When many young adults turn 18 years old, they are looking forward to an exciting future that includes college or a new job. But the approximately 500,000 young people who require special medical attention and suffer from diseases like cystic fibrosis, diabetes, congenital heart disease or severe disabilities due to injuries are facing a dilemma that didn’t exist a generation ago. Once they turn 18, they have nowhere to go.

Due to medical advances, many of the children who would not have survived a generation ago are facing a future that is ill-equipped to care for them. While there are facilities that care for and provide services for severely disabled or ill children such as St. Mary’s Healthcare System for Children in New York, St. Jude Children’s Hospital in Memphis, Tennessee and Shriner’s Hospitals for Children. Most young people are expelled from these programs when they turn 18, in order to accommodate the influx of younger patients.

“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the 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.

At St. Mary’s alone there are some 200 children aging out of its program in the next few years. “We could be talking about 70 percent of those kids ending up in a nursing home if we don’t find an alternative,” he said.

As these children mature, and their parents age, home care becomes more difficult or impossible for the severely disabled or ill. But, with nowhere else to go, an estimated 8,000 people under the age of 30 are among the approximately 1.4 million residents of nursing homes, according to the Centers for Medicare and Medicaid Services. Additionally, aging parents are concerned about the quality of their child’s care when they are no longer around to visit and monitor their child’s care facility.

While programs are being developed to accommodate these young people with special needs, there’s no existing model. This dilemma also stresses the importance of a strong settlement if the child is disabled due to an injury.

“It’s something totally new, so part of it is just educating people about the situation,” Dr. Simpser said. “We may also need to push for specific legislation.”
He said that St. Mary’s officials were exploring the idea of establishing small institutions in homelike settings – with perhaps as few as six young adults – where there would be one or two health professionals on duty at all times.

A place of their own, some place to call home…something that we take for granted, but doesn’t exist for the nearly half a million severely disabled or ill young people in our country.