1. Methodological Work on Disability Statistics

Publication of Guidelines and Principles for the Development of Disability Statistics[1]

This United Nations Statistics Division (UNSD) publicationis aimed at assisting national statistical offices and other producers of disability statistics in improving the collection, compilation and dissemination of disability data. The document addresses methodological issues in the area of disability by providing guidelines and principles related to data collection, through surveys and censuses and also on the compilation, dissemination and usage of data on disability. The publication builds on the Manual for the Development of Statistical Information for Disability Programmes and Policies,^[2] and also on the section on disability in the Principles and Recommendations for Population and Housing Censuses, Revision 1.^[3]

The Guidelines recommend that measurement of disability be done within the conceptual framework of the WHO International Classification of Functioning, Disability and Health –ICF (World Health Organization, Geneva, 2001). The ICF conceptual framework provides standardized concepts and terminology that can be used in disability measurement instead of the unstandardized and often pejorative terms used in many national studies on disability. The use of a common framework also contributes to greater comparability of data at the national and international levels, thereby increasing the relevance of the data to a wide set of users.

It is primarily for these reasons that the United Nations, in its methodological guidelines, recommends to countries to use the ICF in disability measurement as a basis for the definition of the population with disabilities, in the formulation of questions, and also to classify the data.

Regional training workshops on disability statistics

Since the finalization of the Guidelines, the UNSD has organized and conducted two regional training workshops on disability statistics (see paragraph that follows). The overall objective of these workshops was to strengthen national capabilities to produce, disseminate and use data on disability for policy development and implementation. A specific objective of the workshops was to discuss the use of the ICF as the conceptual framework for collecting and classifying data on disability. At the workshops, participants from national statistical offices and data users from relevant government ministries were trained in how to identify disability data needs, and the use of the ICF concepts and definitions in the design of questions on disability and classification of the data.

The first regional training workshop on disability statistics was the United Nations Workshop on Disability Statistics for Africa, which was held in Kampala, Uganda, from 10-14 September 2001. The workshop recommended that the ICF concepts be used in the measurement of disability to encourage the use of common definitions and neutral terminology that would improve data comparability in the region. The second workshop, the Meeting on Disability Measurement for ESCWA Countries, was held in Cairo, Egypt from 1-5 June 2002 in collaboration with the Economic and Social Commission of West Asia  (ESCWA). A recommendation of the meeting was that the ICF be used as the unifying framework for disability measurement in the region.

Measurement of Disability

The measurement of disability for statistical reporting was the focus of the International Seminar on the Measurement of Disability held in New York 4-6 June 2001 and sponsored the by UNSD, UNICEF, Eurostat and the Centers for Disease Control and Prevention (CDC) of the United States. The Seminar, which brought together developed and developing country experts in disability measurement, reviewed and assessed the current status of methods used in population-based data collection activities to measure disability in national statistical systems, and agreed to establish the Washington Group on Disability Statistics (WG) to implement the Seminar’s recommendations for further work to improve the measurement of disability.

The first meeting of the WG, initiated by UNSD and hosted by the National Center for Health Statistics of the CDC, was held in Washington, D.C., on 18-20 February 2002. The meeting refined the objectives of the WG to be: (1) To guide the development of a small set(s) of general disability measures, suitable for use in censuses, sample based national surveys, or other statistical formats, which will provide basic necessary information on disability throughout the world; (2) 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; and (3) To address the methodological issues associated with the measurement of disability considered most pressing by the WG participants.

In addition to setting the objectives of the WG, the first meeting discussed various methodological issues in disability measurement, including purposes of measurement, an examination of the ICF model, the UN standard disability tables, global measures of disability, the relationship of global measures to the ICF, the confounding function of assistive device use, cultural practices that influence the nature of the environment or proscribe participation, cultural issues that act as barriers to collecting data and cross-national comparability of information.

The second meeting of the WG was held in Ottawa, Canada on 9-10 January 2003, and covered the following topics: development of a measurement matrix that linked purpose of measurement with question characteristics; review of general disability measures currently in use according to matrix dimensions; identification of measurement gaps; general health measures used in censuses and surveys; implementation of the Minimum European Health Module; reports from selected countries using general disability measures; measurement of environment and participation in existing surveys.

The third meeting of the WG will be held in Brussels, Belgium in December 2003 (tentative). The tentative programme agenda for this meeting can be accessed at the WG website, http://www.cdc.gov/nchs/citygroup.htm. This website also contains the agenda and products of the first and second meetings of the WG, including the final report.

2. Collection and dissemination of information on disability

           The World Programme of Action Concerning Disabled Persons specifically requested the United Nations to develop systems for the regular collection and dissemination of information on disability. As a step in implementing this mandate, the UNSD disability website

http://unstats.un.org/unsd/disability

provides a convenient source for statistical reference and guide to the available data, specifically:

More broadly, the materials in the web site facilitate and promote a dialogue related to the needed improvements in the collection and compilation of comparable disability statistics.

In 2004, UNSD will initiate the systematic and regular collection of basic disability statistics by introducing a disability statistics module into the existing Demographic Yearbook data collection system, which compiles population and demographic statistics annually from national statistics offices. UNSD is in the process of developing the disability module and determining the data collection and dissemination content, schedule and format(s).