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Autism advocates push bills

Proposals similar to those put forth in prior sessions


Life certainly hasn’t been easy for Estacada residents Brian and Heidi Lowry since they found out that their daughter, Myiah, was diagnosed with Rett Syndrome, a severe form of autism.

Bills are being proposed for the 2013 legislative session that are aimed at helping families like the Lowrys.

And while the family might not obtain any immediate relief, the hope is that the kind of insurance coverage they need will become more standardized.

Up until recently, Myiah, 4, was undergoing applied behavior analysis therapy. Obtaining insurance coverage of ABA is a top priority for the Autism Society of Oregon, according to executive director Tobi Rates.

“It’s absolutely imperative that children who need ABA get it as soon as possible,” Rates said. “The evidence is out there and the data shows that as soon as you can get the service to the children who need it, the better the outcomes are.”

That has certainly been the case with Myiah. Heidi Lowry said that even though Myiah was getting ABA and making progress, her insurance has stopped paying for it. Myiah is now losing abilities on a weekly basis as a result.

“Right now, we’re at a complete standstill. We’re no longer receiving ABA, because our insurance denies it completely,” Lowry said. “Now is the worst time in the world for her to be losing ABA therapy services.”

The Autism Society and its contract lobbyist Shane Jackson have been participating in legislative workgroups for the past several months to address the issue of insurance coverage for ABA therapy.

Those sessions, which included input from insurance industry lobbyists, have produced a pair of bills that will be introduced when the Oregon Legislature convenes on Feb. 4.

One of them, Senate Bill 365, has already been endorsed by Autism Speaks, a national nonprofit advocacy organization.

SB 365 is similar to bills that were submitted in 2011 and 2012, and makes a new comprehensive requirement for coverage of any medically necessary treatment for autism spectrum disorder. It also provides for the licensure of ABA providers by the Oregon Health Licensing Agency.

When a similar bill came up during last February’s month-long legislative session, a hearing was held on it. But the bill ultimately stalled in the Senate Health Care Committee.

Insurance industry lobbyists testified during that hearing that they wanted to see changes to the bill, including the addition of “sideboards” to coverage costs and a process for the credentialing of ABA therapists.

“What we’re trying to do is merge the bills and incorporate all the changes that the insurance companies suggested,” Jackson said. “They’re pretty good safeguards that they suggested. As far as we can tell, we’ve incorporated just about everything they suggested right down the line.”

The credentialing issue is specifically addressed in a separate bill, SB 381.

“Basically, it’s a registration process,” Jackson said. “People who provide ABA services can register with the state.”

Rates said that credentialing will ultimately benefit everyone involved.

“We want to make sure that the people who are working with the children have, on the front end, a review process and a criminal background check and on the back end, a disciplinary process in place, if necessary,” she said.

While SB 365 would extend ABA coverage to children on the Oregon Healthy Kids Plan and other state-run programs, it would not cover self-insured plans.

Lowry said that her family’s predicament is unique because her employer is self-insured and can pick and choose which services to cover.

“From what I see of the legislation, it will help a lot of people, but it won’t necessarily help us in the situation we’re in,” Lowry said.

Rates, who also is the mother of two autistic children, acknowledges that the proposed legislation is aimed toward commercial health insurers.

The state doesn’t have the authority to require self-insured employers to mandate coverage, she said. Some self-insured entities like Intel and the city of Portland voluntarily provide ABA therapy coverage.

But Rates said that once such coverage becomes more standardized, it is more likely that self-insured entities will follow that lead and adopt similar policies.

Advocates fully expect the bills to be amended through the legislative process. However, Rates said she is “very hopeful” that there will be a positive outcome by the time the session adjourns.

“We will be in Salem in all of the hearings talking to all the legislators and trying to answer the questions that they have and explain the reasons that different decisions have been made and different compromises,” Rates said. “In a consensus bill, no one gets everything they want. But we are very hopeful that we will have the chance to provide a better route to access for ABA services for families in Oregon, particularly for very young children.”



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