CHATFIELD — Kevin Kallis was a 45-year-old construction worker and owner of a hobby farm when he lost his sight.
He had 20/20 vision until that moment.
"I knew something wasn't right," Kallis recalled about that time 15 years ago. "I started having a lot of pressure on my eyeballs."
On the third day after being admitted to Mayo Clinic, he woke up to discover he was completely blind.
The cause was lupus, doctors told him. It was the beginning of a long and wrenching transition for a middle-aged man who once had perfect vision.
For the past three months, the Chatfield resident has been living a life of indescribable boredom as he waits to be called back to work.
Like so many others, Kallis found his life narrowed to the confines of his apartment when Gov. Tim Walz issued his stay-at-home order to stem the spread of the coronavirus. But unlike many, he's still waiting for his portion of measured freedom.
Kallis works at ICR, a meat industry plant in Eyota, through a program offered by Ability Building Community disability services (ABC). Kallis likes the work because it gets him out of his apartment and talking to other people.
"I can't wait," he said. "Right now, I just do a lot of nothing."
While some semblance of normalcy has returned to people's lives with the lifting of state-ordered restrictions, large swathes of the disability community remain in limbo and in lockdown mode.
"We get calls every day from people wanting to know, 'When can we come back? When can we come back?' " said Sue Mackert, development director of PossAbilities of Southern Minnesota, a Rochester-based disability support organization. "We get calls from parents. Same thing. They're asking when they can come back."
Going without services
It's a difficult situation, because not all of PossAbilities’ participants understand why they can't come back.
PossAbilities offers a range of programs to help their clients live fuller lives. Some are work-based. Others are focused on providing opportunities for socialization, recreation and personal care, but without the work component.
Both PossAbilities and ABC closed in mid-March under direction from Walz and the state Department of Human Services. Within the past two weeks, DHS has gradually allowed disability programs to reopen, but only to serve a fraction of the people they once did.
Hundreds of Rochester-area people are still going without services. Of the 350 people who get services at PossAbilities, 280 are still waiting for operations to restart. Wayne Stenberg, ABC's executive director, says 664 of the 704 people it serves are waiting.
"Our primary focus is on ensuring everyone is safe as possible when returning to either a facility-based service or a community-based one," Stenberg said in an email. "Given the need to provide social distancing, it is not possible to bring everyone back at once, so it's a slow process."
The predicament is particularly thorny for those who live in group homes. Except in rare instances, they are not able to receive services at home, in day programs or at work. And it's not clear when they will be able to.
"Social distancing is a challenge," said Linda Driessen, executive director of Bear Creek Services, a group home for people with disabilities and brain injuries.
"I'm not saying everybody with a disability can't comprehend what social distancing is," she said. "But there are certainly plenty of individuals that we support who have no cognitive ability to understand why it is they can't give somebody a hug."
It's not just hugs, but holding hands and working intimately with others in a way that allows some residents to establish a connection.
So leaders like Driessen confront a life-and-death balancing act: How to restore a measure of freedom, like grocery shopping and other activities, while making sure residents don't return home and "spread COVID to their housemates."
The vulnerability of people with disabilities to COVID-19 is underscored by these grim statistics: As of early June, 28 people with disabilities have died of the disease in the state, and 379 have tested positive. Between staff and residents, 920 have tested positive, Driessen said.
While congregant settings such as nursing homes have gotten the lion's share of the COVID-19 media coverage, group homes and the challenges they face have dropped below the radar, advocates say.
"It's that delicate balance between the rights of people supported — again, the ‘forgotten faces’ — and keeping people from dying," Driessen said.
Paying a price
Group homes, as a result, find themselves squeezed at both ends — between residents who they now support 24 hours a day and a staff overwhelmed by such demands. The loss of a single worker can be problematic. Recently, a Bear Creek staff member called Driessen to say that his wife tested positive for COVID-19. But he couldn't get tested.
Driessen couldn't say whether residents were clamoring to return to work. But she could recall times when staff urged her not to allow a resident to go back to a day program, "because we are sure they can't socially distance."
"The feedback I did get was: Keep the doors closed. Don't let people out. And don't let people in. That was from staff," Driessen said.
Driessen said she is frustrated. People with disabilities might be able to enjoy more freedom than they currently do, even in the current pandemic, if everyone followed the rules. But wearing masks has become part of an ideological debate in the general public, and many people refuse to wear them.
So residents in group homes pay a price for that, too, by being cooped up and confined to their homes more than they should be.
"That's what's frustrating for me, is the idea that I have a right to not have to wear a mask, and the people who are vulnerable are the ones that have to stay home," she said. "I have no responsibility for their rights being infringed upon, because I'm more concerned about my own rights than anybody else."