IACC’s 2nd Meeting on January 12, 2016 – The agenda and my take

Federal Interagency Autism Coordinating met for the second time under the new Autism Cares Act couple of weeks ago on Jan 12, 2016. Their first meeting was more about introductions and going over their charge which is to update the Federal autism strategic plan, to get input from the public and go over autism research for the past couple of years since the last update.

Director of NIH, Dr. Francis came to the first meeting and said a lot of nice thoughtful things. Of course, I like Dr. Francis, so maybe I am a little bias. My favorite part was from a public member John R who summarized public comments. John is one of those people that can find positive in any situation while acknowledging all concerns. John said what most autism parents are feeling in the country and how most think that the Federal government is moving too slow in showing any significant progress.

He also talked about how slow research moves and how far we have come including the good things IACC has done so far, especially under previous chair and my all time favorite autism expert – Dr. Insel.

As usual, there was some that were upset that Dr. Francis only stayed few minutes. I think this assessment is unfair. Dr. Francis is the director of NIH not just autism. The fact that he gave our issue time out of his full day speaks volume to NIH’s commitment to autism. In addition, what the heck should he stay for. He is updated and knows what is going on. Then there was those that were mad because HHS Secretary Burwell did not come. I remember when previous Sec Sebelius came to IACC, the same folks got mad. Therefore, it is really hard to please everyone in the autism community. What I was mostly disappointed in the first and 2nd meeting was the lack of anyone mentioning autism and racial disparity.

I hope the new committee members keep the momentum we built and focus on recommending research that tells us how to decrease racial disparity, not the usual research that says “yes there is autism racial disparity in diagnosis, access to services and resources”. We already know that.

The new committee is not as diverse as I would’ve liked. I think the previous one under Sec Sebelius was much more diverse. But it is too early to judge them. We will have wait and see their recommendations and outcome.

While it is expensive and impossible for many autism parents to go to DC and take part in these meetings, I highly recommend sending your comments, questions and suggestions. They do listen and validate them and I speak from experience having had my comments validated back in 2010 and 2011 regarding the Somali autism prevalence research and CMS’ autism therapy coverage in 2014. Everyone’s voice matters to IACC and they represent or at least try to speak for everyone and in every issue relating to autism in the country. Below was their agenda for the last meeting.

Above words do not represent any agency, committee or candidate.

Idil – Somali Autism Mom & Minority Advocate

Meeting of the Interagency Autism Coordinating Committee

Tuesday, January 12, 2016
9:00 am to 5:00 pm ET

National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 6
Bethesda, MD 20892

Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/events/

Next IACC Full Committee Meeting:

• Tuesday, April 19, 2016 – Building 31, NIH Campus, Bethesda, MD