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

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) after Apply purpose after using cut off points

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

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

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.

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

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.)

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)

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

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

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

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

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