United Nations collection of national disability statistics

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

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

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

6. National data collection on disability statistics

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

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

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

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

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

15. Uganda, 1991 & 2001 censuses 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? 2001 1991 1991: Is anyone in the household in the census night disabled?

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

17. Impact of different approaches on the level of disability prevalence • Comparing countries worldwide: • 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 • Other factors are also considered: • Mode of data collection, respondent, coverage of institutions, use of neutral terminology, minimum time duration for disability

18. Type of question

20. Number of items included in the question

21. Mode of data collection and respondent

22. Conclusions • Four main types of questions were identified • 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 • No other factor was found to be influential

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 • Other relevant factors are difficult to measure: • How to account for training of the enumerators? • How to account for translation?

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

25. THANKS! Comments… Questions…