Tuesday, June 15

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New LDC plans go before planning board for approval     Send a link to a friend

[JUNE 15, 2004]  Question has continued as to whether the Lincoln Developmental Center will open its doors again to the disabled patrons it once housed. Task force members have toiled for a year to meld ideas about handicapped care. Their final plan calls for cottages that will house a total of 40 residents. The residents who inhabit those cottages will be selected from those who would like to come back. The cottages are to be built on the current grounds.

A critical step in that process takes place today. The new LDC proposal will come before the Illinois Health Facilities Planning Board. This is the group that grants approval to open or close a health care facility. It was their decision Aug 15 two years ago that closed the state-run institution two weeks later, on Aug 31, 2002.

Parents and guardians of past residents continue to hope to bring their children back to Lincoln.

Linda Brown and husband Pat, co-presidents of Lincoln Developmental Center Parents Association, serve on the task force that the state formed at the direction of new Gov. Rod Blagojevich to open the facility again.

Linda Brown says that from the very beginning they have battled those who are fighting for people with disabilities versus their own children who have profound disabilities. There is a difference. "We're supposed to see their side, and I do see their side. I wish my son could live in the community."

The Browns tried it for 12 years. During that time their son was almost killed three times. "He cannot live in the community," she said. They are very sympathetic to the needs of advocates for community-based living, but those advocates cannot see that other children need the type of care that they are getting.

"They say it's not about money, but it is," Brown says. "It's about the type of care that our kids get." At every meeting they [community-living advocates] have created a stall tactic.

Parents of profoundly disabled children are hurt when the advocates say they would never put their children in a state-run facility. Linda Brown says that her severe-profoundly disabled son is like a 1-year-old in some ways. Like other parents she remembers thinking that as her son grew older he would get better. But in this situation they don't, she said.

Brown said she had doubts early on because she had never been to an institution. These people who have never been to an institution have no idea what they are talking about when they say that our children are warehoused and not able to be a part of the community, she said.

The Browns made the decision to take their son, Jeff, to Lincoln in September of 1997. The MARC Center in Bloomington was unable to take care of him. He had been put isolation because he could not get along with others.

When she went to visit LDC, she said she couldn't believe what she saw: beautiful campus, nice people. It's not a prison, they're not warehoused, they have friends, she said. Residents were in Special Olympics and they went on outings. It took their son about six months to adjust.

He's in Jacksonville now, and like when he was in Lincoln, he prefers to stay there rather than come home. He's with friends, he has his freedom, and it's not true that they're locked up. "He's happy," she said.

Why these advocates tend to fight the minority, Brown doesn't understand. "We're the parents, we understand our own child, and they tell us that we don't."

The reason we're getting this chance to open it back up is because of Sen. Bomke and the governor, she said.

 

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There are 90-some families in central Illinois that had a loved one at LDC

In a survey that was conducted to see who would bring their child back to Lincoln, there were about 45 yeses and 30-some maybes. Some who were moved closer to their families and have made the adjustments are willing to stay where they were transferred; others were moved farther and need LDC reopened.

Parent and task force member Pat Brown agrees that the advocates have been trying to stall. "They've been stalling from the get-go." As a subgroup in the main body, Brown says, "We will never be able to out-shout, out-petition, outmaneuver those that are opposed to the reopening of Lincoln. But we are the ones that have the greatest need."

So, it is kind of a tough situation to be in, he said. But they just hope the governor and Dr. Adams and DHS will work on it and try to strike a balance.

He said they empathize with the petition (a petition was presented at the task force meeting last Thursday against the new LDC plan to build cottages on the LDC grounds). They realize there is a shortage of money and resources needed to take care of the requirements.

But again, our children who were served by Lincoln have the greatest need, he said. They are the severe and the profound. So no matter what setting you place them in, they're still going to need a great deal of resources. From our viewpoint that's the argument, he said.

They'll challenge us on the type of setting and how many should live in a home, but it really boils down to the money, he said. They think that they can take some of that money that will be spent on our loved ones and it will flow into their area of need. We always try to stress "grow the pie if at all possible" instead of cutting it up into different-sized pieces. Restructure the way that the monies are dispersed as far as getting the best bang for the buck.

One manner that this could be achieved is to offer specialized handicapped services on the campus. The centrally located campus is ideally situated. Services specifically targeted are dental care, respite and crisis care, and a training center for doctors for the handicapped. These services could serve the residents, the local population and the state at large.

There are 40 people who would like to have their loved ones come back and live in at LDC. They do not have any problem with the proposed structures. Brown compares the handicapped-living settings to the variety of senior living settings, saying that what may not be for all seniors does work for some; they choose to live there. "Our choice is that we want our loved ones to live at Lincoln," he said. They (opposing advocates) want to take the choice away.

The Illinois Health Facilities Planning Board meets today (Tuesday) and tomorrow. If the board sees the need for residence at Lincoln for these handicapped, the board will approve the new plan. Then bids will go out and building can begin. According to Sen. Larry Bomke, the House has money in the budget for LDC.

[Jan Youngquist]

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