California neglects its private duty nurses and fails its sick children 

Leah Hernandez is a 9-month-old baby living with bronchopulmonary dysplasia, a chronic lung disease affecting newborns. 

Born premature at 29 weeks, Leah depends on a gastrostomy tube for nutrition, a tracheostomy to maintain her airway and a ventilator for breathing support. She and her family live in Sacramento and rely on private duty nursing, an in-home healthcare service for medically fragile patients. 

A lack of available nurses delayed Leah’s return home by several months, because of Medi-Cal’s lack of investment in private duty nursing. 

Instead of coming home, Leah was discharged to a pediatric nursing home in the Bay Area — more than two hours away from her family — where she remained for several months. She had to be readmitted to the hospital several times, costing Medi-Cal thousands of dollars in unnecessary costs. 

Leah’s story is unfortunately all too common. As an in-home healthcare provider that has operated in California for more than 30 years, we care for some of the state’s most medically fragile patients. Most of these patients are children who depend on ventilators, feeding tubes, seizure management and around-the-clock care to survive. 

Pediatric private duty nursing for them is not optional, supplemental or nice to have. It is a legally required service under Medicaid, designed to keep vulnerable patients safe at home and out of expensive hospitals. 

And yet, while California has continued to invest in Medi-Cal, the state has not raised reimbursement rates for private duty nursing in nearly a decade. During that time, the cost of living has soared, wages in other nursing fields have increased and our responsibilities have grown more complex. 

Many nurses have been forced to leave the field altogether, not because they want to abandon the families who rely on them nursing for care, but because the state’s reimbursement structure makes it very difficult to do in-home nursing care. 

Families like Leah’s wait months, sometimes years, for nursing care that they’re legally entitled to receive. Medically fragile children end up being hospitalized repeatedly for preventable complications, simply because there are not enough nurses to keep them safe at home. Hospital readmissions are up to 1,300 times more expensive than offering properly compensated care in the home setting. 

Right now, there are hundreds of sick children stuck in the hospitals waiting to go home. Many of us cannot imagine the reality of being separated from our kids, let alone when they are sick. 

We need our lawmakers to act and honor their oath to protect and serve all of California’s children. Gov. Gavin Newsom should do the right thing and allocate funding for private duty nursing in the state budget. 

By investing in private duty nursing services, California is expected to save more than $175 million dollars a year, by reducing unnecessary hospital stays and promoting consistent homecare for medically fragile patients.

California speaks proudly about its values of equity, compassion and caring for the most vulnerable. But right now, our state’s policymakers are failing the very people who embody that description. 

A decade of neglect is long enough. Now is the time to honor California’s commitments and invest in private duty nursing. Our patients’ lives depend on it.