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

"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.

Guevara, shown with his 15-year-old brother Gio, rarely leaves his mother's home.
Photos by Daniel Kramer
Guevara, shown with his 15-year-old brother Gio, rarely leaves his mother's home.
Dr. Cynthia Peacock, who runs one of the few transition clinics in the nation, examines cerebral palsy patient Jesse Melger Teran, 18.
Daniel Kramer
Dr. Cynthia Peacock, who runs one of the few transition clinics in the nation, examines cerebral palsy patient Jesse Melger Teran, 18.

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."
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