Author: Karen Copeland
It was a true honour when the Minister of Children and Families, Stephanie Cadieux joined me in Abbotsford a week ago to hear more of our family story (read I Am “that” Parent). I sincerely appreciated the Minister’s curiousity about our experience within the systems that are available to support us.
In the meeting, I presented not only our own family service journey map but also maps created by three other families. This was to illustrate that it is not just our family who is experiencing difficulties trying to get support. And that our family story, while unique in its own right, is similar to many other families across the province. The map does not reflect the entirety of services we have accessed for our child and family over the years, but it does give a picture of the types and number of services we have explored. It also gives a sense of the “systems language” we needed to learn – and guess what? Each system has their own! In the case of the Ministry of Child and Family Development, each department has their own “language”. This is a huge barrier for families because if they do not use the language of the “system”, their message is often not understood and can even be disregarded.
The map is designed to create impact – to show how many services families are accessing and how these services often work in isolation from one another. Notice the “Family” is at the centre of the map. The family is responsible for coordinating all the services and supports that are required, and ensure information gets communicated between “silos” (Ministries of Education, Health, and Children and Families; as well as public agency and private services). Sometimes the silos will bypass the family completely and communicate with each other only!
The map is not linear and this is on purpose. Our life does not feel linear, in fact it feels like we jump from here to there and back to here, sometimes with no real purpose other than it is what we have been directed to do. The map also does not illustrate the multiple interactions within each service. For each service box there may be many phone calls, emails, meetings, etc. Trying to coordinate all these services could be considered a full time job.
I think one of the biggest challenges I have faced over these last years is having my voice and my knowledge of my child listened to and heard. It is far too easy for systems to circle their wagons of “expertise” (intentionally or unintentionally). It is no wonder families are feeling overwhelmed. Often it is not because of our child’s challenges, but because of the myriad of services and systems we are trying to access for support and the way we are regarded within them.
Minister Cadieux appreciated how the maps were able to show the complexities of trying to navigate multiple systems to access care for our children and youth. There is no easy solution or quick fix to the difficulties families are facing, but perhaps the starting point for change is awareness of the family journey.
When the fragmentation of services stands out so clearly, perhaps we can become more motivated to explore how to make a difference. Not just in government programs, but within our own communities.
And maybe, the next time we meet or see a parent who has a child who is behaving in a way that is unexpected, we might think about this post and wonder about their story.