By Dave Ranney, Journal-World

Saturday, August 21, 2004

Ed Kline has spent the past three years in a Topeka nursing home. He wants out.

"There is no hope in here," he said. "The feeling you get is, ‘This is it folks, you're here to die.'"

Kline, 54, isn't at Topeka Healthcare Center because he's frail or elderly. He's there because he's partially paralyzed.

"I had a stroke in March of 2000," he said, "and while we were dealing with that, they realized I needed to have the valves in my heart replaced. So I had surgery. I was in bad shape for a while."

Today, Kline uses a wheelchair to get around and a mechanical lift to get in and out of bed. With the help of a part-time attendant, he could live in an apartment.

"I want my life back," said Kline, a former merchandise distribution analyst for Payless ShoeSource corporate office in Topeka.

He isn't alone. Advocates for the disabled say there may be more than 3,000 people living in Kansas nursing homes who don't need to be there.

"These are people who are in nursing homes who've said they want out. They want to live in the community," said Rocky Nichols, executive director at Kansas Advocacy and Protective Services. "That's not a number we came up with, that's the nursing homes' number."

In all 50 states, nursing homes are required to compile information on each resident. Among the data compiled is whether the resident would rather live somewhere else.

In Kansas last year, Nichols said, 3,468 nursing home residents said they wanted out. It's unclear how many were truly capable of moving to a community setting.

"That's what we want to find out," he said.

Campaign under way

Earlier this month, Nichols' agency asked the Kansas Department on Aging for a list of names and addresses of those who want out of nursing homes.

Aging officials denied the request, referring it to the Centers for Medicare and Medicaid Services regional office in Kansas City, Mo., which, in turn, forwarded the request to the centers' headquarters in Washington, D.C.

"We've passed them on to central office," said Paul Shumate, branch manager in charge of nursing home surveys at Medicare and Medicaid Services. "That's a decision they'll have to make. We don't have the authority."

If Nichols gets the list, he said it would launch a statewide campaign aimed at helping people with physical, mental or developmental disabilities move out of nursing homes.

"A person with a disability has a right -- a right granted under federal law -- to live in the most integrative, most inclusive, most community based setting," Nichols said.

This right, he said, was established in 1999 by the U.S. Supreme Court ruling in Olmstead v. L.C., a Georgia case involving two women with mental retardation who were institutionalized despite widespread agreement they didn't need to be.

"It's real simple," said Kirk Lowry, Kansas Advocacy and Protective Services' attorney. "The Court said unnecessary institutionalization is discrimination. It hurts people. It's like in Brown v. Board of Education, the court said segregation was harmful to children of color. Segregation is inherently unequal. In Olmstead, the court said institutionalization is segregation -- you're taking someone out of mainstream society. States cannot promote segregation."

Moving people with disabilities out of nursing homes is not expected to increase the state's Medicaid spending, Nichols said, because community settings are less expensive. Also,he said, the moves wouldn't add to the number of disabled Kansans waiting for services because the payments going to the nursing homes would be used to rent apartments and pay for attendant care.

‘A Kansas crop'

At the Topeka Independent Living and Resource Center, Steve Richardson, 52, is taking the law into his own hands.

"I'm convinced that people with disabilities are a Kansas crop. We're like wheat," he said. "People out there are making money off of us. They want us to stay put."

Richardson, an independent living advocate at the Topeka center, has been in a wheelchair since a 1977 spinal cord injury. He's part of a group that visits nursing homes in search of residents who could be in community settings.

"We're not always welcomed," he said, smiling. "I'm not going to lie, the cops have been called a few times."

Richardson found Kline at Topeka Healthcare Center and is making arrangements for Kline to move out next month.

"As long as the good Lord is willing, I'm going to do everything I can to get as many people out as I can," Richardson said.

"He's given me hope," Kline said. "I know it won't be the same. I'll have to make adjustments. But it'll be worth it. I'll get my dignity back."

Industry reaction

A spokeswoman for the state's nursing home industry said there was no interest in holding residents against their will.

"We're in the business of caring for frail, elderly Kansans who for whatever reason cannot continue to live in their own homes and who need the level of care we provide," said Cindy Luxem, vice president in charge of operations at the Kansas Health Care Assn.

"We don't want to see someone in a nursing home who doesn't need to be there," she said. "But I think we need to recognize that there are some people who want to be in a nursing home, and depending on which part of the state they're in, it may be the only place available."

Luxem said she doubted 3,468 nursing home residents -- 17 percent of the total -- could be living in community settings.

"That's taken out of context," she said. "There were people who had been in the hospital and who were in the nursing home for two weeks before going home, so when they were asked ‘Do you want to be here?' they said no."

Other survey respondents, she said, were in various stages of dementia and not fully aware of the circumstances leading up to their being in a nursing home.

"The question is asked and we have to put down whatever the resident says," Luxem said. "We don't get to attach a note that explains why they're where they are."

It's not known if any -- or how many -- nursing home residents in Lawrence could be living in noninstitutional settings.

"If there's one, that's too many," said 35-year-old Lorraine Cannistra, who has cerebral palsy and uses a wheelchair.

Cannistra maintains an apartment in Lawrence with the help of attendant care workers.

"This is a pretty busy place," she said, noting that under Medicaid she's eligible for 49.75 hours of attendant care each week.Cannistra, who has a master's degree in rehabilitation counseling from Emporia State University, said she has taken the assessment to determine whether her disabilities are considered serious enough to warrant nursing home care.

"I scored high enough. I could be in a nursing home, easily," she said. "It makes you wonder how many people are out there like me who aren't aware of what all's available."