Alberta is often considered one of Canada’s most resource-rich provinces when it comes to supporting people with neurodevelopmental disabilities. Yet families continue to fall through the cracks and fail to be adequately supported. The Edmonton arm of the project wanted to know more about this.
The team has met with more than 200 families, self-advocates, and service providers across Alberta to try and answer this question. They’ve asked families to identify barriers they have faced in accessing services and what an ideal system would look like to them. Many families report having to jump through multiple hoops to access services and say that information provided to them can be inconsistent or incomplete.
The team has also connected with a number of government ministries and other stakeholders, as a way of bringing them together to discuss how to improve system navigation for families of children living with neurodevelopmental disabilities.
“It’s figuring out what’s needed and who is going to own which piece of it,” explains Dr. Lach. “It’s easy for an organization to say, ‘that doesn’t fit here’ and pass the responsibility on to another organization.”
“In bringing representatives from organizations that represent different ministries together, what the Edmonton group is doing is creating this much more integrated understanding of how navigation and access to care is not just the family’s problem or just the school’s problem—this is a systems issue. The systems need to come together and take responsibility for improving that experience.”
The project sites are located in the Yukon, Edmonton and Vancouver. Each site is engaging partners who are involved in delivering services and supports in many different areas—health, justice, and education, to name a few—and span across different types of care including diagnostic, intervention, and treatment.
What have we learned?
Where do we go from here?
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