Judging by a slight smile that stays even as her eyes close and the snoring begins, Kathy likes the feel of sunlight on her face as she stis with her mother in a park near Jacksonville Developmental Center.She is 48 and began life with a cerebral hemorrhage, either before she was born or during delivery, says her mother, Sharon Pfeiffer. Kathy cannot walk and speaks only a few words. She is prone to pneumonia. A series of surgeries put her into a sitting position. A rod inserted in her spine counteracts scoliosis, her hands stay clenched. Nourishment comes via a feeding tube. She’s lived in state institutions since she was 10 years old and has called Jacksonville Developmental Center home since 2001.
Her future is uncertain.
The state wants to close Jacksonville Developmental Center by autumn, the first step in shutting down four of the state’s eight institutions for the developmentally disabled during the next three years. Gov. Pat Quinn wants 600 Illinoisans who are among the state’s most vulnerable citizens to move into the community instead of living in state-run centers. Possibilities include group homes or, perhaps, two or three developmentally disabled people living together in households with families.
“WE ARE IN SEARCH OF PEOPLE WHO WANT TO MAKE A DIFFERENCE IN SOMEONE’S LIFE!” screams a Springfield Craigslist advertisement placed by a company in search of “home care providers” willing to take in developmentally disabled adults and assist with hygiene, cooking, transportation and “life skills” in return for tax-free annual stipends. “We will provide all necessary training and support.”
The notion that state employees at institutions could be replaced by care providers recruited on Craigslist frightens some families.
“Without melo-dramatizing it, this will mean deaths and imprisonment and homelessness and so on,” says Kevin Burke, a member of the Illinois League of Advocates for the Developmentally Disabled, which opposes closing the institutions where folks like his son Brian live. “This plan is reckless. It cannot be emphasized enough how truly radical this is.”
Brian, 42, has lived in institutions since he was 15, first in Georgia, then in Illinois when he turned 21 and his parents went looking for a state that offered the best care available for adults with developmental disabilities. Four tries at living in the community didn’t work, according to Burke and his wife, Rita.
Brian, who lives at the Choate Developmental Center in Anna, is a nice guy most of the time, they say, with a compulsion to drink fluids, smoke cigarettes and make audio recordings of music. But he loses his temper for no apparent reason. He punches both people and windows, his parents say. While he was living at home, the Burkes say windows broken by Brian numbered in the hundreds.
“He would run across the room and break a window, afterward he would say ‘Why did I do that?’” Kevin Burke says. “Our son, if you put him in a home like the one behind you across the street, one of these days, he’s going to walk out the door and punch someone in the mouth.”
Brian’s siblings learned to hold him back when he flew into rages and, in the process, learned patience and empathy, his parents say. The Burkes say they tried everything, even forming a Boy Scout troop for Brian’s benefit before finally sending him to live in a place with employees paid to take care of him around the clock, someplace they consider safe.
The cash-strapped state says that closing institutions will save as much as $12 million a year. Math like that has parents like the Burkes suspicious. They say they don’t believe that the state can save money by putting folks like Brian in the community. In any case, they say, the state is treating people like their son more like numbers than human beings.
But some advocacy groups for the developmentally disabled applaud the planned closures.
“It’s not only a good idea, it’s really the way we should have been moving the system 20 years ago,” says Tony Paulauski, executive director of The Arc of Illinois, a Frankfort-based advocacy group. “My recommendation to the governor and his teams is to close all the institutions – we don’t need them anymore. … No fewer than 14 states have no institutions. In the next five years, probably half the states won’t have institutions.”
While the Burkes fret at ads on Craigslist for home care providers, Paulauski sees no problem.
“It is just an ad,” Paulauski says.
Ultimately, Paulauski says, families who have guardianship of people in institutions have the right to reject proposed alternative living arrangements.
“The family is going to have the choice about where the person is going to live and who’s going to work with them,” Paulauski says.
So far as Paulauski is concerned, institutions are confining places where the developmentally disabled live in isolation. It is better, he says, to have the developmentally disabled living throughout the state, close to families and friends and churches and ice cream parlors. Those who oppose closing developmental centers are using scare tactics, he says.
“I’ve seen this firsthand – I’ve seen people move out of institutions, and they’ve flourished,” Paulauski says. “The governor needs to be given an award for putting this process in place.”
But Pfeiffer says the state hasn’t made sufficient plans for Kathy and other folks who will have to move if the Jacksonville Developmental Center is closed.
“If it’s going to happen, they need to do it right,” Pfeiffer says. “I haven’t seen evidence that it’s going to be done right.”
Contact Bruce Rushton at firstname.lastname@example.org.