Canadian Disabilities Survey points up gaps in existing data on lives of children with disabilities and their families
Developing relationships with policymakers within government and ministries at both the federal and provincial levels has helped NeuroDevNet draw attention to the needs of children with neurodisabilities.
Key to this process has been the sharing of information on the prevalence of disabilities, and what is known about their impact on affected children and their families. At the same time, gaps in current provincial and national datasets make it difficult to truly illustrate life trajectory and the social contexts in which children with neurodisabilities and their families live.
"That story can only be told in full if the children with neurodisabilities and their families are visible," according to Dr. Lucy Lach, co-lead of the Network's Social Determinants of Health research group.
With the recent release of the Statistics Canada-produced Canadian Survey on Disability, Lach, and colleagues across the Network conferred about the visibility implications of the survey findings.
Amongst the issues identified were interactions with the education system, unmet needs around social and community support, high unemployment rates, and income disparities amongst people aged 15 and older who identified themselves or a family member as having a disability.
"The Canadian Disability Survey identified that 0.6% of Canadians in that age range have a developmental disability," said Dr. Lach. Of those who were aged 15-24, 1.2% reported having a developmental disability." The ability to track trends within a specific diagnosis is limited, because the sample size was too small for that kind of drill down, she added. "The CSD did not provide a checklist of diagnosed conditions. It asked about frequency of limitations in their daily activities."
Data provide insight on where we need to go as a society
The results were a welcome "justification of the need for early and comprehensive supports across many domains," said Dr. Jonathan Weiss, a psychologist at York University heading a project focusing on mindfulness meditation for youth with autism.
"The survey speaks (even if imperfectly) to the future challenges of children with a developmental disability (and their families and to the kind of future we are offering them," remarked Neuroethics co-lead Dr. Eric Racine. "My outlook is, perhaps less about the scientific value of these data as a researcher, but their meaning for where we need to go as a society."
In the Network's second funding cycle, the addition of a research group focusing on the Social Determinants of Health and their relationship with neurodevelopmental conditions puts emphasis on factors such as income, level of poverty, ethnocultural status, immigration status, educational achievement, stress, and access to health care and social services, in telling us a story about the scope of need among children with neurodisabilities and their families," said Dr. Lach.
"In our project," she added, we are using a number of different surveys to track some social determinants of health of children with impairments. For example using the National Longitudinal Survey of Children and Youth in Canada enables us to track levels of poverty over time, as well as social and community support, which includes things like education, and family wellbeing. That provided excellent data over a period of 15 years, but ended in 2010. We are also using the Participation and Activity Limitation Survey (PALS 2001, 2006) that provides a snapshot of children aged 0-14, and adults over age 15 with disabilities whose everyday activities are limited because of a condition or health problem.
"There is no contemporary, single dataset designed that specifically focuses on children with neurodisabilities that is sufficiently comprehensive enough to allow us to track outcomes or determinants over time, particularly moving forward," added Dr. Lach. The 2012 CSD is the most recent snapshot on disability, but with its focus on the 15+ age group, "it is not a survey that we can continue to use to track the outcomes of children and youth going forward. The last wave of data collection was in 2010.
"As a result," Dr. Lach concluded, "several large gaps exist in data that affect the ability to provide evidence about how the lives of children with neurodevelopmental impairments and their families in Canada are progressing."