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Article 31 - Statistics and data collection
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Working Group | References

Third Session

Compilation of proposed revisions and amendments made by the members of the Ad Hoc Committee to the draft text presented by the Working Group as a basis for negotiations by Member States and Observers in the Ad Hoc Committee

(updated after the completion of the first reading at the Fourth Session, 26 August 2004)

Article 6
Statistics and data collection3

(Collection and protection of statistics and data — Uganda)
(Collection and protection of statistics — Colombia)

[In order to formulate and implement appropriate (regulations and — Mexico) policies to protect and promote the rights of persons with disabilities, States Parties [should encourage] (should include in their data gathering programme — Philippines) (actions for — Mexico) the collection (, compilation — Mexico), analysis and [codification — Mexico] (dissemination — Mexico) (and dissemination — Costa Rica) of statistics (on persons with disabilities — Mexico) and [information on disabilities — Mexico] (and their surroundings — Mexico) and on the effective enjoyment of human rights by persons with disabilities. The process of [collecting — Mexico] (collection — Mexico) and [maintaining — Mexico] (preservation — Mexico) this information [should — Costa Rica] (shall — Costa Rica):

(a) Respect the right to privacy, the dignity and the rights of persons with disabilities, (. Therefore — Mexico) [and — Mexico] the [information collected from persons with disabilities — Mexico] (collection of disability statistics — Mexico) [should — Costa Rica] (shall — Costa Rica) be [on a voluntary basis — Eritrea, Mexico] (treated with sensitivity — Eritrea) (done with the consent of persons with disabilities — Mexico);

(b) [Be kept only in a statistical format without identifying individuals and [should — Costa Rica] (shall — Costa Rica) be kept secure to prevent unauthorized access or misuse of information — Mexico] (Adhere to ethic regulations and principles regarding respect of anonymity and confidentiality, as well as the use of the disability statistics for social awareness — Mexico);

[(c) (The governmental authorities responsible for statistics in the States Parties shall — Mexico) [Ensure that the design and implementation of data collection is done in partnership with persons with disabilities, their representative organizations and [all — Mexico] other [relevant — Mexico] (interested — Mexico) stakeholders; — Jordan] — New Zealand]

(d) [[Be disaggregated — Mexico] (Disaggregate the data — Mexico) according to the purpose of the collection of [information — Mexico] (statistics — Mexico) and should include (at least, information about — Mexico, Lebanon) age, sex [and type of disability — Lebanon] (if it is located in rural or urban areas — Costa Rica); (States should move away from statistical investigations that merely enumerate impairments that can become a statistical means of pathologizing people with disabilities — Lebanon) — Jordan]

(e) Include detailed information on their access to public services, rehabilitation programmes, education, housing and employment (and other relevant areas — Lebanon) (health care, training, social security and housing — Algeria) (as well as the barriers faced by persons with disabilities to exercise their rights — Mexico);

(f) [Adhere to established ethics regarding respect for anonymity and confidentiality in the collection of statistics and data — Mexico] (Establish regulations and mechanisms to safeguard disability statistics and ensure their adequate use — Mexico) — EU]
((g) States Parties shall assume the responsibility for the dissemination of disability statistics and ensure its accessibility to all interested stakeholders — Mexico)

(2. States parties should include disability figures among the indicators to assess the development of the country reflecting the close link between poverty and disability when relevant — Lebanon)

(The States parties should provide conducive environment that would encourage non-governmental organizations and the private sector to conduct research and studies on the issues of concern to persons with disabilities — Philippines)

(Where necessary, States Parties shall collect appropriate information to enable them to formulate and implement policies to give effect to this Convention. The process of collecting and maintaining this information should:

(a) Comply with legally established safeguards to ensure confidentiality and respect for the privacy of persons with disabilities, including legislation on data protection;

(b) Comply with internationally accepted norms to protect human rights and fundamental freedoms;

(c) Where appropriate, be undertaken in collaboration with and following consultation of organizations of persons with disabilities. — EU)

Footnotes:

3. There were differing views within the Working Group regarding the inclusion of this draft article. Some delegations strongly supported the inclusion of an article on statistics and data collection in the text of the Convention for several reasons. Data collection is recommended in rule 13 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Its inclusion could allow States to respond more effectively to the needs of persons with disabilities and to have an accurate assessment of the situation of the persons concerned so as to implement programmes for their benefit. General Assembly resolution 58/132 of 22 December 2003, in paragraph 8, also deals with the issue of data and statistics. In the present draft article, the respect for the right to privacy is fundamental.

Other delegations opposed the inclusion of an article on statistics and data collection in the Convention, for several reasons. They expressed a concern for the respect of the right to privacy and the risk of misusing the information, and considered that such an article did not belong in a human rights treaty. They considered that statistics were not useful as a policy tool, and that resources spent in data collection should be used instead in programmes for persons with disabilities. There should be a mainstreaming of surveys and not just surveys for persons with disabilities.

Other delegations suggested that the draft article should be re-titled. One suggestion was “Collection and protection of statistics and data”. It was clearly considered that any data collected on disabilities must not infringe on the human rights of persons with disabilities.