Major story to follow out of Illinois. Investigative reporters Michael J. Berens and Patricia Callahan published an expose of widespread abuse and total lack of oversight in group homes for people with disabilities in Illinois. These homes, known as Community Integrated Living Arrangements, or CILAs, are all over the state, theoretically regulated, but in fact there's very little oversight.
Here's the first piece in what is to be a very grim series:
In the first comprehensive accounting of mistreatment inside Illinois' taxpayer-funded group homes and their day programs, the Tribune uncovered a system where caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.
The Tribune identified 1,311 cases of documented harm since July 2011 — hundreds more cases than publicly reported by the Illinois Department of Human Services.
Confronted with those findings, Human Services officials retracted five years of erroneous reports and said the department had launched reforms to ensure accurate reporting.
To circumvent state secrecy, the Tribune filed more than 100 public records requests with government agencies. But state files were so heavily redacted and unreliable that the newspaper had to build its own databases by mining state investigative files, court records, law enforcement cases, industry reports, federal audits, grant awards and Medicaid data.
The Tribune found at least 42 deaths linked to abuse or neglect in group homes or their day programs over the last seven years. Residents fatally choked on improperly prepared food, succumbed to untreated bed sores and languished in pain from undiagnosed ailments.I'm not going to include any of the descriptions of specific cases of assault, neglect, sexual violence, or other forms of abuse, but they are powerful and worth reading. This is optimal investigative journalism, casting light on harms done to the vulnerable.
Part Two of the series focuses on the failed investigations. I spoke with Michael Berens over the phone, and he tells me that while surely the ongoing budget crisis in Illinois doesn't help, the system goes back well over a decade. Berens came to the Tribune from Seattle, where he wrote a series on the housing of seniors in sort of ad-hoc nursing homes within people's houses. "Seniors for Sale," the prizewinning series, set him up well to investigate CILAs in Illinois. It's the kind of journalism we'd all like to be able to do, so congratulations.
Already today Illinois lawmakers have convened a hearing (and I wish my day job allowed me to go to Springfield to sit in on it, but such is not the life of the freelancer/professor/daddy)
The question is what should happen next. CILAs emerged out of the de-institutionalization movement post-Olmstead. Although surely many hundreds of them provide excellent living environments, they aren't really genuine, organic, community integration. Nor do I believe that one mode of housing is optimal for every single person with a disability, just as I don't believe in one single mode of education or work. Inclusion, as I always say, is not same-ness. Still, I worry that this kind of expose could lead risk-adverse lawmakers and the pro-institutionalization folks (who are powerful in Illinois, embodied by institutions like Misericordia and groups like VoR - formerly Voices of the Retarded, a parent group) to capitalize on the abuse and slow the process towards genuine community.
Over email, I asked Sam Crane of the Autistic Self Advocacy Network about the cases. Crane wrote:
These statistics regarding abuse and neglect in group homes are more or less consistent with the ones concerning nursing homes and other institutional settings. The degree of abuse and neglect in these types of settings is truly frightening. We know that while group homes are often characterized as "community-based" options, many effectively operate as small institutions.I've heard similarly from other disability rights advocates, including folks based in Illinois. They aren't shocked at the problems with CILAs. They do want more oversight. They want protection and justice for the victims. But they also want to note that bigger institutions are NOT safer for people with disabilities.
People with disabilities are safest when they maintain close connections with friends and family members in their community, who are in a position to notice signs of abuse or neglect and help to report it. People are also safest when they have the ability to hire and direct their own support staff. This is easiest to accomplish when people with disabilities live in their own homes or with friends or family, using individualized services and supports.
In group home and institutional settings, administrators may not consider the early warning signs that a staff member may be neglectful or abusive - such as mysterious injuries, resident complaints, or residents showing fear or avoidance toward the staff member - to be sufficient reason to replace the staff member. However, when individuals have the opportunity to self-direct their services, they can act on these early warning signs promptly, preventing escalation of abuse.
Much more to come on this story as new pieces emerge and the state responds.