Suzan Mubarak keeps an eye on her cell phone every Sunday afternoon. Then her boyfriend will call to let her know that he is out of her home for her weekly wave.
Mubarak, 31, and Mitch Domier, 43, live a few miles apart in Bozeman, Mont., But these drive-by visits are the closest the couple has experienced in nearly 10 months. The pandemic largely caged the homes for adults with developmental disabilities they live in, limiting them to video chatting and occasional drive-by.
During these Sunday visits, Mubarak’s eyes show that she’s grinning behind her mask. Domier usually leans out of the passenger window of the group’s delivery van. Domier’s roommates, who like to ride, wave in the background. When it’s not too cold, Mubarak makes his way to the invisible barrier that has to separate them by 6 feet. They don’t talk for long – this is saved for their nightly video chats, the only place they face each other without a mask.
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The couple met at the work center of their group houses, a center that provides vocational training and contract work for businesses in the city. Mubarak liked that Domier was teasing someone in the room and she thought he was cute. Domier tries to keep his face straight when joking – which is often the case – but he has a booming laugh. And Domier noticed Mubarak immediately, even though she was shy.
“She’s nice,” Domier said, adding that they are on the same side as regards the Montana state soccer team. “She likes the bobcats, I like the bobcats.”
They’ve been going back and forth for years and – although both of them lost track of exactly how long it was – they think they’ve been stable for the past two years. Now they’re learning how to be in a long distance relationship with no end date even though they’re only a few miles away.
“It’s hard sometimes,” said Mubarak. “I miss him.”
Mubarak and Domier are among the 40 or so people who live in homes owned by Reach Inc., a Bozeman nonprofit that serves adults with a range of developmental disorders, including autism and chromosomal abnormalities such as Down syndrome. The nonprofit, staffed 24/7, connects residents with jobs and friends in the city to help them live as independently as possible. But these houses have been largely closed since March.
No weekend trips to see parents or hang out at the senior center. Visits are limited to a room divided by plexiglass or, if desired, video chats. Long-term jobs in restaurants, hotels and shops have been replaced by contract work done at home, such as cleaning test tubes. The only people allowed in the houses are employees, and even they must keep their distance.
Many residents have settled into their new routines. But Dee Metrick, Reach’s chief executive officer, said some don’t understand why their worlds have shrunk. Some are still frustrated when they can’t give high fives to the aides spinning their homes. The isolation has increased the long-standing fear of some residents. A Reach customer who is particularly afraid of the virus will get angry every time someone walks by their house without a mask.
“Everything just came to a standstill,” said Metrick. “You have a lot more support right now than some people in the world, but our customers can feel a little invisible and lost. Sometimes it is more difficult for the customers’ family members. There are parents who haven’t seen their child since March and who just want to hug them and know that they are fine. “
At least 300,000 people with intellectual or developmental disabilities live in group homes in the United States and are likely to experience similar changes. The institutions have good reason to be careful. People with developmental disabilities are more likely to have illnesses that make COVID-19 infections more risky. Early research showed that people with intellectual and developmental disabilities were three times more likely to die from contracting the virus than people without such disabilities. Some cannot avoid coming into close contact with aides. And group accommodations can provoke fast-paced outbreaks.
“I hope we can beat the odds,” said Metrick. “We have a house where most of them will probably end up in the hospital if the people in that house get sick.”
As of December 29, 160 of at least 870 Montana adults living in facilities for the disabled had been diagnosed with COVID-19 and five had died.
Domier understands why his world has changed. He follows Montana’s COVID-19 numbers by watching the news.
“Cases keep going up and down and up,” said Domier. “If people wear their masks, it would be fine.”
For Domier, the adjustment was relatively easy. He likes routine and created one that works for now.
Domier cleaned and organized shelves at Goodwill and worked a few days a week in the center where he met Mubarak. Now he’s working on his kitchen counter, packing screws and washers as needed for self-assembled furniture. He and his roommates sometimes throw liquid out of test tubes, but he said it wasn’t his favorite job because the tubes stink. Still, he likes being able to work from home, where it’s quiet and he takes turns choosing radio stations.
“I’m busy making money all the time,” said Domier.
With extra time at home, Domier runs on a treadmill most days after work. He puts on his headphones and shoots Garth Brooks. He is only a few pounds away from the 200 pound goal his doctor set for him.
Before the pandemic, his mother usually visited once a month to shop and have dinner. Now Domier calls her every Sunday evening to talk about the past week, a conversation that lasts for hours.
Car trips are now his main freedom from home. Domier and his roommates have their driving circle at the Montana State University soccer stadium. It’s one of the first years in many that he hasn’t attended a game. Fast food drive-thrus are another favorite. If Domier makes his choice, they’ll go to McDonald’s where he’ll get a Dr. Pepper and an apple pie ordered.
“Sometimes we go to the airport and drive around,” said Domier. “See planes come in, land, and take off.”
And of course they drive past Mubarak’s house on Sundays. Unless these visits are due to quarantines or bad weather, Domier doesn’t mind just video chatting instead.
But they miss the days when Domier would visit Mubarak and sit on their porch to talk and their overlapping shifts at work. They miss cheering each other on when they competed on the track and swimming in the Special Olympics. Mubarak’s favorite part of her days is still her job. Like Domier, she often sorts parts. She wants to return to her cleaning rooms in a hotel in downtown Bozeman. It was a place to meet new people. She misses her friends.
This summer she spent a lot of time drawing pictures of her friends in chalk on the sidewalk and tending to her patio flowers. Winter means finding other ways to relax. When it’s a tough day, she speaks to Jenna Barlindhaug, an assistant who works in her home.
“She teases me every day about my boyfriend,” Mubarak said with a smile on a video call while Barlindhaug sat some distance away, both in masks.
Barlindhaug laughed and said that they take turns teasing each other. “There are some tough days when people are in tears,” said Barlindhaug. “We really have to think about how we can cheer each other up.”
When the nonprofit’s annual December banquet went online, Mubarak missed Domier as their date. But she and her roommates were still wearing the clothes they had chosen months ago, and Barlindhaug did everyone’s hair. They had burgers and cheesecakes delivered and watched a photo slideshow of the lives of Reach residents last year.
Domier and Mubarak know they’ll likely get two shots in the arms to protect them from COVID-19 before life can return to anything normal – and they can attend the banquet together again.
Until then there is always Sunday.
Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation that is not affiliated with Kaiser Permanente.