Alright, so if you know me or read my blog then you understand my love/hate relationship with Autism Speaks. I love their research functions, I despise their ABA advocacy functions. First of all – their president Ms Feld walks on a high horse. Actually, I think the horse she walks on has another horse it rides or something. I mean she is really far removed from what is happening on the ground with autism families especially low income and minority ones. Even their leadership has zero African American person. What does that say about them? Think about that and how can Autism Speaks then speak for all of us.
I can’t even count how many times I have had conversations in public and private with Autism Speaks’ advocacy folks. And, they always tell me they care, they know, they understand then they go out and only advocate for the wealthy mostly non-minority autism families with private insurance. Really, they are getting on my last nerve. I wonder if their left hand knows what their right hand is doing. Seriously I wonder about that because they seem to talk from both sides of their mouth. They remind me of a child that always says to their parents – yes mom/dad, ok I will do that then turns around and does the opposite of what he/she told their parents.
I can’t really understand why Autism Speaks can’t speak for all autism families – rich, poor, Black, Brown and White at the same time for the same ABA coverage. How hard can that be? in fact it might actually be fun and equal.
For example, we now know that CMS will cover ABA autism therapy in all states, but states have to ask and put it under their EPSDT Medicaid plan. This is really good and Autism Speaks can ask whatever state they are advocating in for both coverage of Medicaid and Private insurance, right? But they don’t – they go to each state like they are now in NC asking for private insurance coverage, but not for Medicaid coverage. Why the heck not advocate for both?
Remember when Michael something came to MN and testified in our state legislature for only private insurance families and we said to him and to the legislator – no way/no how. If you are going to dictate and demand private insurance companies you don’t even own to cover for autism therapy then you better demand and dictate MN DHS to cover the same. And we prevailed which is what happened when MN state legislature passed MA and private insurance autism therapy coverage. But of course, we are not in every state and sadly Autism Speaks does not seem to learn any lesson of equal access by just advocating for the same equal access for all kids. This frustrates the crap out of me.
My humble advice for the remaining dozen or so states that Autism Speaks has not yet created racial autism disparity is when they come to your state demanding private insurance coverage – fight them. They might have the K street type lobbyist, but you have the ability to vote for those making the decision and they will hear and listen to your voice. So, fight Autism Speaks and tell them unless they are there to help everyone then they should get out of your state. If that does not work and they overwhelm you, then do what FL and WA did. Sue your state Medicaid agency for unequal access to autism therapy. If you are from Somalia or any other minority advocacy agency fighting Autism Speaks for equal access – feel free to contact me. I would be more than happy to help you and share what we did here in Minnesota. Autism Speaks might have the big bucks, but we can win.
Above words do not represent any agency, candidate or committee.
Idil – Somali Autism Mom & Minority Advocate