Where is the best place to add the Short Set to a census or survey?

This module of six questions is best situated either at the beginning of a survey questionnaire (together with the demographic information collected on household family members) or towards the beginning of a section that deals with health information. It is recommended that the module not be added on at the end of the questionnaire.

Do the questions refer to the use of assistive devices?

The intention with the Short Set questions is to record, with the exception of seeing and hearing, difficulties people have with unaccommodated functioning (without the use of assistive devices or assistance).

The WG wants to be able to identify difficulties in functioning that may put a person at risk of limited or restricted participation. That risk of restricted participation – in the absence of accommodations – is ‘disability’ as defined by the UN Convention on the Rights of Persons with Disability (CRPD).

The domains of seeing and hearing are handled differently. In many cultures, both glasses/lenses and, to a lesser extent, hearing aids are ubiquitous and in most cases the use of these devices, especially glasses, is able to correct the difficulty almost completely. For this reason they are considered ‘within the skin’ or a part of the person. If, for example, the WG were to ask about difficulty seeing without the use of glasses, the resultant prevalence would be extremely high and would not identify a population at risk of participation restriction. However, in places where glasses or hearing aids are not common, the clause ‘even when wearing glasses’ can be omitted.

Can I change the answer categories?

Disability is not a Yes/No dichotomy but describes a dynamic and complex relationship between a person, the environment in which they live and their ability to participate in society on an equal basis with others.  The aspects of functioning that are captured by the six questions are also not dichotomies; functioning in each of these domains exists on a continuum.

A question with a Yes/No response option forces the person answering to self-identify as having the difficulty or not. It is better to offer a range of responses as in the WG questions. The four answer categories recommended by the WG describe a continuum of functioning from: no difficulty to cannot do at all. The continuum can be visualized like this:

The distribution above creates four points equally distributed among the continuum that allows respondents to easily discriminate among options. The recommended cut-off (at a lot of difficulty) identifies those with the intended level of difficulties. 

Can I ask a subset of the six questions? I don’t have the resources to add all 6 questions to my census/ survey, what should I do?

A comprehensive measure to determine disability includes all six domains of functioning: seeing, hearing, walking/climbing steps, remembering/concentrating, self-care and communication.

As noted in the 3rd revision of the Principles and Recommendations for Population and Housing Censuses (UNSD: https://unstats.un.org/unsd/statcom/doc15/BG-Censuses.pdf) four domains of functioning: seeing, hearing, walking/climbing steps, and remembering/concentrating are considered the most essential in determining disability status from census data in a way that would allow for international comparison. In circumstances where it is impossible for reasons of time or space to ask all six questions, these four domains should be included as the essential minimum. 

Furthermore, it has come to our attention that for reasons related to culture, in certain countries enumerators have had difficulty asking the self-care question. In such circumstances, the omission of this question is permissible.

To illustrate the net effect of asking six versus four questions, data from the 2013 U.S. National Health Interview Survey (NHIS) show that disability prevalence among those 18 years and older (weighted) using all six Short Set questions is: 9.5%. Omitting the questions on self-care and communication reduces the prevalence to: 9.3%. Disability is not a uniquely unidimensional or single domain phenomenon. Among those with functioning difficulties (over six domains) in the 2013 NHIS sample, 27% have multiple difficulties. It could further be demonstrated that 92% of those with self-care difficulties and 78% of those with communication difficulties were included among those identified as having difficulties in the other four domains of functioning (that is, they were not explicitly excluded but omitting the question makes it impossible to estimate the population with this type of functional difficulty and to look at the impact on participation).

Do I need to include the clause: “…even if wearing glasses” and “even if using a hearing aid”?

In a few countries we have learned that hearing aids are non-existent. In these cases it would be appropriate to omit the clause “…even if using a hearing aid.”

On the other hand, to indiscriminately omit the clause “…even if wearing glasses.” would grossly inflate disability prevalence since anyone who uses glasses or lenses to correct a visual impairment would answer affirmatively (many with serious difficulties).  Only in places where glasses are close to non-existent should the clause be removed.

If time and space permit, it may be preferable to split the two sensory questions, as in the Extended Set:

Do you wear glasses?

Yes

No

If Yes: Do you have difficulty seeing even if wearing your glasses?

If No: Do you have difficulty seeing? 

Why don’t the WG questions use the word “disability”?

‘Disability’ is a word whose meaning can vary not only across cultures but among people in the same culture.  Moreover, in some cultures the term is associated with shame and/or stigma. In order to avoid casting the questions in a negative frame or light and to reduce response variability due to differential understanding of the term, more neutral language needs to be used.  In addition, rather than ask directly about disability per se, the focus of the questions is on functioning. The domains of functioning covered are both basic and universal; they are common to all countries and cultures and evidence has shown that they are recognized by people in different languages.  The use of the term disability in the questionnaire or in interaction between the interviewer/enumerator and the respondent will reintroduce variability in how the term is understood including introducing stigma and can reduce or eliminate the validity of the questions set.

Is it possible to modify the way questions are administered?

It is recommended that the response options be read aloud as part of each of the six questions as follows:

Do you have difficulty walking or climbing steps? Would you say:

 

  1. No, no difficulty
  2. Yes, some difficulty
  3. Yes, a lot of difficulty
  4. Cannot do it at all. 

 

If the six questions are asked of multiple persons in the household, the answer categories do not need to be repeated for each question once the respondent becomes familiar with them and responds using the appropriate terminology; however, it is generally useful to repeat the answer categories every 2 or 3 questions.

The Demographic and Health Surveys (DHS) program has recently adopted a disability module that operationalizes the WG short set of questions. In order to maintain consistency with other DHS modules and the format of the DHS in general, a modification was implemented in the administration of the questions – not the content. Rather than the formulation recommended by the WG above, the DHS uses the following formulation:

I would like to know if (NAME) has difficulty walking or climbing steps. Would you say that (NAME) has no difficulty walking or climbing steps, some difficulty, a lot of difficulty, or cannot walk or climb steps at all?

Both the content of the question and the response options remain the same. This is essential in producing comparable disability statistics cross-nationally.  The possible effects of this modification are being evaluated.

How should the questions be administered?

It is recommended that the response options be read aloud as part of each of the six questions as follows:

“Do you have difficulty walking or climbing steps? Would you say:

No, no difficulty

Yes, some difficulty

Yes, a lot of difficulty

Cannot do it at all” 

Respondents may become familiar with the answer categories after the first few questions.  In this case, the recommendation to repeat the categories can be relaxed.  This is most likely to occur when the questions are asked of multiple people in a household. If respondents provide responses using the required answer categories, the categories do not need to be repeated after every questions. They should be repeated as soon as the respondent does not use the required category (e.g., responds ‘yes’) or after the second or third question. Enumerators will require training in when it is appropriate to not read the answer categories.

What is the purpose of collecting data on disability?

Three main purposes for the collection of disability data have been identified:

  1. Monitor the Population: to understand the scope of disability in a population for evaluating policies and interventions designed to address disability in the population.
  2. Service Provision: seeks to identify those with specific needs in order that services are designed and implemented to meet those needs. Interventions might be general – servicing the entire population (i.e., universal design), or specific - targeted for people more specific needs (e.g., wheelchair users). Addressing service provision requires more extensive information than monitoring the functioning of the population, and cannot be served by censuses.
  3. Equalization of Opportunities: assesses whether persons with disability are participating in social and economic life at the same level  as persons without disability, This is accomplished by disaggregating population data by disability status to determine if important outcomes (e.g., access to education and employment) are different for people with disabilities compared to their non-disabled peers.

Does the Short Set apply to all age groups?

The six WG questions were designed for a census context (general population 5 years of age and above) where the collection of disability data in a country may be otherwise very limited. The WG has acknowledged that disability among children, due to the circumstances of child development and transition from infancy through adolescence, is not adequately covered by these questions and disability prevalence using the WG Short Set among those 5 – 17 years of age will be underestimated. In particular, children with difficulties associated with developmental or psychosocial disabilities may be missed. However, in the absence of other measures and other data collection exercises, these questions will provide an indication of child functioning in the domains covered for the population 5 – 17 years of age.

The WG and UNICEF collaborated on the development of the Child Functioning Module (CFM) which is the preferred tool for collecting information on children and adolescents with disabilities. For more information follow this link to Child Functioning Question Set.

Can the Short Set be answered by a proxy respondent?

Ideally, the questions should be answered by the individual in question (self-report) with the exception of those who are not capable of responding themselves. However, in a census setting and for some types of surveys, it is common to have a primary respondent report for all other household members and this is acceptable in these context. In self-report situations, no one should be excluded because they cannot respond on their own (for example due to difficulty hearing, communicating, or an intellectual disability). The choice of a proxy respondent can be important and should be carefully considered before embarking upon the survey interview.

How do I train enumerators?

Training enumerators in how to use the WG questions is crucial and should ideally be followed up by ongoing supervision in the field. Key points to emphasize in training include:

  • The word ‘disability’ is not mentioned in the introductory statement or the questions and should NOT be mentioned at all during data collection.
  • The reasons why WG focuses on ‘functioning’ as opposed to ‘disability’, noting that the questions are not diagnosis, disease or condition-based, but instead focus on difficulties that anyone might experience.
  • The use of screening questions (e.g. ‘Do you have a disability?’) or introductory statements (e.g. ‘The next set of questions are about disability’) will affect responses to the subsequent WG questions. Screening questions or statements should not be used under any circumstances, whether in a census or in a household survey.
  • Questions need to be asked exactly as they have been worded. If questions are explained to participants using inappropriate or negative language, this may influence the way participants respond. This includes the response categories. These should be kept as is, and definitely not changed to yes/no responses.
  • Enumerators should never skip questions or fill in the answers based merely on their observations (e.g. if they observe that respondent is using a wheelchair): they must ask all the questions to the participant.

What if I need more detailed information on disability and functioning?

  • Where more detailed information is required, the WG Extended Set of questions (WG-ES) can be used.
  • The WG-ES includes information on upper body functioning; psychosocial difficulties (anxiety and depression); pain and fatigue; and the additional information in certain domains of functioning both with and without the use of assistive technology/aids.

Will the WG Short Set capture all people experiencing difficulty in functioning?

  • The WG-SS will identify most, but not all, people with disabilities
  • WG-SS questions were not designed to measure all aspects of difficulty functioning that people may experience, but rather those domains of functioning that are likely to identify a majority of people at risk of participation restrictions. These include difficulties seeing, hearing, walking or climbing stairs, remembering or concentrating, with self-care, and difficulty communicating.
  • Those with psychosocial difficulties that do not impact cognition, communication or self-care will be under-reported. This issue is addressed in the extended set.

How are people with disability identified by the WG-SS questions?

The WG-SS question response categories capture a range of severity in the difficulty experienced. Multiple disability scenarios can be described depending on the domain(s) of interest and the choice of severity cut-off. There is more than one way to capture disability through the application of this set of core questions; resulting in not one but several possible population prevalence estimates that will vary in both size and in composition of the group identified as having a disability.

The WG recommends that the following cut-off be used to define the populations with and without disabilities for the purpose of computing prevalence and differentials in participation for international reporting and cross-national comparability:

The population disabled includes everyone with at least one domain that is coded as a lot of difficulty or cannot do it at all.

Countries using the WG short set of questions should not feel restricted to only producing data based on the above cut-off. Data can be presented by individual domains of functioning, and at several levels of severity from very mild (some difficulty) to very severe (unable to do at all). For example, discovering that in rural regions of the country participation restrictions tend to kick in at lower levels of activity limitations than in urban areas could be suggestive that barriers to participation are more significant in areas with poorer infrastructure.

How do I translate the questions into my local language?

An accurate translation that conveys the context or conceptual meaning (rather than a literal translation) of the WG questions is crucial.

Guidelines for translating the questions can be found here, and protocols for cognitively testing translated versions of the questions can be found here. 

A few translated versions of the WG questions are available here

We are continuing to expand the number of languages into which this tool has been translated. If you cannot find a translated version in your local language, contact the WG Secretariat – there may be a version on file.

What is the purpose of the introductory statement? Can it be changed?

The introductory statement, “The next questions ask about difficulties you may have doing certain activities.” was included for the purpose of transitioning from topic to topic in a census context. The census format includes a small number of questions, usually on a variety of different topics, with topics changing quickly. The purpose of the introductory statement is to inform the respondent that the next set of questions will focus on a new topic. For example, if these questions followed a series of questions on another subject, sanitation for example, the introductory statement would provide a much-needed transition to new subject matter. In a larger survey, where this module might follow other health-related questions, and where the context is already established, the introductory statement could be dropped if the flow of the questionnaire is not adversely affected. It is also possible to change the wording of the introduction, as needed, as long as the word ‘disability’ is not used. 

Examples of alternatives to the introductory statement:

  • The next questions ask about difficulties you may have in doing different activities.
  • Now I am going to ask you some questions about your ability to do different activities.

Can I change or adapt the questions to meet my needs?

  • In order to collect internationally comparable data, it is important that the WG question be used without any changes to the wording of questions, order of questions, response categories, and cut-off points for classification of disability.
  • There are very limited exceptions to this rule. For example, in countries where hearing aids are not available, leaving the hearing aid clause off the hearing question is allowed.
  • Before making any modification consult the WG secretariat. Often the issues that arise in adapting to a particular country context can be addressed in how the questions are translated.
  • Detailed information about this topic can be found in the translation FAQ page, but if you have any doubt please get in touch with the Secretariat for advice. 

Can I use a screening question before the WG questions?

Evidence shows that single screener questions do not adequately identify the population of interest.  Most screeners are of the form “Do you have a disability?” with yes/no answer categories.  As noted above, the use of the term disability has very negative effects.  Questions of this type identify only a portion of those experiencing functional problems. They equate disability with a medical problem (disability lies within the person) and by forcing a respondent to make a choice between affirming disability which in some cultures is associated with stigma and discrimination. Some screeners do not use the term disability but ask about medical conditions.  While respondents can describe their difficulty doing activities, they often cannot report on their conditions. For example, respondents may not be aware of their conditions due to lack of medical care. The search for a one or two question screener that will identify the population of interest and results in no false negatives has been universally unsuccessful.  The WG-SS represent the fewest number of questions that can be used to identify the population with disabilities.

How is the WG Short Set meant to be used?

  • The WG-SS was not designed to be used in isolation. They should be used in conjunction with other measurement tools, i.e. include the WG-SS within a larger survey or registration form to enable disaggregation of other measures (employment status, educational attainment, etc.) by disability status.
  • It can be used in a census or survey format,
  • The focus on functioning and the brevity of the tool mean that it can be rapidly and easily deployed in a variety of settings.

Who has used the WG questions and how do I see their results?

Every year in preparation for the annual meeting, the WG asks member countries to report their own use of WG questions sets: the WG-SS, WG-ES or CFM. Results of this accounting are presented at the annual meeting under the title: Summary of Annual Activities Related to Disability Statistics. Therein are overviews of country activities (not data) on use of WG disability questions.

The WG does not maintain a database of survey or census data results for countries that have used the WG questions.  The data is owned and maintained by the countries or researchers who conducted the data collections.  However, we have occasionally conducted exercises where have asked our membership to complete and submit table shells with data collected using the WG questions and/or other disability measures.  The results from one of these exercises is to be found in a chapter in: An analysis of international census/survey data using the short set of disability questions developed by the Washington Group on Disability Statistics, In: International Measurement of Disability: Purpose, Method and Application – The work of the Washington Group on Disability Statistics. B. Altman (ed). Springer, Social Indicators Research Series, Volume 61:255-304, 2016.

More recently (2018), the WG conducted an exercise to assess the feasibility of countries to disaggregate selected SDG indicators by disability status.  The report containing results from that assessment, which includes some country data, can be found on the WG website at the following location: http://www.washingtongroup-disability.com/wp-content/uploads/2018/11/Disagregation-Data-Report_F4.pdf

Other potential sources of disability data:

·World Health Organization (WHO) / World Bank (WB) World Report on Disability: https://www.who.int/disabilities/world_report/2011/report.pdf

·United Nations Flagship Report on Disability and Development: https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2018/12/UN-Flagship-Report-Disability.pdf

·United Nations Disability Statistics Data Portal: https://unstats.un.org/unsd/demographic-social/sconcerns/disability/statistics/

·Disability Data Review: A collation and analysis of disability data from 40 countries

https://www.disabilitydataportal.com/fileadmin/uploads/lcdp/Documents/rep