A law without funding isn’t change.
Before you can ask anyone to fix a problem, you have to be able to name it. So we start by understanding what exists for the FASD community, and what does not.
Here is what exists. In a real victory by and for this community, the FASD Respect Act became law as its language passed through the SUPPORT Act reauthorization of 2025. It authorizes research, real diagnostic capacity in states and tribal nations, and training for the professionals who work with people with FASD every day. That is what your legislators decided should happen.
Here is what does not exist: the money to run any of it, because authorization is not funding. So, while Congress agreed that people with FASD are entitled to these programs, there has not been the investment to actually deliver them. Research remains underfunded, provider training is nearly nonexistent, and diagnostic infrastructure is scarce. Not because the law does not exist, but because Congress has not yet funded it.
And we know that funding supports and awareness efforts is a better investment than paying for it later. FASD is one of the most common developmental disabilities in the country, affecting an estimated 1 in 20 school-age children. When it goes unrecognized, you encounter barriers and challenges across systems of care, and expanded costs come along with those challenges. When classrooms, emergency rooms, courtrooms, and crisis systems are non FASD-informed, we are all paying the price. Early diagnosis, informed providers, and real supports can strengthen families and prevent costly outcomes.
So, why is more not being done to support the FASD community? The answer is funding, and the solution is your voice. Your only task for today is to prepare to follow us over the next nine days as we highlight how this community can make the difference in this fight.
To get ready for tomorrow’s task to CONNECT, save this Zoom link so you can join us tomorrow at out Weekly Policy Drop in: https://zoom.us/j/94210118165?pwd=VlVLcW01U29BTi9NTytVS1pzWVE3dz09&from=addon. The Weekly Dop in is a great chance to meet the community, ask a question, or just see what is happening!
Take a look below for a sneak peek at what we have planned for September 1 through September 9!
- 9/2, Connect. Join our weekly drop-in and meet the advocates doing this with you. Save this Zoom link!
- 9/3, Research. Find out exactly who your two senators and one representative are.
- 9/4, Share Your Why. Put your story into a few clear sentences you can actually use.
- 9/5, Visibility. Show how you spread awareness, and help make a non-apparent disability impossible to overlook
- 9/6, Growth. Invite one person to advocate alongside you.
- 9/7, Close the Gap. Connect your experience to what funding would actually change.
- 9/8, Practice. Get call-ready with your script and your numbers in hand.
- 9/9, Make the Call. Ask your legislators to fund the law they already passed.
