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Back to: Third Session of the Ad Hoc Committee
Daily summary of discussions
Daily
summary of discussions related to
ARTICLE 6: STATISTICS AND DATA COLLECTION
UN Convention on the Rights of People with Disabilities
Third session of the Ad Hoc Committee - Daily Summary
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Volume 4, #2
May 25, 2004
Morning Session
Commenced: 10:20 AM
Adjourned: 12:50 PM
Kenya supported the inclusion in Article 6 of data
collection, and emphasized its role in helping governments make decisions
about the allocation of resources.
Uganda supported the inclusion of Article 6, which
is appropriate and useful in providing for the rights of PWD. They proposed
changing the title to “Collection and protection of statistics and data”
to allay fears about the misuse of data.
Colombia stressed the importance of this Article to
the international community. It also echoed concerns about the privacy
of data and would like the title changed to a reformulation of “Collection
and Protection.”
South Africa supported this Article, especially the
provision on respect for the right to privacy.
Japan in general supported the Article, but expressed
concerns about dictating the statistical categories into much detail,
as in 6(d) and 6(e), because each government has different concerns
about information. Decisions about data should be left to individual
countries.
Lebanon added that statistics should include at least
age and sex, and suggested deleting type of disability and adding “and
other relevant areas” at the end of 6(e) so as not to limit data collection
to sectors that have been mentioned. After 6(d), in accordance with
the move from a medical to a social model, Lebanon suggested “States
should move away from statistical investigations that merely enumerate
impairments that may become a statistical means of patronizing PWD.”
Lebanon also proposed adding a paragraph reading, “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,” but it acknowledged that the paragraph might be included
elsewhere in the Convention as well.
Eritrea considered this an important tool in implementing
Article 4, which calls on States to adopt legislative and administrative
measures. On the issue of privacy, Eritrea suggested that 6(a) could
conclude with “should be treated with sensitivity,” while deleting “on
a voluntary basis.”
Yemen clarified that when it speaks on behalf of the
Arab Group, it does not block the members’ right to speak for themselves.
Yemen stated that the Arab Group cannot adopt measures without the availability
of statistics, but that it is important to respect the secrecy and discretion
of collection, referring to the protection of data in the title, while
respecting the privacy issues that may vary among communities. Yemen
stated that the details of disabilities should not be specified unless
it is essential to have those details.
Ireland/EU questioned the need for this article, suggesting
instead that the focus should be on the rights of persons with disabilities
rather than on the policy making functions of States; however, the EU
is now prepared to make a proposal about the gathering of information.
States should not simply collect information for its own sake, and suggested
that the paragraph start with “where necessary.” The EU asserted that
this Article should enable States to form policies and that it is insufficient
to have a vague reference to privacy; rather, clear and legally established
safeguards are needed to respect the privacy of persons with disabilities.
The EU also affirmed that any process adopted by States should comply
with international norms to protect human rights and fundamental freedoms
and that such processes should be undertaken in collaboration with and
following consultations with organizations of persons with disabilities.
The EU opposed 6(d) and 6(e) for the reasons put forth by Japan.
Costa Rica agreed that this Article is important and
should be retained. It proposed adding “and dissemination” after “codification”
in the chapeau and changing all instances of the verb “should” to the
variant “shall,” as it is imperative to observe the privacy and dignity
of persons with disabilities. Because it is necessary to collect data
on place of domicile to judge the appropriateness of measures by governments,
the phrase “and if it is located in rural or urban areas” should be
appended to 6(d).
Mexico considered it important to include this Article
so that all States can provide for all the rights of persons with disabilities.
Data collection should be voluntary and confidential, and should include
socioeconomic and biomedical information. States should be responsible
for data and statistical collection. Mexico also stressed the need to
establish mechanisms and norms to safeguard information.
Bahrain proposed that 6(d) include educational level
and social status. It also suggested that 6(f) be redrafted so that
families would be provided information, taking into account confidentiality
in data collection.
Sierra Leone supported the inclusion of this Article
with an amendment of the title to read “Collection and protection of
statistics and data.” Like all tools, information can be misused, but
items 6(b), 6(d), and 6(f) contain certain principles to act as safeguards
so that the tool could not be misused. Sierra Leone supported prohibiting
unauthorized access, and ensuring voluntarism, confidentiality, and
anonymity. It also supported Costa Rica’s amendments as a whole, but
would not insist that 6(d) reference age, sex, or type of disability,
because adding new data requirements might open a “Pandora’s Box.”
Algeria expressed its support for keeping the Article's
present wording, except the listing of examples of other aspects of
the lives of PWD. They commented that this looks like an exhaustive
list, and that others could be added, e.g., health care, social security,
rehabilitation programs, housing, employment, medical, training, etc.
Algeria stated that it is preparing a proposal, which it will distribute.
India supported the EU proposal in its entirety.
Philippines proposed exchanging the words “should
encourage” with “shall include in their data gathering program the collection
of…” in the chapeau. It recommended an additional paragraph: “States
Parties should provide a 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.”
Egypt, responding to Bahrain, stated that families
will not receive, but instead will provide, information.
Colombia supported amendments by Mexico and Costa
Rica and suggested adding the recent initiative taken by Philippines
regarding the role of NGOs.
Thailand supported the EU proposals regarding the
Article’s content but opposed the EU suggestion to consolidate it with
Article 25.
Jordan agreed with the EU that more is needed than
data and statistics, and thus proposed moving this to Article 25 on
research, monitoring, and evaluation. Jordan stated that this Article
would serve all other articles. States should include disability in
their national censuses. Jordan asserted that 6(a) and 6(f) refer to
norms and ethics of research, and that they can be combined into a general
statement; and that 6(c) and 6(d) are redundant and could be deleted.
Canada supported the substance of the EU proposal.
The Chair concluded the delegates' discussion of Article
6 and moved on to NGOs.
International Rehabilitation Center supported moving
the Article to the end of the text where there are concrete provisions.
It underlined the importance of data gathering not only to develop policies
but also to support following up on those policies. Data collected should
be made accessible. The Convention should specifically address privacy
concerns. Disabled peoples’ organizations should always be involved
in the design, gathering, and follow-up of statistical activities. While
several delegations believe this data should be broken down by sex and
age categories, IRC believes that indigenous peoples should also be
included. International cooperation should be encouraged on this issue
so as to generate uniformity in states efforts.
Disabled Peoples' International stressed the importance
of Article 6, as too often countries fail to implement programs beneficial
to persons with disabilities because of a lack of supporting data. This
is noted in Rule 13 of the Standard Rules, and by the Convention on
the Rights of the Child, in its reporting guidelines to States Parties.
DPI stated that in particular 6(c) needs to stress working in partnerships.
DPI suggested that 6(a), 6(b) and 6(f) be grouped together in order
to avoid repetition. DPI also suggested that this Article be moved further
down in the treaty to better reflect its character as an implementation
measure.
Afternoon Session
Commenced: 3:20 PM
Adjourned: 5:59 PM
International Labor Organization welcomed the provision
on statistics and data collection. It accepted the addition of the word
“information” as long as it is clear that information will be used for
planning and resource allocation and not solely for monitoring. The
introduction should call on States Parties to ensure to the extent possible
that national population censuses, and labor force and other household
surveys should gather information on PWD. It should also include a provision
for the dissemination of statistics. Like DPI, it suggested that 6(a),
6(b), and 6(f) be combined because they are interrelated. Confidentiality
and anonymity is important not only in data collection, but in dissemination.
The second phrase of section 6(a) should be deleted because census participation
is mandatory in many States. Section 6(d) should require internationally
comparable categories.
PWD Australia/NACLC/Australian Federation of Disability Organizations
supported Article 6, but statistics and data collection are not human
rights; they are operational and should therefore appear at the end
of the Convention. Statistics are important for policy development,
planning, and evaluation. The opening paragraph needs to reference planning
and evaluation, making it clear that States are obligated to collect,
analyze and codify statistics on disability. A requirement should be
added for making disability statistics publicly available. Another new
paragraph should promote the development, through international cooperation,
of consistent statistic collection methodologies.
The UN Special Rapporteur for Disability emphasized
the importance of statistics, without which decision-makers may choose
simplistic approaches to the treatment of PWD. The term “promote” in
the first paragraph is not strong enough to create awareness. Awareness
should be strengthened through suitable policies.
World Network of Users and Survivors of Psychiatry urged
specific provisions to protect data collection in 7(a) and 7(b), rather
than the EU’s language. Clause 7(c) needs to say the preferred method
of design and data collection is in partnership with PWD because this
not only creates better data, but also this helps create disability
movement.
National Human Rights Institutions supported the EU
language because it has more legal safeguards for privacy and confidentiality.
It suggested an amendment to delete “where necessary” from the chapeau,
because it allows too much discretion. It proposed an amendment to 6(c)
reading: “to ensure that the collection of information is done in partnership
with PWD, their respective organizations, and all other relevant stakeholders.”
It also supported retaining this as a separate article.
Yemen clarified that there is no consensus in the
Arab Group regarding the consolidation of Article 6 and Article 25.
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