Response to paper on extended measurement sets

1. Response to paper on extended measurement sets Margie Schneider HSRC South Africa

2. Purpose of extended measure • Stated preference is for same (chosen) as for general measure (Census) = equalisation of opportunities but also.. • Identify as broad a subpopulation as possible…..as many people with a disability as possible • How about • collecting data on functioning (A and maybe some P as well) • Apply purpose after using cut off points

3. Purpose (contd) • assessing at individual level for eligibility, service provision, intervention programme – need specific purpose measure (social security vs free health care vs universal design) • At population level, don’t want to collect different data for different purposes • General question purpose – data collection seems the same whether it be for pop functioning of equalisation of opportunities • Purpose to do with analysis rather than data collection

4. Relationship of general Qs and extended set • Seems reasonable to have a close link • If a country uses both – link data sets (e.g. ABS model of capturing different populations but merging the two to get full understanding of pop functioning and experience of disability) • If some countries use only general and others only extended sets - ? To try and get comparability

5. Is extended in fact not just more detail on: • Number of domains (e.g. make effort to ask about psychological issues and other less visible impairments and related AL) • Response options to get more range of severity • Link to variables such as services needed and received, environmental design features that facilitate Participation not only in work, education and social inclusion • Also look at poverty, access to services and effect on response, etc.

6. Use of general in extended set • As a screener for detailed questions if done as one survey • Used in Census with post censal survey

7. Specific needs • Issues of war could be captured by asking about cause with more detailed response options to capture cause of war vs others • Individual domain analysis vs complex indicator of disability – can be done in analysis by creating new variables which combine domains (1 vs 2 vs 3 vs n domains affected, etc.)

8. Characteristics of extended set • Extended set gives opportunity to ask about whole process of disability • Cause (be prepared for ‘don’t know’) and HC • Impairment • AL • PR • EFs • Quality of life and satisfaction • Disadvantage (educational, economic, social exclusion)

9. Wording as a characteristic and methodological issue • Have difficulty because of a long terms mental or physical problem or other health condition…… • ?reinforces notion that disability / difficulty is caused by impairment rather than interaction of HC and context

10. Malawi survey on disability • General screening questions • Detailed interview with full 2 level domains of A/P asking about capacity and performance • Measure of AL and PR for population • Ask about E in general term after all A/P domains covered • Increase in population identified from 2% to over 4% - something is working

11. Users and (not) abusers of data • Crucial to get all users on board from first stage of deciding what to collect • Include disabled peoples’ organisations • Capacity building to understand purposes and uses of data – not get caught up in either a medical model data need or in narrow minority definition of disability • Linked to defining and using the term ‘disability’ – to be unpacked • Get all levels to understand about defining disability – not one but many

12. Methodological issues • Use of term ‘disability’ (or equivalent) in introduction to survey • Qualitative work on understanding how people understand questions on • Disability • Functioning • Difficulty walking • Difficulties due to old age • Issues of visibility of impairment

13. Conclusion (my opinion) • Same type of measure as general • More detailed • Link populations identified • Ideally need both general in census and extended set as module in survey or as full survey • Understand how wording can perpetuate notions of what disability is • Unpack definition with stakeholders