It’s been a stressful year-and-a-half for participants in Empower Simcoe’s day program, and the frustration continues to mount.
The agency, which provides support to people with intellectual disabilities, as well as their families, used to offer programming inside its Orillia facility at 4 King St., in addition to outings in the community.
That changed when the COVID-19 pandemic hit in early 2020, prompting Empower Simcoe to shift to outdoor activities with a focus on those living with their families. A “small number” of families chose to participate at that time, the agency noted in a statement.
Those activities ceased amid the second wave, though virtual programming including bingo, karaoke and trivia continued.
In late spring/early summer of this year, the community-based outdoor programming returned — again, aimed at assisting people living at home with family.
For some, it is insufficient.
Prior to the pandemic, Christine Strang’s daughter, Jennifer, often attended the day program four days a week. It operated from 9 a.m. to 3:30 p.m, but now the service is being offered three days a week for two hours at a time.
“Now it’s like I’m a caregiver 24/7,” the Orillia woman said. “I love her dearly, but I need help, and what they’re offering isn’t enough.”
It’s been disruptive for Jennifer, too. The 41-year-old, who has cerebral palsy, had taken part in the day program for more than 20 years.
“She loved it. She had friends there. She’s missing all that interaction with people,” Strang said. “She’s much more agitated and anxious and bored. I try, but I can only do so much.”
Strang feels for families in the same situation.
“Most of the parents of these people are getting older and we’ve chosen to keep our person at home, and now you’re going to take this program away from us,” she said. “What am I going to do? I don’t know.”
The Hoover family is also dealing with the effects of the reduced programming.
Jamie Hoover, 43, used to take part in the day program for about 24 hours per week. Dropping it to six hours is “a drastic reduction,” said his father, Randy Hoover.
“He misses the social aspect with his friends.”
That became abundantly clear when Jamie, who is on the autism spectrum, was finally able to reconnect with his buddies at his birthday party recently.
“It was unbelievable how happy they were to see each other,” Randy said. “It really is an indicator that socialization is very important to him, and he’s lost that, primarily, at this time.”
Jamie takes part in the current programming on Mondays, Tuesdays and Wednesdays, as well as Zoom meetings on Tuesdays. Some of the activities take place at the Orillia Recreation Centre and St. James’ Anglican Church.
Jamie splits his time between his father’s and step-mother’s home in Oro-Medonte and the Orillia home of his sister, Lindsay Hoover.
“It would be nice to have a little bit more than six hours a week. Not that that’s a complaint. I would do it, and will do it, until I can’t anymore, but it has taken a number of hours away from his caregivers that we are now responsible for,” Lindsay said.
She is a teacher who is on long-term disability as she battles cancer, but if she does eventually go back to work, she won’t be able to take Jamie to the program. The other options would be to have Randy drive in from Oro-Medonte or to hire Helping Hands.
“This setup only works if you have a full-time person who’s got their days free. It’s really putting people in a difficult situation,” Lindsay said. “There’s definitely a ripple effect here that it’s having on caregivers, as well, and guardians.”
Part of the reason she and her husband bought a house where they did is because Jamie could safely walk to Empower Simcoe’s King Street building.
“I’m not comfortable with him walking to the rec centre or to the church or Tudhope Park. Crossing the highway? I don’t think so,” Lindsay said.
Outdoor programming would be cancelled depending on the weather, but the weather “never stopped Empower Simcoe from opening their doors,” she said.
“There was never a snow day there.”
The future of the King Street facility is one of many questions families have.
If day programming is allowed to take place indoors at facilities like the recreation centre and St James’, Randy isn’t sure why that can’t happen at Empower Simcoe’s building.
“It seems a shame that somebody’s paying taxes on that building and it’s not being used,” he said.
“We understand a lot of the staff have been redeployed to group homes, and we don’t know if that’s the issue,” added Heidi Hoover, Jamie’s step-mother.
It doesn’t make sense to Strang, either.
“I’d like to see the programs return to full days at the centre,” she said. “What’s the point in having that centre if no one’s in it?”
The situation has families longing for the pre-pandemic days, not just for the respite they received, but also, and mostly, for the experiences their kids enjoyed.
Jamie would use some of his time to walk around town and to volunteer at the library and St. James’.
“He’s lost the independence he had before,” Heidi said. “Now he’s more dependent — dependent on people to drive him.”
“The shift in responsibility of care has moved over to the parents significantly,” Randy added. “We miss the professional services Jamie has received for most of his adult life.”
It’s obvious Jamie misses them, too.
“He’s much more emotional than he used to be. He’s autistic, so he thrives on structure and routine, and that was abruptly taken away from him. It’s manifested in a lot more emotional outbursts. It’s been really isolating for him,” Lindsay said.
“He’s a resilient guy and he’s really good at seeing the best in negative situations, but I can tell this has taken a toll on him. He cries a little bit more than he used to.”
Jamie was a man of few words during a recent interview, but he was crystal clear about what he wanted to see happen with the King Street building: “Open it up.”
When, or even if, that will happen is not known. It was one of several questions OrilliaMatters posed to Empower Simcoe that went unanswered.
A statement from the agency read, in part: “We are here to support the individuals we serve to participate in community-based activities, and connections with their communities. The building is not a ‘program’; being active in community is inclusive.”
Other questions that were not answered related to whether the lease for the King Street facility would be renewed, if staffing levels were contributing to the reduced day programming, if the agency is still receiving the same amount of funding from the province and, if so, what that money is being used for.
Those are among the many questions Strang also has, and she appealed to Simcoe North MPP Jill Dunlop to try to get them answered.
“We need your help in this matter. Please reach out and help us,” she wrote.
A response from Dunlop’s office included information that was similar to that provided in Empower Simcoe’s statement to OrilliaMatters.