1. Internationally Comparable General Disability Measures
Barbara M. Altman
National Center for Health Statistics
U.S.A.
September 19-20, Rio de Janeiro, Brazil

2. September 19-20, 2005 Rio de Janeiro, Brazil
Session Objective
Explain how the questions were developed
Understand the limited choices associated with developing census questions
Understand the product that results from the question set
September 19-20, Rio de Janeiro, Brazil

3. Key Components Involved in Development of Questions
Purpose of data collection in a census context
Conceptual domains relevant to the measurement purpose
Operationalization of domains to provide measurement tools
September 19-20, Rio de Janeiro, Brazil

4. Selection of purpose/s
3 major classes of purposes at aggregate level
Service Provision
Monitoring functioning in the population
Assess equalization of opportunities
2 criteria for selection of a purpose
Relevance
Feasibility
September 19-20, Rio de Janeiro, Brazil

5. Purpose: Service provision
Seeks to identify those with specific needs, usually the most serious problems
Requires detailed information about the person and the environment
Influenced by the organization and structure of service organizations within a particular culture
September 19-20, Rio de Janeiro, Brazil

6. Purpose: Monitoring functioning in the population
Seeks to identify all those with activity or participation limitation
Response comparability problematic since participation is culturally and environmentally determined
Population reporting work limitation
September 19-20, Rio de Janeiro, Brazil

7. Purpose: Equalization of opportunities
% Employed
Seeks to identify all those at greater risk than the general population for limitations in activity or participation
Disability as a demographic
September 19-20, Rio de Janeiro, Brazil

8. Selecting Primary Purpose
All 3 purposes were accepted as valid
Equalization of opportunity was identified as the primary purpose of concern
Decision made to develop questions to meet this purpose
Monitoring the level of functioning was seen as a secondary purpose
September 19-20, Rio de Janeiro, Brazil

9. Source of Concepts for Measurement: ICF Model
Health Condition
(disorder or disease)
Body Functions & Structure
Activity
Participation
Environmental Factors
Personal Factors
Source: ICIDH-2, 1999
September 19-20, Rio de Janeiro, Brazil

10. Moving from concept to measurement
ICF as the conceptual model
Common point of reference
Common vocabulary
Does not provide measurement questions or a way to measure the concepts
September 19-20, Rio de Janeiro, Brazil

11. Matching Purpose with Concept
In order to address this purpose, we need to start by identifying persons who are at greater risk than the general population of experiencing restrictions in participating in role activities in the absence of any accommodation
The source of our conceptual starting point is drawn from one of the primary domains of the ICF
September 19-20, Rio de Janeiro, Brazil

12. Selecting the Concept to Measure: The Body
Body Function and Body Structure
Identifies type of impairment
Impairments do not necessarily reflect levels of capacity or performance of the person
They locate the anatomical part and the physiological functioning
Person is not necessarily “at risk”
We chose not to use this concept for our purpose
September 19-20, Rio de Janeiro, Brazil

13. Selecting the Concept to Measure: Participation
Participation – involvement in a life situation
Represent problems an individual may have being involved or integrated into their community
Involves the coordination of both physical and cognitive functioning to accomplish multiple tasks within and environment.
Is too culturally bound to serve our purpose.
September 19-20, Rio de Janeiro, Brazil

14. Selecting the Concept to Measure: Activity
Activity – the execution of an action or simple task
Activity is the deliberate execution of an action (walking) or task (dressing)
Activities are building blocks of participation
Activity limitations are a good and basic identifier of ‘risk’ of limitations in participation in culturally defined roles.
September 19-20, Rio de Janeiro, Brazil

15. Locating Risk in the ICF Model
Health Condition
ACTIVITY
Body Functions & Structure
Participation
Environmental Factors
Personal Factors
Source: ICIDH-2, 1999
September 19-20, Rio de Janeiro, Brazil

16. Levels of Measurement Necessary to Capture Activity and Participation
Mobility, seeing, hearing, learning
Level 1
Willful Action
Bathing, dressing, making meals, laundry
Specific Tasks
Level 2
Visiting with friends, going out to dinner
Individual Organized Activity
Level 3
Working at a job, being a parent, citizenship roles
Cultural Role Participation
Level 4
Level of Complexity
Type of Measure
Measure Examples
September 19-20, Rio de Janeiro, Brazil

17. Measurement of equalization of opportunities
Locate the definition of disability at the most basic level of activity/participation
This level is associated with the ability or inability to carry out basic functions at the level of the whole person (i.e. walking, climbing stairs, lifting packages, seeing a friend across the room)
September 19-20, Rio de Janeiro, Brazil

18. Possible types of questions
Questions that measure various domains of functioning such as mobility, cognition, sensory functions, etc.
A qualifier would need to ascertain that the action was accomplished without human or mechanical assistance
September 19-20, Rio de Janeiro, Brazil

19. Possible Question Choices
Mobility
Walking
Climbing stairs
Bending or stooping
Reaching or lifting
Using hands
Sensory
Seeing
Hearing
Communicating
Understanding
Speaking
Cognitive functions
Learning
Remembering
Making decisions
Concentrating
Emotional functioning
Interpersonal interactions
Psychological well-being
September 19-20, Rio de Janeiro, Brazil

20. Criteria for Inclusion of Domains
Cross cultural comparability
Suitability for self-report
Parsimony
Validity across various methodological modes
September 19-20, Rio de Janeiro, Brazil

21. Number of Domains Selected
Workgroup in agreement that Walking, Seeing and Cognitive functioning are core domains to be included
Earlier discussions have indicated that 3-4 questions are the maximum available in many censuses
Limitations on number of domains a function of space and mode – do we want to prioritize a domain list so that questions are available as space and other restrictions are relaxed?
September 19-20, Rio de Janeiro, Brazil

22. Draft questions for Censuses (general disability measure)
Do you have difficulty seeing even if wearing glasses?
Do you have difficulty hearing even if using a hearing aid?
Do you have difficulty walking or climbing stairs?
Do you have difficulty remembering or concentrating?
Do you have difficulty with (self-care such as) washing all over or dressing?
Because of a physical, mental, or emotional health condition, do you have difficulty communicating (for example understanding others or others understanding you)?
a) No - no difficulty c) Yes - a lot of difficulty
b) Yes - some difficulty d) Cannot do at all
September 19-20, Rio de Janeiro, Brazil

23. September 19-20, 2005 Rio de Janeiro, Brazil
Decision Elements
Introductory clause
Response options
Use of a time qualifier
Use or non-use of assistive devices
September 19-20, Rio de Janeiro, Brazil

24. What We are Not Identifying
Are we screening or making estimates?
Screening spreads the net widely – attempts to reduce false negatives by accepting false positives.
Estimates are more focused on specific areas and should be more reliable.
We are seeking to represent a continuum of experience in an either/or context. We can’t represent the total continuum.
We have chosen not to provide a screening function since the continuum of disability is artificially dichotomized in various cultures at various points – for example, developed countries policies generally consider less limited functioning as part of disability, while developing countries do not have that luxury.
We are seeking to measure actions and tasks that would be considered disability in almost any cultural setting, i.e. the more obvious situations.
September 19-20, Rio de Janeiro, Brazil

25. Meeting Products and Information
Executive summary of meetings, presentations, and papers posted on the Washington Group website:
Publication of key papers in a special issue of Research in Social Science and Disability due this Fall
September 19-20, Rio de Janeiro, Brazil

26. Willful action - reflects the individual’s will to carry out basic volitional bodily operations at the level of the organism (whole person); deliberate use of basic senses and body actions

27. Specific tasks - The execution of a group of willful actions by an individual. It is an indicator of a series of related or more complicated actions necessary to accomplish an objective

28. Organized activity - the accomplishment of a variety of specific tasks and willful actions in order to complete an activity that is socially recognized or defined in a culture; requires some form of interaction with others

29. Role participation - an individual’s involvement in performing recognized cultural roles