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

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 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.

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.

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