Being disabled is a probable outcome for every citizen along their life. The more we are able to tackle acute health conditions, surviving threats from infections, cancers and accidents, the more we will be living longer lives, with a variety of chronic health conditions having diverse abilities and constraints of our functioning (Allotey et al., 2010). Being or becoming disabled is therefore a reality for a significant number of us. Indeed, recognizing this reality, people with longterm disabilities sometimes refer to the rest of us as the ‘temporarily able-bodied’!
Historically, supports for disabled people were delivered through charity, addressing the needs of war victims (Les Invalides = the “unworthy”). From those early times also stems the association that disabilities are bodily impairments (e.g. amputees) and visible.
Modern concepts of disability expand this vision by defining disability as a dynamic interaction between a person with a health condition and their contextual factors. It is important to see each person in their specific situation; often this means that there are many more elements to consider than simply the main physical, emotional or cognitive impairment defining their diagnosis. There is always more than a single story!
This expansion of perspective also changes how we identify the needs of disabled people. It requires a broad and holistic approach, combining relevant health, social and environmental information. The need cannot be determined simply by establishing a diagnosis and determining a “degree of disability” according to a standardized table with percentage values, depending on the organ that is damaged or has lost its function. The definition of needs goes beyond the diagnosis and requires a standardized and fair assessment by professionals with expertise in disability matters. Often, we see a cumulation of needs that require substantially more supports in individuals considered only “mildly” impaired as judged by an external assessor.
Currently, we have in Canada one national assessment for needs, which is the Disability Tax Credit Form.
This is filled out by a health professional and then reviewed by administrative staff at the CRA who decide in favor or decline the application. While it is still necessary to indicate the underlying health conditions, this form has been developed to meet modern definitions of disability and inquires about the needs of support in different life domains. As the disability tax credit only benefits those who have taxes to pay, often disabled people or their caregivers need to apply for additional supports at a provincial and/or municipal level and at different charity organizations (e.g. Easter Seals). Children who need supports at school need to apply to their school-boards and the resources available might vary not only from school-board to school-board but even between schools within the same school-board. The administrative burden to navigate all those applications is significant and families often require the assistance of a social worker for this process. While these supports are mostly financial and very helpful, the biggest challenge in my work with children experiencing neurodevelopmental disabilities is not being able to offer them adequate supports, services and therapies after identifying their needs. After a waitlist to be seen by a developmental pediatrician, children enter new waitlists for therapies, for assistive devices, for respite, for accessible housing, for educational assistants, for additional professional assessments. Years go by without any supports — years during which vital developmental processes should be happening, but may be delayed or missed entirely.
One group has been extremely effective in identifiying these gaps and voicing their concerns with advocates, lobbyists and policy makers (50K is not OK). Their pledge is not different from all the other conditions I see in my practice: they want “…to receive direct, timely and ongoing access to financial support, treatment and services.”
The federal government has recognized that “Whereas there is no coordinated national strategy that would expand the scope of support to ensure consistency and long-term solutions, especially for persons over the age of 18 years” such a strategy has been decided. This is great news! But only for those Canadians with a diagnosis of Autism Spectrum Disorder.
Nothing will change for people with Down syndrome, Fragile-X syndrome, Cerebral Palsy, Fetal Alcohol Spectrum Disorder or any other neurodevelopmental conditions. My hope is that this recent acknowledgment of a need for a national strategy will be expanded to address the needs of the largest diverse segment of the population. Ethical principles of justice, equity and fairness demand nothing less than a comprehensive inclusionary policy rather than one that privileges one ‘special’ population.
Developing such a strategy in the 21st century requires a reframing of how we value disability in our society. It requires moving away from a charitable mindset to a rights-based framework. It means moving away from a biomedical model of health to a modern biopsychosocial model. It means being inclusive of all diversity.
None of this is being achieved with the recent federal framework on Autism Spectrum Disorder. Focusing on one biomedical label, it ignores all the Canadians experiencing disability-related inequities. It is like developing a strategy to eliminate potholes — but only on the fast lane!
Autism Spectrum Disorder is by definition extremely variable in its presentation ranging from people requiring complete assistance in all activities of daily living to people living fully independently. It is not uncommon to identify similar needs among people with diverse neurodevelopmental conditions. If we continue to channel supports according to diagnostic labels (e.g. the Ontario Autism Program) it is very unlikely that their distribution will be equitable. The federal framework on Autism Spectrum Disorders is a roadmap to discrimination, inequity and exclusion. This policy requires a serious discussion and consideration about the ethical lenses by which we view disability. No citizen should be dreading the potential of having a child with an impairment or becoming incapacitated during their life course. Nor should parents be put in the surreal situation of “hoping” for a diagnosis of Autism to qualify for a service while others are disappointed if their child receives the “wrong” label as I have witnessed in my practice.
The way forward is a National Disability Strategy. Hopefully, the current framework for autism spectrum disorders will be the initial spark for such an all-encompassing nationwide conversation and effort towards a more inclusive society. An inspiration can be found in Europe: In 2021, the European commission presented a transnational strategy called “Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030”.
