By Jaymie Baxley
North Carolina does not have enough private duty nurses to provide home-based services to Medicaid participants with complex medical needs, creating a crisis for many working families who cannot single-handedly manage their loved ones’ care.
The shortage is expected to worsen over the next decade. Demand for registered nurses in home health and hospice settings is predicted to surpass the state’s supply by nearly 18 percent in 2033, according to projections generated by the Cecil G Sheps Center for Health Research at the University of North Carolina.
Home health advocates say low pay has been the biggest barrier to recruiting and retaining nurses. The state’s Medicaid program currently reimburses employers for private duty nursing at a rate of $45 an hour.
The state budget approved last month by the North Carolina General Assembly includes a long-requested increase that, once implemented, will raise the hourly rate to $52. But state Sen. Gale Adcock believes an even bigger investment is needed.
Adcock, a Democrat whose District 16 covers a portion of Wake County, knows how demanding the job can be. A nurse by trade, she worked in home health as an employee of the Wake County Health Department in the 1980s.
“None of the budgets actually gave the increase that the industry is saying it’s going to take to make sure they have not just the supply of nurses they need but also the trained nurses that they need,” she said, adding that advocates had lobbied for a rate of $65 an hour. “This is a special kind of care that people get at home. It’s not like working at a hospital.”
More than 1,800 North Carolinians receive private duty nursing services through Medicaid. Many of them, Adcock said, are unable to walk, talk or feed themselves.
“They’re on ventilators or they need nebulizer treatments,” she said. “They have very complicated medicines to take that have to be timed just right and have to be given in certain ways. They’re not able to communicate because they may have had a stroke, or maybe they’ve had a tracheostomy or they’re on oxygen.”
Some patients, she added, will “need this kind of support for the rest of their life.”
Toll on parents
Children make up nearly half of the state’s private duty nursing patients.
Jenny Hobbs, co-founder of the nonprofit Advocates for Medically Fragile Kids NC, said the shortage has taken a financial toll on parents, some of whom have been fired from their workplaces or forced to quit their jobs.
“If you don’t have reliable nursing, you can’t reliably show up for work,” she said.
In 2022, the advocates’ group surveyed 54 parents and caregivers whose children receive in-home care. Forty-seven percent of respondents said they were unable to work because of the nursing shortage, while 17 percent said they had lost their jobs.
The shortage has also affected parents’ health. Many suffer from sleep deprivation because their children require around-the-clock monitoring, Hobbs said.
“A lot of these parents are providing 24/7 care, so they’re not getting sleep,” she said. “When you’re overtired because of chronic lack of sleep, you’re gonna make mistakes.”
Those mistakes, she said, can have grim consequences.
“Ask any of the children’s hospital complex care teams, and they’ll tell you that there have been deaths related to the nursing shortage,” said Hobbs, who has three medically fragile children of her own. “It’s unfair and sad, and it breaks my heart.”
Erin Fraher, director of the Carolina Health Workforce Research Center at the Cecil G. Sheps Center, said the overall scarcity of nurses across the state has created a situation where “all employers in the ecosystem are competing for registered nurses and licensed practical nurses.”
Hospitals often have the edge when it comes to recruitment. They usually offer better pay, Fraher said, and are generally considered by nurses to be more appealing places to work.
“Home health, long term care and mental health have typically had a harder time recruiting nurses than hospitals,” she said. “Nurses would rather go into a hospital or would rather go into ambulatory care than they would in home health or long term care.”
In a survey conducted last fall by the N.C. Sentinel Network, eight out of 12 home health providers said they were experiencing “exceptionally long vacancies” for open positions. In one anonymous comment, a respondent wrote that the starting pay for nurses was $45 an hour at their local hospital.
While that’s the same amount the state currently pays for at-home nursing, private duty nurses earn far less because their employers take a percentage of that money to cover their overhead and administrative costs. Jessica Britton, a private duty nurse who works for the nonprofit BAYADA Home Health Care, recently told The News & Observer that she makes $22.50 an hour.
The new rate approved by the General Assembly is higher than what is offered in South Carolina, which pays $42 to $45 an hour for private duty nursing. A registered nurse could make even more in neighboring Virginia, where the rate is $71 to $81 depending on the location.
While Hobbs is in support of North Carolina’s new rate, she worries that the additional money will never reach the pockets of private duty nurses. She said several nurses did not receive a raise from their employers after a previous rate increase in 2020.
“The point is to incentivize them to come into home health or to stay in home health,” Hobbs said. “But if it’s not getting to their paycheck, then it’s not actually doing what it’s intended to do.”