GENERAL DISABILITY
MEASUREMENT IN UGANDA, FOCUSING ON IMPROVEMENT IN METHODOLOGY AND CONCEPTS USED
A case study of a population and Housing Census and the Community Based Rehabilitation programme
A paper prepared for the
second meeting of the Washington Group on Disability Statistics
Ottawa, Canada 9th-10th
January 2003
Nabukhonzo Pamela
Uganda Bureau of Statistics
Summary
The paper focuses on improvements in methodology, questions and
concepts used in the 1991 and 2002 censuses. It also looks at the Community
Based Rehabilitation Programme’s approach to data collection on disability, in
addition to its linkage to the ICF.
General Disability measurement in Uganda, focusing on improvement in methodology and concepts used. A case study of a population and Housing Census and the Community Based Rehabilitation programme
1.0 Introduction
Population
and Housing Censuses remain the major source of Nationwide disability
statistics in developing countries because there have been very few disability
specific surveys carried out. These specific surveys are done but not on a
nation wide basis. In Uganda there are different key players in the area of
disability and these institutions collect their own data for specific needs
using different concepts, definitions and methodology. These institutions
include;
§
Uganda Bureau of
Statistics
§
Ministry of Health
§
Ministry of Gender
Labour and Social Development
§
Ministry of Education
and Sports
§
Non governmental
Organizations
Given
the growing concern in the area of disability measurement, a regional workshop
on Disability Statistics for Africa in September 2001 was held by United
Nations Statistics Division, New York and co-hosted by Uganda Bureau of
Statistics in Uganda. The broad objective was to strengthen national capacities
in the production, dissemination and utilization of disability data for policy
development and formulation.
The
workshop was a landmark in the area of disability measurement as it focused on
the following areas among others; use of ICF in defining concepts and the
design of data collection instruments. It was after this workshop that UBOS
realized the need for improvement in the area of general disability
measurement, therefore prompting improvement of the question on disability in
the 2002 Population and Housing Census.
This
paper therefore highlights an improvement in the concept and methods used in
general disability measurement, focusing on the two data collection programmes:
1.
Population and Housing
Census (1991 and 2002)
2.
The Community Based
Rehabilitation (CBR) programme
2.0 Improvements in Methodology and
concepts
2.1 Comparison of the 1991 and 2002
Population and Housing Censuses
Uganda
has conducted Population and Housing Censuses since 1911 on a decennial basis
but questions on disability were only included in the last 2 censuses (1991 and
2002). A comparison on the different concepts and methodology used is shown
below:
|
1991 Census |
2002 Census |
Methodology |
1.
2 questionnaires (short and long) were administered. The long
questionnaire included questions on disability and was administered on 10%
sample 2.
The long questionnaire was only administered to household population
and excluded institutional population. |
1.
Had complete coverage 2.
Had 1 questionnaire administered to everyone (both household and
institutional population) |
Questions asked and concepts used |
Question was phrased, as “Is there anyone who was in the
household on the census night and is disabled?” Codes adopted for: A. Nature of
Disability 1.
Blind 2.
Deaf/dumb 3.
Amputee 4.
Leper 5.
Epileptic 6.
Cripple/Lame 7.
Mentally Retarded 8.
Others N.E.S. 9.
Not Reported B. Cause of
disability 1.
Born 2.
Disease 3.
Accident 4.
War injury 5.
All others 6.
Not reported |
Question was phrased as “Does (NAME) have any
difficulty in moving, seeing, hearing, speaking or learning, which has lasted
or is expected to last 6 months or more?” Codes adopted for: A. Type of
disability 1.
None 2.
Limited use of legs 3.
Loss of leg(s) 4.
Limited use of arms 5.
Loss of arm(s) 6.
Serious problem with back spine 7.
Hearing difficulty 8.
Unable to hear (deafness) 9.
Sight difficulty 10.
Blindness 11.
Speech impairment 12.
Unable to speak (mute) 13.
Mental Retardation 14.
Mental illness (strange behaviour) 15.
Epileptic 16.
Rheumatism 17.
Others (specify) What caused this difficulty (ies)? B. Cause of
disability 1.
Congenital (born with a disability) 2.
Disease/illness 3.
Transport accident 4.
Occupational injury 5.
Other accident 6.
War 7.
Natural ageing process 8.
Other causes (specify) C. Rehabilitation/assistance of disability 1.
None 2.
Surgical operation 3.
Medication 4.
Assistive Devices 5.
Special education(mentally retarded) 6.
Braille training 7.
Skills training (Vocational) 8.
Sign language training 9.
Counseling 10.
Others (specify) |
Definition of Disability |
Definition
as given in the manual, Disability was defined as
any condition, which prevents a person from living a normal social and
working life. |
Definition
as given in the manual, “A person with a disability is defined as one who is limited in the
kind of or amount of activities that he or she can do, because of ongoing
difficulty (ies) due to a long-term physical condition or health problem that
has lasted six months or more. This
includes all those difficulties that are expected to last more than six
months.” |
Summary |
1.
The use of the term “disability” was used in the global question 2.
Information was collected for one type of disability 3.
Results revealed a Prevalence rate of 1.1% |
1.
Included information on rehabilitation measures 2.
The term “disability” was avoided in the global question. 3.
Multiple disabilities were taken care of.(at most 2 types) 4.
The definition took care of the duration of difficulty |
In light of the question matrix, the issue of
severity was left out during the 1991 census, because the stakeholders at that
time felt that the results would be subjective. Similarly, severity was left
out of the 2002 population and housing Census for the same reason.
2.2 Community Based Rehabilitation
Programme
In 1992, the Government of Uganda
adopted Community Based Rehabilitation (CBR) as an appropriate service strategy
to reach more Persons With Disability (PWDs). This programme is being
implementation under the Ministry of Gender, Labour and Social development. The
programme has since been running in 16 districts out of the 56 districts in the
country.
During implementation of CBR, the
programme has undergone both internal and external evaluations, which have
revealed a number of successes, weaknesses and gaps in specific areas. Some of
the weaknesses related to data collection that were pointed out during the 2000
evaluation include;
The evaluation therefore recommended
that the Uganda CBR programme should make effort to develop standardized
systems to collect information at all levels and to establish an adequate
capacity for supervision, monitoring and reporting.
In light of these findings, the
national CBR steering committee instituted a task force, which through
consultations, agreed that the national CBR programme should develop
information systems, which not only satisfy the specified needs but also adapt
to the conditions in the districts as regards collection, compilation and presentation
of data on disability.
The programme divided the information
system into 4 sections which cover all administrative levels up to National
level to ensure standardized flow of information as follows:
Disability is defined as
difficulties/restrictions in performing daily activities leading to failure to
participate like other people. If a person experiences difficulty in one or
more of the following areas they can be considered to have a disability;
seeing, hearing, speaking (using language or conveying messages), moving around
or using body parts, learning, if a person gets fits, has strange behaviour,
loss of skin feeling, and others not mentioned here.
In assessing abilities and inabilities,
the CBR volunteer who is responsible for collecting information is required to
take care and observe the PWD carrying out specific activities before
recording. This form addresses the following areas:
Self-care, speaking and conveying
messages, learning, mobility, pain, strange behaviour, gainful occupation,
attitude, fits and loss of feeling (skin sensation).
Severity of disability is recorded as
mild, moderate or severe. This is from the community workers point of view. The
duration and cause of disability is also recorded. It also takes care of all
domains of well being (i.e. seeing, speaking, Education, employment etc.)
This was recorded using an observation
checklist; this data is filled because rehabilitation depends on the home and
community environment. Environment factors therefore cover the following: -
For international comparison of
collected data from the CBR programme is mapped onto the ICF. It can be
realized that some of the chapters have not been touched at all, for the others
at least one of the components is mentioned. The constructs/qualifier of ‘body
structures’ is not mentioned at all. This is shown in the appendix .
Nation wide data on disability in
Uganda is obtained from censuses and these are not comprehensive. Currently, through administrative data
collection from the CBR programme this will be the only comprehensive source on
disability data although this is not conducted on nationwide basis.
It is observed that the issues raised
under the question matrix were to a great extent included in the last census
and the CBR programme. The census covered the issue of “ domain,
etiology/causes and duration” but omitted issues like severity. Similarly the
CBR programme addresses “ domain, etiology/causes and duration” and includes
severity.
Major group of ICF |
Availability
of data in CBR assessment form |
Body functions |
Availed in assessment form |
Chapter 1:
Mental functions |
Yes |
Chapter 2:
Sensory functions and pain |
Yes |
Chapter 3:
Voice and speech functions |
Yes |
Chapter 4:
Functions of the cardiovascular, haematological, immunological and
respiratory |
Not
Available |
Chapter 5:
Functions of the digestive, metabolic and endocrine systems |
Not
Available |
Chapter 6:
Genitourinary and reproductive functions |
Not Available |
Chapter 7: Neuromusculoskeletal
and movement-related functions |
Not Available |
Chapter 8:
Functions of the skin and related structures |
Yes |
Body Structures |
Not Available |
Activity and Participation |
Not Available |
Chapter 1:
learning and applying knowledge |
Yes |
Chapter 2:
general tasks and demands |
Yes |
Chapter3: communication |
Yes |
Chapter 4:
mobility |
Yes |
Chapter 5:
Self care |
Yes |
Chapter 6:
Domestic Life |
Yes |
Chapter 7:
interpersonal interactions and relationships |
Not
Available |
Chapter 8:
Major life areas |
Yes |
Chapter 9:
community, social and civic life |
Yes |
Environment Factors |
Not Available |
Chapter 1:
products and technology |
Not Available |
Chapter 2:
Natural environment and human-made changes to environment |
Yes |
Chapter 3:
Support and relationships |
Not
Available |
Chapter 4:
attitudes |
Yes |
Chapter 5:
services, systems and policies |
Not
Available |