Seven years after families began asking the Oregon Insurance Division to intervene on their behalf, the state's insurance regulator announced today it will issue a formal bulletin, clarifying that insurers cannot refuse to cover a costly therapy for autistic kids called Applied Behavior Analysis.
The decision comes a week after a federal judge ruled that the Providence Health Plan broke federal and state law by denying coverage for the treatment.
Since 2007, families have won more than 20 appeals to Independent Review Organizations after insurers failed to pay for ABA, which for more than a decade has been considered medically necessary, effective and the national standard of care to treat children with autism.
In 2010, a federal judge in Portland ordered PacificSource to pay for the treatment after the insurer argued the therapy was experimental and educational. "The great majority of the studies in the record indicate that ABA therapy is not only supported by decades of research, but is one of the only autism treatments which has consistently shown measurable success in improving the lives of autistic children," the judge ruled in that case.
California ordered its insured to stop denying coverage in 2011.
Meanwhile the Oregon Insurance Division told families that, while it had authority to take enforcement action, the division "does not believe it has authority to enforce mandated coverage for ABA therapy," according to correspondence.
In 2013, a senior analyst in the division drafted a policy memo that echoed the argument of insurance companies: covering ABA treatment is not required by law. He then shared that draft with industry executives. That position was later adopted by Gov. John Kitzhaber's heath care advisor Sean Kolmer, says Paul Terdal, the father of two autistic children. Terdal met repeatedly with Kolmer in his campaign to get the state to force insurers into compliance.
But Terdal says Kolmer did not help. Kolmer declined to be interviewed.
Terdal applauds the insurance division's directive.
"It's great. I'm really glad [Insurance Commissioner Laura] Cali is moving forward with this. It's time. Let's go," Terdal says. "What's going to be tricky, she's now going against the governor's office. Because the [Public Employees' Benefit Board] is now doing exactly what Providence has been doing. So they are pretty exposed."
The PEBB, which provides health care coverage for 50,000 state employees and 80,000 of their dependents, is facing a lawsuit of its own for refusing to cover ABA.
The governor's spokesperson could not immediately be reached for comment. But Eleanor Hamburger, the lawyer who filed suit against PEBB, said last week's ruling will help them in their fight to force PEBB to comply.
Until now the state has argued that it is not required to adhere to Oregon law. But last week's ruling also found that failing to provide coverage violates federal law.
"The writing in on the wall," says Eleanor Hamburger, the lawyer who filed suit in that case. Hamburger has filed suit against MODA, Regence BlueCross BlueShield and that State of Washington for failing to provide coverage of ABA when the treatment is prescribed as medically necessary.
"We would hope just like health care authority in Washington State, that PEBB would reach out to us and resolve this,â she says.
Today's move by the Insurance Division is exactly what Brenna Legaard and her husband Scott Fournier hoped for when they filed suit against Providence last year on behalf of their 7-year-old son.
"The commissioner has decided that other families won't have to fight for their kids' futures like we had to fight for ours,â Legaard says. âItâs been very difficult for us, but itâs definitely worth it.â
The fight started for Legaard and Fournier in 2012, after their son was diagnosed with autism. They were young professionals deep in student loan debt and saddled with a mortgage for a house they bought at the height of the market.
Their son began throwing hours-long tantrums, screaming at the top of his lungs, to the point that both Legaard and Fourier suffered hearing loss. They tried restraining him, holding him, ignoring him, putting him in time out. And they had a second, younger child to consider.
Legaard describes those years as "like living in a warzone."
"He would just fall apart. He's a sweet, sweet boy, and he's screaming because he's hurting," Legaard said. "No one teaches you how to handle that."
In 2012 his doctors prescribed 20 to 30 hours of ABA, but Providence refused to pay. Instead Legaard and Fourier paid out of pocket for what they could, and took money from their retirement plan.
With the case pending Providence in February agreed to cover ABA therapy for Legaard and Fourier's son. Now he attends an ABA program in Portland called Building Bridges.
"It's like Building Bridges gave him a world decoder book," Legaard says.
UPDATE, 4 p.m. Aug. 14: Gov. John Kitzhaber says he's prepared to adjust the state's health plans to reflect his insurance division policy.
"I support the Oregon Insurance Division providing clarity to families and providers on insurers' responsibility to cover this treatment for autism," he tells WW through spokeswoman Melissa Navas. "Once the insurance division's work is done, I expect PEBB will review the bulletin and adjust plans to achieve consistency."
The Division's bulletin will state that insurers cannot exclude coverage of ABA therapy for autism from their policies or broadly deny payment for ABA therapy.
But Hamburger, who filed suit against PEBB in Marion County Circuit Court in April, is waiting to celebrate until PEBB stops issuing blanket denials. She says Washington State made a similar promise two years ago, and it still has no policy in place.