“It’s affecting my health,” said choked-up Mary Beth Rocheleau, a Windsor mother who’s planning a future rally at Queen’s Park. She’s hoping the attention garnered will help eliminate waitlists for young adults who have a disability in need of funding while they transition from the Ministry of Child and Youth Services to the Ministry of Community and Social Services.
“It’s worn me into the ground because, if I don’t [fight], my son doesn’t get what he needs.”
Rocheleau’s 16-year-old son, Gregory, has autism, does not speak and needs round-the-clock care.
“My son doesn’t sleep,” she said. “I’ve got to go to work. I work shift work. I can’t afford to miss time. I have to pay for caregivers, and if I can’t pay for caregivers then I can’t go to work.”
Rocheleau believes that people who have an intellectual disability deserve to be treated as citizens and receive the community support that will help them to thrive.
To that end, she wants to bring the government an “…awareness that they have a crisis on their hands, number one, to get that transition sped up from child to adult services. I want to talk about the housing issues and the amount of support that [people] are getting, because it’s not enough.”
As it stands, people receiving funding from the Ministry of Child and Youth Services lose it when they turn 18. They must then apply to the Ministry of Community and Social Services, a process which, if successful, puts them on a waitlist for services, during which time parents must pay any health or care-related fees out of pocket.
Compounded with the fact that their children’s needs often require parents to quit their jobs, the effects can be devastating.
Combining that with limited options for residential support due to further waitlists, Rocheleau worries about what happens to Gregory when she’s gone.
“I want to keep him at home as long as I can, but I have to prepare,” she said.
She’s been told, in that situation, her son would be sent to a nursing home.
“Really? Have you seen the government-run nursing homes? They’re not pretty.”
Rocheleau was inspired to begin planning for the rally after attending a meeting last month hosted by Windsor West MPP and NDP Critic for Community and Social Services Lisa Gretzky. There, she heard stories from other parents affected by the waitlists, including a mother who is unemployed and is forced to use her daughter’s ODSP payments to make ends meet.
Rocheleau says there’s a lot more to Gregory than meets the eye.
“He’s very loving, he’s fun, he has an infectious smile, and I truly believe that he can understand everything that I tell him, but he can’t speak back.
While some people who have autism and cannot communicate verbally can get messages across in other ways, such as with an iPad, Gregory isn’t so lucky. Diagnosed at 18 months old, “he’s suffered his whole life because he hasn’t been able to communicate.”
Through intensive, private applied behaviour analysis therapy, Rocheleau’s son now points to pictures of what he wants, alleviating some stress for all involved. But life is still quite difficult for Gregory.
“I’m really bitter with the government that they could be so heartless with [people who have a disability],” Rocheleau lamented.
As election season approaches, she sees this as the perfect time to get government on-side.
“As parents, we really, really have to stick together on this. It’s a critical time to get them, before the election.”
To make sure her message hits home, she plans on bringing a support worker with her so that Gregory can be there, too.
“I want my son there. I want people to see my son. He’s worth every effort that I’m giving this. He’s worth the government’s help. He’s a human being. He has a heart, he has a soul, and he doesn’t deserve to be stuck in a nursing home.”
The rally is tentatively scheduled for May 10th. To get involved, visit Rocheleau’s Facebook page by clicking here. She can also be reached at 519-819-0709.
Daniel Share-Strom, Community Living Ontario