Comments on the ‘Proposed content of census questions for international use’

1. Comments on the ‘Proposed content of census questions for international use’ Xingyan WenRos Madden Australian Institute of Health and Welfare

2. Focus on the ICF domains • What are we using, what are we excluding and at what level are we using the ICF? • Impairments versus Activity limitations • Difference in the estimates of disability prevalence between the two approaches • Different focuses for census questions and survey questions? • A mix of impairment questions and activity questions?

3. General and specific purposes of measurements • Equalisation of opportunity: a fundamental goal for people with a disability • Multiple specific purposes for individual countries • Consider some specific purposes to assist in the development of census questions • Issues on relationship between general census questions and extended sets of questions

4. Flexibility with the choice of domains to meet special needs • A core set of domains and several variations from the core set for specific purposes. • Use of existing census questions to develop the choice of domains and questions • Use the results of existing census questions as a resource to assist in designing and field testing.

5. Inclusion of specific ICF domains: self-care and communication • Self-care is not only related to people living in the institutions • People with disability arising from mental conditions may be captured in self-care • Communication (broader than seeing or hearing) could also capture mental and intellectual disability

6. Applying ICF common language and concept • For example: • The terms ‘wilful action or activity’ and ‘role behaviour’ should be replaced with ICF terms and concepts • Use the ICF term ‘washing oneself’ is more multicultural than ‘bathing’ which fewer cultures do • The inclusion of ‘climbing steps’ may not be meaningful in communities where steps are rare

7. Multiple response categories • Assist in obtaining information on severe disabilities • Severe disability is more stable and less likely to be affected by variations in perceptions and attitudes • Focusing on severe disability may increase comparability. • The Yes/No response category is equally problematic as those multiple response categories.

8. Consistent response categories across all domains • Different words are used for different domains: ‘serious trouble’ (for seeing/blind and hearing/deaf), ‘serious difficulty’ (for walking/climbing steps), and ‘serious problems’ (for remembering/concentrating) • An additional word ‘usually’ is introduced for walking/climbing steps, and remembering or concentrating. • There is no universal definition of ‘serious’ • It is desirable to keep the response categories consistent across all the domains.

9. Qualifiers to capture long-term and severe disabilities • Without a duration qualifier, the estimated prevalence may include many people with short-term restrictions or limitations. • May generate difficulties in international comparisons • Severity example: rates of vision long-term conditions: • 1998 ABS Disability survey: 2% • 2001 ABS National health survey: 51%