It took nine months for Jennifer McLelland and her husband, Justin, of Clovis, Calif., to bring their newborn son home from the hospital after his birth in 2011.

At first, the delay was because their son, James, needed specialized neonatal care for a rare, genetic condition. The disease causes breathing problems, and means James needs the support of a ventilator in order to stay alive. But after five months at Lucile Packard Children’s Hospital Stanford, James was stable, and ready to be discharged to his family.

There was just one problem: The McLellands couldn’t find a nurse to care for James at home. Under the state’s Medi-Cal health insurance program, he’d been approved for 24-hour home nursing. But there were no nurses available to care for James in the small Fresno County town of Caruthers where his family lived at the time.

“He was stuck in a hospital 200 miles from home for no medical reason,” said Jennifer McLelland. “It’s indescribable how hard it is to manage care so far from home. We needed to bring him home, but we also needed to bring him home safely, and we couldn’t.”

The McLelland’s situation isn’t unusual. Across California and the country, families with children with complex medical needs struggle to find qualified nurses to care for them. Like James, many of these children depend on machines to keep them alive, and they require extensive, trained supervision. But historically low pay rates for home health nurses, a lack of pediatric training for in-home situations, and a disjointed system for finding caregivers has left many families without the nursing care their children desperately need and are entitled to, experts said.  

“Every parent of a medically complex child struggles with finding and retaining home nursing care,” said McLelland, who is part of a support network for families like hers. “We hear of families where a parent has to stop working and there’s no compensated parental care, families that are forced into poverty because they can’t maintain a job because of the extreme care needs of their children, families that are forced to move.”

McLelland ultimately found a nurse herself by canvassing for candidates at a local naval base where she lived. The family ended up moving to Clovis, a larger city, to have a better chance of finding nurses, but continues to struggle to find the round-the-clock care their son needs.

A paper in the journal Health Affairs in June outlined challenges facing the home health care system for children nationwide, referring to states’ obligation to provide care to these children through the Medicaid program as an “underfunded mandate.” Medicaid is the national health insurance program for low-income people and those with certain disabilities, which in California is called Medi-Cal.

The report pointed to median Medicaid payments for home health nurses that are well below the prevailing wage for nurses working in a hospital. At the same time, caring for children with complex medical needs is demanding and specialized work, and many nurses don’t receive adequate training or support to do the job, the report authors said. The result is that nurses lack incentives to work with children in their homes, leading to a chronic shortage of home health nurses.

The good news is California may be starting to turn a corner. In July 2018, the state approved a 50 percent pay increase for Medi-Cal home health nurses, raising the rate from between $19 and $45 an hour to between $28 and $68 an hour, depending on the type of nursing provided and experience level. A portion of this hourly rate is absorbed by the home nursing agencies that supply the nurses, so the actual amount they get paid is usually lower.

Meanwhile, California’s Department of Health Care Services recently settled a lawsuit that challenged the state for failing to arrange in-home nursing care for children with special medical needs. As part of the settlement, which took effect Oct. 31, the department agreed to ensure agencies that authorize home nursing care for these children, including California Children’s Services and managed care plans, also take charge of finding them nurses. Until now, these agencies typically gave families a list of home nursing agencies that were often obsolete, and told families to find the nurses themselves, explained Elissa Gershon, an attorney withDisability Rights California, which filed the lawsuit.

Gershon said it’s too soon to tell whether these changes will solve the pediatric home nursing shortfall, but her organization is hopeful.

“I think the state recognized that there was a big problem and they had an obligation to these kids and they weren’t fulfilling it,” she said. “It remains to be seen whether this is the entire fix that we need.”

For the McLellands, the pay increase for nurses seems to be making it easier to find home nursing care for James, who is now 8 years old. For the first time since he was born, the family has been able to secure a nurse who can care for James overnight during the week, allowing his parents to take a break from sleeping in shifts.

However, Jennifer McLelland said the family still struggles to find home nursing care for James after school, during school holidays and on the weekend, even though he is entitled to it through Medi-Cal.

“It is inconceivably hard, but families are absorbing these kinds of care needs because they love their children and the alternative is worse,” she said. “If we weren’t sacrificing sleep and time to keep our son alive at home he would be in a facility and we couldn’t see him.”

Zhanzhi “Mike” Hu, a father of two boys with the rare genetic disease Hunter syndrome, who lives in Alameda County, said he also struggles to find nurses to care for them when they’re not in school or an after-care program. The family resorted to putting up flyers at a local community college to find a caregiver, after several nurses assigned to them through an agency either moved on to other jobs or didn’t have the skills to care for the boys.

Thanks to their own marketing efforts, Hu said the family now has a caregiver they trust, although she’s not a licensed nurse. He worries about other families who haven’t been as lucky.    

“For many other families we’ve talked to, they just don’t have anyone else to go to other than going to grandparents or friends,” he said. “It’s not sustainable.”   

Gershon said Disability Rights California plans to keep monitoring the state’s enforcement of the settlement carefully, and will keep talking to affected families to see if things improve.

“These are families who are really working incredibly hard to keep their kids home,” she said. “They deserve support, because it’s impossible to do this without the right support.”