Federal judge rejects Illinois’ bid to end court oversight of disability programs

[September 05, 2024]  By MOLLY PARKER
& BETH HUNDSDORFER
Capitol News Illinois
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A federal judge on Friday denied Illinois' request to end court oversight of its disability services.

Judge Sharon Johnson Coleman, with the U.S. District Court for the Northern District of Illinois, agreed with legal advocates who argued that the state still hasn't met its decade-old promises to help people with intellectual and developmental disabilities live outside large institutions.

The ruling stems from a legal settlement that established court oversight of the Illinois Department of Human Services’ programs in 2011. Known as the Ligas consent decree, it followed a 2005 lawsuit accusing Illinois of failing to support people who wanted to live in community settings — whether with family, in their own homes, or in small group homes. The lawsuit claimed Illinois violated a 1999 U.S. Supreme Court ruling, which mandated that states provide options for care in integrated community settings.

Illinois has long been an outlier in the number of people and the amount of money it puts into maintaining large state-run and private institutions that house people in hospital-like settings. And over the past two years, Capitol News Illinois and ProPublica have exposed severe conditions, including extreme abuse and life-threatening neglect, in the state’s seven developmental centers. Some residents and their caregivers have sought to leave these facilities but told reporters they’ve been unable to find suitable group home placements due to a shortage of options that meet their specific medical and behavioral needs.

In a court filing late last year, the state argued that it had substantially increased funding for community-based care and, as a result, saw the number of people served in family homes and group homes increase from 13,500 in 2011 to over 23,000 in 2023. The state also said it had raised pay for workers who assist with daily tasks like eating and bathing in community settings and had reduced wait times for services, especially for those in crisis.

In late May, Ronnie Cohn, an independent monitor in the case, told the judge in a court filing that referenced the news organizations’ reporting that she believed it was crucial to maintain oversight. She argued that a lack of crisis support and specialty services had contributed to the state inappropriately placing people in state-operated developmental centers. Once there, she said people struggled to return to the community in a timely manner because of additional state failures to help people identify new community placements and develop independent living skills that would ease the transition. In a prior court filing, Equip for Equality, the plaintiffs’ attorney, made similar arguments and also expressed alarm about safety issues inside the facilities.

In her ruling, Coleman acknowledged that while the state had made “significant progress” since 2011 in expanding community-based services, it had not fully met the mandates of the consent decree. Her one-page decision denying the state’s request to end oversight did not provide specific opinions on these issues but indicated that they will remain the focus in future proceedings.

Judge Sharon Johnson Coleman of the Northern District of Illinois ruled against the state of Illinois’ request to end court oversight of its disability services. (Illustration by Capitol News Illinois, with highlight added)

A spokesperson for the Illinois Department of Human Services said the agency is reviewing the order to determine next steps.

“We are proud of the significant progress that has been made by our administration to date, and we remain committed to ensuring that individuals with intellectual and developmental disabilities have the opportunity to live in the least restrictive setting of their choosing,” the spokesperson said.

Equip for Equality praised the judge’s ruling, saying more work still is needed.

“People with these disabilities have a right to live fully independent lives in the community,” Zena Naiditch, Equip for Equality’s president and chief executive, said in a statement. “Sadly, Illinois is a national leader in placing people with disabilities in institutions, relying on antiquated, discriminatory service systems.”

Heidi Dalenberg, interim legal director at the ACLU of Illinois, which filed the original lawsuit nearly 20 years ago, also welcomed the ruling. She said in a statement that thousands of people in Illinois are still trapped in institutional care against their wishes.

“It has been clear for years that the key to solving this problem is for Illinois to invest its energy in building a strong network of community-based resources,” Dalenberg said.

Samantha Alloway, executive director for The Arc of Illinois and the mother of a 9-year-old who is on the autism spectrum, said she worries about continued care for her son in the event she could no longer provide it. She expressed relief that the court will maintain oversight and continue to hold IDHS accountable.

“We give credit to the Pritzker administration who has invested more in people with developmental disabilities than any administration in history, but while we are grateful for the unprecedented support of this administration, there is still so much to do,” Alloway said.

Alloway said she hopes IDHS will use this time to “aim higher” and grow community services to allow continuity of services for people with developmental disabilities as they and their caregivers age.

“This can be a time to plan as people move from home-based services to community-based services so we aren’t just going from one crisis to another,” Alloway said.

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.