Brick Family Helps Inspire Major New Autism Legislation

This past Monday, major autism legislation initially inspired by a Brick family and authored by Rep. Chris Smith (R-NJ) was signed into law by President Donald Trump.

The bill, called the Autism CARES Act of 2019, authorizes the federal government to spend $1.8 billion over the next five years to help children and adults with autism by funding research, early detection and treatment.

Smith, a Republican, sponsored the bill with Rep. Mike Doyle, a Democratic congressman from Pennsylvania.

Smith has represented New Jersey's fourth congressional district for decades, and he recalls he first got involved in autism work in September of 1997, when two constituents, Bobbie and Billy Gallagher of Brick, walked into his Ocean County office. The Gallaghers were parents of two young children with autism and they were looking for help.

To this day, the Gallagher family continues to work with Smith on autism advocacy issues, including the "aging out" problem. The 2014 photo above shows Rep. Smith with Bobbie and Billy Gallagher at the SEARCH Day Program, a school for kids with autism in Ocean Township.

An increasing number of people with autism are entering their late 20s and 30s, and phasing out of public schools and other programs. According to Drexel University’s AJ Drexel Autism Center, anywhere from 70,000 to 111,000 autistic young adults "age out" into adulthood each year, creating challenges for education, housing, employment and access to health care. It's as simple as its put by Mai Clearly, a Middletown mom who runs a farm for adults with autism, as she told Patch: "Children with autism grow up."

As such, a big part of the bill will go to expanding government programs for adults with autism.

“Aging out of services is a hurdle every parent or caretaker of a child with autism inevitably faces,” said Rep. Smith. “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. 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.”

Specifically, the Autism CARES Act will give the National Institutes of Health (NIH) $296 million, the Centers for Disease Control and Prevention (CDC) $23.1 million and the Health Resources and Services Administration (HRSA) $50 million. The money will be spent to do the following:

• reauthorizes and expands the Interagency Autism Coordinating Committee
• 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” and
• 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 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.

“The Autism CARES Act is yet another hard-won victory borne out of Congressman Smith’s and his colleagues’ dedication to the autism community and bipartisan collaboration,” said Suzanne Buchanan, Executive Director of Autism New Jersey. “Their work across the aisle and tireless efforts to retain critical components of the legislation remind us what is right and good about our federal government. Individuals with autism and their families are a federal priority, and the Autism CARES Act is a smart investment that will help individuals with autism today and for generations to come.”

Smith has also authored three other autism laws: HR 4631, the Autism Collaboration, Accountability, Research and Education (CARES) Act (PL 113-157) in 2014; HR 2005, the Combating Autism Reauthorization Act (CARA)(PL 112-32), in 2011; and HR 274, Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE) of 2000 (PL 106-310) included as part of the Children’s Health Act in 2000.

Related: Tour Oasis, A Working Farm For Adults With Autism In Middletown