It took Louis Summers, who is deaf and physically disabled, more than three years to prepare himself to live independently. But it took only a single directive issued by the state one day last February to keep him dependent in a nursing home.
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The irony is not lost on state officials, who acknowledge that roughly 4,000 disabled residents have lost the right to a personal assistant since the freeze went into effect in February. By midsummer that number could rise to 5,000. “It costs about $1,200 a month for the state to pay for someone to be institutionalized; the average home cost is about $600 a month,” says Melissa Skilbeck, a spokeswoman for the state Department of Rehabilitation Services, which oversees the home-services program. “We are proud of our home-services program. We hope there’s a way to fund it so we can reopen intake.”
Summers, however, doesn’t want to wait. He was born and raised in southern Illinois, and he’s been in and out of hospitals and nursing homes since 1989, when he was hit by a train. “I was walking along the tracks, and I didn’t see the train coming,” says Summers, who was born deaf. “I’ve been in a wheelchair ever since the accident.”
Most agencies that provide personal assistants charge about $14 an hour–as Stephanie Renner discovered when her son Patrick was disabled last year after he was shot. “Right now my mother, myself, and Patrick’s girlfriend are taking care of him, but it’s very hard,” she says. “We don’t have the money to pay $14 an hour. If I got some assistance, I could pay someone $5 an hour. But the state won’t help us at all. All Patrick needs is someone for a couple hours in the morning. Someone to help him get out of bed, get dressed, take a shower, and help him with his bowel program.”
It would be irresponsible for the state to continue full home-care programs if it doesn’t have the money to pay personal assistants on time, Skilbeck says. “You’re dealing with an individual who may not get by without a paycheck. A nursing home or an institution has more cash in reserve.”
Summers did not intend to take part in those demonstrations. But he was downtown on other business and got swept up in the protests. “The transportation system that brought Louis downtown failed to pick him up,” says Gerbig. “He was in a bind. And he wound up staying overnight at a hotel and meeting a lot of the protesters. He’s been politicized by this. His life will never be the same.”
