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September 2006
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Buffalo News For disabled young adults, 'Independence' is a dream Jon Gardner, of Geneseo, has muscular dystrophy and needs 24-hour care - he needs help making and eating meals, getting dressed and getting into and out of bed, among other daily activities. But he still wants something many 22-year-olds want: independence. "I've [dreamed] of being able to leave home and live my own life and not be under somebody else's roof," he said, "and I've always thought I couldn't do that because . . . I just wouldn't be able to survive without any help." That could be changing. Elma resident Christine Muller wants to build a different type of group home, one that is set up more like a college residence hall but with the look and feel of an apartment complex. It would be staffed with aides for around-the-clock care and provide transportation for its residents, people like Gardner and like Muller's son, Ben, 21, who has similar accommodations at his college, Edinboro University of Pennsylvania. Muller started the Independence Foundation last year and, with local agency People Inc., sent a proposal for Independence House, as she named the complex, to the state Office of Mental Retardation and Developmental Disabilities. The office gives grants to build and staff nursing homes and group homes, among other projects. Her proposal was approved in February. The state will give her money to build and staff Independence House. So far, she doesn't have a site. Muller doesn't want her son and the seven other people who have committed to living in the complex to be isolated. She wants sidewalks, nearby grocery stores and drugstores and a bus line that can take residents to the movies or to a job. She would also like the land to be at least a couple of acres - her long-term vision includes another residence house and a swimming pool for aquatic therapy. Her son gets much of that mix at Edinboro University, and she wants that to continue. "[Ben has] had this world opened up, and we just don't want to go backwards," Muller said. Muller and People Inc. program director Concetta Ferguson have been working with real estate agents for months. "She wants land in a commercial neighborhood with sidewalks like on Transit Road, and that land costs a million dollars," Ferguson said. The Office of Mental Retardation and Developmental Disabilities will likely only give $100,000 for land, Muller said. The exact amount will be determined after the agency appraises the land, she added. There's more money for building the complex, which Ferguson said will cost roughly $600,000, and for staffing it. But there's little money, from the state office or other grants, for the actual land. Whatever the cost, the future residents are looking forward to a successful land contract and new home. "I'm mostly inside or around the house outside," Gardner said. "I don't reallly have the freedom to go out places when I want - only when it's convenient to transport me." It's the same for Ian Campbell, a University at Buffalo student and Orchard Park resident. "I haven't had the social opportunities other people have had. I went where my parents went," said Campbell, 19, who has spastic cerebral palsy and also requires a wheelchair. The future Independence House residents are willing to wait, though they don't admit to being patient. "I've graduated from college, and it's time I stopped living at my house. That's what everyone else at this age does. I wasn't living here in college, so I don't want to come back here," said 23-year-old Eric Grammas of Geneseo. Like Gardner, Grammas has muscular dystrophy and lives at home. He sees his current and future options as limited, so he has strong hopes that Muller and the foundation will build the home soon. "It's live with my parents, live in a nursing home or live in the Independence House," Grammas said.
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