One of the ways Mikaela Coppedge has coped during the COVID-19 pandemic has been through writing poetry. Her poem “The Fear That Is COVID-19," starts:
“Since the coronavirus outbreak and then the quarantine beginning, life as we know has all somewhat gone to hell.”
Coppedge has a rare brain disease called Rasmussen’s encephalitis. As a treatment, half her brain was removed when she was three years old.
“My surgery has left me paralyzed on my left side,” said Coppedge, 22. “I can't use my hand, and I can use my leg and my foot, but I can't wiggle my toes on my left side. And I wear a leg brace.”
Coppedge needs help with daily tasks, which she gets at Blackstone House, a group home in Bloomington, Indiana, for people with intellectual and developmental disabilities (IDD).
Across Indiana, more than 3,000 people with IDD live in 463 group homes. Unlike nursing homes or similar facilities, group homes are regular houses in residential neighborhoods. Each usually has fewer than 10 residents. Some people with IDD live in group homes their whole lives. Others use them as stepping stones before transitioning to living on their own.
“We have people that are good neighbors. They're taxpayers. They're doing all the things that anybody else in the community does to contribute to the betterment of the community,” said Leslie Green, CEO of Stone Belt, a nonprofit that supports people with IDD. “They're just part of the fabric of the community.”
Stone Belt operates 11 group homes, including Blackstone House. When it closed its building for day programs, Stone Belt also created a space with 12 beds to quarantine group home residents infected with COVID-19.
“Individuals that we support, they may have some other medical conditions that are going along with their disability. So that puts them in that high-risk category,” Green said. “We imagined really severe things that could happen.”
Those quarantine beds have stayed empty because none of Stone Belt’s group home residents have been sick. But that is not the case for the whole state.
As of July 8, 234 Indiana residents with IDD have contracted the virus, and there have been 14 deaths, according to Indiana’s Family and Social Services Administration. FSSA did not specify if those deaths were group home residents. There have also been 209 COVID-19 cases among staff who work with people with IDD, and four deaths.
That’s a small number of deaths compared to the state’s long-term care facilities – like nursing homes – which account for nearly half of Indiana’s total COVID-19 deaths.
At greater risk
Still, COVID-19 in group homes has been a national concern. New research shows people with IDD who live in group homes in New York were more likely to contract COVID-19 and die of the disease.
“They're about five times more likely to be diagnosed with COVID-19, which is outrageous,” said Scott Landes of Syracuse University’s Aging Studies Institute and one of the study's authors. “I think anybody living in a congregate setting right now, whether you've got a disability or not, your risk from COVID-19 is much greater.”
Dr. Margaret Turk, a professor at the State University of New York Upstate Medical University and another of the study’s authors, found in additional research that people with IDD who contracted COVID-19 had higher rates of pre-existing conditions like diabetes, obesity and heart disease, which can make the disease more dangerous.
“People with IDD and disability on the whole are an often neglected group when we look at many of these significant medical issues, and in this case, this emergent pandemic,” she said.
Residents, homes adapt
To limit exposure to the virus, Indiana group homes locked down in mid-March. New Hope of Indiana, which operates 11 group homes, moved regular activities for their residents – like Bible studies – online. Its residents, who typically eat together, began to eat at staggered meal times.
“We did have to be very conscious of social distancing in what is, in essence, a family home,” said Leah Steere, who directs the group home program at New Hope.
Social distancing can be hard for people with disabilities, Steere said. For example, many residents use wheelchairs with the assistance of a staffer. In two of New Hope’s homes, all the residents contracted COVID-19, though many were asymptomatic. Those residents all recovered, and New Hope of Indiana’s homes are now COVID-free.
“We worked real closely with [the] department of health and their strike team and implemented some advanced practices and stopped the spread very well,” Steere said.
There were some exceptions to the lockdowns. Mike Harmon has an intellectual disability and lives with seven other men at Eagle Glen, a group home in Columbia City, Indiana. It’s operated by Passages, another organization that supports people with IDD. The 40-year-old could leave the group home to go to his job at Pizza Hut, where he washes dishes and busses tables.
“I'm still kind of nervous about working out in the community and what have you, knowing that at Pizza Hut our dining room is open still to only 50% capacity,” Harmon said.
And the pandemic has resulted in some people with IDD losing work and volunteer opportunities. Rachel Nye has a mild intellectual disability and lives at a group home operated by Hillcroft Services. The 64-year-old used to volunteer at an animal shelter weekly.
“I see kittens and cats and dogs and puppies,” Nye said. “I just give them kisses and then rub their heads and play with them. Take them out for a walk."
Lately, she hasn’t been able to go to the shelter in person. LeAnne Cole, Hillcroft’s vice president of quality community living, said many group home residents also used to be active in Special Olympics. Those athletes have not been able to meet in person for months.
“One of our biggest losses is those kinds of community engagements,” Cole said.
Another challenge has been trying to keep the same staff working at the same sites to prevent carrying COVID-19 to other group homes.
Stuck inside, mostly
Sage Wright works at Blackstone House in Bloomington, where she's tried to keep residents engaged through arts and crafts projects.
“It has been a little bit of a challenge to be around each other all the time. I think that's true for anyone who's experiencing staying at home through all of this,” Wright said. “But we've definitely gotten closer, I think.”
In recent months, Blackstone’s six residents – who normally go to educational day programs, grocery shopping or exercise at the local YMCA – have been stuck inside. Residents like Coppedge only leave for trips to local parks and trails, places where it’s less likely they could be infected with COVID-19.
“It's just not the same,” she said.
But some restrictions have lifted. Blackstone residents had been limited to visits from family through windows or waving from the group home porch. But, late last month, Coppedge was able to leave Blackstone House to be with her family in person for the first time in three months.
“I want to be able to hug them,” she said.
This story was produced by Side Effects Public Media, a news collaborative covering public health. It is part of the Move to Include Initiative funded by the Corporation for Public Broadcasting. It focuses on people with disabilities and the issues they face.