Overwhelmed by the demands of caregiving, Quette dialed 911 when she found her teenage son downstairs in their kitchen struggling to breathe.
In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs in their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him.
Once his immediate medical needs were addressed, her son didn’t leave the hospital. His grandmother, who was his legal guardian, had died and the teen ultimately became a ward of the state. He continued living inside a St. Louis children’s hospital for what’s commonly called a “social stay.”
Also referred to as hospital boarding or delayed discharge, the practice of keeping children in hospitals “beyond medical necessity” has become a persistent problem — flummoxing officials in Missouri, Illinois, Minnesota, Georgia and beyond — when there’s no safe place to care for the child.
Finding homes for foster kids is difficult across the country. They have spent nights in casino hotels in Nevada and offices in Georgia and Maryland. This problem even has a name: “hoteling.” But add medical needs to the mix, and hospitals become the holding station for some kids.
“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was something that I was not ready for.”
She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. KFF Health News agreed to use only her nickname to protect the safety of her son.
Many children stuck in this limbo have mental health or behavioral issues, while some have chronic physical conditions or disabilities for which they need technology, equipment or other assistance.
“It’s definitely a national problem,” said Elaine Lin, a pediatrician at Boston Children’s Hospital and the chair of the American Academy of Pediatrics’ Section on Home Care. “Every state has different options in terms of where kids can go post-acute care. But in general, there are many of our kids with medical complexity who just don’t have access to the appropriate home nursing to bring them home safely.”
The issue comes with a price tag beyond the toll it takes on kids and families. When a child no longer needs hospital-level care, insurers don’t have to pay for their stay. Some hospitals eat the cost. Others ask the state for reimbursement if the child who is waiting for placement is in state custody.
According to the Missouri Hospital Association, the state’s Department of Social Services reimbursed $16.3 million to 19 hospitals for 9,943 boarding days last year — more than $1,600 a night. But association spokesperson Dave Dillon said that’s a substantial undercount of the problem and that hospitals often aren’t reimbursed for housing children.
Missouri lawmakers have repeatedly introduced bills to try to significantly reduce the number of hospital boarding days each year and eventually end the practice altogether. But this year, the bill died in committee, just as it did last year and the year before. According to a fiscal note attached to the bill, paying for hospital boarding could cost more than $148 million a year in a state that already plans to tap its reserves to fund its upcoming $50.7 billion budget.
“You can’t just discharge a 9-year-old into the street,” Rasnick, with the Missouri Hospital Association, told lawmakers during a March hearing on the bill.
Lin, the Boston-based pediatrician, said a shortage of home health care workers forces some families to keep their children in the hospital, even though they’re well enough to go home.
State Medicaid programs face new pressure from federal cuts in congressional Republicans’ One Big Beautiful Bill Act. Medicaid, which provides health care coverage for those with low incomes or disabilities, is expected to lose nearly $1 trillion in federal funding by 2034, so some states are already threatening to scale back optional home-care programs.
Quette’s son is still in state custody but no longer hospitalized. Illinois officials declined to let the teen share his story with KFF Health News.
His mother said she is still holding on to his brace, bandages, ointment and other medical supplies in her home. “That’s all I have,” Quette said. “That’s the stuff I will never give away.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — an independent source of health policy research, polling and journalism.