“What we want for our son is exactly the same as for our [typically developing] daughter – a life where he is happy, fulfilled, safe, connected to his community, a contributing member of society and his community in the fullest capacity, socially connected – based on his goals and interests and what HE wants to do.”
More than 350 family leaders, clients, former clients, clinicians, researchers, educators, leaders and external experts participated in eight “Strategy Hives” over the past three weeks to share their deepest hopes and creative ideas for the future for kids, families, Holland Bloorview and the world they live in.
The mother of a young adult who is a former Holland Bloorview client quoted above expressed the most significant theme of the hives: kids and adults with disabilities and their families want the same things as everyone else from their lives; and Holland Bloorview has unique expertise and opportunity to help make that possible. Every session was thoughtful, passionate and bold, and underlined that everyone involved wants to bring their expertise and experience to making ideas real.
Over the next few weeks, we will be crafting the insights and recommendations from the hives into a draft strategy, with a clear vision and actionable priorities. Among many other ideas, the strategy will be guided by a few powerful themes that cut across all eight sessions:
- Holland Bloorview can be a leader and influencer in creating a world where disability and varying abilities are fully recognized as a form of diversity.
- Every child and family should have an individualized pathway for care and services. Person-centred, individualized planning should be infused across all services across Holland Bloorview from the first point of intake and the earliest age. This should extend into an easy way to connect to the portfolio of resources and services available within Holland Bloorview and across health and other systems.
- Holland Bloorview will develop and share expertise, evidence, innovation and client-engaged technology that revolutionizes people’s experience of ability, independence, connectedness and community, “care anywhere” and smarter delivery of services.
- Holland Bloorview will be the global leader in recognizing that every child and family has the right to the best evidence-informed care and practices. We will prioritize teaching, knowledge development, rapid translation and real-world implementation of science that enables us to bringing cutting edge research as quickly as possible to clients and families here and around the world.
Against these themes, participants explored multiple concepts ranging from how Holland Bloorview builds capacity in the wider world, the kinds of partnerships we need to build and strengthen, the specific needs for transitional aged youth, how to increase access for services for kids with Autism Spectrum Disorder, and what it might mean to structure care according to need, not diagnosis.
In exploring the concept of what a truly person and family centred intake could look like, one parent described her hopes in a way that captured the essence of all of the ideas: “I would love an intake process that looks a bit like drawing a picture – someone understanding my daughter and my family –engaging us in what that picture should/could look like and then we draw that picture – it would take away the compartmentalizing of what she has – makes her into a person and makes us into a family that can achieve anything.”
At the end of one session, one participant said “I’m very encouraged by having a conversation about what we can do and not what we can’t.” That statement captured the overall feeling of the sessions: that the Holland Bloorview community and its partners recognize what is most needed for care and services that truly enable kids with disabilities and their families to thrive – and that there is huge energy to make it happen.