The Washington Group on Disability Statistics

Introduction

In June of 2001, the United Nations (UN) International Seminar on the Measurement of Disability recommended that principles and standard forms for indicators of disability be developed for use in censuses. There was a broad consensus on the need for population based measures of disability for country use and for international comparisons. This work was greatly needed because data on disability, especially in developing countries, wasscarce and often of poor quality. Furthermore, international comparability was often lacking, even among developed countries. As a result, the Washington Group on Disability Statistics (Washington Group) was formed to address the urgent need for high quality, comparable disability statistics. The main purpose of the Washington Group is, therefore, the promotion and co-ordination of international co-operation in the area of health statistics focusing on disability measures suitable for censuses and national surveys. The major objective is to provide basic necessary information on disability which is comparable throughout the world. Other agencies, such as WHO, UNICEF, UNECE and UNESCAP and the World Bank, also have interests in improving the quality of disability statistics. Fruitful collaborations have been established to further shared objectives. While considerable progress has been made, significant efforts are required to incorporate the collection of disability statistics into ongoing statistical systemsand to improve the quality and the comparability of the information obtained. This need is heightened given the data needs and reporting requirements identified in the UN Convention on the Rights of Persons with Disability and those being proposed for the Post-2015 Sustainable Development Goals.

Washington Group on Disability Statistics
The Washington Group has sought to foster international collaboration, and in particular, to insure that the efforts of the group are broad-based and inclusive of voices from developing countries from every region of the world. Thus, representatives of national statistical authorities, Disabled People’s Organizations (DPO), and other international organizations participate in the Washington Group. Current members of the Washington Group include 118 national statistical offices, 7 international organizations, 6 organizations that represent persons with disabilities, the United Nations Statistics Division (UNSD), and other UN affiliates.

The Washington Group has held thirteen annual meetings since its inception: 1) Washington, DC, USA–2002; 2) Ottawa, Canada–2003; 3) Brussels, Belgium–2004; 4) Bangkok, Thailand–2004; 5) Rio de Janeiro, Brazil–2005; 6) Kampala, Uganda–2006; 7) Dublin, Ireland–2007; 8) Manila, Philippines–2008; 9) Dar es Salaam, Tanzania–2009; 10) Luxembourg–2010; 11) Southampton, Bermuda–2011; 12) Bangkok Thailand–2012; and 13) Amman, Jordan–2013. The fourteenth Washington Group meeting is scheduled to be held in October 2014 in Argentina. Annual meetings are rotated through major geographic regions to facilitate participation, especially of the developing countries.

Between 2008 and 2013, the Washington Group has participated in or facilitated several training workshops that have introduced Washington Group products (WG SS, WG ES(F), WG ES(C)), and helped to build capacity locally and nationally in understanding and measuring disability for censuses and surveys.

Washington Group Short Set on Functioning: WG SS

A major accomplishment of the Washington Group has been the development, testing and endorsement of a short set of questions that can be used on censuses, sample-based national surveys, or other data collection formats, for the primary purpose of informing policy on the full inclusion of persons with disability into civil society. The World Health Organization (WHO) International Classification of Functioning, Disability, and Health (ICF) has been used as the basic framework for the development of the question set. At the sixth annual meeting of the Washington Group in Kampala, Uganda, test results from 15 countries (Argentina, Brazil, Congo, Egypt, Gambia, India, Kenya, Lesotho, Mauritius, Mexico, Paraguay, Philippines, Tanzania, Uganda and Vietnam) were reported and the short set of questions on disability wasendorsed by the 23 countries and 5 international agencies in attendance. The set comprises questions on six core functional domains: seeing, hearing, walking, cognition, self care, and communication. These questions were based on the model of disability inherent in the WHO’s ICF with a particular emphasis on international comparability. Testing procedures designed for the evaluation of internationally comparable question sets were developed for the use of the Washington Group. The testing procedures include both qualitative (cognitive testing[1]) and quantitative methodologies. Training and technical assistance has been provided to countries in conducting the Washington Group tests and, more generally, on disability data collection methods. The short question set is accompanied by a description of its technical properties, and methodological guidance is available on implementation and applicability to all population subgroups. Based on information obtained from the country reports submitted by the primary Washington Groupcountry representatives between the ninth and thirteenth Washington Group meetings, 35 countries indicated that the short set of questions, or some variant, were included in the recent census round(See Annex 1).While countries continue to report disparate means for the collection of disability data and consequently disparate prevalence rates, with few exceptions, those that use the Washington Groupas intended have reported disability prevalence rates that are comparable.

Washington Group/UNESCAP/Budapest Initiative Extended Set on Functioning: WG ES-F

The Washington Group has also developed an extended set of functioning questions (WG ES-F) to be used as a component of population surveys, as a survey supplement, or as the core of a disability survey. The extended set also uses the ICF as a conceptual framework. In collaboration with UNESCAP, the Washington Group conducted standardized cognitive testing of the extended question set in nine countries (Maldives, Sri Lanka, Philippines, Mongolia, Cambodia, Kazakhstan, Canada, United States, and South Africa) and standardized field testing of the extended question sets in six countries (Maldives, Sri Lanka, Philippines, Mongolia, Cambodia, and Kazakhstan).

In February 2011, an expert group meeting was held in Bangkok to review the results of a second round of cognitive testing of the Washington Group/UNESCAP extended question set to measure disability through surveys. The objectives were to discuss the results of the second round of cognitive testing of the question set on disability, in particular on the domains of communication, hearing, affect, pain and fatigue; further train senior statisticians from Asia-Pacific on the skills required to undertake the analysis of cognitive interviews; and discuss future areas of work on disability data collection and measurement.

The Washington Group extended set of questions was adopted by the Washington Group after the 10th meeting held in Luxembourg in November 2010. The extended question set is accompanied by a description of its technical properties, and methodological guidance is given on implementation and applicability to all population subgroups.

In collaboration with the Budapest Initiative (BI), a final version of a question set on health state (a subset of the extended set on functioning) was submitted to Eurostat for inclusion on the EHIS.

The Washington Group is continuing to develop the extended set of disability questions on functioning. The question set was added to the US National Health Interview Survey (NHIS) beginning in 2010. During the past year, individual domain analyses were conducted on 2010 and 2011 NHIS data. Analyses addressed how best to combine information from several questions per domain and develop standards for determination of cut-points. All analyses will be compiled and presented in a document describing the properties of individual domains of functioning.

UNICEF/Washington Group Module on Child Functioning and Disability: WG ES-C

In 2009, the Washington Group began work on the development of a set of questions on child disability for use in surveys. This coincided with the plans of UNICEF to revise the existing data collection module used in the Multiple Indicator Cluster Survey (MICS) programme ( The new UNICEF/Washington Group questionnaire on child functioning and disability reflects current knowledge about child disability and can produce internationally comparable data. The questionnaire covers children between 2 and 17 years of age, and assesses speech and language, hearing, vision, learning (cognition and intellectual development), mobility and motor skills, emotions and behaviors. A draft of the proposed UNICEF/Washington Group module was discussed and revised during a three-day expert consultation at UNICEF in June 2012. The consultation meeting brought together 35 experts from around the world on a variety of topics ranging from pediatric development to survey design. Since then, the questionnaire has undergone cognitive testingin: Mumbai, India (as an independent project carried out by ADAPT – formerly The Spastics Society of India); USA at the National Center for Health Statistics (NCHS); Belize in association with UNICEF Belize, the National Statistical Office, and Care International; in Oman (by the Central Statistical Office); and Montenegro (see video available here So far, field testing has taken place in Cameroon, Italy and Haiti, and is planned to take place in more countries. UNICEF and the Washington Group are also working on the development of a manual to support the implementation of the module. The manual will include all the necessary background documentation that will accompany the module, including tabulation plans, templates for reporting, instructions for interviewers and training material. The new module and the manual for its implementation are expected to be ready for actual data collection and use by countries in the second half of 2014.

UNICEF/Washington Group survey Module on Environment School Participation: WG ES-P

UNICEF and the Washington Group are working on the development of a survey module on the measurement of environment and school participation. The aim is to measure the barriers/facilitators to education by children with/without disabilities. This module will complement the module on child functioning and disability (described above). Together, they will provide a comprehensive measurement of disability assessing functional limitations as well as their interaction with the environment. The module will cover four areas: attitudes, accessibility within the school, getting to school and affordability. Once finalized, the draft module will undergo cognitive testing and field testing. It is expected to be ready for actual data collection and use by countries in early 2015.

UNICEF/WG Regional capacity building workshops and Technical assistance on the measurement of child disability

UNICEF and the Washington Group intend to develop training material and conduct workshops on the measurement of child disability. The training material is intended to be used in technical workshops as well as for individual learning. The workshops are meant to take place in all 7 UNICEF regions (Latin America and the Caribbean, West and Central Africa, East and Southern Africa, Middle East and North Africa, Central and Eastern Europe and the Commonwealth of Independent States (CEE/CIS), East Asia and the Pacific, and South Asia). The purpose of the workshops will be to build/strengthen local capacity for data collection. Training will be provided to National Statistics Offices, other Government staff and local researchers on concepts, models and measures of disability, survey design, data processing, data analysis, data dissemination and data use. The workshops are expected to take place in 2015.

UNICEF and the Washington Group also intend to establish a mechanism of technical assistance for countries that want to implement the module on child functioning and disability, as well as the module on school participation, including technical assistance during the design of the questionnaire and methodology, training of interviewers, supervision of field work and support for the analysis and presentation of the data.

Applicability of the Washington Group Questions to the UN Convention on the Rights of Persons with Disability and the post-2015 Sustainable Development Goals

The Washington Group chose to develop questions that would address a specific aspect of the disablement process, the issue of whether persons with disability participate to the same extent as persons without disabilities in activities such as education, employment or family/civic life, in other words, the equalization of opportunities; which, as mentioned above, is one of the general principles listed in Article 3 of the Convention and the focus of Article 5 (Equality and Non-discrimination). It is also particularly relevant to the collection of data for policy purposes outlined in Article 31 (Statistics and data collection) and will facilitate the monitoring of participation in cultural life, leisure, and recreation (Article 30), and work & employment (Article 27).

In order to address the equalization of opportunities for persons with disabilities it is necessary to identify persons who are at greater risk than the general population of experiencing limited participation in society. The recommended short set of questions will identify the majority of the population with difficulties in functioning in basic actions; difficulties that have the potential to limit independent living or social integration if appropriate accommodation is not made.

This indicator, coupled with other information collected through the Census or survey on for example, employment, education, or family & social life, can then be used to compare the levels of participation between those with disability and those without – and thereby assess equitable access to opportunities as mandated by the UN Convention. For example, data on difficulty in performing basic actions can be cross-classified with a measure of employment to identify the proportion of persons with and without disability who are employed. If policy interventions are initiated to enhance workplace accommodations, the effect on employment of persons with disability can be determined. In addition to employment, it will be important to collect data on a variety of forms of participation, such as education, housing, transportation, social and health services, in addition to aspects of family, cultural and social life. From a theoretical perspective, if opportunities have been optimized then participation should be equal between persons with and without disability. A trend analysis would also show improvements among those with disabilities over a period of time.

Ratification and endorsement of the UN Convention on the Rights of Persons with Disability are the initial steps to establishing awareness and compliance at the national level. The United Nations has also requested that means be sought to develop a set of indicators intended to monitor the implementation of the Convention. The Washington Groupshort set of six questions, when incorporated in Censuses or surveys, can provide baseline information that can fulfil the requirements for monitoring. By standardizing these questions it will be possible to provide comparable data cross-nationally for populations living in a variety of cultures with varying economic resources; comparable data that can be used to monitor compliance with the UN Convention and post-2015 Sustainable Development Goals.

The way forward…

The approach to disability measurement advocated by the Washington Groupthrough the short set of questions has been recommended by the UNSD in their Principles and Recommendations for Population and Housing Censuses (2nd Revision). (See: Section VI-8: Disability Characteristics pages 178-183, and Tabulations on Disability Characteristics pages 292-294; available online at: third revision of this document is currently under development and similar recommendations have been drafted by Conference of European Statisticians in preparation for the 2020 census round. The incorporation of the Washington Group questions sets into national statistical systems will provide the information that is necessary to monitor the UN Convention on the Rights of Persons with Disabilities and the Post-2015 Sustainable Development Goals and to provide a fuller understanding of disability worldwide. Institutionalizing the collection of disability data will assure that comparable and quality information on persons with disabilities will be available when needed for country use and for international initiatives.

The Washington Group disseminates its work products globally through the world-wide web ( and scientific publications.

ANNEX 1:

Thirty-five countries have indicated that they intend to use, or have used, the Washington Groupshort set or some variant in the most recent (2010) census cycle:

Argentina / Oman
Aruba / Palestine
Bangladesh / Paraguay
Brazil / Peru
Chad / Philippines
Costa Rica / Poland
Croatia / Qatar
Fiji / Rwanda
Israel / St Maarten
Italy / South Africa
Ivory Coast / Sri Lanka
Kazakhstan / Tanzania
Kenya / Tunisia
Malawi / Turkey
Mexico / Uganda
Mongolia / Vietnam
Mozambique / Zimbabwe
Netherlands

Forty-seven countries have indicated that the Washington Groupshort set was included on previous censuses, national surveys, disability modules or pre-tests

Argentina / Iran / Peru
Armenia / Israel / Philippines
Aruba / Ivory Coast / Poland
Bangladesh / Japan / Qatar
Bermuda / Jordan / Rwanda
Brazil / Kazakhstan / Samoa
Burundi / Kenya / St Maarten
Canada / Latvia / South Africa
Chad / Malta / Sri Lanka
Croatia / Mexico / Thailand
China / Mongolia / Turkey
Egypt / Mozambique / Uganda
France / Oman / United Arab Emirates
Fiji / Palestine / United States
France / Panama / Zambia
Hong Kong SAR / Paraguay

Independent researchers using the Washington Groupquestions

National surveys of living conditions among people with disabilities in:

•Botswana

•Lesotho

•Mozambique

•Swaziland

•Zambia

Equitable: EU7 project run by Trinity College (Dublin) in collaboration with SINTEF (Norway) and Universities in:

•Stellenbosch (South Africa)

•Sudan

•Malawi

•Namibia

Nationally representative surveys:

•Afghanistan

•Darfur (Sudan)

•Democratic Republic of the Congo

•India

•Malawi

•Nepal

•Sierra Leone

•Taiwan

[1]The purpose of cognitive testing is to determine the quality of the questions being asked and ascertain the cultural understanding of the underlying concepts by the respondents.