Workshop on Improving Disability Data for Policy Use
23-26 September 2003, Bangkok, Thailand

Report on Washington City Group on Disability Statistics

Text version of a Powerpoint Presentation
Presented by Jennifer Madans on 23 September 2003, 11:00am

Slide 1

Report on Washington City Group on Disability Statistics

Jennifer Madans
National Center for Health Statistics
Centers for Disease Control
United States
Washington City Group on Disability Statistics

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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

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Areas of agreement

• It is important and possible to craft internationally comparable general disability measures
• Multiple purposes require multiple general measures
• Short and long set(s) of measures that are inter-related are needed
• ICF model will be used as a framework in developing disability measures

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Areas of agreement

Minimal requirements for a disability measure:

• Focus on the activity dimension of the ICF
• Clear link to purpose
• Flexible, conceptual translation
• Specification of limitations of measure(s)
• Specification of how personal assistance / device use will be treated in relation to the measure

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First Step - Development of Measurement Matrix

• 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

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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 Disability Measurement Matrix is to develop a tool to guide the choice of measures appropriate to the purpose of the data collection.

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Matrix Components

• The matrix is made up of three parts
• Part A represents the variety of purposes for measurement . In graphic format it is represented by the Y axis.
• 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.

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Matrix Components

• 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 are gathered. In graphic format it is represented by the Z axis

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Visualizing the Matrix Components

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Linking purposes of measurement with question content and characteristics

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Second Step - Census Questions

• Agreed first question/s needed for Censuses
• Potential Purposes of Census questions
• Provision of Services
• Monitoring Level of Functioning of Population
• Equalization of Opportunity

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Purpose Dictates Question Type

• Service Provision - seeks to identify those who require specific services
• Monitoring Population - seeks to identify all those with activity or participation limitation
• Equalization of opportunity - seeks to identify all those 'at greater risk' of activity or participation limitation

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Purpose - Service Provision

Types of questions would include:

• ADLs
• IADLS
• Vision and Hearing
• Need for help
• Person /environment fit

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Characteristics of Resulting Data

• Service Provision measures allow for tracking those in need of specific types of services, e.g. those most seriously limited.
• Monitoring policy changes with these data also requires information about the services received and demonstrates changing patterns of service needs

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Purpose - Monitoring Population

• Types of questions needed to include the wider population
• Limitations in functioning (seeing;walking;remembering, etc.)
• Limitations in self care
• Limitations in activity and participation

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Data for Monitoring Trends

• Using measures of participation can demonstrate what proportion of the population continues to experience restrictions in work and other activities
• Using the participation limitation measures does not allow the observer to directly evaluate the successes created by policy change
• Evaluate after accommodation

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Examples of Appropriate Questions

• Are (you or Is person) limited in the kind or amount of work (you/they) can do because of a physical, mental or emotional problem?
• Are (you or Is person) limited in any way in any activities because of physical, mental or emotional problems?

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What is being measured?

Disability prevalence - Reported Work Limitation

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Focusing on Work Limitations Does Not Reveal Success - Group that moves to No Work Limitation

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Purpose - Equalization of Opportunity

• Types of questions that identify persons who are 'at high risk' to experience activity/participation limitations
• Limitations in functioning (seeing; walking; remembering, etc.)
• Use of assistive devices; other accommodations

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When Monitoring Population Trends

• The number of disabled persons is used as the numerator of a rate/percent.
• Disability status is evaluated after accommodation

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When Evaluating Equalization of Opportunity

• Disability status is used to categorize the population so that the characteristics of subgroups can be studied and compared across subgroups.
• Disability status is evaluated before accommodation.

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Examples of Appropriate Questions

• How difficult is it for you to walk a quarter of a mile- about 3 city blocks?
• Do you now use any special equipment or assistive devices to aid you in your usual activities?

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What is being Measured?

Disability as a demographic - Functional Limitations

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Next Steps

• Chose a purpose for Census questions
• Evaluate measures currently in use according to dimensions of the purpose
• Review results of methodological testing of general measures conducted in various countries
• Test one or two candidate general measures in several countries (particularly developing countries) and report results at the next meeting

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Meeting Products and More Information

• Full report of last two meetings posted on the Washington City Group website along with presentations / papers from the meetings
  • http://www.cdc.gov/nchs/citygroup.htm
  • http://www.un.org/depts/unsd/citygrp
• Prioritized list of issues to be addressed at future meetings
• Publication of key papers in a special issue of "Research in Social Science and Disability"

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Last Updated 12/11/2003. Contact: stat.unescap@un.org