First, I am really excited to have been nominated by US Sec of HHS Kathleen Sebelius – very grateful for the diverse folks from the public.
It was very intense simply because of such high powerful administration folks were there and many really frustrated and tired parents – yet interesting at least for a new kid on the block like me.
To write about this is both very sad and very exciting. Sad – because I really hoped by now that we would have answers for autism – cause, cure and a prevention so that our families along with millions of global families with autism would have some answers to this puzzling disability that is no day at the park.
It was exciting for me personally simply because I never imagined I would be able to advocate from such powerful corner in America’s public health arena.
This cycle of the IACC is very diverse at least from the public nominations. The federal agencies on the other hand – not so much. In fact, not even one member representing a federal agency within HHS is a person of color/minority. I must say this is a little frustrating since everyone is always preaching the need for more diverse. In other words, how can any federal agency tell a state agency to do something it is not doing itself?
In addition, we learned from Sec Sebelius while we preach diversity, there is not really any plans or specific goals to address it for at least the tons of state agencies and universities such as Minn dept of health and LEND program who take millions of dollars of federal funds. This is where I think we need to make some policy and guideline changes if we are to say what we mean and mean what we say – otherwise what is the point.
I also learned that while NIMH and CDC recommend therapies and treatments for autism, CMS does not really pay for it and states can choose to not pay for autism. Really – are you kidding me. We are telling parents – get this kind of therapy and sorry we don’t pay for it. I think that needs to be corrected as well.
I also learned that many parents mostly those that believe autism is caused from vaccines were really mad and told us during the public comments time. As a parent, I really understand the frustration, but not sure if attacking or insulting personally any federal agency head or representative will get us any points. I think there is a way to be, assertive, aggressive and ask for more environmental research while not picking on the very researchers we need their help. Plus, I really think they mean well and want to help all autism families.
Among the many distinguished speakers were President Obama’s policy advisers one of whom has a child with autism Mike S and Kareem D who both spoke without notes and from the heart. They assured us that the Obama administration is in our corner and recognized the need to do more.
My favorite was Rep. Doyle (D-PA) and Rep Smith (R-NJ), I thought they spoke with compassion, flare, empathy and candidly. They started the autism caucus in congress and are both co-authors of the CAA which funds IACC among many other things within US. HHS.
Finally, I really want to thank everyone that I met including all of the committee members especially Dr. Insel, Dr. Daniels, Dr. Boyle and Dr. Dawson who as you know had a big hand for the Somali autism surveillance study being done now at university of Minn.
Idil – Somali Autism Mom & Advocate