New law grants $1.8 billion federal funding for autism research

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 was signed into law by President Donald Trump on Sept. 30.

The current Autism CARES Act is a reauthorization of the Autism CARES Act of 2014. The new act extends funding for five more years and authorizes $1.8 billion for autism research and programs to be divided between Center for Disease Control and Prevention (CDC), National Institutes of Health (NIH) and Health Resources and Services Administration (HRSA).

Joe McCleery, Ph.D., executive director of academic programs at the Kinney Center for Autism Education and Support, said a significant part of the funding will focus on the transition from adolescence to adulthood for people with autism spectrum disorder (ASD), a main research focus of the Kinney Center.

“A lot of their life is spent in adulthood the majority of their life, so the more independent we can make them the longer their life will be, the reduced cost it will be on society,” McCleery said.

Rep. Chris Smith of New Jersey’s 4th district and Rep. Mike Doyle of Pennsylvania’s 18th District of co-authored the bill.

According to the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) study, New Jersey has the highest ASD prevalence out of the 11 ADDM sites that were in the study. One in 45 children were diagnosed with ASD.

McCleery said many student scholars at the Kinney Center are from New Jersey and Pennsylvania so it is important that they bring the knowledge they gained from Kinney back home.

“We are training students who are going into all kinds of fields and those students are going back to their home areas,” McCleery said.

According to the CDC, the number of ASD diagnoses have increased from one in 150 to one in 110 from 2007 to 2009. In 2012, when the ASPIRE program at the Kinney Center launched, the rate of people with ASD was one in 88. Currently, the number of people diagnosed with ASD is one in 59 according to the CDC’s ADDM.

Abby Jayroe, M.B.A., director of operations of the Kinney Center, said more funding is important to support the increasing amount of people diagnosed with autism.

“Just knowing ways to provide tools to these individuals to be successful in life is super important,” Jayroe said.

Although the Kinney Center is not directly affected by the funding from the new law because they do not receive federal funding, there are still some changes that indirectly affect the Kinney Center, including the larger focus on the lifespan of those with autism instead of focusing on children with autism, according to Angus Murray, M.S., executive director of the Kinney Center.

“I think the needs don’t fall off once people turn into adults,” Murray said. “They still have the same issues, the same problems that arise, and if we want these folks to be happy and successful members of society we have to be able to support them during their lifetime.”

Smith recognizes that it is important that focus still be put on adults as well as children who have autism because it is a lifelong neurological disorder.

“All children grow up and become adults, and children with autism then lose their education services,” Smith said in a press release. “The Autism CARES Act recognizes that and ensures that the federal government continues to help hundreds of thousands of parents by funding research and support programs and sharing best practices.”

Maggie Wallace ’20, a case manager for the Kinney Center sports program, is working towards becoming a board certified assistant behavior analyst and plans to continue to work with individuals on the spectrum after graduation.

Wallace agrees that the reauthorization is important because without the continuous support of the bill and the research it has provided, there wouldn’t be as good of an understanding of ASD as there currently is.

“Without this law it wouldn’t really be possible to understand all of what autism is and the various behaviors and interventions that can be used,” Wallace said. “Without the Autism CARES act it would be concerning as to whether or not information would then be passed along.” 

Murray believes the reauthorization of the bill will leave a big impact on the Kinney Center.

“The more funding there is for the programs the more folks we can serve, the better we can serve them,” Murray said. “Even if these breakthroughs and changes happen somewhere else, we can then see what they’re doing, learn from them and bring that here to the Kinney Center.”