Transcript Purposes of Disability Statistics Jennifer Madans and Barbara Altman National Center for Health Statistics, USA for the Washington Group on Disability Statistics SPECA Regional Workshop.

Purposes of Disability
Statistics
Jennifer Madans and Barbara Altman
National Center for Health Statistics, USA
for the Washington Group on Disability Statistics
SPECA Regional Workshop on Disability
Statistics: Dec 13-15, 2006
Disability statistics
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Purposes of disability measurement
vary
Therefore, it is important to know:
– Who needs this information?
– Why do they need this information?
Who needs this
information?
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Researchers
Stakeholders
Data users
Public / citizens
Policy makers
Associations (NGOs)
Trade unions
Government agencies
International
organizations
– Health service
organizations / providers
– Industry
 Device / equipment
manufacturers
 Employers
– Consumer groups
– Insurance agencies
– Education planners
– Media
Why do they need this
information (purposes)?
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Planning
Evaluation
Marketing
Policy development and evaluation / Political
action
Advocacy
Prevention
Enhance participation
Improve services
Standard rules
Primary purposes for
disability statistics
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Needs assessment / service provision
– Focus is on the individual who will be served by
the program or product
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Trend monitoring
– Focus is to identify changes in prevalence rates
of a particular indicator in the population that
reflects policy concerns
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Equalization of opportunities
– Focus is on the population that will benefit from
improved access through civil rights legislation
and development of programs and policies
Needs assessment /
service provision
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Benefit eligibility
– Income support / social security
– Subsidies
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Device manufacture
Formal rehabilitation services
– Education programs
– Medical rehabilitation
– Vocation rehabilitation
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Personal assistant services
Advocacy services
Needs assessment /
service provision
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Seeks to identify those with specific needs,
usually the most serious problems
Requires detailed information about the
person and the environment
Influenced by the organization and structure
of service organizations and support
programs within a particular culture
Locating population for service
provision in the ICF model
Health Condition
Participation
Environmental
factors
Source: ICF, WHO, 2001
Personal
factors
Example 1: Needs assessment
/ service provision

NGO wants to develop programs to assist
children with developmental disabilities after
school
– Focus is a select population; samples can probably
be drawn from administrative data
– In-depth information about children’s activity and
participation limitations will provide information
around which a program can be organized
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NGO specialization will help identify the domains of
activity or participation that are relevant
– Data may be specific to the cultural and geographic
area where information is collected (not necessarily
nationally representative)
Example 2: Needs assessment
/ service provision
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Government agency wants information
on the population in need of income
support
– Generally obtained from administrative
data but limited to those who apply
– Can obtain from population based
methods but questions need to replicate
eligibility requirements
Trend monitoring
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Ongoing estimation of population
characteristics related to functioning
– Prevalence rates
– Trends
Monitoring trends in
functioning in the population
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Seeks to identify all those with
limitations in activities as usually
performed in a person’s environment
Dependent on individual and
environmental characteristics with
whatever adaptations that have been
made
Locating population for trend
monitoring in the ICF model
Health Condition
Body Structure
& Function
Environmental
factors
Source: ICF, WHO, 2001
Personal
factors
Example: Monitoring
trend in functioning
Population reporting limitation in
• Information is
• Measuring the
interaction of
people and
environments
transportation
25
Proportion (%)
used to
characterize the
barriers to
inclusion of the
population
20
15
10
5
0
2005
2010
2015
2020
2025
Equalization of
opportunities
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Seeks to identify those at risk of
experiencing limitations in participation
because of limitations in basic activities
Requires measurement of the level of
functioning of the whole person
regardless of the health problem or
condition that creates the limitations
Measurement is done trying to hold the
environment neutral
Locating population at risk for
inequality of opportunities in the
ICF model
Health Condition
Body Structure
& Function
Environmental
factors
Source: ICF, WHO, 2001
?
Participation
Personal
factors
Example: Equalization of
opportunities
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Local community (or nation) institutes new transportation
system
– Need to determine if system used by persons with
functional limitations as well as general public
– Survey used to identify use of / satisfaction with system
– Along with identification of gender and age of
respondent, those at risk of participation limitations (i.e.
those with limitations in basic activities) are also
identified
– System use and satisfaction can be compared between
those who are and are not at risk of participation
limitations
– Equalization results when the patterns are the same /
similar
Example: Equalization of
opportunities
• Seeks to
% Using public transportation
•
90
Proportion (%)
identify all
those at
greater risk
than the
general
population for
limitations in
activity or
participation
Disability as a
demographic
60
30
0
Nondisabled
Disabled
The Definitional Paradox
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There is no single operational definition of disability
(multiple sets of questions, linked to the different
purposes of measurement, may be needed)
Different operational definitions lead to different
estimates
The question you are trying to answer (the
purpose) will determine which definition to use
Need to understand the choices that are being
made when a purpose and a definition are chosen
Need to understand the choices that are being
made when time, expenses and respondent burden
limit number of questions
The Disability
Measurement Matrix
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Disability measurement is multidimensional
like the phenomena itself
Not every measure is appropriate for every
purpose, nor is a single measure always
sufficient
The Disability Measurement Matrix links
purpose with measurement (question
characteristics)
The Matrix is a tool to guide the choice of
measures appropriate to the purpose of the
data collection
Matrix Components
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Part A represents the purposes for
measurement
Part B represents the substantive
aspects of the questions (domain) that
enhance the understanding of the
concept of disability
Part C represents the characteristics or
format of the questions
Part A: Purposes
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Needs assessment / service provision
– Focus is on the individual who will be served by
the program or product
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Trend monitoring
– Focus is to identify changes in prevalence rates of
a particular indicator in the population that
reflects policy concerns
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Equalization of opportunities
– Focus is on the population that are at risk for
participation limitations and will benefit from civil
rights legislation and programs
Part B: Conceptual
components
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Conceptual components
– Body functions and structures
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Sample domain: global mental functions
Example of element to be operationalized: consciousness
– Activities and participation
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Activities
– Sample domain: mobility
– Example of element to be operationalized: walking
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Participation
– Sample domain: domestic live
– Example of element to be operationalized: acquiring a place to live
– Environmental factors
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Sample domain: products and technology
Example of element to be operationalized: products and
technology for communication
Part C: Question & survey
characteristics
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Question characteristics
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Duration of a circumstance
Response options
Need for a standard reference
Capacity or performance / presence of
accommodations
– Question language
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Survey characteristics
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Space limitations
Skip pattern
Screener
Mode
Application of matrix:
Example 1
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Purpose
– Monitoring trend in use of public transportation
system
Conceptual components
– Activity and participation
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Identify persons with limitations in community mobility
Sample domains: mobility…moving around using
transportation
Question characteristics
– Dichotomous response
– Performance: with use of adaptations at personal
and system level
Application of matrix:
Example 2
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Purpose
– Equal access to public transportation
Conceptual components
– Activity and participation
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Identify persons at risk of unequal access to
transportation due to limitations in basic activities
Sample domains: walking, vision, hearing,
communication, etc.
Question characteristics
– Scaled response
– Without use of assistance or special equipment
Summary
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The purpose of disability measurement must
be examined and understood
Once purpose is determined, relevant
domains of measurement must be selected
Elements of each domain must be
operationalized
This will narrow the conceptualization of
disability being used