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2 March 2011 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, 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, 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, Mozambique, the Netherlands, New Zealand, Norway, Oman, Pakistan, Occupied Palestinian Territory, Panama, Paraguay, Peru, Philippines, Poland, Portugal, Qatar, Romania, Rwanda, Saint Lucia, Serbia and Montenegro, Sierra Leone, Singapore, the Slovak Republic, Slovenia, South Africa, Spain, Sri Lanka, Sweden, Switzerland, Syria, Tanzania, Thailand, Tonga, Trinidad, 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, Costa Rica, Ecuador, Nigeria, Tunisia, 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 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, 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 Following the 8 th meeting a draft of the extended set of questions was revised and updated in preparation for the cognitive and field testing in South-East Asia. The primary focus of the 9 th meeting was the presentation and discussion of results from the cognitive tests and preliminary field tests results. 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. A workgroup was constituted to look more closely at the measurement of child disability and report back to the WG at the 10 th meeting. A workgroup was formed to look more closely at the development of a set of questions on environmental factors as they relate to the measurement of disability. 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. Report of the Tenth meeting: 3-5 November 2010 in Luxembourg: The 10 th meeting was hosted by Eurostat. The meeting was attended by 55 persons;
Objectives for the 10th WG meeting were to:
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). Additional goals for the meeting included:
Cognitive and Field Testing UNESCAP Prior to the 9 th WG meeting in Dar es Salaam, cognitive and field testing took place in six UNESCAP countries (Cambodia, Kazakhstan, Maldives, Mongolia, Sri Lanka and Philippines). Results from cognitive testing and preliminary field test results were presented at the 9 th WG meeting. The participants at the 9 th WG meeting agreed that further analysis of the field test data was required before final decisions could be made regarding the extended set of questions. Following the conclusion of the 9 th meeting, further analysis of the field test data was completed and the results were documented. Granada Group 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. Presentation of Cognitive and Field Results At the 10 th WG meeting in Luxembourg, details of the cognitive testing in Europe (Granada Group) and cognitive and field testing in South-East Asia (UNESCAP Group) of the proposed set of extended questions were presented for each of the 10 domains: vision, hearing, mobility, upper body, learning, cognition, affect, pain, fatigue, and communication. Based on the results presented for each domain, it was decided: whether there was sufficient evidence to adopt the question (with or without revision) or, in light of insufficient evidence, what next steps might be necessary to complete the domain. The final version of the extended set of questions was presented to UNECE (as part of the BI) for inclusion on the European Health Interview Survey (EHIS). Methodological Issues Concerning Surveys Methodological issues concerning the development of questions for children were first raised during the 8 th WG meeting in Manila. At the 9 th meeting in Dar, initial presentations were provided on this topic and it was decided that a workgroup be formed that would look more closely at the issue. As a follow up to the 9 th meeting, representatives from the United Kingdom and Canada presented information regarding the methodological challenges related to measuring disability in children and the different measurement schemes that have been previously used. The representative from the United Kingdom identified several purposes for collecting disability data for children, including: monitoring the health of the total population; social provisions and allocation of resources; and equalization of opportunity. He indicated that there were health, economic, and social advantages related to collecting disability data on children. Collecting disability data for children could allow for early intervention of health issues, improved work and school environments, as well as improved social cohesion and overall quality of life improvements. Although it is clearly stated in the UN Convention on the Rights of People with Disabilities that disability data should be collected for children, it is difficult to determine which government agencies should be responsible for developing the related national policies. Childhood disability can be covered by ministries of health, education, or social affairs, as well as other government ministries. Different strategies used to define and measure child disability were presented, including McConachie’s work related to participation of disabled children (McConachie et al., 2006). Four categories of participation were identified by McConachie:
The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) was also examined as a way of defining disability among children. The ICF-CY takes into account all of the participation categories identified by McConachie . Also, the clinical utility of the ICF-CY has been tested through questionnaires completed by participants with access to clinical populations of children aged 0-18. The representative from the United Kingdom determined that the ICF-CY could be used as a framework for developing instruments for epidemiological research. CASP: Child and Adolescent Survey of Participation (Bedell, 2004), the LIFE-H: Assessment of Life Habits (Fourgeyrollas et al., 1998), and the Activities Scale for Kids (Young et al., 2000) were also identified as successful schemes for measuring child disability when used in combination. It was concluded that national surveys on child disability can be carried out successfully. The problems concerning measuring child disability have been recognized and the solutions are known, but widespread. A synthesis of all the work done so far needs to be done in order to arrive at a feasible strategy. The ICF-CY should be used as the overarching topology to bring everything together in a meaningful way. The WG representative from Canada presented on behalf of Susan Stobert, former representative from Canada and chair of the Children’s Disability Workgroup. A review of the articles in the UN Convention and existing policies related to collecting disability data for children were given. Several reasons why measuring disability for children is different than for adults were identified including:
There are few examples of national disability surveys geared towards children. There are several reasons for this: disability is both harder to define for children than adults, and is seen as relatively rare in children, and children do not always fit into the mandate of ongoing disability surveys. National Statistical Agencies may believe that children’s disability should be measured in other places, such as schools or health care settings. A comparison was then provided of several national surveys that included disability questions for children. A brief overview was given of the questions related to disability asked for children in the following data collections:
WG representatives in attendance were then encouraged to begin discussing how the children’s disability workgroup should move forward. It was determined that the workgroup was ready to begin developing a question set designed to measure disability for children. The recommended question set would be presented at the 11 th meeting in Bermuda. With the recent retirement of Susan Stobert, a new chair was sought and the WG representatives from Italy agreed lead the workgroup. Representatives who would like to participate in the children’s disability workgroup were asked to contact the WG Secretariat. Presentation on the development of a cross-culturally useful extended set of questions to measure environmental factors was given by Barbara Altman. The three approaches to environmental measurement by researchers that have been examined over the past 10-15 years were described. These three approaches include observational descriptions of environmental characteristics, personal experiences with environmental factors and personal evaluation of the experience with the environmental factors. The combination of measures capturing personal experience with environmental factors and the evaluation of those experiences give an indicator of the interaction with the environment that is one representation of disability. The presenter indicated that the objective with the environmental extended set is not to describe the environment observationally, nor to measure the interaction that the individual experiences, but to capture just the personal experiences with the home and local environment on a general basis in order to develop cross-cultural measures of environment. The further development of this extended set will take that approach and will be vetted by the committee and proposed questions will be presented at the next Washington Group meeting. Representatives who would like to participate in the workgroup dealing with environmental factors were asked to contact the WG Secretariat. Recent developments on disability statistics in the European Union A representative from Eurostat provided background and a brief overview of recent developments related to disability statistics in the European Union (EU). Two policies were identified that influenced the collection of disability statistics in Europe:
Subsequently, an overview was given of e xisting European health surveys/modules that include questions on disability. The European Union Statistics on Income and Living Conditions (EU-SILC) is an annual survey that includes questions from the Minimum European Health Module (MEHM), as well as questions related to unmet medical and dental care needs. The EU-SILC is disseminated through Eurostat’s website. The European Health Interview Survey (EHIS) is conducted every 5 years in 21 European countries (18 EU member states). The same translation protocol is followed and the same questions are used by each country. The EHIS contains four modules and approximately 130 questions. At the Berlin Workshop held 30 th September and 1 st October 2010, an agreement was reached that the BI/WG extended set of questions would be considered for inclusion on 2014 EHIS. An ad-hoc module on the 2002 European Union Labour Force Survey (LFS) contained questions related to the employment of disabled people. Questions related to disability will also be included in 2011. The goal isto obtain information for comparison between the labour market situations of disabled and non-disabled people. The 2011 LFS ad hoc module will contain questions on the following topics:
Eurostat is currently working to development of the European Survey on Health and Social Integration (ESHSI). The goal is to develop a survey module that deals with participation of people with disabilities in society. The module was first introduced in June 2008 and originally planned to be part of the EHIS. Pilot tests were conducted in 10 EU member states in 2009. The module was revised in October 2010. The ESHSI is scheduled to be implemented in 2012 in all EU member states. The EU hopes to continue collecting information related to disability on their surveys. The Task Force on Disability Statistics (TFDS) was set up in 2010. The group includes experts from 10 EU member states, as well as representatives from disability organizations and has held two formal meetings (January/June 2010). Both the European Commission and TFDS support the idea of conducting the ESHSI every 5 years, as an independent disability survey. In addition, the EHIS would continue to be conducted every 5 years with next round taking place in 2014. Country Reports A summary of the annual reports on national activities related to disability statistics was provided. Annual reports were completed by 47 countries. The information provided included usage of the WG Short Set of questions in the most recent round of censuses. The primary representatives from 10 countries indicated that the short set of questions was included in their recent census round. For countries indicating the short set of disability questions was not used in the recent census round, the reasons for not using the questions included:
Country Experiences Additional country presentations were provided by the WG representatives from Argentina, Israel, and Brazil. Presentations were given followed by discussion on the following topics:
Documents for Consideration A document drafted by members of the WG Secretariat and Steering Committee was circulated among the delegates for review and comments. The document, entitled The Measurement of Disability: Recommendations for the 2010 Round of Censuses, addresses the issues of the determination of disability using the WG short set of questions and the establishment of a single cut-off that would allow for international comparability of disability prevalence rates. Of three possible cut-offs presented, the participants agreed that the following cutoff be used to define the populations with and without disabilities for the purpose of computing values for the tables appended in the document and suggested by UNSD: The sub-population disabled includes everyone with at least one domain that is coded as a lot of difficulty or cannot do it at all. Countries are encouraged to use this cut off for international comparability, but are also encouraged to investigate and report other disability prevalence rates based on other cut-off levels that would also reflect ‘milder’ levels of functional difficulty in a population or rates for multiple difficulties. Updates on other Washington Group and collaborative activities The WG continues to collaborate with the UNECE, WHO, and Eurostat on the BI. The development of an extended set of questions for use ascomponents of population surveys, as supplements to surveys or as the core of a disability survey has been a collaborative effort of both the WG and BI. The testing of these questions in South-East Asia has been supported by UNESCAP. The WG Secretariat has contacted representatives at the World Bank to regarding funding for future WG activities. A proposal was submitted to the World Bank for funding to replicate projects similar to the UNESCAP project in other regions. The World Bank had not responded to the proposal at the time of the 10 th meeting. Country representatives were encouraged, however, to contact their World Bank regional offices, regional banks, and health ministries regarding support and funding for disability data collection activities within their countries and regions. Key agreements of the 10 th meeting and next steps: Significant progress has been made on the development of a final set of extended questions. The proposed question set was presented to UNECE for inclusion in the European Health Interview Survey (EHIS). It is anticipated that these questions will be cognitive and field tested in other regions in 2011. Two workgroups have been established and workgroup chairs have been assigned. One workgroup will look into the development of measures of child disability and the other will assess the measurement of environmental factors. The WG agreed to its work plan for 2011. 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 workgroups include:
Objectives for the 11 th WG meeting:
Governance issues The 11 th WG meeting will be held November 2011 in Bermuda. 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 Associate Director for Science National Center for Health Statistics 3311 Toledo Road, Room 7207 Hyattsville, MD 20782 (USA) (Phone) 301-458-4500 (Fax) 301-458-4020 (Email) JMadans@cdc.gov Reporting to the UN Statistical Commission
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