Illinois faces backlash over bid to end oversight of disability services

[July 23, 2024]  By MOLLY PARKER
& BETH HUNDSDORFER
Capitol News Illinois
[e-mail]

As Illinois seeks to end federal court oversight of its disability services, an independent court monitor says the state continues to fall short of promises made 13 years ago to allow people with intellectual and developmental disabilities to live outside of institutions.

Court hearings are set to begin this week as to whether the state will be released from what’s known as the Ligas consent decree. The consent decree originated from a 2005 lawsuit alleging that Illinois' insufficient funding for community living options led to the segregation of individuals with intellectual and developmental disabilities. Due to the lack of support for living in the community, many were forced to seek care in large, hospital-like facilities. The lawsuit argued this violated a landmark 1999 U.S. Supreme Court decision in a case against Georgia, which mandated states accommodate individuals in the most integrated setting of their choosing.

In 2011, to settle the Ligas case, the state agreed to undergo a major expansion of its community-based services. And in December, the state filed a motion to vacate the consent decree, accompanied by a lengthy report stating it had exceeded its commitments despite that its system of care is “not and will never be perfect.”

But Ronnie Cohn, the monitor and a New York-based expert on disability services, told the court that too many people still can’t access community-based services in Illinois, especially those in crisis or who have more complex medical and behavioral support needs.

Cohn’s report referenced a February news article by Capitol News Illinois and ProPublica that featured a young woman with cerebral palsy who had been unable to leave Kiley Developmental Center in upstate Waukegan despite her desire to live in the community. Pandemic restrictions had exacerbated the woman’s anxiety and aggression at her group home, leading to repeated police calls and overmedication.

Placed at Kiley in crisis, she had hoped it would be a short stay to adjust her medications and find a different group home that could better meet her needs. But instead, she had been stuck there for two years, unable to find a suitable alternative. She remains at Kiley, though she did recently find a group home provider and will move out soon.

Cohn said situations like this are not unique and illustrate why the consent decree is still needed. She highlighted numerous other cases of individuals covered by the consent decree who had faced barriers to moving out of state-run facilities. She faulted a dearth of community services available to support them and poor planning by state staff who are supposed to help facility residents find community placements and develop the skills needed to live more independently.

“The motion to terminate does not make sense at this time and juncture,” Cohn said in a late May court filing. Equip for Equality, a legal advocacy organization and the plaintiffs’ attorneys, previously had told the court it also objects to ending the consent decree.

The state’s motion to vacate claimed that, as a result of historic investments, Illinois extended support to thousands more individuals in community group homes and family settings – more than 23,000 in 2023 compared to 13,500 in 2011. It increased pay for frontline workers who help people with daily tasks like eating, bathing and errands. And the state argued it significantly reduced the time people spend waiting for services, especially when they are facing a crisis.

Cohn acknowledged that the state has improved since 2011, but she argued that it’s not been enough, echoing what advocates have long emphasized: Illinois continues to rely too heavily on large, state-operated developmental centers and other similar privately operated facilities, as well as segregated work programs known as “workshops.”

Choate Mental Health and Developmental Center in rural Anna, Illinois, was built more than 150 years ago. (Whitney Curtis for ProPublica)

And while the state has expanded the number of people served in Community Integrated Living Arrangements, or CILAs, even the state's group home model is outdated, Cohn said. Many of the homes house six to eight individuals, while disability rights advocates say that CILA homes of three or fewer people more closely reflect the independence and privacy that most people desire. As a result of these myriad shortcomings, she wrote, Illinois’ system of care operates in “stark contrast to national best practices.”

In her statement to the court, she included state data showing that there are currently 200 individuals covered by the consent decree residing in six of the state’s seven developmental centers. These centers have been the focus of a monthslong investigation by the news organizations that has exposed abuse, poor care, efforts by staff to conceal misconduct, and systemic failures to improve conditions over at least two decades.

In prior reports to the court, Cohn and Equip for Equality have emphasized that persistent safety concerns in these facilities underscore the critical importance of avoiding placements in state-run institutions for individuals covered by the consent decree. In an October court brief, Equip for Equality said individuals had been transferred from community homes to institutional care during crises and then suffered tragic outcomes.

More than half of the 200 individuals who have been sent to institutions ended up at Choate Developmental Center in the small southern Illinois town of Anna, where the news organizations uncovered some of the most egregious instances of abuse and cover-ups. In its December court filing, the state acknowledged problems inside some of the centers and said they are working to address them, while adding that facility conditions are not covered by terms of the consent decree.

Illinois Department of Human Services officials previously told reporters they planned to install security cameras in common areas at all state-run facilities, along with beefing up staffing, training, security and oversight.

To deal with more acute safety problems at Choate, state officials announced a plan in March 2023 to begin relocating about 120 Choate residents, roughly half of the people residing there at the time. IDHS said that, as of mid-July, 49 individuals had relocated: 37 moved into other facilities, mostly state-run developmental centers, and nine individuals transitioned into group homes or moved home with relatives.

Cohn told the court she’d heard from individuals receiving services and their loved ones from across the state since Illinois made its bid to terminate the consent decree.

At an April “Ligas Family Town Hall,” participants “passionately expressed fears over potential termination,” Cohn told the court, with one self-advocate saying, “I thought Illinois wanted to go forward, not millions of steps backward.”

Cohn said in her court testimony she had also received numerous phone calls and emails. In one correspondence, a parent told Cohn that most group homes in their region house eight people, which the parent said is not well suited for those with higher needs like their son. While he currently lives at home, Cohn said the parent told her: “Our son’s long-term outcomes are not promising, and as we age, we worry about his future when we can no longer care for him.”

Oral arguments in the Ligas case are scheduled to begin Wednesday in Chicago in the U.S. District Court for the Northern District of Illinois.

Capitol News Illinois is a nonprofit, nonpartisan news service covering state government. It is distributed to hundreds of print and broadcast outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation, along with major contributions from the Illinois Broadcasters Foundation and Southern Illinois Editorial Association.