In Dialogue: Dr. Nakeshia Knight-Coyle on the Direct Care Workforce

Direct care workforce recruitment and retention challenges are widespread, yet the need for the essential care and support that direct care workers provide will only increase over time, as the U.S. population ages. It is therefore essential, now more than ever, to understand the role of structural inequality in shaping direct care jobs—to pave the way for policy and practice solutions that improve job quality, strengthen workforce recruitment and retention, and, in turn, improve the quality and continuity of care.

A leading expert on this topic is Dr. Nakeshia Knight-Coyle, who earned her PhD in Sociology from Portland State University and is now Director of Aging and People with Disabilities in the Oregon Department of Human Services. Dr. Knight-Coyle spoke earlier this year with Dr. Morgan Ridgway, a former PHI Research Associate and ACLS Leading Edge Fellow, about her research on the direct care workforce, her role as a policy advocate and leader, and what she envisions as a better future for direct care work.

Note: This conversation occurred prior to Congress enacting significant cuts to Medicaid that will seriously undermine our nation’s health and long-term care infrastructure. Although this conversation does not explicitly outline what is needed to meet this current moment, it reminds us of the precarity of the long-term care sector and what truly is at stake in our continued advocacy for quality jobs and quality care. The view presented here remains a critical reference point for advocates seeking to ensure that older adults, people with disabilities, and family caregivers have access to the vital supports they need and deserve, now and in the future, and furthermore, that direct care workers remain central in conversations about the future of long-term care, and have the resources, recognition, and respect they deserve.

PHI: You recently became the Director of the Office of Aging and People with Disabilities (APD) in Oregon. What drew you to this role?

Dr. Nakeshia Knight-Coyle: My interest in this role is personal and professional. My mother has Alzheimer’s and is in a memory care facility in Florida. I am also someone living with an invisible disability. I have multiple sclerosis, or MS. I know firsthand the challenge of showing up, working through pain, and advocating for quality care for myself and others.

In addition to a personal draw to this work, I believe deeply in public service and have been fortunate to have worked in systems serving individuals prenatally through end of life. This perspective has been particularly valuable to me in serving older adults and people with disabilities.

PHI: You’ve been able to connect your personal experience with long-term care to research on the structures of this work. Can you tell us about your research?

NKC: Across systems, throughout my career, I have observed and experienced the differential treatment of Black women employees. Over time, I developed a curiosity about why. I decided to focus my dissertation on building understanding of the experiences of Black women direct care workers in long-term care. This is critical given the overrepresentation of these women in direct care work—and the threat that current and future workforce shortages have on ensuring safe and quality environments and experiences for the people we serve.

PHI: How would you describe the landscape of direct care work in Oregon?

NKC: Like other states, Oregon struggles to sustain an adequate workforce supply to meet the demand. Among the biggest issues confronting our systems that support older adults and people with disabilities are changing demographics. In the coming years, the number of individuals aged 65 and over will outnumber those aged 18 and under for the first time. Younger generations are having fewer children, which means families are getting smaller.

With the shift in demographics, we anticipate a rise in demand for long-term care as the workforce needed to meet the growingly complex needs of those we serve continues to decline. Currently, in Oregon, family members contribute an estimated 437 million hours of care each year, saving the state $5.9 billion. However, demographic changes threaten this essential support by reducing the number of younger people and family members available to assist with unpaid and paid caregiving.

It is a double-edged sword—costs associated with this demographic shift are going to require states, including Oregon, to make difficult decisions about who can access Medicaid long-term services and supports. At the same time, without these supports the burden on family caregivers will increase, forcing many to leave the workforce. Even at today’s wages, many people cannot afford paid support for their loved ones or themselves. This may place additional stress on their income and housing stability, potentially leading to negative outcomes such as abuse and neglect.

Given these dynamics, we are at an inflection point in how we manage our aging and disabilities systems. We need to listen, strategize, prepare, and drive our system towards the vision and outcome we hope to achieve. We must also be strategic in how we use data to not only tell our story, but also as a foundation for our decision-making. The demographic shifts underway are unprecedented and will require innovative and proactive investments and measures that equip aging and disabilities systems with the resources and tools needed to meet the day.

PHI: What are some key challenges that direct care workers face right now? 

NKC: There are many challenges confronting our direct care workforce today. As a society, often we speak about this workforce in terms of how important they are due to the essential care they provide. However, our treatment of these workers does not reflect the critical nature of this role.

Direct care workers are paid low wages that are insufficient to care for themselves and their families, leading many to rely on public assistance to make ends meet. Additionally, some workers are exploited and report wage theft, which involves not paying workers for work performed.

There is also an overrepresentation of Black women among direct care workers, who may experience racism and discrimination in interactions with their clients, clients’ families, co-workers, and supervisors. Finally, the majority of this workforce is women with intersecting identities (regarding gender, race, and nativity) that influence how they are treated.

While we could look at these factors separately, they are connected. Direct care work, as it stands, is a modern-day example of the historic oppression of women’s labor. It is important to understand the root cause that is foundational to racialized and gendered low-wage work. Addressing these issues demands more than just improved wages and career lattices. It also requires understanding the dark history of genocide and slavery in this country so that we, as a society, can work towards dismantling the racism and discrimination inherent in our institutions and structures.

PHI: What policies or initiatives are you most excited about in terms of their potential impacts for direct care workers?

NKC: Workforce challenges are not unique to aging and disabilities systems and with the coming demographic shifts, many sectors will be competing for a smaller workforce supply. With these changes we might see new innovations that I am optimistic about. These include more multigenerational care models that co-house adult day and childcare centers, improved training that helps workers respond to increasingly complex needs, and new and different ways of engaging people who are aging and living with disabilities on solutions to best meet their needs.

These models better reflect our families and communities. They also show us how intersectional and multigenerational care systems have many other benefits, providing necessary supports that can help meet increasingly complex needs.

PHI: Looking ahead, what do you think the future of direct care work looks like?

NKC: As demographics flip and older adults are a larger part of the population than children, we have an opportunity to explore and rethink late-in-life careers for people who are 50 and older. This population could offset workforce shortage issues we see today. We need to think about those opportunities and plan for them now.

We also have to be realistic that these opportunities must be more compelling for the worker as well as the people they are serving.