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Back to: Third Session | Draft Article 6

Comments on the draft text
Draft Article 6: Statistics and data collection

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United Nations System

ILO

  • The ILO suggests that the existing draft text of this article should be revised in the following ways:
    • The introduction should call on States Parties to ensure, to the extent possible, that national population censuses, labour force and other household surveys, household panel surveys and other data collection exercises at the national level should gather information on people with disabilities, in the same way as on the general population. The introduction should also include provision for the dissemination of the statistics.
    • Sections (a), (b) and (f) should be amalgamated, as they are closely interrelated. Respect for anonymity sand confidentiality should refer not only to data collection but also to dissemination.
    • The second phrase of section (a) should be deleted, since participation in censuses and related data collection exercises is compulsory for the population falling within the scope of the exercise.
    • Section (d) should refer to internationally comparable categories
  • Incorporating the above suggestions, the draft article could be amended to read as follows:
    • In order to formulate and implement appropriate policies to protect and promote the rights of persons with disabilities, States Parties encourage the collection, codification collection, classification, dissemination and analysis of statistics and information on disabilities and on the effective enjoyment of human rights by persons with disabilities. They should ensure that, to the extent possible, national population censuses, labour force and other household surveys, household panel surveys and other national data collection exercises gather information on people with disabilities in the same way as on the general population. The process of collecting, maintaining and disseminating information on persons with disabilities should:
      • respect the right to privacy, the dignity and the rights of persons with disabilities and adhere to established ethics regarding respect for anonymity and confidentiality, by for example, releasing the information only in a statistical format that does not permit the identification of individuals and keeping information secure to prevent unauthorized access or misuse of individual data.
      • ensure that the design and implementation of data collection is done in partnership with persons with disabilities, their representative organizations and all other relevant stakeholders;
      • be disaggregated according to the purpose of the collection of information and should include age, sex and type of disability, using internationally comparable categories;
      • include detailed information on the access of persons with disabilities to public services, rehabilitation programs, education, housing and employment.

National Human Rights Institutions

Ontario Human Rights Commission

The Commission supports this draft Article and all its subparagraphs. The Commission’s Guidelines on Special Programs set out similar principles for the process of collecting and maintaining statistics for the purpose of monitoring and ameliorating social and economic disadvantage in the context of “affirmative-action” type programs.

The Commission is also of the view that statistics and data collection may be warranted in situations where a service provider, employer or other organization has an objective basis to believe that systemic infringement of rights may be occurring, or there are persistent allegations or perceptions of systemic discrimination, or where it is an organization’s intent to prevent or ameliorate disadvantage already known to be faced by persons with disabilities. This is in keeping with the remedial purpose of the Code and with recent human rights jurisprudence that finds organizations have an obligation to take into account a person’s already disadvantaged position within Canadian society. 1

In two of its recent public inquiry reports, the Commission has recommended to government that statistics and data collection be undertaken in order to monitor and take action on reported systemic and adverse discrimination. These reports are: Paying the Price: The Human Cost of Racial Profiling; and, The Opportunity to Succeed: Achieving Barrier-free Education for Students with Disabilities.

NGOs

European Disability Forum

The collection of statistics, if done properly, might contribute to the design of policies and legislation which promote and protect the rights of persons with disabilities.

EDF suggests to link this article to the article on national monitoring.

Landmine Survivors Network

There is much support for data collection as an implementation measure in the UN Standard Rules. (Cf. UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities, Rule 13) In addition, the Committee on the Rights of the Child has emphasized the need for statistical information as a means of effective implementation and monitoring. (Cf. Committee on the Rights of the Child, Reporting Guidelines to States Parties, para. 7) Inclusion in the treaty of provisions on statistics and data collection would therefore be in keeping with such recommendations. Also, given that many states will likely engage in statistics and data collection as part of the development of national legislation and programs implementing the convention, the inclusion of this article is important as a means of addressing concerns about methods used in the collection, analysis and intended use of data and statistics, particularly as regards issues of privacy.

The Ad Hoc Committee may also wish to consider the establishment of a technical body that could assist in formulating guidelines related to statistics and data collection. Where particular expertise is required to assess information relating to the implementation of a treaty, it is not uncommon for a technical body to be established by a treaty, typically consisting of individuals with particularized expertise in the topic in question. (Cf. Framework Convention on Climate Change, Article 9; Convention to Combat Desertification, Article 24)

As regards the sub-paragraphs of Draft Article 6, it may be useful to re-order the paragraphs so that those addressing issues of privacy (sub-paragraphs (a), (b) and (f)) are grouped together, or perhaps combined in order to avoid repetition and redundancies.

Draft Article 6(c) emphasizes the important need to include people with disabilities and their representative organizations in the design and implementation of data collection. Given that people with disabilities are the specific group addressed by this convention, it may be inappropriate to also reference in this paragraph “all other relevant stakeholders,” as the convention is not intended to elaborate rights for those individuals.

Physical Disability Council of Australia Ltd

PDCA strongly recommends that section d) be amended so that country of birth and language spoken in the home are at least included in the collection of information.
Meaningful data about ethnicity and cultural origin are critical in the planning and delivery of disability and other community services that respond to the needs of a culturally diverse community. This information is needed for policy development and the planning of delivery of services and resource allocation at all levels: national, state, regional and local.

If the government is serious about improving equity of access and equity of outcome for people from culturally and linguistically diverse backgrounds, it will need data quantifying ethnicity and cultural origin in order to achieve this.

Without the availability of location specific data, the particular needs of the local communities will not be effectively addressed. This information can only come from a regular and comprehensive collection of data.
At present there are no statistics available about the incidence of disability within non English speaking communities. Using data from the Australian Bureau of Statistics (ABS) and the Department of Family and Community Services (FaCS), PDCA currently estimate that 4.6% of Australians (902,082 people) are people from a non English speaking background with disability.

World Blind Union

It is important that in all data collections and statistics made by State Parties, also provisions are made to include PWD.

Many countries including EU, did not want this Article and felt that it is not a HR issue. The problem could be solved by adding provisions for this in the monitoring part of the Convention or in the preamble.

World Network of Users and Survivors of Psychiatry

“… States Parties should encourage the collection, analysis, and codification of statistics and information on [DELETE: disabilities and] on the effective enjoyment of human rights by persons with disabilities…”

This article has been the subject of much controversy. One of our member organizations suggests that the appropriate role of governments in collection of data is to support organizations of persons with disabilities which would themselves perform this function. If the article is retained in its present form, we urge the deletion of the term “disabilities” in the chapeau, as indicated. Collection of data on disabilities, as opposed to enjoyment of human rights by people with disabilities, is more in keeping with a medical model of disability that objectifies disability and separates it from its social context. While collection of such information may be useful in some circumstances, it also has great potential for misuse, by encouraging classification of people according to their disabilities.

Footnotes

Footnote 1: The notion that substantive differential treatment can result from either because of a distinction, exclusion or preference, or because of a failure to take into account a person's already disadvantaged position within Canadian society was first articulated in Law v. Canada, Supra note 2,. The approach has been affirmed in several subsequent cases, most notably two cases dealing with discrimination on the basis of disability: Mercier, Supra note 4, and Granovsky v. Canada, Supra note 5.

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