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WASHINGTON GROUP ON DISABILITY STATISTICSPurpose The main purpose of the Washington Group on Disability Statistics is the promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary information on disability throughout the world. More specifically, the Washington Group aims to guide the development of a small set or sets of general 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. The second priority of the Washington Group is to recommend one or more extended sets of survey items to measure disability, or principles 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 general measure(s). The World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) has been accepted as the basic framework for the development of the sets. All disability measures recommended by the group, general or extended, will be accompanied by descriptions of their technical properties and methodological guidance will be given on their implementation and their applicability to all sections of the population. The Washington Group will disseminate work products globally through the World Wide Web. Year organized 2001 Participants Current country representatives include (from national statistical offices): Albania, Argentina, Australia, Austria, Armenia, Barbados, Belgium, Bermuda, Bolivia, Brazil, Cambodia, Canada, Chile, China (Hong Kong Special Administrative Region, Macao Special Administrative Region, and Mainland), Columbia, Cuba, Czech Republic, Democratic Republic of Congo, Denmark, Egypt, Finland, France, Gambia, Ghana, Greece, Guatemala, Hungary, India, Iran, Iraq, Ireland, Israel, Italy, Ivory Coast, Japan, Jordan, Kenya, Latvia, Lebanese Republic, Lesotho, Lithuania, Malawi, Mauritius, Mexico, Micronesia, Mongolia, New Zealand, Norway, Occupied Palestinian Territory, Panama, Paraguay, Peru, Philippines, Poland, Romania, Serbia and Montenegro, Sierra Leone, Slovenia, South Africa, Spain, Saint Lucia, Sweden, Syria, Tanzania, Thailand, The Netherlands, Turkey, Tonga, Trinidad, Uganda, United Kingdom of Great Britain and Northern Ireland, United States of America, Venezuela, Viet Nam, Zambia, and Zimbabwe. 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 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 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, September 29- October 1, 2004 Major outcomes of the 4 th 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, October 10-13, 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). Detailed analyses of the pre-test data were presented at the meeting, however as there was much more analytical work that can be done that would be informative, the methodological workgroup merged with the data analysis workgroup to address three specific issues:
The workgroup on extended measures was charged with self-organizing in order to accomplish their work, and drafting a position paper specific to developing the first extended set with a purpose of equalization of opportunities. The paper was to include a plan and approach (blueprint) for carrying out development of the extended set including the purpose, rationale, and justification for the extended set as well as the issue of international comparability. The group was charged with adding questions on the existing domains and adding domains as appropriate to assess equalization of opportunities. The group was to review and select existing questions and pre-test the question set if time permits. Seventh meeting : Dublin, September 19-21. 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 6th meeting. A large part of the seventh meeting was dedicated to a discussion of work being done on the extended set of disability questions for surveys and survey modules. A proposal to develop an extended question set for the purpose of assessing equalization of opportunities was presented by the extended sets workgroup. The Extended Sets workgroup will:
Furthermore, the workgroup will:
Report of the Eighth meeting: October 29-31, 2008 in Manila, Philippines The eighth meeting was hosted by the Philippine National Statistical Coordination Board (NSCB) and the Philippine National Statistics Office (NSO). The meeting was attended by 54 persons;
Objectives for the 8 th WG meeting were to: Present a proposal for extended set questions.
Objectives for the eighth meeting emanated from work presented at the seventh meeting. The Extended Set workgroup was charged with developing an extended question set (or sets) for use in surveys and survey modules with the intended purpose of assessing equalization of opportunities. It was agreed that as a first step this workgroup would address expanding upon the set of domains already covered in the short set, adding supplementary questions within domains (cause, age at onset, duration), begin a discussion on how best to capture environmental factors and explore different ways to measure participation. Development of the extended set/s was to be done in collaboration with the Budapest Initiative, Eurostat and UNESCAP. Extended Sets Workgroup A small working group consisting of members from the Washington Group (WG) and Budapest Initiative (BI) met for 3 days in July 2008 at the National Center for Health Statistics (NCHS) in Hyattsville, MD. The goal of this meeting was to draft a proposed set of extended questions to be presented at the 8 th WG meeting in the Philippines. The initial approach taken by the workgroup was to expand on the 6 domains (Vision, Hearing, Cognition, Mobility, Self Care, and Communication) addressed in the WG Short Set. The focus was to look at questions that already existed and determine how the WG work was related to the work of other groups: Budapest Initiative (BI), Eurostat, and UNESCAP. At this meeting, a “Matrix”, designed as a framework for the development of the extended questions, was presented. At the 8 th WG meeting in Manila representatives from the workgroup provided the outcomes from the July meeting including an overview the “Matrix” and the proposed set of extended questions. The presentation included outlining the rationale and framework used to develop the extended question sets. Group work and discussions at the 8 th meeting provided feedback on the issues/problems with each extended set question and/or answer categories that were identified. As part of the presentation and discussion each of the proposed questions was reviewed in detail. The strengths and limitations of asking each question and corresponding answer categories as it was proposed were debated. In many cases, the conclusion was that multiple versions of the questions should be tested during cognitive and field testing. Cognitive and Field Testing Cognitive testing and field testing of the proposed extended sets are expected to take place in early 2009. The cognitive and field testing would be done in collaboration with UNESCAP. Prior to cognitive testing, interviewer training would take in Bangkok (early 2009). For the cognitive testing phase, participating countries would be asked to conduct approximately 20 interviews. A small group would meet following the cognitive testing to conduct preliminary analysis of the results. Results from the cognitive tests would be used to inform the field testing. A sample of approximately 1,000 interviews is recommended for the field testing. Children over the age of 5 years old would be included in the sample. Proxy interviews would be conducted for anyone under the age of 18 years of age. The main objectives of the field testing are to test:
The results from both the cognitive and field tests would be documented and presented at the Methodological Issues concerning surveys Methodological issues were raised concerning special populations, specifically the use of proxy respondents, and the development of questions for children and institutionalized populations. 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 during the field testing of the proposed extended sets questions. Four documents drafted by members of the WG Secretariat and Steering Committee were circulated among the group for review and comments. The first two documents were developed to introduce the WG to Disabled Peoples’ Organizations and National Statistics Offices. A separate paper was drafted for each audience. The third document concerns Monitoring the UN Convention on the Rights of Persons with Disability. The fourth document is a draft paper on utilizing the WG Short Set of Questions. Participants were encouraged to review the documents and submit any comments or questions to the WG Secretariat. Copies of the documents mentioned can be obtained by contacting the WG Secretariat. Updates on other Washington Group and collaborative activities UNESCAP : Representatives from the UNESCAP Statistics Division provided a presentation on the improvement of disability measurement in support of BIWAKO Millennium Framework for Action and the Regional Census Programme. The framework was designed to promote an inclusive, barrier-free and rights-based society for people with disabilities in the Asian and Pacific region. The ESCAP project originated in response to policy initiatives that call for better disability statistics and a unified regional approach to data collection and analysis. Plans to address country specific needs for support would include:
ESCAP would work in close partnership with the Washington Group and other organizations including the United Nations Statistics Division (UNSD), United Nations Economic Commission for Europe (UNECE), World Health Organization (WHO), Budapest Initiative and National Statistics Offices (including Australia and Philippines). The project hopes to raise awareness through regional and in-country workshops. Another goal is to develop regional standards for pilot testing and analyzing results. Key activities of the project include:
ESCAP will serve as the managing partner. The Steering Committee will oversee the design and implementation. The work will be completed by task teams headed by the leading experts in the field. The countries involved in the pilot test would present a joint report of their analysis at the 9 th meeting of the WG. The information obtained from the pilot testing will be used to inform WG extended question set development. Budapest Initiative : The Budapest Initiative has agreed to work in collaboration with the WG in areas of the extended question sets that overlap. A BI taskforce meeting is scheduled in February 2009. During this meeting, results from the cognitive testing may be presented. World Bank : Due to changes in personnel at the World Bank there has not been much activity recently regarding the WG. Country representatives were encouraged to contact their World Bank regional offices regarding support and funding for disability data collection activities within their countries and regions. WHO-FIC Network – Washington Group Bridging Task Group : A bridging group has been formed, comprised of members of the Functioning and Disability Reference Group (FDRG) and WG. The main objective of the Group is to propose means of cooperation and knowledge transfer between the groups, so as to add value to each other’s work, promote shared goals, and avoid undesirable overlaps or inconsistencies. The group has primarily met via teleconference. There has been one face to face meeting in Quebec City in August 2008. Country Reports A summary of the annual reports on national activities related to disability statistics was provided. Annual reports were completed by 43 countries. The information provided included usage of the WG Short Set of questions in recent data collection activities and plans for their use in the upcoming round of censuses. Country Experiences Presentations were given followed by discussion on the following topics:
Potential Funding Opportunities A n overview of the European Union's (EU) 7th Framework Programme was provided and the opportunities it may offer in furthering WG objectives through funded research. The 7 th Framework Programme is the ma in financial tool through which the European Union supports research and development activities covering almost all scientific disciplines. Potential benefits to the WG:
Participation Potential for WG:
As an existing United Nations City Group with a broad membership in all regions of the world and established network, the WG could act as a catalyst to country inclusion and the co-ordination of the project. Conclusion: The group decided to take some time to think about the participating in the program. The idea will be revisited in the future. WG Participants were asked to send comments to the WG Secretariat. Key agreements of the 8 th meeting and next steps :
Objectives for the 9 th WG meeting :
Governance issues The 9 th WG meeting will be held October 2009 in Tanzania. 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/citygroup.htm). WG Points of contact: Washington Group Secretariat ( NCHS, U.S.A.) Cordell Golden Mitch Loeb Jennifer Madans |
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