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LIFE House helps spinal cord victims find independence

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    LIFE House helps spinal cord victims find independence

          photo: Steve Dixon
    Jeremy Scott (left) listens as Walter Hawes of Advanced Home Care explains the operation of a lift that will help move him from his wheelchair to the bed. Scott is excited to be living in his own place after being in a nursing home. LIFE House will provide 20 apartments for people with spinal cord injuries.

    LIFE House helps spinal cord victims find independence
    By John Boyle

    Feb. 16, 2003 10:58 p.m. Organizers and caseworkers can talk for hours about what LIFE House means to its new residents, but a single tear slowly rolling down Jeremy Scott's cheek says it the most eloquently: He's found a home.

    "When I found out about LIFE House, I thought it was like a dream come true," said Scott, a 33-year-old Canton native with a rare disorder, Ankylosing spondylitis, that has left his spine fused and him confined to an electric wheelchair.

    "To be able to take 20 young people out of nursing homes and place them in their own apartments where they can be more independent and grow in their lives, only God could make something this big happen."

    The LIFE House - Living Independently is For Everyone - opened this month and over the next two weeks will welcome its 20 new residents, all of whom have spinal cord injuries or other paralysis-causing conditions. It's the first project of its kind in North Carolina.

    Scott, who has spent the past two years in The Laurels at Summit Ridge nursing home and then a brief stint at Thoms Rehabilitation Hospital, moved into his two-bedroom, 960- square-foot apartment Thursday.

    "I feel like a little kid at Christmas," Scott said. "And this is the best toy I've had in my entire life. I've not slept in three nights."

    A long road

    Thanks to the dogged effort of dozens of local agencies, LIFE House is coming to fruition after more than six years of planning and one year of building.

    CarePartners, a group of companies providing home health and hospice care, and the Thoms Community Foundation spearheaded the project. Volunteers of America of the Carolinas owns the property and will manage the facility. Thoms and CarePartners have developed the program piece - the nuts and bolts of how it will work.

    The 20-unit, $2-million apartment complex behind the Hollywood Cinemas off Hendersonville Road has required the 32 community groups involved in the project not only to "think outside the box," but to discard the box altogether in some instances.

    "We're doing things we don't normally do," said Marjorie Scavella, director of Section 8 (a rental assistance program) at the Housing Authority of Asheville. "It's been great. Even though we've had to go out of our way, the people we're helping are very appreciative, so it's great for all of us."

    For example, Section 8 usually provides tenant assistance after the tenant has found a place to live. But with LIFE House, the assistance is tied to the apartment unit and stays with the resident as long as he or she is in the unit.

    Also, Scavella usually has tenants come to her for group orientations, but she's made accommodations for LIFE House residents, going to the residents and doing individual orientations when needed.

    LIFE House will also require some new cooperative relationships among health providers, as well as new approaches from residents who may have become accustomed to nursing home care and will now have to take more control over their lives.

    Michael Faulkner, the spinal cord injury coordinator at Thoms, wrote the program and brought the community together on the project, leading regular meetings that sometimes involved 25 players or more.

    "For me, it has been one of the most challenging projects in my career," Faulkner said. "It's hard for me to speak in words about this. To start something in a vision and to have it carry through to fruition - with all the obstacles, hurdles and problems we've encountered - it's reinvigorated my belief that new things can happen. It's a good example of how communities and resources can work together."

    Indeed, LIFE House is serving as the model for similar projects now in the planning stages in Charlotte and Greenville, N.C. CarePartners and the Thoms Foundation came up with the initial $186,000 to buy the two acres of property, but funding has come from the City of Asheville and Buncombe County, as well as state and federal sources.

    "It's an unbelievable list of folks involved in this," said Scott Buchanan, vice president of planning for CarePartners. "Almost every service provider in the county is involved in this."

    Loretta Hudson with VOA puts it this way: "It's a new frontier."

    The idea was the brainchild of Dr. Margaret Burke, the former chief of the medical staff at Thoms who now works at Mountain Neurological Associates.

    "What made me think about this in the first place is there was no place for young spinal cord injury patients to go. They go to nursing homes," said Burke. "What crystallized it for me was a patient of mine, a young man who was injured at 19. He was a high-level quad who couldn't use his arms at all."

    After a stay at Thoms, Burke got him placed in GreenTree Ridge nursing home.

    "He was in with a bunch of extremely old people who were usually demented," Burke said. "He probably went through 10 roommates, 10 people who died. I thought it was terrible."

    Burke says facilities exist for people with head injuries or mental retardation, but a specific facility for spinal cord patients was lacking.

    "It's so important to have a place focusing on peers helping peers," she said. "Over the years, we've learned that patients learn a lot more from their peers than from the medical community."

    A new building, a new chance

    That's certainly the idea at LIFE House, a square doughnut- shaped, 22,000-square-foot structure designed to look more like a college dorm than an institutional building. The apartments were designed specifically to meet the needs of people in wheelchairs - roll-in showers, widened doorways, low windows and peepholes, linoleum floors in the living room and short-pile carpet in the other rooms, remote control door openers, side-by-side refrigerators.

    The building also features a therapy room, a community meeting area, a gym and wellness center, a computer room and a resident manager's apartment. It's designed to be a place where residents can gain more independence and then move into another, even more independent living situation, if possible.

    "This is wonderful," said Michael Tolbert, 38, who moved into his apartment at LIFE House last week after spending six years at The Laurels nursing home in Asheville. "The privacy is great, and I got peace and quiet."

    An Asheboro native, Tolbert wrecked his car on the way to work in 1996, striking a tree and breaking his neck.

    The wreck left him paralyzed from the neck down, although he does have some movement in his arms.
    Sitting in his living room Thursday, he was complimentary of the care he received in the nursing home but acknowledged that it got depressing living there.

    "The biggest part was the attachment part of it," Tolbert said. "You couldn't really get attached to anybody 'cause you pretty much knew their time was short."

    Unfortunately, plenty of young people just like Tolbert are still residing in nursing homes across America. The National Spinal Cord Injury Statistical Center at the University of Alabama estimates that 11,000 Americans suffer spinal cord injuries each year, with 55 percent of injuries occurring among people in the 16-to-30 age group.

    The average age at the time of injury is 32, and more than 80 percent of those injured are male.
    People with spinal cord injuries have a normal life span, if they receive proper medical care.
    Scott's story

    In Scott's case, it was a disease, not injury, that snatched his mobility away. One day 10 years ago he went to work at a concrete plant in Canton, worked all day and came home.

    "I went to bed one day feeling fine - I'd never even been to the doctor," he said. "I wake up the next morning in a fetal position screaming bloody murder. It was like having a car wreck in my sleep. I thought I was dying."

    Ankylosing spondylitis, a painful and progressive rheumatic disease, affects about one in 200 men and one in 500 women. Often the fusion is limited to the pelvis, but in Scott's case his entire spine became involved, contorting his body and twisting his neck and head down onto his chest.

    Although Scott had been healthy, he had been taking handfuls of Advil every day to deal with pain and discomfort. He continued with that regimen during a remission that lasted until 1996.

    "Then I started falling apart real fast - my neck was twisting down. My vertebrae all fused together, and now my back is all one bone," he said. "I can't roll over, I can't sit up."

    He's also had to have his hip removed after a hip replacement surgery failed. In 2001, Scott's wife left him, leaving him with no one to provide care.

    Like the other residents of LIFE House, Scott has personal care attendants who will help him with tasks he's unable to do for himself, and he's learning to do things for himself that he hasn't done in years, like making a sandwich and opening a drink bottle.

    Any apprehension he feels is well worth the newfound sense of freedom.

    "When I found out I was on the list for LIFE House I just broke down," Scott said. "I never dreamed I'd be coming out of a nursing home."