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The research sheds light on the opportunities and constraints in self-managed care during the pandemic

As the US population ages, the number of people receiving long-term services and support in their homes has grown, including the use of self-managed care. Self-managed care allows long-term care recipients to hire and manage their own workers, rather than using a home care agency. The COVID-19 pandemic has increased the tension of this sector.

New research from the University of Kansas shows that consumers have shouldered as much responsibility as typical home care employers, often with few additional resources and many barriers in the way. Policies that allow for more flexibility could help consumers address the challenges raised by worker shortages and budgetary constraints, according to the researchers.

A KU research team has been awarded $646,620 by the U.S. Department of Health and Human Services to study how the pandemic has affected Medicaid-funded home and community services, known as HCBS. In their first study published by the project, the researchers conducted 54 in-depth interviews with home and community service consumers, direct support workers, family caregivers, and providers in Kansas. They found that worker shortages, low wages, and increased employer responsibility placed on consumers contributed to unmet care needs, stress, and negative health outcomes. While some government flexibility has helped address these issues, more flexibility is needed, the authors write.

The study, published in the Journal of Applied Gerontology, was written by Carrie Wendel-Hummell, director of the Center for Research on Aging and Disability Options at KU’s School of Social Welfare; Tracey LaPierre, associate professor of sociology; Darcy Sullivan and Jennifer Babitzke, KU sociology graduate research assistants; Lora Swartzendruber, Social Welfare Research Project Coordinator; Tobi Barta, master’s researcher in social work research; and Danielle Olds of Saint Luke’s Hospital.

Self-managed care aims to put autonomy in people’s hands. You have a carer who comes to your home and you want to be able to trust the person to take care of you and help you with very intimate tasks in many cases. We have found cases where people couldn’t find anyone to interview due to workforce shortages. There have been instances where they wanted someone to wear a mask or get vaccinated, but they haven’t been able to find people who meet those standards.”

Carrie Wendel-Hummell, director of the Center for Research on Aging and Disability Options at KU’s School of Social Welfare

These challenges were among the four main themes uncovered by the study. First, pre-existing labor shortages have been exacerbated by the pandemic. Some who worked in the field have left due to COVID-19 safety concerns and wages have remained stagnant, the researchers said. Workers also lacked access to insurance or paid leave, which has become more important during the pandemic.

A second important theme highlighted how self-employed consumers assume much of the responsibility of employers without additional resources. While home care agencies could pool organizational resources or access CARES Act or ARPA funds, consumers of self-managed care could not access similar funds to improve workers’ pay or benefits. The state of Kansas had access to emergency funds to provide PPE to self-directed consumers, but this wasn’t always enough, and many self-directed consumers or workers paid for PPE out of their own pockets, the researchers found. Self-directed consumers also had other out-of-pocket expenses, such as advertising for help, running background checks on potential hires, or paying for gas for workers providing transportation-related services.

Appendix K provided federal guidelines that allowed state Medicaid authorities to temporarily adjust HCBS rules and regulations during emergency situations. This allowed for some flexibility and demonstrated the potential to alleviate unmet care needs, the study found, but it didn’t go far enough. For example, the policy has allowed consumers to hire family members to fill care gaps that were previously ineligible. However, hiring family members was not possible or ideal for everyone. Furthermore, while Appendix K allowed paid family members to reinvest their salaries in consumer care, the regulations were “surrounded by confusion and not always well communicated,” the authors wrote.

The final theme showed that structural constraints negatively affected the outcomes of caregivers, workers and consumers. The burden on health care workers and workers has increased in response to pandemic conditions and labor shortages. Such challenges limit consumer self-determination, which effectively defeats the purpose of self-directed care, Wendel-Hummell said. Eventually, this led to unmet care needs, such as falls while using the toilet and even a fatality when a caregiver might have been in the home but for shortages.

“There’s the increased depression and anxiety that I have, skin rashes and bed sores, and those kinds of things that I didn’t have to deal with a lot before,” one consumer told the research team.

The authors wrote that policy could go a long way in addressing the challenges. The potential shown by Appendix K was proof of that. The study was based in Kansas, but many states have similar challenges, especially those that haven’t expanded Medicaid, the researchers said. Expanding Medicaid would help provide health care coverage for many of these low-wage workers. Legislative approval is needed to raise wages or provide workforce benefits for Medicaid-funded home and community services, the researchers said. A wage increase to keep pace with other sectors that are considered entry-level jobs, as well as the budgetary authority to provide a cash buffer to cover consumer costs incurred by the pandemic and to improve hiring, would help address those challenges , as well as providing health insurance, paid vacation and other benefits, the authors wrote as part of their recommendations.

In addition to easing pandemic-related needs, the researchers said such policies could address ongoing problems in the direct care workforce.

“If anything, these challenges are growing because we have new disabilities from COVID, an aging population, and greater hesitancy to enter long-term care facilities due to growing concern about contracting COVID-19,” LaPierre said. “People want to be able to get treatment in their own homes.”


Magazine reference:

Wendel, CL, et al. (2022) “Anything that benefits workers should benefit the client”: opportunities and constraints in self-managed care during the COVID-19 pandemic. Journal of Applied Gerontology. doi.org/10.1177/07334648221143604.

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