1. 1 United Nations collection of national disability statistics from population and housing censuses and related national surveys and administrative registers Fifth Meeting of the Washington Group on Disability Statistics, Rio de Janeiro, 21-23 September 2005 Maria Martinho and Jeremiah Banda United Nations Statistics Division http://unstats.un.org/unsd/demographic

2. 2 Outline of the presentation The Demographic yearbook system (DYB) The Demographic yearbook system (DYB) Results of the DYB pre-testing Results of the DYB pre-testing Impact of different approaches on the level of disability prevalence Impact of different approaches on the level of disability prevalence The design of the DYB questionnaire The design of the DYB questionnaire

3. 3 The Demographic Yearbook System (DYB) Collects, compiles and disseminates official statistics on a wide range of topics Data have been collected from national statistical authorities since 1948 A set of questionnaires is dispatched annually by the United Nations Statistics Division to over 230 national statistical offices Regular collection of human functioning and disability statistics starting by the end of 2005

4. 4 DYB collection of disability statistics UNSD Pilot Questionnaire on Human Function and Disability Statistics Tested in 44 countries Data: Population with and without disabilities Population with and without disabilities by school attendance Population with and without disabilities by activity status All tables by age, sex and urban/rural residence Metadata: Capture methodological factors that can influence disability prevalence rates: Question wording, coverage, mode of data collection, etc

5. 5 Results of the DYB pre-testing Tested in 57 countries/areas Africa (21) Asia (21) South America (6) North America (8) Oceania (1)

6. 6 National data collection on disability statistics Number of countries/areas No collection 4 Census20 Surveys5 AR3 Census & surveys 11 Census & AR 3 Surveys & AR 3 Census, surveys & ARs 8

7. 7 Results from the pre-testing: Censuses 41 countries/areas collect disability data in censuses Questions available for 31 countries: Most census questions are either (i) generic questions or (ii) impairment based (28 countries/areas) Only three countries use neutral language and activity limitations 5 countries use one question for the household

8. 8 Results from the pre-testing: Censuses Bahamas, Fiji, Mauritius and Zimbabwe 1. Are you blind? If Yes, do you have any difficulty with the following activities…? If Yes, are you blind? 1. Do you have any difficulty with the following activities…? Uganda Inverted funnel

9. 9 Results from the pre-testing: Censuses Other questions: Type of disability: 29 countries Cause of disability: 7 countries Institutionalized population covered in 26 countries Face-to-face interview in 34 countries One respondent per household: 25 countries

10. 10 Results from the pre-testing: Surveys 27 countries/areas collect disability data in surveys Questionnaires tend to be longer Design of the sample can be complex Some countries are using weighting schemes for the questions

11. 11 Results from the pre-testing: Surveys Institutional population Covered: 3 Not covered: 8NA: 16 Mode of data collection Face-to-face interview: 18NA: 8 Respondent One respondent per household: 7 Self-response: 8NA: 8

12. 12 Impact of different approaches on the level of disability prevalence Countries included: 29 countries Countries included: 29 countries Participated in the pre-testing of the UNSD Pilot questionnaire Participated in the pre-testing of the UNSD Pilot questionnaire Provided information on census Provided information on census Extra information was gathered from DISTAT, country reports and manuals, NSOs websites and WG country reports Extra information was gathered from DISTAT, country reports and manuals, NSOs websites and WG country reports Preliminary study: Preliminary study: Look at two census in the same country Look at two census in the same country Demographic, social and cultural background is similar Demographic, social and cultural background is similar

13. 13 Dominican Republic Do you have any of the following disabilities? - Blind, deaf, mute, physical dsabilities, does not have disabilities. In 2001, +Blind of one eye, +Loss or limitation in moving arms/legs

14. 14 Zambia Is....... blind? Deaf/dumb? Crippled? Mentally retarded? Are you disabled in any way?

15. 15 Uganda, 1991 & 2001 censuses 2001 1991 1991: Is anyone in the household in the census night disabled? 2001: Do you have any difficulty in moving, seeing, hearing, speaking or learning, that has lasted or is expected to last 6 months or more?

16. 16 Preliminary conclusions Factors that may affect the level of disability prevalence: Factors that may affect the level of disability prevalence: Number of domains includedNumber of domains included Use of activity based questionsUse of activity based questions Use of generic questions provides low level of prevalence Use of generic questions provides low level of prevalence

17. 17 Impact of different approaches on the level of disability prevalence Comparing countries worldwide: Comparing countries worldwide: Need to account for different age-sex distributions across countries: use world standardized prevalence rate Need to account for different age-sex distributions across countries: use world standardized prevalence rate Census questions on disability were found to be of four main types Census questions on disability were found to be of four main types Other factors are also considered: Other factors are also considered: Mode of data collection, respondent, coverage of institutions, use of neutral terminology, minimum time duration for disability Mode of data collection, respondent, coverage of institutions, use of neutral terminology, minimum time duration for disability

18. 18 Type of question

19. 19 NigeriaIranSri LankaPalestineMexicoHungarYDominican RepublicCosta Rica ICFPrevalence rate0.6%1.0%1.4%2.4%2.5%4.5%5.2%6.5% CodingNumber of items53771011107 b210blindY YYYY b210blind in one eYe YY b210partial blindness Y b230deafYY YYY b230partial deafness Y b310-399dumbY YYY crippledY s730-750loss of limb Y Y b7356paralYsis Y b750-b799loss of movement of legs Y b750-b800loss of movement of arms Y disabilities in hands/legs Y phYsicallY disabled YY YYY mentallY retardedYYYYYYYY psYchosis Y mental disabilitY YY mental disorder Y e1251use of assistive device to hear Y b1671defective speech Y b210sight/seeing YY Y b230hearing YY Y d330speaking/talking YY b750-b799moving YYY d450walking Y b750-b799moving legs Y b710moving fingers/arms Y Y d445use hands/arms Y

20. 20 Number of items included in the question

21. 21 Mode of data collection and respondent

22. 22 Conclusions Four main types of questions were identified Four main types of questions were identified Question on activity limitation and participation restriction lead to the higher rates Question on activity limitation and participation restriction lead to the higher rates Mode of data collection and respondent seem to have an effect when generic questions are used Mode of data collection and respondent seem to have an effect when generic questions are used No other factor was found to be influential No other factor was found to be influential

23. 23 Limitations of the study The conclusions are limited by what was provided by countries; e.g. few countries in our study used scaled responses The conclusions are limited by what was provided by countries; e.g. few countries in our study used scaled responses Other relevant factors are difficult to measure: Other relevant factors are difficult to measure: How to account for training of the enumerators? How to account for training of the enumerators? How to account for translation? How to account for translation?

24. 24 Impact on the UNSD Pilot questionnaire How to capture the impact of measurement? How to capture the impact of measurement? Should UNSD account for survey and ARs measurement? Should UNSD account for survey and ARs measurement? If yes, how to reflect the design and evaluate the quality of the data? If yes, how to reflect the design and evaluate the quality of the data? Should the questionnaire request cause of disability? Should the questionnaire request cause of disability?

25. 25 THANKS!Comments…Questions…