12/21/2017 09:12 EST | Updated 12/21/2017 10:38 EST

Updated Data On Children With Disabilities Is Needed For A Better Future

We are lacking critical information on the diverse and often unmet needs of this group, as well as the out-of-pocket costs paid for by families.

According to UNICEF, "The true measure of a nation's standing is how well it attends to its children, including their health, safety, material security, education and socialization and their sense of being loved, valued and included in the families and societies into which they are born." Yet how can we measure our nation's standing when we have stopped measuring the health and wellbeing of our children in Canada, particularly those with a disability?

Existing national population data is out-of-date, with the most recent data on Canadian children with disabilities almost a decade old. Three of the four population-based disability surveys for children are no longer active, meaning we are lacking critical information on the diverse and often unmet needs of this group, as well as the out-of-pocket costs paid for by families.

In this dearth of information, how can we design effective policies and programs that improve the social, health, employment and economic outcomes for children with disability and their caregivers?

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Let's take developmental disability as an example. As many as 850,000 children in Canada are estimated to be living with a brain-based developmental disability. This group faces life-long challenges with mobility, language, learning, socialization and/or self-care, which impacts their quality of life and creates special challenges for their families. These children also typically have poorer health, lower educational achievement, fewer economic opportunities and higher rates of poverty than children without disabilities.

These are, unfortunately, some of the only unifying features of this heterogeneous group. The nature and needs of children with a disability are diverse, varying from child to child, requiring unique combinations of targeted supports. Yet the lack of data means that we know very little about how adequately existing services and supports are meeting — or failing to meet — the diverse needs of these children.

As Margaret Chan, the former Director-General of the World Health Organization, has said repeatedly, "what gets measured gets done." A first step is to better understand the needs of this underserved population. Better information on the nature and needs of children and youth with disability is essential for policymakers at all levels of government to predict and plan for improved provision of efficient, equitable and inclusive services and supports.

These initiatives do not describe the current or changing prevalence of disability across Canada.

Better data will also allow for a deeper understanding of the education and employment requirements, how these influence important outcomes such as income, as well as challenges in accessing services for those with disability.

A few provinces are leading the way to help researchers and policymakers better understand the nature and needs of children with disability. For example, Alberta established a child and youth data lab exclusively dedicated to understanding the impacts and policy needs that will optimize the well-being and future potential of its youngest citizens. The Manitoba Population Research Data Repository is a comprehensive collection of administrative, registry, survey and other data relating to Manitobans. This information helps identify health and social policy tools that can be developed to address needs.

Yet these initiatives only partially address the problem. They do not describe the current or changing prevalence of disability across Canada. Nor do they provide much-needed national longitudinal data to determine the well-being of children in different provinces. They also are less helpful in designing and evaluating policies and services in other provinces or territories in Canada.

How do we resolve these important issues?

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In the short term, increased coordination of existing repositories of data on this population is needed, as well as better access for researchers and analysts. Linking provincial-level administrative data is another promising possibility to improve our understanding of the economic and social impacts that children and their families experience.

In the longer term, federal investment in national longitudinal data on children and youth with disabilities is needed. With needs identified, they can be addressed.

Fortunately, Canada has a world-class network of interdisciplinary clinicians, researchers, patients and family stakeholders, with the CHILD-BRIGHT network and Kids Brain Health Network meeting in Toronto for a conference in order to work toward this goal. These networks play an important role in translating measurement from population data and scientific evidence into better care, to create meaningful change in the lives of children and families.

But this cannot happen in the current paucity of information. Failure to act now will inevitably leave some behind, and will have long-lasting ramifications on the lives of our children and the broader society.

It is time for Canada to measure up.

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