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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] |
