A Poland couple with an autistic child says the cost of the expensive, specialized therapy that has worked wonders for their son will not be covered under the Ohio mandate that insurance carriers provide coverage for autism treatment.
The directive, signed Jan. 9, by Gov. John Kasich, is a welcome and positive first step, but it is far from being all-inclusive, say Tami and Art Volpini.
“It’s progress, and we’re hopeful that eventually it will pertain to all insurance companies. Right now, it’s just for state employees and some open-market insurance. It doesn’t help us,” say the Volpinis, whose son, Artie, 8, is nonverbal.
They are among those excluded from the mandate, effective in 2014, because, in their case, the health insurance through Art’s employer does not include autism coverage.
The coverage provided for some therapies by Art’s insurance is minimal compared with “what we do with applied behavioral analysis [ABA], which is super-effective for our son,” Art said.
“We pay for most of Artie’s therapies out-of-pocket ... about $1,000 a month,” Tami said.
Art’s employer-based health insurance covers certain therapies that Artie needs, such as speech and occupational, that nonautistic children also might require, but the insurance does not cover therapies that are tied to an autism diagnosis.
The Volpinis believe that if they could afford more than the two hours, four times a week of ABA therapy that Artie gets, his improvement would be even more dramatic.
“It’s a financial burden. We include some Youngstown State University student therapists as part of Artie’s ABA team to help manage costs,” Art said.
Artie’s ABA team is led by Dr. Leah Gongola of Huntsburg, Ohio, who said she treats all children but specializes in autism.
Applied behavior analysis, a science devoted to understanding human behavior — why people do what they do and what motivates them — has been around for decades, Dr. Gongola said.
The therapy involves breaking down specific activities and skills, such as appropriate table manners, into very small steps and charting how a patient does with the skills and what incentives produce the best results.
“If we don’t see progress, we try something different,” Dr. Gongola said.
For instance, Artie is being conditioned to go to the barbershop by taking him there to get used to the environment and talking to him about it before attempting the actual haircut.
Tami said she used to have to cut Artie’s hair while he was sleeping to avoid a meltdown. Now, she trims his hair while he is sitting in a chair at home. The ultimate goal is to get him to sit still for a haircut at the barbershop.
Unfamiliar surroundings and people and sounds can over-stimulate Artie and cause a meltdown (tantrum), during which he could hurt himself or others. Even at home where everything is familiar, Artie wears special headphones that filter out noise.
Tami said autistic children’s senses are heightened. Artie was diagnosed with autism at 3.
Tami said she was familiar with autism because she had worked in special-education for several years.
“But it’s different when it’s your own child. It is devastating to find your child is anything but typical,” she said.
Artie, who formerly attended the Rich Center for Autism at YSU, is now in a Mahoning County Educational Service Center special-education class housed at Poland North Elementary School.
Through ABA therapy, the Volpinis say Artie’s receptive language has improved, his voice skills are better, and he doesn’t throw tantrums as often.
“We’ve tried many other therapies and never saw the improvement we are seeing now. We have seen other families that have tried other things that have worked, but for us, ABA works best,” Tami said.
Before ABA, he might bite himself or someone else.
“To give him a bath, one of us had to sit in the bathtub and hold him down while the other washed him,” she said.
“We couldn’t turn back. Even after 10 or 12 ABA therapist visits, we could see the difference,” Art added.
Art and Tami try to make adults and other kids feel comfortable around Artie.
They attend church and vacation at the beach. And because of ABA therapy, Artie can go to restaurants and to the movies, something he never could have done before.
“We don’t feel restricted in doing things that typical families do, but there are challenges,” Art said.
Though Artie has to be the focus, they work hard to make sure their other children, Ellianna, 6, a student at Poland Elementary North, and Dominic, 2, who are developing typically, don’t feel left out.
It can be confusing for Artie’s siblings, however.
Once, Ellianna asked if all brothers don’t talk and wanted to know if she would get autism when she is 5, Tami said.
“We have seen other families try other therapies that have worked,” Tami said. “But for us and Artie, ABA works the best. It is the only proven successful therapy for autistic kids.”
The Volpinis say their aspirations for Artie are that he become as independent as possible, function to the best of his ability and be happy.
“We wish he could get as much ABA therapy as possible instead of what we can afford. We just wanted the best for him that we could do,” Tami said.
“It is sad that more people don’t benefit from ABA simply because they can’t afford it. The higher functioning autistic people are, the better off all of society would be,” she added.