SPECA Regional Workshop on Disability Statistics: Dec 13-15, 2006 Purposes of Disability Statistics Jennifer Madans and Barbara Altman National Center for Health Statistics, USA for the Washington Group on Disability Statistics

Disability statistics Purposes of disability measurement vary Purposes of disability measurement vary Therefore, it is important to know: Therefore, it is important to know: –Who needs this information? –Why do they need this information?

Who needs this information? –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)? –Planning –Evaluation –Marketing –Policy development and evaluation / Political action –Advocacy –Prevention –Enhance participation –Improve services –Standard rules

Primary purposes for disability statistics Needs assessment / service provision Needs assessment / service provision –Focus is on the individual who will be served by the program or product Trend monitoring Trend monitoring –Focus is to identify changes in prevalence rates of a particular indicator in the population that reflects policy concerns Equalization of opportunities 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 Benefit eligibility Benefit eligibility –Income support / social security –Subsidies Device manufacture Device manufacture Formal rehabilitation services Formal rehabilitation services –Education programs –Medical rehabilitation –Vocation rehabilitation Personal assistant services Personal assistant services Advocacy services Advocacy services

Needs assessment / service provision Seeks to identify those with specific needs, usually the most serious problems Seeks to identify those with specific needs, usually the most serious problems Requires detailed information about the person and the environment 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 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 Personal factors Source: ICF, WHO, 2001

Example 1: Needs assessment / service provision NGO wants to develop programs to assist children with developmental disabilities after school 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 NGO specialization will help identify the domains of activity or participation that are relevant 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 Government agency wants information on the population in need of income support 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 Ongoing estimation of population characteristics related to functioning Ongoing estimation of population characteristics related to functioning –Prevalence rates –Trends

Monitoring trends in functioning in the population Seeks to identify all those with limitations in activities as usually performed in a person’s environment 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 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 Personal factors Source: ICF, WHO, 2001

Example: Monitoring trend in functioning Information is used to characterize the barriers to inclusion of the population Information is used to characterize the barriers to inclusion of the population Measuring the interaction of people and environments Measuring the interaction of people and environments Population reporting limitation in transportation

Equalization of opportunities Seeks to identify those at risk of experiencing limitations in participation because of limitations in basic activities 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 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 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 Personal factors Source: ICF, WHO, 2001 Participation ?

Example: Equalization of opportunities Local community (or nation) institutes new transportation system 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 identify all those at greater risk than the general population for limitations in activity or participation Seeks to identify all those at greater risk than the general population for limitations in activity or participation Disability as a demographic Disability as a demographic % Using public transportation

The Definitional Paradox There is no single operational definition of disability (multiple sets of questions, linked to the different purposes of measurement, may be needed) 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 Different operational definitions lead to different estimates The question you are trying to answer (the purpose) will determine which definition to use 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 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 Need to understand the choices that are being made when time, expenses and respondent burden limit number of questions

The Disability Measurement Matrix Disability measurement is multidimensional like the phenomena itself Disability measurement is multidimensional like the phenomena itself Not every measure is appropriate for every purpose, nor is a single measure always sufficient 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 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 The Matrix is a tool to guide the choice of measures appropriate to the purpose of the data collection

Matrix Components Part A represents the purposes for measurement 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 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 C represents the characteristics or format of the questions

Part A: Purposes Needs assessment / service provision Needs assessment / service provision –Focus is on the individual who will be served by the program or product Trend monitoring Trend monitoring –Focus is to identify changes in prevalence rates of a particular indicator in the population that reflects policy concerns Equalization of opportunities 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 Conceptual components Conceptual components –Body functions and structures Sample domain: global mental functions Sample domain: global mental functions Example of element to be operationalized: consciousness Example of element to be operationalized: consciousness –Activities and participation Activities Activities –Sample domain: mobility –Example of element to be operationalized: walking Participation Participation –Sample domain: domestic live –Example of element to be operationalized: acquiring a place to live –Environmental factors Sample domain: products and technology Sample domain: products and technology Example of element to be operationalized: products and technology for communication Example of element to be operationalized: products and technology for communication

Part C: Question & survey characteristics Question characteristics Question characteristics –Duration of a circumstance –Response options –Need for a standard reference –Capacity or performance / presence of accommodations –Question language Survey characteristics Survey characteristics –Space limitations –Skip pattern –Screener –Mode

Application of matrix: Example 1 Purpose Purpose –Monitoring trend in use of public transportation system Conceptual components Conceptual components –Activity and participation Identify persons with limitations in community mobility Identify persons with limitations in community mobility Sample domains: mobility…moving around using transportation Sample domains: mobility…moving around using transportation Question characteristics Question characteristics –Dichotomous response –Performance: with use of adaptations at personal and system level

Application of matrix: Example 2 Purpose Purpose –Equal access to public transportation Conceptual components Conceptual components –Activity and participation Identify persons at risk of unequal access to transportation due to limitations in basic activities Identify persons at risk of unequal access to transportation due to limitations in basic activities Sample domains: walking, vision, hearing, communication, etc. Sample domains: walking, vision, hearing, communication, etc. Question characteristics Question characteristics –Scaled response –Without use of assistance or special equipment

Summary The purpose of disability measurement must be examined and understood The purpose of disability measurement must be examined and understood Once purpose is determined, relevant domains of measurement must be selected Once purpose is determined, relevant domains of measurement must be selected Elements of each domain must be operationalized Elements of each domain must be operationalized This will narrow the conceptualization of disability being used This will narrow the conceptualization of disability being used