Close to 500 severely disabled Illinoisans are in danger of losing their homes because of last year’s budget cuts mandated by Gov. Pat Quinn. While the average American might not see how a state-run institution can be home, for close to 30,000 Americans, it is.
As the state closes institutions one by one, a battle is being waged between those who want to eliminate institutional living and those who feel it is the only viable option.
[pullquote]“It shouldn’t be institution versus mainstream, but how can we make mainstream better? How can we improve options for the developmentally disabled to become part of the community?” she asked.[/pullquote]
Quinn has been outspoken about his intentions to transition from institutional to community care, but some advocacy groups and state lawmakers question what that means. Jacksonville Developmental Center closed last year, and Murray Developmental Center is scheduled to close in October.
Rep. Charlie Meier (R-Okawville) sponsored a bill in hopes of slowing down Murray’s closure but the bill was buried in subcommittee in March.
The Department of Human Services is in charge of the transition of residents into community integrated living arrangements, commonly called CILA.
The homes can have up to eight residents with a mental illness or developmental disability and are strictly regulated by federal, state and local laws. CILA homes can have intermittent care or 24-hour care options, according to the Community Integrated Living Arrangements Licensure Act (CILA.)
About an hour south of Chicago, the Kankakee County Training Center for the Disabled, Inc. operates 10 CILA homes in Kankakee, Bradley and Bourbonnais. Anywhere from five to eight developmentally disabled live in each home with one to two full-time staff.
Staff member, Rosa Silva, took a ChicagoTalks reporter on a tour of one of the four-bedroom homes in Bradley. The words “Live, love, laugh” decorated the entryway wall.
Melvin, one of the eight residents who live in the home, wore a helmet while watching TV in the spacious living room. Silva showed us the room Melvin shares with another resident. She said he is prone to falling so his bed is equipped with a guardrail and his bathroom has handrails.
Roger Baldwin runs the CILA program for the Kankakee County Training Center. He said the house in Bradley is geared more towards patients with medical needs than the other homes run by the agency. The residents share the agency’s two full-time and one part-time nurse with the nine other homes. The house has a large bathroom with a medical grade tub.
Silva said the women in the house love their fancy tub and she treats them to spa days on the weekend complete with pedicures.
But arrangements like this don’t exist downstate yet, say concerned parents Rita Winkeler and Karen Kelly, who have adult children in Murray and are part of grassroots organization Murray Parents Association.
And Baldwin said he doesn’t think they’ll see any Murray residents next year when the institution closes because it’s too far and he rarely has openings.
In the five years he’s been at the agency, he’s seen one resident leave. Residents usually stay for life, he said.
Tony Paulauski, executive director of The ARC of Illinois, a nonprofit advocating for community living for the disabled. He said up to 70 CILA are being developed downstate.
“We’re way behind other states when it comes to community living. We rely way too much on warehousing people in institutions,” said Paulauski.
Fourteen states have already eliminated institutional living for the disabled, according to research done by the University of Colorado’s Coleman Institute for Cognitive Disabilities.
In Illinois, 34 percent of intellectually and developmentally disabled already live in CILA, group homes or apartments, according to the same report. In the United States, that number is closer to 95 percent.
Paulauski compared states that use institutions to outdated offices using typewriters instead of laptops. He predicts all institutions in the United States will close by 2025.
To Murray parents, it’s not about catching up to what other states are doing. Kelly, whose 39-year-old son has a severe form of autism, doesn’t think he would get the care he needs outside of the institution.
Michelle Reynolds manages eight CILA across the Southwest suburbs from Tinley Park to Oak Lawn. The homes are run by the nonprofit Park Lawn, an organization that has been working with the developmentally disabled since 1955.
Reynolds was forthright about the challenges CILA pose for certain families.
She said Park Lawn homes, which house up to six developmentally disabled, don’t house a lot of severely or profoundly disabled because those residents require 24-hour nursing. CILA are designed to focus on the individual, but they aren’t medically based, she said.
But often, the developmentally disabled also require medical care. Paulauski admitted that is one of the challenges Murray’s closure presents. Ninety percent of Murray residents use wheelchairs, he said, and many – like Rita Winkeler’s son – wear adult diapers.
The Kankakee County Training Center faces similar challenges. At times, the care needed by residents exceeds what the staff can give and he has to refer the resident to a nursing home, said Baldwin.
“Around-the-clock nursing care is a concern. We don’t have the funding capability for that,” he said.
The developmentally disabled community is also aging, increasing medical needs.
With a current life span of 66 years, those without severe impairment can be expected to have a lifespan equal to that of the general population in the future, according to research done by the University of Colorado’s Coleman Institute for Cognitive Disabilities.
Carol Gill is the director of Graduate Studies & PhD in Disabilities at the University of Illinois at Chicago and a clinical and research psychologist specializing in health and disability.
Gill thinks the wrong questions are being asked in this debate.
“It shouldn’t be institution versus mainstream, but how can we make mainstream better? How can we improve options for the developmentally disabled to become part of the community?” she asked.
Gill said she hasn’t heard a lot of positive feedback about institutional living from disabled residents who are able to speak for themselves, and she has seen many fight valiant battles to leave an institution, she said.
She sees society moving away from institutional living as it becomes more progressive.
“People with disabilities are now being viewed as citizens with a right to live in their community, and that’s progress,” she said.
Unfortunately, the funding isn’t there, said Gill. This is why the alternative to institutional living might look insufficient or unsafe to families, she said.
“Until the funding is there, a family member is forced to choose between imperfect choices and terrible choices,” said Gill, who sympathizes with family members of developmentally disabled.
“They’ve been given the institution as a choice, and now it’s being taken away. They feel like, ‘what do we have?’” said Gill, adding, “[CILA] are a good trend, but it has to be supported. We have a social contract to make community living a viable option.”
Reynolds, who has worked with the developmentally disabled for 28 years, agrees that funding is the biggest challenge. She said a lot of CILA closed with last year’s budget cuts.
“With the state of Illinois, it’s hard to get medical care for our individuals,” she said.
Which is exactly why parents like Kelly and Winkeler worry.