Wendel, C. L., LaPierre, T. A., Sullivan, D. L., Babitzke, J., Swartzendruber, L., Barta, T., & Olds, D. M. (2022). “Anything that benefits the workers should benefit the client”: Opportunities and Constraints in Self-Directed Care during the COVID-19 Pandemic. Journal of Applied Gerontology, 07334648221143604.

Self-directed care (SDC) models allow Home and Community Based Services(HCBS) consumers to direct their own care, thus supporting flexible,person-centered care. There are many benefits to the SDC model but access toresources is essential to successful outcomes. Considering the autonomy andflexibility associated with SDC, it is important to understand how SDCresponded to the COVID-19 pandemic and the resources available to help managethis situation. We conducted 54 in-depth interviews with HCBS consumers,direct support workers, family caregivers, and providers to examine theimpact of COVID-19 on HCBS services in Kansas. Findings illuminate howself-directed consumers carried a lot of employer responsibility, withlimited resources and systemic barriers constraining self-determination andcontributing to unmet care needs, stress, and burden. Policy flexibilitiesexpanding the hiring of family members were beneficial but insufficient toaddress under-resourced working conditions and labor shortages that wereexacerbated by the pandemic.