ALTON -- Jamie Ziegler was passionate Monday about the nine months she lived in a nursing home, particularly how she lost her privacy, dignity and identity in order to receive disability benefits.

"I used to never cry until I lived in a nursing home," said the 51-year-old Belleville woman, who once had been a nursing home administrator and teacher. "I thought I could adjust. I found out I couldn’t. As time went on, I didn’t care any more."

The "ride," a four-day caravan organized by Campaign for Real Choice in Illinois, is to promote rights of disabled people to live in their homes with whatever support is needed.

The group is pushing for passage of the Community First Act, which was introduced in the Illinois General Assembly this spring. If enacted, the law would allow a person with a disability to have the state transfer funds it spends, or would have spent, on the person in an institution to pay for long-term care services in the community.

"It’s a first step toward the development of strong, viable, quality community living options that will enable people with disabilities and seniors to live independent lives," said Ann Ford of Springfield, Ill., executive director of the Illinois Network of Centers for Independent Living.

Legal precedent of the bill is the U.S. Supreme Court’s 1999 Olmstead vs. L.C. ruling, which said, "unjustified institutional isolation of persons with disabilities is a form of discrimination.. ... .(and) perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life."

Ford said more than 80,000 people live in public and privately owned institutions and nursing homes. "These institutions may provide a convenient way to care for people, but they rob them of their ability and responsibility of personal choice. Large institutions provide one-size-fits-all care for individuals whose needs vary greatly," Ford said.

The group’s press release says Illinois pays $115,000 per year, more than twice as much for institutional care, as the $54,000 it would pay for community-based care.

Four people from the Alton area are among the 30 in the group who rallied in Alton, then proceeded to Effingham, Urbana, Joliet, Glen Ellyn, Galesburg, Bloomington and the Illinois State Capitol rotunda in Springfield.

Ziegler, who became sick when she had no job or health insurance, needed oxygen and a breathing machine. She said she was hospitalized three times before she entered a nursing home, where she had to stay six months in order to qualify for the state to pay her medical expenses.

To illustrate her despair about the time she spent in a nursing home, Ziegler held up a hairbrush that she said staff kept on a linen cart and used on all the residents of the floor. She told how the first night she was at the home, someone walked into her bathroom without knocking as she used the toilet.

She then held up a bra to show how she secured the bathroom door while using the toilet. "Then I stopped wearing a bra, women in nursing homes don’t wear bras," she said." They either don’t care or it’s easier for the staff. I became one of them."

Ziegler said she now can enjoy what others take for granted, such as getting mail unopened the day it is delivered; not hearing people scream at night; no naked people walking into her bedroom; choice of food and its ingredients; ability to set her own waking and sleeping hours; and not having to be worried about being abused or her possessions stolen.

Speaking through his wife, Barbara, as an interpreter, Lester Pritchard, 56, of Urbana, said the group "is here to do something different today."

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