Sources of Disability Data

1. Sources of Disability Data Angela Me, Chief Social and Demographic Statistics Section

2. An example of populations with disability Body Functions and Structure Limitations Visual impairment Hearing impairment Participation restrictions Working disability/Benefits Activity limitations

3. Counting/Identifying the different population groups What statistical sources can we use to identify and count the different population groups?

4. Only limited forms of disabilities can be identified using administrative registers Body Functions and Structure Limitations Severe impairments Participation restrictions Working disability/Benefits Activity limitations

5. Only limited forms of disabilities can be identified using administrative registers Body Functions and Structure Limitations Severe impairments Participation restrictions Working disability/Benefits Activity limitations

6. Counting/Identifying the different population groups • Some of the body functions and structure limitations can be measured through administrative registers • Activity limitations and participation restrictions can be accurately measured only through population-based methods (household surveys and population censuses) because they can assess the individual’s functioning as a whole person, as opposed to those function and structure of his/her body parts which may not be relevant for administrative purposes

7. Counting/Identifying the different population groups • In principle, population-based data methods can identify people according to all the ICF domains because they can measure the individual’s experience of the disability process in all its components • The more population groups we want to identify, more information we need to collect in the data collection methods • Not all population-based methods can identify all the relevant populations

8. Population-based data collection • Population census • Specialized disability surveys • Other household surveys • Health examination surveys Each of these data sources can identify all or only some of the population groups relevant for studying disability

9. Population Census No history in Central Asia in the collection of disability data through the census BUT Long tradition in other parts of the world

10. Population Census Source: Archives of the 1811 Census, General Register Office of Scotland

11. Population Census Source: Archives of the 1811 Census, General Register Office of Scotland

12. Population Census

13. Population Census Advantages • Provide data for small areas and small population groups • Data are not affected by sampling errors • Comparison between persons with and without disabilities can be done for education, employment and other relevant characteristics collected in the census

14. Population Census Limitations • Only short/simple questions can be included therefore it can identify only one population group relevant for disability (one ICF domain) • Only basic socio-demographic characteristics for people with disability can be collected • Often institutionalized population are covered only through a short questionnaire • It is very costly • Extend use of proxy • Disability has low priority – limited training • Data only every 10 years

15. Population Census

16. Population Census • Countries with similar statistical systems existing in Central Asia used the census to collect data on disability: • Bulgaria • Estonia • Hungary • Lithuania • Poland

17. Population Census Why is it used in many countries to collect disability data? • For some countries it is the ONLY source of information • For some countries it is a complementary source to provide disability data for small areas/population groups

18. Population Census • Disability is a non-core topic in the Conference of European Statisticians Recommendations Recommendations for the 2010 Census Round

19. Population Census • In very few countries it is used to screen for a follow-up specialized survey (Canada)

20. Household Surveys • Specialized disability surveys • Other surveys (disability modules) • Health Interview Survey • Living Standard Measurement Survey • Labour Force Surveys, Victimization surveys • Multi-purpose surveys • Examination surveys

21. Household Surveys Source: Tajikistan LSMS 2003

22. Household Surveys Source: Kyrgyzstan LSMS 1993

23. Household Surveys Source: Kyrgyzstan LSMS 1998

24. Household Surveys Advantages • Greater flexibility in the depth and range of topics • Greater flexibility in designing a proper module to identify persons with disabilities • If existing in the statistical plan, they are easier to use by including a disability module • Greater control over the conditions of observation and the interview, better training

25. Household Surveys Limitations • Limited ability to analyze prevalence rates for local areas/small population groups • Often populations in unusual circumstances, such as institutionalized persons, homeless, refugees or nomadic populations, are not covered • Greater control over the conditions of observation and the interview, better training

26. Household Surveys • Potentially, specialized disability surveys are the most comprehensive tools to describe the disability process since they can implement the most extensive modules. They can identify the disability experience according to all the ICF domains and they can collect the most extensive set of information on the persons with disabilities • On-going surveys (like censuses) have the advantage of providing information to compare people with and without disabilities but have the disadvantage of employing short measures/questions and therefore limiting the identification of persons with disabilities to one domain

27. Household Surveys However, the group of persons with disabilities that can be identified depends on the instrument/questions used more than on the source Bad/narrow questions used in specialized disability surveys identify a narrow process of disability A good instrument/module included in the census can identify the population with disabilities which goes beyond the people in need for social security and can address relevant policy questions such as the equalization of opportunities

28. Disability prevalence rates by data collection methods Source: DISTAT

29. Household Surveys Health surveys are also a good source of disability data Could they be potentially used in Central Asia to improve the disability data currently available?