Washington, D.C. - Bipartisan legislation to reauthorize and enhance federal programs for families touched by autism was debated and passed by the House of Representatives tonight.
Authored by Rep. Chris Smith (NJ-04), the
“Autism Collaboration, Accountability, Research, Education and Support Act of
2014—(Autism CARES Act),” HR 4631 authorizes $260 million annually over five
years for research into autism and urges federal agencies to examine and
anticipate needs for autistic children who are “aging out” of current programs
and need different assistance as adults. The bill passed in a unanimous voice
“Previous autism law including the Combating Autism Act of 2011 made critical investments—continued by this bill—that are working to determine the causes of autism spectrum disorder (ASD), identify autistic children as early as possible to begin treatment, raise critical awareness and develop new therapies and effective services,” said Smith who, along with the bill’s Democrat cosponsor Rep. Mike Doyle, founded and co-chairs the bipartisan Coalition on Autism Research and Education (C.A.R.E.). “Mike Doyle has been a great partner on this bill and on all autism spectrum disorder issues (ASD) in Congress.” ( Click here to read Smith’s floor statement)
The CDC’s most recent data shows a continued increase in autism prevalence rates: 1 in every 68 American children (1 in 42 boys and 1 in 189 girls). In New Jersey, 1 in every 45 children has ASD, the highest rate in the CDC study.
Smith told his colleagues on the floor that nearly 17 years ago, constituents Bobbie and Billy Gallagher of Brick, NJ and parents of two small children with autism, walked into his Ocean County district office looking for help. They believed their town had a disproportionate number of students with autism and wanted action, so Smith asked CDC and other federal agencies to visit Brick and investigate. They learned that prevalence rates were high not only in Brick but in nearby communities as well. Back in Washington, Smith introduced HR 274—the Autism Statistics, Surveillance, Research and Epidemiology Act (ASSURE) which was enacted as Title 1 of the Children Health Act of 2000.
Smith’s new legislation includes a report from the HHS secretary on best practices for transitioning adolescents, which will be enhanced by another report by the GAO that provides critical input from state and local governments, the private sector and non-profits working with kids with ASD. The reports will beef up the government’s commitment to help individuals with ASD making the transition from a school-based support system to adulthood by studying the demographics and needs and encouraging independent living, equal opportunity, full participation, and economic self-sufficiency.
“We need to do a better job of preparing children with ASD for adulthood and provide the help and services they need to reach their full potential,” said Smith. “The Autism CARES Act tasks multiple federal agencies to study and report back to Congress on the special needs of autistic young adults and transitioning youth. In light of the severity of the aging out crisis, we must do more and fast and ensure we are providing a comprehensive and thorough review of available services—and those we need to create.”
Smith’s bill has over 80 bipartisan cosponsors and support from Autism Speaks, the Autism Society, the Association of University Centers on Disabilities, and the American Academy of Pediatrics.
The legislation would also: reauthorize autism research for five years, including $22 million for the Developmental Disabilities Surveillance and Research Program at the CDC; $48 million for Autism Education, Early Detection, and Intervention, and; $190 million for hundreds of Research Grants at the National Institutes of Health (NIH), and the Interagency Autism Coordinating Committee (IACC), annually; add key reforms to IACC to ensure coordination is maximized and the taxpayers’ dollars are spent efficiently; and increase accountability by requiring HHS to designate an individual charged with implementing IACC’s annual strategic plan and report to Congress how they are doing so.