The INDEED (INvestigating the DEvelopment of Accessibility Standards in Canada and the Inclusion/Exclusion of Episodic Disabilities) research project looks at how people with episodic disabilities are often left out of workplace accessibility rules. It’s an important time to do this, because Canada is reviewing its employment accessibility standards.
Episodic disabilities are long-term health conditions that come and go. People may feel well for a while, then have times when they are unwell or unable to work.
To better understand how these conditions are included in workplace rules, we looked at employment accessibility standards across Canada. We also talked to 25 people with lived experience in five focus groups, and interviewed four experts from the disability community.
This study will help create better, fairer rules. By listening to people with these health conditions, we hope to make workplace standards more supportive and inclusive.
Download the INDEED plain language executive summary: https://www.realizecanada.org/wp-content/uploads/Executive-Summary-_INDEED-FINAL_EN_plain-language-16Jul2025.docx
Download the INDEED Summary Findings Report: https://www.realizecanada.org/wp-content/uploads/INDEED-Summary-of-Findings-Report-FINAL_EN_-18Jul2025.docx
Key Findings
1. Understanding Episodic Disability: People shared that these conditions are often invisible and change from day to day. They said symptoms, how they feel about themselves, and their ability to work often vary. This made it hard to ask for help or feel supported at work.
2. Awareness and Misconceptions: Many participants said their bosses and coworkers don’t understand episodic disabilities. Because the disabilities can’t always be seen, people often don’t believe them. Those who also faced racism, poverty, or sexism had an even harder time.
3. Employment Accessibility Experiences: Some people said it was hard to get support or accommodations at work. A few had good experiences, usually in government or union jobs. Others said that telling their employer about their disability sometimes led to losing their job or being passed over for promotions.
4. Policy and System Gaps: The research and experiences of people in this project described that laws and rules about accessibility don’t often include episodic disabilities. Most focus on visible or permanent disabilities. This leaves out people with changing health needs.
5. What Works: Accommodations and Advocacy: People we talked to in this project said they had better results when jobs were flexible — offering part-time work, remote options, or understanding HR teams. Some started their own businesses. Peer support from others with lived experience also helped.
Recommendations
1. Add Episodic Disability to the Law: Clearly define episodic disability in both federal and provincial accessibility rules.
2. Include People with Lived Experience: Work with people who have episodic disabilities when making policies. Set up advisory groups led by them.
3. Support Inclusive Workplaces: Train managers and HR teams to understand episodic disabilities. Make sure workplace accommodations are followed through.
4. Teach the Public: Run campaigns to help everyone learn about episodic disabilities.
5. Help Small Businesses: Give tools and examples to small businesses so they can support workers with episodic disabilities.
6. Reduce Barriers and Support People: Make it easier to get help without proving a disability over and over — especially for people without steady jobs or healthcare.
Next Steps and Future Directions
In the future, we want to include more people and organizations from French-speaking communities. We also want to hear from workers in jobs that weren’t part of our earlier discussions.
Acknowledgements
We would like to thank everyone who participated in the INDEED focus groups and key informant interviews and made it possible to carry out this research study. Thank you as well to the members of the Project Advisory Committee for their commitment to, and support of, this project.
We acknowledge the financial support of Accessibility Standards Canada.