United Nations Economic Commission for Europe Statistical Division Measuring Disability Statistically A Challenging Task! Angela Me, Chief Social and Demographic Statistics Section

- UNECE Statistical Division Bishkek, December 2006 Slide 2 Disability in Central Asia (1999) New registered cases of disability per 100,000 population Source: Highlights on Health, WHO-Europe

- UNECE Statistical Division Bishkek, December 2006 Slide 3 Disability in Central Asia (Tajikistan)

- UNECE Statistical Division Bishkek, December 2006 Slide 4 Disability in Central Asia (Uzbekistan)

- UNECE Statistical Division Bishkek, December 2006 Slide 5 Disability in SEE and CIS countries Source: Children and disability in transition in CEE/CIS and Baltic States, UNICEF 2005

- UNECE Statistical Division Bishkek, December 2006 Slide 6 Disability in SEE and CIS countries Statistician in Georgia: “Formerly families tried to hide cases of disability, while at the present time they hope to gain help by registering their children” Source: Children and disability in transition in CEE/CIS and Baltic States, UNICEF 2005

- UNECE Statistical Division Bishkek, December 2006 Slide 7 Disability in SEE and CIS countries Disability statistics focus on people who are registered: in social security records Disability registers Medical records The Soviet concept of disability relied upon a set list of medical conditions for defining disability

- UNECE Statistical Division Bishkek, December 2006 Slide 8 Disability in SEE and CIS countries Institutions that deal with disability are mostly: Ministries of health Ministries that manage Social Security System Why should National Statistical Office be concerned about disability statistics? What role can National Statistical Offices have to improve disability statistics?

- UNECE Statistical Division Bishkek, December 2006 Slide 9 Disability rates in the world

- UNECE Statistical Division Bishkek, December 2006 Slide 10 Concept of disability in CIS countries Countries around the world use a different definition of disability Who is a person with disability? Tajikistan: a person is defined as a person with physical, intellectual or mental abnormality Uzbekistan: a person who is in need of aid because he/she has physical or mental problems. Daily activities such as moving, orientation, speech, behavioural control, and/or work on one’s own are completely or partially limited.

- UNECE Statistical Division Bishkek, December 2006 Slide 11 Concept of disability in the world Who is a person with disability? Netherlands: a person who is limited in his or her functioning as a result of a physical or mental impairment. Such limitation is of a lasting or permanent nature, which means that people with disability are threatened in their personal development Sweden: a person with a permanent physical, mental or intellectual limitation of a person’s functional capacity that is a consequence of an injury or illness that existed at birth, arose thereafter or may be expected to arise.

- UNECE Statistical Division Bishkek, December 2006 Slide 12 Concept of disability in the world Who is a person with disability? United Kingdom: a person who has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to­day activities.

- UNECE Statistical Division Bishkek, December 2006 Slide 13 Concept of disability in the world Who is a person with disability? UN Convention (2006): 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.

- UNECE Statistical Division Bishkek, December 2006 Slide 14 Concept of disability in the world There are no right or wrong definitions of disability (they depend on the purpose) What a society define as “disability” reflects its conception of a normal and socially functional human being Since social values and norms change overtime, the notion of disability has changed overtime and in different countries

- UNECE Statistical Division Bishkek, December 2006 Slide 15 Concept of disability in the world From a Medical Definition of disability – based on the medical condition as an individual pathology To A concept of disability based on the consequences of diseases (functioning) and/or social participation

- UNECE Statistical Division Bishkek, December 2006 Slide 16 Concept of disability in the world The workshop focuses on the new concepts of disability It aims at helping to broaden the view related only to medical conditions/social security benefits National Statistical Offices have a major role in measuring this new concept of disability

- UNECE Statistical Division Bishkek, December 2006 Slide 17 Concept of disability in the world

- UNECE Statistical Division Bishkek, December 2006 Slide 18 Concept of disability in the world A broader concept of disability can be measured only through population- based data collection because the focus is on the individual’s experience However – in order to be able to work with COMPARABLE statistical information, methodological aspects are of great importance

- UNECE Statistical Division Bishkek, December 2006 Slide 19 Concept of disability in the world The role of National Statistical Offices in measuring disability in: Health Interview surveys Living Standard Measurement Surveys Population Census Other on-going surveys

- UNECE Statistical Division Bishkek, December 2006 Slide 20 Content of the workshop Different purposes, different definitions/approaches to disability International definitions and classification Measurement of disability based on international standards:  Sources  Methods Information needed on persons with disabilities Washington Group and the role of Central Asian countries in this international work

- UNECE Statistical Division Bishkek, December 2006 Slide 21 Together we will deal with… Problems connected with the sensitivity of the concept “Disability”  In defining WHAT should be measured  In developing the content of questionnaires  In developing the techniques of interviewing  In training interviewers  In participating to work out good methodology internationally