GRANITE CITY — At more than 400 pounds and unable to walk, Allen McGiffin lay in a fouled bed, covered in his own waste, waiting for the knock at his apartment door that meant help had finally arrived.
In his case, help was a daily bottle of cheap wine. His part-time caregiver, whose hourly wage was paid by the state, became his errand runner. McGiffin, now 43, said this was the only way he had to get the alcohol he needed to sufficiently numb himself to get through another day.
In failing health and refusing to seek help or allow himself to be helped -- except for the wine -- McGiffin in 2008 fell into a bureaucratic limbo. He was ignored by the state agency whose responsibility is to help homebound disabled adults like himself -- the Office of the Inspector General for the Department of Human Services.
Despite three complaints to the statewide hotline operated by OIG by persons concerned that he might die, McGiffin was ignored by the agency because his case was determined to involve "self-neglect" and self neglect was deemed "non-reportable." That meant he was on his own.
But no more.
According to an ongoing review of the agency's investigative procedures ordered by Gov. Pat Quinn in July that followed an investigative series in the News-Democrat, disabled adults who self neglect will now be helped. A revised employee directive for the Abuse of Disabled Adults Program, issued Sept. 13, states for the first time, "Reports of self-neglect are reportable," as long as the person meets the criteria that they are between age of 18 and 59, are disabled and live at home.
"The revised directive clarifies that self-neglect is reportable to the DHS OIG under the ADAP program, as this matter was unclear in previous directives," agency spokeswoman Januari Smith Trader said. "This change, which is the result of the top to bottom review ordered by Governor Quinn, is in line with the governor's executive order to strengthen protections of adults with disabilities and to ensure they have access to the services offered by the Department of Human Services."
Quinn's order, issued in July, was prompted by the BND series "Hidden suffering, Hidden death," which reported the OIG failed to investigate the deaths of 53 disabled adults who died following complaints to the hotline that they were neglected or abused. The deaths occurred soon after they were hospitalized on an emergency basis. The reason given by OIG for not investigating was that the dead are "ineligible for services."
That practice was stopped by Quinn, who ordered all 53 deaths going back to 2003 to be fully investigated, and turned over to police if the facts warrant.
The more recent change addresses the disabled who fail to take care of their basic needs called self-neglect, said Dr. Carmel Dyer, a geriatrician at the University of Texas Health Science Center at Houston. They may fail to take medication, or clean, eat properly or even care for their personal hygiene. It happens most when the disabled person has dementia, depression or, like McGiffin, suffers from substance abuse.
"Intervention must occur is when a person chooses to stay in a place where a reasonable person would not stay," Dyer said. "It's the difference between having a cluttered house and living in squalor with feces."
Four years ago, and over his own protests, McGiffin was moved to a nursing home at the order of Steve Willaredt, the city building inspector, who stepped in when the OIG refused to act, except to notify the police department of the situation. Granite City police went to the apartment, but no arrests were made.
"Allen, you can't live here any more," Willaredt told McGiffin after condemning the apartment as unfit for human habitation. McGiffin was taken to a hospital that day and then to a nursing home in Granite City where he lost more than 100 pounds and stopped drinking.
An OIG investigator who came to the apartment, and observed that McGiffin was lying in a bed and was covered with his own feces, wrote in his report that the case, 1508-N-0249 with the "N" standing for "nonreportable" did not "rise to the level of neglect as defined by OIG Rule 51, and is therefore non-reportable." Rule 51 is a broad administrative directive in use since the Abuse of Adults with Disabilities statute took effect in 2001.
"Mr. McGiffin can seek outside assistance on his own but chooses not to," the report stated.
McGiffin was deemed competent by intake staff, who never interviewed him or screened him for alcoholism or depression-- something Dr. Dyer said should occur in cases where self-neglect is suspected.
For fiscal 2011, the most recent year that data is available, 534 calls out of 1,289 calls to the hotline were deemed unreportable. Besides self-neglect cases, other non-reportable calls, which means they were not accepted, included 405 where a hotline operator determined that other agencies, including a police department were already handling the matter.
But police departments are not equipped to handle disabled adult cases except to investigate if there is criminal wrongdoing.
Smith Trader, the spokeswoman for the Department of Human Services, has said the agency does not follow up on these referred calls to confirm that the disabled adult was actually helped.
Wrapped in a blanket in bed and watching television, McGiffin recently told reporters for the Belleville News-Democrat that his life, while not ideal, was far better than disastrous living conditions at his former apartment.
"I'm doing better," he said.
Living alone and with almost no family except an aunt, he said that for nearly all of his adult life he had been afflicted with a drinking problem and problems with his legs. He said he was often forced to pick up aluminum cans and sell them for scrap to make a living. He said he also received a federal disability check.
He admitted that he had turned away help and wanted to be left alone, although now he said he sees that he needed to be taken out of the fouled apartment and to be given medical care.
State Rep. Greg Harris, D-Chicago, the head of the House Human Services Committee, which held a session in July on the BND's findings, said, "This is a very positive development ... but we've got to stay really vigilant. We've got to address them all and make sure past wrongs are corrected as well."