By Johanna Kennelly Ullman
There have been huge developments recently in autism health insurance reform in Oregon and Washington. What does that mean for you and your family?
“For the future, this means the fighting should be over,” says Paul Terdal. And Terdal should know—he is a local attorney, the Oregon chapter policy chair for Autism Speaks, a parent of two children with autism and an advocate for autism health insurance reform since early 2009. He was also honored at the Autism Speaks’ Law Summit Nov. 17 for his ongoing advocacy work.
Autism Speaks and the Autism Society of Oregon, along with numerous other local organizations, parents and advocates, have been working tirelessly to require health insurance coverage in Oregon for medically necessary autism therapies. At the center of the push for coverage is Applied Behavior Analysis (ABA).
ABA is described as “behavior analysis that focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated,” according to the Autism Speaks website.
ABA uses techniques to create positive changes in behavior and has been shown to significantly improve communication in individuals with autism by enhancing their ability to perform social, motor, verbal, behavior and reasoning functions.
Tobi Rates, executive director of the Autism Society of Oregon, congratulated Terdal’s work.
“We are so lucky to have Paul,” Rates says. “There has been a lot of good work done by a lot of people, and a lot of progress, but there is more to be done. These are services that children desperately need and they should have been offered to our kids.”
Rates’ family has paid out-of-pocket for ABA therapy for her 10-year-old son, who has “seen a lot of progress.”
ABA is not a new concept and it is rooted in scientific data. B.F. Skinner revised the traditional theory of Behaviorism in the 1930s and developed the modern form of it known as Behavior Analysis. ABA started being used as an autism therapy in the late 1980s and has gained popularity in the last decade.
The Behavior Analysis Certification Board (BACB) describes ABA as a “well-developed discipline among the helping professions, with a mature body of scientific knowledge, established standards for evidence-based practice, distinct methods of service, recognized experience and educational requirements for practice and identified sources of requisite education in universities.”
And while ABA therapy may not be appropriate for everyone, Rates adds that it is important for families to have access to it. She also explained that implementation of the new legislation is expected to be slow, noting that there are only about 30 nationally licensed ABA providers in the state of Oregon. Coupled with the 9,000 children with autism enrolled in Oregon schools alone, there will be a supply and demand issue.
Recent legislation focused specifically on ABA therapies, however the verbiage used in the senate bills is flexible enough to cover other evidence-based autism therapies.
Despite its evidence-based history, many families wonder why insurance companies deny coverage of ABA. One school of thought is the cost of therapy; ABA is expensive due to its one-on-one intensive treatment between a therapist and a patient. The current estimation of cost for 20 hours a week of therapy can reach $50,000 a year. However, those figures aren’t firm since each patient’s care is individualized and can vary greatly.
Denial of ABA therapy has forced many families to pay out-of-pocket for sessions, or forego treatment all together. The case that sparked the plight of insurance reform was the class action lawsuit “AF and AP vs. Providence Health Plan.” In the case, two families raising children on the spectrum challenged their denial of ABA coverage.
U.S. District Court Judge Michael Simon ruled that Providence’s denial of the coverage violated both federal and state mental health parity laws. State and federal laws require mental health conditions receive equal coverage to treatment for medical care.
Oregon actually has two laws that should require insurers to cover ABA therapy: the Mental Health Parity Act and the Developmental Disabilities Act. Judge Simon explained, “The court finds that Providence cannot simultaneously purport to cover autism, and yet deny coverage for medically necessary ABA therapy through its Developmental Disability Exclusion consistent with the Oregon Mental Health Parity Act.” While Providence was not the only insurer denying coverage, this ruling has helped legitimize that all ABA should be covered by all insurance companies in Oregon.
“ABA was first considered investigational and denied,” says Julie Hillyard, a Vancouver mother with a child on the spectrum. Together with her husband, Dr. Todd Hillyard, have been paying out-of-pocket for ABA therapy for their 6-year-old son for three years. Since 2012, an independent review committee for Regence Health has denied the Hillyards four times for ABA reimbursement in Washington.
“One of the things I didn’t understand was how much Matthew would need tasks broken down for him,” Julie says. “This therapy, it was the one thing we could do for him. The people working with our family have been so kind and have made an investment in our son.”
She says that ABA is so unique for children with autism because it is customized to meet the needs of each child. The family is working to reform the insurance laws in Washington state that would require ABA therapy coverage, similar to Oregon. The family is encouraged by the recent settlement of two class action lawsuits totaling $6 million against Regence BlueCross/Blueshield.
Even in Oregon, with the excitement of the new legislation, there are still many questions. The Division of the Oregon Department of Consumer and Business Services is now involved. Last month, the Oregon Insurance Division issued two bulletins clarifying insurance companies’ responsibility for ABA coverage for people with autism.
The Insurance Board made drafts of the bulletins available to several autism and mental health advocacy organizations, as well as members of the general public. Groups were able to review, provide feedback and clarify language about limitations on age and time of ABA therapy for patients. The final bulletins direct all Oregon insurers to comply with state and federal mental health parity laws.
Despite this new legislation, those that self-pay for insurance plans will not be covered for ABA therapy reimbursement.
Portland father Jim Williams falls into this grey area.
Williams’ son, a freshman in high school and on the spectrum, was evaluated and assessed last year and prescribed an augmentative speech display. At the time, the insurance company said the device would be covered along with unlimited therapy.
The family was ecstatic.
Then, before they started therapy, their insurance claim was rejected, citing no coverage due to no coverage for developmental delays. Williams struggled to understand.
“We fight so many battles on so many fronts,” Williams says. “I wish we didn’t have to go through the emotional roller coaster.”
How to obtain ABA coverage
- Contact your insurance company and ask for coverage, reimbursement, or both. “Nobody will get anything they don’t ask for,” says Terdal.
- ABA therapies can start immediately, or families can be put on a wait list for services.
How to proceed if you are seeking ABA coverage from insurance
(Adapted in part from Autism Insurance for Oregon’s website, autisminsuranceor.org)
Magazine article on educational vs. medical diagnosis of autism)
Oregon to order sweeping ABA coverage (Autism Speaks)
State insurance mandates for Autism Spectrum Disorders (American Speech-Language Hearing Association)