Group homes for disabled adults grapple with the spread of coronavirus

Working at a group home for adults with intellectual disabilities is often strenuous. But amid the coronavirus pandemic, Thomas said, each day feels like walking a tightrope - a thin one, with no safety net. 

When she steps into the three-bedroom condominium in suburban Maryland, to feed, bathe and care for the three disabled residents, she worries about what she may have carried inside. And after her eight-hour shift, when she returns to her apartment, she wonders whether she might have brought anything home to Keith, her 16-year-old son. 

"They are in their home. I am the one coming and going," she said of her clients one recent afternoon. "If something should happen . . . " her voice trailed off, and she began to cry. 

"I can't even imagine," Thomas continued. "If they get sick, I have to live with this for the rest of my life."

Thomas works for the Arc Montgomery County, which operates 36 group homes for developmentally disabled adults in a county of 1 million people. 

The residences have been in lockdown since mid-March, with no visitors allowed and only staff moving in and out. But in the past two weeks, six residents have tested positive for coronavirus, along with four caregivers. On April 11, one group home resident, a man in his 60s, died of covid-19.

For Arc and dozens of providers in the Washington region, the outbreak confirmed their worst fears about caring for some of society's most vulnerable members with stretched-thin resources. 

Thomas and other caregivers are paid just slightly more than minimum wage and frequently take shifts at multiple homes, increasing the risks of viral transmission. Their clients often have other underlying health conditions that make them more susceptible to the virus. 

Residents of group homes live in close quarters; some may not understand the importance of wearing masks or practicing social distancing, and many are not able to articulate whether they are experiencing covid-19 symptoms. 

In harder-hit states like New York, the virus has spread through dozens of group homes and infected hundreds of developmentally disabled adults, who are dying at higher rates than the general population. 

In the Washington region, providers who operate group homes have taken drastic steps to prevent outbreaks, with some wiping down surfaces and doorknobs every two hours. But the agencies say they are struggling with limited staff and equipment - a situation compounded by years of receiving less funding than requested from state and federal governments.

"We're trying our best, but we really can't do it alone," said Deborah Mark, a spokeswoman for Arc. "Every year, we've had to fight and beg for money." 

Even before the coronavirus crisis, Arc had 77 vacancies for "direct service professionals" like Thomas, whose pay has stayed relatively flat even as the state and county minimum wage grew. Starting pay in Montgomery is $13.15 an hour, just 15 cents above minimum wage. 

Since the outbreak, at least 25 employees have stopped working, either because they are afraid or are self-isolating after possible exposure, Mark said. Managers have started covering some shifts, dropping by group homes to cook and care for residents. 

Judy and Joe Pauley of Potomac, Maryland have spent years advocating for the state to allocate more funding to the Developmental Disabilities Administration, which helps to pay workers like Thomas. Earlier this week, they found out that their daughter Cecelia, who has Down syndrome and lives at one of Arc's group homes, tested positive for coronavirus. 

"[The caretakers] are my substitute. They are mom when I'm not there," said Judy, 83. "How can these be minimum wage jobs?"

Considered essential workers, caregivers have continued to work but have limited protection from the virus. Providers have struggled to obtain masks, gowns and hand sanitizer, often resorting to sharing supplies after delayed or canceled orders. 

At Arc's group homes, each of which house four to five people, most staff work only with cloth masks. The few who have higher-quality protective equipment have sometimes had to reuse it, Mark said. 

Montgomery's health department, which distributed two weeks' worth of protective equipment to all nursing homes, said there "are not immediate plans" to do the same at the county's 200 group homes. 

A spokesman for the department said the state has distributed protective equipment to its 2,400 group homes but did not respond to follow-up questions asking why multiple providers, including Arc, report a lack of masks, gowns and goggles. 

"We're kind of in last place," Mark said. Protective personal equipment "has to go hospitals, first responders, nursing homes . . . and further down the list are group homes."

Because caregivers often work multiple places, it can take just one outbreak for the virus to spread through a provider network. Daphne Pallozzi, chief executive for CHI Centers, which operates 17 group homes in Maryland, said caregivers may be "doubly exposing" or "doubly exposed." 

Patience Ekpo, 60, has stopped working at one of the several group homes where she is normally employed to lower the risk of cross-contamination. She picked up additional shifts at another home because an individual there - a middle-aged man named Jimmy - keeps trying to leave the house and needs someone to watch him closely.

"He's very sociable, very happy," Ekpo said one recent afternoon from the house, which is located in Silver Spring, Maryland. "He likes to go out and shake hands."

As she was speaking, Jimmy headed for the door. 

"Please, please," Ekpo said to him through her cloth mask. "I'll go out with you. Give me a minute, one minute."

Jimmy stalled, then sat down, brows furrowed. 

"Are you angry? Don't be angry," Ekpo said coaxingly. "Thank you, my dear."

Ekpo and others have taken on the parental role of dispelling the fears, anxieties and boredom that come with quarantine. Pallozzi, of CHI Centers, said she purchased indoor games and activities - from bingo and adult coloring books to a box set of documentaries - but knows that these are stopgap measures. 

"If we have to go through May, I don't know what we're going to do," she said. 

When Ekpo watches news reports on covid-19, she said, she feels her heart palpitate. She is frightened of being a carrier, but sees it as her duty to ensure that Jimmy stays safe. 

Thomas said it is hard for her to imagine what would happen if she wasn't able to care for her three residents. Who would know that one of them likes their cereal with strawberries, and another with bananas? Who would know when they liked to go for walks or when to hold their hands? 

As she spoke to a reporter by phone that afternoon during her shift, a television game show audible in the background, Thomas considered what would happen if one of the group home residents contracted the virus. 

"An ambulance would come, and then they would be by themselves," she said softly. "I wouldn't be able to go."

"Oh no," Thomas whispered to herself. "No, no, no."