In Canada, 850,000 children self-identify as living with a disability. Despite this number, the disproportionate impact of social determinants of health (e.g., income, education, social exclusion) on the well-being of these children is often overlooked. Ignoring the impact of these factors when designing policies and programs for children can lead to increased risk of cardiovascular disease and mental health problems, reduced social participation, increased health care system utilization, and increased caregiver burden.
COVID-19 has amplified these risks and increased vulnerability by disrupting services and supports for these children and their families, highlighting the need for policymakers to prioritise the needs of these children and the contexts in which they live going forward.
One way to achieve this is to adopt a human rights-based approach to policy design. This includes taking steps to enshrine human rights language and protections in legal frameworks, designing programs to promote human rights by taking into account the specific rights of children and persons with disabilities, and implementing such laws across jurisdictions. It also means developing mechanisms for individuals to access these rights and to quickly remedy any violations.
The most effective way to achieve this goal is to promote the participation of this group at all stages of policy design and implementation.
People with disabilities must be included as equal partners and leaders in programs (e.g. public hearings) to promote participation in policy-making, identification of policy targets where human rights are systematically violated, assessment of the impact of all policies on the human rights of marginalized groups, incorporation of human rights language in policy documents, and allocation of sufficient and sustained budgetary resources to evaluation and monitoring, data collection and accountability mechanisms.
The United Nations and disability groups have advocated for a rights-based policy approach. As a signatory to the UN Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child, Canada has committed to a human rights-based approach to governance. This includes promoting policies and programs designed to ensure the equitable realization of the rights of people with disabilities so that all children enjoy equal health and development opportunities.
Studies of diverse groups of children with disabilities before and during the pandemic have highlighted existing gaps: from the perspectives of families and caregivers, challenges of distance learning (e.g., inaccessible infrastructure and resources for online education, interrupted daily routines, and mental stress), loss of medical and therapeutic services, loss of home-based support services, social isolation, and slower recovery after the pandemic.
COVID-19 has also revealed that children with disabilities were vulnerable to poor health outcomes even before the pandemic. New challenges have also exacerbated issues such as mental health, with behavioural dysregulation, sleep disorders and increased stress and anxiety that often persist after the pandemic. Poor mental health has been identified as one of the “top 10 threats to Canadian children”, yet an academic review of pandemic preparedness found that few policies address the mental health of children with disabilities, and even fewer offer strategies or solutions.
Recommendations from a multi-organization consultation highlighted five priority areas for children in Canada: Taking a rights-based perspective, the report recommends involving children with disabilities in decisions that affect their health: To foster meaningful involvement, children with disabilities must be made aware of their rights and be given the opportunity to participate in consultations.
It is also important to ensure that everyone is actively involved in policy development, accessibility and information sharing through education and health systems. This includes ensuring participants are compensated for their time and expertise (such as childcare, providing child-friendly information before consultations, maintaining “safe spaces” where children can speak and participate, and addressing language and accessibility needs).
Another priority highlighted was supporting intersectional issues such as children with disabilities who identify as LGBTQIA+, children experiencing homelessness, and children facing institutional care and poverty. Research should seek out underrepresented perspectives of families considered “hard to reach,” such as fathers, parents of children who identify as LGBTQIA+, low-income families and people of colour, immigrants and newcomers to Canada, and Indigenous children with disabilities.
The work of parliamentary and senate committees addressing the rights of children with disabilities has shown an increased focus on areas related to child disabilities, particularly in the areas of accessibility, child health and early education.
However, child-centred and disability-inclusive accommodations are still needed across jurisdictions. Research and public consultations are underway through the National Autism Strategy and the Canada Accessibility Act to develop accessibility standards. With the right perspective, these policies can support multiple aspects of community life, health and inclusion for children with disabilities.
However, while the National Autism Strategy engages families and caregivers, the proposed roadmap for implementing the Canada Accessibility Act makes little mention of children and youth. Considering the special accessibility needs of children with disabilities in federal jurisdictions could serve as a model for consideration of children’s disabilities in all jurisdictions.
For example, efforts to promote accessibility should include building inclusive communities that include schools, health facilities, playgrounds, and more, in addition to transportation. Availability of playgrounds is a key predictor of children’s healthy physical and mental development. Natural physical activity helps prevent physical decline as children grow and is essential to a child’s overall development.
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However, playgrounds are often inaccessible to all children with various disabilities. Lack of accessible changing areas, play equipment, water fountains and active transportation remain concerns. Access to information is also a barrier. The Jooay app, available across Canada, is a resource that provides information on inclusive leisure and accessible play opportunities.
Comprehensive and accessible data that focuses on the needs of children with disabilities is also important. In 2017, the United Nations called on Canada to collect data to monitor factors related to children and youth, including disaggregated data by disability, age and other factors, to address inequalities between groups.
A consistent and comprehensive data collection strategy will help set clear priorities and benchmarks, which should include funding allocated to inclusive school enrolment, poverty reduction measures, and the health and social services of children with disabilities and their families.
Canada can lead by example in building healthy, inclusive communities that promote the well-being of children with disabilities and their families. There are several ways to achieve this while promoting their human rights, including by addressing mental health and health promotion needs, engaging children and families in developing policies and programs, supporting research that produces meaningful results, building inclusive communities that promote accessible play and development opportunities, and collecting data across sectors.
Reviewed by:
Rafael Lenccia is an Associate Professor in the Department of Physiotherapy and Occupational Therapy and an Associate Member in the Faculty of Equity, Ethics and Policy at McGill University.
Mayada Elsabbagh is an associate professor of neurology and neurosurgery at the McGill University Neurological Institute, associate director for clinical research at the institute’s Azrieli Centre for Autism Research, and director of the Transforming Autism Care Consortium.
This article originally appeared on Policy Options and is republished here under a Creative Commons license.