WASHINGTON, DC — Nearly $2 billion in research funding to help children and adults with autism — legislation authored by Rep. Chris Smith (R-4th District) — has been signed into law by President Donald Trump.
The Autism Cares Act of 2019 will fund critical biomedical autism research, as well as the development of best practices to enhance the lives of persons with autism, said Smith, who co-sponsored the bill with Rep. Mike Doyle (D-Pa.) “We need answers now and treatment options and interventions that work.”
Smith said that the new law expands government programs to include older persons with autism “who were — and are — often misdiagnosed, underdiagnosed and overlooked.”
Specifically, aging out of services is a hurdle every parent or caretaker of a child with autism inevitably faces, Smith said. “Children grow up and become adults, and then lose their education and support services. But autism is a lifetime neurological disorder, and young adults with autism continue to need their services,” he explained.
Between 70,700 and 111,600 children ‘age out’ into adulthood each year, creating challenges for education, housing, employment and access to health care, according to the AJ Drexel Autism Center at Drexel University, Philadelphia.
“The Autism Cares Act recognizes the problem of aging out and ensures that the federal government continues to help hundreds of thousands of young adults with autism and their parents by funding research and support programs,” said Smith, whose district represents Belmar and Lake Como.
Specifically, the Autism Cares Act of 2019:
- Authorizes $1.8 billion, including annual funding for the 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 million.
- 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.”
- Requires that not later than two years after enactment, a comprehensive report on the demographic factors associated with the health and well-being of individuals with autism spectrum disorder (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.
New Jersey remains the nation’s leader in having the highest percentage of children with autism spectrum disorders, according to the federal Centers for Disease Control and Prevention.
In its latest study, the percentage of children with ASD increased in the state from about 2.5 percent in 2012 to about 3 percent in 2014. That translates into one of every 34 children in New Jersey has some form of autism, with boys 4 percent of boys identified with ASD, compared to 1 percent of girls.
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