metadata: authors: 0: author: Mitra,Sophie
1: author: Chen,Wei
2: author: Herve,Justine Francoise Marie
3: author: Pirozzi,Sophia
4: author: Yap,Jaclyn Lourdes Alcala
count: World
docna: 0: docna: Invisible or Mainstream ? Disability in
            Surveys and Censuses in Low- and Middle-Income Countries
docty: Policy Research Working Paper
subtopic: Disability,Health Care Services Industry,Public Health Promotion,Disease Control & Prevention,Labor & Employment Law
teratopic: Social Protections and Labor,Industry,Health, Nutrition and Population,Law and Development
abstracts: cdata!: This paper examines to what extent
            household surveys and censuses in low- and middle-income
            countries include disability questions and the types of
            questions under use. A pool of 734 data sets and 1,297 data
            set-years from 133 low- and middle-income countries from
            2009 to 2018 were screened for disability questions, which
            were classified by type of questions: Washington Group short
            set of questions, other functional difficulty questions,
            activities of daily living, broad activity limitation,
            general disability, and other disability questions. Only 31
            percent of the data sets under review had at least one
            disability-related question and 15 percent of the datasets
            of low- and middle-income countries have functional
            difficulty questions that meet international standards,
            whether the Washington Group short set or other functional
            difficulty questions. The most commonly found disability
            question is the general question “Do you have a disability?”
            which does not produce meaningful and internationally
            comparable data. The adoption of functional difficulty
            questions such as the Washington Group short set in national
            censuses and surveys and in international surveys is needed
            to monitor the implementation of the 2030 Agenda for
            Sustainable Development as well as the Convention on the
            Rights of Persons with Disabilities.
repnme: repnme: Invisible or Mainstream ? Disability in
            Surveys and Censuses in Low- and Middle-Income Countries
display_title: Invisible or Mainstream Disability
            in Surveys and Censuses in Low- and Middle-Income Countries
listing_relative_url: /research/2021/04/32993923/invisible-or-mainstream-disability-surveys-censuses-low--middle-income-countries
topicv3: Health of the Disabled m1326337 1464,Environment, Natural Resources and Blue
            Economy m1327391 566,Household Surveys m1504071 2761,Health m1504661 3480,Disability m1583873 4215
publishtoextweb_dt: 2021-04-13T00:00:00Z
dois: 10.1596/1813-9450-9625
historic_topic: Social Protections and Labor,Industry,Health, Nutrition and Population,Law and Development
origu: DECSR-Strategy and Resources (DECSR)
no_of_pages: 26
author_keys: 0: author_key: 810668
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model_extractions: Policy Research Working Paper 9625

# Invisible or Mainstream?

Disability in Surveys and Censuses in Low- and Middle-Income Countries _Sophie Mitra Wei Chen Justine Hervé Sophia Pirozzi Jaclyn Yap_ Development Economics Development Data Group April 2021
Policy Research Working Paper 9625

# **Abstract**

This paper examines to what extent household surveys and censuses in low- and middle-income countries include disability questions and the types of questions under use. A pool of 734 data sets and 1,297 data set-years from 133 low- and middle-income countries from 2009 to 2018 were screened for disability questions, which were classified by type of questions: Washington Group short set of questions, other functional difficulty questions, activities of daily living, broad activity limitation, general disability, and other disability questions. Only 31 percent of the data sets under review had at least one disability-related question and 15 percent of the datasets of low- and middle-income countries have functional difficulty questions that meet international standards, whether the Washington Group short set or other functional difficulty questions. The most commonly found disability question is the general question “Do you have a disability?” which does not produce meaningful and internationally comparable data. The adoption of functional difficulty questions such as the Washington Group short set in national censuses and surveys and in international surveys is needed to monitor the implementation of the 2030 Agenda for Sustainable Development as well as the Convention on the Rights of Persons with Disabilities.

This paper is a product of the Development Data Group, Development Economics. It is part of a larger effort by the World Bank to provide open access to its research and make a contribution to development policy discussions around the world. Policy Research Working Papers are also posted on the Web at http://www.worldbank.org/prwp. The authors may be contacted at mitra@fordham.edu.

_The Policy Research Working Paper Series disseminates the findings of work in progress to encourage the exchange of ideas about development issues. An objective of the series is to get the findings out quickly, even if the presentations are less than fully polished. The papers carry the names of the authors and should be cited accordingly. The findings, interpretations, and conclusions expressed in this paper are entirely those of the authors. They do not necessarily represent the views of the International Bank for Reconstruction and Development/World Bank and its affiliated organizations, or those of the Executive Directors of the World Bank or the governments they represent._ Produced by the Research Support Team
# **Invisible or Mainstream? Disability in Surveys and Censuses in Low- and Middle-Income Countries**

**<mark>Sophie Mitra, Wei Chen, Justine Hervé, Sophia Pirozzi and Jaclyn Yap</mark>**

Originally published in the <u>Policy Research Working Paper Series on</u> _April 2021._ This version is updated on _May, 2021._ To obtain the originally published version, please email prwp@worldbank.org.

JEL codes: I30; I31; J11; J14; R20.

Keywords: Data; Censuses; Surveys; Disability; Functional Difficulties.

**Acknowledgments.** Wei Chen, Justine Hervé, Sophie Mitra, Sophia Pirozzi and Jaclyn Yap are affiliated with Fordham University. This paper is a product of the World Bank Development Data Group (DECDG)’s Inclusive Data and Statistics Project (P170339), led by Buyant Erdene Khaltarkhuu and Akiko Sagesaka. Wei Chen, Justine Hervé, Sophie Mitra and Jaclyn Yap were consultants at the World Bank for this project. The authors can be reached at mitra@fordham.edu.

This study <mark>received funding from the World Bank’s Trust Fund for Statistical Capacity Building (TFSCB) and from the Wellspring Philanthropic Fund. The findings, interpretations, and conclusions expressed in this paper are entirely those of the authors. They do not necessarily represent the views of the International Bank for Reconstruction and Development/World Bank and its affiliated organizations, or those of the Executive Directors of the World Bank or the governments they represent. We are grateful for insightful comments on an earlier draft from Jose Cuesta, Mari-Helena Koistinen, Mitchell Loeb, Daniel Mont and Deepti Raja.</mark>
# **Invisible or Mainstream? Disability in Surveys and Censuses in Low- and Middle-Income Countries**

Sophie Mitra, Wei Chen, Justine Hervé, Sophia Pirozzi, Jaclyn Yap

# 1. **Introduction**

The Sustainable Development Goals (SDGs) endorsed by the United Nations member states have the mission to “leave no one behind.” Monitoring the SDGs is critical to achieving this goal. The Inclusive Data Charter signed by the World Bank and other global data partners in 2018 aims to mobilize political support in order to improve the quality, quantity, availability, and financing of disaggregated data to support the 2030 United Nations Agenda’s ambition of leaving no one behind. Article 31 of the United Nations Convention on the Rights of Persons with Disabilities **(** CRPD **)** provides that <mark>“States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”</mark> (United Nations 2006 <mark>). In addition, it stipulates that “the information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties' obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.”</mark> Achieving the SDGs and rights for persons with disabilities as per the CRPD requires quality and policy-relevant data on a range of outcomes that are collected and presented by disability status, based on concepts that are in line with a human rights approach to disability, and reflective of the diversity of people with disabilities and various aspects of their lives. This paper assesses the extent to which household surveys and censuses between 2009 and 2018 have included disability questions. It analyzes the types of disability questions implemented during this period, with the particular aim to identify surveys and censuses that can potentially be used to produce SDG or CRPD related indicators disaggregated based on disability status using internationally tested and comparable disability questions.

Disability has been a drop in the ocean of international development work. This lack of attention to disability is perhaps not surprising. There are confusions and misconceptions on what disability is and the scale of the phenomenon. The term “disability” itself is elusive. One cannot simply ask in a survey if anyone in the household has a disability as individuals and cultures may have different understandings of disability. In general, respondents tend to report only extreme cases of impairments (e.g. blindness), leaving out severe or moderate cases. They may also not report a disability due to stigma and older people may also not think of themselves as having a disability, but as being old. Disability is therefore not a simple characteristic. It can be defined and measured in different ways, for instance in medical terms or as resulting solely from barriers in society (Goodley 2016, Mitra 2018).

While the lack of data on disability has long been noted (e.g. WHO-World Bank 2011), the Disability and Development Report (United Nations 2019) notes that “National disability 2
statistics are increasingly available.” This is, in part, due to the growing number of countries that collect disability data in censuses. At least 120 of 214 countries or regions that conducted a census during the 2010 round included a set of questions on disability, a significant increase from approximately 19 countries or areas that did so during the 1970 census round. A major challenge though is how to collect the disability data that are needed to inform policy and advocacy efforts as part of the CRPD and the 2030 Agenda for Sustainable Development. As with any complex social science phenomenon, there are several options when it comes to the scale and methods for data collection efforts. One option is to have a qualitative and participatory effort involving multiple stakeholders including persons with the lived experience of a disability. It may go a long way in understanding the situation of persons with disabilities and informing policy and advocacy efforts at one place and one point in time. However, it would not provide nationally representative or internationally-comparable data that are needed to ensure that persons with disabilities worldwide are not left behind post-2015. Another option is to develop a national disability survey with a battery of questions to measure disability and identify service needs and barriers, as well as to understand the factors leading to disability related inequalities. This is suitable provided significant resources and capacity for data collection are available and have the potential to provide very rich information to inform national or even subnational policy and advocacy efforts. The World Bank and the World Health Organization have developed a Model Disability Survey to this end (Cieza et al 2018; Groc 2019; WHO 2020). It has a full stand-alone survey which takes 60 to 120 minutes to accomplish. It also has a brief version, taking an average of 10-15 minutes to complete and includes over 40 questions on environmental factors, functioning and health conditions. Few countries may, however, have the capacity or resources needed to develop and implement the stand-alone survey or include the brief version in an existing survey, let alone repeat this over time for monitoring the situation of persons with disabilities post-2015 and in the context of the CRPD.

Yet another option consists in using a few questions to measure disability in a population census as well as in general or mainstream household surveys, such as the Living Standards Measurement Study. A population census or a mainstream survey makes it possible to measure prevalence as well as inequalities across disability status for general indicators such as employment rates and educational attainment. However, unlike the participatory and disability surveys above, it will not allow for an in-depth analysis of disability-specific barriers or challenges, nor facilitate understanding of the drivers of inequalities. However, it may give very useful information when it comes to tracking the situation of persons with disabilities in different aspects of their lives. Of course, measuring disability with a few questions is challenging, especially if it has to be done in an internationally-comparable manner for global SDG and CRPD related monitoring efforts. Since 2001, there has been an international effort to collect internationally comparable disability data by the United Nations’ Washington Group on Disability Statistics (the “Washington Group'' (WG)). This group, organized under the United Nations Statistical Commission, gathers over 100 representatives of National Statistical Offices as well as other government, non-government, and disabled people’s organizations. There was a broad consensus on the need for population-based measures of disability for country use and for international comparisons and the Washington Group on Disability Statistics was formed to address this urgent need. The main purpose of the Washington Group is to promote and coordinate international cooperation in the area of disability measures. The Washington Group has developed and tested questions and made recommendations for a short set of six questions 3
(WGSS), an enhanced short set of 12 questions (WGSS-enhanced), an extended list of more than 30 questions (WGES), and finally a functioning module for children developed in collaboration with UNICEF (Altman 2016, Adans et al 2018). The recommended short set includes six questions on limitations in the domains of seeing, hearing, walking or climbing steps, concentrating, communicating, and self-care (specifically, showering or dressing). The United Nations encourages governments to include (at least) the short set of questions recommended by the Washington Group in censuses and surveys. This option of using the short set of questions to measure disability does not capture all areas of functioning and would not satisfy all data needs but does provide a way to use population censuses and mainstream household surveys to monitor the SDGs and the CRPD.<sup>1</sup> In light of disability data needs to monitor the 2030 Agenda and the CRPD and recent progress in developing and testing internationally-comparable disability questions, the goal of this paper is to review the extent to which household surveys and population censuses include disability questions in low- and middle-income countries from 2009 to 2018. Section 2 provides background on measuring disability through household surveys and censuses. Section 3 reviews different types of questions on disability, and section 4 describes the data sets under review. Section 5 presents the results and section 6 provides the discussion and conclusion.

# **2. Background**

Measuring disability through household surveys and population censuses is a very complicated task and there is not a gold standard approach. How disability is measured depends on the objective of the measurement exercise. The goal might be to document disability prevalence and incidence, assess inequalities associated with disabilities, or evaluate service needs as well as policies and laws.

More fundamentally, measurement also reflects how disability is understood and defined, whether implicitly or explicitly. Because disability can be defined in a variety of ways, it can also be measured in many ways. Different conceptual models have been developed to define disability (Davis 2017; Goodley 2016). For instance, the medical model treats disability as a problem of the individual requiring medical treatment and rehabilitation. An individual with an impairment is considered disabled irrespective of whether it limits functioning and activities. On the other hand, the social model considers disability as socially created. Disability is not about the individual, but about the social environment in which the person lives. For instance, a person with a physical impairment may be unable to work because workplaces lack ramps and elevators and, thus, are inaccessible. Since the 2000s, disability has often been defined through interactional models as a biopsychosocial phenomenon, one that results from an individual with a health condition interacting with environmental factors. This understanding is for instance consistent with the commonly used International Classification of Functioning, Disability, and Health (ICF) (WHO 2001). In the ICF, functioning refers to body functions and structures, activities and participation, while disability is an umbrella term for impairment (e.g. blindness),

> 1 The data collection options above could be blended. There could be a short questionnaire (e.g. WGSS or the WGSS-enhanced) as part of a core questionnaire and then special modules added from time to time to capture for instance environmental barriers and other determinants of inequalities. For instance, this is the approach used by ILO (WG-ILO 2020) in its recommendations for Labor Force Surveys.

4
functional difficulties (e.g. difficulty seeing), activity restrictions (e.g. difficulty feeding oneself) and participation restrictions (e.g. restricted in socializing). This paper considers disability as an interactional and biopsychosocial phenomenon, consistent with the ICF and other interactional models (Goodley 2018, Mitra 2018).

Besides varying underlying measurement objectives and conceptual definitions, there are different ways to collect disability data. These are “self-perceived and observed” data (Murray and Chen 1992). Self-perceived measures give an individual’s own perception of limitations, while observed measures rely on an external party’s assessment. Both types of measures provide complementary and valuable information (Murray and Chen 1992). There is typically no observed data in surveys and censuses in low- and middle-income countries. Thus, self-reported measures are used in this study and are therefore the focus of this paper.

# **3. Disability questions in household surveys and censuses**

As can be anticipated, there are different ways to measure disability through self-reports (Mitra 2018; Palmer and Harley 2012). We describe below the different types of questions that have been commonly used in surveys and censuses: functional difficulties, activities of daily living, broad activity limitations, general disability/impairment questions and other questions.

# **Functional difficulties**

Functional difficulties refer to difficulties experienced with particular bodily functions such as seeing and hearing. The term is used to also include basic activities such as walking and daily activities such as feeding oneself. The United Nations Statistical Commission (United Nations 2015, 2017) adopted revised guidelines for the collection of disability data in national censuses. "It is suggested that only those domains that have satisfied a set of selection criteria be eligible for inclusion in a short set of questions recommended for use in censuses. Criteria for inclusion include cross-population or cross-cultural comparability, suitability for self-reporting and space on the census form. Other suggested criteria include the importance of the domain in terms of public health problems” (United Nations 2017). The Commission recommends that the following four functional domains be considered essential in determining disability status in a way that can be reasonably measured using a census and that would be appropriate for international comparison: (a) Walking; (b) Seeing; (c) Hearing; (d) Cognition. It also notes that two other domains, self-care and communication, have been identified for inclusion, and if possible, upperbody functioning is another domain that should be considered for inclusion. There have been efforts to generate internationally comparable and tested questions, notably by the Washington Group.

# **_Washington Group Short Set_**

Specifically, the Washington Group has developed and tested a set of six questions, also known as the Washington Group Short Set (WGSS). The WGSS’ strength is in its brevity and is wellsuited for use in censuses and national surveys. In conjunction with other data collected on outcome indicators (access to education or employment), it additionally helps to inform policy on equalization of opportunities. It starts with an optional introduction as follows: “The next questions ask about difficulties you may have doing certain activities because of a health problem.” It then has questions covering six different domains as follows: 1. Do you have 5
difficulty seeing, even if wearing glasses? 2. Do you have difficulty hearing, even if using a hearing aid? 3. Do you have difficulty walking or climbing steps? 4. Do you have difficulty remembering or concentrating? 5. Do you have difficulty with self-care (such as washing all over or dressing)? 6. Do you have difficulty communicating? The WGSS uses a four-level scale (no difficulty, some difficulty, a lot of difficulty, or cannot do entirely) to capture individuals’ degree of functional difficulty in each of the six domains.

The WGSS has undergone extensive cognitive and field testing in multiple languages and locations (Madans, Loeb, & Altman, 2011, Miller 2016). It is an internationally tested and widely accepted tool (Groce and Mont 2017). The UN Statistical Commission and the UN’s Economic Commission for Europe’s Council of European Statistics recommended the WGSS for collection of disability information for the 2020 round of censuses.

These questions on functional difficulties are not without limitations. For instance, although tested in 14 countries (Miller 2016), an understanding of functional difficulties in the WGSS may be limited in a context with limited access to health care and may lead to underreporting (Schneider 2016). The WGSS covers only a few domains and may well under-identify people with psychological difficulties, a concern that may be alleviated to some extent in the WGSSEnhanced, which is the short set and four additional questions on anxiety and depression, and another two on upper body mobility.

# **_Other functional difficulty questions_**

Functional difficulty questions may be found in questions that are different from those in the WGSS and in other international questionnaires.

First, although the WG recommends that the WGSS be adopted as is, some data sets have included selected questions only, changed the answer scale or the wording of questions, and/or altered the introduction to the questions. There are thus data sets that have questions somewhat similar to the WGSS.

In addition, there are functional difficulty questions that are independent of the WGSS. Some internationally tested survey tools such as the Model Disability Survey (Cieza et al 2018) or WHO-DAS 2.0 (WHO 2020) and other recent tools (e.g. Trani et al., 2015, Eide et al 2006) do include functional difficulty questions. For instance, WHO-DAS 2.0 has questions on cognition, mobility, and self-care.

# **Activities of Daily Living**

Disability has been measured using difficulties in Activities of Daily Living (ADL). There are different types of ADLs, including basic and intermediate. Basic ADLs are fundamental for body functioning (e.g. walking a specific distance) and include self-care activities such as feeding oneself, going to the bathroom without help, and dressing without help, bathing, eating, walking, toileting, urination and defecation. Intermediate ADLs are more complex tasks such as shopping, housekeeping, food preparation, and managing money.

ADL questions were initially developed to capture the physical effects of aging, and, as such, in some surveys the questions are only administered to respondents above a certain age (e.g. 45 and above). Intermediate ADLs include role activities, such as caring for others, that can be broad 6
(Stewart & Ware, 1992). In an international context, a limitation of such questions is in how daily activities, especially beyond basic ones, may vary considerably across contexts, and thus, one drawback of ADLs in international studies is their potential lack of comparability.

# **Broad activity limitation**

A broad activity limitation question asks the respondent if he/she is limited in their usual activities due to a chronic health condition or an impairment, such as work or housework for adults or attending school for children. It relates to role functioning, the extent to which an individual performs or has the capacity to perform activities typical for a specific age and social responsibility (Steward and Ware 1992). Because it is only one question, it is easy to insert in a survey. Similar to intermediate ADLs, usual activities vary in an international context, and answers may thus not be comparable across countries. A broad activity limitation question has additional drawbacks (Mitra 2018). Conceptually, such a question gets at a health condition or impairment as well as a potential resulting deprivation. Thus, it tries to get the causal link from the health condition/impairment to the deprivation, as perceived by the respondent. Respondents may not be aware of the ways that their health condition or impairment affects their broad activities. Responses may also be subject to different types of biases. For instance, the rationalization bias may encourage a person who does not work to report a health condition as the primary reason for non-employment, even if it is not. Another example is when people have adapted to their impairment in such a way that they no longer perceive how it affects their employment.

A broad activity limitation question makes it difficult to monitor disability over time. As an example, using a broad activity limitation question related to schooling among children: ‘is your child limited in the amount or the type of schooling you can have due to a physical, mental or emotional condition?’ Such a question does identify persons with perceived limited schooling opportunities due to a health condition. This question does not identify children with health conditions who have been able to access schooling, which is problematic. It is problematic that the outcome (employment or education) is part of the question. That makes it impossible to disaggregate across disability status. Using such a question, say in an environment where education becomes more inclusive through the provision of accommodations in schools, one would get a decline in the prevalence of disability over time but the negative correlation between schooling attendance and disability may persist or worsen as disability may include people with the more severe health conditions.

# **General Disability**

Censuses and surveys sometimes have a general disability question such as _“Do you have a disability?”_ This general question has sometimes been used with answers about disability types or impairments (e.g. blindness, deafness, paralysis) or with a yes/no answer as a screen for a follow-up question asking about disability type or impairment. Such a general question was very common in the censuses of the 1970s, 1980s, 1990s and 2000s (e.g. United Nations 1990).

The general disability question is problematic in terms of the validity of what it measures. First, it is unclear what such a general question measures as disability may mean different things to different interviewees. Additionally, impairments may be unknown to respondents, especially in the context of populations with limited access to health care or information. Furthermore, disability and impairments may be stigmatized and thus interviewees may not feel comfortable 7
self-reporting. Finally, the general disability question tends to lead to underestimates of disability prevalence (Mont, 2007) as they capture severe impairments and tend to miss disabilities associated with old age as older people may not think of themselves as disabled but simply as older persons. For these reasons, it is not considered good practice to use the general disability question, let alone for the purpose of producing internationally-comparable statistics on disability.

Yet, likely due to its conciseness and a lack of awareness on its drawbacks, this question can still be found in some surveys and censuses and this paper examines in the next section to what extent this has continued to be the case in the past decade.

# **Other disability-related questions**

There are many other types of disability questions beside functional difficulties, ADL, broad activity limitations, and general disability questions. Some surveys such as the Model Disability Survey have questions on barriers people may face in their environment, whether physical, social, or attitudinal. These are particularly useful in understanding the drivers of difficulties or deprivations people may experience.

In some countries, surveys or censuses ask respondents if they are part of an official registry of people with disabilities which would give them access to services or benefits. More often, surveys have questions on impairments and on specific health conditions.

Health conditions may be temporary or chronic, physical, or mental, life threatening or not, infectious or non-communicable. Not everyone has access to health services, which is necessary to have a diagnosis associated with doctor/clinic visit or hospitalization. Such questions, in fact, identify those with a diagnosis as among those with access to health care, which may be a small minority in the global south. In order to capture health conditions among those who may not have received a diagnosis, some questionnaires attempt to find out if respondents have experienced certain symptoms and to figure out if the person has specific health conditions. This would be the case, for instance, with depression for which a questionnaire may ask about a person’s thoughts about death or difficulty sleeping at night. However, this method may require a lot of questions and may not be feasible for all health conditions. Several of the questionnaires noted earlier such as the WG Enhanced and Extended Sets and the Model Disability Survey questionnaire do have questions that try to get at the symptoms of some conditions, particularly depression.

Finally, some questionnaires such as the Model Disability Survey questionnaire and WHO - DAS (WHO 2012) blend several of the disability question types discussed above. WHO-DAS 2.0 has a mix of functional, ADL and broad activity limitations. The Model Disability Survey has questions on functional difficulties, ADL, broad activity limitations, health conditions and environmental factors. This paper reviews the questionnaires in surveys and censuses in low- and middle-income countries and the extent to which they include any disability-related questions and what type of disability question.

8
# **4.  Data sets under review**

To the best of our knowledge, there is no comprehensive database of household surveys and their disability questions. We searched for household surveys and censuses conducted in low- and middle-income countries between 2009 and 2018. Surveys prior to 2009 would be unlikely to have internationally comparable disability questions as much of the work to develop internationally-comparable disability questions started in the 2000s. Some of the data sets post 2018 were not yet available at the time this research study was conducted. The period under consideration is 2009 to 2018.

The surveys and censuses 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. Additional surveys were sourced from the World Bank.

Our data consist of the questionnaires from household surveys and censuses in LMICs between 2009 and 2018. The list of surveys under review includes some of the major international surveys: Living Standards Measurement Study (LSMS), the Survey of Income and Living Conditions (SILC), Global FINDEX, and the Demographic and Health Survey (DHS). The Global FINDEX survey is standardized across countries, hence only the global questionnaire was reviewed for each year. The analysis is restricted to data available from surveys that may be used in monitoring general outcomes among adults with disabilities and their household. It also includes national surveys, general ones, as well as topical surveys such as health, disability, labor force surveys, or surveys focused on water/sanitation, or transition to adulthood. DHS is a major global health data set and in 2014, the DHS program developed a disability data collection optional module based on the WGSS. Some countries have changed questions in the module (Casebolt 2020).

The resulting pool included 734 data sets and 1,297 data set-years and censuses from 133 countries in East Asia/Pacific (22 countries), Europe & Central Asia (23 countries), Latin America & Caribbean (24 countries), Middle East and North Africa (12 countries), South Asia (8 countries), and Sub-Saharan Africa (44 countries).<sup>2</sup> Each of the 1,297 data set-years was screened for disability questions. The full list is in Appendix 1. We conducted a systematic assessment of the survey questionnaires to figure out which ones included any of the disability questions described in Section 1. Each questionnaire was searched looking for several disability-related words noted below in italics: _disability, impairment ( blind, deaf, dumb, mental, physical), limited in usual activit_ (y/ies _), limited in the amount of work or type of work or activities related to work_ , ADLs ( _walking, dressing, bathing, eating, walking, toileting, urination and defecations) and questions related to limitations in IADLs (housework, shopping, cooking, managing money, and taking medicine, phone_ ), _difficulty in seeing, hearing, walking, concentrating, self-care, communicating_ .

> 2 The data sets that were reviewed are listed in this document.

9
One question that did not count as a disability question and yet is often found in surveys is a question on why someone did not work (or attend school for children), with disability as one possible answer. It is relevant only for the subset of adults who do not work and thus cannot capture the broader population of people with disability. The review was conducted from November 2019 to November 2020.

Each of the data sets above was reviewed by at least one researcher. It was reviewed by two researchers if at least one disability question was found.

This analysis has limitations. We only reviewed surveys and censuses that had questionnaires available in English, French, Portuguese, or Spanish. We did not cover surveys with a focus on children.<sup>3</sup> In addition, questions may be in a questionnaire and yet not be implemented in the field. We also did not review how questionnaires were implemented, notably how survey staff might have been trained on disability related questions. The list of data sets under consideration is not exhaustive in that some were not covered as their questionnaires were not available or not in a language that the authors understood. It is also possible that some were missed. National data sets were prioritized in that we did not search for data sets that focused on regions within countries and has thus did not cover some recent international research and data collection efforts (e.g. Mactaggart et al 2018, Trani et al 2015). Despite these limitations, this study has noteworthy results.

# **5. Results**

Tables 1 and 2 and Appendices 1 through 4 give the lists of countries and data sets for each type of disability question: WGSS, other functional difficulty, ADL, broad activity limitation, general disability question and other types of questions. Table 1 gives the list of countries and surveys with the WGSS between 2009 and 2018. In total, 32 countries, 46 data sets and 52 data set-years have included the WGSS between 2009 and 2018. The WGSS seems to have been adopted in Asia and in Sub-Saharan Africa more than in other regions. Further, it has been adopted in a variety of surveys, including international ones such as the Demographic and Health Survey (DHS), the Household Income and Expenditure Surveys and the LSMS (Malawi HIS, Nigeria GHS, Tanzania NPS, Uganda NPS). It has also been adopted in thematic surveys such as the Survey of Water, Sanitation, and Hygiene in Tajikistan. In six countries (Bangladesh, Ethiopia, Liberia, Nigeria, Tanzania, Uganda), the WGSS was used in multiple years for the same survey. Results are presented for one decade (2008-2018), with more data sets with the WGSS in recent years: 40% of data set-years with the WGSS were for the 2009-13 and 60% in 2014-18 periods, suggesting an increasing adoption of the WGSS in recent years.

> 3 We did not cover the UNICEF Multiple Indicator Cluster Surveys.

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<!-- Start of picture text --> @® LMC without data on functional difficulties tA<br>. 7 > HIC ;<br>4 ©) LMIC with data on functional difficulties « ; 4<br>= f yo<br>DANUARY 0 - No data : 4<br><!-- End of picture text -->
<!-- Start of picture text --> East Asia & Pacific<br>Cambodia Demographx and Health Survey (DHS) 2014<br>Fiji Population Census 2017<br>Phillipines Model Functioning Survey 2016<br>Samoa Labour Force and School-to-Work Transition Survey 2017<br>Timor Leste Demographx and Health Survey (DHS) 2016<br>Tonga Population Census 2016<br>Labor Force Survey (LFS) 2018<br>Tuvalu Population Census 2017<br>Europe & Central Asia<br>Moldova Population Census 2014<br>Serbia School-to- Work Transition Survey (SWTS) 2015<br>Tajikistan Survey of Water, Sanitation, and Hygiene (WASH) 2016<br>Latin America and Caribbean<br>Costa Rica National Disability Survey 2018<br>Haiti Demographx and Health Survey (DHS) 2016<br>Middle East and North Africa<br>Jordan Population Census 2015<br>South Asia<br>A fphanistan Living Conditions Survey (LCS) 2016<br>Bangladesh Household Income and Expenditure Survey (HIES) 2010, 2016<br>Pakistan Demographx and Health Survey 2017<br>Social and Living Standards Measurement Survey (PSLM) 2010<br>Sub-Saharan Africa<br>Benin Enquete sur la Transition vers la Vie Active (ETVA) 2011<br>Ethiopia Econom and Social Survey (ESS) 2011, 2013, 2015<br>Gambia, The Labor Force Survey (LFS) 2018<br>Lesotho Contmuous Multipurpose Household Survey/ Household Budget Survey 2017<br>Population and Housing Census 2016<br>Libena Core Welfare Indicators Questionnaire Survey (CWIQ) 2010<br>Household Income and Expenditure Survey (HIES) 2014, 2016<br>Makhwi Third Integrated Household Survey (IHS) 2010<br>Maldives Demographic and Health Survey (DHS) 2009<br>Mah Demographx and Health Survey (DHS) 2018<br>Namibia National Household Income and Expenditure Survey (NHIES) 2015<br>Nigeria General Household Survey Panel (GHSP) 2010, 2012, 2018<br>Demographic and Health Survey (DHS) 2018<br>Rwanda Labor Force Survey (LFS) 2018<br>Senegal Census 2013<br>Demographx and Health Survey (DHS) 2018<br>South A frica Demographic and Health Survey (DHS) 2016<br>General Household Survey (GHS) Yearly from 2009-2018<br>Tanzania Household Budget Survey (HBS) 2011<br>National Panel Survey (NPS) 2010, 2014<br>Uganda National Panel Survey (NPS) 2009, 2010<br>National Household Survey 2009<br>Functional Difficulties Survey 2017<br>Demographx and Health Survey (DHS) 2016<br>Child Labor Baseline Survey 2009<br>Zimbabwe Intercensal Danographic Survey 2017 4<br><!-- End of picture text -->

|East Asia & Pacific<br>|||
|---|---|---|
|Cambodia|DemographxandHealthSurvey(DHS)|2014|
|Fiji|<br>PopulationCensus|2017|
|Phillipines|<br>ModelFunctioningSurvey|2016|
|Samoa|<br>LabourForceandSchool-to-WorkTransitionSurvey|2017|
|TimorLeste|<br>DemographxandHealth Survey (DHS)|2016|
|Tonga|Population Census|2016|
||LaborForce Survey (LFS)|2018|
|Tuvalu|Population Census|2017|
|Europe&CentralAsia|||
|Moldova<br>|PopulationCensus<br>|2014<br>|
|Serbia<br>|School-to- Work TransitionSurvey(SWTS)<br>|2015<br>|
|Tajikistan|Survey ofWater, Sanitation, andHygiene(WASH)|2016|
|Latin America and Caribbean|||
|CostaRica<br>|NationalDisability Survey<br>|2018<br>|
|Haiti|DemographxandHealthSurvey(DHS)|2016|
|Middle East and North Africa<br>|<br>||
|Jordan|PopulationCensus|2015|
|South Asia<br>|||
|A fphanistan<br>|Living Conditions Survey(LCS)<br>|2016<br>|
|Bangladesh|HouseholdIncome andExpenditureSurvey (HIES)|2010,2016|
|Pakistan|DemographxandHealthSurvey|2017|
||Social andLiving Standards Measurement Survey (PSLM)|2010|
|Sub-Saharan Africa|||
|Benin|Enquete sur laTransition vers laVieActive(ETVA)|2011|
|Ethiopia|EconomandSocialSurvey(ESS)|2011, 2013,2015|
|Gambia, The|Labor Force Survey (LFS)|2018|
|Lesotho|Contmuous MultipurposeHouseholdSurvey/HouseholdBudgetSurvey|2017|
||Population andHousing Census|2016|
|Libena|CoreWelfare Indicators Questionnaire Survey(CWIQ)|2010|
||Household IncomeandExpenditure Survey (HIES)|2014, 2016|
|Makhwi|ThirdIntegratedHouseholdSurvey(IHS)|2010|
|Maldives|DemographicandHealth Survey (DHS)|2009|
|Mah|DemographxandHealthSurvey(DHS)|2018|
|Namibia|NationalHouseholdIncome andExpenditure Survey (NHIES)|2015|
|Nigeria|GeneralHouseholdSurveyPanel(GHSP)|2010, 2012,2018|
||Demographic andHealth Survey (DHS)|2018|
|Rwanda|LaborForce Survey(LFS)|2018|
|Senegal|Census|2013|
||DemographxandHealth Survey (DHS)|2018|
|SouthA<sup>frica</sup>|Demographic and Health Survey (DHS)|2016|
||GeneralHouseholdSurvey (GHS)|Yearly from 2009-2018|
|Tanzania|Household BudgetSurvey(HBS)|2011|
||<br>NationalPanelSurvey(NPS)|2010,2014|
|Uganda|<br>NationalPanelSurvey(NPS)|<br>2009,2010|
||<br>NationalHouseholdSurvey|<br>2009|
||Functional Difficulties Survey|2017|
||DemographxandHealth Survey (DHS)|2016|
||ChildLabor Baseline Survey|2009|
|Zimbabwe|IntercensalDanographicSurvey|2017<br>4|
<!-- Start of picture text --> East Asia & Pacific<br>CambodiaChina SoaoEconomicChina Health And Retirement LongitudinalSurwy (SES) Survey (CHARLS)2011,Yeasty2013,from 2015,20182009-2014 (Mild,Differentm odesate, categoricalsevere answersdifficulty 4 domams_No sdf-cre/communacaion yes<br>Indonesia SUSENASStadyPopulationom GlobalCensusAreimp and Adult Health (SAGE) 2018 20 09-201010 ‘NoneNoneYes ttllyaways, , mild,Alittle,moderate,A lot.yes severe,alot, yesextremea little, no yes yes<br>SUPASSAKERNAS (LFS) 2017, 2018 No difficultyat all, slight/some/moderate. yes<br>Kiribati Population and Housing Census 2015215 No,Yes moderate,ttallyabways,severe, yes cannot alot, yes a itfe, no yesyes<br>Mongoka ‘Women's Health and Life Ex penences Survey 217 YesNo,if Yes, then WGSS answer scale<br>Marshall Is. Population and Housing Census 2011 4 domains. No self-care/communication yes<br>Miconesa Populahon<br>Myanmar Population andand Housmg Housing Census Census 20102014 44 domams_Nodomains. No sdf-cxe/communicafionself-care/communication yesyes<br>Papua New Guinea ‘Household<br>Phillipines Model FunctioningIncome andSurvey Expenditre Survey 20092016 WGSSNone, mild answermoderate. scale mieversesevere. extreme yes<br>Samoa (Census of P opalahon and Housing 2010 YesNo<br>Sdaaals PopulakonLabor Forceand SurveyHousmg Census 20092012 No, Some, Camotdo at all 45 do mainm am s. No comsdf-cre/communacaion,munication<br>Sri Lanka Population Census 2012 1=No difficulty 2= Difficult 3=Not a problem yes<br>Thadand National Disabdity Survey* 217<br>Timor-Leste Population and Housing Census 2010 4 dom ains. No self-care/communication yes<br>Vamuain Populationand Housing Census m09 No, Some, Camotdo at all 4 domams.No sdf-care/communicafion<br>Europe &Viemam Central Azim Population and Housing Census 2009 If yes. How difficult is it?: alittle. very 4 dom ains. No self-care/communication yes<br>Albania Population and Housing Census 2011 yes<br>Bosnia andHezegowna HouseholdLabor ForceBudgetSurvey Survey 20152011 No,Yes\Nomina,mgr difficultes, yes<br>Georgia Population Census 2013 1=no difficniies 2-has, mma 3-tas, yes<br>Sata Population Census 2014 yes<br>Latin America and Caribbean Papulahon Census 211 yes<br>Argentina ‘National Populahon C ensas 2010 YesNo 4 dom ams_No sdf-cxe/communacafion<br>Belize Population and Housing Census 2010 Answers arenotnumbered and there is yes<br>Bolvia Popolahon<br>Brazil Brazilian Longitudinaland HousmgStudy Censusof Aging (ELSI) 2015-2016212 Different categorical answers 5 dom ams_No sdf-care_ yesyes<br>Coloma Encuesta Nacional de calidad de ada (ENCV) Yeatty from 2012-2016 Yes/No yes<br>Encuesta Nacional de calidad de vida (ENCV) 2017 yes<br>Encursta Nacional de uso del tiempo (ENUT) 2012 YesNo yes<br>Encuesta de Transicion de la escuela al trabajo (ETET) 2013, 2015 "a little" instead of "som e" yes<br>Costa Rica ‘NatNat ional DisabilityDemographic Surveyand Health Survey 20 10,18 2015 None to extreme yes<br>DommacanJamaica R_ Popolatonand Housmg Census 2010 YesNo 4 domams_No sdf-cre/communacafion<br>Mexico ‘PapulakonPopulation Censusand Housing Census 201 10 YesNo yes<br>Encuesta Nacional de Hogares (ENH) 2016, 2017 4 dom ains. No self-care/communication<br>Panama Stady om Global Apcimy and Adult Health (SAGE) 2009, 2014 None, mild, moderate, severe, creme yes<br>Pau EncPop u esla t iona Nacsonal Census De Hogares (EN AHO) 20 15,10 2016 Yes\No 5 do mains.mams_ No s elf-cadf-cu re ._ yes<br>Encuesta Nacional de Programa Presupuestales Yearly from 2014-2017 Yes/No 5 domains. No self-care. yes<br>Encuesta Permanente de Empleo en Lima Metropolitana 2017, 2018 5 domams_No sdf-cue_ yes<br>Demographic and Health Survey 2013, 2014 Yes/No 5 domains. No self-care. yes<br>‘MiddleEast and North Afraa<br>Afghanistan Population Census 2011 Yes/No yes<br>Marocan Population Census 7014 Different catepncical answers yes<br>Tunisia Population Census 2014 Yes/No. if Y es. then WGSS answer scale yes<br>Turkey Population Consus O11 5 dom ams. No sdf-care_ yes<br>West Bank/Gaza Expenditure and Consumption Survey (ECS) 2009 Yes/No 5 dom ains. No self-care. yes<br>Scao-connmmic Conditions of the Palestmian Houscholids’ 2010 YesNo 5 domams_No sdf-cure_ yes<br>Population Census 2017 5 domains. No self-care. yes<br>Sub-Saharan Africa Soqo-connmmic Monitoong of the Palestinian 2013 No, Some, Great diffiity, Couldnot entirely 5 domams_No sef-care_ yes<br>‘Djibouti Engurte Djibouienne anpres desMenages<br>Ghana Study on Global Ageing and Adult Health (SAGE)(EDAM) 20172014 None, mild, moderate, severe, extreme 5 dom ams. No sdf-care yes<br>Malawi Population Census 218 yes<br>Rwanda Population Census 2012 Yes\No 5 domains. No self-care. yes<br>SouthAfiaa Popul a ndtioHousi n g Census 211 yes<br>LivingC onditions Survey (LCS) 2014 yes<br>Tanzania ‘National Household Travel Survey (NHTS) 2013 yes<br>Togo EnqurtePopulation and Housing Census 2012 5 dom ains. No com munication.<br>Uganda surla Transiion vers la Vie Actrve (ETV A) m12 5 dom ams. No communicahion.<br>Zambabwe Population Census 2014 4 domains. No self-care or communication<br>Note: * Has the Washington GroupPoverty,Extended Income,Set Consumption and Expendire Survey 2017 yes |<br><!-- End of picture text -->
Table 2 has the list of 46 countries, 68 data sets and 100 data set-years that have functional difficulty questions other than the WGSS. Such questions are, however, similar to the WGSS but with differences with respect to the answer scale, the domains, or the wording of the questions. The data sets in Table 2 vary greatly in how similar they are to the WGSS.

Regarding the answer scale, 16 data sets have a yes/no answer. Most of the data sets in Table 2 do not have all six domains of the WGSS. Many lack the self-care or the communication domain. Some data sets have domains beyond those in the WGSS (not shown in Table 2). Differences with the WGSS questions include, for instance, some reference to some _permanent limitation_ (e.g. Panama, Peru), and some added language. For instance, for South Africa (GHSM LCS, NHTS) the question pertaining to walking mentions _a kilometer_ and communicating with his/her usual language mentions _including sign language_ (emphasis added).

Results from Tables 1 and 2 are jointly represented in Figure 1, which is a map of countries with functional difficulty questions in their surveys or censuses. These could be the WGSS or other functional difficulty questions. Half of LMICs have functional difficulty questions in their surveys or censuses. In Europe/Central Asia and Sub-Saharan Africa, most countries do not have functional difficulty questions.

Appendixes 1 through 4 provide results for other types of disability questions noted in Section 2. Appendix 1 lists 15 countries and 24 data sets and 36 data set years that have ADL questions. Most countries with ADL questions are in Europe/Central Asia and Sub-Saharan Africa. As expected, surveys focused on older persons (e.g. CHARLS in China) have questions on ADL. While not shown in Appendix 1, there is heterogeneity in the ADL questions that are asked across countries with most often questions around physical basic activities such as walking over 100 meters, standing or sitting.

Appendix 2 includes 36 countries, 53 data sets and 76 data set-years with broad activity limitation questions. The most commonly found broad activity question asks about the person being limited in daily activities or in learning or in any economic activity due to a health problem in the past six months (not shown in Appendix 2). Some countries have several questions to get at broad activity limitations, including some recording the number of days the person was unable to carry out usual activities.

Appendix 3 has 50 countries, 81 data sets and 113 data set-years with a general disability question such as “does [Name] have a disability?” Often such questions are followed up with a question on the type of disability or the impairment the person has.

Appendix 4 has 43 countries, 54 data sets and 75 data set-years that have other types of disability questions such as belonging to the so-called disabled social group for Armenia.<sup>4</sup> In addition, some of the questions found in this list can be mixes of different types of questions such as impairments mixed with chronic health conditions in Tunisia, Bosnia, and Bulgaria. We have

> 4 Disability focused surveys (e.g. Philippines Model functioning Survey) were not covered in this table for other disability questions, but were covered in Tables 1 and 2 and Appendices 1, 2 and 3. Disability focused surveys typically have several types of other disability questions not beyond functional ADL, general and broad activity limitation questions.

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<!-- Start of picture text --> Reviewed in the study 133 100% 734 100% 1,297 100%<br>With each type of disability question:<br>- Washington Group Short Set (WGSS) 32 24% 4A 6% 61 5%<br>- Other functional difficulty questions 46 35% 67 9% 90 TM%<br>- Activity of Daily Living (ADL) questions 15 11% 24 3% 36 3%<br>- Broad activity limitation questions 36 27% 53 7TM% 71 5%<br>- General disability questions 50 38% 81 11% 113 9%<br>- Other disability questions 43 32% 54 7% 75 6%<br>With any disability question 100 75% 231 31% 350 271%<br>With functional difficulty questions (WGSS and/or other) 66 50% 111 15% 156 12%<br><!-- End of picture text -->

|Reviewedinthe study|133|100%|734|100%|1,297|100%|
|---|---|---|---|---|---|---|
|Witheachtypeofdisability question:<br>|||||||
|-WashingtonGroupShort Set(WGSS)|32|24%|4A|6%|61|5%|
|- Otherfunctional difficulty questions<br>|46<br>|35%<br>|67<br>|9%<br>|90<br>|TM%<br>|
|-Activity ofDailyLiving(ADL)questions|15|11%|24|3%|36|3%|
|-Broadactivitylimitationquestions|36|27%|53|7TM%|71|5%|
|- General disabilityquestions|50|38%|81|11%|113|9%|
|- Other disability questions<br>|43<br>|32%<br>|54<br>|7%<br>|75<br>|6%<br>|
|Withanydisabilityquestion|100|75%|231|31%|350|271%|
|Withfunctionaldifficultyquestions(WGSSand/orother)|66|50%|111|15%|156|12%|
This analysis is not without limitations. The list of data sets under consideration is not exhaustive and might have missed data sets due to questionnaire unavailability or unavailable translations. A similar review is needed for data sets focused on children and should be extended to high income countries.

Overall, the questions on disability found in surveys/census in the past decade are insufficient to ensure the global and systematic monitoring of progress called for by the 2030 Agenda for Sustainable Development to increase the availability of disaggregated data by disability (target 17.18). Although most LMICs have ratified the CRPD, there is much work to be done to fulfill Article 31 of the CRPD that States Parties undertake to collect appropriate information <mark>, including statistical and research data</mark> ” (United Nations 2006).

There is, however, progress compared to the situation up to the 1990s or early 2000s, when there was no internationally comparable disability data at all, let alone any internationally tested and comparable instruments. There are now some data that can be analyzed to inform disability policies at both national and international levels, notably with the surveys and censuses with functional difficulty questions listed in Tables 1 and 2. More research is needed to analyze such data sets.

At the same time, data collection needs on disability remain staggering: the results above show that there is still more work to do in fulfilling the data revolution that is needed to monitor the implementation of the 2030 Agenda for Sustainable Development as well as the CRPD.

National statistics agencies should use internationally tested functional difficulty questions in their population surveys and censuses (United Nations 2015). International agencies and donors have an important role to play in encouraging the collection of internationally comparable disability data. Functional difficulty questions should be included as part of core questionnaires, not as optional and changeable modules as currently in the DHS (Casebolt 2020). Two widely available data sources in LMICs, the global FINDEX and the LSMS of the World Bank, do not generally have questions on disability and if they do, they sometimes do not apply the best evidence for disability measurement (e.g. the 2012 LSMS for Haiti (ECVMA)). The systematic adoption of the WGSS in the core questionnaires of international surveys such as DHS, the global FINDEX, and LSMS would go some way in producing the data that are needed to assess whether people with disabilities are left behind or if they have proper opportunities and human rights.

5