Students at the Illinois Center for Rehabilitation and Education roll down the tidy halls, greeting each other and showing off their customized wheelchairs as if they were luxury cars. A group of high schoolers, all severely disabled, chat as they wait to board a bus and go to the movies.
Only the sign on the wall shows these are not typical times at this school for the disabled: “This is our home,” the banner reads. “Leave us alone!”
The school is on Gov. George Ryan’s list of cuts as he works to slash about $500 million in spending to balance a $53 billion budget in the middle of an economic downturn. Other reductions will cut Medicaid payments to hospitals, shrink funds for substance-abuse programs and eliminate education programs for prisoners.
Officials at the Illinois Office of Rehabilitative Services say closing this West Side residential school, funded at $5 million a year, will save $2.5 million in fiscal year 2002, even though the state will still have to pay for the residents’ care elsewhere.
“I just wish the governor would come here and see how we live before he closes us down,” said Samantha Helgerson, who was born with cerebral palsy and who has lived at ICRE for seven of her 17 years. “He has never come in the time I’ve been here and he needs to see why we are here.”
Many of the 50 severely disabled students at ICRE fear the closing will deprive them of the support network that has helped them survive and work toward their goal of independent living.
“Before I came here, I lived with my parents, went to special ed classes in the morning, what they called `normal’ 3rd-grade class in the afternoon, then I’d go home, go to bed and wake up and do it all over again,” Helgerson said.
“I didn’t know what people in wheelchairs were like, beside me. Now there’s a person here who is my very best friend in the whole world. We talk about guys, school, stuff that’s going on with our families. We regard each other as sisters.”
Even some advocacy groups opposed to large institutions say they don’t like the way the state is shutting down ICRE. The center could close as early as January, but the state has yet to present a plan for the care of the students, ages 7 to 23.
The other options
Illinois officials said that a state review team will be discussing options for each student. They include home care, in which a private-agency personal assistant would come to the home to care for the student, and group home care, in which students would live together in a smaller institutionalized setting. The least desirable option, nursing home care, has not been ruled out, staffers said.
Those unfamiliar with the state of care for the severely disabled might be shocked at just how much the inside of ICRE’s 101,000-square-foot, three-story building resembles a pleasant, modern school and how little it looks like the stereotypical depressing images of institutionalized care.
Samantha, her schoolmates, teachers and therapists go shopping, horseback riding and swimming as part of the curriculum and physical therapy. Her family is among those at the school who fear their children will become shut-ins when ICRE closes.
“What they do at the school is more than I could ever think about doing for her,” said Samantha’s father. “I’m a single parent, I live in a third-floor apartment with no elevator and I don’t even have a vehicle that is handicap-accessible right now. And she’s a typical teenager. She needs to get out and learn what she needs to know to survive in the world.”
What is not at issue in the closing of the school is the success of its graduates. At 23, Chris Lake has just signed the lease on an apartment–no small feat, considering Lake has been able to eat solid foods for only the last two years. He arrived at ICRE in 1988 paralyzed from the neck down, unable to speak and disconnected from the rest of the world after contracting encephalitis at the age of 8.
Since then, he has received a regular public school education and physical rehabilitation, and through specialized training in and out of the classroom has learned the mammoth and minute skills necessary to navigate life on his own in a customized wheelchair.
“I have mixed emotions,” Lake indicated, slowly lifting and swinging his arms and fingers to get enough control over spastic muscles to spell out words on a communication board. “I feel great about moving out. But I feel sick about Mr. [Charles] Martin’s decision to shut the place down.”
Martin, head of the state’s rehabilitative services, held a meeting earlier this month with ICRE families at which several students argued that the options presented would not move them toward independence.
`Not an easy decision’
“It was strictly for budget reasons,” said Reginald Marsh, spokesman for the Department of Human Services. “It was not an easy decision to make, but we’re trying to plug a $500 million hole. Every [state] agency had to come up with reductions and this was it for us.”
In addition to frequent field trips, most of the students leave the school at 1950 W. Roosevelt Rd. for some part of the day to attend classes at a regular Chicago public school.
In the residential areas, semiprivate and private rooms have all the comforts of a fully loaded dorm room, with radios, TVs, refrigerators, microwaves and fish tanks, all in a wheelchair-accessible space.
“One of the great things about working here is that it’s not a place where you walk in and say: `Aw, look at all the handicapped people. Don’t you feel sorry for them?'” said Barb Robinson, a speech therapist at the center for more than 30 years.
Diane Coleman, executive director of Progress Center for Independent Living, a non-profit organization for people with disabilities, said what the state is doing in shutting ICRE is “dumping” the students into the community.
“It’s absolutely true that the money spent on large institutions in Illinois can be redirected to other agencies and services in the community,” said Coleman. “But dumping these kids isn’t going to cut it. It’s not right. Some of these kids really do experience the benefits of being with each other and that takes planning to find the right setting and make the transition. This is not planning. This is dumping. The state needs to listen to these kids.”
Parents said their children were referred to ICRE because their particular needs could not be met through services available elsewhere.
About half the students at the school have a primary diagnosis of cerebral palsy, some also with spina bifida. The other half of the student population has had some brain or spinal cord injury. Almost all students move about the school in wheelchairs.
Home care for many of the students is not a viable option, parents said.
“You want to talk about home care?” said Irene Forsythe, whose son, Roy Mazuchowski, 20, attended the school before starting classes in August at Southern Illinois University. “Been there, done that. Many of these so-called personal assistants who came to my house to care for my son were either stoned or drunk and many times they didn’t even show up. For $5, $6 or $7 an hour, which is what they pay these people, this is what you’re going to get much of the time.”
Communication difficulties
Among the residents at the school is the teenager known as Girl X, who was referred to ICRE after she was brutally attacked in a Cabrini Green high-rise and left unable to walk or speak. She and Lake are among about 25 percent of the students who have disabilities that prevent them from speaking, so they communicate by computer, communication board or by using the eye and facial movements taught at the school.
“When you’re talking about integration into school and the disabled, you’re talking about the students who can push themselves [in a wheelchair] and who can talk by themselves,” said Lake, in such an exhaustive effort that sweat plasters his red hair to freckles on his forehead as he spells out words. “Students who can push and talk, they can go out into the community. We [students who can’t push or talk] don’t have that, so we need this place.”
