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. 2023 Apr;42(4):524-535.
doi: 10.1177/07334648221143604. Epub 2022 Dec 5.

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

Carrie L Wendel  1 , Tracey A LaPierre  2 , Darcy L Sullivan  2 , Jennifer Babitzke  2 , Lora Swartzendruber  1 , Tobi Barta  1 , Danielle M Olds  3
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"Anything that Benefits the Workers Should Benefit the Client": Opportunities and Constraints in Self-Directed Care During the COVID-19 Pandemic

Carrie L Wendel et al. J Appl Gerontol. 2023 Apr.

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.

Keywords: COVID-19; consumer-directed care; home and community based care and services; policy; qualitative methods.

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Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Interrelationships across themes and subthemes.
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References

    1. Advancing States . (2021). Demonstrating the value of MLTSS programs. MLTSS Institute.
    1. Bradley V. J., Fenton M. H., Mahoney K. J. (2021). Self-direction: A revolution in human services. SUNY Press.
    1. Caldwell J., Heyman M., Atkins M., Ho S. (2022). Experiences of individuals self-directing Medicaid home and community-based services during COVID-19. Disability and Health Journal, 15(3): 101313. 10.1016/j.dhjo.2022.101313 - DOI - PMC - PubMed
    1. Cascio M. A., Lee E., Vaudrin N., Freedman D. A. (2019). A team-based approach to open coding: Considerations for creating intercoder consensus. Field Methods, 31(2), 116–130. 10.1177/1525822X19838237 - DOI
    1. Centers for Medicare/Medicaid Services (CMS) . (2022). 1915(c) Home and Community-Based Services Waiver Instructions and Technical Guidance. APPENDIX K: Emergency Preparedness and Response.

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