In many ways, the life of Janet Bernas is unremarkable. She lives alone in a studio apartment in Evanston. She has a job packing things, such as candles and glasses, in boxes. Every so often, she stays in a hotel when traveling. It’s one of her favorite things to do because the rooms are so “nice.”
The fact that so much of Bernas’ life is unremarkable, so ordinary, is what makes her remarkable. Bernas is developmentally disabled. So living alone in an apartment and holding down a job are major accomplishments for her. “I used to live in a bigger place where I had roommates. But I like being here by myself,” Bernas says about taking the big step of living in her very own apartment.
Bernas also represents a trend in housing: Developmentally disabled people are being moved from large institutions into small group homes or apartments. A few may live together, just regular roommates. Or a developmentally disabled person might live alone. They have jobs. They buy groceries at the local supermarket. They visit their neighbors. In short, they’re a lot like everybody else. They blend in.
“The trend is to keep people in their communities near their friends and families,” says Doreen Croser, executive director of the American Association on Retardation in Washington, D.C. “The idea is to take the mentally retarded out of these large institutions, which were little more than human warehouses.”
The homes in which many of the developmentally disabled live today are no different from any other kind of home. Some are single-family houses in quiet residential neighborhoods. These are so-called group homes. Several residents share the house, but each person has his or her own bedroom.
Nowadays, the developmentally disabled also live in ordinary apartments with ordinary neighbors. Another variation is a small apartment building occupied by people with similar disabilities.
In Illinois, about 3,000 developmentally disabled people now live in small residential settings. About 3,600 are in state-run institutions. Another 7,000 live in so-called intermediate-care facilities, which are not state-operated.
Generally, the small homes or apartments are owned by social service agencies, which help the disabled person with things such as shopping, bookkeeping or transportation. The kind of services provided depends on the person’s disability.
“We find out the level of support the person needs to make it work,” says Anne M. Shannon, president and chief executive of Parc, a social-service agency in Westchester that operates 13 group homes for the developmentally disabled.
Shannon says the idea works well. Her own son has Down’s syndrome and currently lives in a regular dorm while attending school at the University of Wisconsin, Oshkosh.
“These people are just like the rest of us; they just want to belong,” she says.
Experts are quick to point out, however, that people with mental disabilities–what some used to call slow–should not be confused with the mentally ill, some of whom exhibit peculiar or possibly threatening behavior.
“With mental illness, the psychiatric community has placed its faith in curative drugs. We don’t give mentally retarded people a pill and say you are normal. We expect to follow them and support them,” says David Braddock, a professor of human development and director of the Institute on Disability and Human Development at the University of Illinois at Chicago.
Clearly, the trend to deinstitutionalize the developmentally disabled is well underway. But, for years, the prevailing assumption was that such people should be segregated and put together in large buildings where they could be cared for.
The nation’s institutional population peaked at about 200,000 in 1967, according to Braddock, who is writing a book on the state of care for the developmentally disabled.
In Illinois, the largest institutions were in Lincoln and Dixon.
“You ended up with 4,000 people crammed together in facilities meant for one-third that number. There were unlicensed physicians, disease and every once in awhile someone might come in and test a new drug on you,” says Braddock. (Lincoln has reduced its population to 446 residents, while the facility at Dixon has been converted into a prison.)
It was hard on families, too.
Mary Kopec remembers riding a bus sponsored by residents’ parents on the third Saturday of every month to see her niece in Lincoln.
“It was difficult,” Kopec says, preferring not to elaborate because she doesn’t like to complain and it wasn’t all “sorrow.”
Eventually, parents and politicians decided things had to be better, according to Braddock. That’s when facilities like the Lambs Farm in Libertyville and Misericordia in Chicago were built. Local families then at least had the chance to have their relative live nearby.
But, “it was the same institutional model, just smaller,” says Braddock about the complexes, which now house about 500 residents each.
In the 1960s, though, attitudes started to really change. President John F. Kennedy appointed a panel to develop solutions to the problem of mental retardation.
Legislation followed–along with a flood of money from the federal government–that altered how the developmentally disabled were treated. In short, the idea was to bring them back into the community.
Gradually, that has happened. Though Illinois has been slow to move mentally disabled citizens out of large institutions, says Braddock, a few states, such as Maine and Vermont, are institution-free.
The transfer of residents to traditional living arrangements is typically uneventful, just another move.
The Chicago Association for Retarded Citizens (CARC) closed a facility in 1996 and moved the 36 residents into smaller group homes. The organization purchased three houses on Chicago’s South Side, now shared by 22 residents.
“This is a positive move for the people,” says Linda Gustafson, division director of community living at CARC. “It gives people a sense of accomplishment.”
Mandola Pittman lives in one of the houses. She has two roommates, but has her own bedroom.
“It’s nice here. I like having my own rooms. I like being able to go to the grocery store,” she says.
Gustafson says residents for the first time in their lives have some say in the room they want and how it should be decorated. They also have the chance to cook, buy groceries and watch TV in their own rooms.
Kopec says the change in her niece, whose IQ is 54, has been “phenomenal” since she moved into an ordinary house in Park Ridge.
“She has her own bedroom. It is gorgeous. It is long overdue. It has opened a whole new life for her,” she says.
The biggest difference, Kopec says, is that her niece has activities of her own. Previously, visits at the institution would end tearfully with her niece begging Kopec not to leave.
On a recent visit to the new house, though, Kopec says her niece was busy getting ready to see the musical “Hello Dolly.” Her niece wasn’t at all anxious about the end of the visit.
“I waited 28 years for that,” Kopec says. And Kopec sounds like any proud relative when she tells that her niece won the home’s congenial spirit award last year because she loves to socialize and doesn’t gossip. The plaque now hangs on her niece’s bedroom wall.
Social service agencies generally help link residents to the community. Residents join churches, volunteer at local senior citizen centers. Sometimes it’s as simple as getting to know their neighbors.
“Paid support staff is desirable, but we also want natural supports. That’s how people become connected to the community,” says William Murphy, president of The Ray Graham Association for People with Disabilities, in Downers Grove.
Besides providing support for residents, social service agencies are responsible for scouting good properties. Simple houses without many steps and a handful of bedrooms work best.
The houses must be located near public transportation and, ideally, a park. The purchase price has to be somewhat reasonable so residents can afford to live there.
The Ray Graham Association owns several condominiums. It also rents homes and apartments for the developmentally disabled. Murphy says he is currently looking for a single-family home in the Addison area with three to four bedrooms. He has about $200,000 to spend, which he worries may not be enough for a really good house.
Social service agency Anixter Center, Chicago, owns 16 buildings, mostly apartments, which house 200 people.
Several years ago the agency built Dobson House, a three-story apartment building on the border between Chicago and Evanston. Project architect Fritz Biederman of Lisec & Biederman, Chicago, designed a building to encourage independent living, so the apartments are separate units.
The exterior blends with the other nearby small apartment buildings. But other than looking a bit new, it doesn’t stand out. Inside, though, there are some differences. Because some residents are wheelchair bound, counters and windows are low.
“Every unit is fully accessible,” says Biederman.
Though Chicago-area social service agencies report few complaints from neighbors, some people are still squeamish about living near the developmentally disabled.
When Avenues to Independence in Park Ridge planned a group home there, neighbors initially resisted the idea, says Bob Okazaki, executive director of the social-service agency.
Six months after the group home opened, the neighborhood held a block party. Residents of the group home were invited.
“I’ve had a couple of the neighbors call to tell me they made a mistake. With most group homes there is some apprehension, but once the neighbors get to know the people, they are just like anybody else,” Okazaki says.
The idea of moving the developmentally disabled into the community still has its critics, though. They say some people will always need a high level of nursing care because of other health problems or disabilities.
Braddock says there are strong economic interests in Illinois holding back the complete closing of big institutions. He says a lot of people depend on those facilities for jobs.
But Braddock believes the idea of integrating the developmentally disabled into communities will prevail because it is the right thing to do. He points to states that have no institutions and yet maintain all kinds of developmentally disabled people in family-like residential settings.
“It can be made to work,” he says.
