Autism Survey Reveals Shortcomings in Federal Response to Autism Crisis

November 28, 2018

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Executive Summary: 2018 IACC Stakeholder Satisfaction Survey (pdf)

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Congressional Hearings Needed Before Reauthorization of Autism CARES Act

Baltimore, MD., November 28, 2018 – The Federal advisory committee charged with coordinating all U.S. Government efforts on autism is failing to meet the needs of individuals and families affected by the disorder, according to a survey released today by several autism advocacy groups. The survey, primarily of parents and caregivers of individuals with autism, found that the Interagency Autism Coordinating Committee, or IACC, has failed to make a difference in the lives of people with autism. The autism advocacy groups are asking Congress to replace the IACC with a more effective Office of National Autism Policy Coordination when it considers reauthorizing the Autism CARES Act next year.

The 2018 Interagency Autism Coordinating Committee (IACC) Stakeholder Satisfaction Survey collected responses from 1,405 autism community members through an online questionnaire. The Reform Autism CARES Coalition (RACC) released the findings to inform Congress of the deficiencies in the Federal response to the autism crisis. The RACC is comprised of national autism advocacy groups Autism Action Network, SafeMinds, and the Thinking Mom’s Revolution (TMR).

According to its website, the IACC “is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD).” The IACC was originally established under the Children’s Health Act of 2000. The current Committee was reauthorized through the Autism CARES Act of 2014. Operating the IACC costs American taxpayers $1.38 million per year.

Since the Committee’s creation in 2000, the number of American children with autism has increased 120 percent, from 1 in 150 in 2000, to 1 in 59 in 2014, according to the U.S. Centers for Disease Control and Prevention. The age of diagnosis has barely budged, and no new treatments have been identified. Autism is on track to cost up to $1 trillion by 2025 in medical, nonmedical and productivity losses, according to a University of California, Davis study.

SafeMinds Board President Sallie Bernard, a RACC member, stated, “the IACC has failed to produce a response to the current autism crisis commensurate with its scope and depth. Accordingly, our country now has many more Americans with autism, and less resources with which to address their needs. The autism crisis demands a more inclusive, proactive, and accountable response from the Federal government than the IACC has delivered.”

Survey respondents commented on the following shortcomings:

John Gilmore, executive director of the Autism Action Network stated, “The IACC is leading America’s charge to address autism. Yet, it has consistently demonstrated not only a lack of urgency, but also disenfranchisement of autism community stakeholders. Though it was reauthorized in August 2014, the IACC did not meet for over a year until November 2015. This is devastating when there are so many individuals and families suffering with autism and its many commonly co-occurring medical conditions.”

The RACC is recommending the IACC be replaced with a small Office of National Autism Policy Coordination, led by a full-time Federal autism policy coordinator. Placed in the agency-neutral Executive Office of the President, the Office would be responsible for producing a National Autism Strategy, with measurable goals, objectives, and outcomes. The Office will report annually to Congress on its progress in addressing the autism crisis, as defined in the Strategy document. The Strategy will focus its policy and research on prevention, treatments, and services for people with autism and their caregivers.

Kim Spencer, vice president of TMR, stated, “Since many families cannot travel to Washington, D.C. to share their experiences raising their children with autism, the use of interactive technology should be facilitated so all families facing autism have a chance to provide input on Federal autism policy. Finally, since the American taxpayers deserve more accountability, we are advocating for monitoring the effectiveness of federally-funded autism programs to ensure the best return on investment.”

The RACC is requesting congressional hearings on the Federal Government’s current autism response in early 2019. Hearings would aid Congress in understanding the urgent crisis of autism and the need to make changes to the Autism CARES Act prior to considering its reauthorization. More information on the RACC’s recommendations, and the full 2018 IACC Stakeholder Satisfaction Survey Report can be found online at safeminds.org/reform-autism-cares.

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ABOUT AUTISM ACTION NETWORK: Autism Action Network’s mission is to be a strong and unified voice for people with neurodevelopmental and communication disorders so that each person will be provided with the support necessary to live a full and productive life. For more information, please visit autismactionnetwork.org

ABOUT SAFEMINDS: SafeMinds is a national 501 (c)3 nonprofit organization formed in 2000. Its mission is to end the autism crisis by promoting environmental research and advocating for effective treatments.

ABOUT TMR: Thinking Moms’ Revolution is a national 501(c)3 organization that provides real help to families struggling with medical, emotional, educational and financial hardship due to complex medical needs faced by their children diagnosed with autism and other developmental disabilities. Help comes via funds to defray costs for practitioner appointments, recommended treatments, travel-related expenses to meet with experts in their fields, materials to start homeschool or purchase an AAC device that helps facilitate communication, expenses related to autism conferences and legal expenses as applicable. For more information, please visit thinkingmomsrevolution.com and teamtmr.org.

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