In The Politics of Autism, I discuss the congressional role in the issue.
A release from Rep. Chris Smith (R-NJ):
The House of Representatives today overwhelmingly passed (402-13) new comprehensive legislation (HR 7213) authored by Rep. Chris Smith (R-NJ) to provide more than $1.95 billion to reauthorize and strengthen the United States’ whole-of-government autism spectrum disorder (ASD) initiative through 2029. Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—now heads to the Senate.
Smith, who has authored four major autism laws to date, said his new legislation “will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible.”
“With substantive input from advocates in the autism community, my legislation will also help advance key research priorities and ensure enhanced collaboration between federal agencies and families and individuals with autism,” Smith said.
“This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research. I would like to thank Representative Chris Smith for his leadership on this important legislation.”
Smith’s legislation—which received unanimous approval from the House Energy and Commerce Committee in a vote (42-0) to send the bill to the House Floor earlier this year—has received strong support from the nation’s leading autism advocacy groups, including Autism Speaks, the Autism Society, the Autism Science Foundation, the Arc of the United States, the Profound Autism Alliance, and the Association of University Centers on Disabilities.
Specifically, the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 would:
· Authorize $1.95 billion—including $306 million in annual funding for the National Institutes of Health (NIH); $28.1 million in annual funding for the Centers for Disease Control and Prevention (CDC); and $56.3 million in annual funding for the Health Resources and Services Administration (HRSA);
· Direct the NIH to ensure research reflects the entire population of individuals with autism spectrum disorder, including the full range of cognitive, communicative, behavioral, and adaptive functioning, as well as co-occurring conditions and needs for supports and services, including and especially care necessary for physical safety;
· Increase the number of NIH Centers of Excellence and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well being of all Americans with autism;
· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism;
· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs; and
· Require a report on youth aging out of school-aged services, as well as recommendations to improve mental health outcomes and address related disparities in mental health care for individuals with autism spectrum disorder, including prevention, care coordination, and community-based services.
Smith, who has been a steadfast champion for the autism community for decades, stepped up his involvement on autism in 1997 when Bobbie and Billy Gallagher—parents of two small children with autism—from Brick walked into his Ocean County office looking for help, believing their town had a disproportionate number of students with autism.
In response, Smith brought federal agencies to Ocean County for an investigation—which found that autism prevalence rates were high not only in Brick, but in nearby communities as well—and authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.
