Parents Fight for Autism Insurance Coverage
Coverage for the therapies and treatment associated with autism is limited in most states. But a growing number of states are mandating more complete coverage for this condition.
South Carolina just passed a law requiring greater coverage. Three mothers of autistic children joined together to write the bill and push it through the legislature, over the governor's veto.
One of those parents is Lisa Rollins, whose 5-year-old son is being treated for autism. The treatments, averaging about $5,000 per month, weren't covered by her insurance, Rollins says.
"Once he was diagnosed and the insurance company learned that it was as the result of autism, they actually removed the coverage," she tells John Ydstie.
The insurance companies contended that autism was "strictly an educational issue and that it was not a medical problem," she says.
"Autism is diagnosed by a medical physician, it's not diagnosed by a principal," Rollins says. "It is also an organic brain dysfunction. It is not an educational issue…."
Large employers and insurers resisted the South Carolina proposal to cover autism, saying it would cost too much. Gov. Mark Sanford agreed, and vetoed the measure.
Rollins says the parents who backed the bill argued that autism is similar to a stroke or to Alzheimer's disease, neurological conditions that are covered by insurance.
"We also pointed out to legislators that it was the economically smart thing to do, because these early interventions can make the difference between a child going to a residential care-type of institution, nursing home facility, for the rest of their lives or being able to be a typical kid and be therefore a contributing member of society."
The legislature overrode Sanford's veto in June. The law takes effect July 1, 2008.
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RENEE MONTAGNE, host:
This is MORNING EDITION from NPR News. I'm Renee Montagne.
JOHN YDSTIE, host:
And I'm John Ydstie.
Yesterday, we heard about the explosion in the number of children diagnosed with autism and the pressure on school systems to educate them. Today, we look at insurance coverage for autism. Insurance for the therapies and treatments associated with autism is limited in most states, but a growing number are mandating more complete coverage for this condition.
South Carolina just passed a law requiring greater coverage. Three mothers of autistic children joined together to write the bill and pushed it through the legislature over the governor's veto.
Lisa Rollins from Saluda, South Carolina, is one of those parents. She joins us from Columbia. Welcome to the program.
Ms. LISA ROLLINS (Resident, Saluda, South Carolina): Thank you.
YDSTIE: How was treatment for autism covered? Was it covered in any way in your insurance policy?
Ms. ROLLINS: Absolutely not. There are three types of treatments, typically: behavior analysis, physical therapy, speech or occupational therapy is needed. Those treatments were covered, actually, for my child before he got his diagnosis. And then once he was diagnosed and the insurance company learned that it was as the result of autism, they actually removed the coverage.
YDSTIE: And why isn't autism covered?
Ms. ROLLINS: Well, as best we could see, because the insurance companies were writing it specifically in their policies to exclude coverage. The insurance argument had been that autism was strictly an educational issue and that it was not a medical problem.
YDSTIE: What does it cost for parents to get treatment for an autistic child?
Ms. ROLLINS: Our treatments averaged about $5,000 per month out-of-pocket, because there was no coverage, and the treatments are typically supposed to take place over the course - if you have a pre-school child - at least two to three years, 35 to 40 hours per week. So it's absolutely devastating. It's anywhere between $60,000 to $80,000 per year.
YDSTIE: What specifically is the treatment, this behavioral intervention?
Ms. ROLLINS: It is called ABA - Applied Behavior Analysis. And it involves behavior modifications for children with autism. You try and encourage behaviors that you want the child to exhibit and discourage behaviors that you want a child to reduce.
YDSTIE: Let me ask you this. Why shouldn't the educational system pay for that instead of an insurance company?
Ms. ROLLINS: Because autism is diagnosed by a medical physician. It's not diagnosed by a principal, and it is also an organic brain dysfunction. It is not an educational issue from that standpoint.
YDSTIE: Large employers and insurers resisted your proposal, saying it would cost too much. And the governor vetoed it because he says it would cost too much. What was your response to their argument?
Ms. ROLLINS: Well, we had several responses. The first was autism is very similar to a stroke or to Alzheimer's. Those are neurological conditions, and there's coverage for those catastrophic events when they happen. We also pointed out to legislators that it was the economically smart thing to do because these early interventions can make the difference between a child going to a residential care-type of institution, nursing home facility for the rest of their lives or being able to be a typical kid and be, therefore, a contributing member to society.
YDSTIE: You and your colleagues who wrote this bill each has an autistic child, but one of the ironies is that despite your efforts over the past two years, your own children aren't going to be covered by this law.
Ms. ROLLINS: That's correct. The state legislature mandates coverage for those insurance companies that are regulated by the state. That, as well as the state health plan, makes up about a quarter of our population. Other insurers will not be required to offer coverage, but we have seen that many of them do voluntarily offer coverage once a mandate goes into effect.
YDSTIE: Lisa Rollins is one of the South Carolina parents who pushed a law for more complete insurance coverage for autistic children through legislature this summer. Thanks very much for joining us.
Ms. ROLLINS: Thank you.
YDSTIE: There's more about autism insurance laws at npr.org. Transcript provided by NPR, Copyright National Public Radio.
