Autism Caucus sponsors event on Capitol Hill focusing on needs of ‘aging out’ youths, adults
Reps. Smith, Doyle Help Organize Autism Briefing
The Congressional Coalition for Autism Research and Education (CARE), co-chaired by U.S. Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), hosted an autism briefing on Capitol Hill April 23 entitled the "Autism and the Aging Out Crisis" to highlight the need for increased federal support for improved transition services for the youth and young adults with autism and their families.
“Every year 50,000 young people on the autism spectrum transition into adulthood and are in the process of losing access to the vital educational, therapeutic and other services which enable them to live full, independent and successful lives,” said Smith, Chairman of the House Subcommittee that oversees global health. “Individuals with autism in the aging out generation find themselves entering into a system unprepared to meet their needs, and as a result face shrinking opportunities—and in many cases even regression.”
The event featured experts on Autism Spectrum Disorder (ASD) and transition planning, including: Association of University Centers on Disabilities (AUCD) representative Dr. Anthony Antosh; Director of the Paul V. Sherlock Center on Disabilities at Rhode Island College (UCEDD), and; self-advocates including Jonathan Kratchman, a high school senior from Hamilton, N.J. who is an intern Smith’s district office.
About 1 in 68 children in the U.S. has been identified with ASD, according to the most recent estimates from the Center for Disease Control (CDC) released in 2014. In Smith’s home state of New Jersey, 1 in every 45 children has ASD, the highest rate in the study. Internationally, it is estimated that 67 million individuals are on the spectrum.
“High school students are given services and supports to help prepare them for young adulthood. However, when they graduate, they face a support cliff—their services end and limited options remain available to continue development,” Smith continued. Click here to read Smith’s floor remarks on the Congressional Record.
Smith’s initial involvement with autism came in 1998, when a Brick Township, N.J. couple who had two children with autism approached him with fears that an autism cluster existed in their community. The meeting led Smith to request that the federal government conduct an investigation into a possible autism cluster in Brick. The investigation, one of the first federal studies on autism, not only showed higher rates of autism in Brick but also demonstrated that rate was not an isolated case, but a window to a nationwide phenomenon.
He then authored and shepherded into law the landmark 2000 Autism Statistics, Surveillance, Research and Epidemiology Act (Title I of the Children’s Health Act, PL 106-310). He also authored two other autism laws—the 2011 Combating Autism Reauthorization Act, (Public Law 112-32), and the 2014 Autism CARES Act (PL 113-157)—which combine to build on and expand the critical research, services and supports for families impacted by ASD.
Smith is now working to bring the lessons learned in the U.S. to the global stage—where studies in Asia, Europe, and North America indicate that an average of about 1 percent of the population has ASD. Smith has chaired two hearings on the global impact of autism, and in the 113th Congress, he introduced HR 4631–the Autism Collaboration, Accountability, Research, Education, and Support Act, and H.R.3054–the Global Autism Assistance Act. The latter bill is now part of HR 1468–the Global Brain Health Act of 2015, introduced in the current 114th Congress.
Smith’s most recent law authorized $1.3 billion over five years, including $22 million for the Developmental Disabilities Surveillance and Research Program; $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 for the Interagency Autism Coordinating Committee.