Steve Taylor: Autism insurance law is for 3-year-olds

‘Normal is a range” is a speech I’ve been giving too many parents of children with autism lately. On the third anniversary of California’s “autism insurance mandate,” I’ve been seeing fewer 3-year-olds who really benefit from the intensive, expensive therapy and more older kids who are just a tad odd, if you’ll forgive the clinical reference.

My normal spiel goes like this: Yes, Mom, Juanito says weird things and flaps his hands sometimes, but he’s able to communicate his needs and blends into fourth grade OK. We all want our kids to be hip and popular, but plenty of folks seem happy on the edge of the group, doing their own thing. Normal is a range, and I can’t fix normal.

But parents still want us to try, and unless we all slow down one day our premiums will go crazy.

In July of 2012, SB 946 required health insurance policies in California to provide coverage for Applied Behavioral Analysis and other evidence-based treatments for children on the autism spectrum or with pervasive developmental disorders. This sounded great to those of us who offer this kind of therapy, and the California Department of Insurance estimated the state would save up to $200 million annually in public special education programs and Regional Center costs with the improved developmental progress of children.

ABA training used to be paid through the state’s Regional Center system, where kids suspected of having a developmental disability (such as mental retardation) receive free diagnosis and treatment regardless of their ability to pay.

But ABA treatment for a preschooler with autism who isn’t talking and avoiding eye contact can look horribly like dog training. A therapist might give him bits of food, first for looking at the therapist’s face, then for imitating actions like clapping and then later for mimicking lip movements and sounds. This training goes on sometimes 25 hours a week in the child’s home at a minimum of $40 per hour for two to three years. It’s also really effective, with plenty of studies confirming that it is a “medical necessity” for patients under the age of 5.

But the older and more verbal a kid gets, the more therapy looks like enthusiastic babysitting and evidence for using the intensive techniques goes down. If your 12-year-old gets himself dressed and can argue about cleaning his bedroom but screams when you turn off his iPad, there’s not much a pro can do about it – though now you can ask your insurance company to pay someone to try.

So it compels insurance companies to stick to the science and ask questions about the necessity of treating “occasional tantrums.” Still, getting real positions on the ever-expanding autism diagnoses, and the costs of treating it, isn’t easy.

Kaiser Permanente said it was “in full compliance with SB 946, and … continue to work with local and state officials in finding the best, most qualified providers to serve our members.”

Kaiser’s hesitation to join my dubiety is understandable since it took a $9 million beatdown to settle a class-action suit that alleged they illegally refused to provide behavioral therapy for autistic children before it was even mandated in 2009.

Few insurance companies administer their own mental health services, which removes the direct financial brakes. The Health Plan of San Joaquin, a main player in the Medi-Cal and Affordable Care Act in Stanislaus County, farms out their ABA to Beacon Health Options, headquartered in Boston.

Says Beacon Health Options: “We expect Medicaid health plans serving Northern California will have several thousand patients in addition to the new cases we currently handle once the transition from the Regional Centers is completed.”

Beacon seems dedicated to only providing services based on medical need and even publishes results on its website, but still makes its money by arranging services.

So here’s my spiel asking for abnormal behavior from all involved: We therapy providers admit we can only prove our therapy is helpful for a narrow band of symptoms and only across a few years; insurance companies, meanwhile, must see real improvement in the patient within months, or they stop funding treatment. So parents, push that baby while he’s young and love him for what he is after you chuck the booster seat.

This story was originally published July 26, 2015 at 8:58 AM with the headline "Steve Taylor: Autism insurance law is for 3-year-olds."