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.

 

2.2.1 Data Collection Instruments

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:

  1. Identification, registration and baseline information forms- used to identify PWDs and as an inclusion or exclusion criterion for all households.
  2. Assessment, follow up and referral forms - consists of 3 forms aimed at collecting information after assessing individuals with disabilities, planning interventions, follow up and referral for intervention. Its purpose is to gather information on a client’s abilities and inabilities before planning a specific intervention. In addition, to be able to know the cause of disability in an area, helps in planning strategies for disability prevention.
  3. Supervision and monitoring guidelines
  4. Reporting guidelines

 

2.2.2 Characteristics of general measures currently used

Definition

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.

 

Methodology of collection

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).

 

Questions on disability

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.)

 

Data on environment and Participation

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: -

 

 

2.2.3 Mapping this data to ICF

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 .

 

2.2.4 Conclusion

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

APPENDIX

Table showing mapping of CBR data onto the ICF major groups