The evolving field of child-onset disability: Who needs to know what's new?

Abstract

The field of child-onset disability is in the midst of a significant expansion. We are recognizing the importance of an ICF-influenced view of child-in-family-in-community;¹ we are moving beyond the traditional focus on fixing, and are celebrating the strengths, achievements, and functioning of children and young individuals; and we recognize the family as situated at the center of our work, and as a fundamental partner in and focus of our interventions.² A considerable effort is underway around the world to promote these ideas, created the tools to activate them, and present the evidence that they matter.³

For many of us, the next frontier in this knowledge translation enterprise are the community-based individuals and systems whose roles impact children and families in myriad ways. These are individuals – in the educational systems, community-based agencies, policy-making roles – whom we encounter less often and have fewer opportunities to inform about the evolution of our field. We live in parallel universes: they rarely attend our meetings or read our journals; similarly, we do not normally attend their events or read their materials.

Consider a simple example. We are increasingly promoting the child (and their functioning) rather than the disability. Parents happily create F-words profiles to introduce their child as a whole person (https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability/f-words-tools). The technology-enhanced functioning of young children with impairments (e.g. in mobility or communication) who use alternate ways to do things conveys a picture of capability rather than disability. These kinds of interventions are being started very early in children's lives, often before they go to school. However, based on traditional thinking, many schools – teachers and school authorities – may be challenged to accept these children without medical services (therapies) to accompany them. They may still have expectations of interventions to promote ‘normal’ function,⁴ and be unprepared for this paradigmatic shift. And what are the policy implications of these new approaches?

As clinical practitioners, thought leaders, and researchers, how can we address this important challenge? It is our experience that the individuals who need to know – hard-working, dedicated professionals – are often unaware of the important developments in our field. That is the fault of no one in particular, but recognizing it allows us to seize opportunities to share our excitement about what is new, and how we can collaborate to enhance services and policies for the benefit of children, families, and the community as a whole. An approach that has worked at CanChild for many years is to invite leaders of these community-based systems to attend our conferences, or even simply to get together for coffee and a chat.

An exciting illustration of the fruits of this kind of relationship-building has been the adoption, by the Province of Ontario's Ministry of Children, Community and Social Services (MCCSS), of CanChild ideas like the F-words for Child Development and other tools, now mandated to be used in its revised SmartStart Hubs. They have also funded the creation of several F-words training modules (https://canchild-fwords.ca/). These developments support the argument that good people, working together with a common knowledge base and understanding, can make a difference for children, families, colleagues, and the broader community.

The challenge we all face is to become actively aware of who needs to know what, and how to start the process of connecting. Everyone wants to do the best job they can; as thought leaders we want and need to share our new ideas and the evidence that these ideas matter and can work to everyone's benefit. We believe, and need to demonstrate, that much of what we are promoting will be cost-beneficial to the systems in which children with child-onset disabilities are involved. In tandem together with developments at the clinical interface, we should now accept these exciting opportunities to move the community forward!

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