The Pelovitz family has struggled to find home care nurses for their daughter who has a rare genetic disease that causes severe seizures and other potentially life threatening symptoms. (Algerina Perna, Baltimore Sun video)
Jill Pelovitz depends on an army of in-home nurses to keep her teenage daughter alive.
Fourteen-year-old Nadiya suffers from a rare genetic disorder that causes life-threatening seizures, breathing problems and other complications. The teenager, who needs help with basic life skills such as dressing and walking, requires constant monitoring in case she has a seizure, especially at night when she is sleeping in their Severn home.
But finding nurses to assist families with disabled children and other relatives at home can be difficult, largely because such nurses aren’t paid enough in Maryland or even as much as in neighboring states, according to the families of the disabled and companies that place nurses. They are pushing to increase how much the nurses are reimbursed under Maryland’s Medicaid program, which covers most of the costs of at-home nursing care for the disabled.
“We are always wondering at what point a nurse is going to go somewhere else where they can make more money,” Pelovitz said.
Most at-home nurses are licensed practical nurses, a designation that doesn’t require a bachelor’s degree. In Maryland, such nurses make significantly less caring for someone in their home than working at a nursing home or hospital — or in some neighboring states. Medicaid covers in-home licensed professional nurses at a rate of $35.20 per hour in Maryland, compared with $46.14 in Delaware and $50 per hour in Washington, according to an analysis by BAYADA Home Health Care, a placement firm that is lobbying to increase the rates in Maryland.
The nurses only get a portion of that money. Medicaid pays the provider or placement agency, which pays the nurses who work for them. Companies such as BAYADA said they can’t pay enough to attract nurses because of the overhead of running their businesses.
As a result, BAYADA currently doesn’t place in-home nurses because it is not cost-effective, but officials said it might under a higher rate.
“With a growing shortage of nurses and increasing opportunities for nurses, I would say they are going to follow the money,” said Dawn Seek, executive director of the Maryland-National Capital Homecare Association, which represents agencies that places nurses.
Cristine Avadikian, a 52-year-old licensed professional nurse, said she works only for clients who pay with private insurance. A single mom who lives in Hagerstown, she said she couldn’t make ends meet from the Medicaid reimbursement and supports an increase. She likes the personalized nature of home care nursing.
“I really enjoy being able to give my patients the one-on-one attention they need,” she said.
So does Amanda Brady. The registered nurse used to drive 45 minutes from her Elkton home to work in Delaware, where she could make more money helping disabled children live with their families.
“I would have loved to work in Maryland, but I can’t because they don’t have the same reimbursement rates,” said Brady, now a nursing director for BAYADA.
Amid lobbying by placement agencies, the Maryland General Assembly voted this year to increase the reimbursement rate for such home nurses by 3 percent, the biggest increase in the past seven years. The new rate of $35.20 an hour took effect July 1, but many advocates and families say that it is nowhere near enough.
“The issue isn't that there has been no movement, it's that the increases have been so small and the cost of living for everyone, the cost of everything, the wages for LPNs in other settings has risen so much faster than Medicaid reimbursements,” said Shannon Grace Gahs, BAYADA’s director of government affairs. “Over time, Medicaid has become really far behind, causing a lack of access to home health care for those children and adults with disabilities who rely on this care to live safely within their communities, with their families.”
Legislation also passed, and was signed by Gov. Larry Hogan, to create a task force to study whether a further increase is needed. A report is due to the General Assembly by Nov. 30.
Increasing the reimbursement rate further could be difficult to justify - particularly in tight budget years, lawmakers and health analysts said.
“You can make the argument that no one makes enough,” said Del. Eric M. Bromwell, a Baltimore County Democrat. “We can always reimburse people more.”
Increased spending in one area might very well mean cutting in another. Nurses would have to show it could save in other ways, such as by keeping people out of the hospital, said Jonathan P. Weiner, a health policy and management professor at Johns Hopkins University Bloomberg School of Public Health.
“There is never enough money to provide enough resources,” Weiner said. “If they get that raise, it has to be proposed in a way to make care more efficient and save money.”
Some advocates and parents hope the legislative task force study will open the door for further funding.
BAYADA has proposed raising the amount at-nurses make from $35.20 an hour to $44. The company estimates doing this would cost Medicaid about $26 million a year, of which Maryland would pay half.
“In many ways it is kicking the can down the road,” said David Totaro, BAYADA’s chief government affairs officer. “However, if this is the first step that will make lawmakers recognize the need …because it is an important source of information, then we fully support it.”
He noted that when families can’t find needed nursing help they may have to take time off work or perhaps stay up all night to care for a relative and go to work exhausted the next day. Some end up leaving the workforce because of the burden.
“What happens typically is they have to become the nurse,” Totaro said.
She used at-home nurses to help care for her daughter Channing until the 2½-year-old died last spring. Doctors never officially diagnosed Channing, but her illness caused severe breathing difficulties, requiring the use of a ventilator and tracheostomy tube to help her breathe. She needed 24-hour care.
“Some nurses didn’t show and we would have to stay up all night,” Matthews said “It was just something we had to do.”
Matthews recently attended a town hall about the pay of home nurses because she believes they are underpaid and overworked. She finds it therapeutic to try to help improve the care disabled children receive.
The issue is not only a financial burden and inconvenience for families, but the shortage of nurses can put patients at risk, families and advocates said.
Nurses are better trained than families to spot medical problems before they worsen, which keeps people out of the hospital, where care is more expensive, advocates say. At-home nurses perform critical tasks such as cleaning feeding tubes so patients don’t choke, administering medications and changing catheters so people don’t get infections. They monitor seizures and make sure people on ventilators have clear air passageways.
Studies have found that disabled people have a better quality of life when they are cared for at home and not in the hospital, Totaro said.
Under a state waiver, Maryland hospitals are under order to cut costs and move more care to outside entities such as nursing homes, outpatient ambulatory centers or patients’ homes.
But the nursing shortage is likely to get worse as competition increases for nurses. The American Nurses Association estimates the country will need more than 1 million new registered nurses by 2020.
Dyllis Minang, who runs the residential placement agency Optimal Health Care Inc. in Hagerstown, said she has three families waiting for nursing care, but she doesn’t have enough nurses to serve them. It is hard to recruit nurses under the current pay, she said.
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When Pelovitz began looking for a nurse to care for her daughter, she called multiple agencies, she said. Some never returned calls, while others could not guarantee they could provide anyone. Others said they could only offer part-time care.
One nurse Pelovitz hired was scared of the family dog. Another found a better-paying job. Once a nurse called out sick while the family was on vacation at the beach and they had to return home because they couldn’t find anyone to fill in.
“You never know what is going to happen from day to day,” she said.
She said having some nursing help has been better than when she was doing most of it herself. She is able to work again, part time for a nonprofit. And she is sleeping better at night. Before bringing in nurses, she used to constantly worry something would happen to her daughter while she was asleep.
Pelovitz hopes state officials will come to understand the plight that she and other families face and increase Medicaid reimbursements for at-home nurses.