What Happens When Chronically Ill Kids Grow Up

Physically disabled young adults who weren't supposed to live this long find themselves hemmed in by an unprepared heath care system

"This is a father who probably saved the state millions of dollars by adopting this young girl," Elliot says, "and this is how they treat him, reward him, for having cared for one of the state's most vulnerable children."

The hardship these patients face is not strictly medical.

Patients with less severe conditions than Robbins's are healthy enough to have some semblance of an independent life.

A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Daniel Kramer
A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.
Photos by Daniel Kramer
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.

Chronically ill patients, however, are so involved in the pediatric system that doctors and nurses are often the largest influence in their lives. After the transition to adult care, there are few mechanisms for such patients to be socially involved.

Ana Calvo faces that problem.

She was born in El Salvador with no arms or legs, a result of her mother taking thalidomide during pregnancy. The drug, once prescribed for morning sickness, had been outlawed in Europe and the United States, but was still prescribed in Central America at the time of Calvo's birth.

Doctors were not sure if Calvo would survive as a child. She had an uncle living in Houston, who suggested the family move here for access to the surgeons she needed.

Her family did, and for almost 18 years, Calvo was a patient at Shriners. She needed several surgeries as a child, but when she aged out of the hospital at 18, Calvo was a healthy adult.

So, she started looking for an adult care provider. Her pediatrician, however, did not want to let her go.

"I kept going to [my pediatrician] after 18. I asked her some adult questions, as far as, 'Can I get pregnant, and what would happen?'" Calvo says. "She felt a little uncomfortable and said, 'You know, I think you're getting a little too old for me.'"

After some searching and rejections, Calvo found a physician for adults who would see her.

Doctors at Shriners had also fitted Calvo with prosthetic arms and legs. Much of her time at the hospital as a teenager was spent learning to use the prosthetics. Calvo later ditched the fake limbs for a wheelchair.

"I can do everything without them," Calvo says. "It added another 100 pounds on me, and I felt like a walking robot, and I just hated it."

She eventually graduated college and found a job at her former hospital, directing a new transition program designed to instill independence in the hospital's pediatric patients.

Shriners conducted a survey through its national hospitals in 1997 to learn what its patients wanted and were doing after aging out of the system.

Almost 90 percent of the patients wanted to find a job. Another priority was marriage and children. "Teens expect high hopes for the future," was one finding of the survey.

Results from the young adults — former Shriners patients — were not so hopeful. "...respondents are less likely to live independently and less likely to be working."

The former patients said they faced parental protectiveness, fear and lack of motivation. About half felt their health would deteriorate within five years, or feared for their safety.

"Most of our patients were staying at home, not getting an education, not getting a job," Calvo says. "We're trying to get all these surgeries and all these things done so they can walk and they can be fine, but then they're just going home and doing nothing. What are we doing?"

Calvo now works with patients when they enter high school, hopefully engaging them in thinking of life outside of pediatric care.

The transition program at Shriners also takes disabled patients on field trips. One event takes teenagers, by public transportation, to the grocery store where the kids buy items off a grocery list, then go back to the hospital and cook a meal.

There's an "employment readiness" and summer internship program where older teens learn about résumés, interviews and explaining a disability to a potential employer.

Peacock has learned more about advocating for her patients' independence as well, something she was lost on when she first started the clinic. She believes many of her patients have not been prepared by the school system.

"The school districts are just housing them, they're not rehabbing them," Peacock says. "The school district keeps them up through 21, and then they age out. Because nobody has worked with them, and nobody is showing them the ropes, or how to do supportive employment — even if it means a little assembly line kind of thing — they're at home with the family."

Peacock continues, "I've had mothers who have had to quit their jobs. I'm telling families, 'The school district failed you; they should have been there for you telling you what you need to do to get your loved one in a situation where they can mainstream in society.'"

Parents don't always buy the idea of independence. Calvo says her effort with patients is often nullified by parents' reluctance to think of their child living or working outside the home.

"Some of the parents feel that, 'Oh my child is going to live with me for the rest of my life,'" Calvo says.

Guevara is one of those patients. Since graduating from high school, he rarely leaves his house.

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