Asbury Park Press article on Smith's Autism CARES Act of 2019'$1B Autism Bill Would Bolster Support for Those Who 'Age Out''
Jerry Carino, Asbury Park Press | Feb. 8, 2019
Over the past several years, as diagnoses mushroomed, society has developed an increasing number of resources to help children with autism and their families.
But once those children become adults, the resources become scarce.
A $1 billion bill introduced in the House of Representatives Thursday seeks to, among other things, remedy that dropoff in support.
The bipartisan bill, named the Autism CARES Act of 2019 (HR 1058) is sponsored by Republican Chris Smith of New Jersey, whose 4th congressional district stretches across Monmouth, Ocean and Mercer counties, and Democrat Mike Doyle of Pennsylvania.
A Senate version of the bill was introduced Friday by New Jersey's Robert Menendez, a Democrat, and Mike Enzi, a Republican from Wyoming.
“Our new legislation will reauthorize vital federal research on earlier interventions for children with autism and expands funding for critical research, education, housing, and other programs that assist the countless children and adults on the spectrum, and their families,” Smith said in a statement. “The bill will also help ensure that the estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs and enter adulthood are supported, as many individuals and communities are unprepared for this transition.”
That last part is music to the ears of Millstone resident Amy Rohrer, whose 18-year-old son Tim Rohrer has autism.
“It’s so needed,” she said via phone Thursday night. “It’s kind of scary as a parent, not knowing who’s going to take care of your children when you’re not around to take care of them. I’m fortunate that Tim is high-functioning — he speaks, he drives — but not all those on the spectrum are like that.”
New Jersey has the highest rate of autism in the United States, with one in every 34 children identified with autism spectrum disorder, according to a study by the Centers for Disease Control and Prevention released last year.
In November, Tim Rohrer made a splash by writing a teaching guide on how to be a good influence to people with disabilities. It was published by the New Jersey Coalition for Inclusive Education and widely circulated on social media. Although he walked with his class at Allentown High School’s graduation last spring, Tim has two more years of schooling available after June before he “ages out” of his education.
“We are at the point where we’re looking for a career for him, and there are not enough employers willing to give him a chance,” Amy Rohrer said. “If they could develop more programs and opportunities, that’s huge.”
“I cannot tell you how many parents I’ve met over the years who lay awake in bed worrying what will happen to their kids when they grow out of school-based support, or what will come of their adult children on the spectrum when they are gone someday,” Menendez said Friday in unveiling the Senate bill. “These hopes and dreams and fears have been at the forefront of my mind while drafting the Autism CARES Act of 2019.”
The bill would authorize funding for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA) over five years, reauthorizing a similar bill from 2014. It would fund a combination of research, detection and intervention programs, and cover the expansion of autism-related activities.
According to a news release from Menendez, Autism CARES 2019 would:
· Authorize research under the National Institute of Health to address the entire scope of autism spectrum disorder.
· Designate regional centers of excellence for autism spectrum disorder research and epidemiology.
· Direct activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection.
· Increase funding to $23.1 million to the CDC for developmental disability surveillance and research.
· Increase funding to $50.6 million to the Health Resources and Services Administration for education, early detection and intervention, with priority for new grants given to applicants in rural or under-served areas.
· Require the Department of Health and Human Services to provide a report to Congress on the health and well-being of individuals of all ages with autism spectrum disorder and other developmental disabilities.
Crucially, for those with autism who are entering adulthood like Tim Rohrer, it amends sections of the Public Health Service Act to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages — not just children.
Staff writer Sarah Nolan contributed to this report. Staff writer Jerry Carino: email@example.com