Follow the link to the full HSAC report released on 2-12-13:
Minnesota urged to cover unproven autism care
  • Article by: MAURA LERNER , Star Tribune
  • Updated: February 12, 2013 - 11:14 PM

Aid program would pay millions for behavior therapy still being studied.

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

Link to the Star Tribune Article:

This recent article from the Pioneer Press gives you a sense of what could be happening and how important it is to contact your own legislator.

"Blues rein in autism care coverage. Insurer plans to begin dropping costly intensive therapy; advocates fear state program at risk, too"By Christopher Snowbeck, Pioneer Press, St. Paul, Minn.McClatchy-Tribune Information ServicesDec. 20--Blue Cross and Blue Shield of Minnesota will begin dropping coverage in most cases for a costlytherapy for autistic children as early as Jan. 1 -- a change that has patient advocates worried about losingcoverage through a key state program, too.The Eagan-based health insurer said Monday that the coverage change will be phased in over next year andaffect about 200 children who have been receiving a treatment known as early intensive behavioralintervention. The treatment cost averages about $80,000 per year.Autism is one of four developmental disabilities grouped under the heading of Autism Spectrum Disorders,which can cause significant social, communication and behavioral changes. The federal government estimatesthat an average of one in 110 children in the United States have one of the disorders.Blue Cross is changing its coverage policy to match that of other health plans as well as the stateDepartment of Human Services, said Pam Lux, a spokeswoman for the insurer.That's bad news, patient advocates said, because Blue Cross has been one of the few health plans to providecoverage of the intensive therapy, which in some cases involves 40 hours per week of treatment.But the insurer's reference to the Department of Human Services also is concerning, advocates said, becausethe state has been a key source of coverage for families that don't have Blue Cross coverage."We're concerned that this is a harbinger of something on the horizon -- that the state is going to say: 'This is not a covered service,' " said Amy Esler, a psychologist at the autism spectrum disorders clinic at the University of Minnesota.But Patrice Vick, a spokeswoman with the Department of Human Services, said Monday: "We're not makingany changes in our coverage of autism services."The state does not offer blanket coverage for the therapy, advocates said, but patients get access to theservices as part of what the state calls "skills training."The state's public health insurance programs provide access to the intensive behavioral therapy for about 300to 500 children, estimated Amy Dawson, an attorney with the Autism Advocacy and Law Center inMinneapolis.

The purpose of this event is to learn how anyone can contribute to the needed advocacy efforts during this legislative session. From 9:00-10:30am there will be presenters detailing what the issues are, how to identify your legislators, what to talk with them about and how we can work together to secure the necessary funding for services related to children with autism. From 10:30-12:00 we will assist you in meeting with your legislators. Detailed below are two links to use to identify who your legislators are based on your home address. If possible, please contact your legislators in advance to schedule a meeting with them on 02/28/12 directly following our event.

Your action is needed to secure continued coverage for Early Intensive Behavior Intervention (EIBI). Throughout the 2012 Legislative Session we need to rally and advocate together to prevent cuts in coverage and to secure coverage for the treatment that children with autism deserve. This event is open to all concerned individuals including parents, friends, providers, staff and physicians. We have invited a number of legislators to attend as well.

Minnesota Judicial Center
25 Rev. Dr. Martin Luther king Jr. Blvd.
St. Paul, MN 55155

For directions and parking information from the Minnesota Judicial Center's website:

Most of the public ramps have metered parking available so bringing quarters is recommended.

Please rsvp your attendance to Sheri Radoux at or to Kristy Oldham at

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