Brooklyn Mallard, 17 months old, spent the holidays surrounded by her Christmas gifts in a Pittsburgh hospital bed. She should have been home. Her doctors cleared her to leave the hospital last March.
In Fairfield, Conn., Lorena DeCarlo left her job to get her 9-month-old son Lucas out of the hospital, learning how to change the breathing tube that keeps him alive.
Katie Lawrence and her husband waited months before they were able to take their 4-month-old Jaxon out of a Naperville, Ill., facility called Almost Home, but only after Katie quit her job and the couple shelved plans to buy a house.
The stories of these three children share one similarity: The U.S. health-care system has failed them in spectacular fashion even as it has put their parents under severe emotional and financial strain. All for the lack of home-care nurses.
It’s a system that penalizes society’s most vulnerable, and it serves no one. Parents want their children home, hospitals need the beds for more urgent cases, and insurance companies recoil at footing enormous hospital bills. Yet the nation’s most medically-in-need children are often trapped in wards or endure repeated trips in and out of hospitals, all because there is no coherent system to provide and pay for home-care nurses, who typically earn far less than their counterparts in hospitals.
Lost amid the Trump administration’s drive to dismantle the Affordable Care Act—and the uncertain future of the government Children’s Health Insurance Program (CHIP)—is the ongoing plight of children stuck in hospital beds long beyond what’s medically necessary. Unlike the elderly, for whom a certain level of health care is guaranteed under Medicare, children in the U.S. have no overarching protections. While children with medically complex problems from the poorest families receive some coverage for home nursing through federally funded Medicaid, other lower-income and middle-income families can wait years to get their child approved for such coverage. Most private insurance doesn’t cover nursing care at all.
“We have a basic problem in our country in that we don’t have a national commitment to children’s health care,” says Nora Wells, executive director of advocacy organization Family Voices.
These cases are rare—only about 500,000 children in the U.S., or less than 1 percent, have severe health-care needs—but they require a substantial amount of funding. A 2014 study found that this group receives from 15 percent to 33 percent of child health-care spending. The problem is that the system doesn’t have a way to taper children off expensive hospital care once they are out of immediate danger and deemed ready for discharge. So they linger in high-priced hospital beds, consuming more health-care dollars than necessary.
It’s impossible to put a dollar figure on the financial toll of keeping children in the hospital. But evidence suggests the cost is steep. A $513,000 bill resulted from a nine-month hospital stay past one child’s planned discharge date in a Chicago case last year. That was about three times the cost of going home with 18 hours of daily nursing care.
Parents, exhausted and stymied as they navigate the health-care maze, often find that their only recourse is to cut back on their own employment to bring their children home and take on the job of nursing themselves. Otherwise, their children may sit in the hospital indefinitely.
“These are some of the most vulnerable families in the country, and they’re invisible,” says Wells.
Sheltaya Williams, 22, knows what invisible feels like. Her daughter, Brooklyn Mallard, was born with multiple heart defects. At her 6-week checkup in August 2016, Brooklyn’s cardiologist heard fluid in her lungs and instructed Williams to bring her to the hospital for what was supposed to be a few days of observation. But once admitted to the Children’s Hospital of Pittsburgh of UPMC, doctors found clots cutting off blood flow to Brooklyn’s intestines and rushed her into three rounds of surgery. She was given a tracheostomy and a ventilator to support her lungs, and another tube to her stomach, delivering nutrients.
The hospital staff warned Williams to prepare for the worst, but Brooklyn rallied. “After her third surgery she woke up with a smile that said, ‘I’m not going anywhere,’” recalls Williams. Brooklyn has learned to communicate in burbles over the trach tube in her throat, flapping her hands to greet visitors. But, nine months after doctors first gave her the green light to leave, Brooklyn is still confined to her hospital bed.
Home nursing is almost always cheaper than hospital care. But private insurance rarely covers it, and Medicaid pays very little. That leaves few professional nurses willing to work for such low wages. Little wonder, then, that Williams, a senior airman in the Air National Guard and a single mother, has been unable to line up the four nurses she would need to get Brooklyn home.
Medicaid reimbursement rates are set by each state and vary based on a nurse’s skill level. In Massachusetts, registered nurses earn about $30 an hour for home care, compared with $52 at Boston Children’s Hospital. Parents of one baby in Peoria, Ill., had a nurse back out after she discovered her home-care pay would be $11 per hour less that what she got in a nursing home, according to a lawsuit filed on the baby’s behalf.
Aimee Snyder, a former emergency medical technician, moved from Florida to South Carolina two years ago following her husband’s job. Upon arriving in Charleston, she worked as a café barista while searching for a job in her field. Then she stumbled on an ad for home nursing. “I totally fell in love with the work,” she said. “The kids are incredible, and it’s great to become part of their family.”
But the pay was abysmal—$9 an hour. Even her barista job paid more: $10 an hour, plus tips. “I’m going from making coffee to watching kids who need 24-hour care,” says Snyder. She complained to the agency, which eventually matched her barista pay but hasn’t raised her wages in two years.
In Pittsburgh, the shortage is acute. The Children’s Hospital of Pittsburgh has a list of about 200 nursing agencies that it contacts to help parents find nurses, according to Chief Nursing Officer Diane Hupp. Williams has resorted to posting pleas for nurses on Facebook. Other than that, there’s little that she or the hospital can do.
“I want to be able to wake up and see my baby, to not have to get into the car and drive to see my daughter,” says Williams. “We’ve been sitting here waiting and waiting.”
Williams doesn’t have the choice of quitting her job to care for Brooklyn. She’s the family’s sole breadwinner and has a younger daughter at home. But other parents make that difficult choice every day, and critics argue that’s exactly what state agencies, strapped for funds, are counting on.
“The state is willing to prey on parents,” says Carrie Chapman, an attorney at the Legal Council for Health Justice representing a group of parents in a Chicago lawsuit. “They know that parents will move heaven and earth and kill themselves to keep their kids at home—whether that’s bankrupting yourself, quitting your job, or impoverishing yourself for the rest of your life.”
Chapman isn’t exaggerating. Bloomberg News interviewed more than a dozen parents from Washington to Pennsylvania to Massachusetts who have left jobs to bring home their children. Some parents split the night shift and can’t remember the last time they slept in the same bed. Others recall going days without sleeping or showering after a nurse quit.
A mother in Pennsylvania lost her job because she kept taking days off when she couldn’t get a nurse to watch her 3-year-old, who suffers from a rare muscle disorder. A father in Rockhill, S.C., says the only reason he and his wife have managed to stay employed at all is because their 16-year-old daughter spends hours caring for her younger brother, who has cerebral palsy and severe epilepsy. One couple in Chicago had to sell their house to make ends meet.
Few of these parents have medical training, yet almost all fight past their fears to learn what it takes to unclog tubes, administer medication, respond to seizures, and change dressings.
Katie Lawrence, mother of Jaxon, now 13 months old, counts herself lucky to have some of her son’s nursing hours covered. Nine months after quitting her job, she finally returned to work, but says her situation remains precarious.
“Even when you get your child home, you have this ongoing fear that if a nurse leaves, he’ll have to go back [to the hospital] or you’ll lose your job,” she says.
Parents aren’t supposed to be stranded like this, say health policy experts. At least on paper, Medicaid has broad legal requirements for health coverage for children. A federal law on the books since 1967 requires Medicaid to cover children under age 21 for “necessary health care, diagnostic services, treatment, and other measures … to correct or ameliorate defects and physical and mental illnesses and conditions.” The provision, called the Early and Periodic Screening, Diagnostic and Treatment benefit, also calls for the state to “not just cover the services but also to help facilitate the receipt of services,” says Mary Beth Musumeci, an associate director at the Kaiser Family Foundation, a nonprofit health policy analysis organization.
Children should also be protected by contracts between the states and insurance companies that provide so-called managed care plans, in which the state pays a lump sum per patient and the insurer figures out how best to spend it. Those Medicaid plans are supposed to make sure that there are adequate numbers of providers, says Jessica Schubel, a senior policy analyst at the Center on Budget & Policy Priorities.
If children are deemed eligible for home nursing care and aren’t able to find nurses, “that’s a compliance issue,” says Schubel. “The state needs to be looking into why they’re not getting all the services they should get.”
The problem is a lack of both funding and oversight, says Jennifer Moore, executive director of the Institute for Medicaid Innovation: “State Medicaid offices are underfunded and have inadequate staff. Accountability is very low.”
There are even fewer guarantees for middle-class families whose incomes put them above the threshold for Medicaid coverage, such as the DeCarlos. Their son, Lucas, was born in December 2015 with brain and heart defects as well as paralyzed vocal cords. Private insurance through Lorena DeCarlo’s employer would cover only 70 eight-hour blocks of nursing care a year. While that may sound like a lot, Lucas needs round-the-clock care and would burn through that allotment in about a month.
DeCarlo and her husband signed up for a so-called Katie Beckett waiver, a mechanism that was set up to allow parents above the Medicaid income threshold to enroll a child with severe needs in the federal program. The waiver, created in 1982 with the backing of then President Ronald Reagan, was named for a three year-old girl who was stuck in the hospital because Medicaid wouldn’t pay for home care. When they enrolled in Connecticut, the DeCarlos were told they were 147th in line—giving them about a six- to eight-year wait for home nursing coverage.
The DeCarlos decided instead to care for their baby on their own. Lorena left her job, and both parents were trained by the staff at the Boston Children’s Hospital. For more than a year, Lorena has slept by the side of Lucas’s bed, with one ear open for the alarms that sound when his trach tube clogs.
“The first time we finished changing his trach, I had tears in my eyes,” Lorena says. Terrified of making a mistake and endangering Lucas’s life, she thought, “I’m never going to sleep a day in my life.”
Raising home-care nursing wages would be one way to attract more workers to the job, but finding the money would be a challenge. While on an individual basis it almost always makes more financial sense for a child to be cared for at home instead of in a hospital, raising home-nursing rates could increase a state’s overall expenditure, particularly if all the parents currently operating as nurses were suddenly free to return to work. And at a time when continued federal funding is in doubt for CHIP, which provides coverage for 9 million children, securing government dollars to pay for higher wages would seem a steep uphill battle.
State and grassroots efforts to increase Medicaid reimbursement rates have so far met with mixed results. In California, a 2016 bill that would have increased nurses’ pay by 20 percent in some counties failed to get to the floor for a vote. In Massachusetts, a parent coalition successfully lobbied MassHealth, the state’s Medicaid administrator, to raise nurses’ wages four times over the past year, after reimbursement had remained flat for a decade. But even those gains left wages below what parents say is necessary to attract and retain home nurses.
Most parents, though, are too busy just getting through another day to engage in much activism. That’s the case for Sheltaya Williams, who is still searching but remains one nurse short of the four she’ll need to bring Brooklyn home.
“Brooklyn’s a fighter. She shows me ‘Mommy, I’m not going anywhere. Don’t give up,’” says Williams. Even so, it’s a long slog. “You see all these other families going home, and you think, I’m still here, eating the same food in the cafeteria for 400 days.”
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