Bipartisan legislation to reauthorize and enhance federal programs for families touched by autism has cleared its last committee hurdle Tuesday and is ready for consideration by the full House of Representatives.
Authored by Rep. Chris Smith (NJ-04) and now also called “Autism CARES Act”, HR 4631 authorizes $260 million years 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.
“My bill begins the conversation on how we as a society can best address the aging out crisis—that every year 50,000 youths with autism enter into adulthood and communities unprepared to support them—which will be augmented by a Government Accountability Office (GAO) report on the efficacy of the services landscape,”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.). “The research authorized in this bill through the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA) is helping families better understand and assist children and adults with Autism Spectrum Disorder (ASD).”
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.
“My 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. These 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,” said Smith. One recent study stated:
“Employment is a ‘key component of passage into adulthood,’ but if young adults with autism miss out on this rite of passage, they risk transition into a world of social exclusion, financial hardship, and significantly decreased quality of life. On the positive side, there is evidence that specialize, supported employment programs can be very helpful in assisting young people into work and in improving quality of life and even cognitive performance. In the long term, such schemes can become cost neutral as young people cease to be dependent on benefits and begin to pay taxes”
“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.
Smith’s bill has 74 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 further: 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.
“I appreciate Chairman Upton’s comments at the mark-up today that he will do what he can to bring this bill up for a vote,” said Smith. “We need to send my bipartisan bill to the President as soon as possible.”