Review Of Datasets And Their Disability Questions: Method And Results

This report starts with a systematic analysis of the disability questions in national censuses and household surveys globally.  Survey and census questionnaires from 2009 to 2018 were retrieved from the online International Household Survey Network Microdata catalog, the World Bank Microdata Library catalog, the International Labor Organization survey catalog, the repository of census questionnaires maintained by the United Nations Statistics Division, and the websites of individual National Statistical Offices. The resulting pool of censuses and surveys included 828 datasets and 1,486 dataset-years from 180 countries and territories (countries thereafter). The review covered countries in East Asia and the Pacific (30), in Europe and Central Asia (46), Latin America and the Caribbean (29), Middle East and North Africa (18), North America (2), South Asia (8) and Sub-Saharan Africa (47).

Disability can be defined in a variety of ways, which gets reflected through various questions in surveys (Appendix 3 Method briefs #1 and #2). Each dataset questionnaire was searched for any disability question. If disability questions were found, they were categorized as follows: (i) questions of the Washington Group (WG) Short Set (WGSS) covering six domains (seeing, hearing, walking, cognition, self-care, communication); (ii) functional difficulty questions (four to six of the domains in (i) but not the same wording as in the WGSS questions and/or answers); (iii) activity of daily living (ADL) questions; (iv) broad activity limitation question (e.g. “are you limited in the kind of, or amount of, work you do due to a health condition or impairment?”); (v) general disability question (e.g. “do you have a disability?”); (vi) other disability questions (e.g. “do you receive disability benefits?”). Only questions as per (i) and (ii) are considered to be internationally comparable questions on disability as recommended by the United Nations Principles and Recommendations for Population and Housing Censuses (2017, p. 207). Questions need to cover at least the four essential domains of functional difficulties (seeing, hearing, walking, cognition).

The rest of this section describes and discusses the main results out of this dataset review. The entire set of results is available in the Dataset Review Results Tables.

As shown in Table 3.1, disability questions of any kind are found in 76% of the countries and 35% of the datasets under review. In other words, one important finding in this review is that disability questions are absent for 24% of countries and 65% of datasets. Collecting data on disability in censuses and surveys should become standard, as it is for sex or age.

Table 3.1 also shows the share of countries and datasets with functional difficulty questions: 47% of the countries and 16% of the datasets under review have functional difficulty questions in their surveys or censuses. Separating out countries and surveys with the WGSS and with other functional difficulty questions, 33 countries and 45 datasets have the WGSS, while 64 countries and 88 datasets have other functional difficulty questions.  Although the WGSS is a concise and internationally tested tool, it remains rare on a global scale. Our analysis of datasets over the 2009-2018 shows however that the WGSS has been increasingly adopted[1].

Table 3.1: Results of the Review of Datasets

Countries or datasets Number of countries Share of countries Number of datasets Share of datasets
Under review in the study 180 100% 828 100%
With at least one disability question of any kind 136 75.6% 293 35.4%
With functional difficulty questions 84 46.7% 131 15.8%
– With the Washington Group Short Set (WGSS) 33 18.3% 45 5.4%
– With other functional difficulty questions 64 35.6% 88 10.6%

Source: Own calculations based on dataset review described in the text.

Note: Functional difficulty questions could be the WGSS or other functional difficulty questions. The number of countries or datasets with functional difficulty questions does not add up to the numbers of countries or datasets with the WGSS and with other functional difficulty questions as some countries or datasets have both.

Figure 3.1 below maps countries that were found to have data on functional difficulties, i.e. with the WGSS or other functional difficulty questions. On a similar note, countries and datasets with the WGSS and with other functional difficulty questions from 2009 to 2018 are listed in the Dataset Review Results Tables.

Figure 3.1: Countries With And Without Functional Difficulty Questions In National Censuses Or Surveys (2009-2018)

Table Supporting Figure 3.1
Map of the world showing countries with and without functional difficulty questions on national censuses or surveys.

Source: Own research and review of questionnaire

As shown in Figure 3.1, functional difficulty questions tend to be available in Asia, in North and Latin America and in some countries in Sub-Saharan Africa. Most countries in Europe and Central Asia, Middle East and North Africa do not have national datasets with functional difficulty questions.

In addition, this review also found a consistent pattern of asking only the most basic question: “do you have a disability?”[2]. This is a lost opportunity as such a question cannot be meaningfully used in international research as it may mean different things to different respondents and responses may not be reliable due to stigma around disability[3].

This analysis of survey and census questionnaires has several important limitations. It covers surveys and censuses that had questionnaires available in English, French, Portuguese, or Spanish. It does not cover surveys with a focus on children (e.g. Multiple Indicator Cluster Survey). The list of datasets under consideration is not exhaustive in that some were not covered as their questionnaires were not available in a language that researchers understood[4]. It is also possible that some datasets were missed.

Nonetheless, this dataset review is valuable in that it shows regions of the world where internationally comparable disability data is missing and it supports calls for further disability data collection globally. In many countries and datasets, persons with disabilities are invisible.  Much work remains to be done to implement Article 31 of the CRPD for States Parties “to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”.

[1] Our review does not reflect the recent adoption of the WGSS (2019, 2020). As per a private communication with the WG secretariat, some countries reported to the WG secretariat to have used the WGSS in data collection and yet are not found to have the WGSS in the datasets reviewed in this report.

[2] This is not shown in Table 3.1 or Figure 3.1.

[3] Further background materials on disability questions are in Appendix 3 Method brief #2 and detailed results for each of the six types of disability questions are in Mitra, Chen et al (2021) for low- and middle-income countries.

[4] This limitation due to language may affect countries and regions of the world differently.