Twelve years ago our daughter was diagnosed with autism. At the time, the doctor explained to us that autism was a neurological condition, and there was effective treatment that could help her. We had good health insurance and we’d always paid our premiums, so we assumed that insurance would pay for the prescribed treatment.

Because when your child has a serious medical condition which can be effectively treated, that is what they do, right? That is the whole purpose of insurance, no? If she had cancer, insurance would cover chemotherapy. If she had a brain tumor, insurance would cover the surgery.

But our daughter had autism. And we were about to discover what so many autism parents already knew – that having even the most comprehensive insurance plan meant nothing in the face of autism.

got insurance? not if you have autism!

It wasn’t right. It had to change. And though my knowledge of the system consisted of an insurance card, a sick child, and no coverage for her treatment, I decided to do something about it.

As Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM), I organized a grassroots effort to pass legislation requiring health insurance to cover autism treatments. Over several years, our small group of parents, armed with no more than an idea and a passionate determination, slowly made our way… from a legislator’s office in the basement of the State House to Fenway Park, we had the honor of watching Governor Patrick sign our bill into law in front of hundreds of people.

got insurance? now what?

We celebrated the victory. We had a new law. It was one of the strongest in the country. But even as the ink dried, we knew there was still work to be done. Because autism treatment had not historically been covered by insurance, the entire community –from families to professionals- all had questions about how the new law would work.

Recognizing this tremendous need for information and support, UMass Medical School established the Autism Insurance Resource Center at New England INDEX last year. I am honored to direct the Center, and proud of the work that we do in educating the community about autism insurance laws and in helping people with autism obtain coverage.

I wish I could say that our work is done; unfortunately true systemic change is slow. But we’ve proven that a small group of parents –armed with no more than an idea and a passion to do what is right – can make it happen.

Next week we will discuss how the law is working and how the Center is helping the Autism Community access coverage under the law.

 got insurance? yes we do!

About the author

Amy Weinstock is the Director of the Autism Insurance Resource Center at New England INDEX.  She served as Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM) and led the grassroots effort to pass Massachusetts’ Autism Insurance Law.