Autism spectrum disorder (ASD) is a complex developmental disorder characterized by repetitive behaviorand delayed social interaction and communication. The CDC estimates that ASD affects approximately 1 in 68children, with symptoms appearing as early as 12 months, and continuing throughout the lifespan. Evidence-based treatment can enhance cognitive and adaptive functioning in children with ASD, but associated servicesare expensive, and financing for these services is inconsistent. Until recently, private health insurers oftenexcluded ASD services from benefit plans, requiring many families to pay out-of-pocket. Even though 39 stateshave passed autism insurance mandates, more than half of children with ASD in the United States do not haveprivate insurance that covers needed care. Many states use Medicaid Home and Community Based Services(HCBS) waivers both to expand eligibility for Medicaid-reimbursed services and to provide services notcovered by their Medicaid plans under the premise that, without these services, certain individuals are at highrisk of institutionalization. Medicaid is the largest US payer of healthcare for children with ASD, serving asmuch as 45% of US children with ASD. In our previous NIMH-funded study, we identified 50 current orformer Medicaid waivers in 29 states that explicitly include children with ASD. We also collected detailedinformation about these waivers, including waiver inclusions and restrictions, estimated service provision andinstitutional costs, and inclusion of core ASD-related services. Ideally, these waivers would increase thenumber of children receiving Medicaid-reimbursed outpatient care for ASD and reduce their use of inpatientcare. While we have done significant work examining the effects of these waivers on reducing unmet need,little is known about the effects of these programs on healthcare service use and costs. In an effort to optimizethe quality and cost of Medicaid waiver services for ASD, this R01 proposal, which is responsive to PA-13-216“Research on Autism Spectrum Disorders” and to the Interagency Autism Coordinating Committee’s strategicplan objective of examining theimplementation and dissemination of interventions and evaluating service costeffectiveness,would use up to 12 years of data from the Medicaid Analytic eXtract (MAX) files, merged withMedicaid waiver program data collected in our earlier study, to address this knowledge gap. Specifically, wewill examine the characteristics of Medicaid HCBS waivers for children with ASD that affect Medicaidenrollment, healthcare service use, and Medicaid-reimbursed expenditures for children with ASD. This studywill combine the largest national data source on healthcare experiences of children with ASD withcomprehensive primary data on state policies that drive healthcare use for almost half of these children. Wecombine these data with a sophisticated, longitudinal research design to provide rigorous estimates of theeffects of these waivers. The results will have important implications for national and state-level autism policy,as we identify mechanisms associated with more effective and efficient health services for children with ASD.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
