1. September 19-20, 2005 Rio de Janeiro, Brazil Internationally Comparable General Disability Measures Barbara M. Altman National Center for Health Statistics U.S.A.

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

3. September 19-20, 2005 Rio de Janeiro, Brazil 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

4. September 19-20, 2005 Rio de Janeiro, Brazil 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

5. September 19-20, 2005 Rio de Janeiro, Brazil 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

6. September 19-20, 2005 Rio de Janeiro, Brazil 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

7. September 19-20, 2005 Rio de Janeiro, Brazil Purpose: Equalization of opportunities  Seeks to identify all those at greater risk than the general population for limitations in activity or participation Disability as a demographic % Employed

8. September 19-20, 2005 Rio de Janeiro, Brazil 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

9. September 19-20, 2005 Rio de Janeiro, Brazil 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

10. September 19-20, 2005 Rio de Janeiro, Brazil 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

11. September 19-20, 2005 Rio de Janeiro, Brazil 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

12. September 19-20, 2005 Rio de Janeiro, Brazil 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

13. September 19-20, 2005 Rio de Janeiro, Brazil 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.

14. September 19-20, 2005 Rio de Janeiro, Brazil 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.

15. September 19-20, 2005 Rio de Janeiro, Brazil Locating Risk in the ICF Model Health Condition Body Functions & Structure Participation Environmental Factors Personal Factors Source: ICIDH-2, 1999

16. September 19-20, 2005 Rio de Janeiro, Brazil Levels of Measurement Necessary to Capture Activity and Participation Level of Complexity Level 1 Level 2 Level 3 Level 4 Type of Measure Willful ActionAction Specific Tasks Individual Organized Activity Cultural Role Participation Participation Measure Examples Mobility, seeing, hearing, learning Bathing, dressing, making meals, laundry Visiting with friends, going out to dinner Working at a job, being a parent, citizenship roles

17. September 19-20, 2005 Rio de Janeiro, Brazil 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)

18. September 19-20, 2005 Rio de Janeiro, Brazil 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

19. September 19-20, 2005 Rio de Janeiro, Brazil 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

20. September 19-20, 2005 Rio de Janeiro, Brazil Criteria for Inclusion of Domains Cross cultural comparability Suitability for self-report Parsimony Validity across various methodological modes

21. September 19-20, 2005 Rio de Janeiro, Brazil 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?

22. September 19-20, 2005 Rio de Janeiro, Brazil Draft questions for Censuses (general disability measure) 1) Do you have difficulty seeing even if wearing glasses? 2) Do you have difficulty hearing even if using a hearing aid? 3) Do you have difficulty walking or climbing stairs? 4) Do you have difficulty remembering or concentrating? 5) Do you have difficulty with (self-care such as) washing all over or dressing? 6) 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 difficultyc) Yes - a lot of difficulty b) Yes - some difficultyd) Cannot do at all

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

24. September 19-20, 2005 Rio de Janeiro, Brazil 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.

25. September 19-20, 2005 Rio de Janeiro, Brazil Meeting Products and Information Executive summary of meetings, presentations, and papers posted on the Washington Group website: http://www.cdc.gov/nchs/citygroup.htm Publication of key papers in a special issue of Research in Social Science and Disability due this Fall

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