Alright – so, if you advocate or have a child with autism then you understand everything about autism from intervention to services to research is about politics. Most autism policies are written by state legislatures or congress. Sometimes policies are written or implemented by state and federal agency leaders who are often appointed by politicians. In sum, autism is driven or not by politics and politicians.
Few years ago, I was advocating in Congress for the Combating Autism Act (now Autism Cares Act). I remember I wanted our state of Minnesota to be a state that every congress member – all eight and both senators voted and supported this legislation. So, I decided to contact all of them and ask. If you can believe it I got them all to support Combating Autism Act and vote for. The only one that gave me a little hard time was Rep Cravaack. I think his office told me he supported the bill literally the morning of the vote.
At any rate, I also contacted Speaker Boehner’s office to ask if they can put it up for a vote. And, to my pleasant surprise it was probably one of the easiest political office I have advocated. It took maybe one phone call and one email and I even got the letter below which I did not ask. His staff was so pleasant to deal with and knew their stuff inside out. I didn’t have to explain anything to them. They just got it and to get a letter from the Speaker of America’s political house – well that was a bonus and an honor.
I know the autism community will miss Speaker Boehner for his contributions and compassionate. Below is Speaker Boehner’s letter to me. I wish him luck in his next chapter in which he recently said “he can’t wait to walk to Star Bucks by himself to get a cup of coffee”.
Dear ldil:
Thank you for contacting me regarding autism care and research. I appreciate hearing from you.
As you know, autism is a complex developmental disorder affecting many people today. This life-long disorder deprives children of many abilities, such as interacting with others in ordinary ways, understanding and communicating with others, and having normal reasoning skills. The number of people afflicted with the disorder grows every day with no known cure or cause. Statistics state that nearly one in every 110 children now live with autism. This disorder leaves permanent effects on the children and their families.
The lnteragency Autism Coordinating Committee IACC) coordinates efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The IACC mission is to: 1) facilitate the efficient and effective exchange of information on ASD activities among the member agencies; 2) coordinate ASD-related activities; and 3) increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research, screening, education, and interventions.
You may be interested to know that funding for autism programs at the Centers for Disease Control and Prevention (CDC) has increased from less than $300,000 in 1995 to $22.1 million in 2011. During that same period autism funding at the National Institutes of Health (NIH) increased from $10.5 million in 1995 to an estimated $160 million in 2011. In addition, the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD) supports research on a variety of diseases and disorders. The program administers programs funding on autism, multiple sclerosis, breast cancer, prostate cancer, ovarian cancer, chronic myelogenous leukemia, neurofibromatosis, and tuberous sclerosis research, among others. From Fiscal Year 1992 (FY92) through FY10, CDMRP has received $6 billion in federal funding for research. CDMRP is funded at $394.4 million for FY11, including $6.4 million for the autism research program. From FY07 through FY10, the autism research program has received $29.9 million in federal funding.
Representative Chris Smith (R-NJ) has sponsored a bill to confront the challenges of autism, H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation would reauthorize the Combating Autism Act for an additional three years, through September 30, 2014. This bill has been referred to the House Committee on Energy and Commerce, who held a legislative hearing in July. As this bill moves through the Committee, rest assured that I will keep your support for autism care and research in mind.
Thank you again for contacting me with your thoughts. Please don’t hesitate to inform me of your concerns in the future. To sign up for email updates, I invite you to visit my website at http://johnboehner.house.gov .
Sincerely,
John A. Boehner
Above words do not represent any agency, candidate or committee.
Idil – Somali Autism Mom & Minority Advocate