He sleeps in shifts to keep his son alive. And hope a nurse shows up.

Many had pinned their hopes on the Biden administration’s infrastructure plan, which would provide $400 billion to improve home and community-based care. But as the president and Republicans depend on the size and scope of the proposal, it is unclear whether that part will survive.

Meanwhile, the parents, a constant burden, continue to grow, alone.

A nurse caring for a medically vulnerable child at home has the same responsibilities that she does in a hospital but has no medical backup in an emergency. It’s a high-wire act, and experts say prevailing wages don’t reflect its hardship.

Federal guidelines allow state Medicaid programs to cover in-home care for eligible children regardless of their families’ incomes, as the cost of round-the-clock nursing would bankrupt almost anyone. But states typically pay home care nurses at much lower rates than similar care in a hospital or other medical center.

“They effectively set a benchmark of workers’ compensation for those who competitively disadvantage the sector,” said Roger Noyce, a spokesman for the Home Care Association of New York State. In return, state-certified home health agencies, which provide families with nurses, pay meager wages and rarely provide health insurance or other benefits to the nurses they employ.

So, although home care is more appropriate for medically vulnerable children, hospitals receive about half of Medicaid spending on these cases, compared with 2 percent for home care, studies show.

And COVID-19 created competitive demands for nursing that further reduced the home care workforce. Growing from the pandemic, Northwell Health, the state’s largest health care provider, hired 40 percent more nurses in 2020 than a year ago and contracted an additional 1,000 temporary nurses after the local hiring pool was exhausted.

Robert Pacella, chief executive of Caring Hands Home Care, the agency that worked on Henry’s case, noted the change in January as nurses began to lose opportunities to take shifts and new applicants dwindled.

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