Viewing Measures via the Matrix: Do we have what we need? Angela Me With Jennifer Madans, Barbara Altman, and Beth Rasch Ottawa, January 2003 Second meeting Washington Group on Disability Statistics

Beginning the Process of Applying the Matrix A 20 minute presentation cannot possibly provide all the ways to apply the matrix. This presentation will highlight some specific examples from the matrix. This is just the beginning of the process.

Goals of Presentation 1. Examine the matrix - what type of general measure is needed for different purposes? 2. Focus on population measures. 3. Compare what is needed with the existing measures. 4. Summarize the features of the existing measures 5. Highlight the gaps 6. Where do we go from here –suggestions and discussion

Identifying What is Already Available We are at the beginning stages of matching what is in use today with the cells of the matrix In the following discussion of what is available to match what is needed, general impressions of questions will be made with a few specifics. It would be useful if you point out what you feel are national census questions from your country that are appropriate to different categories.

Equalization of Opportunity A general measure would identify people at risk for limitation in participation (a demographic indicator). A related but different measure addresses actual participation levels (an outcome indicator).

Equalization of Opportunity What is Needed? General measure to identify the population at risk: Based on Activity and Functioning, or Impairment If activity based questions are used, it is important to include questions about the use of assistive devices or other methods of accommodation. Need an independent measure of role performance.

Equalization of Opportunity What is available?  As a demographic the questions would need to be comprehensive, those currently available are not. Australia has a much larger list of impairments and conditions than most countries.  Many countries are using separate questions that include some overall Participation type questions.

Equalization of Opportunity What else is available? One of the most popular types of questions are combination questions that include impairments, activity and participation without being explicit. Participation questions have been used as a shortcut method to identify the population at risk.

Financial Support What is needed? Financial support is necessary when an individual cannot generate sufficient income due to some aspect of the disablement process.  No or reduced Participation in a work role is the key to requiring financial support. Additionally, income levels also need to be part of the overall census or survey measurement.

Financial Support What is needed?  Identify people who are not/cannot participate in work. Financial support program eligibility criteria are often defined according to Functioning and/or Impairment, and are very specific.

Financial Support What is available Measures based on activities and impairments, do not focus specifically on activities associated with major role participation. For example, self care is measured at a very basic level and doesn’t get at activities that would be important to the work role. Many countries have measures that are very legalistic and incorporate medical verification. Using the number of people who qualify for benefits as the general measure of disability may be misleading.

Need Assessment What kind of Needs? Need for services requires specific rather than generic information since there is real variation in the nature of the need. So one simple measure will not be sufficient Rehabilitation Long Term Care Transportation Accessible Housing

Need Assessment What is needed Long term care: Self care/independence are key predictors of this need. Transportation: This is a much more complicated need to measure. Functioning is a basic key predictor of this need, although Impairment could be an indicator of risk of need. Environment is an important component. Need can be distributed unevenly so assessment for small areas makes census measures appealing.

Need Assessment What is available?Long term care There appears to be broad acceptance of an Activities of Daily Living approach to this type of need. However, there is no agreement on whether the questions should ask difficulty only, if a person needs help, or if they get help

Need Assessment What is available? Transportation  There are few if any measures that get at factors that would identify transportation issues. The usual impairment, function and activity indicators would identify persons at risk of needing transportation, but unless there are other questions in the census about transportation in general, there is nothing to point to at this point.

Population Monitoring What is needed? General Measure of Participation. Using this measure alone would identify people with limitations in participation due to the disablement process. The number identified would not reflect the population at risk, nor could it be used as an demographic. It is useful to also include Environment data with which to evaluate the Participation measure.

Summary of Features of Existing Measures The majority of measures available are based on Body Function and Body Structure aspects (particularly those used in developing countries). An increasing number of countries use global measures based on activities and participation.

Summary of Features of Existing Measures Sometimes two concepts are mixed in one single measure (for ex. there is a question asking difficulties in seeing, walking and working). This makes the interpretation and the relevance of the results murky (since the characteristics of population identified with such measures are conceptually unclear, it is not easy to interpret results).

Summary of features of existing measures Duration: Frequently the duration of the limitation is not specified. Often there is an implicit reference to very severe and long standing types of disabilities. In few cases duration is not specified because the intention is to measure both long and short term disabilities (more in developed countries). When duration is specified, there is a reference to long standing or long term conditions. Few specify the duration of six months.

Summary of Features of Existing Measures Response categories: The response categories included in questions used to identify persons with disabilities are in general dichotomous. Very few measures (Canada, Australia, Brazil, and Eurostat) use multiple categories (for example, a lot of difficulties, some difficulties, no difficulties). Details in the number of answer categories is useful for interpretation, but it is more relevant for measurement purposes (non dichotomous categories increase the validity of the questions).

Summary of features of existing measures Health condition: There is a mixed picture in linking disabilities to an health condition (…because of an health condition, do you have …). The reference to a health condition is very often linked to measures that use an Activity and Participation approach (when an A and P approach is used usually there is a reference to an health condition).

Added Consideration Objective of this group is to facilitate international compatibility in a general question for use in a census. This may lead to developing a simpler single standard rather than combination questions which appear to cover all aspects, but incompletely. How to incorporate environmental measures.

Gaps Environment: Information on environment is important to address for almost all the purposes of measurement highlighted in the matrix Some of the personal and social contexts in which a person lives are measured through questions unrelated to disability that are part of the data collection (in censuses for example information on living arrangements is often collected).

Gaps There are few countries that assess the use of assistive devices and personal assistance to complement information on Activity and Participation and capacity and performance.

Future work There are no measures that can fit all purposes. There is a trade-off between the need for: Global measures that identify a broad population with disabilities The possibility to differentiate different sub- populations The possibility to collect information on several aspects of the disability(severity, types, causes) The ability to address multiple purposes while satisfying the need to simple and short questions may not be possible.

Future work Many general questions originally developed as screeners and not used for prevalence estimates. Need to evaluate what you get if you use these various types of questions and whether the populations overlap and by how much. It is also important to evaluate what the various forms of general questions mean for comparability cross-nationally.

Future work Need to identify and monitor testing being done cross-nationally. An activity measure can be designed building on the analysis and testing done in Canada, U.S., Australia, Brazil, Europe and elsewhere. However, more work should be done in developing countries to make sure that new general measures are relevant their purposes.

Future work We have identified three basic types of measures that are currently in use: Mostly Impairment based - good for specific program planning. Demographically based – encompassing multiple factors, impairment, function and activity. Outcome oriented – assume reported problems or limitations in participation are a result of impairments, and environment, leaving us with little detail.

Future Work As we bring together the empirical and conceptual matrices – Add in the testing results as they develop – Simplify the language and conceptualization of components we are seeking Clarify the standard Hopefully we have found the path

Conclusion What are the next steps to prepare for Brussels?