Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19

BACKGROUND: In response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction. OBJECTIVE: Our study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being? METHODS: We partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type. RESULTS: Three main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology. CONCLUSIONS: This study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.