The Strain on Long-Term Care

ARTICLE BY Mike Krings, KU News Service

Demand for in-home long-term services and supports has been steadily growing in the United States in recent years. The COVID-19 pandemic has increased that need, but in-home services also increase the risk of COVID transmission. University of Kansas researchers will examine how the pandemic has challenged those who receive and provide the support, how they have adapted, and how in-home services can adjust, both to the current situation and for the future.

KU researchers will conduct more than 100 indepth interviews and over 800 surveys with homebased long-term services and supports consumers, personal care attendants, family caregivers, and agency providers about safety measures, training, and delivery of services during the pandemic. The project is part of a series of grants from the U.S. Department of Health and Human Services, through the Agency for Healthcare Research and Quality, to explore essential questions about the delivery of health care during the COVID-19 pandemic.

KU’s 18-month, $646,620 grant project will examine a growing, yet unique service setting. As America’s population ages, demand for in-home services and supports for older adults and individuals with disabilities has grown. Such services cost less than long-term care facilities, and older adults and individuals with disabilities tend to prefer home-based care. The demand will almost certainly grow even more because of the pandemic due to increased disability and perception that at-home care is safer, says Carrie Wendel-Hummell, director of the Center for Research on Aging and Disability Options in KU’s School of Social Welfare and principal investigator of the grant. Tracey LaPierre, associate professor of sociology, and Danielle Olds, research assistant professor in the KU School of Nursing, are co-principal investigators. Topeka Independent Living Resource Center will partner in the research.

“With nursing homes and congregational settings being hot spots (for COVID-19 transmission), demand for home-based care supports is likely increasing. Many health-care services shifted to telehealth, but a lot of longterm supports, such as cooking or bathing and other personal care cannot be delivered via telehealth,” WendelHummell says. “But there is still concern about potential spread among these networks providing care in people’s homes. Home-based care is less regulated than institutional care and not always guided by a clear chain of command.”

The system of providing long-term care is also complex. A large percentage is funded by Medicaid, $196 billion in 2018, which is funded roughly half by the federal government and half by state governments. Both have an incentive for services to be offered efficiently. Individuals can hire their own personal care attendants or receive services through a home-care agency, but these workers do not have licensing requirements. Family and friends also provide a lot of this care, usually unpaid.

The research will examine how policies and safety measures were adapted during the pandemic. In-home care can provide for adaptability and individualization in services, but it can also make it difficult to implement or enforce uniform safety practices. With demand almost certain to increase following the pandemic and as the population continues to age, the opportunity to help improve safety and services across a multi-tiered system is prime.

“This project will bring together the perspectives of home-care agencies, formal and informal caregivers, and consumers during the pandemic,” LaPierre says. “We’ll look at who makes the decisions for safety practices in home-based settings and how they are implemented. Businesses or agencies can say you need to wear a mask when you enter their establishment and can refuse you entry, but what happens when the services are provided in a home? Do individuals in the home have a say? Do the direct support workers going into the home have a say? How are these practices negotiated and enforced?”

While individuals receiving longterm support are often at risk due to health, advanced age, or disability, the project will examine challenges presented to the workforce as well.

“This is already a workforce in crisis. It’s commonly reported that these workers often leave the field because of low pay and poor benefits, including high rates of being uninsured,” WendelHummell says. “This makes it difficult for people to find reliable workers. We theorize the pandemic has only made these problems worse.”

Wendel-Hummell and LaPierre have both worked as personal-care attendants in various roles and have previously conducted research on Medicaid long-term services and supports prior to receiving the grant. The researchers will share their findings with stakeholders throughout Kansas as well as Medicaid administrators and policymakers at the federal and state level and fellow researchers. The goal is not only to document what went right and wrong but to improve services and safety for consumers and safety for providers for the long term.

Researchers will not only examine safety and care at all levels of home-based service, but any differences that may occur in urban versus rural areas. They are currently recruiting participants, and anyone interested in taking part can contact the research team at homecarestudy@ku.edu.

TOP Caregiver with elderly patient. PHOTOGRAPH Adobe Stock/Ursula Page