Characteristics of Medicaid Policies for Children With Medical Complexity by State: A Qualitative Study

IMPORTANCE: Families of children with medical complexity (CMC) report barriers to accessing affordable coverage for the full range of services their children may need to optimize their health outcomes. Medicaid enrollment through medical need–based eligibility mechanisms can help cover these service gaps. Understanding state-by-state variation in how CMC access Medicaid may allow policy makers and pediatricians to help families navigate needed services for CMC. OBJECTIVE: To clarify how eligibility and coverage for CMC differ for Medicaid beneficiaries across states with different policies and managed care penetration. DESIGN, SETTING, AND PARTICIPANTS: This qualitative study used semistructured interviews with state Medicaid representatives from 23 states and Washington, DC, from February 1, 2020, to March 1, 2021. Enrollment pathways and coverage processes were discussed. Interviews were transcribed and content analysis was performed. Participants included Medicaid directors, a designee, or a state-identified policy leader with expertise in and/or responsibility for child-focused programs. EXPOSURES: State variation in Medicaid eligibility and delivery policies. MAIN OUTCOMES AND MEASURES: Eligibility pathways and coverage mechanisms for CMC in each state. RESULTS: A total of 43 informants from 23 states and Washington, DC, participated, which permitted data collection regarding almost half of the US. Four distinct eligibility pathways were characterized, with 3 specific to CMC, and the pathways that include the presence of waiting lists were distinguished. In addition, 3 coverage types at the state level were identified, consisting of fee-for-service, Medicaid managed care, or both. Two main connections between pathways and coverage mechanisms for CMC were described. CONCLUSIONS AND RELEVANCE: The findings of this qualitative study suggest that state patterns in Medicaid eligibility and coverage for CMC have implications for access, including some states with substantial waiting periods for these families. Future work is needed to understand the implications of these differential Medicaid medical need–based eligibility pathways and subsequent coverage mechanisms on use of health care resources and expenditures, as well as considerations regarding challenges families of CMC face due to state-by-state variation.