How personal advocacy influences autism policy

October 29, 2014


  • Marianne Udow-Phillips, director of the Center for Healthcare Research & Transformation
  • Dr. John F. Greden, founding chair of the National Network of Depression Centers and executive director of the University of Michigan Comprehensive Depression Center

It will take leaders like Lt. Gov. Brian Calley, who are willing to speak up about their personal journey, to move public policy in a way that will make the difference for the more than 1 million people in Michigan who suffer from other depression, bipolar illnesses and other mental disorders.

In 2012, Michigan passed significant legislation to expand insurance coverage for children with autism spectrum disorder, a group of developmental disabilities that can impair a person’s behavior and social and communication skills. A little more than two years later, it appears that implementation of the legislation has challenges—but also considerable promise—for achieving its goals.

While it is too early to see the legislation’s full impact, there are important lessons in the law’s passage for mental health advocates who want public policy to go beyond autism according to a recent report from the Center for Healthcare Research & Transformation, “Autism Spectrum Disorder in Michigan.”

The debate on autism coverage had been an active and contentious one when Gov. Rick Snyder was first elected governor in the fall of 2010. Bills to expand coverage for autism spectrum disorder were considered and defeated in 2010 because of cost concerns expressed by health plans and groups representing employers.

The legislative climate changed, however, when Snyder assumed office in January of 2011 because a father with a young daughter with autism also assumed an accompanying legislative leadership position that year.

Lt. Gov. Calley, who had long advocated for expanding autism services, served as a powerful advocate for finally moving this legislation forward—a key missing piece in advocates’ efforts to broaden the legislation past autism.

Those willing to speak about their own or their family member’s illness have always moved public policy—whether it is securing disease-specific research funding in the budgets of the Centers for Disease Control or the National Institutes of Health, or expanding coverage of certain types of services included in the Affordable Care Act. Calley’s voice for advocating for autism coverage in Michigan follows this tradition.

At the time of the autism coverage debate, mental health advocates argued that the legislation should have been expanded to cover all mental disorders. Relative to other mental health disorders, autism spectrum disorder is relatively rare and advocates argued that the legislation should benefit all of those suffering from mental health disorders.

Autism spectrum disorder is estimated to affect a little more than 1 percent of children compared to an estimated lifetime prevalence for mood disorders among adults approximating 20 percent.

Despite the overall greater magnitude in prevalence, disability, and financial costs for depression, bipolar illnesses and other mental disorders, advocates for broadening the legislation beyond autism failed. While several factors contributed to this failure, notable was the lack of a leader with as powerful a voice and as personal a story as Calley in the autism debate.

Mood disorders or other mental health diagnoses like schizophrenia continue to carry with them a stigma that autism simply does not. Parents and public figures are not afraid to speak out and organize for better services for individuals with autism. Autism is not seen as a failure of the child’s will or failure of the parent. Rather, it is generally seen as a developmental brain disease that requires coverage and research to improve treatment.

In contrast, while mood and other mental health disorders are also brain illnesses influenced by environmental events, they too often are erroneously seen as a failure of the individual or family. Stigma persists. That stigma results in a reticence by leaders in sharing their personal stories and engaging in advocacy that can move public policy.

The implementation of the autism legislation in Michigan has not been entirely smooth.

Wait times range between one month and two years because there are still too few providers or approved specialized centers that can diagnose and develop treatment plans.

But there is no question that the legislation is changing how care is delivered and financed for many Michigan children, and new approaches to training practitioners and providing treatment are being established. Importantly, the autism legislation provides a platform to strengthen the delivery system and build additional approaches to help these children and their families.

Mental health disorders continue to take an incredible toll on individuals, families and society at large. More funding for research and dissemination of best practices is desperately needed. The payoff would be profound.