Staying safe comes at the price of limited family connection for those in Community Living

"I miss my family.... Hugging them."

63-year-old Mark Forster has been supported by Community Living Windsor, an agency which works with adults with intellectual disabilities, for more than a decade. He's been living in group homes for most of his life. 

During regular times, Forster, who has Prader Willi syndrome, likes to keep busy, watching sports, playing in a darts league and hanging out at Caesar's Casino with his dad.

But the pandemic has changed everything, making family visits the most difficult loss. 

When asked how long it had been since he'd hugged a member of his family, Mark said, "Oh... long time ago....It's really hard to see them right now. And I'm sad because I can't."

It's ultimately a difficult choice for the agency. Staff members know family contact is important for the well-being of those they support — but keeping them safe from the virus is just as vital and that has meant months without family visiting in the home.

Forster hasn't seen his mom since before the pandemic because she lives in a long-term care home, but he stays in touch with her and his dad through video chats and phone calls, but it's not the same. 

"It's quite challenging," said Mark's dad, Earl Forster. "You miss that personal contact."

The isolation has been "tough," Mark explained, though he counts on his housemates and support staff for company and friendship.

Melodie Cook, the agency's executive director acknowledges how tough a situation this is on everybody, but she stresses that ultimately the focus is on keeping staff and residents safe.

"Our goal is to get everyone to the other end of this, frankly — alive."

For some, family visits not possible at all

The agency is not allowing family visits inside its homes. During warmer months, staff were able to facilitate outdoor visits for some individuals, which included Mark and his dad.

However, some of the other folks the agency supports struggle to wear PPE or to maintain physical distancing, making even outdoor visits impossible for them. For those who struggled with that, staff would try to find alternative ways to facilitate family contact, like window visits.

But for some, even that hasn't been possible. 

"We've actually had families communicate this to us where they feel like if they visit the person, it's going to actually upset them more because they're not going to understand why they can't go in, why they can't sit right next to mom and dad and touch them and those sorts of things," explained Cook. 

"It's difficult for them to understand. And so as a result, it's just not safe for them to visit. And the families have felt that way as well."

Staff have been working to keep all individuals connected to families through phone calls and video chats whenever possible. 

"We tried to be very, very creative in terms of how people visit, because it is important, but it's also important that we're careful," Cook explained.

'Why am I not seeing my family?' 

'It's the family connection part that is really difficult," said Samson Ogundimu, manager of support for three homes, including Mark's. 

"It's not the same without that physical connection."

Ogundimu explained that many in the community, even with the pandemic and various measures in place, are still able to at least be at home with their family members, but that's not the case for many of the people the agency supports. 

"There are few that understand what's going on and they're okay with that. For example, Mark completely understands that — you know, it's sick outside, there's a lot of people unfortunately passing away from it," he said.

"Other people that we support that, they don't speak. Of course, they don't have to speak for us to know what they're saying because we know them really well. You can tell by their body language, their non-verbal cues.

"What we have seen some people escalate it more than usual, you know, because they're trying to communicate that — 'Why am I not seeing my family?'"

Cook explained that visitation exceptions are made in the rarest of situations, like if an individual is experiencing serious emotional challenges.

"So if the person gets to a point where not visiting with their family is so emotionally wrenching for them … that they begin to do things that are harmful to themselves or harmful to someone else, and we can't get through that, then we consider them an essential visitor and we make plans around that. And actually, until fairly recently, that had not happened."

Ogundimu said he's also seen an escalation in some of the individuals they support, explaining that it really is taking a toll.

As for family members, Ogundimu added that they've been very understanding for the most part. 

"They know that we're trying to protect their loved one," he said. 

A number of outbreaks

So far, nine of the agency's 42 homes have experienced outbreaks. Since the start of the pandemic, 24 staff and 15 people they support got the virus. Just one outbreak remains active. Aside from that home, all other staff and residents who became sick have since recovered, Cook explained.

Earl Forster is grateful for the protection he said the home provides for his son — as well as the activities they offer to keep Mark engaged. 

"The challenges is for them to find something to keep busy, but they are very well looked-after in that situation where they go on zoom, Skype, they play bingo, almost every day, they have something going two or three times a day. So it's a very good program"

In addition to daily activities, staff also facilitate virtual meets ups for people they support who are friends but aren't able to see one another physically. 

For Mark, those activities are pivotal, because he's such an outgoing person.

"Mark stays busy. He's a very intelligent young man," Mark's dad explained. 

In the meantime, Mark is staying optimistic, hopeful for a time after the pandemic has passed, so that he can spend time with his dad, and get back to the casino. 

"It will be great to see Mark and give him a hug again in person," Earl said.