Giving A Voice To Children's Rights

By Keiko Shikako-Thomas, PhD, OT, Canada Research Chair in Childhood Disability: Participation and Knowledge Translation, McGill University and Meaghan Shevell, MA Human Rights, Participation and Knowledge Translation in Childhood Disabilities Lab, McGill University

Keiko Shikako-Thomas will meet with the CRPD Committee to increase their awareness of the issues that she elaborates on in her blog post.

"There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want and that they can grow up in peace." (Kofi Annan)

Every adult of today was a child first. But do children have a voice in matters that are important for them? Do children with disabilities and their families know they have rights? Does Canada respect their rights? 

There is a reason why children have their own human rights treaty: the Convention on the Rights of the Child (CRC), and why they have a dedicated section in the Convention on the Rights of Persons with Disabilities (CRPD). The reason is that the issues that affect children are intersectional in nature: they cut across the boundaries of health, education, welfare, and employment (for their parents to provide the supports they need to grow up, and for themselves as they transition from educational to work settings). Children also make up a significant percentage of historically and systematically discriminated groups, such as Indigenous, women, people with disabilities, immigrants, refugees, and racial and ethnic minorities. However, despite this representation, children often fall through the cracks in services and provisions offered to these groups, as they are often designed exclusively by adults with adults’ needs in mind.

Children with disabilities experience similar challenges as adults in terms of inclusion, integration, participation, and accessing human rights, but they also experience added barriers, as they often do not have a voice in matters that affect them. Children with disabilities are not typically consulted in decision-making that affects them, or in determining what is in their best interest. Indeed, they are frequently not represented in advocacy, policy or service delivery.

Across Canadian provinces, families of children with disabilities face significant disparities in the types of services they are allowed to receive in terms of their health--what therapies are available early on to guarantee the best possible start in life, and later on as they transition from pediatric to adult care; education--what educational settings (the supports available in both integrated and segregated schools) are available to facilitate their learning; and in the community--what opportunities they have to play, to engage in physical activities, to participate in their communities and to build on their social and citizenship skills.^{1, 2}   This intersectional discrimination is further complicated by regional discrepancies: across provinces and territories, on and off reserves, and in rural and urban areas.³

Canada has not collected data on children with disabilities since 2006.  Canada’s current data collection tool, the Canadian Survey on Disability, excludes children from birth to age 14.  Without this information, targeted programs cannot effectively be formulated to specifically address and improve the situation of children with disabilities in Canada.

Governments and societies must also address the challenges that family caregivers face. There is mounting evidence⁴  revealing that the burden of care overwhelmingly falls on family members (particularly women) rather than the state, which can result in their eventual disability. In support of Article 6, appropriate caregiver support must be provided to minimize the mental and physical effect on caregivers.  Given the opportunity cost (i.e. reduced hours of paid work) family caregivers experience, particular budgetary lines to consider could include respite care, intermittent leave to bring children to appointments, tax breaks and a caregiver income.

Based on existing research and listening to what children and families have to say, suggestions on measures that Canada could take to give children with disabilities a voice and enjoy their human rights on equal footing include:

• Collect data concerning children with disabilities and their families so that policies, programs and services are evidence-based decisions, in order to best meet the needs of this population and their families.
• Develop family-centered and child-centered services to support families accessing services and resources and give families autonomy to decide how they want to spend funds related to their child.
• Increase its capacity to support services for children with disabilities on reserves and in rural communities.
• Develop mechanisms to share success stories and positive models across provinces to reduce disparities in the provision of services, including transition to adult services, across the country.
• Include the needs of children with disabilities in leisure, sports, parks and recreation, and community development that focus on participation in leisure.
• Consider the differences in educational opportunities available across provinces and establish a benchmark for language equality and acquisition of Sign language with a view to ending language deprivation.
• Foster self-advocacy initiatives for children and youth with disabilities to learn about their human rights, have access to positive role models, and learn necessary skills for full participation and citizenship.

1. Shikako-Thomas K, Shevell M, Lach L, Law M, Schmitz N, Poulin C, Majnemer A and the QUALA group. Are you doing what you want do? Leisure preferences of adolescents with cerebral palsy, Developmental Neurorehabilitation, 18: 234-240, (2015).
2. Dahan-Oliel, N., Shikako-Thomas, K., & Majnemer, A. (2012). Quality of life and leisure participation in children with neurodevelopmental disabilities: A thematic analysis of the literature. Quality of Life Research, 21(3), 427-439. Retrieved from http://www.jstor.org/stable/41445069
3.The Jordan’s Principle Working Group (2015) Without denial, delay, or disruption:
Ensuring First Nations children’s access to equitable services through Jordan’s Principle. Ottawa, ON: Assembly of First Nations.
4. Ibid. (Raina, P., et al. (2004). Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC pediatrics, 4(1),