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Parents Fight To Get New Autism Treatment Covered

Portland mom Anastasia Puha has her hands full. Not only does she have four little girls, but Mili, her four-year-old, is autistic. “(Her) speech didn’t develop,” she says. “Really sensitive to noise and light and texture and just pretty cranky, pretty cranky child.”

Anastasia Puha with four-year-old Mili

Anastasia Puha with four-year-old Mili

Kristian Foden-Vencil/OPB

Puha says Mili has tantrums where she’ll hit her head, scratch herself and bite. To reduce those tantrums, Mili has the relatively new treatment ‘Applied Behavior Analysis’ or ABA therapy.

“One of the biggest things that I think she learned from ABA is, we can go to the store,” she said. “Or we can walk into therapy together, before she would run away or throw herself down and you couldn’t really pick her back up. And so she’ll walk with me and that’s just amazing. Ha ha ha.”

Applied Behavior Analysis is expensive - because it involves one-on-one attention.  A 20-hour-a-week regimen can cost $50,000 a year.

Jennifer Kessel is Mili’s ABA therapist. She’s has a BA in psychology and is employed by ‘Building Bridges’ — a Portland company that offers in-home, one-on-one services.

Jennifer Kessel

Jennifer Kessel

Kristian Foden-Vencil/OPB

Kessel says ABA therapy works by breaking an activity down into very small pieces. So for example, if you’re going to teach children to brush their teeth, you’d start off by doing it all for them, step-by-step, several times. Then, you let them do just the last step.

“Maybe everything is done for them but turning off the water,” she said. “And then eventually working up to holding the brush, bruising the teeth. But small pieces so that instead of starting from the top down and having that anxiety about what comes next. The whole routine is laid out and then brought backwards.”

The Centers for Disease Control and Prevention estimates that one in every 88 children in the US suffers from autism. That’s a 78% increase since the CDC’s first started tracking numbers in 2000. The CDC says ABA therapy encourages quote: “positive behaviors and has become widely accepted among health care professionals.”

But that’s not the case for health insurance companies.

Mili’s insurance, Kaiser Permanente, originally denied coverage. But her mom contacted Paul Terdal, the father of two autistic boys. Terdal had worked through the insurance coverage appeals process.

He said, “What I did was tell people that I knew and providers, that ‘Hey, by the way, we did this for my kids.’ I want to help other people get through the process.”

Terdal says he helped about 14 Kaiser families go through the appeals process.  Puha says families with autistic children helped each other out.

She said, “We kept on, every family like ‘Try this. Do the appeals process because we knew the more people that do it, then we can show that it’s already supposed to be covered. Then maybe they’ll do the right thing and do it.’ And they did.”

In November, Kaiser Permanente issued a statement saying it is now providing ABA services for members with a medical need.

Tobi Rates is the executive director of the Autism Society of Oregon. She says it was welcome news, “We applaud it,” she said. “We’re thrilled about it. We want the other insurance companies to follow along.”

The state has two laws that she says should require insurers to cover ABA therapy — the ‘Mental Health Parity Act’ and the’ ‘Developmental Disabilities Act.’

But she says, there’s a catch, “Between those two, it says if you’re covering mental health issues, you have to include developmental disabilities, and that includes autism. It doesn’t specifically say how you have to cover the autism therapies or what therapies you have to cover.”

Hence the current situation where some companies cover ABA, while other’s don’t.

Kaiser did not make anybody available for an interview with OPB. But the problem for the company now is that if other insurers don’t also start offering coverage, Kaiser could end up attracting lots of expensive new customers with autism. That would drive up their costs.

Enter Paul Terdal — again. He’s now going after other insurance companies to provide coverage.

He said, “Providence, having seen what would happen if they went into external review, basically put their foot down and said, ‘Our contract isn’t going to cover this under any circumstances.’  And their letters always concluded with, ‘Your only alternative is to sue us in court.’ “

In a written statement, Providence did not directly address how it has responded to such requests for coverage.

Providence says it considers ABA to be experimental and investigational. It also says services related to developmental disabilities are specifically excluded from coverage.

Terdal is helping about 10 Providence families and they’re considering legal action.

Terdal is also working on a case against United Healthcare. United also provided a written statement, saying it doesn’t cover ABA in Oregon.

Terdal said, “We’re challenging United by basically saying, look, we have a law in Oregon, two of them, that require coverage of autism. It would be no more valid to exclude the leading treatment for autism than it would be to say exclude Caesarean sections for maternity care. And we’ve asked the insurance division to take action on that and they’re thinking about it.”

The Oregon Insurance Division is thinking about it. Spokeswoman Cheryl Martinis says the division is seeking advice from attorneys at the Department of Justice, “We’ve asked them whether ABA therapy is required under current Oregon law, and if so, under what circumstances. … So we’re awaiting some guidance.”

Martinis thinks that may come in a few weeks.

Meanwhile, Terdal continues his fight with Oregon insurers. He says he hasn’t found the right case to push at Regence, but he’s looking.

In a statement, Regence said it doesn’t provide coverage for quote: ‘investigational behavioral treatments.’

It equates ABA to teaching — rather than a medical therapy to be covered by insurance.

Pacific Source lost a major legal battle on the issue in 2010.

In a statement, Pacific Source says ABA therapy is covered, but it has to be delivered by an “eligible health care provider.”

And that’s a big issue.

State Senator Alan Bates, a doctor from Medford, is working on a bill that would create a certification system for ABA therapists. It would also get ABA included in insurance coverage, and establish which children should receive the therapy.

He says it’s understandable why insurance companies want a certification process, “A lot of the work is something it doesn’t take a lot of education for, but takes a lot of time and you don’t want to be paying someone $100 an hour for doing something that could be done for $15 an hour with the same outcome.”

He says if a bill is to pass, he needs parents and insurance companies to come to some agreement.

If they don’t, he says, he won’t take a proposal to the floor because it simply wouldn’t survive.

Autism ABA therapy Applied Behavioral Analysis