I don't know about you, but I believe celebrating the bright spots in the world is a critical part of creating and sustaining change. I am absolutely thrilled to announce the launch and release of 3 resource guides, Living With CP, supporting families and their children with cerebral palsy and complex needs within Vancouver and surrounding area. It has been a great honour to be part of the Vancouver Island Cerebral Palsy Awareness Project with Cerebral Palsy Association of BC and their outstanding team funded by Children's Health Foundation of Vancouver Island and in collaboration with brilliant organizations and families living with cerebral palsy throughout Vancouver Island reflecting the diversity of our communities.
These organizations include:
Drawing on the Belonging Matters framework and process, together we have created local, strength-focused and culturally safe resource guides to help children, youth and families living with cerebral palsy navigate the system and create a supportive network so they can thrive.
If you’d like to celebrate these leaders and access the resource guides, please register below:
3 Principles That Guide Our Work So Families with Cerebral Palsy Can Thrive
What I am most proud of about this collective work is the weaving in of 3 key principles at the heart of all initiatives integrating a Belonging Matters approach:
#1: People with Lived Experience Are the Experts.
One of the joys in working on this project has been our common principle that the people most impacted by cerebral palsy are the experts. Every step of the way, the voice and leadership of youth and young adults with cerebral palsy was supported and integral to the process and the outcomes.
You will find the voices and leadership of Melissa Lyon, Patrick Aleck and Luka Garvin woven throughout these resource guides. Their leadership was key in the project development and facilitation of the stakeholder meetings and workshops to gather these content-rich and value-packed resource guides.
Check out what they have to say about the process:
You will find the voices and leadership of Melissa Lyon, Patrick Aleck and Luka Garvin woven throughout these resource guides. Their leadership was key in the project development and facilitation of the stakeholder meetings and workshops to gather these content-rich and value-packed resource guides.
Check out what they have to say about the process:
Patrick Aleck: “The process of working on this project gave me another level of accepting my disability and being proud of my cerebral palsy. As a result, I am more confident and aware of my body. It felt good to help others help themselves with something so practical for families.”
Luka Garvin: “This was the most transformational program I have been involved in. The Belonging Matters program is like yoga on a seesaw; you are able to have the support you need in order to get to those places your body, brain, soul and intellectual self needs.”
Melissa Lyon: “The Belonging Matters Conversations gave me more confidence in myself and my strengths. As well, the dialogue process helped me to accept my cerebral palsy and made me feel more comfortable talking about my disability. Importantly, the experience made me aware of what’s possible on both personal and community levels. I am so grateful for Jessie's guidance and the opportunity to help address a long-overdue need for more connection, resources, and awareness in the community.”
#2: Strength-Focused Approaches Build Belonging & Competency.
In every initiative that draws on the Belonging Matters framework, one of our early steps is to apply a strength-focused approach. Rather than building a supportive network solely through a needs-based lens, we ask…
What are the factors that will create the conditions for children, youth and families with cerebral palsy to thrive?
This question led the outstanding team at the Cerebral Palsy Association of BC to bring forward the 5 F-Words in Childhood Disability model created by Dr. Rosenbaum and Dr. Gorter: Family, Friends, Function, Fun, Fit and Future.
Our leadership team (aka, Cerebral Palsy Champions) took a look at this model and broadened it for these resource guides. Together, we created the following categories:
Our leadership team (aka, Cerebral Palsy Champions) took a look at this model and broadened it for these resource guides. Together, we created the following categories:
In the resource guides, you will find these headings with what we mean by them, followed by practical resources for families with cerebral palsy to be able to build their own supportive network.
#3: Honouring Indigenous Knowledge Ensures Cultural Safety and Fosters Genuine Collaboration.
Early in the process, we built relationships with local Indigenous families, communities and organizations. We ensured Indigenous representation on the cerebral palsy leadership team, invited Indigenous organizations and communities to focus groups and the project’s working group.
In particular, Maria Sampson from Victoria Native Friendship Centre provided expertise and guidance on ensuring the land acknowledgement and content of the resource guides are culturally relevant and safe. Along with local elders Yvonne Rigsby Jones and Chief Robert Joseph, Maria also shared Indigenous teachings related to each to each of the categories in the resource guides during our stakeholder information gathering sessions.
In particular, Maria Sampson from Victoria Native Friendship Centre provided expertise and guidance on ensuring the land acknowledgement and content of the resource guides are culturally relevant and safe. Along with local elders Yvonne Rigsby Jones and Chief Robert Joseph, Maria also shared Indigenous teachings related to each to each of the categories in the resource guides during our stakeholder information gathering sessions.
Maria Sampson
Yvonne Rigsby Jones
Chief Robert Joseph
Thanks to the foresight of the Cerebral Palsy Association of BC and the generous funding from Children’s Health Foundation of Vancouver Island, we were able to take our time to build those foundational relationships to ensure:
In my experience, when we go slow and build meaningful relationships that reflect the diversity of our communities, that is when innovation happens and beautiful co-created outcomes like Living with CP: A Resource Guide for Families and Their Children with Cerebral Palsy and Complex Needs.
Party Time: Celebrating New Guides for Families Living With Cerebral Palsy
I hope you’ll register for and access these guides. You can also read more about the project here.
To learn more about the Belonging Matters framework for creating awesome resource guides that build supportive networks where people thrive, connect with me here.
To learn more about the Belonging Matters framework for creating awesome resource guides that build supportive networks where people thrive, connect with me here.
