In Canada, support for persons with disabilities is built on a binary switch. Either you can work or you cannot. However, life with episodic disabilities is not that black and white. Special requirements must be considered for people with episodic disabilities.
That was part of the opening statement by Member of Parliament David Yurdiga at a November 2018 meeting of the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities. Earlier in the year, the Conservative MP for Fort McMurray-Cold Lake had made a request for the committee to study the needs of people with episodic disabilities.
Episodic disabilities are long-term health conditions that are characterized by periods of good health interrupted by periods of poor health—periods that may vary in duration, severity and predictability. Examples include arthritis, Crohn’s and colitis, multiple sclerosis, HIV/AIDS, mental illness, as well as some forms of cancer and rare diseases.
Yurdiga’s motion asked the committee to recommend legislative and policy changes to ensure that the needs of people with episodic disabilities are addressed in government policies that support people with disabilities more broadly; that their rights are protected; and that they have equitable access to relevant programs. Over three days, the committee heard from 19 witnesses, including individuals with lived experience of episodic conditions, representatives of advocacy organizations and service providers, as well as researchers.
Two senior scientists from the Institute for Work & Health (IWH) were among the latter group asked to give expert testimony. Dr. Monique Gignac, scientific co-director at the Institute, drew on her two decades of experience conducting research on work disability among people with arthritis, diabetes and other chronic conditions, including a project she’s leading on accommodating and communicating about episodic disabilities. Dr. Emile Tompa shared his expertise as director of the Centre for Research on Work Disability Policy, where he worked on the development of a CSA Group standard on work disability management systems and a strategy on disability and work in Canada. Their contribution to the proceedings is an example of how research can support policy-makers in addressing important societal issues—in this case, the challenges and barriers faced by Canadians living with episodic conditions.
People with episodic disabilities want to remain productive and active participants in the labour market, and they need more flexible income supports to avoid income insecurity, the committee heard. Focusing their remarks on workforce participation, Gignac and Tompa spoke of the valuable role supportive employers can play in helping workers with episodic disabilities keep their jobs and earnings. However, due to stigma and workers’ privacy concerns, workers are often reluctant to ask for supports.
As a result, few employers are aware of the challenges faced by workers with episodic conditions. All too often, disability is managed as a performance or disciplinary issue instead of a health-related challenge that can be accommodated, noted Gignac. Speaking more broadly of the interaction between work participation and access to income support programs, Tompa also spoke of needed changes to such programs so that people with episodic disabilities can leave and re-enter the labour force as their work capacity fluctuates.
The standing committee made 11 recommendations in its final report, citing Gignac and Tompa nine times. The report, published in March and entitled Taking Action: Improving the Lives of Canadians Living with Episodic Disabilities, was warmly received by the Honourable Carla Qualtrough, Minister of Public Services and Procurement and Accessibility.
These recommendations will help inform future government policy and programs as we work to support the economic and social inclusion of persons with disabilities, including episodic disabilities, she wrote in the government’s response in July.
This column is based on an IWH impact case study, published in November 2019, available at: www.iwh.on.ca/impact-case-studies.