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 vie over the proposal’s size and scope, it’s unclear whether that part will survive.

Parents, meanwhile, continue to shoulder an unrelenting burden, increasingly alone.

The Pandemic Deepens a Pay Gap

A nurse caring for a medically fragile child at home has the same responsibilities he or she would in a hospital but no medical backup in case of emergency. It’s a high-wire act, and experts say that prevailing wages don’t reflect its difficulty.

Federal guidelines permit state Medicaid programs to cover in-home care for eligible children regardless of their families’ income, since the price of round-the-clock nursing would bankrupt almost anyone. But states generally pay home care nurses at much lower rates than they would for equivalent care in a hospital or other medical center.

“They effectively establish a benchmark of workers’ compensation that competitively disadvantages this field,” said Roger Noyes, a spokesman for the Home Care Association of New York State. In turn, state-certified home health agencies that provide families with nurses pay meager salaries and seldom offer health insurance or other benefits to the nurses they employ.

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

And Covid-19 generated competing demands for nursing that further diminished the home care work force. Surging with the pandemic, the state’s largest health care provider, Northwell Health, hired 40 percent more nurses in 2020 than the year prior and contracted with 1,000 additional temporary nurses once the local hiring pool was exhausted.

Robert Pacella, the chief executive of Caring Hands Home Care, the agency that staffs Henry’s case, noticed the change in January as nurses began declining opportunities to pick up shifts and new applicants dwindled.