A lack of home care nurses already plagued Delaware families in need of help. Then COVID-19 hit
Home care nurses are the reason Kateri Morton can find time to sleep, eat and shower.
The mother of two from Wyoming, Delaware, depends on support from nurses to help take care of her 9-year-old son Joey Scruggs, who was diagnosed with Down Syndrome and autism. Throughout his lifetime, he's experienced an endless string of medical challenges.
These nurses, who provide everything from emergency care to potty training to physical therapy, are often the hidden heroes in health care – especially for parents like Morton.
More than a visiting nurse who may stop by a patient's home to give medicine or help with exercises, the registered nurses and licensed practical nurses who work in home health care are deeply integrated in families' lives. Many pediatric nurses have worked with the same patients for years, becoming like family.
But when the COVID-19 pandemic hit Delaware, this support that nurses provide – what one Dover mom called a "lifeline" – was threatened.
Finding reliable nurses became more and more challenging. Instead of nurses calling out two or three days a week, Morton was now looking at an entire month without nursing – a reality that prompted her to take time off work and ultimately resulted in her losing her job over the summer.
"It’s so frustrating when you work so hard and you can’t even find a way to support your family," said Morton, adding that she can't consider returning to work as an ultrasound tech until she knows she has reliable nursing.
Morton's story is familiar to others in the First State, too.
While the COVID-19 pandemic has prompted a focus on hospital staff, nurses that work one-on-one in patients’ homes – and the families they serve – have faced significant challenges this past year, including fears about exposure, lack of personal protective equipment, added responsibilities and increased pressure on an ongoing nursing shortage.
From a Dover mom trying to juggle working from home while caring for her medically-complex son, to a Marydel nurse who must determine whether she or a parent will attend a child's doctor's appointment with limited visitors, to a Camden nurse worried about exposing her own family while working 12-14 hour shifts in protective gear, the pandemic has altered the lives of these Delawareans in profound ways.
These nurses and families say it's more important now than ever that people recognize the vital role of home care nursing.
One nurse, 'keeping it all together'
Even before the pandemic, a typical day with Joey will keep you on your toes, his nurse Jen Carey said.
When Carey arrives at the house, she helps Joey with his medicine, nebulizer treatments and inhaler. She works on improving personal care skills like teeth brushing and potty training.
They then go downstairs where she continues to expand Joey’s diet. When she first met "Joe-Joe," what many of his friends and family call him, he hardly ate anything. Now, his favorite foods are marshmallows, blueberries, chips and yogurt.
Though it’s not a typical breakfast, “it’s so exciting to see him eat,” Carey said. “We’re really proud of him for that.”
He otherwise uses a G-tube, or feeding tube, to receive enough nutrition.
Later, he might review flashcards with his mom to learn how to pronounce certain words and sounds. Since the pandemic, Morton has homeschooled Joey and his brother, something she says she can only do with the support of a daytime nurse.
"When you’re at home, it’s you, your family and your nurse," Carey said. "And your nurse keeps it all together."
Home care nurses wear many hats, including teacher, occupational therapist, playmate, friend and disciplinarian. The pandemic only added more responsibilities, like helping with remote learning or scheduling virtual doctor’s appointments, to their lists.
This one-nurse-show often leaves these health care professionals exhausted, but as nurse Diane Schepens said, they do this work because they love it.
"It takes a special person to manage medically fragile patients in their own environment," she said.
While Joey's mother said she has support from family members, not everyone feels comfortable watching Joey with this severe medical needs. His condition means Morton can’t simply hire a nanny or babysitter either.
When Joey gets sick, she said it’s “terrifying,” because within 30 minutes he can be on the ground in respiratory distress.
Many of the half a dozen nurses interviewed said there’s a perception that home health care is less work or simply a babysitting gig because home care nurses devote their care to one patient at a time rather than 20 in a hospital.
Nurse Gina Krambeck from Camden was quick to refute that idea.
“I’d like to see a babysitter perform CPR on a trach-vent child and save their life,” she said.
Home care nurses serve as the go-to person in case of an emergency, and they have the same qualifications and passed the same exam as hospital nurses – they just chose the home setting, said nurse Manny Tanyi from Bear.
Tanyi agreed with others in the field who said it’s that one-one-one care that drew them to the profession. Many nurses have been with the same families for years.
“They would say that I’m a part of their family,” said Jen Saulsbury, a home care nurse from Milford. “They introduce me that way. ‘This is Jen, she’s a nurse, but she’s really a part of our family.’”
When Morton’s father passed away in September 2018, Schepens volunteered to drive more than an hour and watch Joey during the services.
“She even stayed, and went and cried with us,” Morton said. “It doesn’t get more personal.”
Schepens said she got chills as she recalled the service, a moment when she was reminded why she chose to be a home care nurse.
“I’ve been able to help this family,” she said.
Nurses masked up
While most home care nurses said they had instinctual fears or anxiety as the pandemic started, they said leaving the families they serve was not an option.
In the beginning of the pandemic, providers like Tanyi’s employer, BAYADA Home Health Care, grappled with a lack of personal protective equipment. It became even more complicated once the state mandated personal protective equipment like masks for nurses.
"Everyone's time was spent scrambling to find those goods,” said Jean Mullin, executive director of the Delaware Association for Home and Community Care.
The association advocates for home health care agencies in the state and helped them apply for PPE from the Delaware Emergency Management Agency. But, Mullin said, hospitals were often prioritized over home health care.
Armed with extra protective gear like goggles, masks and gloves, as well as frequent testing and training on preventing the spread of COVID-19, Tanyi said, “even if I have to work with someone with COVID, I have the courage that I can [serve them].”
When these agencies could access PPE, it was costing them $3.70 on average per hour of service, which raises the hourly cost from 3 to 15% depending on the type of service, she said. One large national provider reported using more PPE in a single month during the pandemic than they did the entire previous year.
While Mullin understands that hospitals are often the focus of federal and state support, she said home care "gets forgotten.”
Unlike a hospital, home care nurses do not have a central supply of PPE and must carry everything with them. Some nurses said they feel supported by their employers, but sometimes it feels like the agencies themselves don’t have enough supplies to give their nurses. This can be a deterrent, Schepens said.
“Who’s going to work and put themselves on the line if their company can’t provide the necessities that they need to work each day?” she asked.
Nursing shortage gets worse
Nurse turnover is a big concern for home care agencies, and experts say the pandemic has only compounded an existing nursing shortage.
"Prior to COVID, we knew there was a tsunami of need coming for many years now," Mullin said.
Part of this is due to Delaware's consistently growing aging population. People over the age of 60 make up more than a quarter of the state's population, according to Census Bureau 2019 estimates, and that is only expected to increase.
The Delaware Division of Services for Aging and Adults with Physical Disabilities predicts in a 2019 report that the number of people over the age of 60 will have increased by 30.7% between 2015 and 2025.
Experts agree that over the last several years, more families have shifted away from institutional care like nursing homes and rehab centers, and turned toward home care instead.
But as the demand increases, the supply of nurses continues to fall.
Because nurses can often receive higher pay in hospitals or nursing homes than in home health care, agencies have long struggled to retain and attract nurses, said Torie Carter, director of BAYADA’s Delaware Pediatrics South Office in Milford. Many home care nurses only work part-time at BAYADA and full-time somewhere else because of the pay, she said.
Scheduling also plays into the turnover, said Gail Hamblin, a Dover mother of three who depends on home health care. She said Medicaid would only approve a nurse to help put her 9-year-old son on the bus at 7:30 a.m. and meet him at the end of the day at 3 p.m., totaling less than four working hours.
Hamblin said it’s often difficult to find nurses that can build a good relationship with her family and son, who has Down Syndrome, autism and several medical challenges. Twice she has had nurses whom she loved, but she said both left for higher-paying jobs.
Morton has faced the same challenge. Before the pandemic, she would rotate through five different nurses who would come on a consistent schedule, but now she is down to only one daytime nurse.
“It’s a revolving door of nurses no matter how hard they try,” she said. “Almost all of them left because of the money. Money, and I guess COVID now, too.
The pandemic has further amplified the need for more home care nurses in a few distinct ways, Carter explained.
For one, more people with older family members are opting for home health care because they want to avoid sending their loved ones to facilities where visitation is limited. This means more patients and an increased demand on an already small pool of nurses, Carter said.
For younger patients, though, she said it has had the opposite effect. With many kids learning remotely and their parents working from home, families are opting to limit the number of nurses who come into their homes.
Instead of multiple nurses visiting in alternating shifts, they may have only one or two nurses come in for longer periods.
The nurses that stay on these cases often extend their hours – one nurse said she works shifts up to 14 hours long – which means they must give up or limit their time spent on other cases.
Meanwhile, some nurses chose to stop working altogether because they needed to stay home with their own children during remote learning. Others are forced to leave their job for periods of time after testing positive for COVID-19 or being exposed to someone who tested positive.
These factors have all resulted in shuffling schedules and, Carter said, making sure all families get the coverage they need is "like a big puzzle."
And for families who need a nurse with ventilator experience, or someone who can communicate in Spanish, the challenge of finding qualified nurses is even greater.
Carey, Joey’s nurse, said she is frequently called to care for a patient with higher medical needs, leaving Joey and his mom without a nurse.
“I could never work enough hours, it seems like, to make sure there is a nurse for every one of my patients,” Carey said.
A nurse for 25 years, mostly in home care, Krambeck said she has never seen the shortage like it is now with multiple home care agencies working to cover a single case.
Hamblin, the Dover mother, is working from home and said it is nearly impossible to do any work without a nurse. She described one instance of calling her provider in tears after a nurse couldn't come.
“It’s a lifeline,” she said. “If I hadn’t had nursing, I don’t know where I would be mentally.”
To slow the turnover and create more stability for families, advocates say that home care nurses need salaries and benefits that are competitive within the health care industry.
To do that, home care agencies need more money in their pockets.
Though providers may also receive funding from Medicare, private pay and private insurance, the push for increased funding typically focuses on Medicaid, a combined state and federal program that helps low-income Americans pay medical bills.
The way that Medicaid funds health care services like home health care is complicated because the reimbursement for different types of service varies.
There is one method for reimbursing home health services, which include any type of in-home medical service like nursing or physical therapy, under a doctor's written plan of care.
A separate method is used for private duty nursing, which is the type of service that most of the nurses interviewed provide, because they are registered nurses or licensed practical nurses who give continuous, individualized care beyond what a visiting nurse would offer.
Private duty nursing is reimbursed per hour of service. The current rates set by the state are $51.50 per hour for registered nurses and $46.14 per hour for licensed practical nurses.
Two managed care organizations pay for these services in Delaware: Highmark Health Options and AmeriHealth Caritas Delaware. State law requires that these organizations pay at least the floor rates, mentioned above, for private duty nursing, but home care agencies can negotiate for higher rates.
The last time the state increased these base rates was October 2006, according to Steve Groff, director of the Department of Health and Social Services' Division of Medicaid and Medical Assistance.
Hearts for Home Care, an advocacy organization through BAYADA, has been pushing for increased reimbursement rates for years. Saulsbury has been going to Legislative Hall over the last three years and said it's disheartening to prepare posters and show up just to hear "no" every time.
State officials will say that raising reimbursement rates is not so simple because, unlike the federal government, the state must balance the budget after increasing funding like Medicaid.
This is complicated further as many states face significant revenue loss due to COVID-19 and must still find ways to balance their budgets. Many states have looked to specifically cut Medicaid spending.
Still, in a recent meeting between Delaware's Division of Medicaid and Medical Assistance and parents, legislators encouraged parents to send testimonies to their representatives.
While Medicaid reimbursement rates are part of the solution for better supporting home health care, former Cabinet Secretary of DHSS and University of Delaware Professor Rita Landgraf said "it’s not the entire story."
Now that the pandemic has highlighted the importance of home health care, it may be the ideal opportunity to look at how the overall health care industry can value this profession more, Landgraf said, be it through supporting the pipeline of private duty nurses in higher education or looking closer at the shifting needs of families.
"It’s a transformation of an entire industry," she said. "How do we transform in a way that’s responsive to what people actually want and makes sense for a given individual?"
Beyond state funding and an increased focus on the industry, nurses and advocates like Mullin agree that it's more than just the money: they want to feel appreciated for the work they do.
"Even though nurses primarily function first from a position of compassion, there’s something that is insulting and degrading about not being paid commensurate with what you’re contributing," Mullin said.
The word "superhero" came up several times in one conversation about home health care nurses, and these nurses want to know that the word means something, as Schepens, one of Joey's nurses, said.
For Schepens, one of Joey's nurses, it's simple: "Sometimes all they need to hear is, 'I appreciate you, you’re doing a great job.'"