FASD Legislation 2024

FASD Respect Act  S. 1800  H.R. 3946    

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​Thank you to Maine's legislative delegation for co-sponsoring the FASD Respect Act!

Senators Angus King and Susan Collins, and Representatives Chellie Pingree and Jared Golden

 

Why we need this federal legislation:

• Fetal Alcohol Spectrum Disorder (FASD) is caused by prenatal alcohol exposure(PAE) and is the number one cause of intellectual disabilities and birth defects in the U.S.

• FASD affects as many as 1 in 20 school age children

• Providers need training in FASD prevention, diagnosis, and support

• FASD is often misdiagnosed or the missed diagnosis

• Number of people who drink in pregnancy is increasing:

  •  1 in 7 in the U.S

  •  1 in 6 in New England

  •  1/10 in Maine

  • 1/6 in Cumberland County

  • Number of substance exposed infants in Maine  600-1000 every year since 2014

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The FASD Respect Act will:

• Provide a standard case definition for FASD

• Promote and fund education, awareness and services across community agencies and systems of care serving individuals across the lifespan - infants through adults

• Provide funding to State and Tribal Systems for FASD Services throughout the lifespan

• Create Centers for Excellence to guide states and other systems of care in expanding diagnostic capacity, public awareness and outreach about FASD, and provide training and technical assistance on prevention, as well as supports and interventions for people diagnosed with FASD.

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Support the FASD Respect Act here 

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Where it all started in Maine:

• 2021 FASD Maine meets with each office of Maine's U.S. Senators and Representatives.

• Maine's Full Legislative Delegation (King, Collins, Pingree, Golden) become Cosponsors of the FASD Respect Act

October 8, 2021 Senator Angus King:

"King Cosponsors Bipartisan Bill to Address Pressing Infant Health Issue

FASD Maine welcomes his support of FASD Respect Act seeks to reduce Fetal Alcohol Spectrum Disorders"

WASHINGTON, D.C.  For full press release go here

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September 19, 2021 Senator Susan Collins 

"FASD is an overlooked crisis affecting millions of children and adults,” said National Organization on Fetal Alcohol Syndrome (NOFAS) President Tom Donaldson.  “This landmark bill will advance research, increase education, and most importantly provide access to critical services for individuals affected by FASD and offer them long overdue opportunities to succeed. The FASD community thanks Senator Collins for her visionary support in co-sponsoring this FASD legislation to bring much needed focus and resources to a huge societal problem.” For the full press release go here

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• ​Maine Data  Supports  FASD Legislation (for additional SEOW Maine Data)

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October 2022

California statute makes FASD a qualifying condition for special education services

Passage of landmark law in California, SB 1016, for the first time specifies Fetal Alcohol Spectrum Disorders (FASD) as a named condition that qualifies a person to receive special education services under the IDEA category “Other Health Impairment.”  

• This will improve the lives of thousands of California students living with FASD, a disability that affects up to 1 in 20 school children, making it the most prevalent, yet mostly unrecognized, developmental disability in the US.

• FASD is not named as a disorder under the federal IDEA. Less prevalent disorders are - e.g., autism, diabetes, epilepsy are named conditions under IDEA.

• A student with an FASD often must educate their school systems re: FASD and make their case to the school in order to be considered for special services and may not quality. 

Hence, students with the most prevalent (and preventable) developmental disability in the US are being underserved in school districts across the Maine, unable to make the most of their neurodiversity and many skills and talents. Due to the lack of services and support in childhood, these students and their families often suffer lifelong consequences. 

• There is precedent for this kind of legislation, including FASD as a named condition under IDEA state statute.

• Other states, including Alaska, consider FASD as a qualifying condition for special education. Colorado and Minnesota mention FASD in their education manuals to be considered for special services.

• Advocates strongly believe that by recognizing and appropriately addressing FASD in education the trend towards secondary disabilities can be disrupted and the school-to-prison pipeline for students on the FASD spectrum can be broken. 

For more information about IDEA and the category of OHI (Other Health Impairment) re:FASD.

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