The homes — and the problems inside them — were meant to be invisible. While reading a routine state report, reporter Michael J. Berens noticed that Illinois had licensed more than 3,000 Medicaid-funded group homes that cared for nearly 12,000 adults with intellectual and developmental disabilities, many of whom also were diagnosed with mental illness. But when Berens asked for the homes’ addresses and enforcement histories, Illinois declared the information confidential under law. Indeed, it was. Over the decades, Illinois lawmakers had exempted the group home industry from basic health care regulations and public accountability. Neither the public nor family members — not even group home residents — were allowed to know whether the state had pursued complaints against a home or the caregivers it employed, the nature of investigations, the strength of evidence or what reforms, if any, were mandated or made.
While state officials said they were protecting the residents’ medical privacy, this information blackout made it impossible for anyone to discern which group homes were safe. Many weren’t. Undeterred, Berens and reporter Patricia Callahan embarked on a yearlong investigation. They revealed that state officials, who touted the taxpayer dollars saved on this cheaper form of care, steered thousands of Illinois’ poorest and most vulnerable adults with disabilities into private group homes, then cloaked harm and death with secrecy and silence.
Drawing on records gleaned from more than 100 FOIA requests, the reporters circumvented state secrecy to show that many homes were underfunded, understaffed and dangerously unprepared for residents with complex needs. The Tribune revealed that Illinois officials, hurrying to empty a state-run institution, held an auction during which they read aloud the medical histories of residents and asked group home executives to raise their hands for desired picks. Spurred by court decrees and a growing disability-rights movement, most states have closed some or all of their institutions and shifted funding to community-based residences like group homes.
But in Illinois, not enough money has followed the people. Group homes have gone nearly nine years without an increase in reimbursement rates for staff wages. Overall, Illinois consistently ranks among the lowest five states for financial commitment to community care. The Tribune also revealed how Illinois significantly undercounted abuse and neglect cases in public reports on group homes for five years. The Tribune identified 1,311 cases of harm since July 2011 and tracked at least 42 deaths in group homes or their day programs over the last seven years. Additionally, the Tribune uncovered a secretive state practice that allowed group home employees to police their own businesses.