TRIBUNE WATCHDOG
A TROUBLED TRANSITION In the rush to close institutions, Illinois ignored serious problems in group homesMark Winkeler needs 24-hour care and has lived his entire adult life at Murray Developmental Center. His mother, Rita, and others sued when the Quinn administration sought to close Murray and move residents into group homes. (John J. Kim / Chicago Tribune)
Adults with mild disabilities were the most coveted.
In April 2012, as Illinois moved to close several state institutions and relocate adults with disabilities into the community, representatives from group home businesses gathered inside the Jacksonville Developmental Center for a hastily organized auction.
A state official read aloud medical histories of residents with intellectual and developmental disabilities, prompting group home officials to raise their hands for desired picks.
Group home operators knew that then-Gov. Pat Quinn wanted to empty Jacksonville quickly — before any serious union or community opposition could be mounted — but some were taken aback by what they saw as a dehumanizing approach. "We were appalled by the auction," said Art Dykstra, executive director of Trinity Services, the state's largest group home provider.
The problems with Quinn's rapid-deployment plan, however, went beyond mere awkwardness.
Officials from the Illinois Department of Human Services promised residents that group homes offered a new beginning — one that would bring them more independence, safe and compassionate care, even a private bedroom.
But those promises obscured evidence found in the state's own investigative files that revealed many group homes were underfunded, understaffed and dangerously unprepared for new arrivals with complex needs, a Chicago Tribune investigation found.
In the five years preceding the auction, Human Services' inspector general substantiated more than 600 cases of abuse and neglect in group homes, an analysis of state data shows. State investigators tracked an additional 1,420 cases that uncovered evidence of harm or deficiencies but did not result in formal findings.
The Tribune's "Suffering in Secret" investigation, first published in November, uncovered a system where caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.
Some cases of neglect found by the Tribune involved individuals who had been relocated to group homes from state institutions. Among the most startling: A man transferred from a state developmental center to a series of group homes died under suspicious circumstances in 2010 after he was forced to sleep on a soiled mattress on the floor of a cluttered room used for storage.
With adequate funding and social supports, adults with disabilities fare best when mainstreamed into the community, widely accepted research studies show. Spurred by court decrees and a growing disability-rights movement, most states have closed some or all of their institutions and shifted funding to community-based residences like group homes. But in Illinois, not enough money has followed the people, the Tribune found.
Group homes have gone nearly nine years without an increase in reimbursement rates for staff wages. Overall, Illinois consistently ranks among the lowest five states for financial commitment to community care, federal records show.
"We've said all along the community system is grossly underfunded," said Zena Naiditch, CEO of Equip for Equality, Illinois' federally empowered disability-rights watchdog. "It's been grossly underfunded for decades."
Instead of opening doors to independence, dozens of financially strapped group home businesses reduced or eliminated community activities as too expensive or time-consuming, according to investigative files from multiple state agencies.
Complaints of food rationing were common. One home budgeted $1.22 per meal, limited servings to 4 ounces of protein and prohibited second helpings.
Even the state's promise of a private bedroom proved illusory. Though group home operators agreed not to admit more than four residents per home, hundreds of providers have routinely bunked up to eight people with disabilities into tight quarters, an analysis of state licensing files and advocacy group reports shows.
At the time of the Jacksonville closing, Human Services characterized the state's aging institutions as an antiquated and costly system with a long history of harm and inadequate care. By contrast, state officials described group homes as adequately funded and staffed.
But when group home providers were surveyed in 2012 to gauge support for Quinn's plan, they complained of pervasive problems, according to records obtained by the Tribune.
Several providers charged that Illinois routinely failed to fully disclose behavioral histories of state developmental center residents who represented a threat to themselves or others. Without that information, group homes can't take the steps necessary to keep all residents safe.
Providers also said state funding was inadequate to cover staffing costs, diminishing the quality of care inside group homes and decreasing residents' independence. Other group homes railed against the state's inability to fund necessary levels of nursing care, with one provider writing: "Typically, an individual is funded for approximately one hour per month for nursing oversight."
Instead of boosting funding overall or slowing down relocations, however, Human Services officials adopted an extraordinary tactic to obscure problems. They required group home executives accepting transfers to sign a pledge of loyalty, extracting a vow to "not do anything to inhibit, diminish, or undermine" the state's closure plans, the Tribune found.
Failure to sign, Human Service officials warned, would restrict access to the Jacksonville auction and result in no referrals of developmental center residents to fill empty beds.
To avoid being shut out, at least 67 businesses signed the one-page pledge, state records show.
But one group refused to be silent about the state's plans: parents of individuals in institutions who worried their children would not get the care they need in a group home. And in the town of Centralia, about an hour east of St. Louis, a battle was brewing.
Rita Winkeler ties her son Mark's shoelace at Murray Developmental Center. Murray parents were apprehensive about a transition to group homes because they feared many did not offer adequate skilled nursing care. (John J. Kim / Chicago Tribune)
Parents fight back
Rita Winkeler's 32-year-old son Mark has lived his entire adult life at Murray Developmental Center. His modest private room, equipped with a television and DVD player, is covered with family pictures and Chicago Cubs and St. Louis Cardinals memorabilia.
Because of severe developmental and intellectual disabilities, he requires 24-hour care; he needs to be fed, diapered and bathed. Winkeler believes her son is happy and well cared for at the center.
But after emptying Jacksonville and moving most of its 180 residents to group homes, the Quinn administration set its sights on Murray.
This time, though, parents and guardians of the residents banded together and orchestrated public events to rally support from the community, state labor unions and lawmakers.
Soon "Save Murray" signs blanketed Centralia. In a city of just 13,000 people, nearly everyone knew someone who had a connection to the center through a resident, employee or contractor. The potential closure represented a cataclysmic event for the rural community, located about 275 miles south of Chicago.
Beyond the economic impact, the battle for Murray centered on choice. For many parents and guardians, Murray was a haven — a place where the staff outnumbered residents, where a registered nurse was never more than a few steps away.
In early 2013, 11 parents and guardians of adult children who lived at state institutions, including Winkeler, filed a federal lawsuit to halt the state's plan.
Murray's cinder-block buildings border a 120-acre grassy oval crisscrossed by walkways that lead to an outdoor shelter with picnic benches and gardens, a gymnasium and outdoor pool. Built in 1964, Murray resembles an aging community college. But inside it has the look of a nursing home. Its six residential buildings, sheltering about 40 residents each, are dominated by a central desk with hallways branching out to rooms.
At the time of the lawsuit, there were 274 residents and 547 staff members, an enviable ratio made possible by a $41 million annual operating budget.
Winkeler, a former third-grade teacher and head of the decades-old Murray Parents Association, said Murray families were not opposed to the group home concept. Indeed, Winkeler serves as guardian for her 58-year-old brother, who she said thrives in a group home setting.
"Group homes are great for some people like my brother," she said. "But the state wants to fit everyone into the same-size shoe."
Rita Winkeler talks about her son, Mark, who lives at Murray Developmental Center, an institution downstate. Mark, 32, has profound developmental disabilities and has lived at the center for his entire adult life. (John J. Kim / Chicago Tribune)
Following the lawsuit, the battle lines hardened.
Murray supporters alleged the state had used deceitful tactics to steer vulnerable adults into substandard group homes as a way to save money. In 2012, state officials calculated the annual cost of care for an institutionalized resident was about $219,000, compared with $84,000 at a group home.
The Arc of Illinois, a nonprofit advocacy group, emerged as a chief proponent for closure, referring to parents as misguided, describing residents as "incarcerated" and exhorting the public in a web blog: "Free our people!"
"There's no doubt that the state institutional model is a relic that should have been closed down in Illinois and other states long ago," Tony Paulauski, the group's director, told the Tribune.
As part of the court case, Human Services officials said most of the guardians of Jacksonville residents who responded to a state-funded survey were satisfied with the new homes. But Murray parents noted that nearly two-thirds of the guardians didn't answer the survey, which was conducted by the University of Illinois at Chicago.
Meanwhile, Human Services tracking records from April 2012 through March 2013 show a total of 84 admissions to hospitals or emergency rooms, 18 psychiatric admissions and 29 police encounters involving transferred Jacksonville residents.
All sides understood that the outcome of the court case could dictate the near-term future for how Illinois cared for people with severe disabilities.
For the last decade, prodded by a U.S. Supreme Court decision and federal consent decrees, Illinois has worked to transfer hundreds of people with disabilities who had been inappropriately institutionalized.
Many of Illinois' now-closed institutions had a long history of horrific conditions. At Murray, a staff member was accused last year of forcing a resident to take a shower as a punishment. The resident, who was deaf and blind, choked in the shower and later died at the hospital.
But Murray families argued that residents with severe disabilities who moved into group homes were unlikely to receive the 24-hour assistance they needed. Instead of funding that help, the state has used a cumbersome approval process to authorize extra staffing, typically for a limited number of hours each day. Group home owners said they were forced to guess in advance when the resident might be in the most need of care and oversight.
Families who toured prospective group homes said they observed thinly staffed shifts of inexperienced caregivers who acknowledged that they didn't know how to deal with aggressive behaviors or a medical crisis except to call 911, according to court records.
Murray parents also expressed fears that many group homes did not offer adequate skilled nursing care — fears that were warranted, a Tribune analysis of state investigative records shows.
At one group home business — United Cerebral Palsy Land of Lincoln — the Human Services inspector general cited four nurses for neglect involving three unrelated deaths between 2012 and 2015. Records from one of those cases reveal that two nurses were responsible for 52 residents from Springfield to Bloomington.
Since the deaths, CEO Brenda Yarnell said the group home business has hired a director of nursing to oversee two nurses to improve supervision of resident care. Salaries of two nurses are paid through private fundraising efforts, she said, because Human Services won't pay for additional nursing care.
Echoing written complaints to Human Services by many providers over the years, Yarnell said state reimbursement rates for nursing are inadequate, often covering costs of just one nurse.
"It's been really hard," she said. "The expectation is impossible."
New home a bad fit
Despite the pending lawsuit and known problems in the group home industry, Human Services officials in mid-2013 began to move out Murray residents whose state guardians did not oppose the closure.
A longtime Murray resident named Carl was among the first to be relocated, but he didn't go far. His new private group home, a 1,300-square-foot ranch house, was across a county road from Murray. In his wheelchair, he could stare out the window at his old life.
A Murray resident named Carl was moved across the street to this group home. Murray caregivers complained to officials that Carl's challenges made a group home the wrong fit. He was moved back after multiple hospitalizations. (John J. Kim / Chicago Tribune)
Murray caregivers complained to their supervisors and to the governor's office that Carl's severe medical, intellectual and physical challenges did not make him a good candidate for a group home where he would be limited in movement and have less contact with other people, according to court records.
Carl has poor vision and must use a wheelchair, though he can walk a few steps with a walker or staff assistance. He understands the concept of yes or no and has a small vocabulary — he can say "cookie" or "food," for instance — but he wears diapers and requires help for the most basic activities, such as bathing, dressing or using the restroom.
At his new group home, run by Support Systems & Services, his wheelchair barely fit down the narrow hallway, according to witness accounts in court and state records. A Murray staffer who visited him described Carl as being "like a giant in a dollhouse."
According to a written report by a court-appointed guardian, Carl suffered his first seizure in three years after his anti-convulsant medication ran out and he received none for three days.
In addition to complaining about the home's size, Murray staffer Lorre Winter wrote a series of emails in July 2013 to Richard Starr, then director of Murray, stating that she was "seeing problems that weren't being addressed."
"There is more involved than just placing them in a house and feeding them," she wrote in the emails, which surfaced in the lawsuit against the state.
Starr wrote that Winter should "stick to objective concerns rather than subjective."
Winter, who had worked with Carl when he was at Murray, responded: "Someone has to speak up for these people and if that is what I have to do then I will and deal with the consequences later."
The Tribune verified Carl's identity and the home's location through government records and state emails. After months of discussions, the Illinois Office of State Guardian confirmed that Carl was a state ward. The Tribune is not using Carl's full name, as he is not capable of giving consent.
David Jaques, chief executive of Support Systems & Services, told the Tribune that Carl thrived at the home and improved his mobility after a physical therapist trained the home's staff to help him. Jaques attributed the initial lack of anti-convulsant medication for Carl to a billing problem at the pharmacy related to the transition from Murray.
While Carl was living in the group home, a federal district judge ruled in July 2014 that guardians of Murray residents could not stop the state from closing the facility. A three-judge appellate court panel later affirmed that decision and called Illinois a "laggard outlier" in the national movement to transition residents from institutions into the community.
But the Murray parents found an unexpected supporter in Republican gubernatorial nominee Bruce Rauner, who won the November 2014 election and kept his vow not to close Murray. The parents had held off the state, at least temporarily.
Jerry Stermer, who served as a senior adviser to Quinn, defended the former governor's handling of the closure process.
The Jacksonville auction, Stermer said, was designed to match residents with group home providers who could meet their needs. Following complaints from businesses, state officials relied on a silent auction process in which group home officials marked preferred resident selections on paper, he said.
Quinn’s goal, Stermer said, was to shift money from supporting a few hundred people in an expensive state facility to helping a far greater number of individuals receive community-based care.
The Rauner administration has stated there will be no institutional closures this fiscal year, which ends in June. About 1,650 residents remain in seven developmental centers, and the Arc of Illinois continues to lobby vigorously for closing at least six of them. In 2012, Quinn targeted four developmental centers for closure but succeeded only with Jacksonville.
State records show that Carl was returned to Murray earlier this year, after multiple hospitalizations and new medical complications that caused severe weight loss. Winter now helps provide Carl's care.
For now, the state acknowledged, the institution is where Carl needs to be.
The Misericordia question
Hundreds of miles away on the campus of Misericordia Heart of Mercy, the most formidable opponent of the big-is-bad philosophy is gently rallying 200 women at a fundraising luncheon to take on what she calls "the injustice of the system of service for people with disabilities."
For nearly half a century, Sister Rosemary Connelly, the Roman Catholic nun who leads Misericordia, has defied convention as she built a community for 600 people with developmental disabilities on the site of an abandoned orphanage in Chicago's West Rogers Park neighborhood.
"The bureaucrats have held since the '70s that anything that is big is bad," Connelly tells the crowd at the Christmas luncheon. "They hate Misericordia because of the fact that we're big and we're not bad. We're good. And we're good because so many people believe in us enough to get involved."
If Murray resembles an aging community college, then Misericordia's 31 acres look more like an elite liberal arts campus, the antithesis of institutions that confine rather than care for people with intellectual disabilities.
Misericordia Heart of Mercy in Chicago serves 600 people with developmental disabilities. Its continuum of care, the size of its staff and the varied programming attract 300 families to Misericordia's waiting list. (John J. Kim / Chicago Tribune)
Though the front-porch appeal of the buildings impresses visitors, it's the continuum of care, the size of the staff (about 1,000) and the varied programming (commercial bakery, greenhouse, restaurant, art studio, aquatic center) that attracts 300 families to Misericordia's waiting list.
Executives of some group homes pride themselves on taking in residents whom others won't — people with severe behavioral issues and mental illness. Misericordia doesn't do that because, Connelly says, her organization couldn't meet their needs.
On-campus housing options range from a village of homes for more independent residents to a skilled-nursing facility for medically fragile children and adults. As medical advances have extended the lives of people with disabilities, Misericordia this year tapped private donations to open four 15-unit homes to cater to the needs of aging residents and those with dementia.
But to advocates who push for closing state institutions, any large facility that segregates residents from people without disabilities is a barrier to the ideal of community living and represents an outdated approach.
Paulauski, of The Arc, has been engaged in a philosophical tussle with Connelly for four decades as both pursue their vision of working with people with developmental disabilities.
"People with disabilities must be able to live in the community, work in the community, and participate in all aspects of community life together with their peers without disabilities," he wrote to supporters in an "action alert" last spring when a bill granting Misericordia special licensing status came up in Springfield.
Sister Rosemary Connelly, executive director of Misericordia, works in her office. The Roman Catholic Sister of Mercy for decades has tussled with activists who say all big settings are bad. (John J. Kim / Chicago Tribune)
Connelly sees Misericordia as a vibrant community. She doesn't oppose group homes; Misericordia operates 10 of them in Chicago and Lincolnwood.
Yet she calls them "isolated houses in the community" and says the 65 residents who live there, most of whom have off-campus jobs, have richer lives because they can come back to campus for activities. After-work social gatherings at Misericordia include clubs geared toward various sports, music, science, technology, sewing, theater and dance.
Her view: Big can be bad. Small can be bad, too. Both can be good. The danger comes when policymakers who control the funding insist that one size fits all.
"I don't think we're the only way," Connelly said. "All I say is we're a legitimate way."
The divide over institutional care threatens the government support of Misericordia and more than 200 of Illinois' other private intermediate-care facilities — settings that serve nine or more people with disabilities under one roof. Statewide, these private facilities care for twice the number of people that state developmental centers do and at a fraction of the cost. Misericordia, for instance, receives about $65,000 annually for each of the 360 residents in its 21 intermediate-care facilities.
In his first year in office, Rauner proposed a 12 percent cut to the funding for this type of care, a reduction forestalled only by the state's inability to pass a budget. More broadly, federal and state officials are wrestling with which settings are too "isolated" to merit funding.
For example, federal and state regulators have put Misericordia's developmental training program under "heightened scrutiny" because when group home residents bake brownies, package ground coffee or fold clean laundry, they are doing so on Misericordia's campus, the type of setting that the federal government presumes has the "the qualities of an institution." To retain funding for this programming, Connelly and her staff have to prove that the people holding these jobs also have meaningful lives in the larger community.
As part of its programming, Misericordia runs the Hearts & Flour Bakery, which helps some residents develop job skills. (John J. Kim / Chicago Tribune)
For policymakers, the challenge is that for too long bigger settings were the only option. Stanley Ligas, a man with Down syndrome, could read and balance his checkbook and held a job at a Popeyes chicken restaurant, but the state repeatedly turned him down when he asked to move from a 96-bed intermediate care facility in Woodstock to a smaller home.
A federal lawsuit filed on behalf of Ligas and thousands of other people with disabilities led in 2011 to the Ligas consent decree, which requires Illinois to fund community living options for people who want to leave intermediate care facilities and those who are living at home but seek community services or placement.
Connelly knows what can happen if government loses faith in a model of care. Misericordia's campus sits on the grounds of the former Angel Guardian Orphanage, which closed in the 1970s when it lost government funding as the state shifted from orphanages to foster homes.
Misericordia can provide the care it does because Connelly, her staff and thousands of volunteers raise more than $20 million in private money each year to supplement the government support.
But Connelly turned 85 this year. A goal of the Christmas luncheon was not just to raise money but also to build a next generation to take on the big-is-bad activists when she's gone. Connelly wrote to supporters this year that the state can learn a lesson from the shuttered orphanage.
"When I see the middle-aged homeless people on the streets of Chicago," she wrote, "I wonder how many are the so-called 'success stories' of the '70s when the government allowed institutions to close without providing adequate support for all involved."
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