“Anything that Benefits the Workers Should Benefit the Client”: Opportunities and Constraints in Self-Directed Care During the COVID-19 Pandemic.

Abstract:

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 to
resources is essential to successful outcomes. Considering the autonomy and
flexibility associated with SDC, it is important to understand how SDC
responded to the COVID-19 pandemic and the resources available to help manage
this situation. We conducted 54 in-depth interviews with HCBS consumers,
direct support workers, family caregivers, and providers to examine the
impact of COVID-19 on HCBS services in Kansas. Findings illuminate how
self-directed consumers carried a lot of employer responsibility, with
limited resources and systemic barriers constraining self-determination and
contributing to unmet care needs, stress, and burden. Policy flexibilities
expanding the hiring of family members were beneficial but insufficient to
address under-resourced working conditions and labor shortages that were
exacerbated by the pandemic.