Proposed Purpose of an Internationally Comparable General Disability Measure Jennifer H. Madans, Barbara M. Altman, Elizabeth K. Rasch – NCHS Malin Synneborn,

Proposed Purpose of an Internationally Comparable General Disability Measure

Jennifer H. Madans, Barbara M. Altman, Elizabeth K. Rasch – NCHS

Malin Synneborn, Jerry Banda & Margaret Mbogoni – UNAngela Me – UNECE & Elena DePalma - ISTAT

Wasington Group, Brussels, Belgium

Background

Washington Group 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


Next Steps Developed in Washington

Complete a matrix matching the purpose of measurement with question characteristics.

Evaluate measures currently in use.


Matrix as Map to Intersection of Purpose and Measurement 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 The Disability Measurement Matrix was to develop a tool to guide the choice of measures appropriate to the purpose of the data collection


Ottawa Meeting: Introduction of Matrix Matrix Objectives:

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


Purpose of This Presentation

Major objective is to identify the primary purpose for asking general census questions on disability in the international context.

Discuss implementation of that purpose through measurement.


Source of Concepts for Measurement: ICF Model

Health Condition

(disorder or disease)

Body Functions & Structure Activity Participation

Environmental Factors

Personal Factors

Source: ICIDH-2, 1999


Defining a Purpose for Census Measurement of Disability Since “Disability” is multidimensional we can

not know the single “true” disabled population.

Matrix defines 3 broad purposes about which a society may be concerned when measuring “disability.”

Those purposes are related to different dimensions of “disability” or different conceptual components of the model.


Three Major Classes of Purposes at Aggregate Level 1. To provide services, including the

development of programs and policies for service provision and the evaluation of these programs and services

2. To monitor the level of functioning (umbrella term) in the population.

3. To assess equalization of opportunities.


Purpose Dictates Type of Question

Service Provision – seeks to identify those with specific needs, usually for the most serious problems.

Monitoring Populations – seeks to identify all those with activity or participation limitation.

Equalization of Opportunity – seeks to identify all those ‘at greater risk’ than the general population of activity or participation limitation without accommodation.


Purpose 1: Providing Services

Provision of services at the population level includes, but is not limited to, transportation, rehabilitation, providing assistive devices, long term care.

Requires detailed information about the person and the environment, as in the case of rehabilitation.

Types of questions would include: Need for help of various kinds Environmental factors such as safety issues,

problems with access.


Purpose 2: Monitoring Level of Functioning in the Population Monitoring level of functioning includes

estimating rates and analyzing trends. The level of functioning in the population is considered a primary health and social indicator which characterizes the status of the population.

Types of questions to include: Participation in common activities such as

work, family and church.


Monitoring Disability Prevalence:Population Reporting Work Limitation

0

5

10

15

20

25

Pro

po

rtio

n w

ith

d

isa

bil

ity

(%

)

2005 2010 2015 2020 2025 2030


Purpose 3: Assessing Equalization of Opportunity In order to address this purpose we need to

start by identifying persons who are at greater risk than the general population of experiencing restrictions in performing specific tasks or participating in social activities.

Type of questions that identify this group include: Identification of difficulties in basic functioning

such as walking, seeing, hearing.


Disability as a Demographic :Population with Limitations in Functioning

83

35

0

15

30

45

60

75

90

Pro

po

rtio

n (

%)

Nondisabled Disabled

Employed


Criteria for Selection of a Purpose for Census Measurement of Disability Relevance - Is the purpose of relatively equal

importance across countries with respect to policy?

Feasibility – Is it possible to collect the proposed information using a comparable general disability measure that includes a small set (1-4) of census-like questions?


Applying Criteria to Purpose 1

Relevance: Service provision is an essential activity of governments

and service organization –relevance to all cultures is unquestionable.

Feasibility: Level of detail of data necessary is not workable in a

Census format. Nature of service provision and types of service are

highly variant across cultures.



Relevance: Monitoring the health trends in a society are

useful to all societies for tracking changes in health problems and successes or failures of public health programs.

Feasibility: In an international context, response

comparability can be a problem, particularly related to participation measures which are culturally and environmentally determined.



Relevance: Equalization of opportunity is an ultimate goal

of all countries, was endorsed at earlier WG meetings and is an objective of the UN.

Feasibility: If we conceive of disability toward the most

basic elements of activity, without tying it to participation, we can limit the number and types of questions necessary thus enhancing feasibility.


Recommendation

The best approach to developing internationally comparable census questions is an Equalization of Opportunity approach. Identifies a broad subpopulation which can be

further examined via extended survey sets Provides more versatility. Provides ability to partially fulfill another

purpose (2), i.e. monitor limitations in functioning

Can be used as a demographic.


Disability as a demographic

Equalization of opportunity

WD / D = WÐ / Ð

Monitoring functioning in the population

D – WD / Total population ≈

proportion of population reporting work disability


Purpose of Measurement

In order to elaborate on the recommended purpose we will discuss: The relationship of measurement to our

broader conceptual schemes. Terminology. The measurement appropriate to the purpose

of Equalization of Opportunity.


Concepts, Terminology and Measurement

Using the ICF as the conceptual model underlying our work, gives us a common point of reference and a common vocabulary.

Since the ICF does not provide measurement questions or a way to measure the concepts, we also need to provide a model and language for measurement.


Methodological Components as Defined by the ICF

C la ss if ica tionS ca le /Ind ex

M e a su re m e ntQ u es tio n /O bse rva tion

O p e ra tio n a l D e fin it ion

D e fin it ion

C o nce ptu a l C om po n en t 1

D IS A B IL ITYC o n ce p tua l Le ve l

ICF Model

One Concept of ICF with its definition

Concept interpreted into classification components

Undefined in ICF

Undefined in ICF

The Path from Concept to Data: The Role of Measurement


Transitioning from Concept to Measurement Our job is to figure out how to move from the

conceptual model to the data we want and need and how to do that through measurement.

The ICF model has provided us with the conceptualizations of body structure and function, activity, participation and environment as the main elements associated with disability.

The detailed classification scheme provides the operational definitions of these concepts.

The missing pieces include decisions on the relevant conceptual component and the measurement instrument.


ICF Components of Activity and Participation Most of the types of measurements that are

commonly used in surveys now fall into the ICF conceptual component of activities and participation.

The operationalization of these concepts based on the classification scheme is very detailed.

The classes involve measurement at a minimum of three or four levels of observation.

These levels of observation or measurement provide a range from the most simple individual activity to the more complex participation in a culturally defined social structure.


Moving From Activity to Participation: Levels of Measurement First Level: Individual willful action – whether

or not the individual’s body system or organs work, it requires willful action to walk, read, listen, etc.

Given the capacity for willful action the remaining levels of measurement increase in complexity and are dictated by the social/cultural structure of the society. They include specific task actions; organized activity and role participation.


Forms of Measurement

Level 1 Level 2 Level 4 Level 4

Willful ActionQuestions

MobilitySeeing/Hearing

LearningSpeaking

Specific TaskQuestions

BathingDressing

Taking MedicationsDoing laundry

Individual Organized Activity

Questions

Going out to dinnerDriving a car

Visiting with friendsVoting

Role ParticipationQuestions

WorkingHaving a job

Being a parent

Church MemberFemale

Levels of Measurement to Capture Activity and Participation


Focus on Level 1

Recommendation of Equalization of Opportunity Purpose located the definition of “disability” at the most basic level of activity/participation.

Measurement of the most basic level of activity/participation is associated with the ability or inability to take willful action, that is to carry out basic bodily operations at the level of the whole person.


Willful Action Measures

Refer to an individuals movement or use of bodily parts in a deliberate, intentional manner to accomplish a physical or intellectual objective such as threading a needle, listening to conversation, picking something off the floor.

Common survey questions that satisfy this level of measurement include questions about climbing steps, lifting packages, seeing a friend across the room.


Possible Question Types

Based on the purpose and the level of measurement we have recommended, the types of questions that could be used in a census would include: Questions that measure various functioning

domains, mobility, cognition, sensory, etc. A qualifier for such questions would need to

ascertain that the willful action was accomplished without assistance, human or mechanical.


Possible Question Choices

Mobility:WalkingClimbing stairsBending or stoopingReaching or liftingUsing Hands

SensorySeeingHearing

Emotional functioningBasic interpersonal interactionPsychological well-being

CommunicatingUnderstandingSpeaking

Cognitive FunctionsLearningRememberingMaking decisionsConcentrating


Limitations of the Census Format

Limited space of Census questionnaire forces hard choices.

Checked domains reflect types of questions that would identify largest population and those which would be the most culturally compatible.

Using these domains would allow some flexibility for additional culturally relevant questions for the specific country


Conclusion – Recommendations Restated Focusing on an Equalization of Opportunity

Purpose allows us to develop a demographic approach to understanding disability.

The connection between disability and participation can then be made during data analysis and allows for comparison between persons with and without disability.

Monitoring the effectiveness of programs and policies to promote full participation can be monitored easily and more accurately.

Documents

Proposed Purpose of an Internationally Comparable General Disability Measure Jennifer H. Madans, Barbara M. Altman, Elizabeth K. Rasch – NCHS Malin Synneborn,