COMMENTS ON THE PROPOSED PURPOSE
OF A GENERAL DISABILITY MEASURE
By GENARA RIVERA[1]
In developing countries as Perú, on
the topic of people with disabilities, the most important question that we have
to solve is What is the number of persons in the population with disabilities that
there is in the country?
Our last census shows a small
number (1,3 percent of the total population) and most of the organizations for
disabled people think that this number is far away from the “real number”.
Other statistical research made by the National Institute of Rehabilitation
shows three different figures on the topics of Deficiency (45%), Disability
(31%), and Handicaps (13%).
When some official institution or
Non Governmental Organization wants to make a proposal or any project for
people with disabilities, they really don’t know what figure best suits their purpose.
In this context, the WG “Proposed
Purpose of an Internationally Comparability General Disability Measure” would
be useful for improving the way that National Institutions of Statistics
measure this subpopulation.
Identification of Purposes
As the WG paper says, first of all
we have to understand that is not possible to measure the “real (or true)”
population with disabilities, indeed we can get at least a “proxy”, very useful
for practical purposes. If we are clear in the definition of the purpose of
measurement and in the operationalization of it, we can get a measure suitable
for the objectives of given authorities, policy makers and other users, an important
tool for their work.
The WG suggests the use of the
International Classification of Functioning and Disability (ICF) to help in the
measurement and the idea is good. However at this point is important to notice
that in developing countries the ICF has not been used enough, which means that
it might not be easy for all countries to understand how to use it.
In the paragraph related to the
identification of purposes it is explained how the World Programme of Action
concerning Disabled Persons (United Nations, New York, 1983) and the work developed by the WG coincide on the criteria that
the selected purpose should meet. These are Relevance and Feasibility, the
first one refers to the purpose of the measure and its importance on
determining the future actions of policy related to people with disabilities.
The second one is concentrating on the set of questions that countries will use
to collect data.
We must not forget that for
developing countries the census is the only way to collect data on disability
matters, so National Statistical Offices have to be very careful with the
questions they use. For example in Perú, in the last two censuses it was
allowed to introduce only one question and in cases like this it became more
difficult to choose the best one.
The UNSD and the WG are in a good position
to recommend a suitable set of questions that can meet the two criteria that
satisfied both purposes: attend countries needs of a general measure and allows
international comparability, since they have examined the questions used in
developing and developed countries.
The Position Paper chose the Assessment
of equalization of opportunity as the purpose for a general
measure. This approach separates the measurement of impairment from participation
limitation by focusing on the measurement of impairment and we agreed with the
explanations given to understand the arguments. Although, we think that the
main problem is how to operationalize this concept into a questionnaire (through
a set of questions) that allow us to be closer to the true subpopulation we are
trying to measure.
About
the transition to Measurement appendix: Conceptualization, Operationalization
and Measurement
The ICF model provides the
conceptualization of disability, body structure and function, activity and
participation, and environment, nevertheless we are not yet ready to transition
from the concepts to the operationalization of them.
As the ICF is not well known yet,
we have contacted the staff of the National Institute of Rehabilitation who
specialize in issues of disability and understand better how the ICF could help
to operationalize concepts into questions to get a measure on disability.
Together we have arrived to some
conclusions:
i)
All the components of the
ICF refer to the same generic scale. This is a common feature that allows
comparability between levels of disabilities in spite of its reference to body
structure and function, or activity and participation, or environment.
ii)
The ICF recommends that
people who want to use it need to be trained by experts of the WHO. For
instance, National Statistical Offices that are in charge of making census and
sample surveys, don’t have specialists in this issue, so they may have
difficulty using the ICF for preparing a suitable set of questions.
iii)
The transition from
concepts to empirical measures has to be done by professionals from National Statistical
Offices, specialized in censuses and surveys and specialists from health
institutions that are familiarized with the use of the ICF. We are sure that
together they could do a great job.
[1] Adjunct
Director of the Demographic and Social Indicators Division of the National Institute of Statistics and
Informatic of Perú.