Alright, so hopefully if you are an autism parent, relative or love someone with autism – you heard that Autism Act of 2006 and 2011 changed its name to Autism Cares act in 2014. This was a bi-partisan bill being led by Congressman Smith (NJ- R) and Sen. Menendez (NJ – D). HR 4631 passed the house smoothly, but S2449 hit some obstacles in the Senate after it passed out of the HELP committee.
Why you ask? Because autism is hard, confusing, complex disorder that often parents, advocates and researchers disagree on. There was a strong minority of parents and advocates that opposed this act and had their followers contact few senators to oppose and not vote for it. I for one never ever try to oppose any parent as I can only speak for my son. And, as a minority autism advocate – I always have empathy for those that might not have the majority’s views.
However, from what I learned in my minute and half of advocating in both Congress and state legislature – I would have done it differently. First, I would not ask so many things. I think asking Congress to create even more advisory panels & more government bureaucrats did not help. 2nd, Picking on Federal government agency leaders that Congress listens to their advice and take also did not help. Most members in Congress irrespective of their party usually trust researchers. 3rd, I would’ve only asked environmental research be at least 20% of the Federal funding and written into the legislation and reported to Congress and HHS Secretary. And, I would’ve asked one DFL and one GOP to carry it in an amendment in the house so that when it got to the Senate – they could see it had a bi-partisan support. We all know the U.S Senate is lazy, the U.S House is usually better.
I get it sometimes you want to ask the kitchen sink in the hope of just getting a spoon full, but in Congress where they are usually confused and over-whelmed with so many issues – less is better.
Anyway, the bill passed the Senate end of last week as it was mostly from the house with the help of Sen. Menendez who really pushed and advocated behind the scenes to convince the few senators having problems.
It now awaits for President Obama to sign and IACC which I serve as a public member and was nominated by previous HHS Sec Sebelius will sunset end of Sept and the new HHS Sec will have to nominate new members. I will not be going back to serve IACC, sadly. Oh, alright – some of you are celebrating. But all kidding aside, I learned so much from everyone especially those from NIH, NIMH, NIEH, CDC, HRSA and CMS as well as many of the public members such as Dr. Dawson, Dr. Mandell, Dr. Batra, Sally, Matt, Scott, Lyn, Jan and so many more. I thank everyone for their support and encouragement. I have also learned from the many courageous parents that came to every meeting. You all truly inspire me to keep going and advocating. I hope you know your voices and opinions are listened to at IACC and validated. Finally, I would like to thank IACC Chair, Dr. Insel for leading our committee and always respecting opposing views, and assuring we always came to a middle ground.
I have met people that I will remain friends with after this which I am very grateful to. I hope that the new Sec appoints more diverse members to the next cycle of IACC. And, I hope we as a nation continue to strive for equity in policy, services, resources and research.
Above words do not represent any committee, agency or candidate. Idil – Somali Autism Mom & Minority Advocate