Hey there, time traveller! This article was published 25/4/2020 (540 days ago), so information in it may no longer be current.
Plan for the worst.
That has been the COVID-19 strategy for Direct Action in Support of Community Homes Inc., a non-profit organization that cares for intellectually and developmentally disabled people.
DASCH operates 59 group homes around Winnipeg and employs more than 700 people who provide 24-7 support for its 162 group-home residents, who are as young as 10 and as old as 72.
Part of that planning was forming a coronavirus task force in the middle of February, about a month before the province announced the first of nearly 250 confirmed COVID-19 cases in Manitoba, says Karen Fonseth, DASCH’s chief executive officer. Its job: communicate with parents and family members of group-home residents as well as managers about the steps DASCH would take to prevent residents and staff from contracting the virus.
"We’re approaching it as if it will happen. If it doesn’t happen that would be a wonderful thing," Fonseth says. "We did get a jump on this, and it has made a difference in the homes."
Besides stressing proper hand-washing and use of hand-sanitizers for staff and residents — a mantra that has become familiar to most Manitobans — and following guidelines dictated by the provincial and federal governments, DASCH has also limited group-home visits to medical-related appointments.
Guidelines announced by the province ruled out family visits to group homes and, if one of the residents left to visit family, the resident wouldn’t be allowed back, Fonseth says.
"The challenge is to deliver the message to families that you can’t see your loved ones," she says. "We’re following the guidelines, but delivering that message is awful."
Awful yes, but far worse is what has happened at the Participation House group home in Markham, Ont., where 39 of the facility’s 42 residents, as well as 21 staff members, were diagnosed with the virus. Two residents, a 58-year-old man and a 53-year-old woman, have died, CTV News Toronto reported.
The Canadian Association for Community Living fears governments are ignoring people with intellectual disabilities during the pandemic crisis, threatening their health in the process.
"Every day across this land, politicians and health authorities attempt to reassure us," Robin Acton, the Lloydminster, Alta.-based president of the CACL and parent of an adult daughter with intellectual disabilities, says in an April 16 release. "With each passing day, my daughter and others with intellectual disabilities remain invisible and forgotten. My anxiety and fear mounts."
DASCH homes are much smaller than the Markham facility, with just three or four residents in each one. There have been no positive COVID-19 tests thus far; if that changes there are plans to turn two homes into quarantine residences.
“The challenge is to deliver the message to families that you can’t see your loved ones. We’re following the guidelines, but delivering that message is awful.” ‐Karen Fonseth, CEO of DASCH
Explaining the pandemic and the accompanying physical-distancing rules — the province has extended the state of emergency to May 17 — isn’t simple when communicating with group-home residents who have varying levels of education and cognitive ability, says Janet Forbes, executive director of Inclusion Winnipeg, a charity that has assisted those with intellectual disabilities and their families since 1958.
"While all of us are going through a challenging time, people with intellectual disabilities are at risk of experiencing the disruptions to their typical days in more profound ways," Forbes says. "People rely on routines because they then know what to expect."
The Lehr family is one whose routines have been disrupted. Karen, 44, has Down syndrome and lives with three other residents in a River Heights group home operated by DASCH. Her parents, John, 76, and Kay, 73, connect with their daughter on the phone and online.
"It’s not as bad as it might seem," John says. "It could be a damn sight worse. If it were 30 years ago, it would have been much tougher, only with the telephone. Now we can see her on FaceTime."
Easter weekend was particularly difficult for the Lehrs.
"There was a degree of angst when all this happened," John says. "We debated — we’d normally bring Karen over for Easter — but if she came, she’d have to stay, and then she’d miss her friends (at the group home).
"We felt terrible as parents, but we’re glad she enjoyed it where she is."
Before the pandemic, Karen worked five days a week at Shaftesbury Park Retirement Residence. But the southwest Winnipeg seniors’ residence has restricted staffing to essential workers to prevent spread of the virus, so she is unemployed for the time being.
John says she isn’t missing her salary — "Karen’s wants are pretty minimal" — but she’d rather be back at the retirement home.
"After Karen had been away for a week, she made inquiries about going back to work," he says. "Work is more than pay — it’s a sense of belonging."
The virus has also shut down DASCHWorks, a new vocational training program that was starting to show promise for many people who believed they couldn’t hold a job, Fonseth says.
Inclusion Winnipeg has had to suspend its Ready Willing and Able project, which seeks employers to hire people with intellectual disabilities, and also had to call off professional development training events, Forbes says.
Government restrictions on essential services also forced DASCH to suspend day programs for group-home residents, as well as regular recreation and entertainment outside the home.
"It’s difficult to explain why," Fonseth says. "The residents need a pattern of regular activities, at what day, at what hour."
Karen is able to understand and follows the measures but she misses the way life used to be, John says. She’s a Special Olympian — she practised and competed in rhythmic gymnastics prior to the shutdown — and went bowling with friends on Saturdays.
"She gets a bit bored, like all of us," John says.
“Families who still have an adult family member living with them are experiencing fatigue, as they no longer have the break during the day when their son or daughter was at a day program." ‐Janet Forbes, executive director of Inclusion Winnipeg
Boredom, however, is the least of the worries for families who care for someone with intellectual disabilities at home. Responsibility has gone way up after provincial guidelines forced cancellations of many activities, says Forbes.
"Families who still have an adult family member living with them are experiencing fatigue, as they no longer have the break during the day when their son or daughter was at a day program," she says. "I wish I could say we had a solution but for now, we are staying in contact with them and helping them access formal services that are available."
Staff members at group homes are finding creative ways to keep residents engaged during the all the extra hours instead of participating in pre-pandemic activities elsewhere, says Ethel Lopez, who manages a DASCH home in Charleswood.
"Every day we have different activities for them," says Lopez, 47, who has worked with DASCH for 15 years, the last eight in her present assignment. "We don’t repeat anything during the week. We look for other things to do so they don’t get bored."
One day it’s karaoke for the four women, who range in age from their 30s to 60s. Another time it’s painting and colouring. Dancing, baking, cooking classes, board games and movie nights are also on the activities agenda.
Explaining why family members can’t visit, and why residents can't visit family and return was a tough sell, at first. Forbes says the intellectually disabled need concrete answers to questions in order to understand what is going on.
"The ability to understand and express the anxiety that they may be feeling is sometimes limited," she says.
Lopez and the staff at the group home are following that rule, and using constant communication with the residents to build new routines in the home.
"At the beginning it was pretty bad. Some residents go home to see Mom every two weeks," she says. "Every day we get them involved by interacting, and everybody explaining to them what’s going on, and how important it is (that) we wash our hands."
Lopez asked DASCH for an iPad because residents who have mobility issues couldn’t access a computer in the home’s basement. The tablet has proven to be a big hit, as it allows residents to use FaceTime for virtual visits with families and friends instead of relying on the phone.
Staff members — 15 people work at the home to provide around-the-clock support — were at first worried about the virus, Lopez says, but fears were eased thanks to communication with DASCH’s head office.
Keeping fear and anxiety away from residents is almost as important as keeping the virus out because the residents will sense uneasiness, she says.
"I’m a positive person. My residents are going to see that. That’s the way I am," she says.
Lopez says the home has a supply of gloves, masks and gowns that staff use when helping residents who need assistance with basic needs, such as bathing. That doesn’t mean DASCH isn’t on the lookout for more.
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"The search is never-ending," says Fonseth. "We’ve been working for the past six weeks to order from anywhere we can find it.
"We have all our feelers out, and we buy whenever we can," she says, adding DASCH receives no funding from governments, but during the pandemic is receiving administrative help from the province to secure PPE. "Department of Family Services is working very closely with us and the communication has been excellent."
Families and staff aren’t taking Manitoba’s relatively low number of coronavirus patients lightly.
"There’s always a chance of infection, but (DASCH) is taking every reasonable precaution," John Lehr says. "No one can live in a bubble."
Alan Small Reporter
Alan Small has been a journalist at the Free Press for more than 22 years in a variety of roles, the latest being a reporter in the Arts and Life section.
● According to the 2012 Canadian Survey on Disability completed by Statistics Canada, 160,500 Canadians age 15 and older have a developmental disability that has been diagnosed by a physician, with the most prevalent conditions being autism, cerebral palsy and Down syndrome.
● Ninety-four per cent of people with developmental disabilities also have another disability.
● People without a disability are four times more likely to have finished high school compared to people with a developmental disability and are three times more likely to have graduated from a post-secondary institution.
● The employment rate of people with developmental disabilities is 24 per cent.
— 2012 Canadian Survey on Disability, Statistics Canada