1/14/14 IACC Unanimously Approves 2013 ASD Strategic Plan

It was a complete in-sync vote because we debated and debated about every detail of this plan for weeks and months via phone and in person meetings. There are seven questions to this plan that deal from research to policy to services. Each question had a sub-group that met and spoke with experts in that field to get their take and the latest research of what we know and what more we need to know and recommend.

Some of the areas I was interested were services and policy, especially how do we get research of why disparity exist for minority children rather than does disparity exist. I think we have accomplished that as we have recommended in question five which deals with services research and policy. I also was interested in assuring not just outreach to services is culturally responsive, but autism intervention is also culturally responsive and luckily we have included that in question four which deals with interventions and treatments. There were really good other items as well that were fought long and hard by many autism parents and advocates such as folks from SafeMinds that made into the plan. I really thank these parents’ courageousness for pushing the fact that many autism children have medical issues in addition to behavior problems. GI issues such as abdominal pain, diarrhea, etc are associated with autism and IACC plan recommended more research. I really would like to thank TACA parents and advocates, especially Lisa Ackerman. Many parents like Lisa have pushed and asked IACC to recommend more GI research funding and now it has been recommended. Job well done Lisa and all of the other parents who daily speak for their children with autism. 

Now, no one gets everything they want especially with a committee this big and too many people representing many different government agencies and public issues. As a result, there were some items that I would have liked that did not make into the final recommendations. But the good thing about this ASD committee is we talk and debate everything in detail and in public by following the Federal open meeting laws or FACA (Federal Advisory Committee Act) And, if I make my case and I am outvoted then so be it. Maybe next time, I will do a better job in persuading. This report as required by law will go to Sec of U.S HHS Sebelius and Congress. And, as many of you know the CAA (Combating Autism Act) which created IACC sunsets this year and has to be re-authorized. And as someone who advocated for this the last cycle which was extremely difficult hope that it gets a united front this time from the autism community.  I know autism community is hard to unite, it is complex and confusing but what happens when we in the autism community fight against each-other is that we confuse a very confused congress members. More on the re-auth of CAA as it gets closer.

We also had presentations and one of my favorite autism researchers from Marcus Autism Center in Atlanta came to present. Dr. Ami Klin talked about the ability of diagnosing autism at an early age of just few months. His presentation was amazing and very interesting. You can watch it online at IACC site if you want to see the detailed version. 

We also discussed the recent GAO report which stated some harsh criticism for IACC and many U.S HHS departments. Personally, I think we should not be mad at GAO – they are just doing what Congress asked them. I also think there are many autism parents that are not very happy with federal agencies and we need to recognize that and validate their frustrations. There will be an IACC public committee response to this report which is now being written and circulated. And, most U.S HHS agencies sent their own responses as well. And, as I said in this meeting, while I was advocating the re-auth of CAA back in 2011, there were many autism parents and advocates that did not want it reauthorized and complained to Congress which is how GAO was asked. Therefore, I think we need to not dismiss this report, but learn from it and above all hear and validate all autism parent’s concerns and frustrations. Besides there is always room for improvement in IACC and all Federal agencies that deal with autism. 

In other words, I look at this report as a positive criticism and a learning opportunity – my humble little opinion. 

U.S Department of Education – Promise Initative: This was really good for Dept of Ed to undertake. 

Medicaid Residential Option with people with autism and other disabilities: 

Above words are my opinion and do not reflect any committee or agency.

Thanks!

Idil – Somali Autism Mom & Minority Advocate