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 29, 2018, meeting of the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA).
Earlier in the year, the Conservative MP for Fort McMurray—Cold Lake had made a request for the standing committee to study the needs of people with episodic disabilities. These 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. Yurdiga shared the experience of his wife Kathy, who was diagnosed with multiple sclerosis (MS) in 2004. “When individuals or their loved ones are diagnosed with MS, life can suddenly turn on a dime,” Yurdiga said as he tabled his private members’ motion in the house. “One day their body behaves normally and the next it refuses to listen.”
The 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 in late November and early December, the committee heard from 19 witnesses, including individuals with lived experience of episodic conditions, representatives of not-for-profit advocacy organizations and service providers, and researchers.
Two senior scientists from the Institute for Work & Health were among the witnesses in 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 an ongoing project on accommodating and communicating about episodic disabilities that she is leading. Dr. Emile Tompa shared his expertise as director of the Centre for Research on Work Disability Policy, where he has worked on the development of a new CSA Group standard on work disability management systems and a pan-Canadian 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.
Based on the testimony and submissions, the standing committee made 11 recommendations in its final report, which cited Gignac and Tompa nine times. Published in March, the report 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, who wrote the government’s response in July. “The Government of Canada has given consideration to the eleven recommendations developed by HUMA and presented in its report. 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,” the response stated.
Two themes emerged
The committee heard that over 1.6 million people between the ages of 25 and 64 reported having an episodic disability, according to the 2017 Canadian Survey on Disability. Besides MS, examples of episodic conditions and diseases include arthritis, Crohn’s and colitis, HIV/AIDS, mental illness, as well as some forms of cancer and rare diseases.
Two themes emerged over the three days of testimony: 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. 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’ concerns about privacy, workers are often reluctant to ask for supports, relying instead on benefits and accommodations that are already available to all employees.
As a result, few employers are aware of the challenges faced by workers with episodic conditions. And 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 income support programs so that people with episodic disabilities can leave and re-enter the labour force as their work capacity fluctuates.
Gignac’s and Tompa’s comments were picked up by the committee in its final report, published in March. Three of the committee’s 11 recommendations focused on improving the work participation of people with episodic disabilities. The first recommendation referenced Gignac's comment about the federal public service's unique position to lead the way as a model employer. It called on Employment and Social Development Canada (ESDC) to work with other federal departments and agencies to develop an episodic disability awareness and accommodation module as part of the accessibility strategy for the public service.
The committee also called on ESDC to:
- establish a dedicated funding stream for organizations to develop targeted employment supports for both workers and employers; and
- in collaboration with people with episodic disabilities and the organizations that serve them, study a range of incentives for employers that could offset costs associated with accommodating employees with episodic disabilities.
The committee’s final recommendation touched on coordinating application processes to help people with episodic disabilities access the range of programs that would help them stay at work and provide income replacement during periods when they are unable to work. Citing Tompa, the committee noted that a “single window” or “Service Canada” approach to providing supports could be considered as government departments in both federal and provincial/territorial governments review the system of income supports. Furthermore, non-income benefits such as prescription drugs, housing subsidies and vision care should continue during periods when earned income replaces income supports.
The final report of the standing committee and the government’s response, as well as the transcripts of the presentations by Gignac, Tompa and the other witnesses, are available at: https://www.ourcommons.ca/DocumentViewer/en/42-1/HUMA/report-15