- Erika and David Nestor with their daughter, Zoe, in their house
Natalie Briggs spent the first six months of her life in hospitals. Born at 30 weeks with an extra chromosome, she couldn't breathe or swallow on her own. She was deaf. Doctors predicted she'd be permanently confined to a hospital bed.
Now nearly 8 years old, Natalie has short brown hair and a big grin. She is walking, learning sign language and living at home with her parents in Shelburne, although she still breathes through a tube in her throat. Another tube delivers food and water directly to her stomach.
"She has to have eyes on her 24 hours a day to maintain her airway, monitor her for seizures," explained her mother, Amelia Briggs.
Amelia and her husband, Will, rely on nurses to help care for their daughter. The state determined that the family needed 112 hours of home nursing a week — and that Medicaid, the federal insurance program for those with low incomes and disabilities, should pay for it.
But the young couple says they receive only 70 hours of care a week. They take turns monitoring their daughter at night, each picking up a four-hour shift. On July 26, Amelia was on duty from 3 a.m. to 10 p.m., while Will, a software engineer, worked.
The Briggs' plight isn't unique.
For the last 20 years, the United States has suffered a nursing shortage, a problem that's expected to worsen as baby boomers age. The crisis is especially acute for home health agencies that provide nurses for families such as the Briggs, because they compete for employees with higher-paying hospitals and doctors' offices.
"It is challenging to provide that level of service, especially in a climate where there's a nursing shortage," said Judy Peterson, president and CEO of the VNA of Chittenden & Grand Isle Counties, but "we're trying very hard to do just that."
Despite that effort, the dearth of home health nurses is putting Vermont families with medically fragile children in an untenable situation, forcing them to forgo sleep, sacrifice careers and spend more time in hospitals. Advocates argue that neither the home health agencies nor the state has acted with enough urgency.
"The problem is that we're not compensating home health nurses at a rate that allows there to be enough of them to meet the needs of these kids with high needs, and so there's a shortage of nursing, particularly in the home and particularly nights and weekends," said Barbara Prine, an attorney with Vermont Legal Aid's Disability Law Project. "What that creates for these families who are dealing with really medically complicated kids is a tremendous amount of stress."
Prine was referring to what are called "high-tech" patients, defined by the state as those with "complex medical needs that require continual assessment and intervention by a nurse."
After a doctor concludes that a child qualifies, the Children with Special Health Needs program at the Vermont Health Department performs an assessment to determine how many hours of government-paid home nursing care the family ought to receive. The state Department of Disability, Aging and Independent Living runs a similar program for adult clients.
The problem is finding qualified caregivers. The state tasks private home health organizations with supplying the nurses and figuring out a schedule with families.
In the past, children in this program would likely have been sent to group homes or other institutional settings, now generally considered a less effective and more expensive long-term solution. Medical advancements have enabled them to live longer and in the comfort of their homes.
"This is the first generation ... raising these kids at home," said Valerie Wood-Lewis, whose son, Ben, died two years ago at age 15 from complications due to cerebral palsy. Finding nurses was a struggle for her Burlington family from the very beginning.
Ben spent 83 days in the Pediatric Intensive Care Unit at what's now the University of Vermont Medical Center — his stay prolonged in part because the Wood-Lewis family couldn't find any nurses through the VNA, a prerequisite for his release.
They were approved to receive 84 hours of help a week but rarely did. At times, Wood-Lewis said, "we went months with zero services." Unexpected cancellations were common. She recalled that VNA dispatchers "would call to say someone had canceled, and I would burst into tears." She cared for Ben and her three other children full-time.
Eventually, the Wood-Lewis family settled for lower-skilled support, hiring personal care attendants and training them to give Ben his daily enema, manage the machine that helped him breathe and handle his feeding tube, intervening if he started to choke.
"It was unacceptable to me," Wood-Lewis said.
For some families, the situation has deteriorated over the last couple of years.
"We're at our lowest level ever," said Erika Nestor, whose daughter Zoe became profoundly disabled after nearly drowning in their backyard pond when she was 1 and a half years old.
Zoe, now 14, has a breathing tube and a feeding tube, and experiences frequent seizures — eight every half hour, on a good day. She can't communicate or move at all. "She truly can't be left alone in a room," said Erika. "It's a full-time job."
Approved for 56 hours of home nursing a week, Erika and her husband, David, who both work in administration at UVM, were receiving just 17 hours.
"It's overwhelming," said David, who's been working at home and taking time off to care for his daughter.
Betsy Grant can relate. Her son, Kyle, was born with a rare muscular disease called myotubular myopathy. Unable to swallow or breathe on his own, he's been tube-fed his entire life and has relied on a breathing tube since he was 2.
"A cold is frightening, never mind the flu," said Grant. "Sometimes we nearly lost him just from a little bit of mucus."
Kyle, now 20, with brown hair and delicate features, can zip around their Addison farmhouse in a power wheelchair and even plays soccer with the Vermont Chargers, an adaptive sports team. Still, he requires intensive care. He can't, for instance, clear his own airways, which means another person must use a suction device to do it for him.
"Our experience has been a gradual decline of nurses who are willing to come over the years," said Grant. The family is supposed to receive 112 hours a week and has been getting 34, she said.
Grant, a registered nurse, is content to care for her son as her full-time job. But she and her husband, Scott, who works as an IT specialist, are struggling to fill the night shifts, which means they must wake every few hours to help Kyle clear his airways or simply roll over. "We're lucky if we have two nights covered a week," Betsy said.
Adam Poulin is the program administrator at the Children with Special Health Needs program at the Vermont Department of Health. Asked how frequently families are unable to find the care they're authorized to receive, Poulin said he could not say precisely, adding, "I think any instance of that is too much and is a real concern that requires collaboration and partnership with the home health agencies."
Poulin said state agencies regularly hold meetings about individual children, trying to patch together other services, such as respite care, to make up for the lack of nurses.
Home health organizations say they're doing everything they can to recruit employees, given the circumstances.
Nicholas McCardle, division director for Bayada Home Health Care, which serves clients statewide, said that for three years his company has offered "significant hiring bonuses" and brought in nurses from New Jersey and Pennsylvania to supplement its Vermont staff.
Home health nurses typically make around $25 an hour, according to the national job site Glassdoor.
"It's very difficult to find nurses out there that are willing to work in the home health field," added Tim Brownell, executive and clinical director of Addison County Home Health & Hospice, the local VNA. "Throughout the years, people have retired and moved on, and now we have limited resources as far was what we can provide in that area," he continued. "We are constantly looking for new nurses."
Brownell said he doesn't think low pay is the primary problem, although he conceded nurses could "absolutely" make more in a hospital. He thinks it's the home-care setting that can be a challenge. "It's a very stressful environment," he said, noting that the nurses often work alone.
High-tech cases, which involve patients who depend on medical technology, present an even greater challenge. "We can't put any nurse in those situations because it's overwhelming," Brownell said, explaining that he only uses nurses who have past experience working with such patients.
Peterson said the VNA of Chittenden & Grand Isle Counties employs 38 nurses who collectively provide 700 hours of care per week for 16 high-tech clients, at a cost of $1.4 million last year. Most of the nurses work on a per diem basis without benefits. She estimated they fill about 80 percent of clients' hours.
Her organization has "worked very hard to increase our wages," lobbying the legislature each year for higher Medicaid reimbursement rates, Peterson noted. And recently, she continued, the VNA has had more success finding nurses by employing full-time recruiters, running online ads and offering a one-year residency program to attract nursing school graduates.
But home health groups could use more support, Peterson suggested, and she'd like to see the state launch a recruitment campaign.
In the meantime, families continue to pick up the slack.
"The consequence of not having someone alert, ready to take care of the kids, is really dire," said Prine of Vermont Legal Aid. "Part of the problem is we have this expectation that parents can go above and beyond. These parents are going above and beyond night after night, week after week, month after month, year after year, and that is a huge toll on them and their families."
The issue is not just about providing relief for overextended parents. "They are saving Vermont money by keeping these kids home," Prine noted.
Laura Noonan of Shelburne can attest to that. Her daughter Nicole, now 17, contracted cytomegalovirus while in the womb, causing cerebral palsy, epilepsy and a severe intellectual disability. Two years ago, Noonan said, there was a "phase when the VNA just wasn't able to fill our authorized hours."
Nicole made repeated trips to the UVM Medical Center, racking up 64 days in the ICU. "We were fearful that her health was actually on a permanent declining trend," Noonan said. The family struggled to maintain Nicole's care regimen and, out of desperation, considered putting her in an institution, which would have meant sending her out of state.
Then a new VNA case manager began aggressively pushing to get the family more nurses. Today, the family receives nearly all of their authorized 114 hours.
"She hasn't been admitted to the hospital ever since," said Noonan.