Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19.
Joseph Caldwell, Miriam Heyman, Michael Atkins and 1 others
PMID 35379576WHAT IT FOUND
Self-directing home care allowed participants to hire family members and enforce strict safety rules, which prevented service gaps.
However, they faced severe barriers accessing protective equipment and vaccines, often paying out-of-pocket. Many relied on telehealth to maintain mental health and social connection.
Key findings
01The ability to hire family members helped prevent service gaps and increased trust in worker safety during the pandemic.
02Participants faced significant financial burdens because they had to pay out-of-pocket for personal protective equipment and other essentials.
03Telehealth was welcomed by many participants as it facilitated access to mental health services and social connection.
STILL TO COME
How it was doneWhat they found
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What it does not show
The sample was not representative of all self-direction programs, with an overrepresentation of participants from Massachusetts. Most participants were younger than the typical self-direction population, which often serves those aged 65 and older. The study could not clearly distinguish between participants in budget authority versus employer authority models. Data collection occurred before full vaccine rollout, so experiences with vaccine access may differ from later periods. Recruitment required access to technology and advocacy networks, potentially excluding individuals with greater isolation or digital barriers.
Declared interests
The study was supported by the U.S. Government (Non-P.H.S.). The authors did not declare specific conflicts of interest in the provided text.
The easy way to misread this
Do not interpret these experiences as evidence that self-direction is superior for all patients. The findings reflect the specific experiences of 36 individuals who had the resources and support to self-direct, and they highlight significant systemic failures in public health response rather than a clinical outcome of the service model itself.