Debating the cost of autism therapy

Parents told of the exhausting work of raising an autistic child in a Sioux Falls forum Thursday that bubbled over with frustration and one sharp exchange over the role of insurance companies.

“There’s only so much energy you have,” said Krishna Mastel, 39.

Mastel, a Wakonda resident, was one of a dozen speakers to address a state-sponsored session that drew 60 people to an auditorium at the Ramkota. The session was one of four across South Dakota this week that resulted from legislation this year regarding autism and whether insurance companies should be required to pay for therapy. Legislators defeated a bill in March that would have required coverage of an intense form of therapy called applied behavioral analysis, or ABA. They then passed a law setting up a summer study, with a report due Nov. 15.

Several parents described the difficulty of raising an autistic child and the progress they saw when a child received the ABA form of therapy.

Some spoke of their surprise to learn that Wellmark, the state’s biggest insurer, would be dropping its coverage of the ABA therapy. The therapy costs more than $100,000 a year.

“We’re a middle-class family. If you’re an autism family, you’re going broke fast,” said Richard Zeck, a Brookings resident whose 12-year-old son lives with the disorder.

Zeck said his family lived 11 years in North Dakota, where state policy mandated generous coverage of applied behavioral analysis, then moved to South Dakota, where there was no help.

“The difference is appalling,” he said of the two Dakotas.

Renee Larson, a Lake Preston resident, spoke of her son, who was diagnosed at 10 and now is 27 and living at a state institution in Redfield. She told of the rocky unpredictability of raising him. His manner would go from verbal to nonverbal and back to verbal with good days and then bad days when her son wouldn’t get out of bed. He was forcibly removed from home a year ago. A high point was this spring.

“He called me on the phone and wished me happy Mother’s Day,” she said.

Her husband, Ron, told the moderators the state needs to mandate the coverage.

“Autism is here to stay. We need our state ... support ... with proper legislation,” he said. “I thank you for organizing it,” he said of the forum, “and I hope you get something done.”

The audience applauded.

Autism is a disorder that displays itself in difficulties in seeing, hearing, repetitive behavior or relating to others. Applied behavioral analysis is a form of therapy, often running eight hours a day, that helps with basics such as handwriting, eating and social skills such as learning to say goodbye with eye contact.

A spokeswoman for Avera Health spoke about concern for families. A state official said earlier that Avera has the most generous autism coverage of major carriers.

Dr. Tim Gutschall, chief medical officer for Wellmark in Des Moines, then addressed the group. He listed several forms of less intense autism therapy that Wellmark covers, then told why Wellmark does not cover the ABA therapy.

Autism is not entirely a medical issue, but also an educational issue, and the ABA therapy has had inconsistent results, he said. He asked why coverage should be mandated when the science is changing so fast.

With that comment, Ron Larson, hurried back to the microphone to scold Gutschall.

“We’re not here to be lectured,” Larson said. When insurers such as Wellmark take a position on legislation, “they’re going to make money off it,” he added.

Gutschall said afterward that Wellmark decided at the end of last year to stop covering the ABA therapy.

Some parents noted after the session that, while Wellmark’s decision saddened them, there’s been a transition lasting several months where Wellmark has continued coverage for those already insured.

“They are still covering it, and we are thankful for that,” said Wes Brown, 31, an Arlington farmer who attended with his wife, Amanda.

Brown said the family received a letter in November saying Wellmark would be discontinuing the benefit. Yet their son, Hudson, who turns 5 in September, has continued to receive the care with Wellmark covering the expense. The Browns are hoping that will continue another year under a grandfather arrangement with the coverage, though they do not have a formal agreement promising that and Wellmark is under no obligation to do so.

“ABA is no longer a covered service,” Brown said.

Their son has been receiving the therapy with two sessions a day, each four hours long, six days a week. It would cost $12,000 a month, Brown said.

Lisa Stanley, 38, of Pierre, said she also received a letter from Wellmark last fall. It said the insurer would be scaling back its coverage for autism therapy and would no longer pay for ABA. Nonetheless, Wellmark has allowed payments to continue this year in a transition period to the benefit of her son, Christian. Christian turns 6 in September and will be finishing two years of ABA therapy that have been essential in his development, Stanley said. He still has tantrums. He had a meltdown Thursday when he was denied a second popsicle after school, his mother said. But he is starting school this fall without an individual education plan, or IEP, a tool schools use with autistic children. That’s a sign of how much he’s improved, she said.

“I’m not here to vilify Wellmark. I get why they did what they did,” she said. “It was $10,000 to $12,000 a month that Wellmark was covering.”

The issue for the state is to realize the benefit of costly coverage now as compared with higher costs later if an autistic adult is institutionalized at public expense.

“It’s cheaper to treat it at the front end,” she said.

Mastel, the Wakonda resident, told of the challenges of raising her son, Eli, 8, a third-grader. A ride in the car, time for a bath, any simple transaction can produce a meltdown. His behavior often is unmanageable, she said. The family also lost coverage for ABA therapy through another insurer. They have continued it the past two summers, at more than $1,000 a month out of their pockets.

It’s an exhausting situation, but also a love story, she said.

“He’s very bright. It’s so overwhelming for him to break down those basic skills,” Mastel said. “If he was here right now, you’d probably fall in love with him.”

At issue

The South Dakota Legislature is studying whether to require insurance companies to cover an intense form of therapy called applied behavioral analysis. The therapy costs $100,000 per year.