Canadian Survey on Disability, 2017: Concepts and Methods Guide
2. Survey content: Themes, concepts and questions

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The Canadian Survey on Disability (CSD) involves a comprehensive set of modules designed to provide a detailed portrait of persons aged 15 years and over with disabilities in Canada. The survey begins with a set of questions designed to identify respondents with a disability, their disability type and level of severity. Respondents who were identified as having one or more disabilities received subsequent modules, which included many indicators of social and economic participation as well as the types of supports and barriers encountered in the social and physical environment. New areas of survey content were added for the 2017 CSD to address emerging data needs, such as the use of various therapies and social service supports, modes of accessing government services, Internet use and data on veterans of the Canadian Armed Forces with disabilities. New content was implemented following consultation and testing protocols. A complete flow chart of the 2017 CSD questionnaire modules is presented in Appendix A.

2.1 Disability Screening Questions (DSQ)

The first component of the CSD is a questionnaire module called the Disability Screening Questions (DSQ). The DSQ involve a rigorous set of questions which are used to identify respondents with a disability. They identify ten distinct disability types and allow for the computation of a severity score for each disability type, as well as an overall severity score. The DSQ form the basis for calculating rates of disability across Canada among persons aged 15 years and over.

The DSQ were originally developed as part of Employment and Social Development Canada’s (ESDC) New Disability Data Strategy of 2010. At that time efforts were initiated to create a new comprehensive instrument for the identification of persons with disabilities which moved more fully towards the social model of disability and improved the coverage of the full range of disability types. The DSQ were developed over a two-year period from 2010 to 2012. The questions were drafted following an extensive review of existing disability indicators used in Canada and internationally. Development involved several rounds of qualitative testing conducted to ensure the validity of each question. This was followed by two major quantitative tests, one with the Labour Force Survey and the other with the Canadian Community Health Survey, to assess the reliability of the DSQ on surveys with very different contexts. These tests established the reliability and the validity of the DSQ as an instrument for estimating the prevalence of disability in the adult population.Note For a full discussion of the development of this measure, see Grondin (2016).

The DSQ were first used on the 2012 CSD. For the 2017 CSD, most questions remained unchanged. The only significant change to the DSQ for 2017 involved the addition of questions for each disability type related to the age at which the difficulty or condition began (onset) and the age at which activity limitations began. Otherwise, the DSQ were only slightly modified, primarily to adapt to an Internet-based questionnaire environment, reflecting new data collection methods used in 2017 (see Chapter 4 for details on data collection). Qualitative testing of all changes to the 2017 CSD questionnaire was conducted across the country, in both English and French, in 2015 and 2016. The full setNote of questions for the 2017 DSQ module as well as all CSD modules can be viewed on the Statistics Canada website.

2.2 Identifying persons with a disability: Ten disability types

The DSQ follow the social model of disability and require that a limitation in daily activities be reported for the identification of a disability—the presence of a difficulty alone is not sufficient. To identify persons with a disability, the DSQ first measure the degree to which difficulties are experienced across various domains of functioning and then ask how often daily activities are limited by these difficulties. Only persons who report a limitation in their day-to-day activities are identified as having a disability.

The DSQ use screener questions to comprehensively identify ten distinct disability types and to quantify the severity level of each type. Screening questions emphasize consistency of measurement across the disability types, including the presence of a long-term condition or health-problem lasting or expected to last six months or more.

The DSQ cover the following ten disability types:Note

  1. Seeing
  2. Hearing
  3. Mobility
  4. Flexibility
  5. Dexterity
  6. Pain-related
  7. Learning
  8. Developmental
  9. Mental health-related
  10. Memory

The DSQ also contain a question concerning any other health problem or condition that has lasted or is expected to last for six months or more. This question is meant to be a catch-all in case the 10 disability types did not cover the respondent’s situation. This question is associated with an 11th “unknown” disability type. That is, when respondents reported this other limitation but did not report any of the 10 disability types already captured by the DSQ, they were identified as having an “unknown” disability. Where there was both a limitation under one of the 10 known types and an “other” limitation, the latter was ignored.Note

Operational definition of a disability for the CSD

For each of the 10 disability types, the DSQ always have at least one question on the associated level of difficulty (“No difficulty”, “Some difficulty”, “A lot of difficulty”, or “Cannot do”) and a question on the frequency of the limitation of daily activities (“Never”, “Rarely”, “Sometimes”, “Often”, or “Always”). To meet the definition of a disability for a particular type, the frequency for the corresponding limitation in daily activities must be “Sometimes”, “Often” or “Always” or, for persons who report being “Rarely” limited, it must be combined with a difficulty level of “A lot of difficulty” or “Cannot do”.

Table 2.1 below summarizes the combination of answers to the DSQ that are generally used to identify a disability. This approach applies to the majority of disability types measured on the DSQ. 


Table 2.1
Combination of answers on the Disability Screening Questions that were used to identify a disability
Table summary
This table displays the results of Combination of answers on the Disability Screening Questions that were used to identify a disability. The information is grouped by How much difficulty do you have...? (appearing as row headers), How often are your daily activities limited by...? (appearing as column headers).
How much difficulty do you have...? How often are your daily activities limited by...?
Never Rarely Sometimes Often Always
No difficulty No disability No disability Disability Disability Disability
Some difficulty No disability No disability Disability Disability Disability
A lot of difficulty No disability Disability Disability Disability Disability
Cannot do at all No disability Disability Disability Disability Disability

It should be noted that in some situations, these criteria were modified. In particular, a person who reports having a developmental disorder is identified as disabled if the respondent has been diagnosed with this condition, regardless of the level of difficulty or the frequency of the activity limitation reported.

Another noteworthy exception is the “unknown” type, where the level of difficulty is not asked. A person will be identified with an “unknown” disability only if he or she reports being limited in terms of daily activities “sometimes”, “often” or “always” because of another health problem or condition not previously identified and if he or she has not reported any limitation under the 10 previous disability types.

Lastly, for disabilities involving seeing, hearing, mobility, flexibility and dexterity, which are measured with task-based questions, a response of “no difficulty” results in skipping the follow-up question on daily activity limitations. Thus, all “no difficulty” responses for these disability types are classified as “no disability”.

For full details on the specific questions and classification used for each disability type, see Appendix B.

2.3 Calculating disability rates in Canada

One of the primary objectives of the 2017 CSD is to produce disability rates among adults in Canada. These can be calculated by province and territory, for example, or by age group. Disability rates are calculated with the following formula:

(Persons with a disability / (Persons with a disability + Persons without a disability)) x 100

In order to provide such statistics, the methodology of the CSD required not only identifying persons with a disability but also producing estimates of the number of persons without a disability in Canada. Thus, the CSD drew two distinct samples of persons from the 2016 Census of Population:

  1. Those who were filtered in by the census question on Activities of Daily Living (called the YES sample) and who would proceed through the DSQ in the CSD to determine if they have a disability, and
  2. Those who were filtered out by the census question on Activities of Daily Living (called the NO sample) and who were automatically considered persons without a disability.

Details about these methods are provided in Chapter 3 of this guide.

2.4 Measuring the severity of disabilities

Usefulness of a severity scoreNote

It is clear from previous research using the 2012 Canadian Survey on Disability that disability severity is a strong predictor of the reduced participation of people with disabilities, particularly in the domain of economic activity (Till et al., 2015; Arim, 2015; Turcotte, 2014). People with severe or very severe disabilities are less likely to participate in the labour force, for example, or to hold a university degree. Those with severe or very severe disabilities are also more likely to be in need of supports and services, such as aids, devices, caregiving, specialized public transportation and income supports.

The inclusion of disability severity is thus an important consideration in analyses of the participation of people with disabilities. The ready-to-use and consistent disability severity score and severity classes included in the CSD data files enable analysts to develop more accurate inferences about the situation currently faced by persons with disabilities. Researchers involved in disability policy can also use these important analytical variables for developing policies and programs to help persons with disabilities.

The Severity Score

The severity score developed using the Disability Screening Questions (DSQ) reflects the social model of disability. In addition to taking a person’s level of functional difficulty into account, this model also considers their subjective assessment of the impact of these difficulties on their daily activities.

For each of the 10 disability types,Note a score is assigned using a scoring grid that takes into account both the intensity of the difficulties (no difficulty, some difficulty, a lot of difficulty, or cannot do) and the frequency of the activity limitations (never, rarely, sometimes, often, or always). If a person does not have a particular type of disability, a value of zero is assigned to the score for that disability type; in cases where a particular type of disability is identified, the score for that disability type increases with the level of difficulty and the frequency of the limitation.

A global severity score is then derived based on the scores calculated for all disability types. A person’s global severity score is calculated by taking the average of the scores for the 10 disability typesNote (i.e., the 10 scores are summed and divided by 10). Consequently, the more types of disability a person has, the higher his or her global score will be.

Severity classes

To make the severity score for each disability type easier to use, severity classes were established for each disability type.

The following severity classes apply to the score for each disability type:

Four severity classes have been established for the global score that takes the 10 disability types into account:

It is important to understand that the name assigned to each class is simply intended to facilitate its use. It is not a label or judgement concerning the person’s level of disability. In other words, the classes should be interpreted as follows: people in class 1 have a less severe disability than people in class 2; people in class 2 have a less severe disability than people in class 3; and people in class 3 have a less severe disability than people in class 4.

The breakdown of persons with a disability across the four severity classes (based on global score, taking into account all disability types) is shown in the table below.


Table 2.2
Distribution of persons with a disability, by severity class, Canada
Table summary
This table displays the results of Distribution of persons with a disability. The information is grouped by Severity class (appearing as row headers), Persons with a disability
, calculated using number and percent units of measure (appearing as column headers).
Severity class Persons with a disability
number percent
Class 1 = mild 2,324,430 37.2
Class 2 = moderate 1,242,910 19.9
Class 3 = severe 1,295,660 20.7
Class 4 = very severe 1,383,630 22.2

For additional information on the methods used to derive severity scores and severity classes, see Appendix C.

2.5 Creating a portrait of Canadian adults with disabilities

In addition to the DSQ, which identify disability types and severity, a further set of 45 questionnaire modules were developed for the more comprehensive Canadian Survey on Disability (CSD). The overall content of the 2017 CSD represents hundreds of indicators across many spheres of functioning and participation, allowing for an in-depth picture of the issues affecting Canadian adults with disabilities (see detailed description of survey indicators in Appendix D).

The survey included the following broad themes:

Disability characteristics

Survey measures included a range of important questions related to characteristics of basic functioning and impairment, including the age at which the difficulty or condition began (onset) and the age at which activity limitations began for each disability type and the main underlying medical conditions.

Supports and barriers

Other priority measures for 2017 involved the types of supports that persons with disabilities are using to overcome their functional challenges. An extensive set of questions was asked about aids and assistive devices, medications and support services for daily living. New for 2017 were questions on the use of various therapies and social service supports, modes of accessing government services and Internet use in general. Gaps in support and the specific types of barriers encountered in trying to get needed help were also captured on the survey, including the situation of being housebound. Other indicators included financial supports through various sources of personal income, including disability-related income sources such as Canada Pension Plan (CPP) and Quebec Pension Plan (QPP) Disability benefits and private or employment-related disability insurance plans.

Education

Representing core data needs were questions on the educational experiences of adults with disabilities. Education indicators included current school attendance, highest level of schooling achieved and major field of study. Detailed questions also examined requirements for accommodations at school, unmet needs and other barriers encountered while acquiring an education, including additional expenses, extra completion time needed and any experiences of social exclusion or bullying.

Employment

In relation to employment as a core theme for the survey, many labour force participation details were measured, such as industry, occupation and hours of work, experiences of unemployment or being completely prevented from working and retirement details. Several new employment-related indicators were added for 2017, such as job search methods, labour mobility and reasons for self-employment. Survey indicators also examined the barriers faced by persons with disabilities in relation to employment, accommodations needed, unmet needs and labour force discrimination that may have been encountered.

In addition, veterans of the Canadian Armed Forces with disabilities were identified for the first time on the CSD, allowing a portrait of disability among the men and women who have provided Canadian military service. 

The CSD also serves as a benchmark on issues of employment equity for persons with disabilities in Canada, as compared to the overall Canadian population. The survey allows for the identification of persons with a disability who meet the specific criteria in the 1995 Employment Equity Act. These criteria are outlined in Appendix E, along with the specific survey questions used to fulfill the Employment Equity definitional criteria.

More details on survey content are provided in sections 2.7 to 2.11 as well as in Appendices A to F. Section 8.6 provides a summary of the major changes to CSD content from the 2012 cycle to 2017.

2.6 Development and testing of thematic content

The development of thematic content for the 2017 CSD began with an in-depth review of 2012 CSD content. Detailed feedback was collected from CSD methodologists, analysts, research data centre users, survey developers and managers from both Statistics Canada and ESDC who had experience in working with the 2012 CSD. ESDC’s Persons with Disabilities Technical Advisory Group also provided input. Findings from this consultative process formed the basis for new content development for the 2017 survey as well as improvements to content areas carried forward from 2012.

Once 2017 priorities were established, survey indicators were drawn from a number of sources. The 2012 CSD was the primary source, as many questions continued to be relevant for disability research. Several standardized and well-established measures used on other Statistics Canada surveys were added to the questionnaire, including general health questions and labour force activity modules. This content was modified as needed for the CSD context. New areas of survey content for the 2017 CSD involved several original questions developed in consultation with specialized sources, including Veterans Affairs Canada and Service Canada. Canada Mortgage and Housing Corporation also provided valuable input. The specific source for each survey question is specified in the 2017 CSD Data Dictionary.

The CSD questionnaire was adapted to a new data collection system implemented for 2017. For the first time, questions in the 2017 CSD were designed for use in an Internet-based electronic questionnaire (EQ). Electronic questionnaires are designed as a set of user-friendly and accessible screens that can be navigated online. In terms of content, the EQ sometimes required minor adaptations in the question wording and format from their previous versions developed in a Computer-Assisted Telephone Interview (CATI) environment. For example, former interviewer instructions were converted to on-screen help text.

In order to evaluate the new electronic questionnaire for the CSD, a series of testing operations were undertaken over a 15-month period. This involved both content-focused assessments of question wording and flows as well as technical testing of the new EQ survey application. Initial qualitative pretesting of a draft paper questionnaire was conducted from November 2015 to January 2016. This involved 47 in-depth cognitive interviews in both English and French, in four locations across Canada. Results of testing led to recommendations for improvements to the wording of questions, instructions and response categories, as well as to the flow of the questionnaire. This led to the building and preliminary in-house testing of the EQ application, involving rigorous protocols for quality assurance. The next step involved the formal technical test of the EQ application, which took place in September of 2016 across three different cities. This test evaluated the functionality of the system through observations of respondents as they navigated through the survey screens and through cognitive interviews to analyze their experience with the application. Both the self-reporting format (rEQ) and the interviewer-led format (iEQ) were tested in both English and French. Results were positive overall, with some additional modifications required, mostly to skip pattern flows and some question wording. A final period of internal acceptance testing was conducted, involving modular and integrated testing of the survey. The final sign-off of the survey modules was completed in December 2016.

One final step was taken with respect to content development for the 2017 CSD: an in-depth review of 2016 Census variables for their potential analytical contribution to the CSD dataset through record linkage. Since the 2017 CSD drew its sample from the 2016 Census (see Chapter 3 for details), relevant information from the census could be combined with information provided during the 2017 CSD interview. This approach reduced the number of questions that needed to be asked on the CSD and provided for a richer portrait of persons with disabilities for CSD data users. These variables also allow users to compare persons with and without disabilities. Over 600 census variables covering 13 distinct subject matter areas were reviewed for potential linkage. Selection of the final census variables for linkage with the CSD (approximately 300) was based on extensive consultations with census subject matter specialists, disability policy researchers, CSD analysts, methodologists and client services experts.

2.7 Questionnaire modules

Listed below are the questionnaire modules found on the 2017 CSD. A full flow chart of the modules is presented in Appendix A and more detailed information about the survey indicators within each module is provided in Appendix D. The complete 2017 Canadian Survey on Disability questionnaire can be found on the Statistics Canada website.

The Canadian Survey on Disability — 2017

In addition to information on the questionnaire indicators in Appendix D, Appendix E lists the specific survey questions used to fulfill the Employment Equity Act definitional criteria, and Appendix F lists the extra question categories created during survey coding as well as the standard classifications used to create indicators for open-ended survey questions.

A comprehensive description of all the variables available from the survey data is provided in the 2017 CSD Data Dictionaries (codebooks). For details on how to obtain the data dictionaries, contact Statistics Canada Client Services or call 1-800-263-1136.

2.8 Derived variables

In order to facilitate more in-depth analysis of the rich CSD dataset, over 130 derived variables (DVs) were created by regrouping or combining answers from one or more questions on the questionnaire.

A wide array of DVs were developed to capture the core disability indicators arising from the CSD’s disability screening questions. These DVs included indicators of disability status and disability type, based on definitions used for the CSD (see section 2.2 for survey definitions of disability). DVs were also created to capture disability severity ratings and classes across disability types. In addition, the age of onset of each type of difficulty or condition, the age of limitation for each disability type, and the difference between these two ages for respondents were grouped into five-year age groups to facilitate use of these new data indicators.

Other DVs were created to facilitate use of the broad range of indicators for creating a portrait of adults with disabilities in Canada and their participation in society. These included DVs on the use of assistive devices, help needed with daily activities, needs for various health care therapies and social services, and areas of unmet needs for support with everyday activities. Several DVs reflected the coding of variables to standard classification systems at different levels of detail (official series and subseries levels). These included DVs for the International Classification of Diseases, the Classification of Instructional Programs, the North American Industry Classification System, and the National Occupational Classification. Other important educational and labour force concepts were also captured by DVs, such as school attendance status, labour force status, and full-time or part-time employment status. Finally, DVs on veterans of the Canadian Armed Forces were developed for users.

2.9 Linked content from the 2016 Census

The CSD draws its sample from 2016 Census respondents (see Chapter 3 for details). At the outset of the 2017 CSD interview, all respondents were told about the plans to link the CSD survey data with the information that they provided on the census. All linked information is kept confidential and used for statistical purposes only.

The specific benefits of a CSD-Census record linkage are reduced response burden for the target population of the CSD, access to useful information to adjust survey weights for non-response, which is crucial to providing valid estimates, and the creation of a comprehensive microdata file on persons with disabilities in Canada. Together, data from these two sources provide a detailed statistical portrait of persons with disabilities in Canada—data which are not available from any other source.

As explained in more detail in Chapter 3, the CSD also drew a sample of persons without a disability from the census to be added to the survey database. Census linkage thus allows data users to compare characteristics of persons with a disability and persons without a disability.

Approximately 300 census variables covering 15 distinct subject matter areas were selected and linked to the final CSD file for 2017, both for persons with a disability and for persons without a disability. These areas ranged from socio-cultural variables, family and household living arrangements, core housing needs, education, employment, income and special indicators of low income. Many new variables have been added to the linkage for this cycle as a result of expanded census linkage to income tax data,Note increasing the variables available to the CSD. The list below highlights some of the census variables that have been appended to the CSD analytical files.

It is important to note that these census variables refer to each respondent’s situation on the day of the 2016 Census, that is, as of May 10, 2016. Thus, for 2017 CSD respondents, users should be aware that in some cases, the respondent may have moved, had a change in the composition of their household, or had a change in employment between the date of the 2016 Census and the date of the 2017 CSD interview. In other words, some of the information provided by the census may not be reflective of the respondent’s situation when the CSD interview took place. In addition, some census data have undergone imputation processes or have been completed by members of the household other than the selected CSD respondent and therefore may present some inconsistencies with data collected for the CSD.

A complete list of the census variables and their specifications are provided in the 2017 CSD Data Dictionaries. Census variables are grouped by subject matter. Contact Statistics Canada Client Services for details or call 1-800-263-1136.

2.10 A special note about age data

Age is a core demographic factor of interest in the analysis of disability in Canada. When using age as a component of research with 2017 CSD data, or in combination with linked data from the 2016 Census, it is important for users to keep in mind the different reference periods involved. Section 6.2 of this guide provides an explanation of these survey reference periods. With respect to age, it is important to note that data collected from respondents in the context of the 2016 Census were collected on May 10, 2016 while data from the CSD were collected 10 to 15 months later, between March and August 2017. For example, CSD respondents who were 15 years of age at the time of the 2016 Census were 10 to 15 months older at the time of the CSD. In general, estimates about persons with disabilities disseminated by Statistics Canada will be based on age as of the reference date of May 10, 2016. With respect to particular research studies that may be sensitive to this time lag, data users will have the option of selecting an age indicator based on the 2016 Census reference period or an age variable based on the date of the 2017 CSD interview. Section 6.2 provides an understanding of the use of survey reference periods in relation to different types of data analyses that may be of interest to users.

2.11 Geographies

The 2017 CSD was designed to produce reliable data for each of the provinces and territories. Other geographic variables are also available in the 2017 CSD database, based on geographies from the 2016 Census, such as census metropolitan areas and Inuit regions. In addition, geographies will include health regions across Canada which represent administrative areas or regions as used by health authorities. However, users should note that not all CSD survey data can be cross-tabulated or analyzed at these more detailed levels of geography. Some data tables will be possible but the reliability of data estimates at these levels of geography will need to be examined on a case-by-case basis.

The 2016 Census Dictionary defines geographies relevant to the CSD. More details on health regions can be found on the Statistics Canada website.


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