Cindy Ramage’s 22-year-old son, Cameron, who lives with cerebral palsy, would typically be at his day program during the week. It’s where he gets to ride his specialized bike, take swimming lessons and participate in art therapy.
But like the majority of day programs, child-care facilities and schools in Canada right now, Cameron’s program has shut down because of COVID-19.
For the six million people who live with a disability in Canada, measures surrounding COVID-19 have posed unique challenges, from increasing isolation to families not being able to get respite support to broader fears around contracting the disease.
“I’m trying to explain the best I can about the virus,” said Cindy Ramage. “But does [Cameron] understand completely? There’s no way of knowing.”
Cameron, who is non-verbal, communicates using yes and no buttons on his specialized chair.
His mother said she’s noticed a change in his mood, and asked him recently if he was missing his program. He pressed the yes button.
“He started to cry,” said Ramage. “It was heart-wrenching to see him do that.”
‘Things will change’
Because one of Cameron’s two support workers is no longer able to provide respite care because of the restrictions around COVID-19, his mother and family have to fill in the gaps, including feeding, toileting as well as activities like reading or stretching throughout the day.
Cameron also has a compromised immune system, which means there’s heightened concern about the risk of him getting sick.
“All I can let him know is … things will change. Things will get better,” Ramage said. “Keeping Cameron happy is the primary concern.”
WATCH | Cindy Ramage talks about how COVID-19-related program closures affect her son Cameron
While the federal government has been rolling out financial support for Canadians, they haven’t addressed the specific challenges encountered by people with disabilities and their families and caregivers.
“We really need to hear some statements about people with disabilities and their families, coming directly from the prime minister,” said Krista Carr, executive vice-president of the Canadian Association for Community Living.
The CACL, a national organization that supports people with intellectual or developmental disabilities, has been speaking with Ottawa about some of the specific challenges these individuals and families are facing.
“Families have either lost [support] workers or they’re not feeling safe or comfortable with those workers coming in because it’s a risk,” said Carr.
‘There’s more that can be done’
Carr added that in some cases, support workers going into homes don’t have access to personal protective equipment, while some families have pulled their loved ones from care facilities and are now caring for them at home because of a fear of infection.
The CACL released its own recommendations to the federal government, including measures like a top-up to the Canadian Emergency Response Benefit (CERB) for people raising a child or taking care of an adult with a disability.
Another recommendation is waiving the $5,000 earning requirement for people with disabilities who don’t meet the minimum-income requirement.
“There’s more that can be done,” said Carr.
Provincial governments have offered some benefits and eased rules on how families can use funding they already receive to take care of someone with a disability.
This week, British Columbia announced a new $225 monthly benefit until June for families taking care of a child with a disability. The province also temporarily raised its monthly disability assistance by $300.
Ontario has offered a one-time payment of $250 for parents with a child up to the age of 21 who has a disability so they can purchase tools for at-home learning. Meanwhile, families in Nova Scotia caring for a child with a disability are eligible for up to an additional $400 per week to pay for respite support.
But there are also challenges that money can’t fix.
For Tyson Sylvester, who is blind and has cerebral palsy, COVID-19 has meant further isolation. The Winnipeg care home facility where he lives has stopped allowing outside visitors. It’s a necessary measure, said Sylvester, but with some obvious drawbacks — for example, his mother can no longer visit him.
“She’s my greatest supporter, so it’s very hard not to see her,” said Sylvester over FaceTime.
He has kept in contact with her through phone calls and messaging apps, but it has been a difficult change.
The other issue is no longer being able to get outside or attend events or activities in the community.
“I’m very much an extrovert. I need the interaction,” he said.
Sylvester’s calendar for April previously had dates for bocce ball and art programs. Now, like most Canadians, he’s stuck indoors.
It’s part of the reason why Sylvester, as well as Cindy and Cameron Ramage, joined other members of the Manitoba Cerebral Palsy Association to create a special video message of encouragement to Canadians struggling with the isolation that COVID-19 has caused.
Self-Isolation is new for some.However this is not the case for me. Check out this great awareness video/project, that I’m very proud to be a part of! Share this message, if you want to help be part of the solution.<a href=”https://t.co/wiwhck0QIy”>https://t.co/wiwhck0QIy</a>
Isolation is something that the Active Souls Project in Kitchener, Ont., has been trying to help alleviate during the pandemic.
The facility is the largest adaptive training facility in Ontario, offering rehabilitation, recreation and fitness programs for 250 members, many of whom have physical or intellectual disabilities. It was forced to close its doors last month when mandatory provincial closures were introduced.
Owner, founder and coach Sascha King has been working around the clock to keep her members moving and connected.
“They’re so used to seeing us every day or every week, their routines are so set in stone that their worlds are upside down right now,” she said.
King has offered up gym equipment from the facility at no charge so members can still exercise at home. They’ve been doing non-contact drop-offs of exercise mats, skipping ropes and kettlebells, and have also moved training classes online, instructing their members from their basement at home.
“We’ve had to constantly reassure our kids and our adults with exceptional needs and adaptive needs that we haven’t left them,” said King.
‘I feel happier’
King knows first-hand how challenging it is to care for a loved one with a disability during COVID-19. Her daughter has Smith-Magenis Syndrome, a rare developmental disorder. Her daughter has been joining in the virtual workouts, and King said the socialization has helped her feel less isolated.
Active Souls Project also started a virtual buddy program to provide online respite support to family and caregivers who need a break. It’s not a perfect solution, since their program specializes in in-person support, but it’s been the only way to keep the program running.
Twelve-year-old Louise Kraemer, who has autism, used to attend classes twice a week. In light of the COVID-19 shutdown, she received an exercise ball and has been logging on at home to join the group classes.
“After I do the exercise, throughout the whole day I feel a lot better. I feel happier,” she said.
Her mother, Kathy Mortimer, said the online classes offer her daughter much-needed interaction and socialization that she’s missing out on. “It’s just been amazing that [the Active Souls facility has] been able to connect with everyone.”
While her gym is closed and little revenue is coming in, King is trying to keep the program going for as long as she can.
“One thing that the parents keep saying to us and our caregivers is just, ‘Thank you. Thank you for not giving up. Thank you for not stopping.'”