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

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

SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Contemporary concepts of disability / functioning Human functioning Conceptualized as the interaction of people with potentially limiting health characteristics and their environments 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 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 Health Condition ( disorder/disease ) Functioning: interactive and multidimensional Environmental Factors Personal Factors Body function&structure (Impairment ) Activities(Limitation)Participation(Restriction) Source: ICF, WHO, 2001

SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Functioning: a continuum Not an “all or nothing” concept 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) 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 The only minority group to which anyone can belong

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

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

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

SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Definitional issues All of this complexity leads to definitional problems 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 Allow for a range of disability There is a wide range of severity There is a wide range of severity Yes/No questions tend to not identify those with mild or moderate disabilities 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 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 Severity of disability Different cutoffs may be used for different purposes 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 Identifying more severe disability requires a large sample since the subpopulation is small

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

SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 Walking or Climbing Steps N% No Difficulty Some Difficulty A Lot of Difficulty Unable230.7 Severity of disability: WG pre-test data from Vietnam

SPECA Regional Workshop on Disability Statistics, Dec 13-15, 2006 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 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 Some disabilities are particularly stigmatizing Disability has different meanings in different cultures; it can include infertility for men; it can include orphans, etc. 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 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 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 Stigma Censuses in many developing countries ask “Do you have a disability?” but… 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