In crisis, she went to an Illinois facility. Two years later, she still isn’t able to leave

[February 09, 2024]  By MOLLY PARKER
& BETH HUNDSDORFER
Capitol News Illinois
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This article was produced for ProPublica’s Local Reporting Network in partnership with Capitol News Illinois.

Kaleigh Rogers was in crisis when she checked into a state-run institution on Illinois’ northern border two years ago. Rogers, who has cerebral palsy, had a mental health breakdown during the pandemic and was acting aggressively toward herself and others.

Before COVID-19, she had been living in a small group home; she had been taking college classes online and enjoyed going out with friends, volunteering and going to church. But when her aggression escalated, she needed more medical help than her community setting could provide.

With few viable options for intervention, she moved into Kiley Developmental Center in Waukegan, a much larger facility. There, she says she has fewer freedoms and almost nothing to do, and was placed in a unit with six other residents, all of whom are unable to speak. Although the stay was meant to be short term, she’s been there for two years.

The predicament facing Rogers and others like her is proof, advocates say, that the state is failing to live up to the promise it made in a 13-year-old federal consent decree to serve people in the community.

Rogers, 26, said she has lost so much at Kiley: her privacy, her autonomy and her purpose. During dark times, she cries on the phone to her mom, who has reduced the frequency of her visits because it is so upsetting for Rogers when her mom has to leave.

The 220-bed developmental center about an hour north of Chicago is one of seven in the state that have been plagued by allegations of abuse and other staff misconduct. The facilities have been the subject of a monthslong investigation by Capitol News Illinois and ProPublica about the state’s failures to correct poor conditions for people with intellectual and developmental disabilities. The news organizations uncovered instances of staff who had beaten, choked, thrown, dragged and humiliated residents inside the state-run facilities.

Advocates hoped the state would become less reliant on large institutions like these when they filed a lawsuit in 2005, alleging that Illinois’ failure to adequately fund community living options ended up segregating people with intellectual and developmental disabilities from society by forcing them to live in institutions. The suit claimed Illinois was in direct violation of a 1999 U.S. Supreme Court decision in another case, which found that states had to serve people in the most integrated setting of their choosing.

Negotiations resulted in a consent decree, a court-supervised improvement plan. The state agreed to find and fund community placements and services for individuals covered by the consent decree, thousands of adults with intellectual and developmental disabilities across Illinois who have put their names on waiting lists to receive them.

Now, the state has asked a judge to consider ending the consent decree, citing significant increases in the number of people receiving community-based services. In a court filing in December, Illinois argued that while its system is “not and never will be perfect,” it is “much more than legally adequate.”

But advocates say the consent decree should not be considered fulfilled as long as people with disabilities continue to live without the services and choices that the state promised.

Across the country, states have significantly downsized or closed their large-scale institutions for people with developmental and intellectual disabilities in favor of smaller, more integrated and more homelike settings.

But in Illinois, a national outlier, such efforts have foundered. Efforts to close state-operated developmental centers have been met with strong opposition from labor unions, the communities where the centers are located, local politicians and some parents.

U.S. District Judge Sharon Johnson Coleman in Chicago is scheduled in late summer to decide whether the state has made enough progress in building up community supports to end the court’s oversight.

For some individuals like Rogers, who are in crisis or have higher medical or behavioral challenges, the state itself acknowledges that it has struggled to serve them in community settings. Rogers said she’d like to send this message on behalf of those in state-operated developmental centers: “Please, please get us out once and for all.”

“Living Inside a Box”

Without a robust system of community-based resources and living arrangements to intervene during a crisis, state-operated developmental centers become a last resort for people with disabilities. But under the consent decree agreement, the state, Equip for Equality argues, is expected to offer sufficient alternative crisis supports to keep people who want them out of these institutions.

In a written response to questions, Rachel Otwell, a spokesperson for the Illinois Department of Human Services, said the state has sought to expand the menu of services it offers people experiencing a crisis, in an effort to keep them from going into institutions. But Andrea Rizor, a lawyer with Equip for Equality, said, “They just don’t have enough to meet the demand.”

For example, the state offers stabilization homes where people can live for 90 days while they receive more intensive support from staff serving the homes, including medication reviews and behavioral interventions. But there are only 32 placements available — only four of them for women — and the beds are always full, Rizor said.

Too many people, she said, enter a state-run institution for short-term treatment and end up stuck there for years for various reasons, including shortcomings with the state’s discharge planning and concerns from providers who may assume those residents to be disruptive or difficult to serve without adequate resources.

That’s what happened to Rogers. Interruptions to her routine and isolation during the pandemic sent her anxiety and aggressive behaviors into overdrive. The staff at her community group home in Machesney Park, unsure of what to do when she acted out, had called the police on several occasions.

Doctors also tried to intervene, but the cocktail of medications she was prescribed turned her into a “zombie,” Rogers said. Stacey Rogers, her mom and legal guardian, said she didn’t know where else to turn for help. Kiley, she said, “was pretty much the last resort for us,” but she never intended for her daughter to be there for this long. She’s helped her daughter apply to dozens of group homes over the past year. A few put her on waitlists; most have turned her down.

Rebekah Zienty, an active treatment administrator, helps Kaleigh Rogers play a piano, one of the few activities she enjoys, at Kiley Developmental Center. (Taylor Glascock, special to ProPublica)

“Right now, all she’s doing is living inside a box,” Stacey Rogers said.

Although Rogers gave the news organizations permission to ask about her situation, IDHS declined to comment, citing privacy restrictions. In general, the IDHS spokesperson said that timelines for leaving institutions are “specific to each individual” and their unique preferences, such as where they want to live and speciality services they may require in a group home.

Equip for Equality points to people like Rogers to argue that the consent decree has not been sufficiently fulfilled. She’s one of several hundred in that predicament, the organization said.

“If the state doesn’t have capacity to serve folks in the community, then the time is not right to terminate this consent decree, which requires community capacity,” Rizor said.

Equip for Equality has said that ongoing safety issues in these facilities make it even more important that people covered by the consent decree not be placed in state-run institutions. In an October court brief, citing the news organizations’ reporting, Equip for Equality said that individuals with disabilities who were transferred from community to institutional care in crisis have “died, been raped, and been physically and mentally abused.”

Over the summer, an independent court monitor assigned to provide expert opinions in the consent decree, in a memo to the court, asked a judge to bar the state from admitting those individuals into its institutions.

In its December court filing, the state acknowledged that there are some safety concerns inside its state-run centers, “which the state is diligently working on,” as well as conditions inside privately operated facilities and group homes “that need to be addressed.” But it also argued that conditions inside its facilities are outside the scope of the consent decree. The lawsuit and consent decree specifically aimed to help people who wanted to move out of large private institutions, but plaintiffs’ attorneys argue that the consent decree prohibits the state from using state-run institutions as backup crisis centers.

In arguing to end the consent decree, the state pointed to significant increases in the number of people served since it went into effect. There were about 13,500 people receiving home- and community-based services in 2011 compared with more than 23,000 in 2023, it told the court.

The state also said it has significantly increased funding that is earmarked to pay front-line direct support professionals who assist individuals with daily living needs in the community, such as eating and grooming.

In a statement to reporters, the human services department called these and other improvements to the system “extraordinary.”

Lawyers for the state argued that those improvements are enough to end court oversight.

“The systemic barriers that were in place in 2011 no longer exist,” the state’s court filing said.

Among those who were able to find homes in the community is Stanley Ligas, the lead plaintiff in the lawsuit that led to the consent decree. When it was filed in 2005, he was living in a roughly 100-bed private facility but wanted to move into a community home closer to his sister. The state refused to fund his move.

Today, the 56-year-old lives in Oswego with three roommates in a house they rent. All of them receive services to help their daily living needs through a nonprofit, and Ligas has held jobs in the community: He previously worked in a bowling alley and is now paid to make public appearances to advocate for others with disabilities. He lives near his sister, says he goes on family beach vacations and enjoys watching professional wrestling with friends. During an interview with reporters, Ligas hugged his caregiver and said he’s “very happy” and hopes others can receive the same opportunities he’s been given.

While much of that progress has come only in recent years, under Gov. JB Pritzker’s administration, it has proven to be vulnerable to political and economic changes. After a prolonged budget stalemate, the court in 2017 found Illinois out of compliance with the Ligas consent decree.

At the time, late and insufficient payments from the state had resulted in a staffing crisis inside community group homes, leading to escalating claims of abuse and neglect and failures to provide routine services that residents relied on, such as help getting to work, social engagements and medical appointments in the community. Advocates worry about what could happen under a different administration, or this one, if Illinois’ finances continue to decline as projected.

“I acknowledge the commitments that this administration has made. However, because we had so far to come, we still have far to go,” said Kathy Carmody, chief executive of The Institute on Public Policy for People with Disabilities, which represents providers.

While the wait for services is significantly shorter than it was when the consent decree went into effect in 2011, there are still more than 5,000 adults who have told the state they want community services but have yet to receive them, most of them in a family home. Most people spend about five years waiting to get the services they request. And Illinois continues to rank near the bottom in terms of the investment it makes in community-based services, according to a University of Kansas analysis of states’ spending on services for people with intellectual and developmental disabilities.

Advocates who believe the consent decree has not been fulfilled contend that Illinois’ continued reliance on congregate settings has tied up funds that could go into building up more community living options. Each year, Illinois spends about $347,000 per person to care for those in state-run institutions compared with roughly $91,000 per person spent to support those living in the community.

For Rogers, the days inside Kiley are long, tedious and sometimes chaotic. It can be stressful, but Rogers told reporters that she uses soothing self-talk to calm herself when she feels sad or anxious.

“I tell myself: ‘You are doing good. You are doing great. You have people outside of here that care about you and cherish you.’”

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