Autism is the fastest growing developmental disability in the United States today, with the CDC reporting the incidence of autism at 1 in 68 children. The cause and cure of autism remain unknown, and because autism affects each person at different levels of severity, a large number of symptom presentations are possible, making treatment difficult and costly. Despite the existence of effective, evidence-based early intervention treatments such as “Applied Behavioral Analysis (ABA)” therapy, which has lasting, long-term benefits and has been shown to improve functioning while reducing lifetime costs, the growing prevalence of autism has been declared a public health crisis by many states because those with autism who don’t receive enough or any treatment are more dependent on society and have been recently estimated to cost $236 billion in care from childhood through adulthood.
Due to receding state budgets, many states are not able to adequately address the autism population’s early intervention treatment needs through state-funded programs, and since health insurance did not cover treatment for autism until the Autism Insurance Reform Mandates which are the subject of this Note, families could not get treatment for their children with autism unless they were able to pay out-of-pocket. To provide a secure means of accessing treatment for people with autism, as of October 2015, 43 states and Washington D.C. have enacted “Autism Insurance Reform Mandates” requiring health insurance coverage of treatment for autism. While widespread existence of these mandates is surely progress and an acknowledgement of the problem, there is great legislative inconsistency among the mandates, which has created an imbalanced state of affairs for people with autism in the United States in that there are now some states that are better for autism families to live in than others. If the mandates are to accomplish their job of reducing the cost of the autism population to society in the long-term, it matters equally as much that the appropriate evidence-based treatments are covered, and that the length of coverage is measured not by arbitrary criteria like age, but by the continued efficacy of treatment, even if this means continued coverage through adulthood. Thus, there is still much work ahead to instill in society the notion that investing in the present to maximize the potential of this population will pay off in the long term for everyone in the country.
This Note traces the issues that lead to the ongoing national autism insurance reform, and offers insight as to how different modes of advocacy contributed to improving the lives of autism families in California, deemed one of the best states to live in for autism families. The goal of this Note is to compare how those strategies did or did not work in North Carolina, the most recent state to adopt a mandate, and to extend these lessons in social, political, and legal change in these successful states to the remaining states that lack coverage and to improving coverage in the states that currently provide coverage.