SPECA Regional Workshop on Disability StSPECA Regional Workshop on Disability Statistics: Dec 13-15, 2006atistics: Dec 13-15, 2006

Purposes of Disability Purposes of Disability StatisticsStatistics

Jennifer Madans and Barbara Altman Jennifer Madans and Barbara Altman

National Center for Health Statistics, USANational Center for Health Statistics, USA

for the Washington Group on Disability for the Washington Group on Disability StatisticsStatistics

Disability statisticsDisability statistics

Purposes of disability Purposes of disability measurement vary measurement vary

Therefore, it is important to know: Therefore, it is important to know: – Who needs this information?Who needs this information?– Why do they need this information?Why do they need this information?

Who needs this Who needs this information?information?– ResearchersResearchers– StakeholdersStakeholders– Data usersData users– Public / citizensPublic / citizens– Policy makersPolicy makers– Associations (NGOs)Associations (NGOs)– Trade unionsTrade unions– Government agenciesGovernment agencies– International International

organizationsorganizations

– Health service Health service organizations / organizations / providersproviders

– IndustryIndustry Device / equipment Device / equipment

manufacturersmanufacturers EmployersEmployers

– Consumer groupsConsumer groups– Insurance agenciesInsurance agencies– Education plannersEducation planners– MediaMedia

Why do they need this Why do they need this information information (purposes)?(purposes)?

– PlanningPlanning– EvaluationEvaluation– MarketingMarketing– Policy development and evaluation / Policy development and evaluation /

Political actionPolitical action– AdvocacyAdvocacy– PreventionPrevention– Enhance participationEnhance participation– Improve servicesImprove services– Standard rulesStandard rules

Primary purposes for Primary purposes for disability statisticsdisability statistics Needs assessment / service provisionNeeds assessment / service provision

– Focus is on the individual who will be Focus is on the individual who will be served by the program or productserved by the program or product

Trend monitoringTrend monitoring– Focus is to identify changes in prevalence Focus is to identify changes in prevalence

rates of a particular indicator in the rates of a particular indicator in the population that reflects policy concernspopulation that reflects policy concerns

Equalization of opportunitiesEqualization of opportunities– Focus is on the population that will benefit Focus is on the population that will benefit

from improved access through civil rights from improved access through civil rights legislation and development of programs legislation and development of programs and policies and policies

Needs assessment / Needs assessment / service provisionservice provision Benefit eligibilityBenefit eligibility

– Income support / social securityIncome support / social security– SubsidiesSubsidies

Device manufactureDevice manufacture Formal rehabilitation servicesFormal rehabilitation services

– Education programsEducation programs– Medical rehabilitationMedical rehabilitation– Vocation rehabilitationVocation rehabilitation

Personal assistant servicesPersonal assistant services Advocacy servicesAdvocacy services

Needs assessment / Needs assessment / service provisionservice provision

Seeks to identify those with specific Seeks to identify those with specific needs, usually the most serious needs, usually the most serious problemsproblems

Requires detailed information about Requires detailed information about the person and the environmentthe person and the environment

Influenced by the organization and Influenced by the organization and structure of service organizations and structure of service organizations and support programs within a particular support programs within a particular cultureculture

Locating population for Locating population for service provision in the ICF service provision in the ICF modelmodel

Health Condition

Participation

Environmental factors

Personal factors

Source: ICF, WHO, 2001

Example 1: Needs Example 1: Needs assessment / service assessment / service provisionprovision NGO wants to develop programs to assist NGO wants to develop programs to assist

children with developmental disabilities children with developmental disabilities after schoolafter school– Focus is a select population; samples can Focus is a select population; samples can

probably be drawn from administrative dataprobably be drawn from administrative data– In-depth information about children’s activity In-depth information about children’s activity

and participation limitations will provide and participation limitations will provide information around which a program can be information around which a program can be organizedorganized

NGO specialization will help identify the domains of NGO specialization will help identify the domains of activity or participation that are relevantactivity or participation that are relevant

– Data may be specific to the cultural and Data may be specific to the cultural and geographic area where information is collected geographic area where information is collected (not necessarily nationally representative)(not necessarily nationally representative)

Example 2: Needs Example 2: Needs assessment / service assessment / service provisionprovision Government agency wants Government agency wants

information on the population in information on the population in need of income supportneed of income support– Generally obtained from Generally obtained from

administrative data but limited to administrative data but limited to those who applythose who apply

– Can obtain from population based Can obtain from population based methods but questions need to methods but questions need to replicate eligibility requirementsreplicate eligibility requirements

Trend monitoringTrend monitoring

Ongoing estimation of population Ongoing estimation of population characteristics related to characteristics related to functioningfunctioning– Prevalence ratesPrevalence rates– TrendsTrends

Monitoring trends in Monitoring trends in functioning in the functioning in the populationpopulation Seeks to identify all those with Seeks to identify all those with

limitations in activities as usually limitations in activities as usually performed in a person’s performed in a person’s environmentenvironment

Dependent on individual and Dependent on individual and environmental characteristics with environmental characteristics with whatever adaptations that have whatever adaptations that have been madebeen made

Locating population for trend Locating population for trend monitoring in the ICF modelmonitoring in the ICF model

Health Condition

Body Structure & Function

Environmental factors

Personal factors

Source: ICF, WHO, 2001

Example: Monitoring Example: Monitoring trend in functioningtrend in functioning

• Information is Information is used to used to characterize characterize the barriers to the barriers to inclusion of inclusion of the the populationpopulation

•Measuring the Measuring the interaction of interaction of people and people and environments environments

0

5

10

15

20

25

Pro

port

ion (

%)

2005 2010 2015 2020 2025

Population reporting limitation in transportation

Equalization of Equalization of opportunitiesopportunities Seeks to identify those at risk of Seeks to identify those at risk of

experiencing limitations in experiencing limitations in participation because of limitations participation because of limitations in basic activitiesin basic activities

Requires measurement of the level Requires measurement of the level of functioning of the whole person of functioning of the whole person regardless of the health problem or regardless of the health problem or condition that creates the limitationscondition that creates the limitations

Measurement is done trying to hold Measurement is done trying to hold the environment neutral the environment neutral

Locating population at risk Locating population at risk for inequality of for inequality of opportunities in the ICF opportunities in the ICF modelmodel

Health Condition

Body Structure & Function

Environmental factors

Personal factors

Source: ICF, WHO, 2001

Participation?

Example: Equalization Example: Equalization of opportunitiesof opportunities Local community (or nation) institutes new Local community (or nation) institutes new

transportation systemtransportation system– Need to determine if system used by persons with Need to determine if system used by persons with

functional limitations as well as general publicfunctional limitations as well as general public– Survey used to identify use of / satisfaction with Survey used to identify use of / satisfaction with

systemsystem– Along with identification of gender and age of Along with identification of gender and age of

respondent, those at risk of participation limitations respondent, those at risk of participation limitations (i.e. those with limitations in basic activities) are (i.e. those with limitations in basic activities) are also identifiedalso identified

– System use and satisfaction can be compared System use and satisfaction can be compared between those who are and are not at risk of between those who are and are not at risk of participation limitationsparticipation limitations

– Equalization results when the patterns are the same Equalization results when the patterns are the same / similar/ similar

Example: Equalization Example: Equalization of opportunitiesof opportunities

• Seeks to Seeks to identify all identify all those at those at greater risk greater risk than the than the general general population for population for limitations in limitations in activity or activity or participationparticipation

• Disability as a Disability as a demographicdemographic

0

30

60

90

Pro

port

ion (

%)

Nondisabled Disabled

% Using public transportation

The Definitional The Definitional ParadoxParadox

There is no single There is no single operationaloperational definition of definition of disability (multiple sets of questions, linked to the disability (multiple sets of questions, linked to the different purposes of measurement, may be different purposes of measurement, may be needed)needed)

Different operational definitions lead to different Different operational definitions lead to different estimatesestimates

The question you are trying to answer (The question you are trying to answer (the the purposepurpose) will determine which definition to use ) will determine which definition to use

Need to Need to understand the choicesunderstand the choices that are being that are being made when a purpose and a definition are chosenmade when a purpose and a definition are chosen

Need to Need to understand the choicesunderstand the choices that are being that are being made when time, expenses and respondent made when time, expenses and respondent burden limit number of questionsburden limit number of questions

The Disability The Disability Measurement MatrixMeasurement Matrix Disability measurement is Disability measurement is

multidimensional like the phenomena multidimensional like the phenomena itselfitself

Not every measure is appropriate for Not every measure is appropriate for every purpose, nor is a single measure every purpose, nor is a single measure always sufficientalways sufficient

The DisabilityThe Disability Measurement MatrixMeasurement Matrix links links purpose with measurement (question purpose with measurement (question characteristics)characteristics)

The MatrixThe Matrix is a tool to guide the choice is a tool to guide the choice of measures appropriate to the purpose of measures appropriate to the purpose of the data collectionof the data collection

Matrix ComponentsMatrix Components

Part APart A represents the purposes for represents the purposes for measurementmeasurement

Part BPart B represents the substantive represents the substantive aspects of the questions (domain) aspects of the questions (domain) that enhance the understanding of that enhance the understanding of the concept of disabilitythe concept of disability

Part CPart C represents the represents the characteristics or format of the characteristics or format of the questionsquestions

Part A: PurposesPart A: Purposes

Needs assessment / service provisionNeeds assessment / service provision– Focus is on the individual who will be Focus is on the individual who will be

served by the program or productserved by the program or product Trend monitoringTrend monitoring

– Focus is to identify changes in prevalence Focus is to identify changes in prevalence rates of a particular indicator in the rates of a particular indicator in the population that reflects policy concernspopulation that reflects policy concerns

Equalization of opportunitiesEqualization of opportunities– Focus is on the population that are at risk Focus is on the population that are at risk

for participation limitations and will benefit for participation limitations and will benefit from civil rights legislation and programsfrom civil rights legislation and programs

Part B: Conceptual Part B: Conceptual componentscomponents Conceptual componentsConceptual components

– Body functions and structuresBody functions and structures Sample domain: global mental functionsSample domain: global mental functions Example of element to be operationalized: consciousnessExample of element to be operationalized: consciousness

– Activities and participationActivities and participation ActivitiesActivities

– Sample domain: mobilitySample domain: mobility– Example of element to be operationalized: walkingExample of element to be operationalized: walking

ParticipationParticipation– Sample domain: domestic liveSample domain: domestic live– Example of element to be operationalized: acquiring a place Example of element to be operationalized: acquiring a place

to liveto live

– Environmental factorsEnvironmental factors Sample domain: products and technologySample domain: products and technology Example of element to be operationalized: products and Example of element to be operationalized: products and

technology for communicationtechnology for communication

Part C: Question & Part C: Question & survey characteristicssurvey characteristics Question characteristicsQuestion characteristics

– Duration of a circumstanceDuration of a circumstance– Response optionsResponse options– Need for a standard referenceNeed for a standard reference– Capacity or performance / presence of Capacity or performance / presence of

accommodationsaccommodations– Question languageQuestion language

Survey characteristicsSurvey characteristics– Space limitationsSpace limitations– Skip patternSkip pattern– ScreenerScreener– ModeMode

Application of matrix: Application of matrix: Example 1Example 1 PurposePurpose

– Monitoring trend in use of public Monitoring trend in use of public transportation systemtransportation system

Conceptual componentsConceptual components– Activity and participationActivity and participation

Identify persons with limitations in community Identify persons with limitations in community mobilitymobility

Sample domains: mobility…moving around using Sample domains: mobility…moving around using transportationtransportation

Question characteristicsQuestion characteristics– Dichotomous responseDichotomous response– Performance: with use of adaptations at Performance: with use of adaptations at

personal and system levelpersonal and system level

Application of matrix: Application of matrix: Example 2Example 2 PurposePurpose

– Equal access to public transportationEqual access to public transportation Conceptual componentsConceptual components

– Activity and participationActivity and participation Identify persons at risk of unequal access to Identify persons at risk of unequal access to

transportation due to limitations in basic activitiestransportation due to limitations in basic activities Sample domains: walking, vision, hearing, Sample domains: walking, vision, hearing,

communication, etc.communication, etc. Question characteristicsQuestion characteristics

– Scaled responseScaled response– Without use of assistance or special Without use of assistance or special

equipmentequipment

SummarySummary

The purpose of disability measurement The purpose of disability measurement must be examined and understoodmust be examined and understood

Once purpose is determined, relevant Once purpose is determined, relevant domains of measurement must be domains of measurement must be selectedselected

Elements of each domain must be Elements of each domain must be operationalizedoperationalized

This will narrow the conceptualization This will narrow the conceptualization of disability being usedof disability being used