Since 2003, the deaths of 53 disabled adults were reported to, but not investigated by, the Illinois Department of Human Services - until a newspaper probe shed light on those stories.
Margie Wade was trapped. She was too weak to move. Even to close her eyes.
The 59-year-old disabled woman, critically ill from severe diabetes, lay unconscious; face down on a plastic mattress cover that adhered to her body so tightly it would have to be cut away. She wore only a shirt.
Instead of dying among family and friends, much of Wade’s last day alive was spent alone in a feces-ridden bedroom so foul that her uncaring husband wouldn’t enter. Her bottled oxygen had run out weeks before. She hadn’t seen a doctor in more than a year.
Except for vanilla pudding that her daughter had spooned into her mouth the previous day, the Montgomery County woman hadn’t eaten for nearly a week.
Like Margie Wade, many Illinois women and men afflicted with disabling and often-fatal illnesses reject nursing homes and other institutionalized care centers and choose to live out their remaining time at home in familiar surroundings.
However, for more than 50 of those disabled Illinois adults, staying in their own beds led to an unexpected and cruel trap: Instead of receiving increased care as they grew weaker, they were neglected or abused or both by caregivers, according to an ongoing Belleville News-Democrat investigation and series of articles first published in late June.
And perhaps more disturbing: The state agency charged with protecting them failed to investigate their deaths, citing a loophole in Illinois law.
The newspaper’s reporting included other grim accounts of mistreatment. A woman in her late 50s was brought unconscious to a hospital. She was covered with open sores. A maggot-filled abscess in her neck was infected. Another disabled woman, also in her late 50s, was treated by an emergency room physician for deep scrapes and bruises from head to toe on one side of her body after being dragged across a concrete floor by her mentally impaired caregiver. The victim was covered in feces and unable to communicate.
Both women were transferred to a hospital intensive care unit and died a few days later. Their deaths, both in 2009, became part of a grim statistic hidden from the public: Since 2003, at least 53 disabled adults living at home died soon after being hospitalized on an emergency basis. Their deaths came within hours or days of calls made to a statewide hotline alleging they were being mistreated. Hospital personnel made nearly half of the calls to the hotline.
But none of those deaths were investigated by the state agency responsible for protecting disabled adults ages 18 to 59 who live at home, and looking into charges of neglect and abuse — the Office of the Inspector General for the Illinois Department of Human Services.
The reason the OIG gave for not investigating: “The dead are ineligible for services.” That’s how the agency’s officials have for years interpreted the Abuse of Adults with Disabilities Intervention Act of 2000, which led to the agency’s current Disabled Adults Program.
Asked to explain why it does not investigate when a person dies, the OIG’s spokeswoman responded: “The OIG is performing the duties mandated by statute: ... We don’t have the jurisdiction or the resources to conduct activities that are not included in the law.”
Neither then-Inspector General William M. Davis nor his boss, Michelle Saddler, head of the Department of Human Services, would agree to be interviewed. The OIG responded to questions from the newspaper — and continues to respond — solely through its spokeswoman, Januari Smith Trader.
Two former Republican legislators responsible for helping to pass the statute were incredulous when they learned that death prohibited an investigation by a unit of state government that on its website lists investigating and preventing mistreatment as its top priorities.
“Not investigating because of death is beyond the realm of comprehension,” said former state Rep. Arthur Tenhouse of Quincy.
Allowing such a policy to continue is “criminal inaction,” said former state Rep. Lee Daniels of Elmhurst, who urged the state legislature to investigate. “It breaks your heart to see anybody subjected to this kind of abuse and the state not taking appropriate action,” he said.
State Sen. Bill Haine of Alton, a Democrat and former prosecutor who was not in the legislature when the law was passed but who has since taken a proactive stance in reorganizing the agency, commented, “It’s been a while since I led an investigation, but I seem to recall from my time as state’s attorney that when someone dies, that’s usually a good time to ask questions, not close the books.”
The newspaper’s articles soon led to the resignation of Davis, a former Illinois State Police regional commander, who had been in the position for six years. He made no public comment concerning his departure and left August 1. An interim inspector general has been appointed.
After reading the News-Democrat stories and being questioned by reporters at the tail end of a Chicago news conference about whether he intended to act, Gov. Pat Quinn sent his own investigators to check the reported accounts.
In an executive order announced July 6, Quinn ordered a complete revamping of the way the OIG investigates allegations of neglect and abuse in its Disabled Adults Program. On July 27, he appointed Michael McCotter, a former chief of detectives with the Chicago Police Department, as special investigator. The executive order requires agency investigators to reopen the cases of all 53 disabled adults mentioned in the newspaper series and to fully investigate each.
The probe is authorized to go beyond the failure to investigate death cases to include scrutiny of the large number of “non-reportable” cases that the DHS inspector general’s office listed in its annual reports. The News-Democrat’s investigation showed that a hotline operator was able to reject any case that he or she determined on the spot did not qualify for an investigation, thus making it “non-reportable.”
Under the agency’s practices, that could be taken to mean that if in the opinion of the hotline operator, and without actually talking to the disabled adult, a determination could be made that the person is able “to seek help on their own,” a finding that would mean the call for help would be rejected.
The largest number of non-reportables was listed under a classification referred to in annual reports as “none needed,” meaning another agency was supposedly already helping the disabled person. However, this once again required the hotline operator to determine during the call whether help was needed. If the caller happened to mention that police or any other agency had been contacted, the call would be rejected, according to one former hotline operator.
The inspector general’s office responded through Smith Trader that it did not make follow-up calls to make sure another agency was indeed helping the disabled adult. She said that was not required under law.
The most recent OIG annual report showed that in fiscal 2011, hotline operators rejected 534 calls for help, or about 41 percent of the total of 1,289 calls received. That number included 405 “non-reportable” calls, nearly double the previous year’s total. Smith Trader declined to comment about why the number would increase so sharply, except to repeat her earlier statement that the agency was acting according to statute.
Calls for help were also rejected for investigation if the disabled person refused to consent. Consent is a requirement of the law, but there are no clear rules governing how it is determined or whether any member of a household who answers a knock at the door can tell a concerned relative or caregiver that no assistance is wanted.
The deaths were excluded from the agency’s annual reports. The Illinois Freedom of Information Act provided a way to learn part of the story. The agency eventually provided redacted documents, each ironically titled “Investigative Report,” for each of the 53 uninvestigated deaths. The documents contained no names or locales but confirmed that each case was terminated without an investigation because the disabled person had died.
In the beginning, the only way to figure out which of the thousands of cases the agency handled over the years were death cases was to know the identity of the deceased adult and the OIG case number associated with the death. The newspaper accomplished that through sources it will not reveal by obtaining copies of summaries of hotline calls that listed names, locales and the all-important case numbers. The hotline records do not fall under state open records laws and are protected from release by state law except through court order.
Upon learning that the News-Democrat had some of these records, Smith Trader sent an email to the newspaper’s executive editor raising the possibility that a reporter had broken state law. The newspaper’s legal counsel determined that the reporter had done nothing illegal by possessing the records.
The reporting also included detailed accounts of disabled persons who were the subject of hotline calls that were “substantiated” for abuse or neglect time and again after an OIG investigation. But relatively few of the substantiated cases resulted in the removal of the disabled person to a safer setting.
In Fiscal Year 2011 — which ran from July 1, 2010, to June 30, 2011 — DHS’ inspector general’s office investigated a total of 755 cases, and 124, or about 16 percent, were substantiated for neglect or abuse, except for several financial exploitation cases. Of that number, only 22 disabled persons were removed from a home for their own safety and placed elsewhere.
The six-month Belleville News-Democrat investigation showed that caregivers, usually spouses and children of the disabled, often isolated their incapacitated family member and stole or misappropriated the disabled person’s assistance checks. In many cases, concerned relatives and health-care workers who tried to intervene were sent away after being told by someone in the home other than the person with the illness that no help was needed.
In extreme situations, which members of Quinn’s staff privately said shocked the governor, severe neglect in their final months or weeks before dying left helpless victims lying in their own waste, too weak from disease or their medical conditions, sometimes coupled with a lack of proper food and medicine, to use a telephone to call for help or even get out of bed to make it to the bathroom. Some disabled adults who could still get out of bed said they were afraid to ask for help for fear of retaliation from a caregiver or family member, according to interviews and several unredacted case files that reporters managed to obtain.
When Margie Wade was found by an ambulance crew in that roach-infested, feces-littered bedroom where she had languished for months in early 2003, shocked EMTs thought she was dead. Her body was in a rigid state that they first thought to be rigor mortis. Her eyes were open and unblinking. Wade was oblivious to roaches that crawled over her and hid in her hair as a medical team tried to find her pulse. Somehow, she was still alive but would die four hours later in a Hillsboro hospital.
In all but a few of the death cases the newspaper investigated, county coroners or the Cook County Medical Examiner conducted no autopsy or toxicological testing.
Local police investigated in five cases, including Wade’s death, which was the only instance where a charge was brought.
However, a pathologist who ruled Wade’s death as due to “natural causes,” despite the many details of neglect, unknowingly undermined the criminal case against her husband, a Montgomery County sheriff’s investigator said. The finding led to the reduction of a felony neglect charge against her husband, Leonard Wade, to a misdemeanor. He pleaded guilty and was given a conditional discharge and sentenced to perform community service.
Leonard Wade admitted to deputies that he had used a broom to jab his wife in the side when her moaning kept him awake. He described it as a “caress” and simply a way to get her attention without having to enter the horribly foul-smelling bedroom. However, Margie Wade’s disabled daughter described it this way in a police report, “Dad whacked Mom with a broom to shut her up.”
State law requires that when criminal abuse or neglect of a disabled person is suspected, the OIG for DHS must contact the local coroner and assist in any investigation. That requirement was apparently an earlier concern at the agency because even before the first newspaper articles ran, and after the OIG received written questions from reporters, the office revamped its policy to include a requirement that police also must be contacted.
The requirement to contact county coroners when abuse or neglect is suspected in a death became an issue when reporters heard unofficially that employees in the coroner’s offices in St. Clair and Madison counties not only had no record of receiving calls from the OIG but could not remember ever receiving these kinds of calls.
In the newspaper’s subsequent survey of 10 of the state’s largest counties, including Cook, coroners, medical examiners or their assistants said they could not remember ever receiving calls from the OIG stating that criminal abuse or neglect was suspected in the death of a disabled adult.
“Why is someone dropping the ball and not notifying authorities?” asked Madison County Coroner Steve Nonn, head of the Illinois Coroner’s Association.
Mary Paleologos, spokeswoman for the Cook County Medical Examiner’s Office, said she conferred with her unit’s chief of investigations for 23 years, Tony Brucci, who, she said, could not ever remember getting a call from the inspector general’s office for DHS about alleged mistreatment of a disabled adult who died.
Despite the survey of coroners, Saddler, the DHS director, told members of the state House Human Services Committee, which met in Chicago on July 31 concerning the revelations in the news articles, that the calls had been made, but a proper record of them wasn’t kept.
The committee chairman, state Rep. Greg Harris, a Chicago Democrat, replied that the coroners “have a different recollection.”
Saddler said her agency will make all changes deemed necessary, and added, “We strive to have what we call a culture of caring.”
Harris said the legislative committee will schedule a second session to assess whether adequate progress has been made toward eliminating deficiencies in the agency, or possibly to discuss whether a revised law that would better protect disabled adults is needed.
The state’s newfound concerns came too late for Margie Wade, though. She was buried in a cemetery in Edwardsville. Her grave is unmarked.
George Pawlaczyk and Beth Hundsdorfer are investigative reporters for the Belleville News-Democrat. Their numerous journalism honors include the prestigious George Polk Award in 2009 for a series on harsh conditions at the Tamms maximum-security prison and a 2007 National Robert F. Kennedy Journalism Award for reports on how the Illinois Department of Children and Family Services mishandled the cases of more than 50 children who died while under state care.
Illinois Issues, October 2012