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Article 6 - Statistics and data collection
Background Documents | Article 6 Background
Fourth Session | Third Session | Working Group | References
References
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
Research
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.