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Article 31 - Statistics and data collection
Background Documents | Article 31 Background
Seventh Session | Fourth Session | Third Session
Working Group | References
Fourth Session
Governments
Non-governmental organizations
Children's Rights Alliance for England
International Disability Caucus
International Save the Children Alliance
People with Disabilty Australia
Working meeting of NGOs for People with Disabilities from Ukraine, Russia, Belarus & Moldova
Governments
CHILE
ARTICLE 6: STATISTICS AND DATA COLLECTION
We support the proposal of Uganda to include the word “protection”
in the title, which would read “Collection and protection of statistics
and data”. The inclusion of the word “protection” is decisive,
in as much as the commentary on the article takes into account some aspects
regarding privacy and confidentiality in the delivery and collection of
information on persons with disabilities and their families, which therefore
requires the aforementioned safeguards.
In the first paragraph of the article, Chile proposes the inclusion
of “ public policies, tabulation, census and the degree of the exercise
of and respect for rights”. The suggestions of other States should also
be incorporated, therefore it should read:
“In order to formulate and put into practice appropriate provisions, norms
and public policies to promote and protect the rights of
persons with disabilities, States parties should include in their programmes
to gather data, statistics and censuses, measures for the compilation, tabulation,
analysis, codification and dissemination of this information, as well as
the environment surrounding persons with disabilities and the degree
to which they exercise their human rights and fundamental freedoms and those
rights are respected. The process of collecting, compiling, maintaining
and preserving this information shall…..”
We propose modifications to sub-paragraph c) incorporating the contributions
of some States (Mexico, Jordan and New Zealand) and of Chile, in the latter
case adding the words “their families”; the revised text would read as follows:
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 families, their representative organizations and all other
interested stakeholders;
There is a proposal to include in sub-paragraph e) a reference to
transport as an essential area of access that should be verified through
the collection of data and statistics. We support the idea of Algeria to
add “health care”, but in a broader formulation referring to health care
programmes, and also adding a reference to “support through medicines and
technical assistance as appropriate”, as it is an element of interest and
very important to large numbers of persons with disabilities; the text would
read as follows:
d) Include detailed information on their access to public
services, rehabilitation programmes, education, training, employment, housing,
transport, health care, support (subsidies) for medicines and technical
assistance as appropriate as well as other relevant areas, describing the
barriers and obstacles faced by persons with disabilities in the exercise
of their rights.
We support the alternate drafting of sub-paragraph f) proposed by
Mexico, as it provides more comprehensive safeguards:
f) Establish regulations and mechanisms to safeguard disability
statistics and ensure their appropriate use.
We support the proposal of Lebanon to include a paragraph 2, because
it introduces statistical information on disability into the overall world
view of the country. Chile would like to add to its proposal the final objective
of the cross-cutting analysis of these statistics, which is “their comprehensive
consideration in legislation and public policy”.
“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, conducting a
cross-cutting analysis of those statistics for their comprehensive consideration
in legislation and public policy.”
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EUROPEAN UNION
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.
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 of statistics on persons with
disabilities and their surroundings, and on the effective
enjoyment of human rights by persons with disabilities. The process of collecting
and disseminating this information should:
e) promover que la información sobre la población con discapacidad,
forme parte de los indicadores utilizados para evaluar el desarrollo de
los Estados Parte en temas como derechos humanos, pobreza, equidad, salud,
educación, trabajo y otros considerados como relevantes;
a) promote that the information on persons with disabilities be included
as part of the indicators used to evaluate the development of the State
Parties on such issues as human rights, poverty, equity, health, education,
labor and
a) Respect the right to privacy, the dignity and the rights of persons with
disabilities. Therefore, the collection of disability statistics
should be done with the consent of persons with disabilities;
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) Ensure that the design and implementation of data collection is done
in partnership with persons with disabilities, their representative
organizations and other interested stakeholders;
d) Disaggregate the data according to the purpose of the collection of statistics,
which should include at least, information about age, sex and type
of disability, and to the extent of their possibilities States Parties
shall disaggregate the information in the various geographical levels agreed
internationally;
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) 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.
Para 2 is reformulated entirely, taking into account proposals made by different
delegations:
2. States Parties shall collect appropriate information to enable
them to formulate and implement policies to give effect to this Convention.
To that effect they shall:
a) promote that information on persons with disabilities be included among
the indicators to asses the development of a country on areas such as human
rights, poverty, equity, health, education, employment and other relevant
areas;
b) ensure the homogeneity among State Parties, for calculating measures
and indicators, to be able to make international comparisons;
c) review periodically the new necessities of information required for strengthening
policies in favor of the rights of persons with disabilities;
f) Promote among non governmental organizations, the private and academic
sector and governmental organizations the development of research and studies
that allows the identification of areas of interest to persons with disabilities
that contributes to enhance their situation;
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THAILAND
Article 6
2. Lack of adequate disability statistics and data collection shall be in
no way a condition for not implementing this convention.
(This proposal may be considered as second paragraph of article 6)
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Non-governmental organizations
CHILDREN's RIGHTS ALLIANCE FOR ENGLAND
Article 6
Statistics and data collection
In order to formulate and implement appropriate legislation and 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,
or from parents, legal guardians or others with legal responsibility
for a child who is unable to give informed consent, should be 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;
(c) 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;
(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 enjoyment of human rights,
including political participation and their representation and inclusion
in the mass media and access to and enjoyment of inclusive
public services, (rehabilitation programmes - delete),
education, play and leisure facilities, housing and employment;
(f) Include the numbers of people with disabilities who are the
victims of crime, disaggregated according to age, sex and type of disability;
(g) Adhere to established ethics regarding respect for anonymity and confidentiality
in the collection of statistics and data.
INTERNATIONAL DISABILITY CAUCUS
Draft Article 6: Statistics and data collection
1. States Parties shall encourage actions for the collection, analysis,
maintenance, use and dissemination of information on the effective enjoyment
of human rights by persons with disabilities. States Parties shall ensure
that any such actions:
a) respect the right to privacy, the dignity and the right to free and full
informed consent of persons with disabilities;
b) adhere to ethics regulations and principles regarding respect of anonymity
and confidentiality;
c) are designed and implemented by or in partnership with diverse representative
organizations of persons with disabilities;
d) are carried out inclusively across different demographic populations
and take cultural and ethnic differences into account.
1. States parties shall ensure that the data collected:
a) is maintained only in a statistical format and integrated into the general
statistics of the country;
b) includes detailed information on access to public services, rehabilitation
programs, education, housing, employment, health care, training and social
security as well as the barriers faced by persons with disabilities to exercising
their rights;
c) is disaggregated, including by gender, age, indigenous populations, and
disability, respecting the person¹s choice of how to identify or describe
a disability.
3. States Parties shall assume the responsibility for the dissemination
of these statistics and ensure their accessibility to people with disabilities
and others.
4. States Parties shall promote international cooperation to compare the
data and to improve the collection of statistics and data information and
the implementation of obligations under this Article.
INTERNATIONAL SAVE THE CHILDREN ALLIANCE
Article 6
Statistics and data collection
Proposal
……The process of collecting and maintaining (statistical) information should:
(a) Respect the right to privacy, the dignity and the rights of persons
with disabilities, and the information collected about persons with disabilities
should be on a voluntary basis;
(e) Include detailed information on the realisation of their rights including
political and social participation, and access to public services, rehabilitation
programmes, education, housing, employment and play and leisure facilities;
(h) Include the numbers of people with disabilities who are victims of crime,
including crimes of violence, abuse and neglect in domestic, educational
and other institutional settings, disaggregated by age, sex and type of
impairment.
Rationale
Lack of data on the lives of disabled people and the extent to which they
are able to exercise their rights impedes progress in understanding the
legislative and policy frameworks necessary to promote non-discrimination
and equality of opportunity, or the resources necessary to achieve those
goals.
1 The amendment to paragraph (a) is designed to give recognition to the
fact that whether information is being provided by or on behalf of a person
with disabilities, the same principles should apply. Lack of capacity to
give consent to the collection of data should not undermine the right to
privacy and dignity of the individual concerned. In respect of disabled
children, parents, guardians or other persons with legal responsibility
will be empowered to provide that consent on the child’s behalf. In doing
so, they must have regard to Article 3 of the Convention on the Rights of
the Child, the best interests of the child, and Article 5, appropriate recognition
of the child’s capacities to give consent on their own behalf.
2 The amendment to paragraph (e) seeks to broaden the range of data to be
collected to enable governments to monitor the exercise of civil and political
as well as economic, social and cultural rights in respect of persons with
disability. It also extends the collection of data to rights of particular
concern to children.
3 The additional paragraph (h) proposes the extension of collection of data
to the experience of crime. There is a significant body of evidence indicating
that, for example, disabled children are disproportionately vulnerable to
both physical and sexual violence1 .
The Disability Awareness in Action violations database has evidence of individual
violations of the right to protection from all forms of violence relating
to 1.24 million people, including 252,000 children. This represents around
16% of the total number of violations, although disabled children only constitute
2-4% of the total disabled populations. Yet few governments are currently
collecting disaggregated data to enable them to identify the levels of risk
of disabled children to violence. Without this data, the experience of violence
and abuse remains unrecognised and can continue with impunity for the abusers.
Disabled children face significant difficulties in challenging violence
and abuse. Their social isolation, dependency on carers, low social status,
and widely-held discriminatory attitudes, combined with child protection
strategies, where they exist, which fail to address their needs, all serve
to render them more vulnerable to and less able to challenge abuse. It is
significant that in three recent studies of disabled children in Nepal,
Romania, and South Africa, the children all highlighted violence and abuse
as one of the most important rights violations to be addressed2
. A requirement to record and disaggregate statistics relating to violence
would provide invaluable data for governments seeking to protect the rights
of disabled children.
Footnotes:
1. see, for example, Report on the maltreatment of children with disabilities, Crosse, Kaye and Ratnovski, National Centre for on Child Abuse and neglect, Administration for Children and Families, US Department of Health and Human Services, Washington, 1992, and Violence and people with disabilities: A review of the literature, The Roeher Institute for the National Clearinghouse on Family Violence, Health Canada, 1994
2. see reports on Disabled Children in
Nepal, South Africa and Romania, Rights of Disabled Children/DAA, London
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LANDMINES SURVIVORS NETWORK
DRAFT ARTICLE 6 - STATISTICS AND DATA COLLECTION
SYNTHESIS OF PROPOSALS
In order to formulate and implement appropriate policies to protect and
promote the rights of persons with disabilities, States Parties shall facilitate
the collection, processing, storage and presentation of statistical data
relevant to the implementation of this Convention. In particular, States
Parties undertake to:
(a) ensure that the methods and procedures for the collection, processing,
storage and presentation of statistical data comply with internationally
accepted human rights norms and standards and ethical principles of statistics,
including the avoidance of undue intrusion, informed consent, protecting
the human rights of subjects, maintaining confidentiality of records and
prohibiting the disclosure of identities;
(b) ensure that disability statistics and data collection address the living
conditions of persons with disabilities, including access to public services,
rehabilitation programs, education, housing and employment;
(c) ensure that statistics and data are disaggregated, including by gender,
age and disability; and
(d) ensure that the design and implementation of data collection is done
in partnership with persons with disabilities and their representative organisations.
COMMENTS
The inclusion of a specific provision on disability data and statistics
received widespread support among delegations, though various suggestions
were made regarding the redrafting and restructuring of the article in addition
to the placement of the article within the Convention. There is much support
for data collection as an implementation measure in the UNSR. (Cf. UNSR,
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) States will likely engage in the collection,
processing, storage and presentation of statistics and data collection as
part of the development of national legislation and programs to implement
the Convention. Accordingly, the inclusion of this article is important
as a means of providing appropriate guidelines and to ensure that data and
statistics do, indeed, support measures to further implementation of the
Convention.
A number of delegations throughout the Ad Hoc Committee process have emphasized
the importance of ensuring that disability data and statistics is used to
advance and not violate the human rights of people with disabilities. Concerns
have likewise been expressed regarding the process by which such data is
gathered (e.g. Mexico, Costa Rica, Sierra Leone, Yemen, South Africa). There
are numerous guidelines and statistical techniques designed to meet obligations
to individual subjects. In particular, international guidelines outline
the following principles in relation to individual subjects of statistical
inquiry: (i) avoidance of undue intrusion; (ii) obtaining informed consent;
(iii) protecting the interests of subjects; (iii) maintaining confidentiality
of records; and (iv) inhibiting the disclosure of identities. These established
principles are more comprehensive than those included in the Working Group
Draft Text. (Cf. International Statistical Institute Declaration on Professional
Ethics, available at: http://www.cbs.nl/isi/ethics.htm; Fundamental Principles
of Official Statistics, available at: http://unstats.un.org/unsd/methods/statorg/FP-English.htm)
Draft Article 6 chapeau: The language is a slightly redrafted version of
the language in Article 6 of the Working Group Draft Text. The draft retains
the important language establishing the connection between statistics and
data collection and its purpose, which should be to advance the implementation
of rights as set forth in the Convention. It uses the phrase “collection,
processing, storage and presentation of statistical data” which is the established
terminology as reflected in international principles on statistics as well
as practice. (Cf. Fundamental Principles on Statistics, as submitted by
the UN Statistics Division, available at: http://unstats.un.org/unsd/methods/statorg/FP-English.htm)
In addition, the language is strengthened such that States are obliged to
comply with the provisions.
Draft Article 6(a) provides new language on the basis that a number of delegations
found the Working Group Draft Text repetitive in its handling of important
human rights and ethical principles and requiring consolidation. The new
text draws from the Working Group Draft Text, proposed modifications to
the text (EU) as well as material provided to the Ad Hoc Committee by the
UN Statistics Division (Fundamental Principles on Statistics, http://unstats.un.org/unsd/methods/statorg/FP-English.htm).
The text provided refers to existing human rights norms and standards as
well as established principles relating specifically to data collection.
Draft Article 6(b) outlines specific contexts that disability data and statistics
must address. The language is a slightly redrafted version of the Working
Group Draft Text, although it is responsive to proposals that expressed
concern regarding an exhaustive list (Algeria). Thus, the language provided
retains the examples of contexts where data should be sought, but makes
clear that the list is not exhaustive by using the term “including” prior
to the listing. It also introduces the term “living conditions” which is
consistent with the UNSR, Rule 13(1).
Draft Article 6(c) provides specific detail regarding the disaggregation
of disability data and statistics. The reference to gender-specific statistics
is in keeping with the UNSR, Rule 13(1) and was supported by several delegations
(e.g. Lebanon). Additional references to disaggregation according to disability
and age are in keeping with statistical methodology and application.
Draft Article 6(d) introduces the principle of participation in the design
and implementation of disability statistics and data collection, requiring,
in particular, the involvement of people with disabilities and their representative
organizations. The concept of “partnership” appears elsewhere in the Convention
text and meaningfully incorporates the principle of participation into the
specific contexts of data collection. (“New Zealand’s View of a Convention
on the Rights of Disabled People”, para. 28) Deleted from the original Working
Group Draft Text is the reference to ensuring the participation of “other
relevant stakeholders” in the design and implementation of data collection.
As noted by many delegations during the course of the Ad Hoc Committee process,
this Convention is about the rights of people with disabilities and their
participation in society. It is not about the rights or participation of
“other relevant stakeholders.”
Structural placement of the Article on Data and Statistics: While the text
still appears as Draft Article 6, in keeping with the placement allocation
by the Working Group, this Article is more appropriately placed elsewhere
in the Convention, in a section outlining supporting measures of implementation,
in line with the suggestion of the EU. Notably, the UNSR places Rule 13
(Information and Research) in the section entitled “Implementation Measures.”
In addition, it is commonplace in other treaty contexts to place articles
concerning data collection in a separate section containing articles addressing
measures to enhance the implementation of the Convention. (Cf. Framework
Convention on Climate Change, Article 5)
PEOPLE WITH DISABILITY AUSTRALIA
Article 6:
Statistics and Data Collection
We support the inclusion of Article 6 in principle but note that statistics
and data collection are not appropriately characterised as a human right.
They represent operational activities that should be included with other
operative provisions at the end of the convention among those measures that
relate to the monitoring and implementation of the convention.
We believe that 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, we suggest
that the opening paragraph of this article could be improved in four ways.
1. By incorporating direct references to ‘planning’ and ‘evaluation’ as
activities supported by effective statistics and data collection.
2. 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.
3. 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.
4. By clarifying that statistics are to be collected in relation to the
‘incidence’ of impairment and disability – the oblique reference to ‘information
on disabilities’ leaves the obligation too uncertain.
The revised paragraph would therefore read:
In order to formulate, implement, and evaluate appropriate policies and plans to protect and promote the rights of persons with disability, States Parties shall collect, analyse, codify and publish statistics and other information in relation to the incidence of impairment and disability and the effective enjoyment of human rights by persons with disability.
We also believe there should be an amendment to paragraph d of the article
to require statistics and data collection to be disaggregated into specific
population groups (eg by gender and by racial, ethnic, linguistic and religious
minorities) and locality, to assist in effective planning and targeting
of social assistance.
It is generally accepted that 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.
For this reason we recommend the inclusion of an additional paragraph in
this article promoting the development, through international cooperation,
of consistent statistical and data collection methodologies between States.
States Parties to this convention shall take progressive measures within a framework of international cooperation to harmonise disability statistics and data collection.
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.
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