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Autism treatment: Health insurance coverage often excludes applied behavior analysis therapy
Autism does not discriminate based on income; it affects children from wealthy and poor families alike. Paying for autism treatment, and especially for applied behavior analysis treatment, is a challenge. A maze of different policies and regulations makes already-difficult choices even harder for Minnesota parents. “There might be ten families that have an insurance provider and within each of those insurance providers there might be all kinds of contracts with the employer of what’s included and what’s excluded,” said Pat Pulice, director of autism services at Fraser, a Minnesota organization that serves children and adults with a wide spectrum of physical and mental disabilities, including autism.
Insurance coverage for programs that only provide applied behavior analysis is particularly difficult for families. Applied behavior analysis (ABA), is a controversial therapy for autism that can require as much as 40 hours a week of therapy. Amy Dawson, lawyer and executive director of the Autism Advocacy and Law Center, called ABA an effective, evidenced-based therapy that can help children become more independent, and can save taxpayer money. Autism can cost the state an estimated $3.2 million over an individual’s lifetime, according to a study published in 2006 by a researcher at the Harvard School of Public Health.
Critics say ABA is a costly and unproven treatment. In Minnesota the therapy can cost up to $100,000 a year, reported the Star Tribune. Few Minnesota-regulated private insurance plans cover the therapy, according to the Tribune. Just last year, Blue Cross Blue Shield announced that it would end coverage of ABA over the course of 2012. In an emailed statement, DHS said that they do not specifically include ABA in Medical Assistance coverage; however, DHS will pay claims from clinics that offer ABA when the therapy is designated as skills training.
Over half the states in the nation have enacted laws that require health insurance to cover autism diagnosis and prescribed medically necessary autism treatment. Minnesota is not one of those states and does not currently have an autism-specific law. Neither does Medical Assistance cover a specific set of autism services, according to the Department of Human Services (DHS). A Minnesota statute does require state regulated insurance plans to cover mental health services using the same limitations as medical services; yet wide variations exist in health insurance coverage for autism treatments or interventions.
The problem, ABA advocates say, is that only those with a certain type of Medical Assistance have the option to receive ABA training for their children under the skills training designation. These families are those whose child receives Medical Assistance coverage under the TEFRA option.
If a family’s household income disqualifies a child from Medical Assistance, other factors such as disability, home care cost, and child income, can qualify that child for coverage. In that case, parents pay a monthly fee that is based on their income. This is called the TEFRA program, or fee-for-service Medical Assistance.
Families that meet the income requirements for Medical Assistance are generally enrolled in a managed care program. Although these families have the option to receive coverage through the TEFRA program, they do not always know that they can do so.
Idil Abdull, co-founder of the Somali American Autism Foundation explained that families cannot ask for a program if they do not even know it exists. “They don’t tell you that you have the option to do fee for service. That’s why the mainly well-to-do families get it,” Abdull said. “If you’re minority or low income, you don’t know. No one tells you.” Abdull added that sometimes asking questions can be difficult for families who feel that they should just take what the state first offers to them.
Amy Hewitt, at the University of Minnesota, agreed that some families simply do not have all the information they need to make a decision that will best address the needs of their child’s disability. Said Hewitt, “If parents who have children with autism don’t understand the disability or the effective treatments, or have someone helping them navigate the system, then it’s difficult to be sure that… the services that they need will have the highest chance of being funded.” Hewitt specializes in developmental disabilities and is a senior research associate and director at the Research and Training Center on Community Living at the University of Minnesota
States that have autism-specific laws often include behavior therapy as a treatment that certain types of health insurance plans must cover. Such laws often place age and cost limits for behavior therapy coverage. For example, the law in Wisconsin mandates coverage of up to $30,000 a year for 30 to 35 hours a week of intensive-level services. The plan must cover the treatment for a minimum of four years. In Illinois the law mandates coverage for up to $36,000 a year for individuals under age 21.
Dr. James Moore, a developmental pediatrics doctor at Children’s Hospitals, said that ABA is indeed the right therapy for some children. Autism is a spectrum disorder. As such, Dr. Moore explained, autism consists of a range of symptoms. “The sticking point,” Dr. Moore said, “is the assertion of some that this [ABA] is the only way to do it, and I think that’s untrue. We don’t know in any comparative sense if there is a big advantage to ABA or none at all in terms of a kid with comparable ability. It may discourage health plans and government from covering it because it’s not shown as the [one] way to help the child.”
For children who need a more group-oriented environment or greater flexibility in treatment than is common in ABA therapy, Dr. Moore refers families to centers such as St. David’s Center for Child and Family Development and Fraser. While flexibility is not impossible with ABA therapy, Dr. Moore said, it would take a highly-skilled therapist to implement it.
When families go to Fraser, they receive a mental health assessment for their child that will highlight the areas of intervention that a child needs, said Pat Pulice, Fraser’s director of autism services. “The question is where and how autism is interfering with day to day functioning,” Pulice said. She added, “Just because you have autism doesn’t mean that you necessarily need intervention at a certain amount of hours and frequency; it depends on your age and needs and how it impacts your development.”
Providers use the assessment to write a treatment plan that addresses the identified symptoms. Health insurance companies, Pulice explained, pay for interventions, or treatments, that are evidenced based and address the issues found in the assessment. Pulice said: “The method that you use isn’t exactly what you pay for. It’s the intervention. ABA as a whole isn’t paid for, but the behavioral strategies are paid for.”
With the focus on tailoring programs according to the assessment and families’ insurance, whether that insurance comes through Medical Assistance or another source, families can usually receive coverage for interventions, Pulice said. Fraser also collaborates with schools and counties to help ensure that children receive consistent services in their areas of need.
Ultimately, Dr. Moore at Children’s Hospitals had this to say about autism coverage: “We would like to see resources as well as possible to serve all the kids, not just the small population that can get into ABA. We want to do as much as we can to help kids overcome autism and the limitations caused by their disorder.”
Yet, what of those low income families for whose children ABA would be the best treatment option? When most people think of Medical Assistance, Abdull suggested, they think of aid to low income families and individuals. “ABA is being denied for them,” she said.
© 2012 Andrea Parrott