A coalition of B.C. disability groups has launched a new social media campaign pressuring the provincial government to fix what it calls a “broken” support system.
The “I am one of them” campaign involves videos featuring nine families with kids who need specialized support services.
“This is the child that is experiencing the system, this isn’t just a number,” Nanaimo mother Ashley Gardner said of the videos.
Gardner’s five-year-old son Daniel, who is legally blind and has autism and epilepsy, missed weeks in the classroom at the start of the year due to a lack of educational assistants.
She said her trouble getting him the support he needs was just the latest incarnation of a system that siloes services provided by different ministries, leaving parents exhausted as they try and navigate the bureaucracy.
“They are not interconnected, they are not viewing the child as a whole — it’s a full-time job to try and get what you need to get your child the equal access and opportunities and support they need, and a lot of times, you can’t even get them, even when you are fighting all the time,” she said.
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“My hobby, my personality, is being my son’s advocate … it impacts work, it impacts our social relationships, our mental health, our quality of life.”
The video campaign is an initiative by the B.C. Disability Coalition, an alliance of 19 advocacy groups for families with complex needs.
Coalition chair Pat Mirenda says people with disabilities often need a variety of services from multiple ministries, including the ministries of Health, Education and Children and Family Development.
“There’s not good coordination,” she said.
“So for families, what that means is when I need something, I don’t know who to go to, I don’t know who to access, I spend half of my life on the phone or on email trying to figure out who to talk to, and that’s really problematic.”
The coalition is calling on the province to commit to “cross-ministerial investments” to better coordinate services and simplify the system for people and families with disabilities.
Mirenda said people with disabilities have not been a priority for provincial or federal governments. As a result, programs that support them have been starved for funding, she said.
But she said high-profile cases like the tragic starvation death of Florence Girard and media attention to stories like Gardner’s or that of B.C.’s deaf-blind community are having an impact — one they hope the new campaign will heighten.
“If there are enough drops in the bucket, maybe the bucket will get full and people will pay attention,” she said.
“We’re tired of this, this is ridiculous, this has to stop.”
In a statement, the Minister of Children and Family Development Jodie Wickens acknowledged the challenges parents are facing.
“We must do better – and it is so important to draw on the firsthand knowledge and experience that parents, caregivers, service providers, support workers and advocates have to offer,” she said.
The Wickens added the ministry was committed to “strengthening and aligning” services with the health care system, a direction included in both her and Health Minister Josie Os
, saying it is working to align its mandate to work better with the Health Ministry and improve services.
