Issues Related to Disability Measurement: Special considerations

1. Issues Related to Disability Measurement: Special considerations Daniel Mont Disability and Development Team The World Bank SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

2. Part 1: Special considerations Factors that complicate measurement of disability SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

3. Special considerations • Contemporary concepts of disability • Interactive • Multidimensional • Dynamic • Definitional issues • Severity of disability • Continuum of functioning • Multiple disabilities • Stigma SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

4. Contemporary concepts of disability / functioning Human functioning • Conceptualized as the interaction of people with potentially limiting health characteristics and their environments • Not solely an individual attribute • Biological, environmental, and socially constructed components • Multidimensional • Complex theoretical models map the interaction of conceptual elements that constitute the definition of disability SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

5. Body function&structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors Functioning: interactive and multidimensional Health Condition (disorder/disease) SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Source: ICF, WHO, 2001

6. Functioning: a continuum • Not an “all or nothing” concept • Disability is “a set of characteristics everyone shares to varying degrees and in varying forms and combinations” (Zola, 1993) • The only minority group to which anyone can belong SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

7. Continuum of activity limitations SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Activity limitation score

8. Functioning: dynamic • Functioning influenced by the environment • People generally encounter different environments over the course of a day • Environments can change over time • Assistive technologies are evolving • Functioning can change over time • Episodic conditions • Recovery • Decline SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

9. Conceptual summary • Disability no longer defined according to one’s physical impairment • Disability thought of as a process • Approach shifts from fixing or repairing a deficit to the removal of barriers • Equality, accessibility, inclusion and human rights are fundamental goals • Shift from a medical to a socio-environmental realm SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

10. Definitional issues • All of this complexity leads to definitional problems • Different terms used with the same meaning • Same term used with different meanings • Presence of health conditions, impairments, limitations in body structures and functions, and limitations in activities and participation are all used to characterize “disability” SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

11. Allow for a range of disability • There is a wide range of severity • Yes/No questions tend to not identify those with mild or moderate disabilities • Collecting a range of disability allows for more detailed analysis and for multiple uses of the data SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

12. Severity of disability • Different cutoffs may be used for different purposes • For civil rights purposes, you would want to include a broad population, i.e. everyone who could potentially benefit from equalization of opportunities • For estimating needs for nursing homes or home care, you may only want to identify people who need assistance with activities of daily living • Identifying more severe disability requires a large sample since the subpopulation is small SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

13. Severity of disability SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

14. Severity of disability: WG pre-test data from Vietnam SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

15. Stigma • Disability is loaded term in any culture; it may bring shame on the individual or the household, so people may not want to identify themselves in this way • Some disabilities are particularly stigmatizing • Disability has different meanings in different cultures; it can include infertility for men; it can include orphans, etc. • People with severe difficulty may not identify themselves as disabled if concerned about stigma; others identify even if only moderately disabled for political impact • Use of the term ‘difficulty’ with concrete domains of functioning moves away from loaded terms SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006

16. Stigma • Censuses in many developing countries ask “Do you have a disability?” but… • People think of disability as very serious and may not report minor or moderate disabilities • “Disability” creates shame so people may not want to identify themselves in this way • If people with disabilities have successfully accommodated, they may not report limitations • People think of disability relative to their expectations of normal functioning so it may undercount the elderly SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006