Institutionalized man wages long fight for independence

A civil rights lawsuit on behalf of Illinois adults with developmental disabilities is winding through the federal court system in a complex case that involves millions of dollars, hundreds of jobs, thousands of people, unions, the usual political disputes, four years of legal finagling and lifetimes of emotions.

Yet, it can be summed up eloquently in a few words by one of its plaintiffs, David Cicarelli, 35, who lives with 96 other mentally impaired adults in the Riverside Foundation in Lincolnshire. Cicarelli is in good health, and says the people at Riverside treat him well and give him a job at a workshop in Vernon Hills. So why is he suing for the right to live outside the institution where he's been since 1997?

"I don't want to eat supper at 4:45 every day. I like to pick my own time to eat supper," says Cicarelli, whose parents live in Arlington Heights. "The state picks the time for you. If I lived on my own, I'd pick my own times, not the state. The state decides for us what we eat and don't eat."

Cicarelli, who has a below-average IQ and doesn't read, has been on waiting lists for more intimate housing in the community for more than a dozen years, says his mother, Juli Cicarelli.

"We used to live in Ohio and New York where they have these community settings where people live in homes and it's cheaper," Juli Cicarelli says. But she and her husband, James, can't find that in Illinois.

"Illinois has fallen far behind the rest of the country in providing community services and supports for people with developmental disabilities and their families," concludes a 2006 study that ranked Illinois 51st, behind all other states and the District of Columbia.

"The goal of the lawsuit is to provide a choice in Illinois that currently doesn't exist," says attorney Barry C. Taylor, legal advocacy director of Equip for Equality, a not-for-profit agency that advocates for people with disabilities. "Everybody wants to make choices in their own lives. That holds true for people with developmental disabilities as well."

Lawyers from Equip for Equality, the American Civil Liberties Union, Access Living of Metropolitan Chicago, the Public Interest Law Center of Philadelphia and a pro-bono team from the law firm of Sonnenschein, Nath and Rosenthal thought they had negotiated an agreement last fall, but their class-action suit was deemed too broad. So they filed a second amended complaint this week on behalf of people who don't want to live in large institutions.

"There's too much stuff to bring to court, and I get frustrated," David Cicarelli admits. "They had all these papers, these files. It's too much. I'm just tired of waiting."

A decade ago, the Supreme Court ruled it illegal under the Americans with Disabilities Act to segregate people who don't need to be institutionalized, Taylor says.

"The state is working to move toward providing community living for people with disabilities," says Tom Green, spokesman for the Illinois Department of Human Services. "It is an overall goal of the Department of Human Services to place more people into the community."

Gov. Patrick J. Quinn has ordered the April closing of the Howe Developmental Center in Tinley Park after a report found the institution, which houses 265 residents, has been decertified twice and ineligible for matching federal money, essentially robbing the state of $73,000 a day that could be spent on other housing options.

"It's an underfunded, antiquated system we're in," says Peter Mulé, Riverside's executive director and a longtime advocate for people with disabilities. "It's like we got stuck somewhere in the '90s."

If there were a small home in the community for David Cicarelli and a roommate or two, "we'd discharge him in a heartbeat," Mulé says. "We have a group of individuals who could live in less-restrictive settings."

Meanwhile, private institutions such as Riverside have long waiting lists, and that doesn't even include many more people who might be homeless or depending on elderly parents who won't always been around to provide that care, Mulé warns.

Illinois has yet to join the 21st Century when it comes to caring for people with disabilities, but David Cicarelli is preparing for that day.

"I'd like to live in regular housing better. I'd like to live close to my parents," he begins. He says he wants to come home from a job, turn on his TV and watch whatever show comes on after "Batman" instead of having to take part in scheduled activities at an institution. He says he wants to have a phone in his room, and maybe keep the lights on past 10:15 p.m. He says he wants to have "an alarm if the burglars came in." He says he'd like to live in a place without housekeepers because "I'd like to vacuum." And, of course-

"I'd like to pick my own time to eat supper," Cicarelli says, his broad smile erupting into a giggle. "If I had my own house, I could cook me a pizza."