Since October, Jaclyn Baucum and her husband have been digging into their savings to pay for their daughter’s autism therapy. The family moved to Bend from California a year ago — shortly after Isabela, now 5, was diagnosed.
Unfortunately for them, insurers in Oregon have consistently denied coverage for the therapy, so the families who get it tend to be those who have the time and money to fight their way through appeals and court battles.
Even for 30-year-old Baucum and her husband, both of whom are college-educated, understanding the technical legalese to fight their insurer, Moda Health, has been tricky. And, like most parents of a special-needs child, their schedules are already stretched thin.
“You make time to do it because it’s a priority, but most people have one, two or three jobs trying to pay for the cost that has accrued from all the therapies that haven’t been covered,” said Baucum, who is moving to Portland this weekend, where she feels there will be more autism services and better insurance coverage through her new job. “But you know they’re still good for your child, so you’re working to afford them.”
Developments in recent weeks have given families like Baucum’s and other autism advocates reason to celebrate. Last week, an Oregon judge ruled that Providence Health Plan was wrong to deny coverage for the therapy, called applied behavior analysis, or ABA.
On Thursday, the Oregon Insurance Division came out with its own statement declaring that insurers can no longer exclude ABA coverage from their policies.
The same day, the commission that decides what’s covered under the state’s Medicaid program, the Oregon Health Plan, voted to cover ABA therapy for its beneficiaries.
ABA is a widely accepted, intensive form of therapy — often up to 25 hours per week — that can cost anywhere between $20,000 and $50,000 per year. Experts say it’s most effective when started early, ideally before age 4.
Jenny Fischer, a board-certified behavior analyst who provides ABA therapy in Bend through her business, Cascade Behavioral Intervention, said they’re exciting victories in what’s been a long, hard fight for families. Fischer provides ABA for families in Central Oregon, although many have had to pay out of pocket.
“This is just one more set of achievements for the advocacy community and the families who’ve been fighting for this for a really long time,” she said.
Another lawsuit is still pending against the state’s Public Employees’ Benefit Board, which also was sued for denying coverage for ABA. Since Providence administers that plan, Paul Terdal, policy chairman for the Oregon chapter of Autism Speaks, said the PEBB is unlikely to win the case.
Officials with the division had been waiting on the Providence ruling to decide how to approach the issue, said division spokeswoman Lisa Morawski. In addition to the statement it released Thursday, the division will write specific rules around ABA coverage, a draft of which will be released in mid-December, she said.
When families are denied coverage, they often take their cases to the division, which works with companies to resolve the issue. If that doesn’t work, it takes families through an independent review process in which a medical expert provides an opinion. Since 2008, 34 ABA denial cases have gone through the division’s review process. Of those, 23 were overturned, Morawski said.
Although the division’s ruling says broadly that insurance policies must cover ABA, it does allow them to deny coverage if they deem it to not be medically necessary in specific cases.
Terdal said there should be clear language around what determines medical necessity so that insurers can’t use the ambiguity to evade the mandate. Each insurer has its own language around what determines medical necessity, so a child could potentially be eligible for ABA under one policy but not under another, he said.
“One insurer could say, ‘Anything your doctor recommends is medically necessary,’” Terdal said. “Another could say, ‘It’s only medically necessary if you have a very high bar of evidence and it’s not too expensive.’ They get to write in their contract what medically necessary means.”
Terdal, also the father of two sons who have autism, began his own battle for coverage against his insurer, Kaiser Permanente, in June 2011 after the company refused to cover ABA. He finally got an order for coverage in December 2011 after going through the division’s independent review process. Last year, Kaiser agreed to pay $9.3 billion to families in California who were denied coverage to settle a class-action lawsuit. Terdal has since helped about 140 families navigate the process of appealing their coverage denials and initiating lawsuits.
In the future, Fischer said she thinks the division — now that it has a clear stance on ABA coverage — will act as a strong advocate for families who previously didn’t have the time, money or legal expertise to plead their cases with insurance companies.
“Most families don’t have the funding or the resources, and also it delays treatment for children if there has to be a legal case,” she said.
Oregon lawmakers last year approved a measure that puts the state among 34 others, plus Washington, D.C., that require private and public insurers to cover ABA therapy. Oregon’s mandate, which takes effect in 2015 for some public plans and 2016 for commercial plans, covers up to 25 hours per week of ABA therapy for kids who begin treatment before age 9.
An unresolved hang-up, however, is whether Oregon law already covered ABA prior to the 2013 law. That’s important, as the cost of any new services a state mandates after an Affordable Care Act provision was implemented must be covered by the state. The ACA’s essential health benefits provision outlined 10 categories of conditions that insurance plans must cover. If states mandate services after Dec. 31, 2011, they must reimburse insurers for covering those services.
Advocates like Terdal have long argued that Oregon’s mental health parity law, passed in 2005, requires insurers to cover ABA just as they would cover treatment for a physical condition. They say a 2007 law that requires coverage for developmental disorders, including autism, does as well.
In his ruling last week, U.S. District Court Judge Michael Simon argued Providence’s ABA coverage denial violated both state and federal mental health parity laws.
The division has not yet finalized an opinion on whether Oregon law covered ABA before the 2013 law, but hopes to have an answer before it publishes its final rules, Morawski said.
The next hurdle for autism advocates will be growing the number of qualified professionals to provide ABA therapy across the state. The 2013 law creates a regulatory board to oversee those professionals. Fischer, a member of the board, said the board will release draft standards for providers in September. Under the law, providers need to be licensed by Jan. 1, 2015 in order to be covered by insurance.
— Reporter: 541-383-0304, firstname.lastname@example.org
Editor’s note: This article has been corrected. The original version mischaracterized Jenny Fischer’s impressions of the Oregon Insurance Division’s future advocacy efforts, and misstated the need for licensing for ABA providers.
The Bulletin regrets the error.