Doctors Told Them to Take Their Babies Home. They Can't

Inside the struggle to find and pay for at-home care for kids with extreme heath-care needs
By Kate Seamons,  Newser Staff
Posted Jan 9, 2018 4:09 PM CST
Stock photo of a child in a hospital.   (Getty Images)

(Newser)

Sheltaya Williams' daughter was admitted to the Children's Hospital of Pittsburgh on Aug. 22 and found to have clots that demanded surgery. The 6-week-old, who was born with heart defects, was left with a tracheostomy and on a ventilator. In March, doctors decided little Brooklyn Mallard could go home. But as Caroline Chen reports for Bloomberg, she's now 17 months old and still stuck in the hospital. That's because Brooklyn will require home nursing care—a regiment of four nurses, in her case—and Williams just can't find them. It boils down to money. As Chen explains, "there is no coherent system to provide and pay for home-care nurses" for kids with extreme health-care needs. Medicaid doesn't guarantee full coverage for these cases (and pays wages so low it's not attractive to many nurses).

Private insurance rarely covers it, and children from families whose income levels exclude them from Medicaid find themselves stuck on years-long waiting lists for special coverage. There's a huge cost—to the families, and to our health-care system. Chen shares the cases of other families who have resorted to giving up jobs, getting trained, and providing the care themselves, a situation that's fraught with stress and short on sleep. For Williams, a single mom and senior airman in the Air National Guard, that's not an option. Keeping these children in the hospital is a high-cost affair; Chen cites a $513,000 bill for one child's unnecessary 9-month stay; had at-home nursing care been accessible, 18 hours a day of it would have cost about a third of that. Chen explains why a fix to the problem is tough, and shares the stories of how other families are coping, in her full piece. (Read more health care costs stories.)

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