Minnesota Department of Human Services proposes changes in autism services

Sheri Radoux has lost faith in the public school district to provide effective services for her three children, each of whom is diagnosed with autism spectrum disorders. After trying early childhood and family education services for her oldest son, she said that he became worse. “We will probably never use public schools,” she said. Instead, she plans to continue to send her children to a private school. When the Department of Human Services (DHS) released the proposal draft for Reform 2020: Pathways to Independence, Radoux was among parents who became concerned about potential changes in autism spectrum disorder services through Medical Assistance.

The controversy in brief: DHS says the proposed changes will move toward a "Pathway to Independence" for children with autism spectrum disorder. Some parents, and some medical professionals, fear that the changes will shift costs from state medical assistance programs to already-inadequately-funded public school programs, and will result in less availability of services for school-age children.

Since children with autism spectrum disorders (ASDs) currently receive services from several programs, DHS proposes creating coordinated services that it says would benefit a greater population of children with ASDs than the current waiver system serves. Minnesota offers a number of home and community based waivers that allow people to gain access to services not regularly covered through Medical Assistance that will help them stay out of institutions.

Waivers go to people with the more significant disabilities and there currently are waiting lists for waivers, officials explain. Other goals of the Reform 2020 plan include providing evidence-based treatment and making treatment providers accountable for showing that a child is making progress from the treatment.

As part of the plan to create a specific program that covers autism spectrum disorders, wording in the proposal points to providing early intervention services for children with ASDs from birth to age seven. The proposal appears to state that after children turn seven, they are likely enrolled in a school and would receive services from the school through their individualized education program. Amy Dawson, lawyer and executive director of the Autism Advocacy and Law Center, said, “I think many parents feel that the schools are ill-equipped to meet every need of a child who has autism. Kids who have autism need lots of different services. Limiting them to their school district is very troubling.”

Autism Interventions

One of the services parents choose for their children is Applied Behavioral Analysis (ABA), also called Intensive Early Intervention Behavioral Therapy. The therapy uses specific techniques to treat autism and can require as much as 40 hours a week of therapy. According to a Star Tribune report, the therapy can cost up to $100,000 a year, and critics say that there is not enough evidence to support the therapy’s effectiveness. Few insurance companies cover the therapy, and at the end of 2011, Blue Cross Blue Shield announced that it will end coverage over the course of this year.

Said Eric Larsson, clinical director of the Lovaas Institute in Minnesota, “Historically what we’re doing has been considered controversial and especially the cost of treatment has been controversial.” The controversy surrounding the treatment has resulted in some advocates and parents who are very vocal about their support of ABA therapy. Larsson has written that such therapy is a well-researched, evidence-based form of treatment for autism. From 2003-2012, he reported that 52.5 percent of children treated reached best outcomes. The term “best outcomes,” Larsson said, means that the child no longer fits the diagnostic criteria for autism, has an IQ of at least 85, and no longer needs special education support at school. Radoux expects that at least two of her children will reach best outcomes due to the ABA therapy they receive.

Kim Kang with the Autism Society of Minnesota explained that it is important that DHS cover a variety of high quality, evidence-based interventions for autism—not just ABA therapy. Kang said that at the Autism Society of Minnesota, “We have kids across the spectrum. Those kids are so different from each other and different things work. ABA is not going to work for every kid… We need to have a full tool box here.” They advocate for developmental interventions, Kang said.

Floortime therapy is another example of developmental intervention. It involves therapists and parents getting on the floor to interact with children in games. Autism Speaks describes the therapy as addressing emotional and intellectual development.

Parents, Schools, and Applied Behavior Analysis

Sheri Radoux’s children receive ABA therapy, and she encountered obstacles when she tried to continue ABA therapy at her son’s school. “The school system wouldn’t let the therapist come into the schools,” Radoux said. Her son needs his therapist’s assistance at school, she said. She was further disappointed when she learned that her son would not receive support from a paraprofessional, and that he would not have direct hours with a speech pathologist or occupational therapist. That’s when she turned to private schooling for her children.

Heather Hanson, a parent of four children, has three children with autism. Hanson said the professionals who worked with her children at school did not even tell her about ABA therapy. She didn’t learn about it until her youngest had turned seven and the oldest was nine. “They were teaching the kids, but not medically treating the kids,” Hanson said. She has chosen to home school her children because the public school does not offer ABA therapy.

It’s been three years since Hanson’s children have started ABA therapy, and she is very satisfied with the results so far. “They’re progressing nicely,” she said. Her oldest child, now twelve years old, has done so well that they now receive only parent consulting services for him. Since Hanson’s children were seven years old or older when they started ABA therapy, she has particular concerns about losing ABA coverage. “I don’t want to be forced to use school services. We want the medical services because we think that’s best for our children.”

Said Dawson, “Kids with autism can get better. They can achieve independence. My kid went from an IQ of 50 to over 100 and was told that he would never talk and would be high needs. By the time he graduates from second grade, he will be independent. Every kid deserves a chance at that.”

DHS Response to Concerns

DHS held a public meeting about autism services and Reform 2020 on July 11. DHS staff emphasized that the intent of the proposed changes to autism services is not to reduce services. They want to insure that children with autism receive services as early as possible, which explains the statements in the proposal about early intervention services. At the age of seven, many children are in school and that affects services, staff explained. Said DHS staff Reggie Wagner, “We don’t intend to view this is a cap … age 7 is a significant transition for the child.” She called the mention of the 0 to 7 age group in the proposal a way of highlighting that transition. When pressed by an audience member to more fully explain, she responded that she could not answer the question at that time.

Wagner explained that the purpose of the changes in autism services in Reform 2020 is to create a better program. “Cost isn’t driving this,” she said. DHS staff Alex Bartolic added, “We’re trying to serve people across the lifespan.”

Kang also attended the meeting. Although she remains uncertain what DHS means by focusing on the 0 to 7 age group in the proposal, she said she is glad that DHS has undertaken reform. “We have something good going on here,” she said. She added, “We just need to flesh out the details.” Kang expects the Autism Society of Minnesota to remain involved in the process of reforming autism services under Medical Assistance.

DHS plans to have a proposal ready for the next Minnesota legislative session in January 2013. In addition to public comments, they will hold stakeholder meetings that will include parents as staff continue to work on the proposal. Said Wagner, “We want to engage stakeholders in the process of what the program will look like.” Hanson, the parent of three children with autism, said that she is excited for the opportunity to participate in the process.

Eric Larsson said he believes that DHS genuinely wants to develop a good program. “They seem sincere about wanting to do the right thing, but nothing has been put into writing about what it all means.”

Amy Dawson described what she would like to see in writing: “That there will not be an age cap, reduction in services, or any other types of caps. The only cap that makes sense is individual medical necessity.” She said that whether a child needs 20 hours a week or 40 hours a week of therapy, both should be covered if the physician prescribes it. “My belief,” Dawson said, “is that federal Medicaid law requires coverage of medically necessary care.”

Said Sheri Radoux, “My main concern is that they’re [DHS] not going to continue services long enough so kids can reach their greatest potential.”