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

David Robbins was the first to fight the state. He was completely confined to his bed in a makeshift hospital room at his parents' home in southeast Houston. He had been able to sit in a wheelchair when he was younger, but his cerebral palsy advanced in his later teen years.

He was barely able to speak, and his sight had deteriorated to near blindness. His bones were so fragile that doctors had accidentally broken his collarbone and femur when moving him.

Barbara and Mitchell Robbins, David's parents, worked full time, and David relied on 16 hours of state-funded nursing care a day. Along with administering medicine and regulating his ventilator, David's nurse shaved his face, washed his body and changed his diapers when needed.

David Robbins faced leaving his parents' home for a state institution when he turned 21. His mother, Barbara (right), sued the state and won.
Daniel Kramer
David Robbins faced leaving his parents' home for a state institution when he turned 21. His mother, Barbara (right), sued the state and won.
Ana Calvo (left) was born with no arms or legs. She now works at Shriners Hospital for Children, where she helps patients like Charles Anyichie, 18,  transition out of the hospital to adult care.
Daniel Kramer
Ana Calvo (left) was born with no arms or legs. She now works at Shriners Hospital for Children, where she helps patients like Charles Anyichie, 18, transition out of the hospital to adult care.

David, who was never expected to live to be an adult, was set to lose his nurses when he turned 21. Barbara and Mitchell began working with David's Medicaid caseworker months before his birthday to develop a managed plan with some nursing hours.

"We kind of kept an optimism in a way, that surely there was some kind of program somewhere, and we just had to find it," Mitchell says. "When he finally turned 21, we were 100 percent sure that the state of Texas had no provision for the children once they turn 21."

David's parents couldn't afford to quit working, but pledged to adjust their schedules to fill the time nurses wouldn't be available. The state money would cover 25 hours a week, and the company that provided his nurses, Vita Living, Inc., donated an additional 15 hours.

The 40-hour plan, about a third of the nursing hours David had received, was presented to the state but was denied. The state ruled that David needed full-time care, but funds would not provide that through in-home nursing. The recommendation was to send David to a state institution.

The family visited Richmond State School, the closest facility for David to enroll. According to Barbara, administrators at the school and David's doctors agreed he would not be safe in an ­institution.

The school would not be able to provide the intensive care David needed, and the exposure to other patients would place David at high risk for life-threatening infections. The state wouldn't budge.

"We don't know their motivations because we can't see into their hearts, but there was such a resistance," Mitchell says. "There was just almost an overriding desire that [David] was put in a home."

Barbara and Mitchell had no options. So, they sued the state and won.

Steve Elliot, a lawyer with Austin-based Advocacy, Inc., took David's case. The family did not seek anything beyond the nursing care David needed.

Elliot argued that the state's refusal to provide adequate care violated the Americans with Disabilities Act, and ignored a Supreme Court ruling that forcing a disabled patient into an institution is considered ­discrimination.

Shortly before David's birthday, a judge granted a temporary restraining order that stopped the state from cutting David's care. Two months later, in July 2006, the judge ruled that the state must provide the level of care David received as a child.

Today, a nurse resides in the Robbinses' home day and night. Though he is confined to a hospital bed and requires constant care, David's health is stable.

The case has not resulted in any larger changes in the Medicaid system. In fact, David's parents are required to submit new paperwork each year. The plan was approved for 2008.

"You didn't have folks like David Robbins surviving into adulthood 15 and 20 years ago," Elliot says. "Now they are surviving, and there is an obligation, a moral obligation, on the part of the state to come up with a program to continue to serve these now-young adults with severe disabilities, that can continue to live at home with their ­families."

Following the Robbins case, Elliot has filed about a dozen lawsuits on behalf of disabled patients in danger of losing state benefits at 21. He represents Lazo and Guevara, arguing that Guevara is entitled to more nursing hours than he receives.

Guevara's Medicaid plan is currently managed in a way that affords some level of nursing care. That could change, however, if Guevara's equipment costs rise or his condition deteriorates to the point that he needs a costly, regular treatment.

Other Elliot clients are faced with being sent to a state institution. The higher the level of care a patient has before 21, the more there is to lose.

"I find it very heartless on the part of the state that they've told the families that it is all or nothing, it's an institution or it's ­nothing," Elliot says. "In many of these cases, they have not offered anything."

Elliot is currently representing a man in Bastrop who adopted a girl shortly after she was born. The girl, who Elliot describes as a "crack baby," was labeled as severely disabled at the time of adoption.

The girl's adopted father is single and works nights at an H-E-B grocery store. He has relied on an in-home nurse for almost 21 years to care for the girl while he worked.

A Medicaid caseworker determined the girl's health is good enough to survive a state institution. The father and Elliot are suing the state to change that decision.

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