Column: Hope for autism treatment

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By Amy K. Weinstock

One of the most terrifying experiences as a parent is learning that your child has a serious disease. Imagine then finding out there is medical treatment that can significantly help, but your insurance won’t cover it. This was the reality I faced when my daughter was diagnosed with autism 16 years ago.

Each time the Autism Insurance Resource Center receives a call from a parent who says “my child was diagnosed with autism yesterday ...” that knife in my heart twists again. But today, unlike back then, there is coverage for medical treatment. It’s not always easy to access, but with information and support, many people are accessing life-changing treatments for autism that were nearly impossible to obtain only a few years ago.

Massachusetts is one of 40 states that, over the past decade, have passed legislation requiring insurance to cover medically necessary treatments for autism. Prior to this, only one state, Indiana, had a law, and insurance often excluded (ITALICS)any(END ITALICS) coverage for autism treatment. I am proud to have led the advocacy efforts for the law in Massachusetts, An Act Relative to Insurance Coverage for Autism, which was passed in 2010 and took effect in 2011.

Our mandate is one of the most comprehensive in the country, requiring insurers to cover evidence-based treatments and services that are prescribed by licensed physicians or psychologists. This broad coverage includes a range of treatments: counseling, and behavioral, occupational and speech therapies.

Almost before the ink had dried on the groundbreaking new law in Massachusetts, we recognized the tremendous work that lay ahead of us in implementing it. The University of Massachusetts Medical School established the Autism Insurance Resource Center, a comprehensive information and technical assistance resource for the autism community on issues related to insurance, that provides assistance and support to help families access coverage for treatments. We help thousands of families each year.

It’s one thing to pass a strong law, but quite another to translate that into coverage for treatment. Multiple issues confront families, such as figuring out whether their health insurance is even subject to the new law (state-regulated policies are included, federally regulated are not). And that’s just the beginning. Therapists and other providers, many of whom have never submitted insurance claims before, also face challenges. They find themselves dealing with different insurance carriers, prior authorizations, billing codes and copays. Any of these issues is a potential barrier to accessing treatment. Collectively, it can be overwhelming and hard to figure out even where to start.

“Am I Covered?” is an easy-to-use online screening tool we created with INDEX, a University of Massachusetts Medical School technology development group, that determines if a person’s insurance is subject to the Massachusetts Autism Insurance Law. For policies that don’t include coverage, it outlines alternatives for accessing treatment and points users to other resources. In some cases, separate individual plans can be purchased for individuals with autism or they may qualify for state Medicaid benefits.

Insurance coverage is complex, and even with the most robust coverage, people with autism face obstacles accessing treatment on many levels. We empower families with valuable tools and resources at a time when they are often dealing with enormously stressful situations.

Our impact is profound – one mom recently wrote to us: "Sixteen years ago, I was a parent with a sick child and an insurance card that provided almost no access to treatment. The situation today is much different. For many families, access to insurance ... is an integral reason my son continues to have the opportunity to live at home, stay in his community and remain in his school.”

We are privileged to play a key role in this, and invite those needing help to contact us.

Amy Weinstock is director of the Autism Insurance Resource Center at the University of Massachusetts Medical School’s Eunice Kennedy Shriver Center, and an instructor in the medical school’s Department of Psychiatry.