The New York State Senate has seen legislation (A.2297/S.1866.) introduced by Senator Samara Brouk of the 55th District and Assemblymember Sarah Clark of the 136th District that seeks to amend the Mental Health Hygiene Law, adding FASDs to the definition of “developmental disability”. This change would include fetal alcohol syndrome, partial fetal alcohol syndrome, and alcohol-related neurodevelopmental disorder. 2023 has already seen similar legislation introduced in North Dakota, where the State Senate seeks to include FASDs in the definition of developmental disability as part of a larger FASD related bill.
Classification as a developmental disability would allow individuals with FASDs to receive supports already provided to those with other developmental disabilities previously included in the definition, like autism and intellectual disabilities. Services range from employment and housing support to crisis services, respite, and environmental modifications as offered by the Office for People with Developmental Disabilities (OPWDD). This expansion of supports in New York is critical as the state has only two FASD clinics; A New York City clinic comprised of a single provider and the University of Rochester’s FASD Diagnostic and Evaluation Clinic. The University of Rochester and the Healthcare Association of New York both authored Memoranda of Support for this legislation, provided to FASD United by Dr. Christie Petrenko, which you can read below.
Dr. Petrenko, faculty member at Mt. Hope Family Center at University of Rochester, is on the cutting edge of FASD informed research and practice. She also makes sure to center the lived experience of those with FASDs when advocating for change, seen in her collaboration with Run FASD in 2022. Run FASD is a virtual 5k event created and managed by self-advocate, author, and runner Rebecca Tillou, and is supported by FASD United. Dr. Petrenko hosted a Meetup for the 2022 Run FASD event that was attended by both Senator Brouk and Assemblymember Clark. The legislators spoke on the importance of advocacy for policy change, while Rebecca thanked attendees for their willingness to spread awareness of FASD. Check out a video of the event provided by Dr. Petrenko! In response to this specific piece of legislation, Rebecca says “Those with an FASD require certain accommodations in the classroom and different ways of learning than those with other disabilities. This would assist us in obtaining those accommodations and successful teaching strategies”.
Participating in Run FASD 2023, or hosting a Meetup, is one way you can spread awareness of FASD and FASD informed legislation, and you can learn more here. To support this legislation, we urge you to stay connected to our FASD Affiliate Network members National Council on Alcoholism and Drug Dependence (Rochester Area) and Justice for Orphans.
If you live in New York and want to urge your Assembly Member to support this legislation you can find their email here.
Dr. Petrenko has also provided more ways for you to help, which you can see directly below.
Key Updates
- A.2297/S.1866 has been reintroduced in the state senate and assembly.
- We are also urging language on FASD be added to the FY 2023-24 budget, as fiscal concerns have been leading issue for OPWDD
- We are working on engaging OPWDD for an additional meeting
How You Can Help
- Personalize this letter to urge adding FASD to the budget.
- You can mail copies to addresses in the letter. You can also email to addresses below. Please also email a copy of support letters to me or our government relations director Elma Borcilo so she can pass along to Brouk/Clark.
- Text “SIGN PODFAK” to 50409 to use the RESISTbot to send a modified version of this form letter to your state senator and assemblyperson. We used this bot to gather support the FASD Respect Act and it was quite successful.
- Share both of these options with people in your networks, friends, family, and other NYS constituents.
Email addresses to send personalized form letters:
scousins@nysenate.gov for Senate Leader Andrea Stewart Cousins
Speaker@nyassembly.gov for Assembly Speaker Carl Heastie
lkrueger@nysenate.gov for Senate Finance Chair Liz Krueger
WeinstH@nyassembly.gov for Assembly Ways and Means Chair Helene Weinstein
