DOJ Investigation Threatens Illinois’ Disability Care Facilities

The Department of Justice is reportedly investigating whether Illinois “unnecessarily institutionalizes, or puts at serious risk of institutionalization, adults with intellectual and developmental disabilities.” For disability-rights advocates, the inquiry offers a chance to pressure the state to close facilities they have long opposed. For people in Illinois who rely on this form of care, the investigation threatens their homes—and, if it results in an unfavorable consent decree, even their lives.

Illinois operates seven public institutions for people with intellectual and developmental disabilities (I/DD), more than almost any other state. These facilities, large campuses built in the nineteenth and twentieth centuries, provide medical and behavioral services designed to serve the most severely disabled individuals. Unlike psychiatric hospitals, the overwhelming majority of those living in these institutions are doing so voluntarily.

Advocacy groups in Illinois have long pressured the state to close its public facilities, which they claim “segregate” and unnecessarily limit the freedom of people with disabilities. In 2015, one such group, the Arc of Illinois, called on the state to shutter six of the seven institutions by 2020 and relocate residents to alternative settings. The Progress Center for Independent Living, one of a network of 22 centers in the state that “advocate for the rights of people with disabilities,” called on Governor J. B. Pritzker to “take immediate steps to close the remaining State Operated Developmental Centers in Illinois” and to reduce the amount of public money spent on “the segregated, warehousing of people with disabilities.”

Despite advocacy groups’ claims that Illinois has a large institutional footprint, the state serves the overwhelming majority of its I/DD citizens in “community-based settings.” As of 2020, about 80 percent of people with I/DD receiving residential services lived in Community Integrated Living Arrangements (CILAs), in which eight or fewer disabled adults share a staffed group- or family-home environment. The remaining 20 percent lived in “institutional” settings—15 percent in institutions such as private intermediate-care facilities, nursing homes, or psychiatric hospitals, and 5 percent (typically, the most severely disabled) in the state-operated disability facilities.

Aaron Janzon is a resident of one of those facilities, the Shapiro Developmental Center. According to his mother, Joan, he is autistic and intellectually disabled. In high school, Aaron was hospitalized following a “nervous breakdown” during which he struck a houseguest and later threatened to cut off his own hands.

After the hospital discharged him, Aaron’s parents placed him in a CILA about three miles from their home. His behavior worsened, as he continued to harm himself and others. His parents placed him in another CILA, but that didn’t work, either.

“The CILA didn’t know what to do with him,” said Joan. “So they just put him in a car and dumped him in the psych ward.”

Then, at a psychiatric hospital, staff put Aaron in a helmet and restraints to prevent him from engaging in self-injurious and violent behaviors. Joan claims he wasn’t bathed or shaved and had lain in a bed at the hospital for “several weeks.” Cuts in his head became infected beneath the helmet as he bashed his head against the wall.

Desperate, Joan found the Shapiro Developmental Center, a mammoth state facility set on hundreds of acres in Kankakee, Illinois. More than half of its nearly 470 residents receive psychotropic medication, and almost 90 percent have a specialized behavioral intervention program.

“By the time I was leaving Shapiro, [after] that first meeting, he was completely different,” said Joan. “They had removed the helmet, they cut his hair, they shaved him, he was bathed, he had clean clothes on. He wasn’t happy—he was in restraints, just like they told me he would be. But he was totally different.”

It took four years for the staff at Shapiro to stabilize Aaron and to wean him off the drugs he had been given at the psychiatric hospital.

“Now he is happy, healthy, adjusted,” Joan said. “He still goes through times of anxiety and crisis, but because of the structure of Shapiro, they are able to jump on top of it immediately so he doesn’t end up hospitalized again.”

At Shapiro, Aaron works at an on-campus vocational center. He takes frequent trips off campus into the surrounding community. His mother said he has a girlfriend, another resident, whom he “really likes.” He enjoys exploring Shapiro’s expansive campus and is free to leave with family for home visits. He has told his mother that he likes it there because “it makes him less anxious.”

“He’s got friends. He feels like that is his home,” said Joan.

That home could be threatened if the Department of Justice’s investigation results in a consent decree that requires the closure of the state facilities.

Joan speculated that Equip for Equality, an advocacy group that has intervened in past deinstitutionalization suits, may have helped spark the DOJ investigation. After ProPublica reported on the DOJ investigation, Andrea Rizor, an attorney for Equip for Equality, noted her hope that the inquiry would “shed light on” Illinois’ “antiquated system” and ensure that “people with developmental disabilities truly have the opportunity to successfully live as part of their communities.” On its website, Equip for Equality insists that “Community living can work for everyone,” no matter how severely disabled.

Illinois designates Equip for Equality, which did not respond to a request for comment, as the state’s sole protection and advocacy (P&A) organization. The P&A system is a federal program that empowers qualified groups to investigate abuse and neglect in state mental-health and disability systems. P&A-filed lawsuits have been among the biggest drivers of deinstitutionalization across the country.

These lawsuits often blindside residents of institutions and their families, and are intended to effect “systems change”—the downsizing or closure of institutions. In 2005, for example, Equip for Equality joined the state ACLU chapter in filing the Ligas suit against the state of Illinois. Eleven disabled individuals, some represented by attorneys for Equip for Equality, filed a class-action lawsuit on behalf of the roughly 6,000 people with disabilities living in institutions in Illinois at the time. In the suit, they described the facilities as “segregated, isolated institutions that deprive” people of their “basic liberties.”

Bill Choslovsky, a Harvard-educated attorney whose disabled sister lived at a privately operated institution in Illinois, gathered 2,500 objectors to file a joint motion to intervene. His action ultimately prevented the lawsuit from resulting in a consent decree that would have closed all the state’s institutions.

But residents of other states’ institutions often lack a legally skilled guardian like Choslovsky to organize a successful intervention. In those states, activist lawsuits often succeed in reducing resident populations—or closing the facilities entirely.

Georgia, for example, signed a consent decree with the Department of Justice in 2010 to avoid an expensive lawsuit following the DOJ’s complaint. The state agreed to halt the admission of people with I/DD to state-operated institutions and to attempt to transition all developmentally disabled residents of such facilities “to the community.” Within three years, 62 of the 500 patients moved out of the public institutions had died.

Joan Janzon’s biggest fear is that this investigation will result in a similar policy, forcing her son to leave Shapiro.

“That scares the hell out of me every day.”

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