Greg is 48 years old, but his brain and his body function like those of a child. And like most people in Illinois with such profound disabilities, Greg lived inside a large institution 10 years ago. But the downstate hospital where Greg was living gave the Quaini family a new option: Greg could move into a place more like an everyday home.
Greg would stay in a duplex on a residential street in Dwight with seven other people with disabilities and aides would help them with their everyday needs. This is what's known as a Community Integrated Living Arrangement.
Quaini and his wife, Chris, hesitated before moving Greg.
"We swallowed hard," Quaini said.
He said he knew how disruptive change can be for his son. Besides, Quaini said he believed that Greg's hospital was "very well run."
But this new home seemed like it was too good of an opportunity to pass up, so they agreed to move Greg.
A decade later, they're glad they did.
"Even someone as profoundly disabled as Greg gets out into the community much more and is able to derive some pleasure — at least we hope he is — from the interactions in the community," Quaini said. "He goes to a school five days a week, where he performs some quite basic tasks. He goes out for meals. He goes out for festivals. He goes out to the doctor, the dentist. He goes to a summer camp, which is a really marvelous experience for him. He's in the outdoors.
"Those are terrific opportunities for a kid who can't walk, can't talk. If he didn't have those, the lack of stimulus would be a detriment. Getting the stimulus of the community, we think, has made him happier."
Quaini, who is board chairman of Equip for Equality, said he believes other people with developmental disabilities in Illinois should get the same chances as Greg.
"Chris and I were fortunate that we were able to get Greg into a community-living situation nearly 10 years ago," Quaini said. "But that option hasn't been available in Illinois in all but the most unusual cases. We were one of those unusual cases."
That will change because Equip for Equality recently won a victory in federal court this summer: A consent decree will force Illinois to give people with developmental disabilities the option of living in a smaller home in the community, rather than a hospital or institution.
"What we're talking about is choice," said Quaini, who is retired from his former role as chairman of Sonnenschein Nath & Rosenthal, which is now called SNR Denton.
Equip for Equality couldn't accomplish everything it does without help from lawyers. Chicago's legal community plays a critical role in helping Equip for Equality raise money, win courtroom battles and resolve disputes between school districts and parents of special education students. The group said it receives between $2 million and $4.5 million in donated legal services each year.
In the news
Equip for Equality is an independent, private, not-for-profit organization, but it functions at times like a governmental agency.
It has the power to inspect institutions and investigate deaths. It gained this status in 1985, under a federal law creating independent agencies in each state to protect the rights of those with disabilities — the Protection and Advocacy System.
"We're unusual because we're a private nonprofit, but we have governmental powers," said Zena N. Naiditch, president and CEO of Equip for Equality. "We're basically a legal advocate and a watchdog over the public and private system."
Equip for Equality has been in the legal news a lot lately with class-action lawsuits and impressive fundraising campaigns.
"They're everywhere. They're legislating. They're litigating. They're creating educational programs. Their reach is amazing," said Renee Zipprich, a partner at Dykema who has raised money for the group, including about $200,000 in unclaimed cy près money from two class-action lawsuits. "I'm just awed by how hard these people work."
One of Equip for Equality's most important court cases was Ligas et al v. Maram (now Ligas v. Hamos).
The named plaintiffs were several people with developmental disabilities who lived in large, private, state-funded institutions — or were at risk of being placed in such facilities. Their families wanted them to live in smaller, community homes similar to the one where Quaini's son lives. The state denied their requests, so Equip for Equality sued state officials on their behalf.
"When you're in an institution, that takes away a lot of your rights," said Barry C. Taylor, Equip for Equality's legal advocacy director. "Most adults don't want to be told when they eat, what to eat, what activities they have each day. Because it's such a large place, you have to follow the structure that's there."
Pursuing a class-action lawsuit of this magnitude was too much for Equip for Equality's legal staff to handle on its own, Taylor said.
"These cases are very complex and challenging and they're pretty impossible to do without the resources of a law firm," he said.
As it happened, John Grossbart, then a partner at Sonnenschein, wanted to get his hands on a major pro bono case.
Most of the pro bono opportunities he'd been hearing about were small matters. Grossbart said he wanted to do something more substantial, something similar to the work he did defending corporations against class-action lawsuits. And he was willing to devote a lot of time. That's when he heard about Equip for Equality.
"They told me about the frustrations they were having with the state of Illinois and its foot-dragging, for lack of a better word, on the Americans With Disabilities Act," said Grossbart, now managing partner of SNR Denton's Chicago office.
With Grossbart spearheading the litigation, Equip for Equality filed a complaint in the U.S. District Court for the Northern District of Illinois in 2005. The lawsuit accused state officials of running "an antiquated system for serving people with developmental disabilities that relies heavily on large public and private institutions."
Grossbart and Equip for Equality had a U.S. Supreme Court ruling on their side. In the 1999 Olmstead decision, the nation's highest court said, "unjustified institutional isolation of persons with disabilities is a form of discrimination." But it was not an easy matter figuring out how to apply it to the situation in Illinois. The lawsuit stretched on for six years.
Throughout that time, Grossbart's firm had a team of three to five lawyers working on the case. Grossbart got to know some of the plaintiffs he represented — including Stanley Ligas, a man with Down syndrome who lives in a 96-bed facility in Woodstock; and David Cicarelli, a man with moderate mental retardation who lives in a 96-bed facility in Lincolnshire — as well as their families.
"On an emotional level, it brings home the importance of what we were doing," Grossbart said. "You hear these individuals talk about how they wish their life was different in ways that you and I take for granted. If you want to get up in the middle of the night and have a cookie and a glass of milk, that's not a production for you and me. It is for them. If you want to have a pet, if you want to walk about the block — the littlest things."
This June, Chief U.S. District Judge James F. Holderman approved a consent decree signed by all of the parties in the Ligas case. About 6,000 residents of large institutions (formally called intermediate care facilities for the developmentally disabled) will get the choice to move into smaller community homes.
Similar services will be offered to another 3,000 people with developmental disabilities who now live with their families. The state is working on its plan for making these changes, which will be overseen by the court.
According to the "State of the States in Developmental Disabilities 2011" report, Mississippi is the only state where a lower percentage of people with disabilities live in community settings rather than institutions.
"I think (Illinois) invested so heavily in these larger facilities and we just haven't moved away from that type of setting very rapidly," said Mary Kay Rizzolo, associate director of the Institute on Disability and Human Development at the University of Illinois at Chicago.
Rizzolo praised Equip for Equality for pushing Illinois to change.
"Equip has been a tremendous advocacy group, fighting to allow people options about where they want to live," she said.
The state government now said it agrees with the direction it is being pushed by the Ligas lawsuit.
"The governor believes in community care and it is the long-term goal of the administration to move more people into community-based care," Illinois Department of Human Services spokesman Januari Smith Trader wrote in an e-mail responding to Chicago Lawyer's questions.
"The state is pleased with the settlement, which will open up more community-based care options for people with disabilities who choose it. We want to thank everyone who came together to put the needs of people with disabilities first." And she said, "Studies show that community care is less expensive than state-operated centers."
The battles continue
The Ligas lawsuit was one of three similar class actions Equip for Equality pursued in federal court with the American Civil Liberties Union of Illinois and Access Living taking the lead role in the other two cases.
Similar consent decrees were reached in Williams v. Quinn, on behalf of people with mental illness living in large, private, state-funded facilities; and Colbert v. Quinn on behalf of people with disabilities living in nursing homes in Cook County.
Equip for Equality has two more class-action lawsuits making their way through the courts now.
Rasho v. Walkertargets the Illinois prison system for the way it handles mentally ill prisoners. The complaint accuses the prisons of providing "grossly inadequate treatment, erratic and inconsistent treatment, punitive treatment or no treatment at all."
The Chicago offices of SNR Denton and Mayer Brown are working pro bono on the case, and the Uptown People's Law Center is also participating. The two sides must now wait while an independent expert examines how the mentally ill are treated in the Illinois Department of Corrections, Taylor said.
The other pending case, Holmes v. Godinez, accuses the Department of Corrections of failing to provide accommodations to deaf and hard-of-hearing prisoners.
The lawsuit, which Equip for Equality filed in May together with the Uptown People's Law Center and the National Association of the Deaf, claims that prisoners have gone hungry and missed out on crucial visitors because they could not hear announcements. Deaf prisoners are also sometimes unaware of vital warnings such as fire alarms or warning shots, the lawsuit says. Winston & Strawn is doing pro bono work as lead counsel.
The federal courts aren't the only legal realm where Equip for Equality is standing up for the rights of those with disabilities.
Five years ago, the group launched the Special Education Clinic, which helps parents make sure their children are getting the kind of education and school services that are required by law.
{photo: Zena N. Naiditch, the founder, president and CEO of Equip for Equality, shared a laugh with Jamie McElroy (center) and attorney Barry G. Lowy at a reception before an Equip for Equality dinner on Nov. 17.
Photo by Ralph Greenslade}
"We saw a lot of demand for special education (legal help) and not a lot of people doing it — and a lot of parents who can't afford the retainers of $300-an-hour lawyers," Naiditch said. "So with a lot of people, the issues just go unresolved."
The clinic's cornerstone is a help line, which received almost 900 phone calls last year.
"It's really a great place for parents to call for information about their legal rights," said Olga F. Pribyl, a managing attorney at Equip for Equality who runs the clinic.
Equip for Equality said a discussion over the phone is all that's needed about 60 percent of the time. In other cases, Equip for Equality sends its staff lawyers or pro bono lawyers from Chicago firms to represent parents at administrative hearings.
"With the sheer volume of the calls that we get … we can't represent that number of families," said Pribyl, whose clinic has seven staff attorneys.
That's why Equip for Equality gets pro bono help from 14 law firms (Kirkland & Ellis; McDermott Will & Emery; Latham & Watkins; Skadden; DLA Piper; Winston & Strawn; Neal, Gerber & Eisenberg; SNR Denton; Paul Hastings; Holland & Knight; Morgan, Lewis & Bockius; Bartlit Beck Herman Palenchar & Scott; Jones Day); as well as JP Morgan Chase's legal department.
One attorney who volunteers his time is Todd A. Solomon, a partner in the employee benefits practice group at McDermott Will & Emery.
Solomon said he doesn't specialize in special education. But Solomon said he has personal experience facing off with school officials about special education issues.
His 9-year-old son, Brian, has Asperger's syndrome. When Brian was entering kindergarten in Highland Park, the school district originally placed him in a self-contained, special education class for children with autism. But Solomon said his son would be better off in a regular classroom.
"He had sensory issues. He was really struggling to be functional in the classroom," Solomon said.
"He would have a hard time if a child screamed. … Our dispute was about appropriate placement: What type of classroom did Brian need? And we felt strongly he would benefit from being with typical peers. … Even though he needed some support and assistance with his learning, he would actually function better in a typical classroom, as opposed to a special education classroom."
Solomon said the family also worried that the school would have low expectations for Brian if he remained in the separate autism class. Solomon praised the school district for offering this program — "It's really lovely if you have a severely disabled child," he said — but he didn't believe it was the appropriate place for his son.
Solomon met with district officials, making the case that his son should be in a regular classroom. Even with his legal background, Solomon found it difficult to get a handle on what his son's rights were and how to press the case.
How could he persuade the school to do what he believed it was required to do — to educate Brian in the "least restrictive" environment possible?
"If a kid can handle it, the typical classroom would be better," Solomon said. "That's what you're entitled to under the law.
"I experienced firsthand how difficult the special education process was to navigate, even as a lawyer. It's pretty complicated from a legal standpoint to know what your rights are and how to enforce those rights. … I was very overwhelmed by it."
Solomon hired a lawyer to assist him and the school district finally relented and agreed to put Brian in a mainstream classroom on a trial basis.
Brian has been in regular classrooms ever since.
"It's going very, very well," Solomon said. "His needs have really lessened over time."
After going through that experience with his family, Solomon, who is co-chair of the pro bono and community service committee for McDermott Will & Emery's Chicago office, began helping other families deal with similar issues through pro bono work for Equip for Equality.
"When I talk with families, I'm able to say, 'Hey, I've been there. I know what you're going through. I'm gonna help,' " Solomon said.
He said parents are often reluctant to antagonize the very people who are educating their children.
"It's a tricky situation," he said. "The school is generally doing a good job and the teacher likes your child, so you're afraid to ask for what you believe your child needs.
"You assume the school has the child's best interests (at heart). Some parents are floored when they realize, 'Wait a minute. The school's not doing what we talked about.'"
Teri E. Engler, a partner at Sraga Hauser in Oak Brook and an executive committee member with the Illinois Council of School Attorneys, often handles the other side in these disputes.
"I don't think schools are the bad guys," she said, explaining that federal law creates a gap in expectations. "The law requires that districts provide what's 'minimally necessary' for a child to derive meaningful educational benefit from their program — not the best. Not what's optimal. Not what maximizes a child's potential. … That's not what a parent wants. You want what's best for your child."
And with schools facing budget problems, Engler said it's natural that disputes often arise over the sort of services they should provide for special education, even if educators are genuinely trying to help children.
Parents' lawyers can either help or hinder the situation depending on how they handle the case, Engler said. But on the whole, she lauded the work that Equip for Equality does in this arena.
"There are not nearly enough free or low-cost legal services available to parents of children with disabilities," she said. "So do they play a valuable role? Absolutely."
Most of the time, she said, Equip for Equality's lawyers are "collaborative, productive and collegial and really thoughtful in the way they dialogue with attorneys."
Solomon said he finds it gratifying when he's able to help a family resolve a dispute with a school district.
"It's the best part of volunteering — to see the impact on someone else's family," he said.
Getting prepared
About 200 attorneys received training from Equip for Equality on how to handle special education cases and other sorts of law relating to people with disabilities.
"It's important to have that training and support," said Bob Glaves, executive director of the Chicago Bar Foundation, which supports Equip for Equality with grants. "They do a good job of supporting a pretty large corps of volunteer lawyers and providing them with the necessary training and support to be able to jump in if this isn't their specialty area."
Naiditch said she originally worried about bringing in pro bono attorneys who didn't have experience in special education law. It would be a waste of time to train them if they volunteered once and never returned. But she said the program is succeeding because so many of the pro bono lawyers seem to feel inspired by helping out families.
"The only way this would be viable is if people really connected with the clinic and really made this a personal commitment," she said. "And we've seen that."
The state agencies and school districts challenged in court by Equip for Equality face tight financial times. Equip for Equality reported that the state may actually spend less money on better care by moving toward community-based living. And Naiditch said budget woes are no excuse to violate the rights of those with disabilities.
"Even when the economy was booming, Illinois wasn't putting the money into services that people needed," she said.
"We recognize that these are hard times and school districts are struggling, but the bottom line is that we want to see all students be successful. If these students don't get a quality education … we're going to end up paying later because they're not going to be able to take care of themselves."
#Source: Chicago Lawyer - By Robert Loerze Dec 15, 2011
http://www.chicagolawyermagazine.com/Articles/2011/12/15/Equip-For-Equality.aspx
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