At some point in our lives, many of us will experience disability, whether through illness, injury or the natural process of aging.
Advances in medical science have allowed us to live longer lives, but this often means dealing with chronic health conditions that affect our ability to function and participate fully in society, making it more likely we’ll all experience some form of disability.
Given this reality, it’s in the best interest of all Canadians to support the creation of a comprehensive national disability strategy. Such a strategy would aim to make life fairer, more equitable and more inclusive for people with disabilities, addressing their diverse needs.
Narrow views of disability
Historically, support for disabled people came from charitable organizations, often focusing on war victims with visible injuries. In Napoleonic France, wounded soldiers were called les invalides, indicating the low value they had in society. This also led to a narrow view of disability as restricted to obvious physical impairments.
However, modern perspectives define disability as a dynamic interaction between a person’s health condition and their environment.
This perspective is based on the adoption of the biopsychosocial model of health. It defines disability as the result of the interaction of a person with a health condition and their context (social, physical and attitudinal), while in the traditional medical model, disability is defined only by the medical diagnosis/impairment. In the biopsychosocial model, social, physical and attitudinal barriers to participation can be as disabling as the impairments.
Recognizing the complexities of each individual’s situation is crucial. Disabilities can involve physical, emotional or cognitive impairments. Addressing these needs requires a holistic approach that considers health, social and environmental factors. There is always more than one single story, and the disability is more than a diagnostic label.
Disability in Canada
In Canada, the primary national assessment for disability support is the Disability Tax Credit Form, which is completed by a health professional and reviewed by the Canada Revenue Agency.
While this form helps identify patients’ support needs, it is limited in scope and benefits only those who pay taxes. Requiring a health professional to fill it out and sign it creates another barrier for many disabled people or their caregivers.
People with disabilities must often rely on additional support systems at provincial, municipal and charitable levels, which can be overwhelming to navigate.
Parents of children who need supports at school are required to apply to their school boards, where available resources might vary considerably, not only between boards but also between schools in the same board.
The burden of navigating all those applications is significant, and families often require the assistance of a social worker to help them manage the administrative load.
While the available supports are mostly financial and generally helpful, they often fall short. The biggest challenge in my work with children experiencing neurodevelopmental disabilities is not being able to offer them adequate support, services and therapies after identifying their needs.
Often after waiting months or years to see a developmental pediatrician to obtain a diagnosis, children and their families enter new waitlists: for therapies, assistive devices, respite care, accessible housing, educational assistants and additional professional assessments, each of them with their own application process and eligibility criteria.
Years can go by without any supports at all — years during which vital developmental processes should be happening, but which may be delayed or missed entirely. In Ontario, families have to wait up to three years to see a developmental pediatrician and then again years for services.
Advocacy and inclusion
Advocacy groups, particularly those supporting individuals with autism, have been successful in highlighting these gaps and pushing for better access to financial support and services. The federal government’s recent commitment to a national autism strategy is a positive step, but it does not address the needs of people with other neurodevelopmental conditions such as Down syndrome, fragile-X syndrome, cerebral palsy, fetal alcohol spectrum disorder and others.
A truly inclusive national disability strategy must go beyond catering to specific groups. It should uphold ethical principles of justice, equity and fairness, ensuring ALL people living with disabilities receive the support they need.
This requires shifting from a charitable mindset to a rights-based approach and adopting a modern biopsychosocial model of health as proposed by the WHO with the International Classification of Functioning, Disability and Health instead of an outdated medical model.
Developing strategies and policies that are inclusive of all forms of diversity and abilities will help all Canadians to live in a non-disabling society.
Olaf Kraus de Camargo receives funding from CIHR.
This article was originally published on The Conversation. Read the original article.
