A TROUBLED TRANSITION In the rush to close institutions, Illinois ignored serious problems in group homes

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.

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."  (Click to Continue)

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A TROUBLED TRANSITION In the rush to close institutions, Illinois ignored serious problems in group homes

See Also:
Part 1: Illinois hides abuse and neglect of adults with disabilities

SUFFERING IN SECRET: Flawed investigations ignore victims of neglect