Increasing numbers of people in Canada (over 2 million people in a recent estimate) live with ongoing episodic disabilities. These include disabilities related to long-COVID, multiple sclerosis, lupus, arthritis, cancer, HIV, diabetes, and mental health conditions, amongst others.
Episodic disabilities are chronic health conditions characterized by fluctuating periods and degrees of illness and wellness. These periods can be unpredictable in duration, types of symptoms and frequency of recurrence.
For example, a person who is living with rheumatoid arthritis or depression might be well for several months, and then experience several episodes of illness in a row. Each episode may be different in terms of the symptoms experienced, how long it lasts and how intense the symptoms are.
The unpredictable nature of episodic disabilities can lead to many challenges for people living with these conditions. It can have a negative impact on meaningful community participation, employment, income security, social inclusion, and access to care.
Find out more about the challenges of living with an episodic disability.
Realize is a national charitable organization that was founded to address the rehabilitation needs of people living with HIV. Some of the challenges people living with HIV face are related to the episodic nature of their conditions – challenges that are also common to people living with other episodic conditions. That is why an important part of our work now focuses on episodic disabilities more broadly and why we collaborate with a wide range of organizations working to support people with other health conditions. Together we are stronger and have a greater capacity to effect change.
For instance, people living with episodic disabilities face significant employment and income support issues. Recurring, unpredictable periods of ill health make it difficult to work, especially full-time. Most people with episodic disabilities must rely on health and disability support programs. And due to the strict definitions and policies that govern these programs, many people are not able to participate in the workforce part-time or when their health allows.
Realize is a leader in research and advocacy addressing the range of complex barriers to inclusion that people living with episodic disabilities experience.
Realize is the convening organization for the Episodic Disabilities Forum — a pan-Canadian forum comprised of people with living experience, national disability organizations, federal policymakers, and researchers. Collectively we identify relevant evidence and policy initiatives and disseminate information to raise awareness of episodic disabilities, and to promote the inclusion of people in Canada who live with episodic disabilities.
Episodic Disabilities Resources
The Pandemic Pandora’s Box: Long COVID and Episodic Disability
Project Report; Realize 2021
Executive Summary
The Pandemic Pandora’s Box report analyzes the combined findings of two informal, community-driven surveys shared openly online in February 2021. The first asked adults working or seeking work in Canada about their experiences with Long COVID, while the second asked Canadian employers about their comfort level and preparedness to provide workplace accommodations to COVID-19 long-haulers. Up to 1 in 3 people who contract COVID-19 – regardless of the severity of their acute infection – risk facing Long COVID. Long COVID refers to a multitude of fluctuating, debilitating symptoms that may affect all organ systems and for many cause impairments which last for months.
Recommendations for Employers, Insurers, Human Resource Personnel and Rehabilitation Professionals on Return to Work for People Living with Long COVID
This is a living document that is continually updated based on emerging evidence in the
field. The reference list provides scientific support to statements within the document and
hyperlinks provide an enriched understanding of concepts that will reach the broader public.
A Report on the 2022 Survey of Certified Human Resources Professionals Regarding Episodic Disabilities
This report, and its predecessors in 2020 and 2006, was developed as part of an ongoing
assessment of the existing knowledge of Human Resources (HR) professionals across Canada about Episodic Disability in the workplace; and the gaps in both training and experience that may be barriers to a culture of accommodation in their work environments. Human Resources professionals across sectors are uniquely positioned to both advocate for employees, and to engage leadership to provide appropriate support to their team members living with Episodic Disability. HR professionals play a pivotal role in ensuring that people living with episodic disabilities are recruited, retained, or are able to return to the workplace should they require time away.
The 2022 Episodic Disability Survey for Human Resources professionals (Appendix 1-2), was
designed to gather input on experiences of episodic disability in the workplace, as well as on
activities and tools, that support Human Resource Professionals. This information will assist in
building awareness and will help inform the creation of a National Action Plan on Episodic
Disability and Employment.