Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jul;15(3):101313.
doi: 10.1016/j.dhjo.2022.101313. Epub 2022 Mar 10.

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19

Joseph Caldwell  1 , Miriam Heyman  2 , Michael Atkins  2 , Sandy Ho  2
Affiliations

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19

Joseph Caldwell et al. Disabil Health J. 2022 Jul.

Abstract

Background: In response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction.

Objective: Our study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being?

Methods: We partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type.

Results: Three main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology.

Conclusions: This study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.

Keywords: COVID-19; HCBS; Medicaid; Self-direction.

PubMed Disclaimer

References

    1. Kaye H.S., Harrington C., LaPlante M.P. Long-term care: who gets it, who provides it, who pays, and how much? Health Aff. 2010;29(1):11–21. - PubMed
    1. O'Shaughnessy C.V. The George Washington University; Washington, DC: 2014. The Basics: National Spending for Long-Term Services and Supports (LTSS), 2012.
    1. Harrell R., Lynott J., Guzman S., Lampkin C. AARP; Washington, DC: 2014. What Is Livable? Community Preferences of Older Adults.
    1. Olmsteadv. L.C.ex rel. Zimring, 527 U.S.581, 597. 1999.
    1. Murray C., Tourtellotte A., Lipson D., Wysocki A. Mathematica, Prepared for Centers for Medicare and Medicaid; Chicago, IL: January, 2020. Medicaid Long Term Services and Supports Annual Expenditures Report: Federal Fiscal Years 2017 and 2018.

Publication types