By Lisa Ackerman
Here we go for the third installment of Interagency Autism Coordinating Committee (IACC) Strategic Planning. Here is what the IACC is proposing:
The IACC is requesting public comments to inform the development of the 2016 IACC Strategic Plan. The objectives in the IACC Strategic Plan were last revised in 2011, and the Committee provided updates on the progress of the Strategic Plan in 2012 and 2013. The IACC Strategic Plan is organized around the following seven questions that are important for people with ASD and their families:
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When should I be concerned? (Diagnosis and Screening)
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How can I understand what is happening? (Underlying Biology of ASD)
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What caused this to happen and can this be prevented? (Risk Factors)
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Which treatments and interventions will help? (Treatments and Interventions)
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Where can I turn for services? (Services)
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What does the future hold, especially for adults? (Lifespan Issues)
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What other infrastructure and surveillance needs must be met? (Surveillance, Infrastructure, Workforce, Outreach, and Collaboration)
The IACC is requesting comment on what you consider to be the most important issues and remaining gaps related to these seven topical areas. Thank you for your interest and comments to assist the IACC in preparing the 2016 IACC Strategic Plan Update.
Here is how to participate https://iacc.hhs.gov/meetings/public-comments/requests-for-information/2016/strategic-plan.shtml
Who is the IACC?
The Interagency Autism Coordinating Committee (IACC) was formed from the Combating Autism Act (CAA) of 2006 with one mission in mind: Coordinate to find the cause and assist with initiatives that will help families living with autism. As you may notice, I have taken the liberty to summarize their mission statement. You may read the Committee’s full mission statement at the IACC website https://iacc.hhs.gov/about-iacc/overview/.
Why should you care about the IACC?
The IACC is setting policy to drive research and possibly could frame parent needs and services for individuals diagnosed with autism. It is my opinion that government officials feel the IACC is addressing the needs of the autism community. We continually need to let the IACC know how we feel. It is important to note since inception the IACC has spent over $3 billion tax dollars.
On the TACAnow blog we have written about the IACC and our concerns. Here is where you can view those posts:
https://tacanowblog.com/2015/08/07/why-would-a-government-panel-question-universal-autism-screening/
http://www.tacanow.org/blog/what-the-iacc-must-consider/
http://www.tacanow.org/blog/the-iacc-reconvenes/
http://www.tacanow.org/blog/what-constitutes-an-emergency/
https://tacanowblog.com/2013/09/09/iacc-july-2013-meeting-recap/
I am deeply aware of how busy families living with autism and the daily struggles they face. I am asking families to please share their thoughts and concerns during this important process so they are heard. I have and will continue to do so. You have until July 29, 2016.
Moving Autism Forward by Team TACA 
While I commend the early interventions now available to children, my concern is the availability of meaningful employment, vocational opportunities and independent living situations. Children do grow up to become adults and not everyone has had the benefits of biomedical or therapeutic assistance. These adults have aging parents or caregivers who may or may not have the energy or resources to provide for their offspring with Autism.
Thanks Susan for your comment. Please share with the IACC too!
Lisa, thank you for urging others to contribute to the IACC’s work within their strategic planning efforts. From their prior efforts, we’ve seen very little results unfortunately within research coordination that has lead to improving the lives of individuals with autism. I would strongly urge parents and others to contribute during this open comment period. Three billion dollars spent on autism research with little results should be of concern to all of us.
Additionally, I’d ask that those concerned about the manner in which the IACC is functioning to provide public written comment for their next meeting or plan on attending the meeting and provide oral public comment so that the committee members hear from those of us within the autism community. It is imperative for us to do so. Often I hear from governmental officials that they had never heard some of the concerns our family has shared over the years. That is often the case however and people will not know unless we tell them and do so for the public record.
For information on how to provide public written comment, or attend the July 18th meeting and provide oral public comments, please visit the IACC’s website here:
https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/
Please note that intent to provide oral public comment must be submitted by July 5th and written public comments must be submitted by July 11th, 2016.
Thank you!