The state of Minnesota is being urged to pay for an intensive -- and controversial -- form of autism therapy for children on Medical Assistance, even though scientists are uncertain of its effectiveness.
The recommendation, from a state advisory panel, would create the first "autism-specific strategy" for thousands of families covered by the state health care program for the poor and disabled.
Under the plan, which would need both legislative and federal approval, the state would pay for a treatment known as early intensive behavior therapy, which advocates say is the best hope for children with autism. In some cases, the treatment can include up to 40 hours a week of one-on-one therapy and cost up to $100,000 a year.
"This is a major victory," said Amy Dawson, founder of the Autism Advocacy & Law Center in Minneapolis. She noted that the advisory group had rejected a recommendation to limit the number of hours or set an age limit for the treatment.
The report, released Tuesday by the state's Health Services Advisory Council, was an attempt to clarify confusion about Minnesota's autism policy, according to Lucinda Jesson, Human Services commissioner.
Officially, the state agency and most private insurers have refused to cover intensive autism therapy because of questions about its cost and effectiveness.
But in 2011, the Star Tribune disclosed that the Department of Human Services was, in fact, paying millions of dollars for the identical therapy for some children -- many from middle class or wealthy families -- while refusing it to low-income children in its managed care programs.
The agency said Tuesday it has been working to address those concerns and ensure that all children in its programs receive equal benefits. The proposed reforms would add $12 million in state funds to cover the additional costs.
Autism, which is marked by difficulties with speech, behavior and social interaction, is now diagnosed in 1 in 88 children, according to federal estimates. About 17,000 people with autism are covered by the state's Medical Assistance program, also known as Medicaid.
Last year, the Legislature asked the health advisory council, made up largely of physicians, to recommend whether the intensive therapy was worth covering.
On Tuesday, the group gave its answer: Yes, under certain conditions.
"Many providers believe that intervening early and intensively in a child's life offers the most potential to reduce symptoms," the council wrote in a 58-page report. "While the literature ... is far from robust, it is still the best studied of ASD (autism spectrum disorder) interventions."
The group concluded that the therapy should be covered, even while scientists continue to study its impact. The panel backed off from a proposal to cap the number of hours at 25 per week or limit the treatment to young children, following objections from many families and treatment centers.
Instead, the group said that the state should determine "the appropriate amount of hours" based on the child's individual needs.
Experts say it is difficult to determine what kinds of autism treatments work best for all patients, in part because the symptoms can vary so dramatically from person to person.
The changes would apply only to the state's Medical Assistance program, not private insurance plans.
In a separate report released Tuesday, researchers from the University of Minnesota said state officials should do more to provide housing and other services to children with severe autism, because access to those services "is uneven" across the state.
Jesson said the agency is "making it a priority" to work with counties and tribes to expand services to autistic children, and will explore "autism-specific housing" as part of a pilot project in several counties.
Maura Lerner • 612-673-7384