Issues Related to Disability Measurement: Special considerations

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Issues Related to Disability Measurement
Special considerations

• Daniel Mont
• Disability and Development Team
• The World Bank

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Part 1 Special considerations

• Factors that complicate measurement of disability

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Special considerations

• Contemporary concepts of disability
• Interactive
• Multidimensional
• Dynamic
• Definitional issues
• Severity of disability
• Continuum of functioning
• Multiple disabilities
• Stigma

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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

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Functioning interactive and multidimensional
Health Condition (disorder/disease)
Source ICF, WHO, 2001
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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

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Continuum of activity limitations
Activity limitation score
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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

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Conceptual summary

• Disability no longer defined according to ones
  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

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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

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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

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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

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Severity of disability
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Severity of disability WG pre-test data from
Vietnam
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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

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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