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
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
"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
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 1½-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.
[to top of second column in
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
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.
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.