Congress passes $1.8 billion autism bill; seed was planted by Brick parents in 1990s

Jerry Carino, Asbury Park Press Sept. 20, 2019

As the Autism CARES Act goes to President Trump’s desk, sponsor Rep. Chris Smith recalled the Gallagher family’s key role in launching federal research.

One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.

Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder.  

“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”Times have changed. On Thursday the U.S. Senate unanimously approved the Autism CARES Act, sending the $1.8 billion package to President Donald Trump, who is expected to sign it into law.

Smith was the prime sponsor of the House of Representatives’ version of the bill, his fourth autism-related measure to pass through Congress since that meeting with the Gallaghers. Fellow New Jerseyan Robert Menendez sponsored the Senate version.

The bill will authorize funding for programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration over five years, reauthorizing a similar bill from 2014. It will fund a combination of research, detection and intervention programs, and cover the expansion of autism-related activities.

Tim Rohrer, a Millstone teen with autism who has become a sought-after speaker after he published a guide on how to treat people with disabilities. Thomas P. Costello and Jerry Carino, Asbury Park Press

“We’re ecstatic,” Smith said. “What a difference this is going to make.”

One stated aim of the legislation is to address the needs of those who have “aged out” of most available autism services after turning 21. It amends existing law to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages — not just children.

“Every year 50,000 young people who become adults are on the spectrum, and they’re going to need jobs, education, housing,” Smith said. “We’re going to try to make sure nobody is left behind.”

Menendez said the legislation “marks a leap forward in federal autism policy by recognizing the needs to invest in research to address an individual’s evolving needs across a lifespan.”There are an estimated 1.5 million American children with autism, a population that exploded in recent years. New Jersey has the nation’s highest rate, with 1 in every 34 children identified with autism spectrum disorder, according to a study by the Centers for Disease Control and Prevention released last year.

On Thursday, as Congress sent the Autism CARES Act to Trump, Smith thought of the Gallaghers, whose two toddlers Alana and Austin are now adults in their 20s. The family’s push back in 1997 helped lead to the enactment of Smith’s first bill on the issue — the Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which opened the door for comprehensive federal funding.

“There was very little research going on and the Gallaghers were desperate for help,” Smith said. “The CDC didn’t want my first bill. Now they’re more than happy to talk about it.”

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