January 11, 2018

400 days in the hospital—after being cleared to leave: How the home nursing crisis is stranding children

Daily Briefing

    A lack of infrastructure to provide and fund home nursing care means that many children with complex medical conditions stay in the hospital even after they've been cleared for discharge—and when children do come home, parents face tough financial and personal decisions to ensure their child receives proper care absent a professional home nurse, Caroline Chen reports for Bloomberg.

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    A home nurse shortage

    For the vast majority of cases, home nursing is less costly than hospital care, Chen reports. For instance, keeping one child in Chicago in the hospital nine months past discharge generated a $513,000 bill—about three times what 18 hours of daily nursing care would have cost, Chen reports.

    However, private insurance rarely covers home nursing, and Medicaid reimbursements are extremely low, which means few professional nurses are willing to provide care—and few parents can afford the services.

    States set Medicaid reimbursement rates and those payments vary based on a nurse's skill level. An RN in Massachusetts can earn about $30 an hour for home care, while the same care costs $52 an hour at Boston Children's Hospital. And other home nursing professionals make far less—Aimee Snyder, a former EMT who now works in home nursing said for the last two years, said she has made only $10 per hour, the same salary she made when she previously worked as a barista. "I'm going from making coffee to watching kids who need 24-hour care," Snyder said.

    Barriers to care

    Although Medicaid provides coverage for eligible children with medically complex problems, families often face long waits for home nursing care in the face of home nurse shortages and poor program oversight, according to experts.

    Under Medicaid's Early and Periodic Screening, Diagnostic, and Treatment benefit, Medicaid must cover "necessary health care, diagnostic services, treatment, and other measures ... to correct or ameliorate defects and physical and mental illnesses and conditions," Chen writes. That benefit requires states "not just cover the services but also to help facilitate the receipt of services," according to Mary Beth Musumeci, an associate director at the Kaiser Family Foundation.

    In addition, children should be protected under states' Medicaid managed care contacts, Chen reports. Under the arrangements, states give plans a lump sum, and the plans decide how to spend it.

    But families still face considerable delays because of home nursing shortages—which according to Jessica Schubel, a senior policy analyst at the Center on Budget & Policy Priorities, constitutes "a compliance issue." She added, "The state needs to be looking into why they're not getting all the services they should get."

    Jennifer Moore, executive director of the Institute for Medicaid Innovation, added that the issue stems from a lack of funding and oversight. "State Medicaid offices are underfunded and have inadequate staff. Accountability is very low," Moore said.

    Meanwhile, while families whose incomes are above the Medicaid coverage threshold can apply for a waiver that allows them to enroll a child with severe needs in Medicaid, the wait for coverage can similarly take years, Chen reports. For instance, Lorena DeCarlo and her husband applied for a so-called Katie Beckett waiver to enroll their son in Medicaid coverage in Connecticut. At the time of enrollment, they faced a six-to-eight-year wait for Medicaid coverage, Chen reports. The family was 147th in line.

    How families make do

    Without adequate coverage and access to home nursing professionals, many children remain hospitalized for far longer than medically needed, Chen reports.

    For instance, Sheltaya Williams' 17-month-old daughter remained in the hospital nine months after she was eligible for discharge. At the time of publishing, Chen writes, Williams was still searching for the fourth of four nurses she needs to bring her daughter home. "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," Williams said.

    Families who are able to bring their children home often must sacrifice work and take on the role of nurse for their child. For instance, according to Chen, DeCarlo left her job to care for her son, "who was born in December 2015 with brain and heart defects as well as paralyzed vocal cords." Boston Children's Hospital trained both DeCarlo and her husband on how to meet their son's needs, and for more than a year she has slept next to her son's bed, alert for alarms that his trach tube has clogged. "The first time we finished changing his trach, I had tears in my eyes," DeCarlo said. Reflecting on the fear of making a mistake, she said, "I'm never going to sleep a day in my life."

    In another instance, a mother in Pennsylvania lost her job because she had to take off days to care for her child with a rare muscle disorder—the mother couldn't find a nurse in her area. A father in South Carolina said he and his wife were able to remain employed only because their 16-year-old spends hours caring for her younger brother, who has cerebral palsy and severe epilepsy. Facing financial hardship, a couple in Chicago had to sell their house.

    What can be done?

    While raising wages would help boost supply, finding funds could prove difficult, Chen reports. Home care is less costly than hospital care in almost all cases, but boosting home nursing rates could increase overall state expenditures, Chen reports.  

    There have been a few state and grassroots efforts to boost Medicaid reimbursement rates: A California bill that would have raised rates 20% didn't reach a floor vote. In Massachusetts, a parent coalition lobbied the state's Medicaid administrator to raise Medicaid reimbursement four times over the past year, though the rates remain below what parents say is needed to attract home nurses and keep them in the profession.

    Ultimately, however, parents whose children require home nursing care are often too busy tending to them to advocate for their situation, Chen writes. As Carrie Chapman, an attorney at the Legal Council for Health Justice representing a group of parents in a Chicago lawsuit, said, "The state is willing to prey on parents. … 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" (Chen, Bloomberg, 1/8).

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