As many as 22 home care clients who are part of an Illinois program have tested positive for COVID-19, including five who died. Some home health aides also have tested positive.

As the nation scrambles to keep its doctors and nurses supplied with safety gear during the deadly novel coronavirus outbreak, an army of low-wage Illinois home care workers on the front lines remain largely on their own.

Workers such as 57-year-old Karen Williams, whose resourceful son tracked down a few masks for her to wear each day as she takes two buses from Englewood to Bronzeville to care for elderly clients for whom she prepares meals, dispenses medication and helps with bathing.

“What I’ve been doing is reusing them. Maybe every two or three days I change them,” said Williams, who never considered staying home.

“I am always there when she is sick,” she told the Better Government Association while she was visiting one client. “When she gets sick, I get sick, and vice versa…Because the client comes first, I am going to try to come as long as I can.”

Williams is among more than 40,000 workers in Illinois’ Community Care Program, which allows more than 100,000 seniors to stay out of nursing facilities by providing aides who visit the seniors in their homes.

The aides and clients are some of the most susceptible people to the pandemic, yet across Illinois many remain in close quarters, and lack protective equipment, such as masks and gloves.

As of Tuesday, the Illinois Department on Aging, which oversees the program, confirmed five deaths among 22 cases of Chicago-area seniors in the program who had tested positive for the virus, said the department’s spokesman Michael Dropka.

The private companies that employ the workers under a state contract are not required to report COVID-19 cases to the Department on Aging, Dropka said. The department knows some workers have tested positive, but cannot say how many.

Dropka, the labor union that represents these front-line caregivers, and the company executives who employ them said they are aware of the dangers inherent in allowing these two high-risk groups — elderly residents and caregivers — to mingle without proper protective gear.

He said the department has requested masks and other protective gear from state and federal emergency management officials. Company officials said they too are struggling to find enough gear to protect their workers.

Although home health-care aides are on the front lines of the coronavirus crisis in Illinois, they are not licensed or certified as health care workers. As the state gains access to gloves and masks, such workers do not qualify as “priority health care providers,” a category that is given priority access to protective equipment.

“The work that they are doing is extremely risky,” said Beth Menz, home care director for the Service Employees International Union (SEIU) Healthcare Illinois Indiana. “They are in the homes of seniors, bathing them, dressing them, preparing food for them. So there is fear in their minds that not only are they at risk, but could potentially put their families and their loved ones, who can also be in vulnerable categories, at risk.”

These workers have largely been left to fend for themselves during the crisis, according to interviews with the workers, seniors in the program and the union representing workers. In some cases, they’ve been provided no more than phone calls from employers asking them to check their temperature and reminding them to protect themselves by frequently washing their hands.

Reginald Griffin, 76, said he found five masks at his neighborhood hardware store on the city’s North Side.

“All I could buy as a customer,” he said. “So I have to be careful to keep them clean until I am able to get more.”

Griffin takes the bus each day to care for an 83-year-old man with diabetes, emphysema, and other chronic conditions that make it difficult for him to care for himself. He too never considered missing a day.

“I might think that way just like any other person in the front lines, but I have to do what I have to do,” Griffin said. “I have to think positively and do things so I won’t get it.”

Griffin was lucky enough to find protective gear on his own. Many don’t.

One 75-year-old woman told the BGA she is letting her home care worker dip into her personal stash of protective gloves.

“She’s my lifeline,” said Davetta Brooks, who suffers from several conditions, including an autoimmune disease, and relies on a wheelchair.

Nationwide, there are 12 million vulnerable Americans who rely on home-based services and are balancing social distancing with their need for help. Many of the seniors suffer from chronic health conditions, such as diabetes and hypertension, and low immune systems that experts have warned put them at an increased risk of developing a severe form of pneumonia if infected with COVID-19. The deadly virus has a higher fatality rate for those older than 60, and even higher for those older than 85.

Another national concern is the high rate of black Americans testing positive and dying from COVID-19, a trend Chicago Mayor Lori Lightfoot says is prevalent in the city where 72% of the virus-related fatalities are black.

In the Chicago area, the majority of seniors in the community care program are black, as well as the majority of caregivers, according to records and interviews. Nearly half of the caregivers are also older than 55.

Dropka, the spokesman for the aging department, said the state is working to secure additional supplies of personal protective equipment, including requesting supplies from FEMA.

He said the department also is in daily communication with provider agencies and has taken guidance from the Illinois Department of Public Health “regarding the screening tool and processes we use — so that both our in-home workers and the older adults they care for are safe when they do their work. The agencies in our network use this as part of any protocol where face-to-face contact with an older and more vulnerable adult occurs.”

“We are doing everything we can,” Dropka said.

Companies employing the workers also said they are scrambling to secure personal protective equipment due to the nationwide supply shortage and have asked the state for help. Some are providing gloves, which they’ve always offered to their workforce, but also are in need of masks and gowns.

A policy memo posted online by Addus HomeCare, one of the state’s largest providers of home care services, shows workers are being directed to use gloves, wash their hands regularly before and after direct contact with a client and encouraged to stay at home if they feel sick. If workers believe they may have been exposed, they are required to report to a supervisor.

If workers call in sick, they are asked five questions: Have they traveled internationally in the past 14 days; have they had signs of a respiratory infection such as fever, cough and/or sore throat; has anyone they live with had those symptoms; have they had contact with anyone who has been diagnosed or screened for COVID-19, and have they traveled to other states with widespread community transmission of the disease. Workers who fail the screening are instructed to cease patient visits.

But that’s just one protocol of more than 100 companies that provide home-based and community-based services to seniors.

Theresa Collins, president of the Illinois Association of Community Care Program Homecare Providers, said in an email that “each provider agency has developed their own plan of action based on the unique needs of their staff and participants.”

Providers, she added, are screening workers and the seniors they serve for coronavirus symptoms. If they fail the screening, they are asked to self-quarantine for 14 days.

Addus HomeCare, for example, asks clients the same five screening questions it asks employees when they call out sick. If the client fails the screening, the worker is required to notify their supervisor. If a client is quarantined or tests positive, the company would suspend services to the client and contact the state.

Darby Anderson, chief strategy officer at Addus HomeCare, said he is receptive to clients and workers who are worried and anxious for more protective equipment.

“The problem is simply the availability of PPE. We cannot secure enough,” Anderson said.

The company is pushing for its workers to be considered “priority health care providers,” in hopes that the designation would ensure their access to gloves, masks and gowns.

Anderson said that designation becomes even more necessary if home care workers are asked to care for seniors as hospital beds fill up. Already, he said, the question has come up in at least two states. But before that happens, he said, there needs to be a protocol in place to protect the workers. And that starts with protective equipment.

“We don’t want to say no, but we have to have the right PPE,” Anderson said. He said other issues to iron out would include whether $13-per-hour workers should receive hazard pay, and whether they should be provided hotel rooms to isolate themselves from their families during the outbreak.

Some seniors are already going without services, either because they’ve paused them amid the COVID-19 crisis or because they haven’t been able to secure an aide.

Carolyn Crane, 68, said she was in the process of getting a new aide when the pandemic hit and now has been without one for more than six weeks.

“It’s really bad right now for me, personally,” said Crane, who has diabetes, high blood pressure and a compromised immune system.

Crane said she was paying a neighbor to fetch her groceries and sometimes paying for food to be delivered, but the increased costs cut a hole in her budget. She finally got a respite when the Illinois Institute of Technology moved its classes online, freeing her grandson to help her out. He’s staying with her and helping her with groceries and daily tasks, though she’d prefer to have a professional help her instead.

Debra Miller, 68, said the issues for seniors go beyond whether home care aides have proper equipment. In Chicago, there are thousands of seniors living in apartment buildings where they might be exposed to the virus inside elevators, when they pick up their mail or when they throw out their trash.

At an online press conference last week, Miller and other seniors who are members of Jane Addams Senior Caucus, a grassroots organization that advocates for seniors living in low-income housing, called on city officials to enact new guidelines to protect seniors. Among them: Requiring better cleaning regimens in communal spaces, providing protective equipment to staff; and stationing trained healthcare professionals to monitor temperatures of workers and guests entering apartment buildings.

Miller said she’s frustrated by some elected officials who only talk about protecting seniors, the most vulnerable population.

“I know that by now,” she said. “Tell me what you are doing besides.”

This story was produced by the Better Government Association, a nonprofit news organization based in Chicago.