Frontline Initiative Autism Spectrum Disorder

Autism insurance reform:
A political issue


Jennifer S. Reinke is a doctoral candidate in Family Social Science. She is also a Graduate Research Assistant at the Institute on Community Integration at the University of Minnesota and the Assistant Editor of FI.

Autism is estimated to cost the United States $126 billion a year. This suggests that we need to take action to address this critical public health issue. The goal of this article is to provide Direct Support Professionals (DSPs) with a summary of federal and state policies related to autism and provide suggestions for how DSPs can take action.

Federal initiatives

There are several federal initiatives related to improving the lives of people with autism and their families. Here, we highlight two important Acts —

Combating Autism Reauthorization Act of 2011 (CARA)

President Obama signed the Combating Autism Reauthorization Act (CARA) of 2011, H.R. 2005 into law in September 2011. CARA authorized $693 million in federal funding to continue these three important initiatives —

  • Developmental disabilities surveillance and research,
  • . Autism education, early detection, and intervention, and
  • Interagency Autism Coordinating Committee (IACC), the primary advisory committee that coordinates all federal efforts concerning autism.

The Achieving a Better Life Experience Act (ABLE)

The ABLE Act was written to help people with autism and other disabilities and their families save for disability-related expenses. If authorized, the ABLE Act would allow families to save money in tax-exempt accounts for things like future education, housing, transportation and employment support. More information can be found at congress/bills/112/s1872.

State Initiatives

Many advocates believe the best way to secure access to services for people with ASD is through mandated health insurance coverage. Thirty-two states have authorized autism insurance reform laws as of August 2012. All but eight of the remaining states have introduced or are proposing autism insurance reform laws.

The rules for health insurance coverage for people with ASD vary significantly among states. For example, individuals are covered up to $36,000 a year in California. But there is no dollar maximum in Massachusetts or Indiana. Sometimes insurance coverage within a state might change depending on a person’s age.

Health insurance coverage has improved in many states for people with ASD. But there is still a long way to go. Many states have not yet authorized any legislation around autism insurance reform. Insurance companies in these states are not required to pay for any behavioral therapies such as Applied Behavior Analysis (ABA). This leaves families with difficult financial decisions and limited treatment options.

The NADSP Code of Ethics calls DSPs to “advocate for laws, policies, and supports that promote justice and inclusion.” Answer this call by being knowledgeable about current initiatives in your state: http://www.autismspeaks. org/advocacy/states. Support any state legislation that would mandate coverage for behavioral therapies.