Putting a price on autism in Oklahoma

Pilot program finds a lack of behavioral practitioners who can work with children

BY MICHAEL MCNUTT
Published: October 27, 2008

Oklahoma lacks enough therapists and behavioral specialists to take care of the state’s autistic children, according to the preliminary findings of a pilot program.

Thirty families selected to take part in the autism two-year pilot project each could spend up to $12,360 a year on services for their autistic child.

"What we discovered was there are so few providers of those services to these families that the spending on the behavior therapies was pretty small,” said Jim Nicholson, director of the developmental disabilities division of the state Department of Human Services. "There’s a lack of service providers that had that kind of specialty training.
"There aren’t enough, particularly, skilled behavioral practitioners,” he said.

Each family on average spent about $4,500 a year on services for their autistic child, he said.

The pilot program is to expire at the end of next month, sooner than expected because DHS officials "learned what we had hoped from the pilot,” Nicholson said. "The pilot did its job, and two years was enough.”

It’s unknown how many autistic children are in the state. According to the national Centers for Disease Control and Prevention, one in every 150 children in the U.S. is diagnosed with autism. It is considered the fastest-growing developmental disability. Research indicates early intervention can help.

A parent’s reaction
Deborah Decker of Norman, a parent whose family was chosen to take part in the study, said she is disappointed the program is ending.

"It just opened up a lot of avenues that we wouldn’t have had otherwise because it’s just so expensive,” said Decker, who developed a plan for her 6-year-old autistic son. "It was nice just to have that money to really do some intensive treatment with him.”

Parents in the program were told how the money could be spent and what services might be best for their child, Decker said. Each family drew up a budget on how the money would be spent.

Decker said her family spent about $7,000 a year and would have spent more had more services been available.
Most of the money her family spent was on applied behavioral analysis, which most insurance companies don’t cover, she said. Other expenses were for therapy for her son and occasional baby-sitting expenses.

She said she spent more than the program’s average because her family was able to hire applied behavioral analysis tutors from their public school district. Because of the applied behavior treatment, her son now can answer "yes” and "no” questions, she said.

Nicholson said the pilot program also looked at ways families with autistic children could support each other. But results showed parents were so exhausted from taking care of their own children they were too weary to take on the task of helping others, he said.

Of the 30 families selected to take part in the program, 15 were from the Oklahoma City area and 15 were from the Tulsa area.

Several parents who came to the state Capitol earlier this year to speak in favor of autism legislation said they pay thousands of dollars each month for treatment for their children, with some traveling out of state for help. In most cases insurance won’t cover all the fees.