Laurie Baturin, a substitute teacher in Hagerstown, Md., stays up two nights a week, watching to make sure her son stays stable till morning.
Alex, 16, a quadriplegic with severe cerebral palsy, has been receiving home nursing care since he was 3. He has a feeding tube and needs to be catheterized every four hours and constantly monitored for seizures. He is qualified through Medicaid to receive nursing care seven nights a week and on school days.
But the service provider that Baturin uses doesn’t have enough nurses to fill all the shifts, so, like many parents, she must fill in the gaps.
“I’m totally exhausted,” said Baturin, a single mother who also cares for a 7-month-old nephew with a brain injury. “I’m 55 years old. My body hurts like it never has before. I’m just wiped out . . . and God forbid I should sleep through a seizure — that could be devastating.”
Forty years ago, children with severe disabilities such as Alex’s would likely have been institutionalized. But these days long-term-care patients live at home with their families as much as possible, which is considered better practice and costs less overall.
It is already hard to navigate the bureaucratic hoops to get home nursing care approved, families say. But when they do get approved, they are often told by Maryland providers that no nurses are available to come to their houses. The story is similar for parents trying to find home nurses in Virginia.
The reason lies in a stark state-by-state discrepancy in the pay in-home nurses receive through Medicaid. Maryland and Virginia have set reimbursement rates significantly lower than surrounding jurisdictions. The Maryland rate is around $35 per hour and the Virginia rate ranges from a little more than $20 per hour to a little more than $30 per hour. Nurses doing the same work earn $50 per hour in the District, $44 per hour in Pennsylvania, $46 per hour in Delaware and $44 per hour in West Virginia.
As a result, licensed practical nurses are finding more lucrative positions out of state or at hospitals or other care institutions that pay more, leaving many homebound Medicaid patients without services. Since the reimbursement rate has not increased as quickly as the cost of living, the problem has been getting steadily worse, say advocates of increasing rates.
Seventeen percent of hours that have been prescribed for Maryland residents are not filled, affecting several hundred people every year, according to Shannon Gahs, who is the Maryland and Delaware director of government affairs for Bayada Home Health Care, a home-nursing provider. In some counties, the portion is higher. By comparison, just 7 percent of Delaware hours are not filled.
To fill in the missing time, family members often step forward, adding nursing care to their jobs and household duties. “They’re not skilled nurses. They do a really good job, but they should be able to be moms and dads and spouses,” Gah said.
Care providers and parents have had town hall meetings and lobbied the Maryland legislature, pushing for a 25 percent rate raise, which would make it more competitive with surrounding jurisdictions. A task force this year requested $10.5 million for the rate increase, plus additional funds to create education and training programs to improve the quality of licensed practical nursing services. But they say it is unclear when a decision might be made.
“It’s all at the discretion of the governor’s office,” said Dawn Seek, executive director of the Maryland-National Capital Home Care Association. “We have to probably wait until the new legislative session starts” in January. “They’re taking it seriously because . . . it’s a serious public health concern.”
An email to Mat Palmer, deputy legislative officer for the governor’s office, was not returned.
In Virginia, “there are some parts of the state where you can’t even receive this care,” said Marcie Tetterton, executive director of the Virginia Association for Home Care and Hospice. “Availability is going down because these nurses in essence are taking huge pay cuts to do this care for these kids.”
Virginia advocates pushing for rate increases are hoping the budget that the governor releases next week will include a 10 percent increase. “It sounds like a lot, but a 10 percent increase is not going to be enough to get it where it should be,” Tetterton said, adding, “We’ve been talking about this issue for at least 15 years.”
The pay differential is hard on local nurses as well, said Mandy Brady, a home-care nurse. When she moved from Delaware to Maryland in 2011, she wanted to work where she lived, but it wasn’t affordable for her.
“My commute with traffic can be upwards of 45 minutes,” she said. “I’d love to work in Maryland and help my community and help the people in my neighborhood, but the prices . . . don’t allow it for me.”
Even when a patient is able to get all the prescribed hours, it feels shaky, said Jill Pelovitz. When her daughter Nadiya, who is 14, got approved for home nursing care, she called eight to 10 agencies looking for nurses to care for her in their home in Severn, Md. “Several didn’t call back. One said she couldn’t guarantee staff.”
In over four months, Pelovitz trained 16 nurses to care for Nadiya, who has a rare genetic disorder. “Some would not come back after the first time, or they would leave after a few days, or call out every weekend.”
Weekends and nights are especially hard to fill. On the nights when they don’t have coverage, Kelly Meissner and her husband of Columbia, Md., must stay up to monitor their daughter Ashley, 24, who has severe disabilities and requires round-the-clock care. They sleep near her, set alarms to go off five or six times during the night, and get up to check her vital signs and administer medications and other treatments, Meissner said.
There are so few nurses available that sometimes they have to put up with subpar ones.
“We as parents have to decide, if there’s a nurse who’s asleep in the chair, do I call and report and fire that person ?” Meissner said. “It can be weeks and even years before we get that slot filled.”