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UN Programme on Disability   Working for full participation and equality


Article 31 - Statistics and data collection
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Disability-specific instruments

Standard Rules on the Equalization of Opportunities for Persons with Disabilities
Adopted by the United Nations General Assembly, forty-eighth session, resolution 48/96, annex, of 20 December 1993

Rule 13 Information and research

States assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and promote comprehensive research on all aspects, including obstacles that affect the lives of persons with disabilities.

States should, at regular intervals, collect gender-specific statistics and other information concerning the living conditions of persons with disabilities. Such data collection could be conducted in conjunction with national censuses and household surveys and could be undertaken in close collaboration, inter alia, with universities, research institutes and organizations of persons with disabilities. The data collection should include questions on programmes and services and their use.

States should consider establishing a data bank on disability, which would include statistics on available services and programmes as well as on the different groups of persons with disabilities. They should bear in mind the need to protect individual privacy and personal integrity.

States should initiate and support programmes of research on social, economic and participation issues that affect the lives of persons with disabilities and their families. Such research should include studies on the causes, types and frequencies of disabilities, the availability and efficacy of existing programmes and the need for development and evaluation of services and support measures.

States should develop and adopt terminology and criteria for the conduct of national surveys, in cooperation with organizations of persons with disabilities.

States should facilitate the participation of persons with disabilities in data collection and research. To undertake such research States should particularly encourage the recruitment of qualified persons with disabilities.

States should support the exchange of research findings and experiences.

States should take measures to disseminate information and knowledge on disability to all political and administration levels within national, regional and local spheres.

World Programme of Action Concerning Disabled Persons
Adopted by the United Nations General Assembly, thirty-seventh session, Resolution 37/52 of 3 December 1982

In view of the little knowledge that is available as to the place of the disabled person within different cultures, which in turn determine attitudes and behaviour patterns, there is a need to undertake studies focusing on the socio-cultural aspects of disability. This will give a more perceptive understanding of the relations between non-disabled and disabled persons in different cultures. The results of such studies will make it possible to propose approaches suited to the realities of the human environment. Furthermore, an effort should be made to develop social indicators relating to the education of disabled persons so as to analyze the problems involved and plan programmes accordingly.

Member States should develop a programme of research on the causes, types and incidence of impairment and disability, the economic and social conditions of disabled persons, and the availability and efficacy of existing resources to deal with these matters.

Research into the social, economic and participation issues that affect the lives of disabled persons and their families, and the ways these matters are dealt with by society, is of particular importance. Research data may be obtained through national statistical offices and census bureaux; however, it should be noted that a household survey programme designed to collect information about disability issues is more likely to produce useful results than a general census of the population.

There is also a need to encourage research with a view to developing better aids and equipment for disabled persons. Particular efforts should be devoted to finding solutions which are suited to the technological and economic conditions in developing countries. ()

Research at the medical, psychological and social levels offers the promise of reducing physical, mental and social disability. There is a need to develop programmes which include the identification of areas where the probability of progress through research is high. The difference between industrialized countries and developing countries should not prevent the development of fruitful collaboration since many problems are of universal concern.

Studies in the following fields are of value to both developing and developed countries:

Clinical research into the containment of those events which cause disability; evaluation of the individual's functional capacity from the medical, psychological and social aspects; and evaluation of rehabilitation programmes, including information aspects;

Studies of the prevalence of disability, the functional limitations of the disabled, the conditions under which they live and the problems they face;

Health and social service research, including research into the gains and costs of different rehabilitation and care policies, ways of making programmes as effective as possible and a search for alternative approaches. Studies of community care of disabled persons would be particularly relevant to developing countries, and the study and evaluation of experiments, as well as comprehensive demonstration programmes, would be of value to all. Much information is available which could be productive for secondary analysis.

Health and social science research institutions should be encouraged to undertake research and to collect information on disabled persons. Applied research activities are of particular value in the development of new techniques for the delivery of services, the preparation of information materials appropriate for different language and culture groups, and the training of personnel under conditions relevant to the region.




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