Transcript 1. Funding

Human rights approach applied to
statistics and disability
WORSHOP ON DATA COLLECTION AND STATISTICS ON
DISABILITY IN EUROPEAN COUNTRIES
Ankara, 5th October 2012
Javier Güemes
EDF deputy director
I. UN CRPD
Article 1 Purpose
The purpose of the present Convention is
to promote, protect and ensure the full
and equal enjoyment of all human rights
and fundamental freedoms by all persons
with disabilities, and to promote respect
for their inherent dignity.
Persons with disabilities include those
who have long-term physical, mental,
intellectual or sensory impairments
which in interaction with various barriers
may hinder their full and effective
participation in society on an equal basis
with others.
Article 31 Statistics and data collection
1.
2.
3.
States Parties undertake to collect appropriate
information, including statistical and research
data, to enable them to formulate and
implement policies to give effect to the present
Convention. The process of collecting and
maintaining this information shall:
(a) Comply with legally established
safeguards, including legislation on
data protection, to ensure confidentiality
and respect for the privacy of
persons with disabilities;
(b) Comply with internationally accepted
norms to protect human rights
and fundamental freedoms and ethical
principles in the collection and use
of
statistics.
The information collected in accordance with
this article shall be disaggregated, as
appropriate, and used to help assess the
implementation of –States Parties’obligations
under the present Convention and to identify
and address the barriers faced by persons with
disabilities in exercising their rights.
States Parties shall assume responsibility for
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dissemination of these
I. UN CRPD (2)
the UNCRPD includes provisions on:
equality and non-discrimination, accessibility, liberty of
movement and nationality, access to justice, freedom from
violence, independent living and life in the community,
personal mobility, education, employment, health, social
protection, international cooperation, civil protection,
combating violence, amongst others, as well as the
participation of persons with disabilities through their
representative organisations in decision-making processes, and
mainstreaming of women and children with disabilities.
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II. UN Resolutions - data on persons with disabilities
The Commission for Social Development
concluded that there is a need “to improve
data and statistics on disability.”
It is the most recent of a string of calls from
the Member States to swiftly step up efforts
to make persons with disabilities and the
barriers that they face count.
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III. Challenges
Current challenges in measuring the barriers, which persons with disabilities
face:
 Hardly any data on persons with disabilities, particularly on various barriers;
 Convention on the Rights of Persons with Disabilities (CRPD) and its social
model of impairment (emphasis on attitudinal and other barriers) not
utilized;
 Scant involvement of persons with disabilities in designing disability
surveys;
 Low awareness among statisticians about disability and social model;
 General low status of disability in-spite of 15% of population directly
affected.
IV. Tools
Existing tools on measuring “disability”
While the Washington Group and the WHODAS 2.0
cover some aspects of data on persons with
disabilities, the CRPD – with a stand-alone provision on
statistics (Article 31) – provides an opportunity to
develop these instruments further, particularly to
ensure that social and other barriers are adequately
taken into account.
V. Results
Results of a recent survey on the most pressing issues related to disability data
In an effort to support the discussion on improving data collection and ensuring
a higher quality of the data, persons with disabilities and their representative
organizations were asked to provide their views on the most pressing concerns
related to disability statistics and data collection. Some of the key findings of
the survey were:
 Low quality of existing data on disabilities;
 Disabilities are poorly described & lumped into the general category
vulnerable groups;
 Mostly focus on individual impairments rather than general social barriers;
 Lack of unified approach in collecting data related to persons with
disabilities;
 Cultural/religious issues and threshold values not internationally
comparable;
 Stigma and discrimination based on disability & association;
 Cost of exclusion and benefit of inclusion not currently addressed
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VI. Causes for exclusion
Main causes for exclusion of persons with disabilities
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Social attitudes
Understanding of
disability
Lack of financial
support
Lack of inclusive
design
Lack of transportation
Lack of access to
support
Other causes
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VII. Cultural aspects
Cultural aspects, which are not sufficiently reflected in existing
disability survey tools
 The reasons/causes for disabilities and impairments respectively
 Definition/description and perception of disability and impairments
respectively
 Care giving responsibility in different countries and cultures
 Difficult to accommodate many cultural issues in disability surveys,
such as;
 Ethnicity & gender
 Traditional beliefs & stereotypes
 Marriage & relationship issues
 Wording of questions, e.g. use of steps for mobility, which are not
ubiquitous
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VIII. Placement in measurement
Social Barriers and Exclusion – Placement in Measurement Tools
The chart shows that most respondents believe that questions on social barriers and
exclusion should be included in not only targeted questionnaires and national statistics,
but also in larger census - albeit to a lesser degree.
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Targeted questionnaire
National statistics
Census
Other
Barriers
Exclusion
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IX. Challenges in existing disability surveys
Challenges with the existing disability survey tools: WHO.DAS 2.0 &
Washington Group
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•
•
•
 •
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Still based on the medical model of disability
Not based on a rights-based approach
Some of the less obvious disability types can be difficult to identify
WHO.DAS 2.0 is very detailed and complex, while Washington
Group are too broad and simple – a compromise is needed, which is
acceptable to a majority of users
There are no guidelines for determining threshold/cut-off values
Gender and child/youth issues are not taken into account
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X. Washington Group
Mechanisms that facilitate or impede participation in complex
activities, such as environmental and attitudinal barriers to equitable
access. Environmental barriers or facilitators can exist on several
levels:
• Micro-environment: defined in terms of personal and technical
assistance (that which follows the person wherever they go, for
example wheelchair, glasses, or personal attendant)
• Meso-environment: refers to the environment beyond the person
(accessibility is facilitated or hindered based on, for example,
transportation infrastructure, service provision at the local level, or
attitudes of others)
• Macro-environment: refers to affects on a regional, societal or
national scale, such as policies, legislation, or general societal
attitudes and practices
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X. Washington Group (2)
The next questions ask about difficulties you may have doing certain activities
because of a HEALTH PROBLEM.
1. Do you have difficulty seeing, even if wearing glasses?4
2. Do you have difficulty hearing, even if using a hearing aid? 4
3. Do you have difficulty walking or climbing steps?
4. Do you have difficulty remembering or concentrating?
5. Do you have difficulty (with self-care such as) washing all over or dressing?
6. Using your usual (customary) language, do you have difficulty communicating,
(for example understanding or being understood by others)?
Each question has four response categories: (1) No, no difficulty, (2) Yes, some
difficulty, (3) Yes, a lot of difficulty and (4) Cannot do it at all. The severity scale is
used in the response categories in order to capture the full spectrum of difficulty
in functioning from mild to severe.
Washington Group believes that focusing on measuring functioning in core
domains is in contrast to approaches that are based on impairments or deviations
or loss in various bodily structures.
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X. The cost of inclusion and benefit of inclusion
Measuring the cost of exclusion & benefit of inclusion.
Some research is emerging on this issue, but more is
needed
 Economic formulas should be developed and used to
determine the costs and benefits
 The social model of disability should be incorporated
in these measurements
 Cost-benefit is usually based on the charity/medical
model, and should be revised
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THANKS
[email protected]
Data obtained with the support of the
Danish Organisation of Disabled People (DPOD)
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