At May’s Virtual Policy Forum FASD United Policy Coordinator Chris Melfi summarized a month full of Disability Policy happenings and outlined the steps our Congressional Champions have urged FASD advocates to take.
FASD United would like you to have a seat at the table during this year’s Impact Week in Washington, DC. We hope you can join us for three days’ worth of meaningful, interactive sessions focused on making an impact. Now is the time to start setting meetings with legislators in September, so reach out to melfi@fasdunited.org with any questions or if you would like some support!
If you are planning to join us for Impact Week, please consider attending the Red Shoes Gala on September 16th from 6:30 pm to 9:00 pm. This is FASD United’s main fundraising event and is an opportunity for us to celebrate some of the amazing members of the FASD community, from self-advocates to our Congressional Champions.
Run FASD is returning September 6th-16th, with registration opening June 1st! Run FASD is a virtual 5k event that can happen at your own pace, wherever you are. This is the dream of author, runner, and self-advocate Rebecca Tillou. Rebecca wants to encourage people with FASD, their allies, and supporters to make this non-apparent disability more visible. Email baldwin@fasdunited.org with any questions regarding Run FASD or the Red Shoes gala,
Policy Updates
May was a busy month in the Disability Policy space. The National Council on Disability released their policy priorities for FY 2025 following their meeting earlier in the month. Council members voted to focus on youth with disabilities in nursing homes and autonomous vehicles. Chair of the NCD, Claudia L. Gordon, Esq. says “the work that we (the NCD) do shapes legislation, policy, work that is done on Capitol Hill, work that makes its way throughout the federal government at a community level”.
During the NCD meeting, a council member noted their appreciation for the finalization of a rule that strengthens protections against disability discrimination. The U.S. Department of Health and Human Services, Office for Civil Rights made changes to Section 504 of the Rehabilitation Act that advance equity and protect people with disabilities from discrimination. The full rule can be read here, or you can view a fact sheet on the rule here.
Congresswoman Ayanna Pressley (D-MA-07) joined self-advocates on the Capitol to announce a bicameral resolution that calls for equity in reproductive and sexual healthcare for individuals with disabilities. This resolution would also designate one day in May as “Disability Reproductive Equity Day”.
The National Institute on Alcohol Abuse and Alcoholism (NIAAA) released their strategic plan for FY 2024-2028 earlier this week. The plan affirms the NIAAA’s goal of using cross-cutting research programs to reduce stigma related to prenatal alcohol exposure and to increase awareness and education of FASD. The NIAAA outlines three specific objectives: Advance the Prevention of Prenatal Alcohol Exposure, Improve Early Identification and Treatment Interventions for Fetal Alcohol Spectrum Disorders, and Identify Mechanisms, Diagnostic Biomarkers, and Potential Treatment Targets for Fetal Alcohol Spectrum Disorders.
Finally, FASD United submitted outside witness testimony for the U.S. Senate Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies Addressing the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Institute on Alcohol Abuse and Alcoholism, and Health Resources and Services Administration. The testimony can be viewed here.
June Policy Push
With everything that happened in the disability policy space in May, now is the perfect time to reach out to your two senators and one congressperson to provide an update on FASD in your state and the FASD Respect Act. The #1 piece of advice we have received over the last month is to keep talking about the bill with members of Congress. This is particularly important to do with members who sit on the House Committee of Energy and Commerce, Health Subcommittee. To view the members of this committee, follow this link.
Not sure how to craft a message to your senators or congressperson? Reach out to melfi@fasdunited.org who can answer any question you may have.
