The Disability Measurement Matrix

1. The Disability Measurement Matrix Barbara M. Altman Jennifer Madans Elizabeth Rasch Angela Me Margaret Mbogoni Elena Palma

2. Orientation and Process • Matrix as it evolved from first meeting of Washington City Group • Instructions and expectations • Meetings at the U.N. • Resultant draft

3. Overview of Matrix Presentations • Part 1 – Explanation of the conceptual model • Barbara Altman

4. Overview of Matrix Presentations • Part 2 – An examination of the empirical reality in place now • Margaret Mbogoni & Malin Synneborn • Elizabeth Rasch • Elena dePalma

5. Overview of Matrix Presentations • Part 3 – Using the matrix, identifying the gaps and other uses • Jennifer Madans

6. 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

7. Mapping the Space • 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 DisabilityMeasurement Matrix is to develop a tool to guide the choice of measures appropriate to the purpose of the data collection.

8. Matrix Components • 3 major elements of basic matrix • Conceptual model – • Work in progress, to be shared here • Actual examples – • Work in progress, to be shared here • Ideal examples – • Future project, for European meeting and beyond

9. Matrix Components • The conceptual model is made up of three parts, A, B & C. • Part A represents the variety of purposes for measurement . In graphic format it is represented by the Y axis.

10. Matrix Components • Part B represents the substantive aspects of the questions that enhance the understanding of the concept of disability. In graphic format it is represented by the X axis. • Part C represents the characteristics of the questions that specify details about either the concept of disability or the format of the questions that can influence the data that is gathered. In graphic format it is represented by the Z axis.

11. Visualizing the Matrix Components Part A-Purpose Part C - Characteristics Part B – ICF Domains

12. Part A – Y Axis • Data collection for a variety of purposes can be conceptualized at two levels of collectivity: • Individual - Data needs to reflect the differences as well as similarities between and among persons with disabilities. Data collected with a focus on its use relative to the individual. • Population – Data reflects the aggregate level of measurement, detail is lost in an effort to reflect the nature of the group as a whole.

13. Part A – Y Axis • Within the two basic components the Y axis represents a variety of categories of purposes for which data may be collected including: • Equalization of Opportunity • Financial Support • Needs Assessment • Prevention • Research and monitoring

14. Purposes at the Individual Level : Examples • Equalization of opportunity at the individual level is associated with providing access to services that will level the playing field for persons with limitations. Data provides information that will reflect needs of an individual or group of individuals. • Personal assistant services. • Advocacy training. • Access to legal services.

15. Population Level Purposes • Needs assessment at the population level provides information to assist with policy development and decisions about issues on a broader scale, such as: • Accessible transportation • Location and types of rehabilitation • Housing units

16. Part B – X Axis • In the first section of the Measurement Matrix the elements of the X axis represent the components of the ICF as translated into measurement language or regularly used elements of disability measurement. • Environment elements represented by. • Immediate physical world and social world measures. • Assistive technology which provides accommodation. • Participation elements represented by. • Involvement in social role activities such as those associated with work, family and recreation. Participation implies taking on social roles.

17. Part B – X Axis (continued) • Activity limitations represented by • Tasks or the substructure elements of role participation • Body and structure elements represented by • Functional limitation measures that reflect abilities to coordinate the body and structure to accomplish tasks • Impairments or pathology represented by indicators of conditions or residual damage to body structure.

18. Part C – Z Axis • The second table, Part C, contains the Z axis. Part B reflected characteristics of the individual and their situation. In Part C, most of the units are associated with characteristics of the question or further characteristics of the elements of Part B. • Duration of a circumstance. • Number of categories included in the response choices. • Specificity of items

19. Taking a Closer Look • Each different Y-axis general purpose category is explained briefly. • Equalization of Opportunity – In the population context refers to the development of programs to improve life circumstances. • For each example of a purpose category, the relevance of each type of ICF category is briefly explained across the row. • Purpose of measurement to protect civil rights (see page 3) – 5 types of indicators are relevant for measurement.

20. Examining a Cell from Parts A and B Participation Major role participation is the concern here, can the person be self-supporting Financial Support

21. Adding Part C to Parts A and B Duration Participation as related to Financial Support How long has the work role limitation lasted?

22. Examining a Row – Parts A,B&C • Identifying the research question tracking the success of implementation of civil rights legislation • Part A - Equalization of Opportunity, Purpose 1 • Part B – All categories of substantive measures are seen as contributing to information needed for policy formation and population trend monitoring • However, impairment if the only type of measure referred to in the legislation itself • Part C – Severity level is a characteristic of the measure to consider. For financial support is becomes an essential element, but for a civil rights measure, is it?

23. Culturally Relevant Subheadings

24. Translating the Matrix into an International Tool • Are the generalized purpose categories (Y-axis) universal? • What can be added? • Should we limit the matrix to the population aspects for international purposes? • What concepts or characteristics (X-axis) do we want to include? Are some aspects of the ICF unsuitable for survey use or for international use? • Are there international differences that would impact on question formats or characteristics.

25. Looking Toward the Future • Do we want to identify 1-2 purposes that a general measure can satisfy? • Do we want to identify the questions we have, from all sources, that address those 1-2 purposes and select those that appear most promising? • What other steps can we take to narrow this search?