Autism Insurance Reform: A Comparison of State Initiatives

Abstract

Imagine the frustration of having a child with a disability, knowing there is a potentially life-changing treatment available but being unable to provide it - because it costs over $70,000 a year and is not covered by insurance. To what lengths would you go to provide this treatment for your child, even if it does not turn out to be the magic bullet you were hoping for? Would you take out a second mortgage on your house? Would you exhaust your savings or cash in your retirement accounts? For many parents of children with Autism Spectrum disorders ("ASDs"), this is their reality. ASDs describe a range of complex neurological disorders characterized by marked impairments in communication and social relatedness and the presence of restricted repetitive or sterotypic patterns of behavior, interests or activities. ASDs include autistic disorder, Asperger's syndrome, and Pervasive Developmental Disorder, Not Otherwise Specified ("PDD-NOS"). Each person with ASD displays an individualized pattern of behaviors or impairments, making a large number of symptom presentations possible. This extreme variability in symptoms and severity makes treatment difficult and costly. The Autism Society of America ("ASA") estimates that ASDs cost the United States $60 billion annually. However, the costs of lifelong care for each person with autism, according to the ASA, can be reduced by two-thirds with early diagnosis and intervention. Due to dwindling state budgest and the rising incidence of ASDs, many states are not able to adequately address the ASD populations' needs under current state-sponsored programs like Medicaid waivers, early intervention, and special education programs. Further, many individuals with ASD have difficulty obtaining adequate health insurance, meaning that interventions offered through private providers place an enormous financial burden on families. Advocates believe the most secure means of accessing treatment for individuals with ASD is through legislatively mandated health insurance coverage. As of January 2011, twenty-three states have enacted autism insurance mandates. All but three states have introduced or are proposing autism insurance reform laws. Furthermore, there is a proposed federal insurance mandate included in the Autism Treatment Acceleration Act of 2009 ("ATAA"), currently referred to the Senate Health, Education, and Labor Committee, that would require states to madate coverage for medically necessary therapy for individuals with ASD. The goal of this Note is to provide a summary of issues leading to the enactment of autism insurance reform, compare current state initiatives, and identify potential concerns in current legislative treatments, costs, and the current system for providing services. The next section provides a background on the health insurance industry's treatment of ASDs that led to the development of autism insurance reform. It includes information on risk-shielding techniques used by the industry and available consumer protection tools. The third section presents current state and federal autism insurance initiatives and specifically examines common provisions and controversies surrounding autism insurance mandates. The final section identifies problems with the current state and federal autism insurance reform initiatives and offers suggestions for addressing those issues.