Federal Accessibility Legislation: Why Canadian Children with Disability need Meaningful Policy Leadership

Canada currently has no comprehensive national legislation protecting the rights of people with disabilities to participate in education, work and daily activities. This is particularly concerning since Canadian youth with developmental disabilities have poorer health, lower educational achievement, fewer economic opportunities and higher rates of poverty than people without disabilities.

Federal leadership is needed to reduce barriers for inclusion and foster compliance with the United Nations Convention on the Rights of Persons with Disabilities. In a promising step forward this year, the Government of Canada began public consultation on desperately needed accessibility legislation. A better understanding of the education, and employment needs and challenges in accessing services for those with developmental disability can help in designing policies to address barriers and plan for greater inclusion of future generations.

Approximately one in twenty Canadian children and youth have a disability, and it is estimated that 74 per cent of these are identified as having a developmental condition and disability. Developmental deficits can range from specific limitations of learning or control of executive functions to global impairments of social skills or intelligence. As a result, service and support needs can vary for those with developmental disabilities, making one-size-fits-all legislation ineffective.

Better information on the needs of children and youth is essential. The first step in developing national polices for efficient, equitable and inclusive services and supports for those with developmental disability is a better understanding of needs and challenges. There is very little data in Canada describing how adequately services and supports are meeting the diverse needs of children and youth, which is what makes the current public consultation even more important.

The lack of comprehensive data (administrative or population-based) about children and youth with developmental disability makes it difficult for policy makers at, all levels of government, to predict and plan for better provision of services and supports. A recent study supported by the Networks of Centers of Excellence NeuroDevNet encourages researchers to utilize data that is available and highlights the large data gap that currently exists for child and youth health and well-being, particularly for children with developmental disabilities.

The authors from Statistics Canada provide helpful information on functional health and disability, social inclusion or exclusion and the role of social determinants in the lives of these children and their families. Unfortunately, this information is out of date and not enough. Three of the four population based surveys for children and youth are no longer active; our most recent data on Canadian children with disabilities under the age of 15 is from 2009. Information is also lacking on many of the out-of-pocket costs paid for by families.

Evidence based policy requires data. In the absence of national survey data, linking administrative data is one promising possibility to improve our understanding of the economic and social impacts, and functional limitations in daily living, that children and their families experience. There is clearly also a need for up-to-date longitudinal data describing vulnerable child and youth health and well being.

The stated goal of the planned accessibility legislation is to “promote equality of opportunity and increase the inclusion and participation of Canadians who have disabilities”. Investing in long-term data focused on children and youth with disabilities is one important component.

Developing legislation that moves values into action requires meaningful consultation; provide your feedback online or in person to improve accessibility and inclusion for people with disabilities in Canada.