On April 30, Michael Russell Jones, a resident at the Clark Manor nursing home in Chicago’s Rogers Park neighborhood, posted a video on his Facebook page.
“I’m begging you to hear me because we’re all in grave danger here,” Jones said in the video, filmed in the bathroom of the room he shared with another resident at the nursing home. “Coronavirus is in our facility.”
Jones, 40, pleaded to his friends to get the word out about Clark Manor. He said that he was aware of the number of COVID-19 cases and deaths the facility had reported to the Illinois Department of Public Health (IDPH). But unofficial tallies by him and his friends were higher, he said.
A few days later, in an interview with WBEZ, Jones said Clark Manor has not been transparent with residents about the COVID-19 deaths at the facility. The last official word he had heard was from his mother, who was contacted by the facility several weeks ago.
“My caseworker called and spoke to my mom, and she informed her that … there were cases in the building, but that I was safe,” Jones said.
Since then, Jones has been following news reports about the coronavirus outbreaks in nursing homes. He said he’s seen ambulances pull up to the building’s back door many times, but that he doesn’t have a clear picture of what’s going on at Clark Manor.
Jones is among several nursing home residents who complain that they’ve received little information about the outbreaks at the facilities they call home. The lack of information has had a chilling effect on some. Nearly half of the more than 4,000 COVID-19 deaths in Illinois are linked to nursing homes, according to a WBEZ analysis of the most recent state data for long-term care facilities.
Communication to residents too little, too late
Clark Manor administrator Robert Freitag sent a statement to WBEZ saying that the nursing home “has provided both written and verbal communications to residents, families, and staff regarding the current state of COVID-19 at the facility.” He said Clark Manor had also created a call-in hotline that provides “regular updates” on the outbreak.
However, Jones said these actions came too late — in early May, after many of the residents had already been infected and several had died.
WBEZ asked Freitag to provide specifics on when and how the nursing home provided written and verbal communications to residents about COVID-19 cases and deaths, but he did not respond by the time this story was posted.
Another resident at Clark Manor, who asked to remain anonymous for fear of poor treatment from staff, said the only other communication she received from the facility was the letter in early April, when the facility announced its first case of COVID-19.
Then, she said, the facility dropped off letters to each resident on May 8 announcing the hotline where people could call to get updates on the COVID-19 outbreak at the facility. The Centers for Medicaid and Medicare Services (CMS), which regulates nursing homes, updated its guidance on May 6 requiring nursing homes to report COVID-19 facility data to the Centers for Disease Control and Prevention (CDC) “and to residents, their representatives, and families of residents in facilities.”
As of Sunday, the recorded message on Clark Manor’s hotline provided the number of COVID-19 cases among residents and staff members at the nursing home as of May 15. However, those figures did not include the number of COVID-19 deaths. And the total number of cases reported in the recorded message was lower than the number of cases released by IDPH on the same day.
“By hiding things from us, they’re making us panic more because we don’t know what’s going on,” Jones said. “We’re just left to speculate, and for people like me that have anxiety disorder and good imaginations, I’m just like, what the hell is going on here?”
“We’re like sitting ducks”
Jones, who was being treated for depression and anxiety at the nursing home, also said his nerves were frayed as he watched fellow residents walk around without masks and sit “shoulder to shoulder” during smoke breaks.
“There was never any real effort to make everybody understand the importance of [social distancing] and what it means,” Jones said. He added that he is among the younger residents at the facility, and that many of the older patients are not as aware of the coronavirus crisis.
Less than a mile down the street from Clark Manor, 35-year-old Lyndsay Sullivan is experiencing similar circumstances at Lakefront Nursing and Rehabilitation Center, where she receives wound care for her leg.
She said she’s getting information about COVID-19 cases in her facility through the IDPH website, news reports, and conversations with people outside of the facility.
“If I didn’t have a computer, if I didn’t have a cell phone, I wouldn’t know any information,” Sullivan said.
The state’s nursing homes database shows an outbreak at Lakefront, but Sullivan said she and other residents have not been given much information. Sullivan said she has also asked for masks, but she was denied.
“We’re completely alone in this,” Sullivan said. “You know, we talk about “alone together. We are really alone together here. We’re like sitting ducks.”
WBEZ reached out to Eli Barnett, the administrator at Lakefront, for comment but did not receive a response by the time this story was posted.
Residents have a right to know what’s going on
Nursing homes should provide residents with “full and complete information” about the spread of COVID-19 in their buildings, said Steve Levin, an attorney who represents nursing home residents and their families.
“A nursing home is not a jail, and the residents are not prisoners,” Levin said. “This is their home. They have a right under the law to know what is going on in their care, what is happening around them.”
Levin said if a nursing home does not provide residents with complete information about a COVID-19 outbreak, then the facility is not providing “appropriate care,” which is a violation of the Illinois Nursing Home Care Act.
Levin also said nursing homes should supply masks to residents. “If it’s reasonable medical care to supply masks, if the CDC is expecting masks, if they’re having difficulty social distancing and they need to wear masks, then those masks should be supplied,” he said.
However, one expert said, before the COVID-19 crisis, nursing homes weren’t required to tell their residents about infectious diseases.
“Prior to [COVID-19], I don’t think there were guidance or requirements or laws that made it necessary for nursing homes to relay things to other residents in the building,” said Dr. Dheeraj Mahajan, a geriatrics section chief at Advocate Illinois Masonic Medical Center who works at nursing homes.
Mahajan said the nursing home industry is “very, very regulation-driven, so they tend to do things when they are absolutely required.”
“Proactively doing these things that sound like best practices doesn’t happen at all nursing homes,” he said. “Most of the things that get done are things that are absolutely necessary by regulation.”
Mahajan said IDPH has required nursing homes to notify residents of the COVID-19 situation for many weeks now. But guidance from CMS, the federal agency, came on May 6.
Still, Levin said telling residents what is happening around them is just common sense care. “For a nursing home to say that they didn’t know that was their job before [a regulatory agency] told them is shameful,” he said.
Activists call for nursing home evacuation
Francis Tobin, a coordinator for the Alliance for Community Services — a North Side coalition of people with disabilities, low-income families and front-line service workers — has been working with disability rights groups to call for an evacuation of nursing home residents.
Tobin compared the nursing home crisis to the outbreaks in prisons.
“Correctly, people are talking about how do we get people out of prison because they’re in a disastrously vulnerable place. Well, where’s the conversation about getting people out of these buildings?” Tobin said.
He added that, typically, if there is a problem in a nursing home, residents can call an ombudsman to look into the issue. But during this pandemic, those ombudsmen — who Tobin said are already limited in what they could do — are not allowed in the facilities.
“Right now, nobody can get into these buildings to actually see what’s really going on,” he said.
Levin, too, called for the state to take stronger action to help nursing home residents.
“In this climate, there’s no one other than the government, who can do what is necessary to make sure these residents are safe,” he said.
Levin said the state made a contingency plan for hospitals, setting up a $65 million facility at McCormick Place that went largely unused, and that nursing homes should get the same consideration.
Jones, from Clark Manor, said he could no longer wait for the state to keep him safe. Last Wednesday, he checked himself out of the facility with the OK from his doctor.
“I’m very sad to leave my people [at Clark Manor] behind, but I have no choice,” Jones wrote in an email.
He said a friend in Vermont is offering him a place to stay. He plans to make his way there, quarantine himself for two weeks, and move into his friend’s cabin.
Esther Yoon-Ji Kang is a reporter for WBEZ’s Race, Class and Communities desk. Follow her on Twitter @estheryjkang.