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Archive for Sunday, January 27, 2002

Hospitals committed to long-term, costly care

January 27, 2002

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In a year when dire budget straits have lawmakers slashing state supports for the frail, poor and elderly, one promise remains unbroken.

No one will ever tell a Kansas parent to take a son or daughter out of a state hospital for the mentally retarded. The hospitals, officials say, will always be there.

Alicia, 19, is one of six school-age students at the Kansas
Neurological Institute in Topeka. Alicia, whose last name is kept
confidential by KNI, has been in the state-hospital system since
she was 3 years old.

Alicia, 19, is one of six school-age students at the Kansas Neurological Institute in Topeka. Alicia, whose last name is kept confidential by KNI, has been in the state-hospital system since she was 3 years old.

It's an expensive promise.

This year, six school-age residents at Kansas Neurological Institute in Topeka are expected to cost Kansas taxpayers $900,000.

"These are people with severe mental retardation, multiple handicaps, and lots and lots of medical issues," said Leon Owens, superintendent at Kansas Neurological Institute.

Spending $150,000 on each student's care and schooling is not out of line, he said.

"That's for everything," Owens said.

Of the six students, only one can walk, talk, feed himself or use the bathroom. The youngest is 18, the oldest not quite 21.

All six grew up either at KNI or Winfield State Hospital and Training Center, which closed in 1998. Now, they are the last of the KNI residents young enough to be in school.

"We're almost out of the 'children business,'" Owens said. "Most folks, nowadays, are opting to keep their children at home or in community programs close to home. We don't get a lot of referrals."

Owens didn't know how many of the six would remain at KNI after completing their schooling.

"That's up to the parent or guardian," he said.

Elvis and Barbie

Nineteen-year-old Alicia hospital officials declined to release her last name, citing confidentiality concerns is one of the six. She's been in the state-hospital system since she was 3.

Her teachers have figured out she likes to listen to Elvis Presley and handle Barbie dolls. Alicia can hold a crayon and make marks on paper.

She cannot read, write or count to 10. At best, her teachers hope to find ways to help Alicia let others know what she wants or needs.

For example, they've taught her to point to a picture of fingernail clippers when she wants someone to clip her fingernails.

"When we say 'school,' we're not really talking about the school in the traditional sense," Owens said. "It's more about finding ways to stimulate a person in their own environment; it's how we learn about them and their desires. Everyone has the right to be trained, to learn and be stimulated.

"That's what we do here," he said. "We try to provide meaningful life."

Once a week, a KNI worker takes Alicia to the Goodwill store in Topeka, where she and the worker spend about an hour stapling price tags onto shirts, pants and dresses.

On school days, a worker sends Alicia's mother a first-person e-mail, letting her know how her daughter is doing. The worker then shares the mother's responses with Alicia.

Every two hours, Alicia, who weighs about 70 pounds, is carefully lifted out of her wheelchair and placed on a padded mattress.

"That's pretty much routine two hours in the wheelchair, one hour out," Owens said. "We do that to prevent skin breakdowns."

The choice

The six students three girls, three boys don't have to be at KNI.

They could be in residential programs similar to those run by Cottonwood Inc. and Community Living Opportunities in Lawrence. But the students' parents and guardians think KNI is best for them. So there they stay.

When Kansas closed Norton State Hospital in 1988, state officials assured parents and guardians they would always have a choice between having their dependents cared for in an institution or in a community program. The promise was reinforced 10 years later during the Winfield State Hospital closing.

Each year, parents and guardians of residents are asked if they want their dependents to remain at KNI or the state hospital in Parsons. The choice is theirs.

"Ours is a system based on choice," Owens said. "We're very person-centered."

Last week, KNI had 183 residents. Parsons State Hospital and Training Center had 195.

The Parsons hospital has about 25 school-age residents, most of whom are diagnosed as being both mentally retarded and mentally ill.

Unlike their peers at KNI, the Parsons students' stays last only six to 12 months, said Gary Daniels, Parsons superintendent.

"We're really a backup for families and community programs when the need for intervention gets very intense," he said. "These interventions give the community programs enough time to build or rebuild support services so that the individual can be returned to a less-restrictive environment."

Costs per student

The Greenbush Education Service Center in Girard runs the schools at KNI and Parsons hospital. The hospitals pay Greenbush about $25,000 for each student.

Under federal law, all special education students, including those in a state hospital, can be in school until they turn 21 or 22, depending on their birth date.

After the last of the six KNI students complete the schooling sometime in 2006 the school will close and the students will change.

"While they're in school," Owens said, "we're looking for whatever interests or stimulates them. Once they're out of school, we'll build those interests and preferences into their daily routines."

Tom Laing, executive director at Interhab, an association representing 48 community programs for the developmentally disabled, said the parents and guardians should be encouraged to move the six into community placements.

"There are very few people who cannot be served in the community more successfully than in an institutional setting," he said. "That's why you've seen so many state-hospital beds close in the past 15 years. People do better in the community."

Community settings are less expensive, too. Today, the average resident's care at KNI costs about $363 a day. The same resident costs about $265 a day in a community program.

'Reassuring' and reality

Laing said state officials and community programs should do more to encourage parents and guardians to move their dependents out of the state hospitals.

"We tend to be so service oriented that we tend to overlook the need to educate the public," he said. "We need to do a better job on that."

But a parent's choosing between a state hospital and a community setting isn't as easy as it sounds.

"Being totally responsible for someone with severe and multiple disabilities is absolutely overwhelming," said Brooke Seager, whose daughter, Jessica, now 21, spent much of her childhood at Winfield State Hospital.

"Knowing that at the institution, a doctor, a nurse, a teacher and the caregivers are going to be part of the same team and in the same building is very reassuring," said Seager, who lives in Wichita.

Seager moved Jessica to a three-bed group home in Wichita after learning Winfield State Hospital would be closed.

"It's been a long road to get quality services, but we're there now and I'm really pleased. It can be done, yes, but I sympathize with parents whose children are still there.

"They're in a situation where they're frightened and they want to do what's right, but they see the institution as something that's always been there for them. And now the community programs are saying, essentially, 'Give it all up and trust us.' That's not easy."

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