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LDC plan faces opposition

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[MAY 21, 2004]  Plans to build four 10-bed homes for the developmentally disabled on the grounds of the shuttered Lincoln Developmental Center may be changing, state officials said yesterday at a public hearing in Lincoln.

Jeri Johnson, director of the Division for the Developmentally Disabled of the Department of Human Services, said the reference to four 10-bed homes has been deleted from the plan. This will give DHS "the flexibility to reconsider or modify to fewer the number of people living in the homes," she told the audience of about 150 at the hearing.

The plan still keeps the commitment to serve 40 residents who need intermediate care, according to DHS spokesman Tom Green. Also still on the drawing board are a crisis unit and a dental clinic for the developmentally disabled, which would be housed in existing buildings. Gov. Rod Blagojevich has submitted a $7 million budget for the project, which would be called Lincoln Estates.

Opponents of the new LDC construction have objected to putting 10 people in one home. Pat Brown, parent of a former LDC resident and a member of the LDC Advisory Task Force, said the new plans might call for five homes, each housing eight residents.

Building new state-operated homes for the disabled on the LDC site still faces opposition from groups who advocate community-based living. The lines were clearly drawn yesterday at a three-hour public hearing at the Knights of Columbus hall, where about 50 people opposed to the plan sat on one side of the hall and a larger group in favor of reopening services in Lincoln sat on the other.

Both sides offered oral and written testimony yesterday to representatives of the Illinois Health Facilities Planning Board, the body that must decide whether another state-funded facility is needed. The board may make the decision at its June 15-16 meeting, or it may postpone the decision until August. Until the decision is made and bids are let for construction of the homes, no work can be done on renovation of any existing buildings.

Members of community-based organizations said the state of Illinois is moving in the wrong direction by building another state-operated facility. The national model today is community-based care, they say, and available funds should be used to help the disabled live in the community, where they are close to their friends and families.

Vicki Wilson, director of the Coalition for Citizens with Disabilities, said research shows that people with disabilities are better off in small home settings than in "segregated" congregate care facilities. Home settings are also much less costly: about $54,000 a year compared with $115,000 a year for care in a state-operated center. She said she believed the needs of all the developmentally disabled can be met in the community.

Parents of former LDC residents objected to the "one size fits all" philosophy, saying their children need a level of care they cannot get in a community-based home. Several spoke feelingly of personal experience with failed placements in group homes. Ernest Jones said his son was "abused and neglected and deprived of meals for punishment" while in community placement but was very happy during the 24 years he lived at LDC. "Group homes are fine for many people, but not for people like my son," he said.

Sheila Romano, director of the Illinois Council on Developmental Disabilities and a member of the task force, said the state of Illinois has many large congregate care facilities but ranks very low in its support of people in community centers. Instead of building new facilities, she said, the state should use its available funds to support people living in the community. "Everyone can be successful in the community," she said, adding that the state "should not be spending new dollars on an old system."

Romano also charged that meetings conducted by the Department of Human Services regarding LDC were "conducted behind closed doors" and objected to a facility that would serve only former LDC residents and families.

"Illinois spends the bulk of its resources on institutional care, and those with developmental disabilities who want to live in the community are often forced to go it alone. It's not fair," said Lester Pritchard, a task force member who is also disabled. Pritchard charged that legal criteria have not been met for opening another state care center. "No need assessment was made," he said.

A spokesman for Equip for Equality said the state-operated facility in Jacksonville has 72 open beds and could care for 40 people who would be housed in the new homes at LDC, he said. He also said there are 300 open beds in community group homes that could be used.

 

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Parents like Jody Hogan, however, said their children are so severely and profoundly disabled that community homes will not admit them. Hogan's daughter, the last resident to leave LDC, cannot speak, must be fed and cared for like a 6-month-old baby, and has frequent seizures. She is now living at home because no facility can care for her properly. "I'm 65 years old. I want to make sure her needs will be met after I'm gone. Lincoln could do it," Hogan said.

Behavior problems such as self-injury and aggression are also reasons some of the disabled need the structured care only available in a state facility, according to Marlene and Ronald Gregory. They said their son, who is bipolar, will be turned out of his current placement if he regresses again, and they are getting older and can no longer handle him at home.

Robert Springer said his daughter spent six months in a community-based home, which could not meet her needs. "It is a fallacy to believe the needs of every person with a developmental disability can be met in community facilities." He said the minority "should not impose its needs on the majority" and asked why advocates for community-based homes cannot accept that some people need the kind of care given in state-operated facilities.

"If we, the majority, feel the needs of our loved ones are best met in the congregate community, why should our wishes not be honored?" asked Pat Brown, also on the task force and parent of a former LDC resident. He said the severe and profoundly disabled are a minority, but with greater needs they need the greatest amount of resources.

"The crux of the matter is money," he said. "If there were enough to go around, to take care of all those with disabilities," the task force would be able to agree instead of being divided. "After 15 meetings we are still haranguing over the same stuff over and over again."

The task force has been working on the plan since July of last year but was still divided when the application to the Illinois Health Facilities Planning Board was finally submitted. Three task force members, representing organizations that advocate community placement, voted against the plan, while 19 members voted for it. Task force members include representatives of the American Federation of State, County and Municipal Employees; members of the Lincoln Parents Association; a former LDC client; Lincoln Mayor Beth Davis; state Sen. Larry Bomke; state Rep. Rich Brauer; former LDC administrator Martin Downs; Gene Frioli of the Logan-Mason Rehabilitation Center; and members of various state agencies.

Task force member Don Todd, a former LDC employee, said some in the group had hoped to reopen LDC as it was when the Gov. George Ryan closed it in 2002; then it had over 350 residents and about 700 employees. He said Carol Adams, the new DHS secretary, had a "different vision."

Speaking of the task force meetings, he said, "There were a small number of members who tried to obstruct our meetings and our work," he said. "The plan looks more like the plan of those who opposed it than like our original plan."

Anne Irving, director of public policy for AFSCME Council 31, told the audience that residents in state facilities are "generally there because they can't find placement elsewhere." Only 17 percent of the former LDC residents were moved to community care centers when LDC closed, and only 19 percent are in those centers today. Seven percent, 35 former LDC residents, are now deceased, which she called "a predicted outcome" because of the move.

She said the majority of LDC residents had to be moved to other state-operated institutions, farther away from their homes and guardians. "The closure did far more harm than ever thought possible," she said. Reopening a 40-bed unit at LDC "would be a small step in righting the injustice done to LDC by its closure."

The June 15-16 meeting of the Health Facilities Planning Board will be at the Holiday Inn City Center, 300 East Ohio St., Chicago, starting at 9 a.m. The public may still submit written comments to the board, but they must be received by May 27, a board representative said. Comments may be mailed to Health Facilities Planning Board, 525 W. Jefferson St., Springfield, IL 62761.

[Joan Crabb]

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