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5 March 2013
WASHINGTON GROUP ON DISABILITY STATISTICS
The main objective of the WG 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. The aim is to provide basic necessary information on disability which is comparable throughout the world. For the primary purpose of informing policy on equalization of opportunities, the WG has developed, tested internationally, and adopted a short set of disability measures suitable for use in censuses, sample-based national surveys, or other statistical formats.
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 all questions sets. The disability measures recommended by the WG, both short and extended, are accompanied by descriptions of their technical properties, and methodological guidance is given on their implementation and their applicability to population subgroups. The WG disseminates its work products globally through the world-wide web and scientific publications.
Representatives of national statistical offices, international organizations, and non-government organizations including international disability organizations have participated in the last 12 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, Sint 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 work group was designated to generate a draft set of questions related to this purpose. In addition, two other work groups 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 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 work group 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 work group 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 work group 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 work group 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 work group and the data analysis work group merged to continue the detailed analysis of the pre-test data. The work group on extended measures was charged with drafting a position paper on the first extended set.
Seventh meeting: Dublin, 19-21 September 2007
The work group 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 work group 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 work group would coordinate its work with the work of the Budapest Initiative, Eurostat, and UN ESCAP.
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 UN ESCAP 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 work groups 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 work groups 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 UN ESCAP 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 (UN ESCAP). 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 work groups 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.
Eleventh meeting: Southampton, 14-16 November 2011
The Washington Group began to monitor the use the WG Short Set in national data collections (censuses and surveys). Preliminary analyses of data provided by countries using the WG Short Set 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. It was agreed to continue analyses of the data provided and to prepare reports for publication on the use of the WG Short Set (and other measures of disability) and the impact of wording changes to the standard set.
Preliminary findings from analyses of the WG extended set of disability questions using data obtained from the US National Health Interview Survey (NHIS) were also presented at the meeting. The discussion focused on how the data could be used to better understand the question set and to provide analytic guidance. Results from further analyses were to be presented at the 12 th WG meeting.
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 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 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 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 environmental factors work group was encouraged to continue work in both these areas and present an update at the next meeting.
Report of the Twelfth meeting: 23-25 October 2012 in Bangkok, Thailand:
The 12th meeting was hosted by the Statistics Division of the United Nations Economic Commission for Asia and the Pacific (UN ESCAP). The meeting was attended by 40 persons;
Objectives for the 12th WG meeting were to:
Use of the WG Short Set
The WG continues to monitor the collection of disability data internationally, and annually requests detailed information from representatives from National Statistical Offices covering survey periodicity, sample size and frame, mode of data collection, language(s) used, the actual questions operationalized with response options and finally prevalence data. At the 11 th meeting in Southampton, preliminary results of analyses of the country data were presented. Results from further analysis of the country data were presented at the meeting the 12 th meeting in Bangkok.
In all, 34 countries were represented in the analysis. The data received from the WG’s request was supplemented with information provided by countries participating in a disability seminar sponsored by the Arab Institute for Training and Research in Statistics (AITRS) in December 2010. Also, data was received from two countries ( Zambia and South Africa) independent of the WG’s annual request.
We have found that while countries have reported disparate disability prevalence rates; with few exceptions, those that use the WG as intended ( Israel [census/2008]; Aruba [census/2010]; Zambia [survey/2006]; and Maldives [survey/2009]) have reported disability prevalence rates that are comparable: 6.4%, 6.9%, 8.5%, and 9.6% respectively. Again it can be noted that prevalence results generated from surveys generally produce higher rates than those generated from a census. This is in part due to the fact that surveys provide a different context for the questions than does a Census and are unrestricted in the number of questions that can be included.
The delegates agreed that continued analysis of the country data, focusing on a comparison of sub-populations, demographic categories and results using different cut-offs for prevalence, would be useful. It was also agreed that an analysis of data provided for children collected using the WG-SS could be used to inform the development of the Module of Child Disability and Functioning. A paper is currently being prepared for publication that reports on the use of the WG SS (and other measures of disability) and the impact of wording changes to the standard set using the data collected internationally. Results from the additional analyses would be presented at the 13 th meeting.
WG Extended Set on Functioning
The extended set of disability questions on functioning (ES-F) were added to the US National Health Interview Survey (NHIS) beginning in 2010. Preliminary findings from analysis of the 2010 NHIS data were presented at the 11 th meeting. Results from further analysis of the WG ES-F using data from the 2011 NHIS were presented at the 12 th meeting. The ES-F items were examined by domain, individually, and by various socio-demographic categories. The coding choices in each domain and the cut points for definitions of disability prevalence were discussed. The delegates agreed that more in depth analysis would be useful and that a formal work group, led by the representatives from the US National Center for Health Statistics (NCHS), would be established. The work group will develop an analytic plan and continue analysis of the ES-F data collected on the 2011 NHIS. Delegates were encouraged to contact the WG Secretariat to join the work group and provide suggestions for tables to present at the 13 th meeting.
The session also included a discussion on analytic guidelines and strategies for data collected using the ES-F. Representatives from NCHS provided a presentation focusing on the use of a mixed-method approach to assess validity and cross-subgroup comparability. Results from the 2010 NHIS using the ES-F questions related to pain were presented.
Methodological Issues Concerning Surveys
The work group investigating environmental factors and participation, chaired by the US National Center for Health Statistics, presented their work consisting of a conceptual framework and related questions sets. The presentation was followed by a discussion on the challenges related to developing a question set and the next steps for the work group. The delegates agreed that the work group should continue to move forward with the development of a question set, reducing the scope to focus on one service area or basic activity. The work group will provide a status report of its progress at the next WG meeting.
The work group on the development of an extended set for measuring disability among children and youth (ES-C) presented the work accomplished in the previous year as part of its collaboration with the United Nations Children’s Fund (UNICEF). Representatives from the children’s work group, chaired by members from the Italian National Institute for Statistics (ISTAT), provided a review of the conceptual framework for question development and a proposed set of questions. An update on the Multiple Indicator Cluster Surveys (MICS) was presented on behalf of UNICEF, as well as, a presentation by a representative from ADAPT (formerly the Spastics Society of India) on the cognitive testing of the module on child functioning and disability in India. Following the presentations, the delegates discussed proposed question set by domain and suggested revisions were provided to work group. The delegates agreed that the work group will continue to collaborate with UNICEF and present the proposed final set of questions at the next meeting.
A summary of the annual reports on national activities related to disability statistics was provided. Annual reports were completed by 42 countries. The information provided included usage of the WG Short Set of questions in the most recent round of censuses. The primary representatives from 11 countries indicated that the short set of questions was included in their most recent census round. The Washington Group has also been informed that the question set has been pre-tested or added to surveys in more than 30 countries.
The WG representatives from Botswana and Maldives provided presentations on their countries’ experiences collecting disability data. The representative from Botswana provided a brief presentation focusing on the government’s role in improving the collection of data on disability. The representative from Maldives provided a brief overview of the 2009 Maldives Demographic Health Survey (MDHS) and presented preliminary results from analysis of data collected using the WG SS questions.
Updates on other Washington Group and collaborative activities
A representative from UN ESCAP’s Social Development Division provided an overview of the Incheon Strategy, a framework designed to guide action on disability in the Asian-Pacific region over the next decade. The Incheon Strategy is based on the principles of the UN Convention on the Rights of Persons with Disabilities and includes the following goals:
The Incheon Strategy is scheduled to be officially launched at the UN ESCAP High-level Intergovernmental Meeting on the Final Review of the Implementation of the Asian and Pacific Decade of Disabled Persons (2003-2012) on October 29 through November 2, 2012 in Incheon, Korea.
A representative from the World Health Organization (WHO) provided an overview of the World Report on Disability, launched in June 2011, and the Model Disability Survey scheduled to be launched in 2013. Both projects were joint collaborations between WHO and the World Bank. The World Report was a resulted from a World Health Assembly resolution aimed to:
Over 380 people from 70 different countries contributed to the report, including academics, policy-makers, professionals, disability rights advocates and non-governmental organizations. Several recommendations were made in the World Report including:
To support the implementation of recommendations of the World Report on Disability, WHO and the World Bank began working on the development of the Model Disability Survey. An overview of the question development process and the timeline for implementation were presented. The final question set is expected to be released by the end of 2013.
Key agreements of the 12 th meeting and next steps:
The WG agreed to its work plan for 2013. 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 work groups include:
Work on extended sets of questions on child disability (ES-C):
Objectives for the 13th WG meeting:
The 13th WG meeting is tentatively scheduled to be held October 29-31, 2013 in Amman, Jordan.
In keeping with UN guidelines, issues of gender bias and other potential sources of bias will be a consideration of all WG work.
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.)