Experiences with care coordination and backup plans in home and community based services during the COVID-19 pandemic in Kansas

The COVID-19 pandemic was an emergency event during which backup plans became widely relevant. Although backup plans are required for Medicaid-funded Home and Community Based Services (HCBS) as a key risk management strategy, we know little about their effectiveness. The purpose of this study was to explore whether backup plans and care coordination met the needs of HCBS consumers during the COVID-19 pandemic in Kansas. An interactive, convergent mixed-methods design within a community-based participatory research framework was used. Data came from 70 in-depth interviews with HCBS consumers, caregivers, workers, and providers, as well as 100 surveys from consumers, asking about experiences receiving or providing care during the COVID-19 pandemic in Kansas. Inductive coding was used to identify major themes for the qualitative data. Descriptive and bivariate analysis were used for quantitative data. One-third of survey respondents reported not having a backup plan and 39% went without formal homecare services for at least 2 consecutive weeks. The pandemic exacerbated and exposed deficiencies in care coordination and backup plans in a managed care environment. Interview participants expressed great need for backup workers during the pandemic but struggled to find these supports. Although family, friends, and providers stepped in to help fill gaps, there remained many unmet care needs. Findings indicate that improvements are needed in care coordination to support the development and maintenance of backup plans that can be successfully drawn on to avoid interruptions to care.