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The Autism Insurance Resource Center

The Autism Insurance Resource Center is a comprehensive resource for consumers, providers, employers, and educators on issues related to medical insurance for autism treatment.

In the last five years, we have witnessed a national trend of states passing legislation requiring private insurance to cover medical treatments for autism.  The growth of this movement has been rapid; in 2005 only one state (Indiana) had an autism insurance law. Today, a majority of states have enacted laws, and many more states are actively working to pass similar legislation.  Because most autism treatment has historically never been covered by insurance, the entire community – consumers, physicians, treatment providers, employers, educators, insurers, and regulators, have numerous questions about how the new laws will be implemented and what the impact will be.

In response to this need, the Autism Insurance Resource Center was created in March of 2011.  We are a resource which provides information and support for consumers and the autism community to help educate them about autism insurance laws and obtain coverage for medical treatment. The Center is based out of the Eunice Kennedy Shriver Center at UMass Medical School. We are part of the Shriver Center’s long-standing information and referral program, New England INDEX, a comprehensive information service for people with disabilities.

I am privileged to serve as Director of the Center. As Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM), I was actively involved in the process to pass the autism insurance law in Massachusetts: An Act Relative to Insurance Coverage for Autism (ARICA).  ARICA was signed into law in August of 2010, but almost before the ink had dried on the legislation, we recognized the tremendous need for information and support in order to help people with autism access the treatments covered under the law.  The needs fall into three major areas:

  • Consumers have questions about what treatments are covered under the law and how they should locate providers of services that qualify for reimbursement.  Clinicians and providers also have questions about obtaining coverage for treatments.  Because autism treatment has historically never been covered by insurance, providers encounter issues such as becoming credentialed by insurance plans and understanding medical necessity criteria, billing codes, and procedures.  Until the establishment of the Center, there was no central resource for information to answer these questions nor anyone whose job it was to address these concerns.
  • ARICA only applies to the state-regulated insurance policies and not to policies that are self-funded by corporations and federally regulated, the so-called “ERISA” plans (after the federal Employee Retirement Income and Security Act under which they were established).  Families who have these policies are not covered unless the corporations voluntarily agree to participate.  Most of the corporations are not familiar with ARICA, and we provide assistance to help families advocate for their employers to adopt coverage.
  • Mass Health and Common Health are not subject to the new law. But for many people with disabilities this is either their primary or secondary insurance. While not subject to ARICA, Mass Health is able to provide support for people with autism to access treatments through several means. We assist consumers with advice on how to access these.

The goal of the Center is to help the autism community understand what the new law does (and doesn’t) cover, and provide assistance to help consumers access coverage for treatment.

We implement our work by:

  • Information and referral by phone/e-mail on issues related to insurance coverage for autism-related treatments and services for consumers, providers, employers, educators and others.
  • Access to documents including legislation, FAQ’s, agency bulletins, etc.
  • Support for employers and individuals covered by self-funded (ERISA) plans including explanation of what autism is, why treatment is important, and the implications of including coverage, including references to research, actuarial studies, etc.
  • Information for individuals with coverage under Mass Health regarding access to autism treatments through Mass Health, purchase of private insurance through premium assistance, and other issues related to coordinating primary and secondary insurances.
  • Development of webinars on ARICA and related topics.
  • Focus Groups for providers and other groups to discuss specific issues related to implementation.
  • Trainings for parents, providers, clinicians, care coordinators, and educators.

The goal of the Center is to serve as a comprehensive information resource for the autism community on issues related to insurance, and to provide assistance to help consumers access coverage for treatments. We are Massachusetts based, and our current focus is on implementation of the Autism Insurance law which went into effect here this year.  However, we have designed the Center to be a replicable model and hope to serve as a template for the rest of the country.

By pairing the specific expertise in Autism Insurance legislation with the infrastructure of New England INDEX’s disability information and referral platform, we are an important catalyst for the implementation of the Massachusetts law, and a role model for the rest of the country. While the law is relatively new, and we have only been operating for a few months, we are already seeing anecdotal evidence of the systemic change that insurance coverage, and our work, is bringing to families affected by autism. Recently one of our resource specialists received a call from a parent whose child had been diagnosed with ASD that day.  The clinic gave her a packet of information with the advice: “The first call you need to make is to the Autism Insurance Center to figure out if you have insurance coverage.”

For more information about the Center, New England INDEX, or to access our resources, please visit the Autism Insurance Resource Center website or call 1-800-642-0249 to reach one of our resource specialists.

Amy Weinstock
The Autism Insurance Resource Center
New England INDEX, Eunice Kennedy Shriver Center
University of Massachusetts Medical School

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

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