Norman Benz, 66, is terminally ill with cancer, but that’s not what he’s worried about.
He wonders what will happen to his 40-year-old daughter, Darlene, who is profoundly mentally disabled. “I don’t want her in a large institutional setting. I’m trying to find a community setting or a group home for her,” said Benz, of Olympia Fields. “I’m told I won’t be here in a year. And as a parent, you’re faced with this.”
The best he can do is put her name on a waiting list, he said.
The waiting-list crisis was the main concern for more than 180 parents, people with disabilities, state agency representatives and local legislators attending a three-hour public forum Saturday afternoon in Orland Park.
“It seems like to get attention in Illinois, you have to have a crisis,” said Dick Bell of Advocates United, one of 37 organizations that sponsored Saturday’s forum. “Well, this has been a quiet crisis for years.”
One by one, people testified about families desperate for assistance to partially relieve their financial and emotional burdens. All are concerned that state financial support for these kinds of programs is slowly drying up.
“We are all standing together and we are asking for help,” said Russ Collins, president of Advocates United, a 4-year-old Joliet-based organization. “There are thousands living in our communities that are seeking help to live as productive citizens.”
Waiting lists are growing for group homes, supported-employment opportunities, supportive living situations and other community-based programs, Collins said.
The proposed 1996 budget features a 7 percent increase for the Department of Mental Health and Development Disabilities, said Lynn Handy, the department’s deputy director. However, the additional funds will only cover the increased cost of maintaining existing programs.
Of the department’s total $1.1 billion budget, more than half is allocated to community-based programming, which reflects the trend away from institutional care, Handy said.
The change is considered not only better for the patient but also more economical. Providing services to patients in one of the state’s 21 facilities costs about $70,000 annually, compared with $45,000 through community-integrated programs, she said.
Meyer Mental Health Center in Decatur is due to close by December 1995 and be converted to a state correctional facility, and Kiley Developmental Center in Waukegan is slated to close by June 1997, Handy said.
Downsizing also is planned at other facilities, including Tinley Park Mental Health Center, one of the facilities in the state’s Region Six, which is made up of Will, Grundy, Kankakee, DuPage and south suburban Cook Counties.
But community-based programs are still in short supply. “There are thousands of people with disabilities in nursing homes,” said one woman in a wheelchair. “They’re there because they cannot afford to live in their own communities.”
State Rep. Philip Novak (D-Kankakee) urged audience members to write their legislators to push for increased mental health spending for the area. “Region Six gets less than other regions of the state,” he said, noting that the area’s population growth should justify more state dollars.
“The general public does not realize the plight of the handicapped,” said the mother of a developmentally disabled youngster. She cited the lack of transportation for the disabled, and the shortage of home services and programming.
“It’s not a pleasant situation,” said Audrey McCrimon, director of the state Department of Rehabilitation Services. “We’re not always able to respond to what the community needs.”
