Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=106795
Story Retrieval Date: 9/17/2014 4:38:29 PM CST
Alison Flowers/MEDILL Photos courtesy of Sheltered Village, www.shelteredvillage.com
Photos courtesy of Sheltered Village, www.shelteredvillage.com
Stanley Ligas is a 41-year-old man with Down syndrome who now carries a special picture with him. But it’s not a photo of a family member or beloved pet. It’s a picture of himself in a week-old local news article about a class-action lawsuit in which he was a star.
Last Thursday, state of Illinois officials agreed to a settlement on the eve of trial for their alleged ongoing violation of civil rights of people with development disabilities. Now the care of nearly 6,000 individuals will be affected, though zero dollars in money damages were awarded.
“We were very careful when we filed this lawsuit to ask for what the law plainly and clearly required, nothing less, nothing more,” said trial attorney John Grossbart of Chicago-based Sonnenschein Nath & Rosenthal LLP.
What the law requires was established almost 10 years ago. The U.S. Supreme Court ruled in 1999 that unnecessary institutionalization of people with disabilities was discriminatory under the Americans with Disabilities Act. More than that, states had to give these individuals the choice of alternatives to institutional care with reasonable promptness, under the Social Security Act.
“It just wasn’t a reality here in Illinois,” said Barry Taylor, legal advocacy director for Equip for Equality, one of the agencies that initiated the case. “Those options weren’t provided in the past. People really had no choice.”
Illinois ranks 51st among all states and the District of Columbia in serving people with disabilities in small community settings, according to the American Association of Mental Retardation.
With the help of about 10 other attorneys, the ACLU, Equip for Equality and other advocacy organizations, Grossbart sued Illinois officials three years ago for failing to provide community services. The pro-bono case was one of the largest his firm has ever handled.
The agreement, which must still be approved by the presiding judge, will give Illinois six years to move developmentally disabled people to the most integrated community-based setting appropriate for their needs.
However, people who wish to stay at their institution will not have to move.
Nine plaintiffs were named in the case. They either live in private, state-funded institutions or are at risk of institutionalization. Stanley Ligas was at the top of list.
“I want to live with friends in a small house or apartment and have my own room,” Ligas said in 2005. “I can do a lot of things on my own, and I want to be able to cook for myself.”
Not only can Ligas read and work, but he can also do what many Americans cannot: balance his own checkbook.
Yet for 14 years, a 96-bed institution has been Ligas' home. Prior to that, he lived with his parents, who both passed away in 1993. Ligas lived with family members until he moved to his current residence, Sheltered Village in Woodstock, a community 60 miles northwest of Chicago.
“If you meet Stanley and talk to him, you are immediately struck by ‘why does this individual need to be here?’” said Grossbart.
Ligas proved his readiness to live in the community to a team at Sheltered Village four years ago after he advanced through the facility’s workshop program and held part-time employment.
Although his state-appointed agency was informed, the services he needs have only been offered in the institutional setting where he is now.
“There is no reason why he shouldn’t have a shower when he wants a shower. There’s no reason why he shouldn’t have a glass of milk when he wants a glass of milk,” said Grossbart. “The easiest things, the things we take for granted.”
According to its Web site, Sheltered Village is committed to helping each individual achieve the highest level of independence possible.
Bob Norris, administrator of the facility for four years, said the residents do have their own kitchen, but the size of the place and public health concerns mean they can’t get up in the middle of the night to get that glass of milk.
“I’ve got other people here who like the larger setting,” Norris added. “It’s a misconception that people in a large facility don’t get community integration.”
Norris cited that residents make use of local libraries and go out to restaurants.
A resident’s family member commended facility staff for its efforts in a letter posted on Sheltered Village’s Web site: “Over the past few years, I have seen Paul blossom into a happy, healthy and content human being. You have all given him a home and a beautiful ‘extended family.’”
But for Ligas’ sake and others who desire a different setting, Norris called the agreement a great thing.
And Norris has 34 years of perspective from working in the field. He was once responsible for closing large state institutions due to inadequate care.
“Over the years, a lot of people were falling through the cracks,” Norris said. “It’s a cost issue for the state of Illinois.”
He added he’s concerned that the money still won’t be available.
“What kind of money is the state of Illinois going to come up with?” Norris asked. “The state is five months behind in paying our facility. They owe us over a million dollars.”
For this fiscal year, $60.9 million was taken as cuts and reserves from services for people with developmental disabilities for this fiscal year, according to Matt Keppler, legislative director of the Illinois Association of Rehabilitation Facilities. Gov. Blagojevich has until Dec.5 to sign an appropriations bill that would restore some of the funding.
The governor’s office issued a press release regarding the settlement: “The agreement builds on the Blagojevich’s administration’s efforts to empower people living with disabilities by giving them the choice to live in the least restrictive settling and to reduce the number of people in institution in Illinois.”
Grossbart remains optimistic that the state will pull through.
“I think the mandates are characterized and spelled out in sufficient detail and sufficient certainty that they do the job,” he said.
One job to be done is moving 3,000 people off the state’s waiting list for care. About 15,000 adults and children compose a database of those in who have “Prioritization of Urgency of Need for Services.”
But Tom Green, a representative for the Illinois Department of Human Services, said not all 15,000 of those in the database are awaiting care.
Within two years, Ligas believes he will enter a small group home. This is realistic, according to Norris.
“He’s very excited,” Norris added.
There’s no telling how long Ligas will carry that newspaper clipping around Sheltered Village.
But his story is not about bragging rights.
“This is a case of civil rights, and civil rights won,” Grossbart said.