Human rights approach applied to statistics and disability WORSHOP ON DATA COLLECTION AND STATISTICS ON DISABILITY IN EUROPEAN COUNTRIES Ankara, 5 th October 2012 Javier Güemes EDF deputy director

I. UN CRPD Article 31 Statistics and data collection 1.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. 2.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. 3.States Parties shall assume responsibility for the dissemination of these 2 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.

3 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. I. UN CRPD (2)

II. UN Resolutions - data on persons with disabilities 4 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.

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. III. Challenges

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 7 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

VI. Causes for exclusion 8

VII. Cultural aspects 9 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

10 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. VIII. Placement in measurement

IX. Challenges in existing disability surveys Challenges with the existing disability survey tools: WHO.DAS 2.0 & Washington Group 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 11

12 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 X. Washington Group

13 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. X. Washington Group (2)

14 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 X. The cost of inclusion and benefit of inclusion

15 THANKS Data obtained with the support of the Danish Organisation of Disabled People (DPOD)