‘A veil of guilt comes over you’: Covid-19 hard for people with intellectual disabilities and those who love them
Cynthia Girgenti lives only a few blocks from the Coventry group home where her brother, Kevin, has lived for the past year. She has been used to seeing him several times a day. She’d have breakfast with him and have him over for dinner most nights.
She would take him shopping, clean his room and participate in many group homes activities.
“I’m not the type to drop [him] and run,” she said. “The home is an extension of family.”
So it wasn’t easy for her when she got the news several weeks ago that because of COVID-19, she would not be able to visit him at the home, which is operated by the Hartford-based nonprofit Oak Hill. Nor would she be able to take her brother, who is 52 and severely autistic, on outings unless she wanted to take him home with her for the duration of the outbreak.
“A veil of guilt comes over you,” said Girgenti, who lives in neighboring Tolland. “If I don’t take him home and he gets ill, how am I going to feel about that?”
A veil of guilt comes over you. If I don’t take him home and he gets ill, how am I going to feel about that?”
But Girgenti concluded that it would be in her brother’s best interest to have him stay at the group home. “There’s only one of me. If I get sick, what’s going to happen to him?”
It was a wrenching choice, and one that thousands of families have had to make in the last few weeks as operators of Connecticut’s more than 850 state and privately-operated group homes for people with intellectual disabilities grappled with how to best protect their residents and staff in the midst of a pandemic.
“So many of the parents of our participants have really great relationships (with residents) and are a natural support,” said Barry Simon, CEO and president of Oak Hill, which operates more than 60 group homes for intellectually disabled people in the state.
He said the reaction from families has run the gamut from parents who were “incredibly distraught and angry” while others were “appreciative and supportive” of the governor’s executive order, issued March 15, that banned visitors to group homes.
“As time passed by everybody is now much more understanding of what we did and why we did it,” Simon said. “But it came as a bit of a shock.”
For Fay and Rick Lenz, the situation is quite different. Their 39-year-old son, Danny, who is intellectually disabled with autistic tendencies, lives in an apartment where an agency known as FAVARH, The Arc of the Farmington Valley, provides daily services.
He is high functioning and has some understanding of what is happening now, his parents say. When given the chance to stay in his apartment or come home for the duration of the outbreak, he opted to stay in his apartment even though he can’t go to his job at a warehouse in Newington. He is now home by himself all day; his one roommate opted to go home to Guilford.
“I don’t think he understands the full scope of it, but he knows there is a virus and it’s bad and he can’t be near people,” his mother said.
Lately they have been delivering his favorite Dunkin Donuts coffee and the latest National Geographic – he likes the pictures. They meet Danny outside his apartment and maintain a 10-foot distance between them. They leave their little gifts on the doorstep and then back up, so Danny can get them.
“We can see him,” Faye Lenz said, her voice cracking for a moment. “It was emotional because we couldn’t hug him. But he loved that fact that we were there and we loved the fact that we were there.”
The families of group home residents and of residents in supported apartments aren’t the only ones stressed by the unprecedented state of affairs – residents, staff and managers are struggling too.
Simon said that like many group home operators, he and his staff have been scrambling to ensure day-to-day coverage at their homes now that some direct-care staff are getting sick or unable to report to work after exposure to COVID-19.
It can also be a challenge to keep staffers reporting to work in facilities where an employee or a resident has received a positive diagnosis, Simon said. Direct-care staff in group homes are not considered essential workers in the healthcare system – a classification that nursing home staff do have – that would give them priority when it comes to testing and to obtaining personal protective gear.
As of Monday, the number of residents with intellectual disabilities who have tested positive for COVID-19 reached 28 for those receiving residential services through the private, nonprofit provider network, which includes group homes, apartments and other options in the community. There are no residents who have tested positive in state-run group homes yet, but there are 17 in regional residential centers and six at Southbury Training School.
We are experiencing all of the shortages, it’s just that we are not a hospital, so we’re not getting the same attention. We are not going to have enough PPEs to cover if this plays out in a lot of places.”
Two residents who were at the Northwest Regional Center in Torrington have died, while one who received residential services through a private provider has died.
Twenty-three staff members in state-operated residential programs have tested positive, and the state did not have a number for positive tests among staff members in privately operated residential programs.
So far, Simon said, he has had five staff members, but no residents with confirmed COVID-19 diagnoses in the agency’s group homes for intellectually disabled people.
Getting deemed ‘essential’ to healthcare
If coronavirus does come to these facilities, it’s highly likely to spread. Many residents don’t understand anything about social distancing, said Shanna York, who works at a group home run by Oak Hill in East Hartland. “We tell them as much as we can, the ones that understand, ‘Please don’t touch your face, please don’t put your fingers in your mouth,’ but five minutes later they are back doing it.”
“There’s a lot of praise for the doctors and the nurses and the health care professionals, but where direct-care professionals are concerned, I don’t think we’re necessarily recognized as health care workers,” York said. “[But] I kind of feel like every day I go to work, I’m taking my health – maybe even my life – into my own hands, because you just don’t know.”
Advocates say one way to help group home staff stay more protected would be to deem them “essential to the healthcare system.” Currently, according to Gian-Carl Casa of The Connecticut Community Nonprofit Alliance, “nonprofit staff and clients are treated in the same manner as the general public with regard to testing for COVID-19.”
In letters to the governor and to Matthew Cartter, the state’s epidemiologist, Casa asked that these workers be put into the “essential” category that would give them the same priority for access to protective gear and testing as nursing home and hospital staff members.
“Without this designation,” Casa wrote in his letter to Cartter, “nonprofits with employees who have been exposed to others, including clients, who have tested positive or are exhibiting symptoms must quarantine significant numbers of staff for a sustained period of time as they trace close contacts.”
“This disruption is destabilizing an already fragile and understaffed human services system,” Casa wrote, noting that with more rapid testing, those with negative tests could return to work sooner.
Casa added in an email that he was hearing growing concern about the lack of personal protective equipment in group homes. Casa’s organization represents not only homes for intellectually disabled people, but also people with behavioral health needs, and for those exiting the criminal justice system.
“It’s a situation that endangers both the staff and the people served,” Casa said.
Attempts to get a comment from the governor’s office were unsuccessful. Cartter said in an email that the state epidemiologist “does not have the authority to make such a designation.”
Sometimes we are left out of these conversations. We can’t be left out.”
A spokeswoman for the Department of Developmental Services sent an email saying that the agency is working directly with the state public health department “to ensure that all group homes receive the necessary attention and guidance on pandemic management and guidelines for individuals and staff showing symptoms or confirmed illness.”
In addition, the spokeswoman said DDS is in discussion “with the administration on the priority rating for residential settings of individuals with intellectual disability.”
“We’re basically running 60 plus mini-nursing homes across the state,” Simon said, but without the priority for personal protective equipment. “We are experiencing all of the shortages, it’s just that we are not a hospital, so we’re not getting the same attention. We are not going to have enough PPEs to cover if this plays out in a lot of places.”
If group home staff are designated as essential health care workers, Simon said, it would ease staffing issues by speeding up testing for workers who are suspected of having COVID-19 or have been exposed to it.
Anne Ruwet, CEO of CCARC in New Britain, said she has never wanted to be in the same category as nursing homes because the group homes provide a smaller, more homelike atmosphere.
But on the issue of whether her group home staff should, like nursing home staff, be considered essential healthcare workers, Ruwet, too, said, “Absolutely we should be on their list. Sometimes we are left out of these conversations. We can’t be left out.”
She said the nonprofit’s 11 group homes have no confirmed cases of coronavirus now, but added, “We are planning every day for the unforeseen. Our residents are all high risk, so we are planning for every scenario.”
‘They are climbing the walls’
In addition to increasingly risky working conditions – York said that besides caring for and providing activities for residents, direct-care employees also have to sanitize the houses twice daily – group home operators have had to deploy staff to provide programming for residents normally provided at day programs, which are currently closed.
“Every day is putting together a Rubik’s cube of solutions,” said Simon. “You just don’t know what the twists will be in order to come up with today’s solution or the solution that’s going to get us through six o’clock tonight.”
CCARC, which runs both day and residential programs, has shifted day programs into the homes so that residents, who are now stuck in the home all day, can continue some their usual routine, Ruwet said.
At Oak Hill, York said the staff has been working hard to come up with fresh ideas to keep residents engaged.
“For lack of a better term, they are climbing the walls,” York said.
One night, York said, she found a plastic sled and gave residents rides around the house. Another time, staff had a dance party for the residents. And they try to adhere to programs that clients had been pursuing at community day programs, such as learning how to do laundry.
Simeon Yisrael, a direct care worker at a group home in New Britain operated by CCARC, said he works hard to leave any “worries at the door” so that residents at the home, who he described as fairly high functioning, do not become alarmed.
My brother is like my child. Now you’re saying I can’t see my child. It’s emotionally draining.”
“They have limited capacity, but they do understand: OK we can’t go outside right now because it’s a dangerous time right now,” said Yisrael. He said they miss visits from their family, but that staff are also a kind of family for residents.
“They see us on a daily basis and we play such a tremendous role in their lives,” he said, “even though we’re not an immediate family, we are still an extended family.”
Girgenti said that at her brother’s group home, the staff has been doing an excellent job providing special programs and activities now that residents can’t go to their day programs.
She has also tried to help, sending over a special dinner on Friday nights of pizza, cupcakes and ice cream. But she said it’s been difficult for both brother and sister.
“My brother is like my child,” said Girgenti. “Now you’re saying I can’t see my child. It’s emotionally draining.”
She said she manages to FaceTime with Kevin four or five times a day, singing songs with him and telling him jokes, but she can see he is puzzled. She and the staff have told him that she can’t visit because she has a bad cold, hoping to provide him with a reason for her absence that he might understand. But she’s not sure that he does.
“I can see my brother’s emotion in his face: I’m confused, why aren’t you here? ” she said. “Just because he has an intellectual disability doesn’t mean he doesn’t have emotion. My brother’s emotion is equivalent to ours.”
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