WG3.11
Third Meeting
Washington Group on Disability Statistics (WG), 19 – 20 February 2004,
Comments on the ‘Proposed Purpose of an Internationally
Comparable General Disability Measure’
Alicia
Bercovich[*]
The World Programme of Action concerning Disabled Persons outlines major goals for policy formulation and program planning, at the International level. The common goal is to promote the participation of persons with disabilities in all aspects of life by preventing the onset and consequences of impairments, promoting optimal levels of functioning, and equalizing opportunities for participation.
Thus, the three major goals
defined in the Programme of Action are equalization of opportunities,
rehabilitation and prevention and in this line the authors discuss the Model to be used as a
theoretical frame to analyse and measure the population with disability.
The study analyzes the purposes that a general disability measure
should address and provide a rationale for the choice based on relevance across
countries with respect to policy and feasibility of implementation with special
attention to international comparability of data. The result is the decision
upon the selected purposes for the general disability measure which the Washington
Group (WG) must develop.
It is consensual the utilization of the International Classification of Functioning and Disability (ICF) as a framework for the implementation of the measures.
It also was discussed that the possible purposes of the harmonized mensuration, to be meaningful at the International level could be:
1) To provide services, including the
development of programs and polices for service provision and the evaluation of
these programs and services,
The provision of services at the population level includes, but is not limited to, addressing needs for housing, transportation, assistive technology, vocational or educational rehabilitation, and long-term care.
2) To monitor the level of functioning in the population,
Monitoring
levels 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 in a society.
3) To assess equalization of opportunities.
The assessment of equalization of opportunities involves monitoring and evaluating the effect of anti-discrimination laws and policies, and programs designed to improve and equalize the participation of persons with impairments in all aspects of life.
In the paper, each of the three
major purposes for measurement at the population level was evaluated for their international relevance and feasibility of implementation.
The important condition consensual for the WG was the need for a clear link between the purpose of measurement and the operationalization of the indicator.
Evaluation of purposes
The group analyzed the three purposes and concluded that the first two purposes satisfied the criteria for relevance but did not meet the criteria for feasibility of implementation in a way to permit the use of a small set of questions and to assure international comparability.
In the equalization of opportunity approach it is important to measure the impairment separately from the organized activity as a component of participation. This separation allows differentiating the purpose of monitoring functioning in the population and the purpose of assessing equalization of opportunity.
The authors show
that the purpose of assessing equalization of opportunities meets the criteria
for relevance and feasibility of
implementation using a small set of questions that allow the possibility to
achieve internationally comparable results.
The authors
propose the assessment of equalization of opportunity as the purpose for the
first general disability measure to be developed by the WG.
Benefits
Benefits of choosing this purpose include identification of a broad subpopulation, which can be further described using detailed information obtained via extended survey sets.
A small set of questions can be
standardized and proposed to the countries, considering for the implementation,
the particularities of each country.
Limitations
The general disability measure developed to suit the proposed purpose may not suit other purposes. It also does not provide a comprehensive assessment of disability or identify the “true” disabled population.
This approach is also lacking in information about the possible mechanisms that facilitate or impede participation. Some elements of those mechanisms could be included in extended survey sets, such as use of assistive devices and access to personal assistance.
In
Transition to Measurement
The authors evaluate that:
The ICF model and classification scheme as it is
currently constructed provides component concepts of the model, general
definitions of those components as well the universe of domains that make up
those components.
It also provides operationalization
categories or what can be interpreted as empirical representations associated with
the domains for all the components of body function and structure, activity and
participation and environmental factors.
The ICF does not indicate the measurement questions
or other possible methods of evaluation of the empirical representations,
It doesn’t
provide a way to combine the measures to
create a scale or index that can be
used in analysis as a representation of the combined empirical elements used to
reflect the particular domain.
Measuring
Impairment
A complete measurement of impairment as it is defined
in the ICF, is not possible to be achieved. Even if it were, the restriction in
the number of questions would allow the inclusion of only a minimum set.
The first task is to define what elements of body
function and structure are most relevant to the relationship between the person
and the environment so that they can contribute to the experience of disability.
Measuring
Activity and Participation
There are large sets of questions and different approaches
that reflect the components of activity and participation.
The authors show that there are at least three
levels of measurement to address the experience of the individual with disability
that are elaborated in the ICF.
The activities can be conceptualized as measuring
basic willful actions, or the ability to perform specific tasks. In the
second case the individual is motivated to combine physical movement,
intellectual activity, and use of assistive devices in an organized process in
order to reach a specific goal.
Finally,
the individual would be involved in an organized activity. This is a more
complex level of measurement from the Activity domain of the ICF and would
represent the ongoing willful action and specific task completion necessary to perform
activities which involve interaction with other people at some level of negotiation.
The Brazilian Experience
The
Brazilian Population Census 2000 introduced five questions to measure
disability in a broad concept. We also introduced the assessment of the level
of severity of the impairment. The results were encouraging, in the sense that
we think that we are able to implement measures recommended by the WG. The
cross tabulations of socioeconomic and educational characteristics with
demographic characteristics and impairments were meaningful, and the idea of
harmonizing the questions seems feasible, specially after the success of the Mercosur plus
General Comments
The conclusion of the paper is absolutely compatible with the trend of the argumentation presented at the WG Meetings, and also with the experiences of the countries which are more and more interested on the theme. The necessity of harmonized data between countries is a mayor goal of the Statistical Community, not only for disability, but for other important variables, as socio-economic characteristics, level of education, etc.
The big task is the transition to
Measurement, and the possibility to arrive to a “true” compatible system.
Comments on the Implementation of the
Measure
It
is absolutely consensual the necessity for Harmonization of concepts and procedures to have meaningful and
comparable measures.
But it is also clear that, even having found a
purpose and an implementation simple and adequate, cultural differences between
countries will continue to affect comparability. This is part of the challenge,
and show the necessity of continuous work.
Some of the discussions maintained show us the need
to have the Census and Surveys teams understanding the purpose of the measure.
In this sense, we can think in a campaign addressed to the Statistical
Agencies, and also to have the possibility of training people of the technical
and operational teams, not only on the rationale and purpose of the measure,
but also on the practical ways of implementing and evaluating the process and
the results.
In this sense, it is important to agree on a minimum
concrete set of questions recommended to insert in Censuses and Surveys. It is
clear that the final form of the questions must be operationalized
by the countries according to local characteristics.
The experience with the Mercosur
Common Census has shown us how important is accompanying all the phases of the
operation, being it a Census or a Survey.
We also consider important encouraging to perform the
Pilot tests in a harmonized way, and to help in the way to analyze the results.
The Documentation on the results of the tests is
very important: it can help other countries with similar characteristics not to
loose time testing in a way that didn’t work well for the neighbor.
Another important task that should be harmonized is
the Editing and Imputation of the new variables. On this subject we don’t know
if it is possible to achieve consensus, but at least it should exist
recommendations on best practices on the subject.
It is also recommended a kind of “harmonization” of
the evaluation of the data. The idea is to provide standardization of a minimal
set of checks to be performed at the country level, and also to discuss the
special conditions of the country which lead to different results.
Considering the data together with statistical
measures on the precision of the results is always important to establish
comparisons.
Once again the experience with Mercosur
project showed us how the harmonization work conducts to the optimization of
the Methodological, Human and Technological Resources of the countries for
execution of the Census or Survey.
Finally, it is important to keep documentation on
the limitations on comparability due to cultural and contextual factors for
each one of the participating countries.
[*] Coordinator, 2000 Census Committee,
Instituto Brasileiro de Geografia e Estatística