Born early at 30 weeks weighing just 1 pound, 13 ounces, 7-year-old Weston Clardy was subsequently diagnosed with cerebral palsy.

The Easley child cannot move his arms or legs. He can’t speak. He requires the help of a machine to breathe. And he needs a feeding tube to eat.

Joshua Bower came into the world in 2019 after a normal pregnancy and birth.

But by four months, he was having trouble eating and breathing. And at six months, he weighed only 11 pounds, couldn’t sit up or roll over, and had no head or neck control. He, too, was diagnosed with cerebral palsy. 

Because their medically complex conditions require specialized care, both children have been approved for private duty nursing by South Carolina’s Medicaid program. 

But agencies that provide that service say that because of the low reimbursement rate, combined with the nationwide shortage of nurses, they are struggling to find and retain staff in a landscape where nurses can get much higher pay in other health sectors. 

“The pay gap is so extreme,” Joshua’s father, Aaron Bower, told Indexx Inc., publishers of Greenville Business Magazine, Columbia Business Monthly and Charleston Business Magazine.

“We’re not losing nurses over a couple dollars an hour,” he said. “But $15 an hour.”

“Our nurses, almost every single one of them, said that they can’t make a living (on what they’re being paid),” said Stephanie Clardy, Weston’s mom. “They have their families to support too. And nurses these days can go anywhere.”

The state Department of Health and Human Services, which oversees the Medicaid program, is working to address the workforce shortage as well as the “wage inflation that is occurring on a level the state has never before experienced,” spokesman Jeff Leieritz said.

It’s been increasing reimbursement rates and has established a work group to get feedback from providers on reimbursements and other ways it can retain and recruit the workforce needed to increase the capacity of the state’s home care provider network and ensure access to quality care, he said.

But families and agencies say it’s not enough.

Chris Lewis, regional director for South Carolina and Georgia with All Ways Caring HomeCare, which has more than 170 locations in 26 states including 10 in South Carolina, said staffing has been the primary challenge in home care for several years. And it’s only intensified during the pandemic because hospitals are paying high salaries and bonuses to attract nurses, he said.

“We had … (reimbursement) increases in the last two years for nursing services, but for the highest rate – enhanced services – our reimbursement is only $45,” he said. “We’re at a very steep competitive disadvantage in the nursing market.”

It’s a “national crisis,” said Barbara Lyons, principal with the independent consulting firm Cascada Consulting, which monitors health policy related to Medicare and Medicaid. 

“You have home care competing against much larger entities … that can offer higher pay and compensation,” she said. “They are definitely experiencing some significant challenges in recruiting and retaining staff.”

Joshua Bower is approved for 74 hours of care but gets 40, his dad says.

Weston Clardy, meanwhile, is approved for 60 hours but has 35, according to his mom.

Both families have nurses through BAYADA Home Health Care, a nonprofit provider with offices in 23 states, including South Carolina.  

The Greenville office has been able to stay afloat because it can shift funds from more profitable areas, said its director, Sue Randall. But she’s not sure how long it will stay because of the reimbursement rate. 

Aaron Bower says he worries about that. He’s called the agencies that operate in the Fort Mill area where the family lives, and only two or three will take Medicaid cases because reimbursements are so low. 

“If this gets so bad that these agencies start deciding not to work in South Carolina,” he said, “it will get really bad for folks like me.” 

Even after a July 1 reimbursement increase from the state, Randall says BAYADA’s turnover rate is around 60 percent. 

With nine counties in the Upstate to cover, it’s harder to find nurses for rural areas, she said. But in general, families are getting 30 percent to 60 percent of the care they’re approved for depending on location and availability of nurses, she said.

“It’s a struggle,” she said. “But when it comes down to it, people have to pay their bills.”

Nearly all of BAYADA’s clients are on Medicaid, Randall said.

The agency is reimbursed $29.80 and $35 an hour for licensed practical nurses, or LPNs, and $39.40 and $45 for registered nurses, or RNS, depending on the level of care and other factors, she said. In addition to salaries, those reimbursements must cover offices, utilities and other administrative costs, she said

Melissa Allman, director of government affairs for BAYADA in South Carolina, said home care providers got an increase on July 1 of 5 percent for “non-enhanced” services and 10 percent for “enhanced” services – which are for complex patients on ventilators, respirators, and feeding tubes, for example.

But across the board, she said, hospitals and nursing homes get higher reimbursements than home care. 

“Most nurses can make double the hourly rate in a hospital compared to home care,” she said. “We’re struggling as providers. I’ve been in this for 20 years and never seen it this bad.”

Hospital aides also make more than home health aides, who help with things like light housekeeping, meals, and personal care, she said.

And with other industries from retail to fast food offering higher pay during the pandemic to attract employees, it’s harder to recruit those aides as well, she said.

Last year, Allman said, BAYADA denied 56 percent of new referrals on average due to lack of staff. 

All Ways HomeCare employs about 150 nurses and more than 700 home health aides, Lewis said, noting that more than 80 percent of its clients are on Medicaid. 

The agency has been hiring more than 100 staffers each month but its roster continues to decline, he said.  

Staffing across the board is down 30 percent from before the pandemic, he said, and as a result the agency is serving at least 10 percent fewer clients than it was two years ago.

Noting the situation is the same in Georgia, Lewis said All Ways is putting significant efforts into growing its private-pay clients to compensate.

Magen Shelton is vice president of marketing for Interim Healthcare in Greenville, which employs about 300 nurses. The agency once had a robust program for medically complex children but dissolved it 15 years ago because of the low Medicaid reimbursement and inability to find staff, she said.

Now the company focuses more on adult and geriatric patients, most of whom are private pay or have long-term care insurance, she said, noting only about 13 percent of their clients are on Medicaid.  

“We struggle to break even with those Medicaid clients,” Shelton said. 

Interim was struggling to find nurses before Covid because of tremendous growth in the industry over the last decade as people age and want to stay at home, she said. 

“Throw in Covid, and hospitals are needing more staff and paying for travel nursing and sign-on bonuses,” she said. “And they also have the ability to work remotely so we’re now losing nurses to … more telehealth as well.”

Interim also has home health aides and is reimbursed $14.80 and $19.40 an hour for them depending on the level of care, she said.

About 600 in-home care providers are enrolled in Medicaid statewide, an increase of about 18 percent from the last full year before Covid, Leieritz said.

DHHS has been working on increasing the reimbursements, he said, raising rates by 15 percent in 2020 and by 5 percent and 10 percent on July 1. There was no increase in 2021, he said, but another increase is expected by Jan. 1, 2023.

And in February, he said, DHHS was approved for enhanced funding for home and community-based services through the American Rescue Plan Act.

Those ARPA funds are also being used to expand training resources and certification opportunities for home care workers, as well as a system to issue one-time payments to incentivize retention, Leieritz said.

“Through this initiative alone, (DHHS) has dedicated at least $81 million in additional funds to be invested by March 2025,” he said, “(and) … has allocated more than 40 percent of these ARPA funds to increasing pay for direct care workers and incentivizing staff retention.”

Some $8 million of those funds have been distributed so far, he said.

South Carolina Healthy Connections Medicaid providers – which include home care and other community-based providers – also got about $19 million through a temporary retainer payment initiative, he said. Home care providers were also eligible for federal Covid provider relief funds, he said.

“(DHHS) will continue to engage with its provider work group to gather further input on activities to ensure funding incentivizes staff retention and promotes the stability of this important provider network,” he said. “The agency is also reviewing data … to determine if additional reimbursement rate increases are needed to ensure continued access to quality care.”

But nursing shortages are reported across the board, leading hospitals to pay traveling nurses up to triple the salary plus bonuses to attract staff, said Kelly Bouthillet, president of the board of directors of the South Carolina Nurses Association.

 Lewis said that means his agency can’t grow the nursing side.

“When we’re trying to recruit a nurse and we’re up against $150 an hour,” he said, “we can’t compete.”

Bouthillet says there are different reasons for the thinning of the nursing workforce.

Some experienced nurses left the profession because the work environment became too stressful and traumatic under Covid, she said. Others opted to retire, and still others are moving into sectors that don’t involve direct patient care, such as medical device sales or teaching, she said.

But the bottom line, she said, is there aren’t enough nurses in patient care roles.

In an ironic twist, faculty, who need a doctorate or master’s degree to teach, are leaving as well because they feel underpaid too, Bouthillet said, adding that the shortage of faculty is one reason more nurses can’t be produced.

Because nursing faculty can earn more in health care practice than in teaching, $10 million in lottery revenue has been allocated in the state’s fiscal 2022-‘23 budget to increase pay for faculty in the state’s public colleges, universities, and technical colleges, according to the University of South Carolina.  

“These funds are a great step in our journey to tackle this complex challenge and will further expand public nursing programs across the state,” said Jeannette O. Andrews, dean of the UofSC College of Nursing. 

Bouthillet said that amount is welcome, but that every nursing program is supposed to get a piece of that.

“It’s not enough to add extra faculty to every program or increase faculty pay to where it should be,” she said. “More funds are needed to really impact the critical nursing shortage that South Carolina is experiencing.”

Valerie Testerman is an RN with BAYADA who says she considers home health care a calling.

“My clients are like family to me,” she said. “They are able to live a full life at home because of me.”

It also allows their families to be able to work and handle other matters, she said.

Home care has benefits over hospital care, like flexibility and autonomy, she said. But at $21 an hour – $23 for overnight clients – she says she must work 60 hours a week to make ends meet, especially as inflation impacts the cost of gas, food, and other necessities.

There are lots of opportunities to make more money as a nurse, she says, but she knows how hard it is for families to find the help they need.

“It’s tough. These people are depending on us,” she said. “And this is where my heart is – as long as I can make it.”

When families can’t get adequate skilled home care, there’s a greater chance of complications leading to hospitalizations and ultimately higher cost to the system, said Kate Chappell, coordinator of clinical education and associate professor at the UofSC College of Nursing. 

In South Carolina, Allman said, private duty nursing costs about $73,528 per year per patient while personal care services cost about $19,200 and the cost for nursing home care averages $93,000. 

There’s also added stress and pressure on the family, Chappell said.

When Weston Clardy was born, his doctors said he’d only live a few weeks, his mom said. That he survived was a miracle in itself, she said.

But he needs skilled care for his tracheotomy, is on 11 medications that must be managed, and needs physical therapy to prevent his hands and feet from constricting, she said. In addition, he’s had surgery on both hips and must be bathed and have his diapers changed.

A nurse not only ensures the special care that he needs, it keeps him out of the hospital, she said. And it allows the single mom to work. 

“Parents who don’t have nurses … (can’t) work because the child can’t go to daycare,” said Clardy, 30. “It’s devastating.”

In the past, she says, she’s had to leave a job when her nurses quit because Weston needs constant care. 

“It’s a good thing I have the nurse here to care for Weston,” she said. “Without it, I don’t know what I would do.”

There are many single parents in Clardy’s situation, Randall says, and families also struggle when a nurse gets sick or goes on vacation, because there’s no backup. 

Joshua Bower has a tracheotomy and a G-tube, his dad says. He can’t sit or walk or do anything for himself. Caring for him is a constant struggle, he said.

“My son … will never live independently,” he said. “His condition is so severe.”

Aaron and Jennifer Bower both work. Aaron, 38, is an executive with a medical device manufacturer, and Jennifer, 37, is a school teacher. They have health insurance, but it doesn’t cover home health nursing at the level needed for a medically complex child. 

On occasion, Bower said, they have a week with no nurse so he or his wife must stay home with Joshua. But that’s not possible on a regular basis with three other children to support.

“Even if my wife was in a position where she’d have to leave her job to take care of him, we’re not medical professionals,” he said. “If he was getting 74 hours a week like he’s supposed to, he would have a much better chance at actually developing some of the skills he needs that make him less of a burden on the system in the long run.”

Leieritz said DHHS must answer to taxpayers for spending across all 1.2 million Medicaid recipients in the state, noting wage pressures are being felt across all provider sectors, not just home care. 

“We have to look at it from an entire Medicaid standpoint,” he said, “using funds to provide a service and accounting for the entire population.”

Lyons says almost all states are paying close attention to the issue and that many have established working groups and other efforts to try to remedy the situation because if agencies don’t have the staff, they won’t accept new clients.

But the federal government also has a role to play, she says, given how much the workforce shortages affect the health care system nationwide.

“In most cases, that involves raising wages for staff because they’re low compared to what people can get in other sectors,” she said. “It’s a crisis that’s only going to get worse unless actions are taken to change the course.”