Autism Diagnoses Bring Slew of Costs for Families | PBS NewsHour | April 13, 2011 | PBS

Autism Diagnoses Bring Slew of Costs for Families | PBS NewsHour | April 13, 2011 | PBS

Autism and Insurance: a Push for Coverage

For those parents, unlike Henderson, whose children need more therapy and treatment than the school or state provides, insurance is the next step -- but it too is often little help. Many insurance plans exclude autism treatment or refuse to cover behavioral therapy because they say it is an educational, rather than a medical, treatment.

Recently, however, the insurance situation has been changing. In the past three years, the advocacy group Autism Speaks has coordinated a push to get states to pass laws mandating that insurance companies cover autism treatment.

"Our community had gone for far too long at the mercy of insurance companies who used autism as the basis of denial for meaningful, necessary, evidence-based interventions," says Peter Bell, executive vice president for programs and services at Autism Speaks.

The organization's push is working: In 2006, only Indiana had such a law in place. Today, 25 states do.

"Children are receiving treatments, making tremendous progress and are often able to transition into a school environment with less support," Bell says. "This is an investment in the future."

In Massachusetts, Debe Needham Chamberlain has seen that change firsthand. She and her husband, both special education teachers, paid out-of-pocket for their son T.J.'s $150-per-session occupational therapy for three years and worked extra jobs to make the money. The bill mandating autism coverage was signed into law in last summer, and just recently, for the first time, T.J. was able to see the occupational therapist with only a co-pay.

"This is such a godsend," Needham Chamberlain says. T.J. was lucky to be able to attend school in the district where his mother teaches, which offers ABA therapy in school, but the district they live in does not. "People mortgage their houses so that their children could get services," she says. Now, with the new law, they are moving T.J. back to his home school district, and insurance will cover out-of-school ABA therapy.

Others, particularly insurers, believe that the laws are a mistake. Susan Pisano, vice president of communications for the insurers group America's Health Insurance Plans, says that AHIP generally believes that legislative mandates are a bad way to structure benefit plans -- not just for autism but for all conditions.

"The cumulative impact of thousands of mandates across the country has been to raise the cost of coverage -- in some cases beyond what small employers can afford," she says.

And, she says, many of the therapies mandated in some of the new state laws are educational rather than medical -- and so should be provided by school districts.

But Bell, of Autism Speaks, disagrees.

"Autism is a diagnosis you receive from a medical professional," he says. "School and teachers do not give an autism diagnosis."

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