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A Room of Her Own: Families of the Developmentally Disabled Fight for Care for Their Loved Ones

Jennifer Wilson moved into her new room at Bethesda Lutheran Communities in January.
WUIS/Illinois Issues

Jennifer Wilson’s family painted her new room a "buttercream yellow" in anticipation of her big move. They threw house-warming showers for the 27-year-old to equip her with all the things she will need in her first place. 



While some aspects of Wilson’s move are similar to other young adults’ first venture from their parents’ home, this change for Jennifer — who has cerebral palsy, moderate cognitive disability and epilepsy — took years of struggle and preparation. Her parents were caring for her at home without the help of any state services. Jennifer now lives with five other people in a Springfield home for the developmentally disabled run by Bethesda Lutheran Communities.

As Illinois shifts from providing services for people with developmental disabilities in large institutional settings toward smaller-scale community care, a struggle over funding has left families fighting for the care they feel is best for their loved ones. 

Wilson’s father, Rick, says that he and her mother were concerned that as they aged, Jennifer, who is in a wheelchair, might need help that they would be physically unable to provide. “As we get older, our bodies start to break down, and we may not be able to give her the best care.” 

Rick says he was worried about what might happen if he and Jennifer’s mom were not around to care for her. Where would she end up, and how would she cope with such a sudden change? “If something maybe happened to her mother and I ... all of a sudden she is forced into a situation.” 

So when Jennifer was 20, the Wilson family began to look for a new home for her where she could gain some independence from her parents. The state twice denied Jennifer placement at what is known as a community integrated living arrangement (CILA). CILAs can offer in-home services or offer care in a home-like setting with up to eight residents. They are geared toward encouraging individuals with disabilities to have as much independence and to be as active in their communities as possible. 

“We wanted her to be in a home. We did not want her going into an institutional setting,” Rick says. He says that since Jennifer grew up at home, a smaller living arrangement would be an easier transition than moving to a large facility with potentially dozens of new roommates. The Wilsons joined a class action lawsuit — Ligas v. Hamos, formerly Ligas v. Maram — with other individuals who did not want to be in institutional care. The state reached an agreement known as a consent decree with the plaintiffs this year. Under that decree, the state must offer community care placements to individuals who reside in state-funded privately run facilities with more than eight residents. Barry Taylor, legal director for Equip for Equality, a Chicago-based group that advocates for people with disabilities, says about 6,000 people live in such facilities in Illinois. 

The state is also required to provide in-home care to 3,000 residents who are not receiving services. Illinois has six years to comply with the decree. 

Brian Burke’s mother, Rita, says her son needs the regimented life of an institution.
Credit WUIS/Illinois Issues
WUIS/Illinois Issues
Brian Burke’s mother, Rita, says her son needs the regimented life of an institution.

The U.S. Supreme Court ruled in its 1999 Olmstead decision that states must offer the least restrictive and most integrated care possible to people with disabilities. The court found that placing individuals who could otherwise live in community settings into institutions is unjustified segregation and discrimination under the Americans With Disabilities Act. 

Other states have moved away from institutionalization, but Illinois has been slow to change. According to Equip for Equality, 14 states — including Michigan, Minnesota and Indiana — have eliminated all of their state-run institutions for people with developmental disabilities. While neighboring states scale back institutional care, Illinois is among the most institutionalized states in the nation. “I don’t believe that we would be where we are today if it weren’t for the lawsuit,” says Taylor, who worked on the Ligas case. “Illinois certainly has historically relied on institutions as its way for providing care.”

Gov. Pat Quinn recently sought to close two state-operated facilities for people with developmental disabilities as part of a larger plan to shutter seven state institutions to cut costs. Quinn later worked out a budget deal with the legislature to keep all the facilities open through the current fiscal year, but he has since proposed closing up to four developmental centers over the next two and a half years. Under Quinn’s plan, 600 of the about 2,000 residents in state facilities would be transitioned to community care. “I see this next three years as really carrying out the movement of community care,” Quinn says. “We have to do this in Illinois; we can't have folks in institutions.”

Michael Gelder, Quinn’s senior health policy adviser, says the Department of Human Services plans to conduct thorough evaluations of individuals who make the transition to the community to assure that they will be well-matched with the services they receive. Besides placing people into CILAs, Gelder says an option that is rarely practiced now should be a key component to the change. He says families should be allowed to devise their own care plans and then be given the money for the services they need. The families would report to oversight boards that would police for fraud, waste and neglect. Gelder says that model is more efficient and empowering for families who already know what help they need. “We would like to see it grow because I think it gives more authority to the family,” he says. 

The plan to move individuals to community care relies on money that would come from the closure of state facilities. Proponents argue that with a price tag that on average totals about $150,000 per person each year and can range up to $200,000 annually at more costly facilities, institutional care is too expensive, and the state and those in need of services could get much more bang for their buck from other options.

According to the Department of Human Services, state facilities have high overhead costs, and some have millions in deferred maintenance that has to be addressed. The Jacksonville Developmental Center was in danger of decertification for “life safety” code violations in 2010. The state made the improvements needed to keep it open. The cost for heat alone in some facilities that still have coal-fired boiler systems, such as the one at Jacksonville, is more than $5,000 per resident annually. 

Those who have advocated for deinstitutionalization in Illinois for years see the budget crunch as an opportunity for the state to catch up with the rest of the country. “The studies have shown over the years that the more normalized living that a person with developmental disabilities is in, the more growth they will show and the more happy they’ll be. … A small group home or one’s own apartment … is much more normal for any of us,” says Don Moss, coordinator for the Illinois Human Services Coalition.

Plans to close state institutions that care for the developmentally disabled, as well as shutting down other state facilities, have been on the books for years but have gained little traction. The state did shut down Howe Developmental Center in 2009, two years after the federal government decertified the institution for failing to meet minimum standards of care. 

Those in favor of facility closures say the power of Illinois’ public labor unions, coupled with the threat of lost jobs, makes it difficult to find the political support needed to close state institutions. A state facility can help spur a local economy, so lawmakers of all stripes — including many who oppose other forms of government spending — fight to keep their local facilities open. “There’s sort of the historical aspect, but there’s also the political aspect,” Taylor says. “There have been many times when governors have proposed closing facilities that then actually haven’t happen because of political forces.”

Union officials and community business leaders say that economic impact should be part of the discussion. “There’s been almost no talk about the people who work here. Well, who gives the great care that the individuals who reside here get? It’s the people who work here. And just to throw them out on the street and their talents out on the street — I think would be short-sighted,” Henry Bayer, executive director of Council 31 of the American Federation of State County and Municipal Employees, said at a hearing last October on the proposed closure of the Jack Mabley Developmental Center in Dixon. “To take care of the most vulnerable people, we should spend every dime we can muster.” 

While the Department of Human Services says it is striving for a “person-centered” approach, the parents of some individuals living in state facilities feel that they are being “bulldozed” by the trend toward community care. Rita Burke — president of the Illinois League of Advocates for the Developmentally Disabled, which represents parent organizations from the state facilities — says the administration refused to meet with her group until recently and did not seek input before announcing the new plan to close up to four facilities for the developmentally disabled and move out 600 people. “It is a quota-driven and agenda-driven plan, not person-centered,” she says. Burke argues that by proposing the number of residents up front, the Quinn administration does not seem concerned with the wishes of residents and their families. “We do not have here a plan … about asking families and guardians what they choose,” she says. “So many people, like cattle, are going to be moved out the door.”

Burke says many parents who feel their children are best served in state institutions have already tried community care, and often more than once. “Almost all of our family members have come from failed community settings. They didn’t fail. The community settings failed. They are inadequate [for some.] They are dangerous,” Burke says. “Community is fine for the people who it is fine for — who it is appropriate for — but it certainly is not for the most extreme cases.” 

Burke’s son, Brian Burke, has lived at the Choate Developmental Center in Anna for 20 years. Brian suffered a brain injury at 5 weeks old when his infant seat collapsed and his head struck a linoleum floor. Burke home-schooled her son, but he displayed aggressive and unpredictable behavior because of his impaired judgment. “He can tell you that he shouldn’t do something, but it doesn’t translate into a behavior that is compatible to that,” she says. 

Burke says she and her husband searched for years for the right home for Brian and moved across the country trying out several options. They settled on Choate, and her husband, Kevin, started a business in Illinois. They now live in Makanda, and Brian visits his parents’ home most weekends. “We looked all over the country and chose our home state of Illinois.”

Burke says her son needs the regimented life of an institution. He has pica, a disorder marked by eating nonedible items, and has had several surgeries to remove dangerous objects from his digestive system. She worries that moving Brian into the community, where people who come into contact with him may not be aware of his behaviors, would result in his being injured or arrested. “He will be in difficulty— if not in jail — on the first day if he is not in a structured setting.” Burke says the workers at Choate know Brian’s needs and can recognize things that might trigger his aggressive behavior. “Everybody is trained to work with Brian,” she says. “He lives a freer life than he could have possibly lived in the community.”

In the end, the issue boils down to one of spending. Both types of care are competing for basically the same pool of money. Experts on all sides of the issue say that the infrastructure needed to offer community care to those remaining in Illinois’ institutional settings, both private and public, does not yet exist. The state would have to further invest in community programs. Moss says that reimbursement rates for services provided in the community must be increased to ensure quality care. He estimates that even with such rate increases, the cost of caring for an individual in the community would average $75,000 to $80,000 annually — a far cry from the average cost of care in an institution. However, if larger facilities are not closed, thus freeing up dollars, it is unlikely that the state would shift money from other areas of a tight budget to spend on community care.

Rep. Al Riley, a Democrat from Olympia Fields, summed up the issue at a recent hearing on state facility closures. 

“People in groups basically care about this very vulnerable population that we all care about, but essentially they are at each other’s throats — because of dollars, because of ideology — and I just don’t think that that’s right.” 

Illinois Issues, February 2012

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