Hidden suffering, hidden death:

State agency won't investigate after 53 deaths of those in its care

(MCT) — The state agency created to prevent neglect and abuse of disabled adults who live at home rejects hundreds of hotline calls for help each year and doesn't investigate when people die after severe mistreatment.

The Office of the Inspector General for the Illinois Department of Human Services received broad powers through legislation in 2000 that expanded its responsibility for protecting physically and mentally disabled people who live outside community facilities and state institutions. The OIG, which operates independently, investigates neglect and abuse complaints made to a statewide hotline operated by the agency.

But when the subject of a hotline call is hospitalized and dies soon after, the OIG closes the case without investigating the circumstances surrounding the death because of the agency's interpretation of state law. According to OIG documents, the agency is prohibited from investigating the moment a death occurs.

The OIG considers such an investigation a "service," and the dead are "ineligible for services" under the agency's interpretation of Rule 51 -- a legislative directive that governs the Adults with Disabilities Abuse Project, the OIG documents state.

The Belleville News-Democrat discovered 53 cases since May 2003 that fit this pattern: Neglect or abuse of a critically ill, disabled adult in their home, followed by an ambulance ride to an emergency room and death, usually within a few days or weeks. In some cases, disabled, often critically ill people were starved, left to suffer in pain, denied medication or forced to lie for days in their own feces and urine. Some who died were unable to move when ambulance attendants found them.

None of the deaths were investigated by the OIG or listed in the agency's annual reports. By comparison, Illinois law requires that the OIG review every death in a state-paid facility. If a review indicates abuse or neglect, the case is investigated.

It's crucial that the OIG and police investigate the deaths of disabled adults, "regardless of whether they are in domestic settings or in facilities," said Zena Naiditch, president and CEO of Equip for Equality, a federally mandated organization in Illinois dedicated to preventing the abuse of people with disabilities.

The OIG neither has the responsibility nor manpower to investigate the deaths of disabled adults living in their own home, spokeswoman Januari Smith-Trader said.

"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," she said.

Top state officials declined to talk about how the agency operates. OIG Director William M. Davis, a retired Illinois State Police regional commander, initially agreed to an interview, but Smith-Trader later said that neither Davis nor his boss, Department of Human Services Secretary Michelle R. B. Saddler, were available.

In subsequent emails, Smith-Trader accused a reporter of possibly breaking state and federal privacy laws by being in possession of private case summaries not open to the public.

The Adults with Disabilities Abuse Project was the result of the Abuse of Adults with Disabilities Intervention Act signed into law on July 1, 2000, which brought disabled people ages 18-59 living at home under the umbrella of the OIG. The program has five field investigators and a supervisor. Statewide, the OIG lists 53 employees and operates on a $5 million annual budget.

State lawmakers who wrote and helped pass the Adults with Disabilities Intervention Act said they were shocked to learn how the law has been applied.

If the OIG doesn't investigate deaths that result from possible neglect or abuse, they asked, how can it hope to prevent further abuses and deaths?

"This was certainly not the intent of the law," said former state Rep. Art Tenhouse, R-Quincy, the lead sponsor of the bill and former House minority leader. "Not investigating because of death is beyond the realm of comprehension. ... It's just scary. It's like saying police wouldn't investigate a suicide because the person is dead."

The law in part reads: "This Act shall be liberally construed and applied to promote its underlying purposes, which are to prevent, reduce and eliminate abuse, neglect and exploitation of adults with disabilities."

"It breaks your heart to see anybody subjected to this kind of abuse and the state not taking appropriate action," said former state Rep. Lee Daniels, R-Elmhurst, who helped guide passage of the bill. "To allow this to continue is criminal inaction."

Thomas F. Coleman, the attorney for the Disability and Abuse Project in Los Angeles, a private coalition of medical professionals and volunteers dedicated to assisting the disabled, reviewed the 2000 Illinois statute and Rule 51.

"These laws do not state that an investigation need not be done if the victim is not receiving services. So the 'no services because they are dead' excuse is just that -- a shallow and meaningless excuse for closing a case. There is no statutory authorization to close an investigation or refuse to initiate one because the victim is dead," he said. "Whoever came up with that rule should be exposed."

Daniels, the former House speaker who left the Legislature in 2006, called for an inquiry by the General Assembly. He is the father of a disabled daughter.

"I think this is a case where the authority of the Legislature can be utilized properly by a statewide investigation," he said. "If you don't take this action, how do you force (the Department of Human Services) to do the appropriate investigations and response the law clearly calls for? People could be dying as we speak."

Death, case closed

Nurses, doctors, social workers or hospital staff called the state abuse hotline in nearly half of the 53 deaths examined by the News-Democrat. But even demands from medical professionals asking why a disabled adult ended up in their emergency room, often in horrible condition, did not prompt the OIG to investigate.

Those deaths included Barbara Coleman, a 56-year-old Pittsfield woman dying from kidney failure who was taken to a Springfield emergency room on Nov. 18, 2009, with a large abscess on her neck filled with maggots. She died two days later.

"Based on the facts here, we conclude the following: (Coleman) passed away at the hospital and the assessment could not be completed. Therefore, we stopped this assessment process without a finding," the OIG case file concluded.

Bonnie Matyasik, 51, who was suffering from end-stage cirrhosis, arrived at an emergency room Jan. 26, 2009, near Chicago with dried feces in her hair and under her fingernails. Matyasik was bruised and scraped along one entire side of her body from being dragged across a concrete floor by her mentally impaired caregiver. She died two days later.

On May 6, 2011, authorities responding to a 911 call found Kevin Kage, the 1986 Illinois multiple sclerosis poster child, lying in a bed soiled with feces and urine, unable to move and covered with bedsores that had eaten through flesh to the bone. The 33-year-old Kage died the next day in the intensive care unit of a Wisconsin hospital.

Because these people died, the OIG deemed they were not eligible for services.

Advocates for the physically or mentally disabled say death investigations are essential to developing better ways to protect and save lives.

"It seems self-evident that abuse can cause death, and if they (OIG) are supposed to prevent abuse and neglect, they ought to investigate suspicious deaths," said Tom Kennedy, a Clayton, Mo., attorney who specializes in representing disabled adults.

Kennedy said investigators should give consideration to family caregivers who may be overwhelmed by a loved one's deteriorating medical condition, but he warned: "If a family member was wishing for the death of a disabled person and hastening their death by not feeding or treating them, that ... should be investigated."

Investigating after a death may identify those "who perpetrated the death, either through neglect or failing to provide essential medical needs or food and water, among other things," said Nora Baladerian, a psychologist and project director of the Disability and Abuse Project in Los Angeles.

By the numbers

The News-Democrat obtained internal OIG case files and summaries of calls to the state hotline during a nine-year period from May 2003 to January 2012. Through these files, plus Social Security death records and a computer analysis of repeat calls to the domestic abuse hotline, the newspaper confirmed that the OIG received allegations of neglect and abuse in all of the 53 deaths but didn't investigate.

The newspaper's investigation also found:

* The Office of the Inspector General rejected as "non-reportable" a record number of calls for help in fiscal year 2011, ending in June. Hotline operators declined to refer 534 calls to field investigators, or 41 percent of the 1,289 calls received. Total non-reportable calls for this year were up by 23 percent. Total calls coming into the hotline were up by 12 percent.

The OIG uses the term "non-reportable" to indicate calls that are not accepted for investigation. The reasons may include that the issue has been resolved; the victim does not live in a private residence; the person is outside the 18-59 age range, or he or she is not considered disabled or impaired.

* Of the 755 cases accepted for investigation last year, case workers substantiated abuse or neglect in 124 cases, or 16 percent -- the second-lowest rate since 2005. Of those, 22 disabled people statewide were removed on an emergency basis from an abusive home setting.

* A total of 405 of the 534 non-reportable calls were rejected because a hotline operator determined that the disabled person already was getting help elsewhere or the issue had been resolved. This was nearly double the 210 calls in 2010 where no action was taken.

Smith-Trader, the department spokeswoman, said the agency made no effort to make sure these calls had been properly resolved.

"Per state statute, the OIG is not required to investigate non-reportable cases," she said in a written statement.

The decisions to not accept hotline calls, thus making them non-reportable, are made by hotline operators, who also are trained as investigators, Smith-Trader said.

* The hotline received thousands of repeat calls, reporting the alleged abuse or neglect of 1,040 people during the nine-year period. An analysis of internal OIG records showed that 67 of these disabled adults were found to have been abused or neglected more than once.

In 12 cases, there were three substantiated allegations of abuse, and in three cases, there were four. The analysis also showed that 41 disabled adults were abused or neglected after the OIG delayed investigations, sometimes by years, when hotline investigators rejected allegations.

* In five of the 53 death cases, the OIG notified local police, but none of these cases resulted in a felony criminal conviction. Whether police were notified in the remaining 48 cases is unclear. In a case involving a 59-year-old Montgomery County woman suffering from end stage multiple sclerosis, local police investigated on their own, which led to the woman's husband pleading guilty to misdemeanor neglect. He received community service as a punishment.

On its website, the OIG says that if it cannot help, it will refer callers to the local police or another state agency, such as the Illinois Department of Aging or Department of Children and Family Services. That happened in 126, or 24 percent, of the non-reportable calls in 2011.

* The agency's day-to-day practices allow hotline operators to reject calls for help if, in their opinion, based on what they are told during the phone call, the disabled adult has the ability to use a telephone and call for help on his or her own. The agency considers this to mean that the disabled person is not impaired enough to qualify for assistance, according to recently retired hotline operator Jeff Edmonds.

"This is just for people who can't use the phone," he told a reporter just days before his retirement in May.

'I had to save myself'

A framed color photograph on his bedroom dresser shows Jeffrey Camacho five years ago when he helped sell luxury British automobiles as marketing director at a Bentley dealership in Chicago.

He became stricken with Parkinson's Disease, a severe and degenerative nerve disorder, which got progressively worse. He became officially disabled.

In 2010, the 48-year-old Camacho lived in Edwardsville, where a relative cared for him. He claimed the relative was not feeding him properly. Eventually he became emaciated. He estimated his weight then at about 120 pounds. His normal weight is 170.

By this time, Camacho's condition was so extreme that, while awake, he convulsed violently. His arms lashed from side to side. His torso flailed and twisted as he sat up in bed. Except for short bouts when medication slowed this involuntary thrashing, he said it continued each day until he became so exhausted he fell asleep.

One day last year, an OIG investigator showed up at the door. Camacho said he learned his doctor was worried about his weight loss and had called the state abuse hotline. He said the investigator generally discussed Camacho's living conditions and left. But in response to a second hotline call from the doctor, the investigator showed up again and gave Camacho an ultimatum: Leave with him immediately or stay. Camacho said he declined to leave because he had no place else to go and was worried about where he would end up.

"He said he would take me in the car and we would go somewhere. I had no idea where they were going to take me or what would happen to me," he said. Camacho declined to go and the investigator left. He said afterward his relative became angry because she thought Camacho had called the hotline on her.

"It just got worse from there," he said. "It just reached a level of hostility and never let up."

Two more visits from the investigator came in 2011, and each time the same thing happened. Camacho stayed, but his weight continued to drop.

"By the third time the guy came, he was telling me there was really nothing he could do," Camacho said.

Finally, as the result of a fourth hotline call on May 19, 2011, another state investigator showed up. This time, Camacho told him to not bother coming back.

Frantic to get out of his situation, Camacho managed to walk outside during a respite in his convulsions and talk to a neighbor who said she and her husband would help. This time, Camacho didn't hesitate and left with her for the day.

The neighbors helped get him into a nursing home and a month later, when that didn't work out, helped him find a mobile home that he rented with money from his Social Security disability check. A paid male caregiver comes in for four or five hours per day to assist Camacho.

"I had to save myself," Camacho said, "because the inspector general told me if I didn't leave right away there was nothing they could do. They just made things worse. I wasn't going to just leave and not know if I was going to a worse place or even where I was going. I had to save myself."

Brother to the rescue

In oddly parallel cases, calls to the state abuse hotline spanning several years failed to prevent neglect and abuse of two vulnerable women, both of whom were left to endure severe mistreatment until relatives rescued them.

Nola Lane, 59, of Belleville, suffered from Huntington's chorea, a fatal brain disease. Beginning in March 2007, relatives made the first of nine hotline calls to complain that her caregivers were not giving her enough food or medicine and diverting her federal assistance checks. They denied any wrongdoing.

This ultimately was reported through an OIG investigation that began on April 8, 2009, more than two years after the first hotline call and a day after Lane's brother, Mike Bosick, took matters into his own hands and rescued his sister from her home.

Bosick, of Lebanon, said he grew weary of waiting for the OIG to act.

"We were frustrated. It did no good to call the hotline. We didn't know what to do," he said.

Finally, he went to where the frail woman lived, took her into his arms and said, "Sis, do you want to go to a hospital?" After she nodded yes, Bosick said he didn't leave until an ambulance showed up and took her to St. Elizabeth's Hospital. She weighed 77 pounds.

The OIG report that substantiated neglect in Lane's case, after her brother had rescued her, stated that the caregivers regularly ordered that her pills be broken in half to save money on medicine and bought only pies, cookies and other sweets for Lane to eat.

Of the earlier calls to the hotline, two were rejected and three were unsubstantiated after an investigator spoke briefly with Lane on the phone with one of the caregivers nearby, Bosick said.

Two other calls were unfounded, meaning no credible evidence was found.The agency received the eighth call on March 5, 2009, but an OIG investigator told his supervisor that Lane would not grant consent to have someone from the agency come out.

"We were just trying to get someone's attention but they wouldn't do anything," Bosick said. "They said they would investigate but that never amounted to anything. My sister just kept getting worse and there was nothing we could do about it."

Finally, the ninth call came April 8, 2009, a month after Bosick took his sister to the hospital. He said an OIG investigator told him to call his sister's case in to the hotline so he could officially begin an investigation that would help with getting a court order to place Lane in a nursing home.

As a result of the OIG investigation, a judge appointed a guardian for Lane and approved a recommendation that she live her last days in a nursing home. She died two months later.

The OIG investigative report stated, "We substantiate the allegation of neglect." The report was dated May 26, 2009, about two weeks before she died and 26 months after the first hotline call.

The OIG received 11 calls about suspected abuse of Ruby Drew.

Drew, 49, who is mentally impaired from birth and a stroke victim, lived in a corner house on a quiet street in West Frankfort with her husband, Kenneth Drew.

On Jan. 2, 2008, an investigator from the OIG showed up at their home in response to a hotline call and asked questions. The concern was that Ruby was being neglected, an allegation the investigator quickly substantiated.

Nonetheless, she remained in the home throughout 2008 and 2009. During that time, five more calls came in to the hotline alleging that someone was neglecting and abusing Ruby. Two of these calls were labeled "refused consent," with no investigation. Two others ended with the complaint being "unsubstantiated." A fifth call was rejected as "ineligible," although a reason wasn't given on a computer printout of multiple hotline calls. None of the callers were identified.

In 2010, there were three more calls to the hotline regarding Ruby, who still lived at the same address on South Douglas Street with her husband. None of these calls led to an investigation. Two were listed as "non-reportable."

Last year, two more calls came to the hotline alleging physical abuse of Ruby. They were not investigated. One stated that Ruby refused consent; the other was listed as "non-reportable."

The OIG must first get "consent" to conduct an investigation. If the person is not capable of consent, a court order can be obtained, but many times a person "refuses consent" because their abuser is standing right there, advocates for the disabled say.

In all, the OIG hotline received 11 calls during the four years, but no one removed her from the home.

Despite the calls, Ruby was, if anything, worse off than ever, relatives said. They said her husband had been forcing her to perform oral sex, Ruby's brother, Elmer D. Reed, stated in an application for a court order of protection. Kenneth Drew denied the accusation.

Amy Lipham, Ruby's niece, said she made several of the calls to the hotline.

"It's all just a joke," she said, "When I called the hotline I expected them to do something, but they didn't. They never talked to me. They never did anything."

A taciturn man with deep convictions, Reed said he showed up at the house one day and said to his sister's husband: "Get out. The marriage is over."

Kenneth Drew said he left because he felt he had little choice. During an interview in a West Frankfort barber shop's parking lot near his rented room, Drew said he never harmed Ruby and, like her, was disabled. He said he is a diabetic and lives on $505 per month disability.

Reed received the order of protection and later successfully petitioned a judge to place his sister in a nursing home.

"Ken Drew forces himself upon Ruby Drew, even tho (sic) she says, 'No, no, no,'" Reed wrote in the court application for the protection order. Reed said he personally observed Kenneth Drew physically and verbally abusing his sister.

Standing in the doorway of his rural Franklin County trailer, Reed said the police and OIG did nothing, despite his repeated calls for help.

"What law is there but rich man's law?" he said. "You can't get justice if you are a poor man."

'No evidence of neglect'

In a majority of the death cases, emergency responders and health-care providers knew that a disabled person was likely in trouble, according to OIG hotline summaries. Some tried to help; few thought of calling the OIG until it was too late.

Chief Dave Dato, of the Wauconda Fire Department in Lake County, said his men responded dozens of times in two years to the ramshackle home of 46-year-old Gerald Gottschalk. He said they always found him ill and covered with feces. Plastic buckets of human waste were seen throughout the house. Firefighters reported the house should have been condemned. They believed Gottschalk was mentally impaired.

A log of emergency 911 calls supplied by Dato showed that when firefighters showed up at Gottschalk's residence, he would complain of ailments that included abdominal pain, swollen legs and being unable to stand. However, after medical treatment, he was always returned to the same house.

Finally, on Oct. 3, 2007, an ambulance took Gottschalk to a nearby emergency room, where he died in the hospital's intensive care unit eight days later.

The OIG knew of the conditions involving Gottschalk because Wauconda Fire Department Capt. John Spratt made a detailed hotline call on Oct. 4, according to a copy of the call summary.

"Caller stated he wanted someone to investigate on Mr. Gottschalk's behalf because he needs a lot of care and wasn't getting it," the OIG report stated.

An OIG investigator was assigned to visit Gottschalk at the Condell Medical Center in Libertyville, only to be told the patient was too ill to talk, according to a copy of the case action report.

No further activity occurred except for a phone call the hospital placed to the investigator on Oct. 19 telling him that Gottschalk had died eight days earlier. The investigator concluded his report by declaring that because he had died, Gottschalk was "no longer eligible" for services, so there would be no OIG investigation.

Despite written reports by the Wauconda firefighters who had been showing up at Gottschalk's home for two years describing his medical emergencies and wretched living conditions, the OIG investigator wrote: "He died of natural causes. There was no evidence of neglect."

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©2012 the Belleville News-Democrat (Belleville, Ill.)

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