Tired of advocating alone 'like islands in the sea,' families of people with disabilities band together

A group of Manitoba parents and family members of people with disabilities are coming together to support and advocate for each other, and fill the gaps in a system some feel they’re left to navigate alone.

Group lets family members advocate for each other, fills gaps in a system they feel they navigate alone

Gloria Woloshyn, right, stands with her daughter, Jaylene, at her high school graduation. Jaylene has a chromosomal condition called Prader-Willi syndrome. (Submitted by Gloria Woloshyn)

As a single mom of a daughter with a disability, Gloria Woloshyn said she sometimes feels afraid for her daughter's future.

She's advocated for Jaylene, now 23, ever since she was born with Prader-Willi syndrome, a genetic condition that, in Jaylene's case, caused cognitive impairment and insatiable hunger.

But Gloria knows she won't be able to do that forever, and she's sometimes felt that she's doing it alone.

"I'm getting older and I want to be able to have her happy and safe while I'm here to advocate for her," she said.

She's felt isolation and frustration with funding in the system, although she recently succeeded in securing Jaylene a spot in supported housing.

"It's a big fear of mine right now, for her future, because of the way the system is right now. It feels like it's worse than it even was, like, five or so years ago, with the lack of supports and ... so many people getting told 'no' that are in my situation."

Gloria Woloshyn cares for her daughter, Jaylene, who has Prader-Willi syndrome. 'I'm getting older and I want to be able to have her happy and safe while I'm here to advocate for her,' she says. (Warren Kay/CBC)

Even though she's felt alone, Woloshyn is one of many parents working through the system to get services for their children. A Statistics Canada survey in 2012 found more than 145,000 Manitobans over 15 say they live with a disability. Just over two per cent of Canadians older than 15 said they have a learning disability.

To address frustrations like hers, Woloshyn and 150 other Manitoba parents and family members of people with disabilities are coming together in person and online in a new support and advocacy group, filling gaps in the system some feel they've been left to navigate alone.

"So many of us speak about the lack of supports or the inadequacies in the system, but we're like islands in the sea," Woloshyn said.

"We've been fighting individually. And I believe through the Family Advocacy [Network], we can join forces and be able to advocate for changes and lessen our fear."

'A place to start'

A spokesperson for Manitoba Families said in an email the province provides funding to 96 agencies to deliver residential and day services to adults with intellectual disabilities.

"The department is also currently working on new funding models for these services to better meet the needs of Manitobans with disabilities and the agencies supporting them," the spokesperson wrote.

The Family Advocacy Network grew out of the work of some of those agencies, after family engagement meetings run by Community Living Manitoba, Inclusion Winnipeg and other organizations in the city last year.

During those meetings, Woloshyn and other parents gathered the names and email addresses of people who were interested. They started a Facebook group and had their first in-person meeting in March, followed by another in May where they chose their official name.

Scott Smith stands with his family, including, left to right, his son Hayden, his wife Rachel, his son Liam and daughter Willa, and his son Ryder, front. (Submitted by Scott Smith)

Scott Smith, one of the parents who helped spearhead the group, said it's all about families helping families.

He's also felt isolation as he worked through challenges facing his eight-year-old son Ryder, who has cerebral palsy. There's no starter manual, he said — although he and Woloshyn hope the Family Advocacy Network can grow to help fill that role.

"It's a place to connect with other parents, and it's a place to ask questions that you feel comfortable with someone asking those questions," he said.

"It's a place where you don't have to feel alone being a parent anymore."

A seat at the table

The group's work on advocacy is already underway. They met with the deputy minister of Manitoba Families last month to talk about concerns around the pay, training and turnover of support workers, and a spokesperson for the department confirmed another meeting is scheduled for November.

"[We] look forward to continuing to work with stakeholders and agency partners to address challenges in recruiting and retaining staff," the spokesperson wrote in an email.

Smith's son Ryder, 8, has cerebral palsy. Smith said his other three children, including Ryder's twin brother Hayden, all work together to support Ryder, too. (Submitted by Scott Smith)

Woloshyn said they hope to attract more members to strengthen their voice, and expand their advocacy to other areas in the system.

"There's interest, but we would really like to see more participation," she said. "We need more bodies to help us to do the work that's required."

The next meeting of the Family Advocacy Network is scheduled for Oct. 14, for members only.

If you'd like to become a member, you can visit the group on Facebook.


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