[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Oregon ABA Battle Resumes Before HERC
September 17, 2013
TUALITIN (September 17, 2013) — Supporters and opponents of applied behavior analysis (ABA) presented their cases to a state commission which will advise the Oregon Health Plan whether it should cover the therapy for 400,000 low-income children. The dispute was reported by The Lund Report.
The review by the Oregon Health Evidence Review Commission (HERC) was required under the autism insurance bill (SB.365) signed by Gov. John Kitzhaber in August. HERC in 2008 had advised against ABA coverage, but was directed under the new law to again review the evidence. The new law will phase in coverage for state-regulated health plans and public employees.
As noted by Lund, HERC is being advised by Dr. Alison Little [left] of Oregon Health & Science University, who has testified nationally against ABA. Lund told HERC the evidence supporting ABA was “low quality,” citing a lack of double-blind randomized controlled studies of the therapy.
“Not all children benefit and a great many remain impaired,” she was quoted as saying.
However, Minneapolis psychologist Eric Larsson, who also is advising HERC, said ABA does not lend itself to double-blind studies as the benefits of the therapy are more individualized.
“People are so different when it comes to mental health disorders. The results are very individualized.” Larsson told Lund. “It doesn’t cure everybody, but what does?”
HERC next meets in November.
Autism Treatment for Oregon Health Plan Faces Hurdles, But Approval for Some Kids Likely
Applied behavior analysis has been rejected for coverage by a state evidence-based medicine panel once before, but the Legislature has passed a law requiring private insurance companies to cover the therapy, forcing the state to reconsider its decision.
Christopher David Gray
September 16, 2013 — Autism advocates presented their case for applied behavior analysis last week to an Oregon evidence-based medicine review panel, whose recommendation can make or break the ability of autistic Oregonians to receive the therapy under the Oregon Health Plan.
The approval faces a high hurdle: a staff member for the Center for Evidence-Based Policy at Oregon Health & Science University, Dr. Alison Little, has testified nationally against the psychotherapy for autistic children, including a Florida case in March 2012.
She testified on behalf of Florida’s Medicaid program, which had denied coverage for ABA. But in a sharp ruling, U.S. District Court Judge Joan Lenard in Miami immediately ordered the state to begin coverage for people up to 21, calling the state’s opposition to ABA “unreasonable and arbitrary and capricious.”
Little advises the subcommittee for Oregon’s Health Evidence Review Commission, which will recommend whether the state will cover applied behavior analysis for the nearly 400,000 children on the Oregon Health Plan.
A previous panel rejected applied behavior analysis coverage for the Oregon Health Plan in 2008, but this time, a strong appeal from the Legislature, led by osteopathic physician and Sen. Alan Bates, D-Medford, has forced the panel and its parent body, the Health Evidence Review Commission to reconsider.
The Legislature unanimously passed SB 365 into law, requiring all private health insurance companies to cover ABA for kids up to 9 by 2016, as well as health plans for public employees and teachers by 2015. The law keeps the door open for older children if a specialist approves the therapy.
But for the 44 percent of Oregon children on the Oregon Health Plan, the decision rests with the evidence commission, which will decide whether to recommend the therapy for its prioritized list of health services.
Lack of Controlled Trials
At the hearing in Tualatin on Thursday, Little again labeled the evidence behind ABA as “low quality.” The panel’s preliminary findings offered only a weak recommendation to approve it for children under 13. The opinion opposed treatment for teenagers and adults.
Little based her rationale on the lack of double-blind randomized controlled studies of applied behavior analysis. Many studies were based on just one patient, and there were almost no controlled studies for older kids.
“Not all children benefit and a great many remain impaired,” Little said.
But experts from around the country refuted the lack of evidence, noting that the strongest case came from comprehensive meta-analyses that aggregate and quantify data from hundreds of cases where applied behavior analysis has been tried and recorded. According to such studies, the treatment shows a decrease in destructive behavior in 80 percent of cases.
Gov. John Kitzhaber, a medical doctor who worked at the OHSU policy center before returning to office, signed SB 365 into law in August.
Randomized controlled studies are difficult because autistic behavior manifests itself differently in each individual, and the therapy is tailored to meet the child’s needs, according to Gina Green, a San Diego psychologist and the executive director of the Association of Professional Behavioral Analysts. “If behavior change is unsatisfactory, the practice can be changed,” Green said.
The therapy has also been a standard of care in many states for years, and finding parents willing to subject their children to a 50-50 chance of receiving a placebo for three years would not be practical or ethical.
Without the therapy, children with autism can injure themselves or others, jeopardize their health and impair their functioning. Children may scream, spit, throw objects, or eat non-food items like rocks, dirt and feces, as well as do dangerous things such as inserting objects into electrical outlets. They can face a life of intensive special education and institutional living situations.
But proponents of ABA believe many children can lead mainstream lives if they receive effective treatment, particularly if done before they start school.
Advocates are Optimistic
Eric Larsson, a psychologist from Minneapolis who specializes in ABA, told The Lund Report that he was more optimistic the therapy would get approved this time. Larsson testified as an expert in 2008, and now serves as an advisor to the evidence subcommittee. The committee, which meets again in November, might make a recommendation on ABA at that time. However, any change in policy could not take effect until at least October 2014.
“This time the order for them is to be much more broad,” said Larsson, adding that the evidence panel was more used to approving drug treatments, where the more clear-cut double-blind studies are more practical. Behavioral treatments are by their nature much messier.
“People are so different when it comes to mental health disorders. The results are very individualized.” Larsson said. “It doesn’t cure everybody, but what does?”
Louis Hagopian, a psychologist at Johns Hopkins University in Baltimore, noted that the meta-analyses found applied behavior analysis was most effective when a functional behavioral assessment was conducted before therapy was done.
This would presumably determine whether ABA is appropriate for a child as well as the appropriate areas for focus.
Hagopian said children with autism often suffer from an inability to communicate their needs and wants and act out to receive attention. The bad behavior is reinforced when the children receive attention. Applied behavior analysis works by improving the children’s communication skills, helping them to recognize the needs and body language of other people. The therapy is incredibly intensive, often requiring many hours each week for the patient to show progress.
Larsson, who has testified across the country in support of ABA, said autism advocates often face obstacles from insurance companies that don’t want to pay for the treatment, even if it costs less for society down the road.
But in the case of Oregon, an upfront cost to the state Medicaid plan could save money for schools and the Department of Human Services, if ABA is effective.
“The state does stand to gain in savings on special education costs,” Larsson said.
Christopher David Gray can be reached at email@example.com.
The Autism Community Is Not The Autistic Community
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.