Minnesota considers mandate for intense autism therapy

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.

Last year, the only large health plan in the state that covered it, Blue Cross and Blue Shield of Minnesota, announced it was stopping. Dozens of other families, who get coverage through the state's high-risk insurance pool, learned it will disappear under federal health reform. "Everybody's feeling like their coverage is at risk," said Larsson.

Larsson, whose institute has spent $387,000 on lobbying since 2008, says the insurance mandate is critical for those families. He points to studies describing this type of therapy, also known as Applied Behavior Analysis (ABA), as far and away the most effective.

Insurance industry is wary

The insurance industry, though, is skeptical. Glenn Andis, a psychologist at Medica, said that health plans cover many types of autism treatment, such as speech and physical therapy, but often draw the line at ABA. It's far more expensive than other types of treatment, he said, without proof that it's more effective.

Andis notes that an expert panel examined the scientific literature for the state of Minnesota, and concluded in February that the evidence was "far from robust." Yet the panel, called the Health Services Advisory Council, recommended that the state pay for an unlimited amount after supporters flooded the group with personal appeals. Andis called it a "political decision" rather than a scientific one. "Why should we pay 10 to 20 times more for something that shows no greater evidence?" he asks.

Andis said he's also troubled that parents have been led to believe that 40-hour-a-week treatment is their only hope. "Yes, they're going to get some behavior change, there's no doubt about it," Andis said. But "at what cost?... Is that the most effective and most efficient way?"

One autism advocate, in fact, has publicly criticized the proposed law. Idil Abdull of Burnsville, founder of the Somali American Autism Foundation, says that advocates sometimes exaggerate the need for intensive therapy, and a mandate like this would be a blank check.

"This bill asks unlimited hours for ABA, for unlimited age, forever," she testified in March. Abdull, who has complained about disparities in treatment for low-income children, said it would be fairer to put some limits on autism services, and make them equally available to rich and poor.

Supporters, though, say the fears about costs are overblown. Sen. Chris Eaton, DFL-Brooklyn Center, one of the chief sponsors, estimates that about a third of young children with autism might need intensive treatment, typically for about three years.

Michael Wasmer, of the national group Autism Speaks, says that autism mandates in other states have not been as expensive as some feared. On average, they cost health plans 31 cents per member per month. He acknowledges that most states have dollar caps — typically $36,000 to $50,000 a year — and age limits (from 6 to 21). But he cited a recent Missouri study that found a negligible impact on insurance premiums.

In any case, advocates argue that the cost pales compared to a lifetime of special education and support services.

"It would be really penny-wise and pound-foolish," said Eaton. "These people will cost millions of dollars over their lifetime if we don't give them treatment now."

Maura Lerner • 612-673-7384