I have been talking with some other folks parenting people with FASD and, well, sometimes I think that I think too small. This situation with the FASD Center of Excellence could end up being a benefit to us and our loved ones in the long run. I'm still fired up about the funding being cut to the CoE but perhaps, as part of the discussion of how that kind of got sneaked in with no discussion or debate, we can also start some discussion of how the funds have been used in the past and how they should be used going forward.
The SAMHSA FASD Center for Excellence was launched in 2001. Congress authorized the it in Section 519D of the Children's Health Act of 2000, which included six mandates).
The stated mission of the FASD Center for Excellence is to facilitate the development and improvement of behavioral health prevention and treatment systems in the United States by providing national leadership and facilitating collaboration in the field and it lists three goals:
- Reduce the number of infants born prenatally exposed to alcohol.
- Increase functioning of persons who have an FASD.
- Improve quality of life for individuals and families affected by FASD.
For the most part almost all funds spent to this point have been aimed at prevention only. “Treatment” has been focused on treatment of women with substance abuse problems which is in essence – more prevention. I don't disagree that keeping more people from having the struggles and pain our loved ones suffer is important. But there is almost no spending on research for how to help and support those already affected or on research into how to do that most effectively. Surely that deserves effort? So – in addition to outrage at the defunding of the center - Maybe we should be shifting the conversation from "how dare you decrease what was already insufficient?" to a different conversation altogether, something more like – "put back the money and see that it goes into the other 2/3rds of your goals!"
So I've been trying to figure out what that form letter looks like. I have not gotten far yet but the idea is more persistent than an earworm noodling around and around in my head. Restore funding remains an important part of the message - but we should be making our voices heard loud and clear on what to do with that funding. Awareness and education for people working with those affected and research on effective supports / therapies across the lifespan as well as providing help and support have always been the intent of the Center. They need to become the practice as well, because in the end both of those efforts will also end up having preventative effects.
It is hard to take this on sometimes - the problem is just so big - which I suppose is another way of saying I'm thinking too small. I LIKE small actionable targets. I like things that make me feel like I have gotten something done, things I can check off as complete. I guess I have to keep working on really embracing the messy, not ever "complete" part of this struggle.
Fortunately another thing I've never done well is give in, or give up, so you can bet I’ll keep trying.