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Article 31 - Statistics and data collection
Background Documents | Article 31 Background
Seventh Session | Fourth Session | Third Session
Working Group | References
Governments
Costa Rica
European Union
India
UN System Organizations
National Human Rights Institutions
Ontario Human Rights Commission
Non-governmental organizations
Australian NGOs
Center for International Rehabilitation
European Disability Forum
Japan Disability Forum
Landmines Survivors Network
Physical Disability Council of Australia
Working Meeting of NGOs for People with Disabilities from Ukraine, Russia, Belarus & Moldova
World Network of Users and Survivors of Psychiatry
Governments
COSTA RICA
Article 6
STATISTICS AND DATA COLLECTION
In order to formulate and implement appropriate policies to protect and promote
the rights of persons with disabilities, States Parties should encourage the
collection, analysis, codification and dissemination of statistics and information
on disabilities and on the effective enjoyment of human rights by persons with
disabilities. The process of collecting and maintaining this information shall:
a. respect the right to privacy, the dignity and the rights of persons with
disabilities, and the information collected from persons with disabilities shall
be on a voluntary basis;
b. be kept only in a statistical format without identifying individuals and
shall be kept secure to prevent unauthorised access or misuse of information;
c. ensure that the design and implementation of data collection is done in partnership
with persons with disabilities, their representative organisations and all other
relevant stakeholders;
d. be disaggregated according to the purpose of the collection of information
and should include age, sex, type of disability and if it is located in rural
or urban areas;
e. include detailed information on their access to public services, rehabilitation
programs, education, housing and employment;
f. adhere to established ethics regarding respect for anonymity and confidentiality
in the collection of statistics and data.
Draft Article 6
STATISTICS AND DATA COLLECTION
EU Proposal: Replace the contents of this Article by the following, and move
it to Article 25:
“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 organisations of persons with disabilities.”
In order to formulate and implement appropriate policies to protect and promote
the rights of persons with disabilities, States Parties should encourage the
collection, analysis, and codification of statistics and information on disabilities
and on the effective enjoyment of human rights by persons with disabilities.
The process of collecting and maintaining this information should:
(a) respect the right to privacy, the dignity and the rights of persons with
disabilities, and the information collected from persons with disabilities should
be on a voluntary basis;
(b) be kept only in a statistical format without identifying individuals and
should be kept secure to prevent unauthorised access or misuse of information;
(c) ensure that the design and implementation of data collection is done in
partnership with persons with disabilities, their representative organisations
and all other relevant stakeholders;
(d) be disaggregated according to the purpose of the collection of information
and should include age, sex and type of disability;
(e) include detailed information on their access to public services, rehabilitation
programs, education, housing and employment;
(f) adhere to established ethics regarding respect for anonymity and confidentiality
in the collection of statistics and data.
INDIA
Article-6
India had supported the proposal to include collection of statistics as a tool
for evaluation and monitoring and not as a separate article
MEXICO
Article 6: Statistics and data collection
In order to formulate and implement appropriate regulations and
policies to protect and promote the rights of persons with disabilities, States
Parties should encourage actions for the collection, compilation,
analysis and dissemination codification of statistics
on persons with disabilities and information on disabilities
and their surroundings, and on the effective enjoyment of human
rights by persons with disabilities. The process of collection
collecting and preservation maintaining this
information should:
(a) Respect the right to privacy, the dignity and the rights of persons with
disabilities. Therefore, and the collection
of disability statistics information collected from persons with
disabilities should be done with the consent of persons with disabilities
on a voluntary basis;
(b) Be kept only in a statistical format without identifying individuals
and should be kept secure to prevent unauthorized access or misuse of information;
(b) Adhere to ethic regulations and principles regarding respect of
anonymity and confidentiality, as well as the use of the disability statistics
for social awareness;
(c) The governmental authorities responsible for statistics in the States
Parties shall ensure that the design and implementation of data collection
is done in partnership with persons with disabilities, their representative
organizations and all other interested relevant stakeholders;
(d) Be disaggregated Disaggregate the data according
to the purpose of the collection of statistics information,
and should include at least, information about age, sex and
type of disability;
(e) Include detailed information on their access to public services, rehabilitation
programmes, education, housing and employment, as well as the barriers
faced by persons with disabilities to exercise their rights;
(f) Adhere to established ethics regarding respect for anonymity and confidentiality
in the collection of statistics and data.
(f) Establish regulations and mechanisms to safeguard disability statistics
and ensure their adequate use;
(g) State Parties shall assume the responsibility for the dissemination of disability
statistics and ensure its accessibility to all interested stakeholders.
UN System organizations
ILO
Draft Article 6
Statistics and Data Collection
• The ILO suggests that the existing draft text of this article should be revised
in the following ways:
o 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.
o 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.
o 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.
o Section (d) should refer to internationally comparable categories
• Incorporating the above suggestions, the draft article could be amended to
read as follows:
o 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:
a. 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.
b. 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;
c. be disaggregated according to the purpose of the collection of information
and should include age, sex and type of disability, using internationally comparable
categories;
d. include detailed information on the access of persons with disabilities to
public services, rehabilitation programs, education, housing and employment.
Interventions made at the Third Session:
Draft Article 6 Statistics and Data Collection
The ILO welcomes the inclusion of an article dealing with statistics in the
draft text, and has no objection to proposals made by some delegates to move
this provision, to the article on monitoring, as long as it is clear that the
data collected should be used for planning purposes and not solely for monitoring.
In addition to the existing text, the ILO suggests the following revisions:
• 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.
• Like Disabled Peoples International, the ILO calls for sections (a), (b) and
(f) to be amalgamated, as they are closely interrelated. Respect for anonymity
and 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 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:
a. 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.
b. 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;
c. be disaggregated according to the purpose of the collection of information
and should include age, sex and type of disability, using internationally comparable
categories;
d. include detailed information on the access of persons with disabilities to
public services, rehabilitation programs, education, housing and employment.
OHCHR
See references to international human rights conventions and jurisprudence
Article 6 - Statistics and data collection
WHO recognizes that human rights principles and norms are relevant to selecting
data collected to determine the type and extent of health problems affecting
a specific population (WHO, 2002). In this context, WHO fully supports disaggregating
data by age, sex and disability as well as treating health data with anonymity
and confidentiality. Furthermore, in the process of data collection WHO would
like to highlight the need to include provisions that promote and protect the
right to education and the right to seek, receive and impart information concerning
health issues (WHO, 2002).
WHO recognizes that in many low-income and middle-income countries there is
a shortage of data on the health and rehabilitation needs of persons with disabilities.
Such data would not only highlight the needs of persons with disabilities, but
would ensure equity in allocation of available resources in addressing their
needs. In this context, WHO is committed to provide technical assistance and
expertise within its mandate and looks forward to contribute towards issues
related to statistics and data collection within the framework of International
Classification of Functioning, Disability and Health (WHA54.21) for national
and international use.
National Human Rights Institutions
ONTARIO HUMAN RIGHTS COMMISSION
Article 6 – Statistics and data collection
In order to formulate and implement appropriate policies to protect and
promote the rights of persons with disabilities, States Parties should encourage
the collection, analysis and codification of statistics and information on disabilities
and on the effective enjoyment of human rights by persons with disabilities.
…
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. 8
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.
Non-governmental organizations
Interventions at the Third Session:
Article 6
Mr Chairman: Thank you for this opportunity to address the Ad Hoc Committee.
We strongly support the content and intent of draft article 6. However, statistics
and data collection are not appropriately characterised as a human right. In
our view, they represent operational activities that should be included with
other operative provisions at the end of the convention.
Statistics and data collection on the prevalence of disability and enjoyment
of human rights by people with disability is essential to effective policy development,
planning and evaluation of disability initiatives at both the national and international
levels. In this respect, the opening paragraph of this article could be improved
in three ways. First, by incorporating direct references to ‘planning’ and ‘evaluation’
as activities supported by effective statistics and data collection. Second,
by making it clear that States have a direct obligation to collect, analyse
and codify disability-related statistics and other data, rather than to merely
‘encourage’ others to do this. Third, by inserting a requirement that States
make disability related statistics and other data publicly available. This will
facilitate effective policy development, planning and evaluation by the private
sector.
Disability statistics and other data play an important role in policy development,
planning, and evaluation of international aid programs, standards development,
and trade liberalisation measures etc. The development of consistent statistical
and data collection methodologies between countries is therefore a key priority
for international cooperation. We therefore recommend the inclusion of an additional
paragraph promoting the development, through international cooperation, of consistent
statistical and data collection methodologies between States.
Thank you for the opportunity to address the Committee.
BIZCHUT
Draft Article
6 – Statistics and Data Collection
Collection of data – a tool in the promotion of rights, not a right in itself
We acknowledge the importance of statistics and data collection in determining
the means for combating discrimination and providing an appropriate response
to the needs of people with disabilities. However such activity is only a tool
to achieving equality. It is not a fundamental right in the same way as the
rights stated at the beginning of the Convention: Equality and Non-Discrimination,
Equality Before the Law, Individual Autonomy, etc.
Thus we suggest that this article be included further on in the Convention,
and not necessarily as an independent article. It could be included, for example,
under Article 25 (Monitoring), as one of the tools of which the State must make
use in order to eliminate discrimination.
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CENTER FOR INTERNATIONAL REHABILITATION
Draft article 6 – Statistics and Data Collection
Thank you, Mr. President.
On behalf of the Center for International Rehabilitation, I thank you for your
effort as president of this committee, and I thank the Bureau and the members
of this committee for favoring NGO participation in the debate.
We consider it important to move Article 6 to the end of the text, to include
it under the Operative Provisions section. We value the European Union’s proposal
regarding this article, but would like to see it expanded under a distinct section
for Implementation.
We find it relevant to highlight that the collection of information should be
used not only in the planning and implementation of policies, as proposed by
the European Union, but also in the monitoring of such policies. Furthermore,
it is imperative that such information be made accessible.
We concur with the European Union’s proposal regarding provisions to safeguard
the confidentiality and respect the privacy of persons with disability. This
is an extremely sensitive topic that the convention must expressly address.
As proposed by the European Union, internationally established norms must also
be applied to data collection, in order to protect the human rights and fundamental
freedoms of persons with disability.
We emphasize that it is always necessary to include disability organizations
in the design and process of gathering and interpreting information on persons
with disability. This process must not be segregated, however, and should be
integrated into the general statistics of the country. The intention should
be to evaluate the situation and needs of persons with disability, which, more
so than simply obtaining statistics, is our true interest.
Furthermore, and given that a number of delegations deem it important to gather
information in discrete categories, such as gender, age, etc., we call for the
inclusion of indigenous populations as its own category.
Finally, we stress the need for greater international cooperation in order to
improve and standardize the collection of information.
EUROPEAN DISABILITY FORUM
Draft Article 6 Statistics and data collection
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.
JAPAN DISABILITY FORUM
Draft Article 6 - Statistics and data collection
Original Text of the Draft
In order to formulate and implement appropriate policies to protect
and promote the rights of persons with disabilities, States Parties should encourage
the collection, analysis, and codification of statistics and information on
disabilities and on the effective enjoyment of human rights by persons with
disabilities. The process of collecting and maintaining this information should:
JDF’s proposed Amendment
Delete the words “statistics and information on disabilities” (the 3rd line)
We do not totally deny statistics and data collection, but “statistics and information
on disabilities” should be deleted.
Reason
In 1983 in Japan, the survey to find out actual conditions of mental hygiene
was virtually blocked as it faced strong opposition from persons with mental
illness, mental health workers and others. As one of the reasons of opposition,
people claimed that the survey had to be done on actual conditions of mental
hospital, not on persons with mental illness. In fact, in the same year, the
brutal killing of the patient in Utsunomiya Hospital by nurses was
disclosed. It developed into the reveal of many other cases of human rights
abuses against patients practiced in the hospital, and finally the Mental Hygiene
Law was revised.
It is meaningful to collect information about how rights of persons with disabilities
stipulated in the Convention are guaranteed, but not data on “disabilities.”
Collection of data on “disabilities” facilitates classification of “disabilities”
according to the medical model, making it possible to misuse for some undesirable
purposes such as introduction of measures supported by eugenics.
Data collection that benefits persons with disabilities could be the one that
focuses on their human rights conditions.
LANDMINES SURVIVORS NETWORK
DRAFT ARTICLE 6 COMMENTS
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
Statistics and Data Collection: Draft Article 6
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
STATISTICS AND DATA COLLECTION
Article 6:
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.
WORKING MEETING OF NGOs FOR PEOPLE WITH DISABILITIES FROM UKRAINE, RUSSIA, BELARUS & MOLDOVA
Article 6
Statistics and data collection
In the introductory part to substitute the phrase “and
on the effective enjoyment of human rights by persons with disabilities” by
“and on the effectiveness of the measures promoting enjoyment of human rights
by persons with disabilities”.
(c) After the words: “where appropriate, be undertaken in collaboration with
and following consultation of organisations of persons with disabilities” add:
“and/or their relatives, professionals”.
(d) instead of “Be disaggregated” to use the phrase: “be differentiated”
one more issue should be developed and added to Article 6 which would describe
criteria of effectiveness of realization human rights by persons with disabilities
on national level.
WORLD NETWORK OF USERS AND SURVIVORS OF PSYCHIATRY
Draft Article 6
In order to formulate and implement appropriate policies to protect and promote
the rights of persons with disabilities, 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. The process of collecting and
maintaining this information should:...
WNUSP COMMENT: 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.
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