What the IACC must consider

October 26, 2012

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By Lisa Ackerman

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 (1.)

Since the IACC’s inception, I have been hard pressed to find an accomplishment that demonstrates the value of the $700,000 budget spent. As some of you may recall, I wrote about this issue earlier this year (2.)  I welcome the opportunity to speak to anyone on the IACC to discuss my concerns.

My purpose in writing this blog is to help with planning the next steps for the IACC. It is my objective to communicate urgent needs while echoing the sentiments of others, and include the following requests:

  • Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 88 children are living with autism in the United States.
  • Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on surveys do not work. Real numbers and details such as age groupings are urgently needed. (3.)
  • Consider a more diverse board at the IACC to include some of the world’s researchers in cause and innovative treatment such as:  Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today. Adding more experts to the IACC board would help further the efforts in a more positive direction.
  • Collaborate with families via support groups in indentifying needs for those living with the condition today.
  • Outside traditional therapies, medical treatments are helping individuals with autism live healthier. Based on new research, co-morbid medical issues do exist with autism. Where are the initiatives addressing these concerns to define answers? (4.)
  • Identify a task force to address the current and future needs of adults living with autism.
  • Prioritize and evaluate all possible environmental causes of autism.
  • Operate with a sense of urgency in your strategic plan. We cannot waste another moment. We must drive for answers.

It seems most families I work with don’t know of the IACC’s existence or purpose.  In the past six years, not one family shared with me that the IACC has improved the quality of their life.  It appears that based on the IACC’s annual budget and meetings held, there should be more to show concerning their accomplishments in addressing the many issues regarding autism.

The annual cost of autism is estimated over $137 billion annually. (5.)  We cannot afford to keep the status quo, families are drowning and in need of urgent support.

The IACC will be meeting on Monday, October 29th to update their strategic plan. I would like to encourage feedback from the autism community. Please communicate what your family’s needs are.  You may do so directly via a written public comment at the committee meeting next week or you may do so here, by replying to this blog.  What does the IACC need to do?

Resources

  1. About the IACC: http://iacc.hhs.gov/about/
  2. IACC Reconvenes: http://tacanow.org/blog/the-iacc-reconvenes/
  3. What constitutes an emergency: http://tacanow.org/blog/what-constitutes-an-emergency/
  4. Many children with autism have other health problems: http://health.usnews.com/health-news/news/articles/2012/09/25/many-children-with-autism-have-other-health-problems-study-says
  5. The annual cost of Autism http://tacanow.org/blog/the-annual-cost-of-autism/

Side note:
Special thanks to IACC Committee member John Robison for already sharing his feedback and desire to collaborate.  I truly appreciate his input and collaboration.