Differences in State Medicaid Programs for Children with Medical Complexity May Lead to Care Inequity

October 31, 2022

Medicaid eligibility and coverage for children with medical complexity vary substantially by state, which gives rise to health equity concerns, especially if families move across state lines, according to a study from Ann & Robert H. Lurie Children’s Hospital of Chicago published in the journal JAMA Network Open. The study focused on Medicaid programs for these children beyond the traditional family income-based eligibility.

“State-by-state differences in Medicaid eligibility and coverage influence access to services for children with medical complexity, which may lead to delays in care, impacting these children’s health outcomes,” said lead author Jennifer Kusma, MD, MS, a pediatrician at Lurie Children’s and Instructor of Pediatrics at Northwestern University Feinberg School of Medicine.

Children with medical complexity have at least one complex chronic condition resulting in functional limitations, family-identified healthcare needs and dependence on medical technology. Due to high out-of-pocket healthcare expenses for the therapies these children require, pathways have been created for children with medical complexity to qualify for Medicaid in addition to their parents’ employer-based insurance, based on medically related criteria. These include the medically needy provision, waivers to cover the cost of institutional level care in the home setting, and waivers focused on home- and community-based services. States differ in whether they offer one or more of these options. States also differ in whether children with medical complexity are covered by Medicaid managed care or fee-for-service Medicaid programs, or a combination of these health plans.

The study used semistructured interviews with 43 state Medicaid representatives from 23 states and Washington, DC, in order to clarify the differences in eligibility and coverage offered by state Medicaid programs for children with medical complexity.

Dr. Kusma and colleagues found that the variation in state Medicaid programs for children with medical complexity can be profound. For example, while in one state these children can gain access to Medicaid coverage within months, in another state they can wait years for coverage.

“Our findings can inform future advocacy efforts regarding policy changes to address the needs of these vulnerable children, acknowledging state differences may persist over time,” said Dr. Kusma.

Matthew Davis, MD, MAPP, and Carolyn Foster, MD, MSHS, both from Lurie Children’s, are co-authors on the study.

Research at Ann & Robert H. Lurie Children’s Hospital of Chicago is conducted through Stanley Manne Children’s Research Institute. The Manne Research Institute is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine.