Behavior specialists in Pennsylvania who work with autistic children have a soon-approaching deadline to apply for licenses to keep doing their jobs. But parents and advocates say that the requirements and the process to apply are arduous.
When Act 62 passed, those in the autism community saw it as a victory. The 2009 legislation required private insurance companies to pay for services for those with autism — up to $36,000 a year. But it also required the Pennsylvania Department of State to license behavior specialists.
Some parents, advocates and specialists feel that these new licensure requirements could adversely affect autistic children — the exact opposite of what the requirements aim to do.
"For over 20 years we’ve had wrap-around services in Pennsylvania," said Luciana Randall, who heads the Autism Connection of Pennsylvania. "That's a system of care that was originally set up to keep kids out of institutional settings and out of the hospital if they had mental health issues. Going way back to my first clients, I had kids with autism that weren’t correctly diagnosed because it was early in the diagnosis."
Autism diagnoses have been on the rise over the last 20 years. The Centers for Disease Control and Prevention report that one in 50 school-aged children have an autism diagnosis.
Randall said she has been getting concerned calls from specialists and parents about the requirements and the specialists' ability to meet all of them in time.
"People could have been doing behavior specialist consulting for a couple of decades and have gone through lots and lots of training ... I know people with two master's degrees who will be completely ineligible to work and can no longer bill for his or hers services," she said.
According to The Department of Public Welfare, the requirements for behavior specialists are that they be a licensed doctoral-level psychologist or a licensed clinical psychologist or have a master's degree in special education or mental health. They must have completed 90 hours of relevant training and have completed at least 1,000 hours in direct clinical experience with those on the spectrum.
That poses problems for specialists who have been in this field since before the boom of autism diagnoses without a specific degree, as well as for those just getting out of school without 1,000 hours of work.
Without this license, insurance companies won’t cover the treatment they provide.
Rising Demand, Shrinking Supply
The Department of Public Welfare estimates there are between 2,500 to 3,000 behavior specialists in the state. Before Act 62, there were no uniform licensing requirements for them. But with the upshoot of children diagnosed on the autism spectrum, and with an increase of those needing these services, there is more of a demand for behavior specialists.
Randall said there are about 14,000 children in Pennsylvania who work with specialists. With the new requirements, the pool of specialists will shrink, and less than a third have begun the process of becoming certified, according to the Department of Public Welfare.
Autism is a neurodevelopmental disorder. There is no known cause and there is no cure. But there is treatment, which the behavioral specialists provide. A child with autism is prescribed a certain amount of hours with a specialist who spends that time providing them assessments and support at home, in school and elsewhere.
"We basically wrap around them and go wherever they go and wherever their needs are presented, that’s where we are," said Kara Kaylor-Stewart, a behavior specialist with Family Behavioral Resources.
She said with the processing of paperwork and new specialists possibly coming in and others getting pushed out, it could be detrimental to her clients, who have gotten used to her.
"In my case, I’ve had these clients for 12 years, so it’s pretty hard not to develop a relationship in all that time," Kaylor-Stewart said.
Kaylor-Stewart has the qualifications to become licensed, but she said the process has been arduous, including reaching out to colleges for transcripts, obtaining legal documents and submitting all of that information at different times to different offices.
She also supervises other specialists who won’t be able to apply for the license.
A Parent's Perspective
Leslie Walter is the mother of Lily, a 7-year old girl with autism. She said a behavior specialist's certificate on the wall is just one thing.
"As a parent, I want them to be educated, training and so forth, but a really big piece is the fit between them and the child," Walter said. "There may be really great BSCs out there that may not work well with my daughter at all. A lot of it is personality, creativity, compassion and caring."
Walter said it takes months to really understand Lily. She worries about what could happen with the interruption of services — or a different behavior specialist coming in — or what the effects on children and families could be of working with overworked specialists.
She said her daughter Lily would be in a completely different place without the dedicated assistance of a behavior specialist.
"I’m looking at people who have been doing this for 10 years, and back then they didn’t talk about autism," she said. "I have a special ed degree; we didn’t talk about autism, so it's not their fault. But they know autism now. Because they’ve been living it, and they’ve been working with our children."
For specialists who have been working in this field for a long time, but don’t have the right degree, they are, to an extent, simply out of luck.
"No, there will be no one grandfathered in," said Carey Miller, a spokeswoman for Department of Public Welfare, who is working with the Pennsylvania Department of State to make sure the paperwork processing is going smoothly.
If someone doesn’t have the right degree, they can return to school and get a new degree. She said because there were no previous requirements, this is just a way to ensure the workers are qualified to be working with the children.
"The law intended for behavioral specialists to obtain a license so the parent could feel more confident that the child’s services were being provided by a qualified individual," she said.
The deadline is in late May. There is an extension for those that have already started the licensing process and need more time for training.