For The Disabled, Age 18 Brings Difficult Choice

For the Disabled, Age 18 Brings Difficult Choices
By MARC SANTORA
Published: May 14, 2008

Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.

The Stabiners’ predicament, however, is far from unique. 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.”

Each year 500,000 youths in the United States with special health care needs resulting from ailments like congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell turn 18, according to a survey conducted by the United States Department of Health and Human Services.

Many of these young people will transition to adulthood smoothly, but for the most seriously disabled, the options for care often prove limited. As a result, about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.

“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.

While the situation is not confined to New York, it varies state by state. “The people we are talking about did not exist 50 years ago,” said Dr. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. “We simply don’t have a model for these children.”

As the children grow older, so do the parents, making intensive home care more difficult, if it was even possible to begin with.

At 15, Sam Stabiner was a picture of health, with a perfect attendance record at his school and a normal life.

Then the headaches started, growing mysteriously more severe until he had to be hospitalized, fell into a coma and barely survived what doctors now believe was a rare form of meningitis.

For the next five years, he received intensive care at St. Mary’s, which provides care for some 4,000 children through inpatient, home-care, and community-based programs. The demand on the institution is so great, it is planning a major expansion of its Queens center in coming months.

Mr. Stabiner made slow progress, using a wheelchair and with only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five. Beyond the care at St. Mary’s, he attended classes at Public School 79 in Manhattan, which is for children with special needs. He will age out of that program next year, his parents said.

His care is complicated because he had a tracheotomy and needs assistance eating, via a feeding tube. While he has regained some motor skills, the continuing medical care required by the tracheotomy led to his being categorized as medically fragile.

Still, when he turned 18, his parents were shocked to learn how that categorization significantly limited the options for their son’s care.

Erroll Stabiner, 67, said he contacted 87 institutions across the city, the vast majority traditional nursing homes, and found only three that had clusters of young adults. All of those were far from his home and none were particularly appealing, leaving him to try to place his son at the Isabella campus at Audubon Avenue and 190th Street, which had no history of working with young adults.

The administration at Isabella’s was initially reluctant, but after executives at St. Mary’s pressed the case, officials at Isabella’s relented.

The setting that the young Mr. Stabiner left could hardly be more different from the one he entered.

At St. Mary’s, which was the first inpatient palliative care center for children in the country, there is one health worker for every four patients. The rooms are brightly painted, with separate areas for school, recreation and physical rehabilitation. There is an attempt to allow even the most severely disabled patients to develop a routine and build relationships.

Mr. Stabiner’s old room is right off one of the main playrooms, filled with games and toys.

Michael, 17, whose family did not want to give a last name, is now residing on the hall after a nearly fatal car crash left him with a severe head injury. While he has no feeding tube, Michael will also be aging out of St. Mary’s soon and his family could face a similar quandary.

The doctors and psychologists at St. Mary’s believe the group setting and the encouragement of other children with similar ailments help speed rehabilitation, or at least provide comfort, because they are reminders that the children are not alone.

At Isabella’s, Mr. Stabiner is often without any diversions. His parents, who visit six days a week, fear that he will feel isolated and have asked the nurses to put him out by their station so he can get more daily stimulation. To help make him feel young, the Stabiners bought him an array of T-shirts with smart-alecky sayings that make their son laugh.

Despite the doting of the nurses, there is no question that the parents feel something has been lost.

“When we found out Sam was aging out, we were devastated,” said his mother, Leslie Stabiner, 66. “It was very depressing to realize that in a city like New York there are just no facilities.”

And it was not just her son who missed the company. Mrs. Stabiner said she and her husband had developed friendships with other parents at St. Mary’s, some of whom are now facing a similar problem.

For instance, one of the children from their son’s floor at St. Mary’s, Justin, just moved into Isabella’s on the floor above his after the Stabiners told them about their experience.

Mark J. Kator, the chief executive officer of Isabella’s, said that having only one or two people as young as Mr. Stabiner in the 700-bed institution created obvious difficulties.

“It presents challenges in that we are responsible for creating an environment that is good for the patient,” he said. But despite their best efforts, he said, “we are not going to create a milieu that is best for them.”

The situation has propelled the administration at St. Mary’s to begin an aggressive effort to establish a clinical model for new institutions equipped to handle medically fragile children as they age out of existing programs.

“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.

But Dr. Simpser said that if his institution did not push patients out after they turned 18, it could no longer accept new patients.

“It is a terrible dilemma,” he said.