Minnesota considers mandate for intense autism therapy

  • Article by: MAURA LERNER , Star Tribune
  • Updated: April 14, 2013 - 6:05 AM

At the Minnesota Legislature, a proposal on expensive therapy pits desperate parents against skeptical insurers.

Tisha Mette knew the autism therapy for her son, Ayden, would be expensive.

To pay for one month’s treatment, her husband sold his $15,000 Harley. Then they took out a home-equity loan.

Since 2007, her husband has changed jobs three times trying to find an insurance plan that would cover the boy’s treatment.

Now, state lawmakers are considering a proposal to require insurers to cover the intensive form of treatment, which can cost more than $100,000 a year.

It’s a battle that has been playing out across the country as autism diagnoses have soared to record levels. Already, 32 states mandate some form of autism coverage.

This year, Minnesota legislators proposed one of the most generous mandates in the country, with no dollar or age limits on the coverage. But last week, in the face of growing cost concerns, a House committee scaled it back, setting a $50,000 annual limit per child.

Supporters have said they’re more optimistic than ever about an autism mandate, which has support on both sides of the aisle. “People just understand that this is a growing problem that needs to be addressed,” said Rep. Kim Norton, DFL-Rochester, one of the chief sponsors. “We’re all there. It’s just finding the funds.”

The debate has pit desperate parents, who believe their children’s futures depend on the most intensive treatment, against insurers and business groups that say the mandate will drive up health costs and lock in place a hotly contested brand of therapy.

Thanks to a quirk in federal law, the mandate also could cost Minnesota taxpayers millions of dollars at a time when the state budget is facing $150 million in health care cuts.

Initially, the mandate would affect only about a quarter of Minnesotans — those in state-regulated insurance plans. (Most large employers, which are self-insured, are exempt from state mandates.) But under federal health care reform, any new mandate would apply to plans sold on the new health insurance exchange, and state taxpayers would have to subsidize it. Officials estimate that would cost $3.5 million next year, and $10 million by 2016.

But parents like Mette, who lives in Plymouth, say that families can’t afford to shoulder the burden of autism alone. They believe society will save money in the long run by investing in early intervention.

Families swear by treatment

Mette, who has told her story at the Legislature, says her son was a “happy, verbal and loving little boy” until, at 15 months, he inexplicably stopped talking, stopped sleeping and started kicking, hitting and biting. His doctors recommended intensive behavior therapy, which drills children to help them learn basic skills, from talking to making eye contact, and shed autistic behaviors.

Most private insurers, the Mettes found, excluded the therapy.

The family borrowed the money to try it 25 hours a week. “Within the first two weeks we knew, oh my gosh, we have to keep doing this,” Mette said. Her husband, Ryan, a telecommunications manager, switched jobs twice in search of better insurance coverage, only to learn it didn’t cover Ayden’s therapy. He eventually took a job as a truck driver at Schwan’s, which does cover it.

Now Ayden, a bright-eyed boy with brown hair who turns 8 this week, gets 56 hours a week of home therapy. Last week, he hugged a red balloon as his therapist, Kristen Kissner, read him a book called “Bad Kitty.” Moments later, on cue, he hopped to a desk to work on his writing. “Nice job, Mr. Ayden,” she said. The positive reinforcement — a key to this type of therapy — comes in a constant stream. “Awesome job,” she says.

Eventually, his parents hope Ayden will be able to attend regular school. “He’s doing phenomenally,” his mother said. “It’s night and day from where we were.”

But many families who have such insurance coverage are in danger of losing it, and that’s why they’re pushing for a mandate, says Eric Larsson, who runs the Minneapolis-based Lovaas Institute Midwest that provides Ayden’s therapy.

  • related content

  • Ayden Mette receives 56 hours of therapy a week at his Plymouth home. His parents credit the therapists with helping him learn to speak and shed some of his autistic behaviors. But the therapy is expensive, and critics say it’s unproven.

  • Tisha Mette has told her son’s story at the Legislature. The state is debating mandated coverage of the intense autism therapy known as Applied Behavior Analysis (ABA).

  • Ayden Mette, who turns 8 this week, is in an intensive therapy program for autism. Here, he reads with behavior therapist Kristen Kissner.

  • See video

    Watch video

    Watch a video about Ayden Mette and his autism treatment at startribune.com/video.

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