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UN Programme on Disability   Working for full participation and equality

Review and appraisal of the
World Programme of Action
concerning Disabled Persons

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IV. Issues in the development of indicators on disability

A. Progress made in the development of statistics and indicators on disability A. Progress made in the development of statistics and indicators on disability

As recommended in the World Programme of Action, the Statistics Division of the United Nations Secretariat has continued to work towards the development of a realistic and practical system of data collection in countries and to prepare technical manuals and documents on how to collect such statistics. Substantive accomplishments of Statistics Division since the end of the Decade include:

(a) The organization, in cooperation with the Central Bureau of Statistics of the Netherlands, of an expert group meeting on development of impairment, disability and handicap statistics (Voorburg, Netherlands, 7-11 November 1994). The meeting reviewed existing disability data-collection methods and standards, and identified in the light of that review a set of guidelines for use in censuses, surveys and registrations;

(b) The publication in 1996 of the Manual for the Development of Statistical Information for Disability Programmes and Policies.26 The Manual was written specifically for programme managers who produce and use statistical information to implement, monitor and evaluate disability policies and programmes. It was prepared in collaboration with WHO, and received support from the Swedish International Development Agency (SIDA) and a grant from the United Nations Voluntary Fund on Disability;

(c) The inclusion of disability for the first time as a topic in the revision of the Principles and Recommendations for Population and Housing Censuses27 for the year 2000 World Population and Housing Census Programme. The Statistical Commission, at its twenty-ninth session, endorsed the principles and recommendations and supported the new and revised sections;28

(d) The preparation of a minimum set of impairment, disability and handicap (IDH) tabulations that should be produced with census data on prevalence of disability by sex, age, urban-rural residence and type of disability. Priority also is to be accorded to presenting tabulations comparing persons with and without disablement with key social and economic characteristics. The set of IDH tabulations is included in the year 2000 census principles and recommendations;

(e) Continued work on the handbook on census and survey methods for the development of impairment, disability and handicap statistics. The handbook is addressed to statistical offices and research organizations and provides them with guidelines on the collection of IDH statistics in censuses and surveys and their analysis and dissemination for policy purposes. Preparation of the handbook is supported by the Central Bureau of Statistics of the Netherlands and SIDA.

The World Programme of Action also recommends that the United Nations develop systems for the regular collection and dissemination of data and information on disability. The Statistics Division is undertaking revisions and updating the disability statistics database so that it will present, in more user-friendly formats, data on disability and a minimum set of indicators on the situation of persons with disabilities and those without. As a first, practical step indicators are under preparation on the prevalence of disability, within the ICIDH framework, for dissemination on the Internet.

B. Information currently available for the development of indicators

National censuses represent a major source of disability data for many countries. Since the observation in 1981 of the International Year of Disabled Persons, the number of censuses that include disability issues has increased significantly. According to information made available to the Statistics Division, in the 1970, pre-year round, fewer than 20 countries included disability questions in the national population census; in the 1980 round, this number increased to nearly 60 countries and, in the 1990 round, to over 80 countries.

In assessing the state of disability statistics in 1980, the World Programme of Action noted that data on education and employment status of people with disabilities were important for assessing equalization of opportunities. Few countries at present produce census tabulations on education and employment for the population with disabilities. This issue is addressed in recent recommendations for the year 2000 census on specifications for the tabulation plan for disability data.29 Special attention is directed to presenting tabulations comparing persons with and without disabilities on key social and economic characteristics.

The International Labour Organization collects data on the monitoring of ILO Convention No. 159 and has received data from the 54 countries that have ratified the Convention. Since 1980, UNESCO has collected data on practices in special education; its most recent review, 1993-1994, contains data for 52 countries.

C. Issues in monitoring and data collection

Four issues emerge from the efforts of the United Nations to monitor and to collect and compile official national data on the progress made and obstacles encountered in the implementation of the World Programme of Action. First, although comprehensive monitoring of all aspects of the environment as it facilitates the achievement or hindrance of all three goals of the World Programme of Action is clearly important, few countries systematically collect data on environmental variables. Likewise, the areas of life where the environment can hinder equalization of opportunity, such as independence, use of time, social integration, economic self-sufficiency and life-cycle transitions, also have not been systematically measured. Third, resource constraints can hinder the collection of data on all important topics related to disability. Fourth, the success of certain data collection efforts under conditions in which resources are scarce suggests the wisdom of setting clear priorities in any data collection effort.

Data collection efforts cannot be viewed in isolation from the overall aims of United Nations programmes in the social and economic sectors. Options selected to improve the monitoring of programme implementation, including the development of indicators to measure and assess programme progress must focus on expected outcomes of the respective programme goals and objectives. If the measures of programme efforts demonstrate apparent success but desired outcomes are not achieved, an assessment of the particular determinants of expected outcomes is critical. Environmental determinants of programme performance and critical areas of life are often difficult to measure when resources are scarce, particularly in a census. The paradox is that measures of whether persons with disabilities are empowered to take independent decisions in their lives, to exercise control over their use of time, to plan and decide on use of economic resources and to prepare for major life-cycle changes represent the types of indicators that can predict whether desired outcomes are being achieved.

There is an observed tendency for the information collected on disability to relate to topics where the data are perceived to be the most accurate and not to those where data may be difficult to obtain. Often this perception has reflected a social welfare rather than a social development perspective, since data related to prevention and rehabilitation often are viewed as more reliable than data on equalization of opportunities issues. Collection of such information serves to reinforce a social welfare perspective rather than pinpoint those areas that need to be addressed to bring forth meaningful social change. Thus, care must be taken to ensure that the priorities for collecting data do not become the priorities for social policy. As policies encompassing universal design, empowerment of persons with disabilities as development agents and human rights are adopted, these polices would drive decisions on disability indicators.


26 United Nations publication, Sales No. E.96.XVII.4.

27 ST/ESA/STAT/SER.M/67/Rev.1, paras. 2.266-2.285.

28 Official Records of the Economic and Social Council, 1997, Supplement No. 4 (E/1997/24-E/CN.3/1997/29), para. 55.

29 Principles and Recommendations for Population and Housing Censuses (ST/ESA/SER.M/67/Rev.1), pp. 371-372.

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United Nations, 2003-04
Department of Economic and Social Affairs
Division for Social Policy and Development