By Grace Vitaglione
Diondre Clarke, 60, started working as a direct care worker in home health care in 2013. She had taken care of her parents and grandmother when they were sick and found “a passion to help people.”
When the COVID-19 pandemic began, Clarke started working in assisted living facilities and in skilled nursing facilities, known colloquially as nursing homes. She made $20 an hour, but she still had to work a second job to make ends meet.
“It was tiring. It was a lot of work. I was stressed out,” she said. “I was scared that I was going to get COVID and take it home.”
Clarke, who lives in Mecklenburg County, is now an advocate for workers such as herself with the National Domestic Workers Alliance, an advocacy organization for millions of nannies, housecleaners and home care workers. Besides higher wages, direct care workers also need benefits like health insurance, as well as more training and support, she said.
The first step of advocating for those changes is defining who actually is a “direct care worker.” Is it someone who works in home health, or also in facilities such as nursing homes? Does it mean someone who only helps patients with activities of daily living, such as bathing and feeding? Do registered nurses count as direct care workers, or are they different because of their licensure and status?
Those were all questions raised at a workshop Jan. 15 hosted by the NC Center on the Workforce for Health in collaboration with the N.C. Department of Health and Human Services, North Carolina Institute of Medicine, North Carolina Coalition on Aging, North Carolina Area Health Education Centers and Piedmont AHEC.
The workshop was the first in a series focused on taking action on recommendations in a 2024 report by the Caregiving Workforce Strategic Leadership Council to strengthen the state’s direct care workforce.
Leaders of these organizations realized that figuring out who the direct care workforce includes is the first step in addressing the overarching problem: There aren’t enough of them. PHI, a long-term care policy research and advocacy organization, found that from 2018 to 2028, North Carolina would need to fill more than 186,000 openings in direct care. That includes nearly 21,000 new jobs to meet rising demand and 165,500 jobs that will be vacant as existing workers leave or retire.
Before efforts to bump up salaries during the pandemic, North Carolina direct care workers’ wages actually decreased over the past decade when adjusted for inflation, PHI found in 2021.
Lack of professional advancement and benefits, inadequate training, lack of respect and the aging population are also all challenges to growing the direct care workforce, according to the leadership council’s report.
Council members came up with recommendations to address these barriers, but it will take collaboration from all sides to achieve change, said Andy MacCracken, director of the NC Center on the Workforce for Health.
Who is the direct care workforce?
There are almost 120,000 direct care workers in North Carolina, according to PHI-sponsored research. Women make up 92 percent of the workforce, and people of color make up 61 percent.
Attendees at the event Jan. 15 agreed it’s important to create an effective framework to categorize and track direct care workers — but that’s easier said than done.
Clarke suggested looking at the workforce like a tree. The many branches make up all the different roles that could fall under the label of “direct care worker,” and they’re all connected by the trunk: providing care for a human being, she said.
The Bureau of Labor Statistics organized the direct care worker categories into personal care aides, home health aides and nursing assistants. All three assist patients with activities of daily living, such as eating and dressing, but they are separated by additional tasks that each role performs.
The bureau said personal care aides may also help with activities such as housekeeping and medication management, as well as engagement in community life and/or employment. The home health aides may also perform clinical tasks such as wound care and blood pressure readings, and they are supervised by a licensed professional remotely or intermittently on site. Nursing assistants may also perform certain clinical tasks under the on-site supervision of a licensed professional.
Some of the event attendees who work in behavioral health and with people with intellectual and/or developmental disabilities said the government’s list doesn’t include such important roles as peer support specialists and supported employment specialists, who help disabled adults find and maintain employment, said Trish Farnham, program coordinator with the N.C. Coalition on Aging, during her talk at the workshop.
The federal codes also don’t include independent providers, or direct care workers employed by consumers through programs like those offered through Medicaid — in which consumers can choose their own care providers instead of receiving one through an agency. The agencies also don’t include those in the “gray market” — workers hired by people or households with private funds.
PHI’s research divides the groups based more on setting: home care workers, who work in private homes; residential care aides, who are employed in places like group homes and assisted living communities; and nursing assistants in nursing homes.
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‘An emerging collective identity’
Defining the direct care workforce should bolster “an emerging collective identity” while recognizing the distinct groups within it, Farnham said at the workshop.
An umbrella definition would also allow NCDHHS to create a workforce inventory, according to the Caregiving Workforce Strategic Leadership Council report. That would allow better data collection and analysis.
Currently, the state “lacks reliable and actionable data” about the direct care workforce, the report said. Addressing the workforce challenges requires data focused on turnover, job satisfaction, pay and whether employees leave for another field.
Still, nailing down a definition does mean drawing the line between “who is in and who is out,” Farnham said.
It’s also important that direct care workers are included in the conversation — titles affect people’s perception of their status and others’ perception of their abilities, Clarke said.
Lack of respect is already a challenge in the workforce, the report said, as services provided by direct care workers are often undervalued. A 2021 study from the FrameWorks Institute, a social sciences think tank, found that Americans often consider care work outside a hospital setting “less skilled and less important.”
The report also recommended that NCDHHS partner with public and private employers to standardize job descriptions and credentials, but it acknowledged that can be a difficult task as experience is often nuanced.
Someone may have been working for 30 years and have experience in a certain task even if their title, certification or license doesn’t correspond with it, Clarke said.
‘Coordinated persistence’
Farnham said while the workforce crisis seems “insurmountable,” she was encouraged by the spirit of collaboration at the event. Many groups in the direct care space are used to having to battle each other for limited funding and resources, but the shortage is unifying people, she said.
The Caregiving Workforce Strategic Leadership Council’s report included four recommendations to address the crisis: define the workforce, advance the data landscape, create a living wage and expand apprenticeship programs. Each will have its own workshop later this year.
MacCracken of the NC Center on the Workforce for Health said that often an insightful report comes out, but its publication is the “end of the conversation.”
He aims for this to be different: The goal of the four workshops is to figure out how to adequately implement the report’s recommendations. The N.C. Institute of Medicine will pull the information together at the end so that it’s actionable for the state agencies and other entities responsible for implementation.
The center is also working on building data tools to measure their progress, he said.
Other actions may include advocating to state lawmakers at the NC General Assembly for higher Medicaid reimbursement rates for direct service providers, which MacCracken said will likely be “a big ask” of the legislature.
It’s also necessary to hold the various stakeholders accountable at the same time as dynamics of the outside world might change, he said. That’s what the Center on the Workforce for Health is for.
“We’re not going to solve all these problems within a two-year legislative term. So our ability to create a space that is designed for that coordinated persistence over time is really important,” MacCracken said.
In the meantime, stakeholders from educators to employers have been receptive because everyone recognizes the crisis, he said. Individual employers are used to reaching out to individual educators at the regional and local levels, which is less efficient than bringing everyone together.
“For a long time, what we’ve been doing hasn’t been working collectively. So it’s actually not a hard sell for folks to come together and say, ‘Hey, we need to figure out a different way to approach this,’” MacCracken said.
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