Update:
Read news story on the Oct. 20 rally from the Springfield State Journal-Register.

Read Group pushes for end to institutionalization of disabled, seniors
(Urbana/Champaign News-Gazette)

Lester Pritchard, co-founder of the Campaign for Real Choice in Illinois, writes,

Calling for equal treatment of citizens with disabilities and seniors in Illinois, a group of 30 people with disabilities and their friends and family are setting out from from Alton, Illinois tomorrow, Oct, 17, on a 700-mile, four-day journey through the state of Illinois. The journey, called Freedom Ride '05, was inspired by the Freedom Rides of the Civil Rights Movement in the 1960s.

The Ride will continue on to Effingham, Urbana, Joliet, Glen Ellyn, Galesburg, Bloomington, and end with a rally at the State Capitol Rotunda in Springfield at 2:00 p.m. on October 20th where Lois Curtis, the surviving plaintiff in the Olmstead Supreme Court case, will speak.

The riders are calling on the state of Illinois to provide individuals with disabilities and seniors the opportunity to live in their own neighborhood communities.

"Imagine living in a place where you have no control over what happens to you. Imagine that you couldn't leave. Imagine having people who you had no part in choosing control who shares your room, when you sleep, when you wake, if and when you bathe, what you eat, when you eat, what you wear, where you can go and when you can go there. How would that make you feel? Probably like you were in prison.

"All law-abiding Americans deserve to live and participate in their community as equals. No American should be isolated from society unless they are a danger to others or themselves. Every American, regardless of their abilities and disabilities, deserves to be treated with the same respect and dignity," Barbara Pritchard said.

Freedom Ride '05 is pushing for passage of the Community First Act which was introduced in the Illinois General Assembly this past spring. The Act 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 towards the development of strong, viable, quality community living options that will enable people with disabilities and seniors to live independent lives," said Ann Ford, Executive Director of the Illinois Network of Centers for Independent Living.

According to Ford, over 80,000 people in Illinois currently live in public and private 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," said Ford.

A recent national survey by the American Association of Retired Persons reveals that the vast majority (89 percent) of Americans age 55 and over would like to remain in their current home as they age. The survey also found that most respondents (82 percent) do not want to move from their current home if they need help caring for themselves. "The vast majority of people with disabilities and seniors want to live in their own homes, just like every other American citizen," Ford said.

In its 1999 Olmstead ruling, the United States Supreme Court 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."

Despite the high court's ruling, Illinois ranks higher than all but five other states in its rate of institutionalization of people with developmental disabilities. Conversely, the state spends less on community-based services than all but four other states.  As a result, thousands of people who desperately want to live independent lives have no choice but to suffer under inadequate, under funded community services. Many have no real choice but to give up their freedoms in order to receive the care they need.

Institutional care costs more than twice as much as community-based care. In 2002, Illinois spent $115,000 a year for each of its 3,000 residents with developmental disabilities in state institutions. These individuals could be served in the community with 24-hour support for $54,000 a year, according to Pritchard.

For individuals with other types of disabilities, savings of individualized home care versus institutional care can be just as dramatic. According to Gerard Broeker, Executive Director of the Statewide Independent Living Council, a state program that assists individuals with disabilities living in nursing homes the opportunity to live independently in their communities saves Illinois taxpayers about $12 million a year due to the cost differential between home assistance and institutional care. "Community supports should be expanded in Illinois. They provide a better lifestyle for individuals and benefit the Illinois taxpayer as well," Broeker said.

People should be able to choose the support services that best meet their needs, not those that are easiest to provide to a large number of people. Institutional care is a thing of the past. We need a 21st Century approach to this issue. The status quo is unacceptable.

Freedom Ride '05 was organized by the Campaign for Real Choice in Illinois, along with several other disability rights organizations in Illinois including the Coalition of Citizens with Disabilities in Illinois, Statewide Independent Living Council of Illinois, Illinois Network of Centers for Independent Living, Illinois Assistive Technology Program, and United Cerebral Palsy of Illinois.

More background and research on this issue.

More from the Illinois News-Gazette.

Lester Pritchard and his wife, Barbara, are coordinating Freedom Ride '05.