASD is Costly to the United States

A 2018 comprehensive review16 of studies on the economic impact of FASD found an annual average cost of $30,945/person (includes health care, special education, residential care, productivity losses, and adjusted by 30% to include corrections costs) or $205B per year in the US.*

Investment in FASD Prevention and Intervention is Needed

Investment in prevention practices, early FASD identification and targeted FASD-informed interventions can reduce these costs. One WA state study found that preventing FASD is 30% more cost effective than raising a child with FASD.17 Expert opinions from treating professionals, a wealth of family experience, compelling animal research, and pioneering intervention studies indicate the appropriate treatment of FASD can have a measurable, positive impact.18

Federal FASD Funding

$27M1998

$12M2021

-56%

In 2020, an Adolescent Brain

Cognitive Development Study11 found

25.9% or 1-in-4 youths had been

exposed to alcohol in utero.

US prevalence studies estimate

the average cost to the US

for FASD is $205B

per year.

While some state and local communities have established policies and programs that support prevention and FASD-informed intervention, the US lacks a national FASD agenda and adequate resources to effectively prevent FASD and lessen the harm to those with FASD, their families and our communities.

Instead, federal funding for FASD programs has significantly declined during the past decade.

As of 2.18.2021 20nofas.org

*Multiply the FASD prevalence of 2% times the US 2020 population of 331 million times the per individual economic cost of $30,000 (2017 dollars).

EnactThe Advancing Fetal Alcohol Spectrum Disorders (FASD)

Research, Prevention, and Services Act

FASD Expert Panel, Department of Health and Human Service, September 2019

In 2019, HHS convened a Technical Expert Panel (TEP)19 who identified present-day gaps in the prevention, identification, intervention and treatment of FASD in individuals.

1) Risk Factors - Identify the risk factors for an alcohol-exposed pregnancy (AEP) to facilitate the development of a targeted prevention approach to FASD that focuses prevention efforts on women at greatest risk of an AEP. While factors such as pre-pregnancy alcohol consumption, homelessness, and abuse are noted as general FASD predictors, studies have yet to determine the role of age, race, and education level as AEP risk factors.

FASD Legislation - Section 2(b) would require CDC to conduct public health prevention research to identify evidence-based strategies that reduce alcohol and other substance exposures for pregnancies in women at high risk for alcohol and other substance-exposed pregnancies.

2) Messaging for Prevention – Research and implement effective messaging based on the results of identifying AEP risk factors. Currently, there is a lack of knowledge regarding which prevention messaging is most effective.

FASD Legislation - Research by CDC under Section 2(c)(B) and implementation by FASD Center for Excellence under Section 5(a)(2). Section 2(d)(4)(E) – Building State FASD Systems- authorizes use of grant funds for developing, implementing, and evaluating population-based and targeted prevention programs for FASD, including public awareness campaigns.

3) FASD Screening - Develop screening tools or universal screening processes to identify individuals affected with FASD. Train frontline professionals for screening.

FASD Legislation - Authorizes screening and training in Sections 2(a) to 2(f)] and 5.

4) Diagnostic Capacity – Develop, train, and use multi-disciplinary teams consisting of pediatricians, psychiatrists, occupational therapists, and special educators to diagnose and intervene in cases of FASD, especially children who are at risk for or have been diagnosed with FASD.

FASD Legislation - Section 5(a)(1).

5) Tailored Interventions – To implement behavioral interventions, providers must understand the needs of children with FASD at each stage of development. Experts recommend FASD interventions begin with a comprehensive neuropsychological examination to evaluate deficits and to create a tailored care plan.

FASD Legislation - Sections 2(c), 2(f), and 5(a)(3) and (4).

6) Juvenile Justice and Corrections Systems Education - For critical staff within the corrections system to provide the appropriate services and support for inmates and paroles.

FASD Legislation - Sections 2(d), 2(f), and 5.

Our proposed legislation addresses many of the gaps and needs identified in the TEP report.

“Of all the substances of abuse, including heroin, cocaine, and marijuana, alcoholproduces by far the most serious neurobehavioral effects in the fetus.”20

As of 2.18.2021 21nofas.org

EnactThe Advancing Fetal Alcohol Spectrum Disorders (FASD)

Research, Prevention, and Services Act

LIST OF REFERENCES

1. Content source: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention – Birth Defects

2. Content source: CDC https://www.cdc.gov/ncbddd/developmentaldisabilities/index.html3. Content source: CDC https://www.cdc.gov/ncbddd/fasd/4. Content source: CDC https://www.cdc.gov/ncbddd/stillbirth/index.html5. Content source: CDC

https://www.cdc.gov/reproductivehealth/maternalinfanthealth/pretermbirth.htm6. Content source: CDC https://www.cdc.gov/sids/7. Pediatrics March 2013, 131 (3) e1009-e1024; DOI: https://doi.org/10.1542/peds.2012-39318. SAMHSA, Center for Behavioral Health Statistics and Quality, National Survey on

Drug Useand Health, 2018 and 2019 Table 16.7B https://www.samhsa.gov/data/sites/default/files/reports/rpt29394/NSDUHDetailedTabs2019/ NSDUHDetTabsSect6pe2019.htm#tab6-20b

9. Content source: CDC, Key Findings: Alcohol use and binge drinking among pregnant womenaged 18–44 years – United States, 2015–2017. https://www.cdc.gov/mmwr/volumes/69/wr/mm6931a1.htm

10.May, et. al. Prevalence of Fetal Alcohol Spectrum Disorders in 4 U.S. Communities,JAMA. 2018;319(5):474-482 https://jamanetwork.com/journals/jama/fullarticle/2671465

11.Krista M. Lisdahl, et. al., Adolescent brain cognitive development (ABCD) study: Overview of substance use assessment methods, Developmental Cognitive Neuroscience, Volume 32, 2018, Pages 80-96. https://www.sciencedirect.com/science/article/pii/S1878929317300890

12.Content source: CDC https://www.cdc.gov/ncbddd/fasd/data.html13.Content source: National Institute on Alcohol and Alcoholism, Fetal Alcohol Exposure

https://www.niaaa.nih.gov/publications/brochures-and-fact-sheets/fetal-alcohol-exposure14.Allely CS, Gebbia P (2016) Studies Investigating Fetal Alcohol Spectrum Disorders in the

Criminal Justice System: A Systematic PRISMA Review. SOJ Psychol 3(1): 1-11 https://symbiosisonlinepublishing.com/psychology/psychology23.php

15.Content source: Implications of Fetal Alcohol Spectrum Disorders, Implications for Juvenile and Family Court Judges: http://www.niaaa.nih.gov/sites/default/files/publications/ICCFASD/NCJFCJ%20FASD%20Guid e%20Final-12012016.SA_Access_FinalTC.pdf

16.A Multi-country Updated Assessment of the Economic Impact of Fetal Alcohol Spectrum Disorder: Costs for Children and Adults (J Addict Med 2018;12: 466–473) – subscription required.

17.Content source: Addressing Fetal Alcohol Spectrum Disorders, A Review of the Literature, TIPSeries 58, US Department of HHS, SAMHSA, page 9 https://store.samhsa.gov/sites/default/files/d7/priv/tip58_literaturereview.pdf

18.Content source: National FAS Taskforce report, March 2009, page 7, https://www.cdc.gov/ncbddd/fasd/modules/calltoaction-P.pdf

19.HHS (ASPE) - FASD Technical Expert Panel Report: https://www.rti.org/publication/fetal- alcohol-spectrum-disorders/fulltext.pdf

20.Content source: Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment (1996), Institute of Medicine, National Academy Press, Washington, D.C.

As of 2.18.2021 22nofas.org

NORTH CAROLINA CONGRESSIONAL DISTRICTS

NORTH CAROLINA MEMBERS OF CONGRESS IN KEY COMMITTEES

SENATE POLICY – HELP

RICHARD BURR, RANKING MEMBER

HOUSE POLICY – ENERGY & COMMERCE

G.K. BUTTERFIELD (D-1)

RICHARD HUDSON (R-8)

WHAT CAN YOU DO AS A FASD ADVOCATE?

TELL YOUR STORY! DESCRIBE HOW YOU ARE AFFECTED BY FASD - WHY IT IS IMPORTANT TO YOU

MAINTAIN AN UP-TO-DATE AND ACCURATE KNOWLEDGE OF FASD

CONTRIBUTE YOUR PERSPECTIVE TO OUR FASD NATIONAL POLICY AGENDA AND LEGISLATIVE PROPOSALS

STAY CONNECTED WITH NOFAS RE: STATUS OF LEGISLATION AND OTHER POLICY PROPOSALS; GET TOOLKIT TO HELP YOU ADVOCATE

CONNECT WITH OTHER FASD ADVOCATES IN YOUR STATE TO WORK TOGETHER

HELP DOCUMENT THE SIGNIFICANCE AND IMPACT OF FASD IN YOUR STATE [I.E. STATE FACT SHEET]

EXAMPLE OF STATE FACT SHEET

NOFAS CAN HELP WITH CREATING YOUR

STATE FACT SHEET

NOFAS POLICY & TRAINING CENTER RESOURCES FOR ADVOCATES

POLICY & TRAINING COORDINATOR – JENNIFER WISDAHL

NOFAS.ORG (TRAINING & POLICY CENTER)

TOOL KIT, OTHER MATERIALS TO HELP YOU ADVOCATE

UPDATES ON LEGISLATION – MONTHLY WEBINAR – LAST WEDNESDAY OF EVERY MONTH

MEETINGS WITH ADVOCATES, MEMBERS OF CONGRESS AND/OR STAFF REGARDING LEGISLATION

CONTACT INFORMATION

NOFAS POLICY TEAM

• TOM DONALDSON – DONALDSON@NOFAS.ORG

• SUSAN CARLSON – SUSCA719@GMAIL.COM

• JENN WISDAHL – JWISDAHL@NOFASWA.ORG

Thank You!