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Well-being of children with disabilities calls for rights-based policies

As many as 850,000 children in Canada identify as having a disability. Despite this large number, the disproportionate effects that social determinants of health (such as income, education and social exclusion) have on the well-being of these children are often overlooked. Neglecting the effect of these factors when designing policies and programs for them may mean a higher risk of cardiovascular diseases, mental health challenges, decreased social participation, more use of the health-care system and an increased burden for caregivers.

COVID-19 increased these risks and heightened vulnerabilities because of the disruption of services and support for these children and their families. This underscores the future need for policymakers to prioritize the needs of these children and the context in which they live.

One way to do this is to adopt a human rights-based approach to policy design. This involves taking steps to enshrine human-rights language and protection into legal frameworks; designing programs that promote human rights by considering the specific rights of children and persons with disabilities; and implementing such legislation across jurisdictions. This also means developing mechanisms for individuals to access these rights and for quickly redressing violations.

The most effective way to accomplish this goal is to foster the participation of this population in all steps of policy design and implementation.

Persons with disabilities must be included as equal partners and leaders in programs (such as public consultations) to promote their participation in policymaking; in identifying policy targets where human rights are systematically violated; in assessing the impact of all policies on the human rights of marginalized groups; in reflecting human-rights language in policy text; and in allocating sufficient and sustained budgetary resources to evaluation and monitoring, data collection and accountability mechanisms.

A rights-based approach to policy has been advocated by the United Nations and organizations of persons with disabilities. As signatories to the UN Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child, Canada committed to a governance approach informed by human rights. This includes advancing policies and programs designed with equitable disability rights fulfilment in mind so all children can enjoy equal health and development opportunities.

Studies of diverse groups of children with disabilities before and during the pandemic shed light on existing gaps. Family and caregiver perspectives illustrated the challenges of distance learning (including inaccessible infrastructure and resources for online education, disrupted routines and mental-health strain); loss of medical and therapeutic services; loss of home support service; social isolation and delayed post-pandemic recovery.

COVID also exposed how children with disabilities were susceptible to poorer health outcomes before the pandemic. It also exacerbated issues such as mental health when new challenges led to increased behavioural dysregulation, sleep problems, and distress and anxiety that often persisted post-pandemic. Poor mental health was identified as one of the “top 10 threats for Canadian children,” yet an academic scan of pandemic policies found that few of them addressed mental health for children with disabilities and even fewer provided strategies and solutions.

Recommendations from consultations conducted by multiple organizations highlighted five priority areas for Canadian children. Using a rights-based view, the report recommends engaging children with disabilities in making decisions that impact their own health. To promote meaningful engagement, children with disabilities should be made aware of their rights and have opportunities to engage in consultation.

It is also important to allow active participation of everyone in policy development, accessibility and information sharing through the education and health systems. This should include ensuring compensation for the participants’ time and expertise – child care, providing child-friendly information before consultation, maintaining “safe spaces” for children to speak and participate, and accommodating language and accessibility needs.

Another priority highlighted was supporting intersectional issues such as children with disabilities with LGBTQIA+ identities, those experiencing homelessness or children facing institutional care or poverty. Research must seek out underrepresented perspectives of families considered “hard to reach,” such as fathers, parents of children who identify as LGBTQIA+, low-income and racialized people, immigrants and newcomers to Canada, as well as Indigenous children with disabilities.

Parliamentary and Senate committee initiatives addressing the rights of children with disabilities have shown increased interest in areas related to childhood disability, particularly in the areas of accessibility, child health and early education.

However, child-centric and disability-inclusive considerations across jurisdictions are still needed. Research and public consultations are ongoing through the national autism strategy and the Accessible Canada Act to develop standards for accessibility. These policies can support several aspects of community living, health and inclusion of children with disabilities if the appropriate lenses are in place.

However, while the national autism strategy engages families and caregivers, the proposed roadmap for implementation of the Accessible Canada Act makes little reference to children and youth. Considerations of the unique accessibility needs of children with disabilities in areas of federal jurisdiction could set an example for childhood disability considerations across all jurisdictions.

For example, efforts to promote accessibility should also include the creation of inclusive communities, including school, health settings and play spaces along with transportation. Availability of play spaces is a key predictor for healthy physical and mental development for children. Physical activity that is done naturally can help prevent physical decline as children grow and is essential for their overall development.

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Yet, play spaces are often inaccessible for all children with different disabilities. Lack of accessible changing stations, play equipment, drinking fountains and active transportation options are still a concern. Access to information is also a barrier. The Jooay app, available across Canada, is a resource that provides information about inclusive leisure and accessible play opportunities.

Comprehensive and accessible data that target the needs of children with disabilities is also important. As far back as 2017, the UN 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 inequities across groups.

A consistent and comprehensive data-collection strategy helps set clear priorities and benchmarks. It should include inclusive school enrolment, poverty-reduction measures and funds allocated for the health and social care of children with disabilities and their families.

Canada can lead by example in the creation of healthy and inclusive communities that promote the well-being of children with disabilities and their families. There are several ways to accomplish this while promoting their human rights – addressing their needs for mental health and health promotion; including children and families in the creation of policies and programs; supporting research that informs meaningful outcomes; creating inclusive communities that facilitate accessible play and growth opportunities; and collecting data across sectors.

Reviewing contributors:

Raphael Lencucha is an associate professor in the school of physical and occupational therapy, and an associate member of the department of equity, ethics and policy at McGill University.

Mayada Elsabbagh is an associate professor of neurology and neurosurgery at the Neuro Institute of McGill University, and serves as associate director of clinical research at the Neuro’s Azrieli Centre for Autism Research, as well as director of the Transforming Autism Care Consortium.

Ananya Chandra, Anna Katalifos and Keiko Shikako
Ananya Chandra, Anna Katalifos and Keiko Shikako
 
Ananya Chandra is a graduate student in rehabilitation sciences at McGill University’s school of physical and occupational therapy, and a research assistant at the Childhood Disability: Participation and Knowledge Translation Lab at McGill University.
Anna Katalifos is a graduate student in integrated neuroscience at McGill University’s Neuro Institute. She is also a research assistant at the Transforming Autism Care Consortium.
Keiko Shikako is the Canada Research Chair in Childhood Disability: Participation and Knowledge Translation Lab, an associate professor, and associate member of the department of equity, ethics and policy at McGill University.
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