The concept of disability has evolved significantly over the past three decades. Thirty years ago, when Statistics Canada started to collect data on disability with the 1983 Canadian Health and Disability Survey, the concept of disability was grounded in the medical model. Since that time, there has been a profound paradigm shift, which is best described by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).[1] The UNCRPD does not define disability solely according to an underlying medical condition or impairment. It also focuses upon the environment and how it contributes to people with disabilities being excluded from fully participating in society. Persons with disabilities include those who have long‑term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.[2]

Between 2010 and 2012, Statistics Canada, working with researchers at ESDC, developed new Disability Screening Questions (DSQ). The DSQ are based on the social model of disability and define disability as the relationship between body function and structure, daily activities and social participation, while recognizing the role of environmental factors. In keeping with this framework, the Canadian Survey on Disability (CSD) targets respondents, through the DSQ, who not only have a difficulty or an impairment due to a long-term condition or health problem, but who also experience a limitation in their daily activities.

The CSD definition of disability includes anyone who reported being "sometimes," "often" or "always" limited in their daily activities due to a long-term condition or health problem, as well as anyone who reported being "rarely" limited if they were also unable to do certain tasks or could only do them with a lot of difficulty. While the new DSQ and subsequent CSD advanced understanding of the population of persons with disabilities in Canada, in 2012 it did not contain questions that specifically addressed episodic disability.

MEASURING EPISODIC DISABILITY

Before 2017, the methodology used to estimate the prevalence of episodic disability within the larger disability population used a combination of CSD questions related to underlying condition and people reporting that their disability sometimes would limit the type and amount of activities they could do. Table A1 lists the underlying conditions in the CSD that could result in episodic disability. These estimates included individuals who indicated that they had: a mental health condition that limited their activities “sometimes” or “often”, and/or pain that limited their activities “sometimes” or “often.”[3]

While making the best use of the available data, this approach had limitations in identifying the episodic disability population. In addition to being overly broad, not enough emphasis was placed on understanding the interaction among the underlying health condition or impairment, the individual’s environment and the individual’s experience of disability.

Table A1—Episodic Conditions

Source:  Figure prepared by the author using custom tables from the 2012 Canadian Survey on Disability prepared by Adele Furrie et. al. in Episodic Disabilities in Canada, 2016.

Data from 2012 estimates that over 1.8 million working-age Canadians reported one or more of the twenty-one conditions and diseases that can result in episodic disability.[4] This represents well over half of the 2.3 million working-age Canadians living with a disability.[5] This methodology estimates that the working-age population with disabilities that does not experience disability as episodic is a minority. (See figure: A1)

Figure A1—Working-Age Population with Disabilities - 2012

Source:  Figure prepared by the author using custom tables from the 2012 Canadian Survey on Disability prepared by Adele Furrie in Episodic Disabilities in Canada, 2016

2012 CSD estimates that, of the 1.8 million who report episodic disabilities, about one third (approximately 600,000 people) are able to work but their disability affects the types and amount of work they can do. Moreover, almost 500,000 people who have at least one condition or disease that can result in episodic disability report that they are completely prevented from working.[6]

In addition to 2012 CSD estimates being very large, they also do not seem to capture what members of the disability community have identified as the unique experience of people with episodic disabilities. Specifically, the experience of episodic disability includes periods of wellness that allow for work and other important daily activities but with the recognition that periods of wellness and disability are often unpredictable. This is an important distinction. Because disability income supports often require a person’s disability to be severe and prolonged and have no capacity for employment, people with episodic disabilities face a double whammy. Often, they are excluded from the workforce due to unpredictable and episodic experiences of disability and they are excluded from federal income supports which mandate that a disability be both severe and prolonged. The 2012 data is still inadequate to inform the development of policies and programs that could help people with episodic disabilities to stay attached to the workforce and receive income support during episodes of disability.

NEW MODULE OF EPISODIC DISABILITIES

For 2017 CSD survey, a new module was developed that asks questions specifically designed to capture the experience of episodic disability. After completing the DSQ module, respondents who report disability are asked specific questions related to episodic disability. The episodic disability screening questions are described below. This new methodology does not rely upon underlying medical condition or impairment and focuses more on how the individual describes their experiences and limitations in participating in daily activities.

Episodic Disabilities (EPD)

EPISODIC DISABILITIES (EPD)—Question identifier: EPD_R05

The next questions deal with changes that you may or may not be experiencing with the impact of your conditions over time. Consider the impact of all conditions or limitations that you have.

EPISODIC DISABILITIES (EPD)—Question identifier: EPD_Q05

Do you ever have periods of one month or more when you do not feel limited in your daily activities due to your overall condition?

• 1: Yes
• 2: No

EPISODIC DISABILITIES (EPD)—Question identifier: EPD_Q10

Is your ability to do your daily activities

• 1: getting better
• 2: getting worse
• 3: staying about the same
• 4: you are able to do more activities during some periods but fewer activities during other periods

EPISODIC DISABILITIES (EPD)—Question identifier: EPD_Q15

How much longer do you expect your limitations will last?

• 1: Less than 1 year
• 2: 1 year but less than 2 years
• 3: 2 years or more but not likely permanent
• 4: Most likely permanent
• 5: Unknown duration

Source:  Statistics Canada, Canadian Survey on Disability—2017.

Estimates of episodic disability from the 2017 survey are contained in the Overview section of the main body of this report.