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Member Research and Reports

Member Research and Reports

Texas A&M: Researchers Study How Private Citizens Change State Laws About Insurance Coverage of Autism Spectrum Disorder

Dr. Tim Callaghan of the Texas A&M School of Public Health & Dr. Steven Sylvester investigated the role of private citizens as policy entrepreneurs. In a study in Policy Studies Journalthey analyzed whether private citizens served as policy entrepreneurs in trying to change state laws to require that insurers provide health coverage for the treatment of autism spectrum disorder (ASD).

Health insurance companies have historically refused to pay for therapies, despite their importance to those with ASD. Parents of children with ASD began trying to influence state legislatures to require coverage, providing an opportunity for the authors to explore the role of private citizens as policy entrepreneurs.

The authors worked with the organization Autism Speaks to connect with parents from around the country who have fought for changes to state insurance mandates for ASD treatments. The authors used data from focus groups at the 2017 Autism Law Summit, and interviews with experts from autism speaks, to understand when and why private citizens step forward to become leaders in the push for policy change.

Their analysis found that the private citizens can become policy entrepreneurs, develop experience with complex policy subjects and regularly provide testimony during legislative debates. They also frequently had connections to key power brokers in the legislative process and clearly demonstrated the persistence characteristic of policy entrepreneurs, devoting considerable effort to changing policy. Education, income and free time were vital to taking on policy work. A sense of duty to fix something perceived as unjust was another commonly cited reason as was a personal need for change due to their own children being diagnosed with ASD.

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