But like the majority of day programs, daycares and schools in Canada at this time, Cameron’s program has closed due to COVID-19.
For the six million people living with disabilities in Canada, the measures surrounding COVID-19 have posed unique challenges, ranging from increasing isolation from families unable to obtain respite support to broader fears surrounding the disease. .
“I’m trying to explain the virus as best I can,” said Cindy Ramage. ” But [Cameron] understand completely? There is no way of knowing. ”
Cameron, who is not verbal, communicates using yes and no buttons on his specialty chair.
Her mother said she had noticed a mood change and recently asked her if she was missing her schedule. He pressed the yes button.
“He started crying,” said Ramage. “It was heartbreaking to see him do that. “
‘Things will change’
As one of Cameron’s two support workers is no longer able to provide respite care due to restrictions on COVID-19, her mother and family must fill gaps, including nutrition, bathing as well as activities like reading or stretching throughout the day. .
Cameron also has a weakened immune system, which means there is increased concern about the risk of getting sick.
“All I can tell him is … things will change. Things will get better, “said Ramage. “Keeping Cameron happy is the main concern. “
WATCH | Cindy Ramage explains how program closings related to COVID-19 affect her son Cameron
Although the federal government has provided financial support to Canadians, it has not addressed the specific challenges faced by people with disabilities and their families and caregivers.
“We really need to hear statements about people with disabilities and their families, directly from the Prime Minister,” said Krista Carr, executive vice-president of the Canadian Association for Community Living.
CACL, a national organization that supports people with developmental and intellectual disabilities, has discussed with Ottawa some of the unique challenges these people and families face.
“Families have either lost [support] workers or they don’t feel safe or comfortable with these workers coming in because it’s a risk, “said Carr.
“There is more to do”
Carr added that in some cases support workers entering homes do not have access to personal protective equipment, while some families have removed loved ones from care facilities and are now caring for them. home for fear of infection.
CACL has published its own recommendations to the federal government, including measures as a supplement to the Canadian Emergency Response Benefit (CERB) for people who are raising a child or caring for a disabled adult.
Another recommendation is to remove the $ 5,000 income requirement for people with disabilities who do not meet the minimum income requirement.
“There is more to do,” said Carr.
Provincial governments have offered some benefits and relaxed rules on how families can use the funding they already receive to care for a disabled person.
This week, British Columbia announced a new monthly benefit of $ 225 until June for families caring for a disabled child. The province has also temporarily increased its monthly assistance to people with disabilities by $ 300.
Ontario has offered a one-time payment of $ 250 to parents with a child up to the age of 21 who has a disability so they can buy learning tools at home. Meanwhile, families in Nova Scotia caring for a disabled child can receive up to $ 400 more per week to pay for respite support.
But there are also challenges that money cannot solve.
For Tyson Sylvester, who is blind and has cerebral palsy, COVID-19 has meant additional isolation. The Winnipeg health facility where he lives has stopped allowing outside visitors. It is a necessary step, said Sylvester, but with some obvious drawbacks – for example, his mother can no longer visit him.
“She’s my biggest supporter, so it’s very hard not to see her,” said Sylvester of FaceTime.
He stayed in touch with her through phone calls and messaging apps, but that was a difficult change.
The other problem is not being able to go out or attend events or activities in the community.
“I’m really an extrovert. I need interaction, “he said.
Sylvester’s calendar for April previously had dates for the petanque and art programs. Now, like most Canadians, he’s stuck inside.
This is part of the reason why Sylvester, along with Cindy and Cameron Ramage, joined other members of the Manitoba Cerebral Palsy Association to create a special video message of encouragement for Canadians living with the isolation caused by COVID. -19.
Self-isolation is new to some, but it is not to me. Discover this superb video / awareness project, of which I am very proud to be a part! Share this message if you want to help be part of the solution.https: //t.co/wiwhck0QIy
Isolation is something that the Active Souls project in Kitchener, Ontario, tried to help alleviate during the pandemic.
The facility is the largest adaptive training facility in Ontario, offering rehabilitation, recreation and fitness programs to 250 members, many of whom have physical or intellectual disabilities. It was forced to close its doors last month when mandatory provincial closings were introduced.
Owner, founder and coach Sascha King works tirelessly to keep her members moving and connected.
“They are so used to seeing us every day or every week, their routines are set in stone so much that their worlds are upside down right now,” she said.
King donated free gym equipment to the facility so members could still exercise at home. They have made contactless dropouts of exercise mats, jump ropes and kettlebells, and have also moved online training courses, educating their members from their basements at home.
“We have had to constantly reassure our children and adults with exceptional needs and accommodation needs that we have not left them,” said King.
“I feel happier”
King knows how difficult it is to care for a loved one with a disability during COVID-19. Her daughter suffers from Smith-Magenis Syndrome, a rare developmental disorder. Her daughter joined the virtual workouts and King said socialization has helped her feel less isolated.
Active Souls Project has also launched a virtual matchmaking program to provide online respite support to family and caregivers who need a break. This is not a perfect solution, as their program specializes in in-person support, but it is the only way to keep the program running.
Louise Kraemer, 12, autistic, attended classes twice a week. In light of the COVID-19 decision, she received an exercise ball and went home to join the group lessons.
“After exercising, throughout the day, I feel much better. I feel happier, ”she said.
Her mother, Kathy Mortimer, said online courses provide her daughter with the much needed interaction and socialization. “It’s just amazing that [the Active Souls facility has] was able to connect with everyone. “
With his gym closed and little income coming in, King tries to keep the program as long as he can.
“One thing the parents keep telling us and our caregivers is just,” Thank you. Please do not give up. Please do not stop. “”