1. Proposed Purpose of an Internationally Comparable General Disability Measure Jennifer H. Madans, Barbara M. Altman, Elizabeth K. Rasch – NCHS Malin Synneborn, Jerry Banda & Margaret Mbogoni – UN Angela Me – UNECE & Elena DePalma - ISTAT

2. Wasington Group, Brussels, Belgium Background Washington Group Objectives  Develop a small set(s) of general disability measures to provide information on disability worldwide  Recommend extended set(s) of items to measure disability as components of population surveys / supplements  Address methodological issues associated with disability measurement

3. Wasington Group, Brussels, Belgium Next Steps Developed in Washington Complete a matrix matching the purpose of measurement with question characteristics. Evaluate measures currently in use.

4. Wasington Group, Brussels, Belgium Matrix as Map to Intersection of Purpose and Measurement Disability measurement is multidimensional like the phenomena itself. Not every measure is appropriate for every purpose, nor is a single measure always sufficient. Objective of the The Disability Measurement Matrix was to develop a tool to guide the choice of measures appropriate to the purpose of the data collection

5. Wasington Group, Brussels, Belgium Ottawa Meeting: Introduction of Matrix Matrix Objectives: Put some order into the discussion of disability measurement Help clarify the purpose of data collection in order to identify appropriate measures Understand choices being made when time, expenses and respondent burden limit number of questions

6. Wasington Group, Brussels, Belgium Purpose of This Presentation Major objective is to identify the primary purpose for asking general census questions on disability in the international context. Discuss implementation of that purpose through measurement.

7. Wasington Group, Brussels, Belgium 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

8. Wasington Group, Brussels, Belgium Defining a Purpose for Census Measurement of Disability Since “Disability” is multidimensional we can not know the single “true” disabled population. Matrix defines 3 broad purposes about which a society may be concerned when measuring “disability.” Those purposes are related to different dimensions of “disability” or different conceptual components of the model.

9. Wasington Group, Brussels, Belgium Three Major Classes of Purposes at Aggregate Level 1. To provide services, including the development of programs and policies for service provision and the evaluation of these programs and services 2. To monitor the level of functioning (umbrella term) in the population. 3. To assess equalization of opportunities.

10. Wasington Group, Brussels, Belgium Purpose Dictates Type of Question Service Provision – seeks to identify those with specific needs, usually for the most serious problems. Monitoring Populations – seeks to identify all those with activity or participation limitation. Equalization of Opportunity – seeks to identify all those ‘at greater risk’ than the general population of activity or participation limitation without accommodation.

11. Wasington Group, Brussels, Belgium Purpose 1: Providing Services Provision of services at the population level includes, but is not limited to, transportation, rehabilitation, providing assistive devices, long term care. Requires detailed information about the person and the environment, as in the case of rehabilitation. Types of questions would include: Need for help of various kinds Environmental factors such as safety issues, problems with access.

12. Wasington Group, Brussels, Belgium Purpose 2: Monitoring Level of Functioning in the Population Monitoring level of functioning includes estimating rates and analyzing trends. The level of functioning in the population is considered a primary health and social indicator which characterizes the status of the population. Types of questions to include: Participation in common activities such as work, family and church.

13. Wasington Group, Brussels, Belgium Monitoring Disability Prevalence: Population Reporting Work Limitation

14. Wasington Group, Brussels, Belgium Purpose 3: Assessing Equalization of Opportunity 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 performing specific tasks or participating in social activities. Type of questions that identify this group include: Identification of difficulties in basic functioning such as walking, seeing, hearing.

15. Wasington Group, Brussels, Belgium Disability as a Demographic : Population with Limitations in Functioning

16. Wasington Group, Brussels, Belgium Criteria for Selection of a Purpose for Census Measurement of Disability Relevance - Is the purpose of relatively equal importance across countries with respect to policy? Feasibility – Is it possible to collect the proposed information using a comparable general disability measure that includes a small set (1-4) of census-like questions?

17. Wasington Group, Brussels, Belgium Applying Criteria to Purpose 1 Relevance: Service provision is an essential activity of governments and service organization – relevance to all cultures is unquestionable. Feasibility: Level of detail of data necessary is not workable in a Census format. Nature of service provision and types of service are highly variant across cultures.

18. Wasington Group, Brussels, Belgium Applying Criteria to Purpose 2 Relevance: Monitoring the health trends in a society are useful to all societies for tracking changes in health problems and successes or failures of public health programs. Feasibility: In an international context, response comparability can be a problem, particularly related to participation measures which are culturally and environmentally determined.

19. Wasington Group, Brussels, Belgium Applying Criteria to Purpose 3 Relevance: Equalization of opportunity is an ultimate goal of all countries, was endorsed at earlier WG meetings and is an objective of the UN. Feasibility: If we conceive of disability toward the most basic elements of activity, without tying it to participation, we can limit the number and types of questions necessary thus enhancing feasibility.

20. Wasington Group, Brussels, Belgium Recommendation The best approach to developing internationally comparable census questions is an Equalization of Opportunity approach. Identifies a broad subpopulation which can be further examined via extended survey sets Provides more versatility. Provides ability to partially fulfill another purpose (2), i.e. monitor limitations in functioning Can be used as a demographic.

21. Wasington Group, Brussels, Belgium Disability as a demographic Equalization of opportunity W D / D = W Ð / Ð Monitoring functioning in the population D – W D / Total population ≈ proportion of population reporting work disability

22. Wasington Group, Brussels, Belgium Purpose of Measurement In order to elaborate on the recommended purpose we will discuss: The relationship of measurement to our broader conceptual schemes. Terminology. The measurement appropriate to the purpose of Equalization of Opportunity.

23. Wasington Group, Brussels, Belgium Concepts, Terminology and Measurement Using the ICF as the conceptual model underlying our work, gives us a common point of reference and a common vocabulary. Since the ICF does not provide measurement questions or a way to measure the concepts, we also need to provide a model and language for measurement.

24. Wasington Group, Brussels, Belgium The Path from Concept to Data: The Role of Measurement

25. Wasington Group, Brussels, Belgium Transitioning from Concept to Measurement Our job is to figure out how to move from the conceptual model to the data we want and need and how to do that through measurement. The ICF model has provided us with the conceptualizations of body structure and function, activity, participation and environment as the main elements associated with disability. The detailed classification scheme provides the operational definitions of these concepts. The missing pieces include decisions on the relevant conceptual component and the measurement instrument.

26. Wasington Group, Brussels, Belgium ICF Components of Activity and Participation Most of the types of measurements that are commonly used in surveys now fall into the ICF conceptual component of activities and participation. The operationalization of these concepts based on the classification scheme is very detailed. The classes involve measurement at a minimum of three or four levels of observation. These levels of observation or measurement provide a range from the most simple individual activity to the more complex participation in a culturally defined social structure.

27. Wasington Group, Brussels, Belgium Moving From Activity to Participation: Levels of Measurement First Level: Individual willful action – whether or not the individual’s body system or organs work, it requires willful action to walk, read, listen, etc. Given the capacity for willful action the remaining levels of measurement increase in complexity and are dictated by the social/cultural structure of the society. They include specific task actions; organized activity and role participation.

28. Wasington Group, Brussels, Belgium Forms of Measurement Level 1 Willful Action Questions Mobility Seeing/Hearing Learning Speaking Level 2 Specific Task Questions Bathing Dressing Taking Medications Doing laundry Level 4 Individual Organized Activity Questions Going out to dinner Driving a car Visiting with friends Voting Level 4 Role Participation Questions Working Having a job Being a parent Church Member Female Levels of Measurement to Capture Activity and Participation

29. Wasington Group, Brussels, Belgium Focus on Level 1 Recommendation of Equalization of Opportunity Purpose located the definition of “disability” at the most basic level of activity/participation. Measurement of the most basic level of activity/participation is associated with the ability or inability to take willful action, that is to carry out basic bodily operations at the level of the whole person.

30. Wasington Group, Brussels, Belgium Willful Action Measures Refer to an individuals movement or use of bodily parts in a deliberate, intentional manner to accomplish a physical or intellectual objective such as threading a needle, listening to conversation, picking something off the floor. Common survey questions that satisfy this level of measurement include questions about climbing steps, lifting packages, seeing a friend across the room.

31. Wasington Group, Brussels, Belgium Possible Question Types Based on the purpose and the level of measurement we have recommended, the types of questions that could be used in a census would include: Questions that measure various functioning domains, mobility, cognition, sensory, etc. A qualifier for such questions would need to ascertain that the willful action was accomplished without assistance, human or mechanical.

32. Wasington Group, Brussels, Belgium Possible Question Choices Mobility: Walking Climbing stairs Bending or stooping Reaching or lifting Using Hands Sensory Seeing Hearing Emotional functioning Basic interpersonal interaction Psychological well-being Communicating Understanding Speaking Cognitive Functions Learning Remembering Making decisions Concentrating

33. Wasington Group, Brussels, Belgium Limitations of the Census Format Limited space of Census questionnaire forces hard choices. Checked domains reflect types of questions that would identify largest population and those which would be the most culturally compatible. Using these domains would allow some flexibility for additional culturally relevant questions for the specific country

34. Wasington Group, Brussels, Belgium Conclusion – Recommendations Restated Focusing on an Equalization of Opportunity Purpose allows us to develop a demographic approach to understanding disability. The connection between disability and participation can then be made during data analysis and allows for comparison between persons with and without disability. Monitoring the effectiveness of programs and policies to promote full participation can be monitored easily and more accurately.