What Happens When Chronically Ill Kids Grow Up
Doctors once predicted that Miguel Guevara would not survive his childhood. Born with muscular dystrophy, he was told as a young teenager he would not see 20.
Then doctors delayed muscle deterioration with physical therapy. A spinal surgery fixed his backbone, which had twisted into the shape of an "S." Medicine helped with seizures, and constant respiratory treatments kept fluid from filling his weakened lungs.
Thanks to year after year of medical advances, Guevara survived. He is part of the first large generation of chronically ill pediatric patients to reach adulthood.
chronically ill adults
Trouble is, the adult care system is totally unprepared.
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Guevara has lost his in-home visits from a physical therapist and regular trips to Texas Children's Hospital, because the "all services needed" blanket provided to children by the Medicaid system disappears at 21.
Other patients in this generation, whether on Medicaid or private insurance, struggle to find primary care physicians who see adult patients because few doctors exist who are trained to care for complex childhood diseases.
Guevara's in-home nurse thinks he needs a new piece of medical equipment for his lung treatments, but the state has balked at paying for the machine.
The nurse may be gone soon. Guevara's mother, Lenny Lazo, is engaged in a legal battle to keep state funding for nursing hours. A ruling is pending in federal court.
"They tell me I might qualify for someone to come in and clean his bed, clean his room," Lazo says. "That's not what I need. I need someone who can tell me when he's having seizures. I need someone who can tell me when he can't swallow."
Today, 22-year-old Guevara spends most of his time at his mother's home in northwest Houston. Apart from his mother and nurse, he rarely speaks to another adult.
His health is deteriorating. His muscles weaken, his fingers curl tighter into fists, and his arms contract closer to his body, permanently bent at his elbows in the shape of a V.
His mother or his nurse constantly straightens Guevara's legs or repositions his torso in the wheelchair to prevent pressure sores. Seizures are a threat, because Guevara salivates heavily and risks suffocating if no one is near to help.
"I used to straighten out my arms, but now this is as far as I can go," Guevara says.
"Transition" is a buzzword among doctors. It refers to a developing area of medicine aimed at filling the black hole entered by patients like Guevara.
Dr. Cynthia Peacock, who runs one of the few transitional clinics in the nation at Houston's Baylor College of Medicine, says the number of sick children now living to adulthood has created the buzz.
"Back in the late '80s and early '90s, there wasn't a lot of [survivors]. They were kind of like a novelty," Peacock says. "Now the numbers are causing a problem."
About 90 percent of chronically ill patients — with diseases such as Down's syndrome, cerebral palsy, muscular dystrophy, cystic fibrosis and childhood cancer — survive into adulthood.
Each year, half a million of these patients become adults, about 50,000 of whom live in Harris and neighboring counties.
Peacock, who is trained to practice pediatric and adult medicine, worked as a pediatrician at Texas Children's Hospital for years. A doctor with her dual training, commonly referred to as a "med-peds," is ideal for the new transition population, but there aren't many. Sixteen of these doctors graduate each year from medical programs in Texas, about 300 nationwide.
Peacock left her job as a pediatrician to teach at Baylor, training doctors in combined medicine. She never intended to start a clinic, but the lack of physicians in the adult system for chronically ill patients made it a necessity.
Doctors at Texas Children's and Shriners Hospital for Children would often call with urgent referrals.
"What a lot of [the patients] did, they just kind of hung out. They didn't go seek care. They ended up being out there two or three years without care and they come to a critical issue, and they get sick," Peacock says. "So where do they go back to? They go back to Texas Children's Hospital. They walk into the emergency room. Then I get the call."
The patients were too old to receive service at the children's hospital, but could not find a physician for adults. As Peacock treated more patients while searching for permanent doctors, the calls became more frequent.
She eventually approached board members at Baylor, and the college agreed to fund a formal clinic. The clinic treats close to 300 "core patients" who will probably never find another primary caregiver, while a number of other patients are treated temporarily.
Peacock, who works with the help of another doctor, would like to treat more patients. The need is there, she says, but the funding is not. In fact, Baylor loses money each year on the transition clinic.
Children's hospitals are a favorite among donors, Peacock says, but adult programs are not.
"What's prettier, a bald kid or a bald adult?" Peacock says. "Kids are easy to work with; they tear your heartstrings."
Many of the patients in transition aren't mentally retarded, only "developmentally delayed" due to the physical illness. Peacock calls Guevara a smart kid who has talked about working on computers.
"Intellectually, they're all there," Peacock says. "They have problems because they miss school a lot, so they have a real tough time. They don't even fall under the Disabilities Act a lot of times, because they don't have the cognitive disability."
Medicaid has been one of the biggest obstacles for transition patients. Under the state's Comprehensive Care Program, patients younger than 21 receive "any medically necessary and appropriate health care service...regardless of the limitations of the state's Medicaid program."
At 21, each Medicaid case becomes managed by an outside provider, and a cap is placed on the amount of money patients receive. The funding rarely covers the level of care needed for a chronically ill or disabled patient.
State health officials, along with doctors and advocates for these patients, have no estimates on the amount of additional money needed to cover the transitional population.
But the disparity in current spending is great. The state spends about $4.8 billion a year on chronically ill and disabled children, with about $1.8 billion spent on disabled adults, according to records from the state's Health and Human Services Commission.
The state Department of Aging and Disability Services offers a number of "waiver" programs designed to meet costs not covered by Medicaid, but those programs come with lengthy waiting lists, and not all transition patients are eligible. The most desired waiver comes with a six-year wait.
A patient on Medicaid who needs an advanced treatment must rely on the Harris County Hospital District. The wait list for an orthopedic procedure at the county hospital, for example, is about 2,000 people. When Peacock's patients need an advanced procedure, she seeks favors.
"I have to whine, beg and plead with friends, co-workers and other providers to see my patients," Peacock says. "If I step outside of that system, to try to use someone out in the private sector, they won't even answer the phone."
One of Peacock's patients has spina bifida, a birth defect that causes an undeveloped spinal cord. It's a crippling disease that can cause paralysis. The woman, who comes from a lower middle-class family, walks with the aid of a crutch and uses public transportation. She travels mainly to her downtown doctor appointments and the University of Houston, where she attends a full schedule of classes.
Medicaid pays for a new crutch, which costs about $1,000, every two years. The woman wears down the crutch every two months.
"We're having to fight for her every couple of months," Peacock says. "There are times when she doesn't have her crutch and she can't walk. So she can't get to school, so she sits at home in front of the TV until we get the crutch, and then she gets back to school. These kind of things go on all the time."
Patients with private insurance have trouble in transition as well, despite a state law that allows a disabled child to remain on his or her parents' insurance indefinitely.
For instance, another one of Peacock's patients has congenital heart disease and remains on his father's insurance while he attends college. But the insurance company recently wanted to drop the 25-year-old, saying his college enrollment was grounds to believe he was not truly disabled.
Survival rates among children with congenital heart disease have risen about 85 percent since 1985, but the disease still takes its toll. The son can handle only one or two classes a day, Peacock says, because of his illness.
"I had to write letter after letter to get the insurance company to understand," Peacock says. "If they had not met me, I think the insurance company probably would have cut them off."
Navigating through insurance regulations, especially when seeking coverage for a disabled patient, is a nightmare. Peacock says she didn't understand them well during the clinic's first year, which made translating the insurance jargon for her patients almost impossible.
She eventually secured enough funding to hire a pair of social workers, who often spend as much time as the doctors with the patients and families.
"I could do the medical," Peacock says, "but my eyes glaze over when my social workers talk about Medicaid."
Lisa Osteen, one of the clinic's social workers, serves Peacock's 300 core patients and a group of transition patients who do not visit the clinic, but have reached out for help.
Her main job is finding doctors who will accept these patients. According to Osteen, a doctor's reluctance can be as subtle as a fear of a disabled patient disrupting a waiting room.
"We have literally had patients wheel into a doctor's office, and they've been on oxygen, or had a feeding tube...and the doctor has taken one look at them and said, 'I have no experience working with this kind of condition, I really can't take you on as a patient,'" Osteen says. "That happens more often than we'd like."
Medicaid reimburses about 20 percent of what private insurance covers, so it's not good business for a doctor to accept a large patient population on Medicaid.
"We're hoping for systemic change, that Medicaid will pay better," Osteen says, "so doctors can afford to take care of this population."
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, 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.
"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.
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.
Once a month, his mother takes him to the mall. Lazo's minivan isn't equipped for a wheelchair, so Guevara's mother must carry him from his bed to the van and put him in the seat. The wheelchair is transported in the back. At the mall, Lazo lifts Guevara from the van and straps him in his wheelchair.
"I don't like that," Guevara says.
Guevara usually wakes in the early afternoon. He watches TV, or listens to music on his computer, but that gets boring pretty quickly. A favorite pastime is decorating and redecorating his room with the help of his younger brother or sister.
A Scarface shower curtain serves as the door to his room, left over from a previous decorating theme with Tony Montana posters covering his walls. The room is currently decked out with Freddy Krueger, homage to another favorite movie.
He also likes to go outside, and a concrete slab was poured at the lip of the front door so Guevara could drive his wheelchair in and out of the house. If he wants to venture further from home, maybe around the block, his nurse will troll behind in her car.
"There's some times where I get kind of lonely," Guevara says. "I see my brother go to Little League, and I'm happy for him, but then I get sad also. It's kind of hard to explain."
"Texas has the largest medical center in the world, yet even we struggle to provide the physicians required to address the medical needs of this population," Peacock recently told members of the state legislature's Health and Human Services committee. "Something needs to change and it needs to happen quickly...we need to lead this effort.
It was the first time she spoke to the committee, and the presentation lasted about five minutes.
"A lot of them weren't knowledgeable about it, that it was a problem. Didn't understand the problem," Peacock says. "They were kind of aware, but we kind of sealed it for them, so they could understand. We need to identify this group of patients, and they need to continue to maintain the services they get."
Peacock is also helping draft a bill to be presented to the next legislature. The idea is to change the way state agencies, such as the Texas Education Agency and the Texas Workforce Commission, handle the large population of these patients.
A working group that included Peacock met from September to May to develop "meaningful system change" in the way the state cares for transitional patients and prepares the population to become productive adults.
One of Peacock's main arguments for reform is that, as they survive longer, patients will bankrupt state-funded programs if they are not better trained to enter the workforce and contribute to the Social Security and Medicaid coffers.
"They're going to be a bigger burden on society than the geriatric population. If we don't get them on the payroll...they're going to break the bank," Peacock says. "I want to collect my Social Security check when I retire. We ain't going to be doing it if we don't help this population come across."
A federal program, Home and Community Based Services, provides funding for states to establish assistance programs to the disabled population. The Comprehensive Care Program, which applies to children in Texas, is partly funded by this federal program.
For every dollar the state spends on these programs, federal Medicaid reimburses 60-70 percent.
That money has allowed California to establish a number of programs that assist chronically ill patients — including disabled and AIDS patients — to receive in-home care.
Minnesota and New York have also proactively established similar legislation.
"The federal government will approve that as long as the state makes assurances that the cost of caring for this population would be equal to or less than caring for them in an institution," Elliot says.
Elliot continues to fight the state one case at a time. A judge has yet to rule against his clients, but while each case sets some precedent, Elliot says a sweeping change cannot occur through the judicial system.
"I can only hope, because otherwise these families that are really in peril, we're going to have to continue to beg the state to keep the services going and eventually hope we get a ruling from a judge saying that the state has to continue providing these services," Elliot says.
Advocacy, Inc., the agency Elliot works for, lobbies for legislators to create a program in Texas similar to California's. According to Elliot, the state has been slow to acknowledge the need.
"It's clear to me that this issue of these folks needing services beyond 21 at an intense level was not on [the state's] radar screen," Elliot says, "Their planning towards addressing it has been wholly inadequate."
Guevara is Lenny Lazo's firstborn. She has since given birth to two children — a boy and a girl — but remains a single mother. She cared for Guevara without aid of a nurse until the boy was 16. The family moved to Houston from Washington, D.C., away from family and friends, and Lazo needed help.
Lazo works three jobs as the family's sole source of income. A couple days a week, she works at two beauty salons and is gone from 8 a.m. to 10 p.m.
Her third job is with a company that provides workers to nursing homes, and Lazo is unsure where she'll be, or when she'll be gone, until the day before she works.
The family relies on Guevara's nurse to keep him at home. Elliot expects a ruling on Guevara's case sometime this summer, but the family risks losing the nursing hours Guevara needs.
If that happens, Lazo isn't sure what she would do. The thought of placing Guevara in a state institution, away from her and his brother and sister, is incomprehensible. She could not afford to quit working.
"It's to the point where she would lose the house and everything she has worked hard for," says Guevara's nurse, who asked that her name not be used. "It's kind of unfair in that sense."
Guevara knows little of the legal issues at stake. He misses the trips to Texas Children's Hospital and the physical therapist who used to come to the house.
His happiest times, he says, were during high school, and he keeps two framed photographs next to his television — one from high school graduation, the other from his senior prom, posed with a group of cheerleaders.
But he wanted to turn 21. A couple friends had promised to take Guevara to a bar, and he was excited by the possibility. He stayed awake late the night before, counting down the hours to his birthday.
Guevara had a seizure that night. His mother was home, and the seizure passed without incident. His birthday, however, was ruined.
"It doesn't mean that when he turned 21 he's going to walk again, be able to take care of himself," Lazo says. "It's not like because he's getting old, he's getting better."
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