Health care experiences of Medicare/Medicaid-eligible adults with disabilities in Connecticut: A qualitative study

In accordance with the Affordable Care Act, the Centers for Medicare & Medicaid Services awarded “State Demonstration Grants to Fully Integrate Care for Dual Eligible Individuals” (Medicare and Medicaid) to 15 states, including Connecticut. To inform the design of an integrated health and social service demonstration program to better coordinate care for Connecticut's dually eligible individuals ages 18 to 64 with physical, developmental and/or mental health disabilities, researchers conducted five statewide focus groups with 45 individuals; one with persons with developmental disabilities; one with parents of persons with developmental disabilities; one with case managers, nurses, and residential managers; one with persons with psychiatric disabilities; and one with persons with physical disabilities. Results from the wide range of experience and opinion clustered in four domains: current experiences, care coordination, consumer protection, and elements of an ideal health care and service program. Findings concern satisfaction with and ability to find medical care, medication management, transition issues including hospital to home and pediatric care to adult care, and the critical role of care managers. Significant issues noted include difficulty of finding providers who accept Medicare/Medicaid and understand the needs of individuals with mental health and developmental disabilities, medication management, and lack of care coordination. Desired elements of an ideal system include greater choice in medical and home care providers, increased coordination among providers and between medical and home care services, and increased support for 24-hour care coordination. Findings highlight the policy implications of designing a person-centered, integrated, and coordinated dual coverage system.