September 27, 2019
The Smith-Doyle Autism CARES Act of 2019, (HR 1058), was approved unanimously by the Senate late this afternoon, following July passage by U.S. House of Representatives.
“This $1.8 billion, five-year package will fund a whole-of-government approach to helping children and adults with Autism Spectrum Disorder (ASD) and their families,” Smith said. “When enacted the law will authorize autism-related programs at National Institutes of Health (NIH) at $296 million, the Centers for Disease Control and Prevention (CDC) at $23.1 million, and the Health Resources and Services Administration (HRSA) at $50.6 million annually.”
Rep. Smith, the prime sponsor of HR 1058, along with chief Democrat co-sponsor, Rep. Mike Doyle (D-PA), singled out Sen. Lamar Alexander (R-TN), chairman of the Senate Health, Education, Labor and Pensions Committee, and Ranking Member Sen. Patty Murray (D-WA), and Majority Leader Mitch McConnell (R-KY) for praise.
“I would like to thank Chairman Alexander, Ranking Member Murray, and Leader McConnell, for pushing HR 1058 to where we are today: Senate passage,” Smith said. “The bill now moves on to the White House for the President’s signature.” Read excerpts from Rep. Smith’s floor remarks on House passage here.
The Smith-Doyle bill also helps adults with autism who are often misdiagnosed, underdiagnosed and overlooked and emphasizes that causes, diagnosis, detection, prevention and treatment of autism spectrum disorder (ASD) must be available throughout the lifespan of a person with autism. According to Drexel University’s AJ Drexel Autism Center, about 70,700 to 111,600 children “age out” into adulthood each year creating challenges for education, housing, employment and access to health care.
“The problem of ‘aging out’ of services is a real hurdle every parent or caretaker of a child with autism inevitably faces,” Smith said. “All children grow up and become adults, and children with autism then lose their education services. But autism is a lifetime neurological disorder, and adults with autism continue to need their services. The Autism CARES Act recognizes that and ensures that the federal government continues to help hundreds of thousands of parents by funding research and support programs and sharing best practices.”
- authorizes $1.8 billion for National Institutes of Health (NIH); the Center for Disease Control and Prevention (CDC); and the Health Resources and Services Administration (HRSA) reauthorizes and expands the Interagency Autism Coordinating Committee (IACC);
- adds new members of IACC from the Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development;
- increases from two to three IACC members who are self-advocates, parents or legal guardians and advocacy/service organizations;
- empowers the Health and Human Services Secretary to prioritize grants to “rural and underserved areas” and;
- requires not later than two years after enactment, a comprehensive report on the demographic factors associated with the health and well-being of individuals with ASD, recommendations on establishing best practices to ensure interdisciplinary coordination, improvements for health outcomes, community based behavioral support and interventions, nutrition and recreational and social activities, personal safety and more.
Smith also thanked the more than 35 non-governmental organizations that have endorsed his legislation, including the Autism Society of America, Autism Speaks, Autism New Jersey, the Association of University Centers on Disabilities, the Children’s Hospital Association, the National Council on Severe Autism, Congress and the National Down Syndrome Society.
There are an estimated 1.5 million children with autism.
Smith has also authored three other autism laws: HR 4631, the Autism Collaboration, Accountability, Research and Education (CARES) Act (PL 113-157) in 2014; HR 2005, the Combating Autism Reauthorization Act (CARA)(PL 112-32), in 2011; and HR 274, Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE) of 2000 (PL 106-310) in 2000.