“Anything that benefits the workers should benefit the client”: Opportunities and constraints in self-directed care during the COVID-19 pandemic

There are many benefits to the self-directed care (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 home and community-based services (HCBS) consumers, direct support workers, family caregivers, and providers. 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. The abstract (free) and full report (subscription required) are available. Read the full article.