In The Politics of Autism, I discuss the congressional role in the issue.
Yesterday, President Biden signed the Autism CARES Act of 2024 into law. A release from Rep. Chris Smith (R-NJ):
Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism was signed into law this week.
Smith’s Autism CARES Act of 2024 will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).
“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor on December 16th.
“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this 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,” Smith said.
“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.
“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.
Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.
“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. 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.”
Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.
The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:
· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;
· Increase the number of NIH Centers of Excellence to seven 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; and
· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.
Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”
“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.
At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith 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.
