The Economics of Special Education for Individuals with Developmental Disabilities including Down Syndrome

About 7.3 million individuals with developmental disabilities receive special education at a federal cost of $18.4 billion annually. While special education focuses primarily on learning, it also provides health-related services and increases well-being through social interaction and inclusion. When special education as a public entitlement ends, ages as early as age 18 or as late as age 25, depending on the state, individuals lose health- related services. Qualitative evidence suggests that about 60% of individuals are not enrolled in education programs, vocational rehabilitation, or employed after exiting special education, suggesting low levels of social interaction and inclusion. In response, ten states recently extended the age at which special education is mandated to end, and several other states are considering legislation to do the same. However, the costs and benefits of extending special education are unclear. There is no quantitative work accounting for differences across states or selection bias. As a health economist, I am skilled at applying causal inference methods in large administrative datasets. A K01 award will enable me to achieve my long-term career goal of creating evidence to shape healthcare policies supporting individuals with developmental disabilities, focusing on Down syndrome. The training plan will expand my knowledge of Medicaid data and policy, special education, and the diversity of experiences for individuals with developmental disabilities through fieldwork, coursework, and working groups. An interdisciplinary mentorship team with deep knowledge of individuals with developmental disabilities via lived experience, clinical expertise, and Medicaid data and policy expertise will support the training. It will directly inform the research through three aims: Aim 1: Describe the cohort of individuals with developmental disabilities in Medicaid data aged 10-24 across all 50 states, making aggregated totals publicly available. Aim 2: Quantify how aging out of special education impacts health outcomes and utilization for individuals with developmental disabilities while controlling for individual-level factors. Aim 3: Examine the differential impact of aging out of special education by impairment type, geography, race, and ethnicity. The K01 will enable me to become an independent investigator answering critical policy relevant questions for transition age youth with developmental disabilities, focusing on Down syndrome. Results will provide actionable data guiding policymakers, clinicians, researchers, and advocates. For example, results will inform current policies extending special education to later ages. If aging out of special education adversely impacts one’s health, it may make sense to federally expand special education to later ages or to provide additional resources to minimize the effect of the transition. Findings will support the development of an R01 proposal studying the impact of losing special education on long-term health with a focus on potentially protective factors or especially historically and socially marginalized subgroups, such as those with Down syndrome. Project Number: 1K01HD113828-01A1 | Fiscal Year: 2025 | NIH Institute/Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) | Principal Investigator: Adrienne Sabety | Institution: STANFORD UNIVERSITY, STANFORD, CA | Award Amount: $131,166 | Activity Code: K01 | Study Section: Biobehavioral and Behavioral Sciences Study Section[CHHD-H] View on NIH RePORTER: https://reporter.nih.gov/project-details/1K01HD11382801A1