Elie, who lives in Salem, was diagnosed in 2006 with severe autism, a developmental disability that often manifests itself in repetitive behaviors, lack of eye contact, tantrums, or extreme sensitively to touch.
Experts recommended that Elie undergo applied behavior analysis, an intense personalized therapy that has become a standard of care for children with autism.
The therapy she got at a Johns Hopkins clinic made all the difference. After five months of the treatment, known as ABA, Elie's self-harm dropped by 93 percent.
Her family's health insurer, Providence Health Plan, initially refused to cover the care, which runs as much as $50,000 a year, despite state and federal laws that call for insurers to cover the treatment.
Elie's mother, Christie, said her experience as a financial compliance officer and health insurance billing agent allowed her to fight back; Providence ultimately consented to cover the treatment.
Other parents have not been so lucky. Providence and other health insurers have for years refused to follow the law when it comes to covering ABA treatment for autistic children.
As first reported by wweek.com, a federal judge in Portland last week ruled Providence Health Plan had violated state and federal law by denying coverage to two boys, both age 7.
It shouldn't have taken a federal judge.
Records obtained by WW show the Oregon Insurance Division for years allowed health insurers to avoid compliance, even after the companies had been ordered to pay for the autism treatment more than 20 times by external review boards.
The Insurance Division "works to ensure consumers are treated fairly by their insurance company," says spokeswoman Lisa Morawski, but she declined to comment on the division's policy on ABA treatment. So did the office of Gov. John Kitzhaber, which backed the division's position.
"It's heartbreaking. Why would we want anyone to suffer unnecessarily?" says Christie Riehl. "There is a complete lack of accountability in Oregon."
Video courtesy Eric and Christie Riehl
Applied behavior analysis to treat autism is expensive because it requires an enormous amount of time. A therapist uses positive reinforcement to help a child learn even the simplest behaviors. The treatment is aimed at teaching the child how to learn as well as correct a range of challenges, from self-injury to a gag reflex triggered by the texture of solid food.
"A kiddo may come in, and I can hardly listen to his heart," says Portland pediatrician Leigh Ann Chapman, who prescribes ABA. "He's not looking at me. He can't sit still for 30 seconds. If a kid is like that, nothing is going to be productive."
Treatment can take months—in some cases, years—at 20 to 40 hours a week, and $30 to $50 an hour. Many insurance providers consider ABA "education" training as opposed to medical treatment, even after the U.S. surgeon general in 1999 determined the treatment had proved its worth and become a best practice in the eyes of major medical associations.
In 2005, the Oregon Legislature required insurance companies to cover mental and nervous conditions, including autism, at the same level as they do physical ailments.
Two years later, lawmakers said insurers must pay for treatment for developmental disabilities, including autism, that a physician considers medically necessary. "Insurance companies should have been covering it if ABA is going to make a difference in a child's health," says Sen. Laurie Monnes Anderson (D-Gresham), who sponsored the 2005 law.
That didn't guarantee treatment for Niko Boskovic. He was 3 when diagnosed with autism, and his parents, Bojan and Loreta, in one year burned through their life savings of $10,000 to pay for ABA treatment.
"We had talked about buying some land and starting a winery," Loreta Boskovic says. "It was a young couple's dream."
In 2007, the Boskovics asked Providence, their health insurer, to pay for treatment. Providence refused, saying ABA was experimental and not medically necessary for their son.
The Boskovics appealed to an independent review organization, in effect an arbitrator that, under state law, can order an insurance company to provide coverage.
They won. "ABA therapy is well-regarded, medically necessary, and efficacious," the committee ruled. "Denying ABA therapy for an autistic child is not consistent with national standards of care."
Providence complied, but two years later, in December 2009, the company threatened legal action to get the Boskovics to drop their claims. "If we are unable to resolve this dispute, we have been instructed to file an action in court," wrote Peter D. Shepherd, with the Eugene law firm of Harrang Long Gary Rudnick hired by Providence.
The Boskovics hired a lawyer. "Another $12,000 we didn't have," Loreta Boskovic says. "But they backed off and stopped bugging us."
The Boskovics were the first of more than 20 Oregon families to win orders directing insurance companies to cover ABA treatment for their autistic children, records show. Kaiser Permanente was ordered to cover ABA in 13 cases in which the insurer claimed the treatment wasn't needed.
The state Insurance Division, charged with regulating insurance companies, could have stepped in to make clear what state law required.
Paul Terdal, who has two autistic sons, says the agency promised to do so—but never did.
Terdal's sons received ABA treatment after his insurer, Kaiser, was ordered by independent review organizations to provide it. Kaiser did not respond to requests for comment.
Terdal, a management consultant, didn't know much about politics when his youngest son was diagnosed, but the long-limbed, khakis-wearing middle-aged father of two went to Salem swinging. He had some backing: A federal judge in Portland had ordered PacificSource to cover ABA treatment for a 6-year-old boy.
Terdal worked lawmakers and pushed the Insurance Division.
In a December 2013 email to state Insurance Commissioner Laura Cali, Terdal wrote that the agency had promised to take action against insurance companies if independent review organizations overturned five denials by health insurers.
"We're now at over 20—all have overturned denials of ABA," Terdal wrote. "How many do we need now before the Insurance Division is prepared to act? Fifty? One hundred?"
(Meanwhile, the state of California issued a warning to insurers in 2011 after nine denials of ABA treatment had been overturned on appeal.)
In 2013, an Insurance Division lawyer, Anthony Behrens wrote a legal opinion that echoed the position of insurances companies. State law didn't actually require insurers to cover ABA treatment. Doing so now, Behrens argued, would create a new mandate for insurance companies, which taxpayers would have to reimburse.
Records show Behrens shared a copy of his draft opinion with an executive at Regence BlueCross BlueShield of Oregon. Terdal, meanwhile, had to fight to get a copy of it through a public records request.
Terdal says he appealed to Sean Kolmer, Gov. John Kitzhaber's health care adviser, providing Kolmer with binders filled with cases of overturned denials, medical research, and court rulings supporting the effectiveness of ABA.
"I told him the state's policy violates the law," Terdal recalls.
Neither Behrens nor Kolmer would agree to be interviewed for this story.
Terdal eventually convinced Keith Dubanevich, a former high-ranking lawyer in the Oregon Department of Justice, to tackle the issue. In May 2013, Dubanevich filed a class-action suit against Providence, which had denied coverage of ABA treatment to two families of autistic children.
Providence was now arguing the company didn't cover developmental disabilities—an argument that prevented the families from appealing to an independent review organization.
Two months later, lawmakers passed another law mandating coverage of treatment of autism. Sen. Alan Bates (D-Medford) says the measure was intended to clear up any doubt ABA treatment should be covered.
In February, Providence changed its position and extended coverage of ABA treatment, even though the new law doesn't go into effect until 2016.
On Aug. 8, U.S. District Judge Michael Simon ruled Providence's actions in denying the coverage violated federal and state law. Providence spokesman Gary Walker said the company is reviewing the ruling.
The state's next move is uncertain. "We are looking at this with fresh eyes," Cali, the insurance commissioner, tells WW.
News of the ruling circulated on a list serving parents of autistic kids. Families asked whether their kids would now get access to ABA. Not all will.
The state Public Employees' Benefit Board, 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 agency won't say whether it will change its policy in light of Simon's ruling.
And it's unclear how the ruling affects self-insured companies such as Providence, which has refused to cover ABA treatment for children of their own employees.
Cari Pagan's husband works for Providence. She tells WW that when the couple's 2-year-old daughter was diagnosed with autism three months ago, a Providence doctor recommended ABA therapy—and told them they shouldn't expect to get the treatment covered.
Pagan says the doctor's comments are still fresh in her memory. "I'll write you a letter if you want, I've done it before," he told the Pagans. "But it's never done anyone any good.â