John and Melissa Buckley’s son was diagnosed with autism spectrum disorder when he was about 18 months old.
Born five weeks early, Buckley’s son had missed some developmental milestones. But in the spring and summer of 2020, Buckley and his wife recognized indicators of autism – not walking or talking, not responding to his name and no interest in play.
“These are all things, presumably, that you’re hoping to see,” John Buckley said.
They had their son evaluated, and the diagnosis was like an earthquake for the Lower Macungie Township couple, John Buckley said.
Nearly two years later, the Buckleys’ son started preschool this fall in a classroom with peers primarily without ASD. John Buckley said a therapy widely used among children with autism called applied behavioral analysis led to a developmental explosion for their son.
“I very strongly believe there is no way my son could have gone to a school that is almost exclusively neurotypical kids without ABA therapy,” he said.
John and Melissa Buckley’s daughter, now 18 months old, was also diagnosed with ASD, and is undergoing applied behavioral analysis therapy to help her learn to communicate. John and Melissa Buckley said they did not want their children’s names published to protect their privacy.
As transformative as the emerging discipline can be for families such as the Buckleys, Pennsylvania is one of about 20 states that doesn’t license board certified behavioral analysts.
That means in addition to the commonwealth having no oversight of the discipline, health insurance often will not pay for applied behavioral analysis treatments making them more difficult for some patients to access and afford.
State Rep. Thomas Mehaffie, R-Dauphin, is the prime sponsor of legislation (HB19) that would create licensing criteria for applied behavioral analysts and assistants.
The bill passed the House with bipartisan support in February. But it has not moved out of the state Senate Consumer Protection and Professional Licensure Committee since then.
Mehaffie said the legislation could open up the benefits of applied behavioral analysis therapy to a much wider range of patients if the therapists were able to be licensed because they would be able to negotiate payments with health insurance companies.
For children with autism spectrum disorder, the therapy may be covered by private health insurance or Medical Assistance under the Autism Insurance Act, which mandates coverage of services related to autism.
When people with ASD turn 21, they may no longer have insurance coverage for the treatment.
“We’ve spent hundreds of thousands or possibly millions of dollars on autistic children but when they turn 21, the support just goes away,” Mehaffie said.
In addition to adults with ASD, applied behavioral analysis can be used to treat a range of behavioral health disorders including post-traumatic stress disorder and substance use disorders, Mehaffie said.
“Why aren’t we opening up as many venues as possible?” Mehaffie said. “We have so many problems with behavioral health.”
Although Penn State offers an applied behavioral analysis curriculum at its Harrisburg campus, many who receive degrees leave Pennsylvania to practice elsewhere because of the difficulty getting paid through insurance programs, Mehaffie said.
In addition to a tight timeline to run the bill in the Senate, where only seven scheduled session days remain, Gov. Tom Wolf has been a staunch opponent of new professional licensure requirements.
In a statement, a spokesperson for Wolf said the governor addressed professional licensure reform early in his administration.
The administration determined licensing requirements should be based on whether the unregulated practice of a profession puts the public at risk, whether they would limit access to the profession, and whether they constitute an undue burden on people who want to practice in the profession.
“The governor’s office, the Department of Human Services, and the Department of State have been engaged with the prime sponsor and stakeholders on this bill, and have expressed concerns about its potential to significantly limit capacity for children receiving Medical Assistance who are in need of behavioral services,” the spokesperson said.
The spokesman added Wolf would consider the bill if it makes it to his desk.
Keith Williams, the executive officer of Penn ABA, which promotes the practice of applied behavioral analysis in Pennsylvania, said the legislation is primarily a consumer protection measure.
“It protects families because if you have licensure you have someone who looks over these people who work with members of a vulnerable population,” Williams said.
Williams said applied behavioral analysis is also relatively new as a treatment, although the underlying principles were established in the 1950s and 1960s.
“It’s gotten a lot more prominence in the last several decades trying to help persons with special needs,” Williams said. “Even a decade ago you wouldn’t have heard of this as a field.”
John Buckley said the treatment his son and daughter have received has had an immensely positive impact on their lives.
For young children such as the Buckley family’s, applied behavioral analysis therapy is primarily play-based, presenting the children with decisions to make and rewarding them for appropriate responses. The parents are involved so that they can continue the practices at home, John Buckley said.
His son still receives about 30 hours of therapy a week. And John Buckley left his job at an Allentown law firm to make time for his children’s treatment.
“This is a full time job. It’s a big undertaking,” John Buckley said. “It has been great for him to be able to sustain these gains he’s made. It’s super rewarding to see.”
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