Viewing Measures via the Matrix: Do we have what we need

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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

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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.

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Goals of Presentation

• Examine the matrix - what type of general measure
  is needed for different purposes?
• Focus on population measures.
• Compare what is needed with the existing
  measures.
• Summarize the features of the existing measures
• Highlight the gaps
• Where do we go from here suggestions and
  discussion

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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 .

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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).

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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.

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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.

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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.

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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.

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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.

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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
  doesnt 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.

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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

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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.

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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

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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.

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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.
  

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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.

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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).

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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.

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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).

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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).

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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.

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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).

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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.

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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.

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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.

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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.

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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.

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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

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Conclusion

• What are the next steps to prepare for Brussels?