As the primary funder of long-term services and supports in the US, Medicaid plays a key role in shaping how and where over 1.3 million people with intellectual and/or developmental disabilities (I/DD) can access care from birth to end of life. Long-term services and supports (LTSS) can include help with Activities of Daily Living (e.g., bathing and dressing), Instrumental Activities of Daily Living (e.g., shopping and cooking), employment-related services, and behavioral supports. Landmark policy changes –such as the 1983 addition of section 1915(c) to the Social Security Act and the 2010 Patient Protection and Affordable Care Act – created opportunities for states to “rebalance” LTSS away from institutional care and towards home- and community-based services (HCBS), i.e., supportive services helping beneficiaries to live and thrive in their homes and communities.

Although HCBS can reduce costly and stressful acute care episodes and improve quality of life for people with I/DD and their families, access to HCBS has not been equitably realized. Due to racialized burdens and barriers to accessing high-quality LTSS, Black, Hispanic, Asian, and Pacific Islander beneficiaries with I/DD use fewer HCBS than white non-Hispanic beneficiaries, even after accounting for need. Newer Medicaid HCBS state plan options, such as the 1915(k) Community First Choice program, hold potential for reducing racial and ethnic inequities in access to HCBS via increased federal matching payments, unrestricted enrollment, and mandatory self-direction of services. Given inequities in access to HCBS, racially and ethnically minoritized beneficiaries may therefore be at higher risk for emergency department (ED) visits and hospitalizations, which can be costly and reduce beneficiaries’ quality of life.

The overarching goal of this dissertation is to understand the role of Medicaid policy in facilitating equitable access to and outcomes of long-term services and supports for Medicaid beneficiaries with I/DD. The specific aims of my dissertation will be to (1) quantify population-level racial and ethnic inequities in Medicaid 1915(c) waiver program enrollment among people with I/DD; (2) evaluate the impact of the Medicaid Community First Choice program on racial equity in access to HCBS for people with I/DD; and (3) estimate the impact of the Medicaid Community First Choice program on racial equity in emergency department visits and hospitalizations for people with I/DD. Findings will inform states’ strategies to target HCBS for racially and ethnically minoritized beneficiaries with I/DD, an urgent need given growing HCBS waitlists and calls to address systemic racism across LTSS.