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12 March 2012 WASHINGTON GROUP ON DISABILITY STATISTICSPurpose: 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. More specifically, the Washington Group set a goal of developing a short set of disability measures, suitable for use in censuses, sample-based national surveys, or other statistical formats, for the primary purpose of informing policy on equalization of opportunities. A second priority is to recommend one or more extended sets of survey items to measure disability, or guidelines for their design, to be used as components of population surveys or as supplements to specialty surveys. These extended sets of survey items are intended to be related to the short set of disability measures. 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 sets. All disability measures recommended by the group, short or extended, are accompanied by descriptions of their technical properties, and methodological guidance is given on their implementation and their applicability to all population subgroups. The Washington Group disseminates its work products globally through the world-wide web and scientific publications. Year organized: 2001 Participants: Representatives of national statistical offices, international organizations, and non-government organizations including international disability organizations have participated in the last 11 meetings. Current country representatives include (from national statistical offices): Albania, Antigua and Barbuda, Argentina, Armenia, Aruba, Australia, Austria, Bangladesh, Barbados, Belgium, Bermuda, Bolivia, Botswana, Brazil, Bulgaria, Burundi, Cambodia, Canada, Chad, Chile, China, Hong Kong Special Administrative Region of China, Macao Special Administrative Region of China, Columbia, Côte d’Ivoire, Costa Rica, Croatia, Cuba, Curacao, Cyprus, Czech Republic, Democratic Republic of the Congo, Denmark, the Dominican Republic, Egypt, Estonia, Fiji, Finland, France, Gambia, Germany, Ghana, Greece, Guatemala, Hungary, India, Indonesia, Iran, Iraq, Ireland, Israel, Italy, Jamaica, Japan, Jordan, Kazakhstan, Kenya, Kuwait, Kyrgyz Republic, Lao, Latvia, Lebanon, Lesotho, Lithuania, Luxembourg, Malawi, Maldives, Malta, Mauritius, Mexico, Micronesia, Mongolia, Morocco, Mozambique, the Netherlands, New Zealand, Norway, Oman, Pakistan, Occupied Palestinian Territory, Panama, Paraguay, Peru, Philippines, Poland, Portugal, Qatar, Romania, Rwanda, Saint Lucia, Saint Maarten, Saudi Arabia, Serbia and Montenegro, Sierra Leone, Singapore, the Slovak Republic, Slovenia, South Africa, Spain, Sri Lanka, Sweden, Syria, Tanzania, Thailand, Tonga, Trinidad, Tunisia, Turkey, Tuvalu, Uganda, United Arab Emirates, United Kingdom of Great Britain and Northern Ireland, United States of America, Uruguay, Venezuela, Viet Nam, Zambia, and Zimbabwe. In the past, the Bahamas, Comoros, Ecuador, Nigeria, and the Turks and Caicos Islands also participated. Current non-government organizations include: European Disability Forum, Rehabilitation International, Inter-American Institute on Disability, EUROSTAT, International Labor Organization, Organization for Economic Cooperation and Development, National Disability Authority-Ireland, Inter-American Development Bank, International Development Project, World Bank, World Health Organization, United Nations Children’s Fund, United Nations Economic and Social Commission for Asia and the Pacific, United Nations Economic and Social Commission for Western Asia, United Nations Economic Commission of Europe, and United Nations Statistics Division. Governmental Organizations of Persons with Disabilities: Coordenadoria Nacional para Integração da Pessoa Portadora de Deficiência (CORDE) in Brazil, Secretaria Nacional para la Integración de las personas con Discapacidad (SENADIS) in Panama, and Disabled Organization for Legal Affairs and Social Economic Development (DOLASED) in Tanzania. Past meetings/major outcomes: First meeting: Washington, D.C., 18-20 February 2002 It was agreed that: 1) it is important and possible to craft a short set/s of internationally comparable disability measures; 2) short and long set(s) of measures that are inter-related are needed; 3) the ICF model will be used as a framework in developing disability measures; and 4) census questions are the first priority. Second meeting: Ottawa, 9-10 January 2003 A link was established between the purpose/s of a short measure on disability and aspects of measurement. A conceptual matrix was developed linking the purpose of a short disability measure with conceptual definitions and question characteristics. An empirical matrix was developed evaluating the characteristics of short set(s) of disability measures currently in use according to the dimensions of the conceptual matrix. Both matrices helped the WG to identify gaps in disability measurement. Third meeting: Brussels, 19-20 February 2004 Since disability is multidimensional, it is not possible to ascertain the single “true” disabled population. Different purposes are related to different dimensions of disability or different conceptual components of disability models. Equalization of opportunities was selected as the purpose for which an internationally comparable short disability measure would be developed. A workgroup was designated to generate a draft set of questions related to this purpose. In addition, two other workgroups were formed to propose methods for implementing the short set and to propose an approach for developing extended measurement sets related to the short set. Finally, a plan for WG governance was adopted. Fourth meeting: Bangkok, 29 September – 1 October 2004 Major outcomes of the 4th WG meeting were: 1) conceptual agreement on a draft set of questions for the general disability measure, but wording revisions were required prior to pre-testing; 2) formation of a new workgroup operating in conjunction with a consultant to develop six implementation protocols for pre-testing the short set of disability measures; 3) begin development of the first extended measurement set; and 4) formation of a new workgroup on methodological issues. Fifth meeting: Rio de Janeiro, 21-23 September 2005 Revisions were suggested for the short measurement set, the accompanying rationale, and the implementation protocols. A new workgroup was formed to plan and implement analyses of the WG pre-tests. All results pertaining to the six WG questions will be considered by the new workgroup including the WG sponsored pre-tests, the WHO/ESCAP test, and other testing activities. Sixth meeting: Kampala, 10-13 October 2006 Based on the outcomes of the pre-tests, the WG endorsed the six question set for use in censuses. The set comprises questions on four core functional domains (seeing, hearing, walking, and cognition) as well as two additional domains desired by member countries (self care and communication). The methodological workgroup and the data analysis workgroup merged to continue the detailed analysis of the pre-test data. The workgroup on extended measures was charged with drafting a position paper on the first extended set. Seventh meeting: Dublin, 19-21 September 2007 The workgroup on the short set addressed the use of the short set as a screener and presented an alternative (optional) question on upper body function. The combined workgroup on data analysis and methodological issues provided further analyses of the pre-test data presented at the 6 th meeting. A large part of the 7 th meeting was dedicated to a discussion of work being done on the extended set of disability questions for surveys and survey modules. The extended set workgroup would coordinate its work with the work of the Budapest Initiative, Eurostat, and UNESCAP. Eighth meeting: Manila, 29-31 October 2008 Work on the extended set continued by expanding upon the set of domains already covered in the short set, and adding supplementary questions within domains (cause, age at onset, duration). Development of the extended set/s was to be done in collaboration with the Budapest Initiative, Eurostat, and UNESCAP. Methodological issues were raised during the 8 th meeting concerning the development of questions for children and institutionalized populations and the use of proxy respondents. WG representatives from Canada and France volunteered to look at the work being done in the areas of children and institutionalized populations, respectively, within their regions and prepare reports to be presented at the 9 th WG meeting. The group is hopeful that some of the issues related to use of proxy respondents will be raised during the field testing of the proposed extended sets of question. Ninth meeting: Dar es Salaam, 7-9 October 2009 The primary focus of the 9 th meeting was the presentation and discussion of results from the cognitive tests and preliminary field tests results in South-East Asia. For each domain the question set used in the cognitive test was presented, followed by a discussion of the results and how these results impacted on the development of a field test instrument for that domain. Preliminary results from the field tests in two of the participating UNESCAP countries ( Maldives and Sri Lanka) were presented. The overall conclusion was that further analysis of the field test data was required before a final decision could be made regarding the extended set of questions. Methodological issues that were raised earlier concerning the development of questions for children and institutionalized populations were revisited. It was concluded that it was beyond the scope of the WG to address the issue of dealing with institutionalized populations at that time. The issue will be revisited in the future. Two w orkgroups were constituted to look more closely at the measurement of child disability and the development of a set of questions on environmental factors as they relate to the measurement of disability. The workgroups were to report back to the WG at the 10 th meeting. It was strongly recommended by the delegates, particularly those from African countries, that projects similar to the one funded by UNESCAP in the Asia and Pacific region, also be established in other regions. It was further suggested that funding assistance be sought from UNSD, regional commissions, other UN agencies, and regional development banks to meet this request. Tenth meeting: Luxembourg, 3-5 November 2010 The 10 th meeting of the Washington Group on Disability Statistics (WG) was held in conjunction with the Budapest Initiative Task Force on Measuring Health Status (BI). The primary focus of the meeting was to review results obtained from the 2010 round of cognitive and field testing of the extended set of disability questions that took place in Europe (Granada Group) and South-East Asia (UNESCAP). In collaboration with the 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 European Health Interview Survey (EHIS). Issues of methodology with respect to special populations such as children with disabilities were revisited. A presentation on the development of a cross-culturally useful extended set of questions to measure environmental factors was also given. Based on the presentations at the 10 th meeting, it was determined that the workgroups were ready to begin developing question sets designed to measure disability for children and environmental factors. The proposed question sets would be presented at the 11 th meeting in Bermuda. Report of the Eleventh meeting: 14-16 November 2011 in Southampton, Bermuda: The 11 th meeting was hosted by the Bermuda Government, Department of Statistics. The meeting was attended by 40 persons;
Objectives for the 11 th WG meeting were to: Present results of country reports using WG short set questions in surveys / censuses
Use of the WG Short Set The Washington Group is monitoring the use of the short set in the 2010 round of Censuses. Information on questions used and resulting estimates of disability was requested from the Washington Group. Preliminary analyses of the country results were presented at the 11 th meeting. Of particular interest was the impact of modifications that had been made by certain countries to the question set and/or the response categories. Discussion focused on how these findings could be used to better inform countries about the collection of disability information and the potential impact of question wording. Delegates agreed that a paper that provided summary information on the results received to date and an analysis of the effects of question wording would be beneficial to countries. This project was adopted as part of the 2012 work plan. WG Extended Set on Functioning The extended set of disability questions on functioning were added to the 2010 US National Health Interview Survey (NHIS). Preliminary findings were presented at the 11 th meeting. Much of the discussion focused on how the data could be used to better understand the question set and to provide analytic guidance. Delegates agreed that more in depth analysis would be useful. The US National Center for Health Statistics, along with interested Washington Group members, will continue analysis of data from the US NHIS. It was also agreed that a paper would be prepared for publication on analysis of the NHIS data. Update on the expansion of cognitive and field testing in the Middle East region In 2010 and 2011, representatives from the WG Secretariat have participated in several training workshops in the Middle East region. An update was provided on the recent training activities that have taken place. A training workshop for question evaluation and cognitive interview methodologies was held in Muscat, Oman in October 2010. The objectives were to inform researchers of, and train them in, current cognitive interview methodology and question evaluation techniques with respect to the Washington Group extended set of disability questions. The workshop was hosted by the Ministry of National Economy and was attended by 15 representatives from NSOs of 9 Arab countries ( Syria, Jordan, Tunis, Sudan, Oman, Palestine, Egypt, Yemen & Morocco). In December 2010, the Arab Institute for Training and Research in Statistics (AITRS) sponsored a disability seminar in Damascus, Syria. The specific goals were to transfer knowledge with representatives from NSOs from Arab countries on disability definition and measurement. The seminar was attended by 22 representatives from NSOs from 12 Arab countries ( Syria, Jordan, Bahrain, Tunis, Sudan, Iraq, Oman, Palestine, Libya, Egypt, Morocco and Yemen). In May 2011, representatives from the Secretariat participated in a training workshop in Sharjah, United Arab Emirates (UAE) sponsored by AITRS. The aim was to train representatives from NSOs from Arab countries in understanding and operationalizing disability measures developed by the Washington Group. The training workshop was attended by 35 representatives from NSOs of 15 Arab countries (Jordan, UAE, Bahrain, Tunis, Djibouti, Saudi Arabia, Sudan, Syria, Somalia, Iraq, Oman, Kuwait, Lebanon, Egypt, and Morocco), and the UN Relief and Works Agency (UNRWA). During February-April 2010, cognitive testing of the extended set of question took place in the United States and six European countries ( France, Germany, Italy, Portugal, Spain, and Switzerland). The Granada Group (named after the location of the group’s first meeting) focused on 7 domains from the WG extended set of questions: affect (anxiety and depression), pain, fatigue, cognition, communication, upper body, and learning. A total of 100 cognitive interviews were collected by the Granada Group. In April 2010, an analysis meeting was held in Rome. During the analysis meeting preliminary findings for each domain were presented and discussed. Through their discussions the group established an analytic direction for each domain. Methodological Issues Concerning Surveys Two work groups -- on the development of an extended set for measuring disability among children and youth, and for measuring the environment as it relates to functioning – presented the work accomplished in the previous year. The children’s work group, chaired by members from the Italian National Institute for Statistics (ISTAT), presented a well-received proposal for the development of the extended set for children including a conceptual framework and examples of how the framework could be operationalized. A delegate from UNICEF attended the meeting and presented information on the survey items used in the Multiple Indicator Cluster Surveys (MICS). A formal collaboration was arranged between the Washington Group and UNICEF to work on the development of the extended set of questions on child disability. The work group investigating environmental factors, chaired by the US National Center for Health Statistics, also presented their work consisting of a conceptual framework and related questions sets. In addition, a session was held on how participation could be addressed more directly. The work group was encouraged to continue work in both these areas. Updates on other Washington Group and collaborative activities The Washington Group continues to collaborate with the UNECE, WHO, and Eurostat on the Budapest Initiative (Task Force on the Measurement of Heath Status, also known as BI). The final version of the BI’s question set on health state was adopted in November 2010 at the joint Washington Group-BI meeting in Luxembourg and subsequently presented to Eurostat (as part of the Budapest Initiative) for inclusion in the next round of the European Health Interview Survey (EHIS). 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. Discussions have continued with the UNESCAP to explore the development of an implementation project. The Washington Group continues to seek the support of the World Bank in continuing the development of disability measures. Discussions continue with the World Bank in matters of common interest and in attempts to secure funding for further activities in the testing and development of extended sets of questions on disability in other regions. Discussions have taken place with the UN Department of Social and Economic Affairs regarding the use of the Washington Group questions for the purpose of monitoring the UN Convention on the Rights of Persons with Disability. New contacts have been established in the Middle-East with the Arab Institute for Training and Research in Statistics (AITRS). A more formal collaboration was arranged between the Washington Group and the United Nations Children’s Fund (UNICEF) in the development of the extended sets of disability questions on child disability. In June 2011 the World Report on Disability was launched by the WHO and the World Bank. In order to enhance the availability, comparability and quality of data on disability the World Report proposes several recommendations that reflect directly on the work of the Washington Group:
A representative of the Washington Group participated in the world release of the Report at the UN in New York (June, 2011) and the US release in Washington DC (September, 2011). The Washington Group is committed to addressing the recommendations of the Report. Key agreements of the 11 th meeting and next steps: The WG agreed to its work plan for 2012. Among other items, the plan delegates specific responsibilities to working groups that meet throughout the year (via email and telephone conferences). Next steps for the steering committee and workgroups include:
Governance issues The 12 th WG meeting is tentatively scheduled to be held October 2012 in Beijing, China. In keeping with UN guidelines, issues of gender bias and other potential sources of bias will be a consideration of all WG work. Products: Proceedings from the meetings (presentations and papers), reports to the UN Statistical Commission, final meeting reports, and information on upcoming meetings can be accessed through the Washington Group website, currently hosted by the National Center for Health Statistics, U.S.A. (http://www.cdc.gov/nchs/washington_group.htm). Points of contact: Washington Group Secretariat (NCHS, U.S.A.) Cordell Golden Mitch Loeb Julie Weeks Jennifer Madans Reporting to the UN Statistical Commission
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