NYT examines limited options for disabled children who reach age 18

May 19 2008

The New York Times on Wednesday examined how as "medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and 'medically fragile.'"

The Times profiled Sam Stabiner, who at the age of 15 became ill with what physicians now believe was a rare form of meningitis and is now considered "medically fragile." The Times examines efforts by Stabiner's parents to find institutional care for their son after he turned 18 years old.

According to HHS, each year, about 500,000 youths with special health care needs because of conditions such as congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell anemia reach age 18. Although many "will transition to adulthood smoothly ... the most seriously disabled" have "limited" options for care as their parents grow older, "making intensive home care more difficult, if it was even possible to begin with," the Times reports. As a result, about 8,000 people younger than age 30 are among the 1.4 million nursing home residents in the U.S., according to CMS. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto, said, "The people we are talking about did not exist 50 years ago," adding, "We simply don't have a model for these children."

Edwin Simpser -- chief medical officer at St. Mary's Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York state -- said, "This is a problem that has gone largely unrecognized and is only going to grow." According to Simpser, over the next five years, about 200 children will age-out of St. Mary's program. He added, "We could be talking about 70% of those kids ending up in a nursing home if we don't find an alternative" (Santora, New York Times, 5/14).