Finding nurses to care for medically fragile children at home has historically been difficult. But since the start of the COVID-19 pandemic, the problem has worsened dramatically, according to parents of children with disabilities and home health agencies. The pandemic set off a surge in demand for nurses at hospitals, clinics, and other health care facilities, and widened the compensation gap between these and lower-paid home nursing jobs. This pulled nurses away from home care. At the same time, large numbers of nurses left the profession—many due to health concerns, retirement, and burnout—shrinking the overall workforce. As a result, fulfilling requests for home nurses has become close to impossible, those in the field said. That’s especially true for the more than 1 in 4 California children with special health care needs who, like Mila, are insured through the state’s public health insurance program, Medi-Cal, which typically pays nurses less than private insurance.
Without home nursing support, families can struggle to care for medically fragile children. Some children, like Mila, stay in the hospital longer than necessary or are sent to pediatric nursing homes, said Jerin Johnson with the nursing agency Aveanna. Parents intent on having their children at home often quit work to become full-time caregivers, placing economic strain on the family. They go without sleep because children who depend on medical equipment to stay alive often require overnight monitoring. To get a break, parents may turn to relatives or babysitters without medical training.
Children enrolled in Medi-Cal are entitled by law to receive the nursing hours approved for them. The same is true for children in the California Children’s Services (CCS) program, a state insurance program for children with specific chronic conditions who require intensive levels of care.
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