AMES, Iowa — Missy Wierson didn’t get to do anything for her 48th birthday in December because she was sick with COVID-19.

“I had to stay in my room, basically bored in my room,” Wierson said.

Her roommate Amber Kirk also contracted the virus and was unable to see her family over the holidays, stuck with a “very bad cough and no appetite,” she said.

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Spending Christmas in quarantine was one of many setbacks Wierson and Kirk, who live in a group home through Mainstream Living in Ames, have had to face during nearly a year of canceled plans, social distancing and Zoom hangouts.

“That was really sad, but they handled it really well,” said Judy Schieffer, the women’s direct support professional at Mainstream Living, a program that serves people with intellectual disabilities and mental illnesses in Ames and Des Moines.

Both women were excited when they received their first dose of the Pfizer COVID-19 vaccine.

“I’m so happy I got it,” Wierson said.

Caring for a high-risk population

Around 700,000 Americans with intellectual or developmental disabilities live in a supervised residential setting, commonly called a group home. Like those in nursing homes and long-term care facilities, people living in group homes are at high risk for COVID-19 due to underlying medical conditions, communal living and close contact with caregivers. But the federal government is not counting outbreaks in group homes for people with intellectual and developmental disabilities, who studies say are two to three times more likely to die from COVID-19 than those without such disabilities.

Preparing to protect a vulnerable population, Mainstream Living’s pandemic emergency group implemented safety measures in last March. Day habilitation programming at The Center building was canceled. Visits were restricted at all houses and offices. Families were encouraged to take their children home for a few weeks if they had the means to do so.

“We knew that having five members and then usually two to four staff, depending on the location and the time of day, all in one living situation, was going to make for a pretty high-risk environment,” Mainstream Living communications director Amber Corrieri said.

Approximately 40 residents have tested positive for COVID-19 since last March, according to Corrieri. Seven residents had to be hospitalized. One resident, a woman living in a Des Moines group home, died from the virus.

“This was incredibly difficult, especially for the staff and other members at that particular site,” Corrieri said.

As the pandemic has stretched on, greater knowledge of how COVID-19 spreads has helped stem outbreaks, Corrieri said, so that one positive test does not necessarily result in illness for the entire household. Masks are worn by all who are able to. Staff wear face shields when they help residents brush their teeth or use the restroom.

The leadership team has since lifted some restrictions. Residents are able to visit family and vice versa, although gathering sizes are limited. When it was warmer outside, residents took socially distanced trips to local parks, rose gardens and apple orchards.

Corrieri said that while taking precautions, the leadership team is focused on “making sure that the rights of our members and those that we serve remain a priority.”

“We believe strongly in the value of making sure that people with disabilities are integrated fully into their community — working, living, playing, just like the rest of us,” she said.

Adjusting to a ‘new normal’

Some group home residents have been spending a lot more time inside than they are used to and miss hanging out with their friends at other houses and competing in the Special Olympics. In some cases, they miss their jobs.

Wierson and Kirk used to work at DanFoss through Mainstream Living’s employment assistance program, which has been paused to lessen residents’ virus exposure.

“I felt really sad because I didn’t get to see my friends,” Wierson said of having to stop working.

Before the pandemic, direct support professional Rachel Stone worked in the day habilitation program and was “always very active,” she said. Stone understands when residents feel bored or under-stimulated because she sometimes feels the same way.

“When I was having those feelings, it was hard for me almost to step aside and put on my DSP shoes,” Stone said. “It’s like a whole new part of our role … emotional support has always been a piece of what we do, but it just seems like it’s so much more now.”

Over time, staff and residents “have slowly adjusted to this new normal,” Stone said. There have been lots of puzzles, crafts, baking and board games. A weekly “Quarantine and Chill” over Zoom keeps residents connected.

“We talk and say hi to our other friends and stuff at different sites,” Kirk said.

With the day habilitation program canceled, the staff is more isolated in the houses they support, Stone said. But they often reach out to one another on Facebook, “holding each other up and praising each other for good ideas … because everybody needs a little more positivity right now.”

Even with the added stress of COVID-19, Schieffer, who works with Wierson and Kirk, “can’t imagine doing anything else.”

“I feel like I’m doing my heart’s work,” Schieffer said.

A few weeks ago, the three built a snowman together. But instead of a carrot for a nose, they decorated his face with a surgical mask.

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