Characteristics of Medicaid Policies for Children With Medical Complexity by State

Abstract

ImportanceFamilies 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.ObjectiveTo clarify how eligibility and coverage for CMC differ for Medicaid beneficiaries across states with different policies and managed care penetration.Design, Setting, and ParticipantsThis 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.ExposuresState variation in Medicaid eligibility and delivery policies.Main Outcomes and MeasuresEligibility pathways and coverage mechanisms for CMC in each state.ResultsA 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 RelevanceThe 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.

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity

“…This may limit the generalizability of quantitative findings, such as the consolidation of race and/or ethnicity into a binary variable and the low variability of zip code-level estimates. Additionally, within the electronic health record, the primary care office where this data was extracted does not record those on the Medicaid Medical Complexity Waiver [ 52 ], or who are referred to and/or receive home nursing care. Therefore, this analysis was limited in its ability to identify risk factors for referral and access to home nursing care in this region.…”

Underinsurance Among Children With Special Health Care Needs in the United States

“…While our study examined a national-level cohort, the high prevalence of underinsurance among CSHCN from middle-income households is likely reflective of state-level variation in the 2 main criteria used to determine children’s eligibility for Medicaid coverage: household income and medical condition. Along with eligibility criteria, the type of coverage (ie, fee-for-service or managed care) provided to CSHCN enrolled in Medicaid varies across state lines . Compared with their peers enrolled in private insurance, CSHCN enrolled in public insurance have fewer out-of-pocket costs for medically necessary care, and parents are more likely to report that their health insurance always meets their children’s needs .…”

“…Along with eligibility criteria, the type of coverage (ie, fee-for-service or managed care) provided to CSHCN enrolled in Medicaid varies across state lines. 24 Compared with their peers enrolled in private insurance, CSHCN enrolled in public insurance have fewer out-of-pocket costs for medically necessary care, and parents are more likely to report that their health insurance always meets their children’s needs. 20 As high cost-sharing for private health insurance coverage becomes more common, families of middle-income CSHCN without access to public insurance coverage in their state are left with a few options for comprehensive, affordable health insurance coverage for their child’s ongoing health care needs.…”