AUTISM SURVEY REVEALS SHORTCOMINGS IN
FEDERAL RESPONSE TO AUTISM CRISIS
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.”
Read the rest of the statement here: