Man with disabilities closer to freedom
On the verge of victory in a lingering civil rights suit seeking his freedom from a large institution, 37-year-old David Cicarelli knows one of the first things he'll bring when he finally gets to move into his new home in the suburbs.
“A punch bowl,” Cicarelli says, his smile quickly evolving into one of those laughs that makes everybody else smile as he ponders more possibilities. “I could make a cake.”
However he celebrates his newfound freedom will be up to him under a negotiated agreement going before a judge Thursday that would allow Cicarelli and other adults with developmental disabilities to leave large institutions and move into smaller homes if they desire.
“Everybody wants it to happen, but we don't want David to get all excited yet,” says Cicarelli's mother, Juli, who lives in Arlington Heights with her husband, James, and has been waiting years for Illinois to catch up. When they lived in New York and Ohio, the Cicarellis saw state programs that improved lives and saved money by letting adults with developmental disabilities live in group homes and other settings in communities. More than a decade ago, the U.S. Supreme Court cited the Americans with Disabilities Act in ruling it illegal to institutionalize people who didn't need such a confining environment.
David Cicarelli says the employees are nice and he is treated well at the Riverside Foundation in Lincolnshire, where he has lived with nearly 100 others since 1997. But he longs for more independence.
“Our time for supper is 4:45,” he says. “In this state we have, they pick our time for supper for us. I don't like these rules.”
In his role as legal advocacy director of Equip for Equality, a nonprofit agency that advocates for people with disabilities, attorney Barry C. Taylor has been working for years on this case.
“This agreement really allows everyone a choice,” says Taylor, noting that a team of attorneys from the American Civil Liberties Union, Access Living of Metropolitan Chicago and the law firm of SNR Denton negotiated the deal with the state,
“We're pleased that this agreement will enhance the housing options for adults with developmental disabilities who want to live in smaller community settings, while also assuring those who wish to live in larger residential facilities that their choices will be honored and their needs will continue to be met,” says Natalie Bauer, communications director for Illinois Attorney General Lisa Madigan.
“I think it's a huge step forward. The experience in other states shows (people with disabilities) do thrive in other settings,” says attorney John Grossbart, the managing partner of SNR Denton's Chicago office, which donated work on the case. Grossbart says the negotiated settlement adheres to federal law, makes sense and should save the state money in the long run.
Illinois, which ranked 51st behind every other state and the District of Columbia in a 2006 survey on development disability issues, has been moving toward a goal of transferring eligible and willing residents out of institutions that include services such as round-the-clock nursing care that people like Cicarelli, who has a below-average IQ but is healthy, don't need. Hundreds of the 6,000 people in institutions or the 3,000 more living with aging relatives may opt to move. For details, visit www.equipforequality.org.
David Cicarelli says a buddy, who lives in a group home run by the nonprofit Clearbrook agency, enjoys perks that aren't available in institutions.
“I want a kitten,” Cicarelli says, rattling off a list of other simple pleasures such as making his own pizza for dinner, choosing what color to paint his bedroom, deciding his own bedtime, cranking the volume on his music or TV programs such as “Sanford and Son,” grabbing a diet pop from a fridge instead of a vending machine or hoping his experience working every Sunday with young children at Countryside Church Unitarian Universalist in Palatine will lead to a job at a Chuck E. Cheese's.
The legal agreement gives residents six years to make the transition, but Cicarelli imagines what it would be like observe his 38th birthday on Sept. 25 in his own home, maybe even making his own birthday cake in his own kitchen.
“I'd celebrate it,” he says.
“Don't forget the punch bowl,” his mother says.
Cicarelli smiles and nods, “That, too.”