Self-Directed Care in Home-Based Long-Term Care During the Pandemic: Policy and Practice Implications

The COVID-19 pandemic highlighted strengths and challenges of the self-directed care model for home-based long-term care. We discuss policy and practice implications drawing on interviews with over 50 home-and-community-based-services consumers, caregivers, workers, and providers in Kansas. Low-pay, lack of benefits, rising wages in competing sectors, enhanced unemployment and COVID-19 concerns exacerbated workforce shortages that compromised consumer safety and well-being. The lack of budget authority for self-directed consumers in Kansas limited their ability to address these issues. Furthermore, the self-directed model was excluded from emergency funding sources that would have enhanced pay and benefits for workers, including sick pay for quarantine, pointing to the need for targeted funding. Emergency flexibility allowing paid family caregivers addressed care needs for some but is temporary and should be expanded. In the managed care model, MCOs still kept their capitated payment despite significant unfilled care hours, and thus pay-for-performance incentives need to be revisited

“Anything that benefits the workers should benefit the client”: Opportunities and Constraints in Self-Directed Care during the COVID-19 Pandemic

Reuse is restricted to non-commercial and no derivative uses.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

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

Supplementary Material for “Anything that Benefits the Workers Should Benefit the Client”: Opportunities and Constraints in Self-Directed Care During the COVID-19 Pandemic by Carrie L. Wendel, Tracey A. LaPierre, Darcy L. Sullivan, Jennifer Babitzke, Lora Swartzendruber, Tobi Barta, and Danielle M. Olds in Journal of Applied Gerontology.</p