California Is Failing Its Private Duty Nurses — and Sick Children Are Paying the Price

Sacramento, CA — Leah Hernandez should have gone home shortly after leaving the neonatal intensive care unit. Instead, she spent months separated from her family, shuttled between hospitals and a pediatric nursing facility hours away — not because her parents weren’t ready, but because California couldn’t provide the nursing care she legally deserved.

Leah, now 9 months old, was born at just 29 weeks and lives with bronchopulmonary dysplasia, a chronic lung disease common among premature infants. She relies on a ventilator to breathe, a tracheostomy to keep her airway open, and a feeding tube for nutrition. Like many medically fragile children, she requires private duty nursing — around-the-clock, in-home care that allows children with complex medical needs to live safely at home.

But because California has not kept pace with private duty nursing reimbursement through Medi-Cal, according to industry advocates, Leah couldn’t return home. A shortage of available nurses forced her discharge to a pediatric nursing home in the Bay Area, more than two hours from her family. During that time, she was repeatedly readmitted to the hospital — an outcome that was not only traumatic, but far more expensive for taxpayers.

A legally required service left behind

Leah’s story is not an outlier. It reflects a systemic problem that has been building for years.

Private duty nursing is not a luxury. Under Medicaid, it is a legally required benefit designed to keep medically fragile patients out of hospitals and in their homes. In California, the majority of patients who rely on this care are children — many dependent on ventilators, feeding tubes, seizure management, and continuous monitoring to survive.

Yet despite continued investment in Medi-Cal overall, reimbursement rates for private duty nursing have remained largely stagnant for years, according to industry groups and providers. During that same period, the cost of living has surged, wages in other nursing settings have climbed, and the complexity of care has increased.

The result is predictable. Nurses are leaving private duty nursing, not because they want to abandon vulnerable families, but because the state’s reimbursement structure makes it nearly impossible to stay.

The cost of inaction

Families are paying the price. Parents wait months — sometimes years — for nursing coverage they are legally entitled to receive. Children remain hospitalized longer than medically necessary or cycle back into emergency rooms for preventable complications.

The financial consequences are just as stark. Hospital readmissions can cost many times more than properly compensated in-home care, according to health care cost analyses and industry estimates. Advocates say hundreds of children across California remain hospitalized despite being medically cleared to go home, largely because private duty nurses are unavailable.

Beyond the dollars, the human toll is impossible to ignore. Few experiences are more painful than being separated from a sick child — especially when that separation could have been avoided.

A clear path forward

State leaders have an opportunity to change this trajectory. Advocates estimate that adequately funding private duty nursing could save the state hundreds of millions of dollars annually by reducing unnecessary hospital stays and stabilizing home-based care for medically fragile patients.

Gov. Gavin Newsom and state lawmakers routinely speak about equity, compassion, and protecting the most vulnerable. This is a moment to put those values into action by including meaningful funding for private duty nursing in the state budget.

A decade of neglect has already done enough damage. California’s sickest children — and the nurses who care for them — cannot afford to wait any longer.