“We need to work overtime to build on the successes CARA is producing for individuals with autism and their families,” said Smith, author of the bill who with Doyle founded and co-chairs the bipartisan Coalition on Autism Research and Education (C.A.R.E.). “This is a critical investment that is working to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”
The bill, H.R. 4631, has 35 bipartisan co-sponsors.
“I’m glad to have worked with my colleague Chris Smith and various groups to develop a reauthorization bill for federal autism programs that will allow for continued funding for research and services. The reauthorization of this critical legislation will provide resources to continue important research and dialogue, while also working to ensure that federal efforts are not duplicative,” Doyle said. “The latest autism numbers are simply astounding, and it is imperative that Congress come together to address this issue. Without reauthorization, funding for all federal autism programs will cease on September 30th, 2014. This common sense legislation simply must pass with bipartisan support.”
The Centers for Disease Control and Prevention’s (CDC) 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 Autism Spectrum Disorder (ASD), the highest rate in the CDC study.
Smith’s bill adds key reforms to the Interagency Autism Coordinating Committee (IACC) and safeguards to the funding allotted in the bill to ensure coordination is maximized and the taxpayers’ dollars are spent efficiently. It further increase accountability but requiring HHS to designate an individual charged with implementing IACC’s annual strategic plan and report to Congress how they are doing so.
It was almost 17 years ago, on September 13, 1997, Bobbie and Billy Gallagher, of Brick, N.J. residents with two small children with autism, walked into Smith’s office looking for help. The Gallaghers brought a focus to the issue of autism and the needs of autistic children that was missing at the federal level. Armed with data and their own research, they helped win approval of a landmark federal study and the enactment of legislation in 2000—the Autism Statistics, Surveillance, Research and Epidemiology Act (Title I, P.L. 106-310)—which created the first comprehensive federal program to combat autism.
“It all started with the Gallaghers over 15 years ago, when the parents of two young children came into my office looking for answers,” said Smith. “The Gallagher children are now both over 21 years old, which means they have aged-out of their support system and into adulthood and a society is unprepared to support them. Every year, 50,000 kids like the Gallaghers age-out and we need to have a national conversation on how we can effectively meet the needs of young adults who want to work, continue their education and remain in their communities.”
Smith’s bill adds a requirement that the Government Accountability Office review the existing landscape of services (federal, state, local government and the private and non-profit sectors), conduct a survey of stakeholders, and make recommendations to enhance coordination, efficiency, and the value of the services currently provided to assist individuals with ASD.
"Autism Speaks commends Representatives Smith and Doyle for their bipartisan leadership in spearheading this more aggressive federal response to autism," said Autism Speaks President Liz Feld. "The prevalence of autism has soared 123 percent since the first Combating Autism Act was passed and the federal response has struggled to keep pace. Autism is the fastest growing neuro-developmental disorder in the country. The CAA provides a framework to meet the needs of the autism community."
"We commend Congressman Smith and Congressman Doyle on their leadership and commitment to maximizing the quality of life for all diagnosed with autism through their introduction of this bill to reauthorize the Combatting Autism Act. They are true heroes within the autism community," said Scott Badesch, President and CEO of the Autism Society of America.
Smith is the author of the 2011 law, The Combating Autism Reauthorization Act (CARA)— (now Public Law 112-32) enacted on September 30, 2011. CARA authorized autism-related programs for fiscal years 2012, 2013 and 2014 and included: $22 million for the Developmental Disabilities Surveillance and Research Program; $48 million for Autism Education, Early Detection, and Intervention, and; $161 million for hundreds of Research Grants at the National Institutes of Health (NIH), and for the Interagency Autism Coordinating Committee. Smith’s new bill reauthorizes these programs for five years.