UNICEF LEADERSHIP DEVELOPMENT PROGRAMME

ACTION LEARNING PROJECT

Promoting Inclusion: Addressing Challenges of Availability of Data on

Children with Special Education Needs in Malawi.

Simon Mwirigi, UNICEF MALAWI, November 2014

FINAL Report submitted for the Action Learning Project, third cohort of UNICEF's
Leadership Development Programme in partnership with INSEAD.

Sponsor: Jim Ackers, Regional Education Adviser, UNICEF Bangkok

TABLE OF CONTENTS
TABLE OF CONTENTS .......................................................................................................................i
List of Acronyms ..................................................................................................................................... iii
Executive Summary................................................................................................................................ iv
1.0

Introduction ............................................................................................................................. 1

2.0

Scope of the Problem ........................................................................................................... 2

2.1

Demographic and Economic Context .................................................................................. 2

2.2

Legislation and Policies on Disability.................................................................................... 2

2.3

Special Needs Education in Malawi ...................................................................................... 3

2.4

Scope and Limitations of the Project .................................................................................... 3

3.0

Objectives of the Project ..................................................................................................... 4

4.0

Literature Review .................................................................................................................. 5

4.1

Challenges in Data Collection and Classification ................................................................ 5

4.2

Lack of Comprehensive Data................................................................................................. 6

4.3

Tools for Data Collection and Analysis ................................................................................ 7

5.0

Results and Discussions from Data Collection ................................................................... 8

5.1

Methodology ............................................................................................................................. 8

5.2

Summary of Key Results ......................................................................................................... 8

5.2.1

Challenges in Data Collection ................................................................................................ 8

5.3

Available Data on Children with Disability .......................................................................... 9

5.4

Strategies and Tools for Disability Data Collection .......................................................... 10

6.0

Actions Taken or Planned as a Consequence of Research ............................................... 11

7.0

Recommendations .............................................................................................................. 11

7.1

Recommendation 1: Test the Washington group Survey Module .................................. 11

7.1.1

Description of Recommendation ........................................................................................ 11

7.1.2

Risks and Benefits of Recommended Action .................................................................... 12

7.1.3

Resources and Commitments Required.............................................................................. 12

7.2

Recommendation 2: Inclusion of WG module in DHS 2015 ......................................... 12

7.2.1

Description of Recommendation ........................................................................................ 12

7.2.2

Risks and Benefits of Recommended Action .................................................................... 13

7.2.3

Resources and Commitments Required.............................................................................. 13

7.3

Recommendation 3: Public Awareness Campaign on Disability .................................... 13

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7.3.1

Description of Recommendation ........................................................................................ 13

7.3.2

Risks and Benefits of Recommended Actions................................................................... 14

7.3.3

Resources and Commitments Required.............................................................................. 14

8.0

Conclusions and Lessons Learnt ..................................................................................... 14

8.1

Conclusions ............................................................................................................................. 14

8.2

Leadership Lessons Learned ................................................................................................ 15

References ................................................................................................................................................. 16
Annex A: Interview guide ..................................................................................................................... 18
Annex B: Key Informants .................................................................................................................... 20
Annex C: ICF Functional Model of Disability ..................................................................................... 20
Annex D: Summary of Transcribed Responses from Interviews ...................................................... 21

ii

List of Acronyms
ALP

Action Learning Project

C4D

Communication for Development

CMT

Country Management Team

CRPD

Convention on the Rights of Persons with Disabilities

DFID

Department for International Development

DHS

Demographic and Health Survey

EMIS

Education Management Information System

GDP

Gross Domestic product

GOM

Government of Malawi

ICF

International Classification of Functioning, Disability and Health

IHS

Integrated Household Survey

MICS

Multiple Indicator Cluster Survey

MoE

Ministry of Education

NSO

National Statistical Office

PME

Planning Monitoring and Evaluation

SNE

Special Needs Education

SOWC

State of the Worlds Children

UNESCO

United Nations Education Scientific and Cultural Organization

USAID

United States Agency for International Development

WG

Washington Group

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Executive Summary
The World Education Forum held in Dakar in 2000 adopted the Dakar Framework for Action
(FFA) that called for inclusive education practices to ensure that groups of children who are most
vulnerable and disadvantaged are included in the education process and have access to schools.
Children with learning disabilities are some of the most vulnerable and disadvantaged in the
average school systems (UNESCO, 2009), and many of them are not accessing schools so we have
little information about their status.
National governments, especially in developing countries such as Malawi, have not focused
extensively on such vulnerable groups of children who are widely excluded from formal education
systems. Most of these countries do not have reliable or comprehensive data that can be used in
formulating and developing quality and effective education programmes that can address the needs
of children with disabilities.
UNICEFs States of the Worlds Children report of 2013 points out the extent to which children
with disabilities are excluded and marginalized from resources and social services. This exclusion
often stems from the invisibility of this vulnerable group of children. This invisibility in turn stems
from lack of reliable and comparable data and information that is required to place children with
disabilities more prominently on the development agenda.
In Malawi, some data on disability exists, but it is not comprehensive, providing only rough totals
of figures collected in a number of past household surveys and censuses, notably the 2008 census.
UNICEF Malawi has identified the need for comprehensive data on children with disabilities as
the basis on which effective programmes can be developed. Effective programmes for children
with special needs will be built on accurate awareness of the special needs of children with
disabilities (UNICEF Malawi, 2013). Specifically for education, developing quality education
programmes that address the special needs of children with disabilities relies on reliable
information and data for planning, monitoring and assessment.
This action learning project sought to identify the challenges that are encountered in collecting
data on children with disabilities. It also explored the gaps in data on children with special
education needs in Malawi. The project then explores possible strategies and tools that can be
employed to improve collection, storage and analysis of data on children with disabilities in general,
and special education needs in particular, in Malawi.
The recommendations from this project are:
-

UNICEF Malawi to undertake field testing of the new survey module on child functioning
and disability that has been developed by UNICEF and Washington Group. Testing the
module in Malawi will give the country opportunity to provide input to the final tool, thereby
ensuring that the tool is adapted to local context and any cultural and social concerns are
addressed before finalization of the tool.
Inclusion of the new disability module in the upcoming Demographic and Health Survey
(DHS) in Malawi in 2015 in order to collect and analyse comprehensive data on children with
disabilities to inform policy formulation, resource prioritization and to advance the inclusion
of these children in education and other social services.
iv

In addition to collecting periodic data through DHS and other Household survey tools,
UNICEF Malawi needs to support the strengthening of data collection at schools using
existing, but improved tools including annual school census and Education Management
Information Systems (EMIS).
-

Social and cultural practices within the country continue to encourage families to hide away
children with disabilities for fear of discrimination. A sensitization campaign is recommended
to address stigma and discrimination against people with disabilities.

The outcome for this project will be tested tools for data collection and analysis. The ultimate
result in the long run will be availability of high quality and comprehensive statistics on children
with special needs in Malawi that is comparable internationally and that influences the
prioritization of disability issues in the country.
This project has broadened my perspective and understanding of a key strategic area that is at the
core of the organizations focus. Working in this project has helped me to develop a number of
leadership competencies including formulating strategies and concepts, persuading and influencing
and relating and networking.

1.0 Introduction
We contribute to [] exclusion [of Children with disabilities] by failing to
gather enough data to inform our decisions. When we fail to count these
children, we are failing to help them count for all they should in their
societies.
Anthony Lake, Executive Director, UNICEF (State of the Worlds Children, 2013)

The World Education Forum held in Dakar in 2000 adopted the Dakar Framework for Action
(FFA) that called for inclusive education practices that are more child-centred and focused on
achieving good learning outcomes for all children, including those with a diverse range of abilities.
Such inclusive education practices would ensure that groups of children who are most vulnerable
and disadvantaged are included in the education process and have access to schools. Children
with disabilities are some of the most vulnerable and disadvantaged in normal school systems
(UNESCO, 2009).
National governments, especially in developing countries such as Malawi, have not focused
extensively on such vulnerable groups of children who are widely excluded from formal education
system. Most governments in developing countries have focused more on increasing the provision
of free and compulsory primary education, achieving gender equality and adult literacy.
Developing quality education programmes that address the needs of children with special needs
relies on reliable information and data for planning, monitoring and assessment. According to
UNESCO, many countries do not have reliable nor comprehensive data that can be used in
formulating and developing quality and effective education programmes that can address the needs
of children with disabilities.
UNICEFs States of the Worlds Children (SOWC) report of 2013 indicates the extent to which
children with disabilities are excluded and marginalized from resources and social services. The
SOWC report quotes a 2004 study in Malawi that found that a child with a disability was twice as
likely to have never attended school as a child without a disability. This exclusion often stems from
invisibility of this vulnerable group of children. The invisibility in turn stems from lack of reliable
and comparable data and information that is required to place children with disabilities more
prominently on the development agenda.
In Malawi, some data on disability exists, but it is not comprehensive, providing only rough totals
of figures collected in a number of past household surveys and censuses, notably the 2008 census.
UNICEF Malawi has identified the need for comprehensive data on children with disabilities as
the basis on which effective programmes can be developed. This is especially true for programmes
that address children with special education needs. Developing quality education programmes that
address the needs of children with special needs depends on reliable information and data for
planning, monitoring and assessment. Moreover, effective programmes for children with special
needs will be built on accurate awareness of the special needs of children with disabilities
(UNICEF Malawi, 2013).

2.0 Scope of the Problem

2.1 Demographic and Economic Context
Malawi is a densely populated, landlocked southern Africa country that boarders Tanzania to the
North and North-East, Zambia to the West and Mozambique to the South and South-West.
Demographically, the country has a population of 16.3 million people (World Bank, n.d.) with over
half this population under 18 years of age. The population is largely rural based with only about
15 percent residing in the urban areas (GOM, 2010).
Malawi is one of the worlds least developed countries, ranking 166 out of 178 countries in the
2010 Human Development Report (UNICEF Malawi, 2012), making it one of the poorest
countries in the world. Agriculture accounts for more than 90% of Malawi's export earnings and
contributes about 45% of its gross domestic product (GDP). Furthermore Agriculture supports
90 percent of Malawis population. The country's export trade is dominated mainly by tobacco.
Tea, coffee, and sugar are also grown for export (Loeb and Eide, 2004).
In the early years of this decade, the government of Malawi had initiated an economic reform
agenda that sought to address a myriad of problems ranging from poor infrastructure, limited
economic base and challenges in provision of health services and especially the high prevalence of
HIV and AIDS, among other priorities. These challenges persist on several fronts, including a
rapidly growing population, a high HIV/AIDS infection rate [] limited natural resources, and
high levels of inequality the result of an unbalanced development strategy, and the corrosive effects
of recurring droughts, poor resource management, and environmental degradation. (Loeb and
Eide, 2004, p.28).
2.2 Legislation and Policies on Disability
Malawi has enacted several policies and legislative frameworks on disability. In 1971 the
Government established the Handicapped Persons Act which provided for setting up of a
government agency responsible for promoting the welfare of people living with disabilities,
providing welfare services and rehabilitation, and administering vocational and special training
centres for people living with disabilities. (Munthali, 2011). This act appeared to promote the
perception of providing services to people living with disabilities through charity and not on
human rights or social development considerations (Loeb and Eide, 2004).
The current Constitution of Malawi, which repealed the Constitution of 1966, was adopted in 1994
and came into force a year thereafter. This constitution recognised and incorporated the disability
sector and emphasised the need to implement programmes based on human rights and social
development considerations. While disability issues had in the past been handled by different
Ministries including the Ministry of Health and Ministry of Community Services, the creation of
the Ministry Responsible for People with Disabilities was a major milestone after 1994 (Loeb and
Eide, 2004; Munthali, 2011).
In 2012, the country enacted a Disability Act to replace the Handicapped Persons Act. The
Disability Act is based on the social model of disability that perceives disability as a human rights
concern and views the challenges associated with disability as attributable to environmental
2

barriers, individual prejudices and institutional discrimination that impose restrictions upon people
living with disabilities. The Act reflects the principles of the UN Convention on the Rights of
Persons with Disabilities (CRPD) which Malawi is a signatory (Chilemba, 2012). The country has
also ratified the CRPD (UNICEF, 2013). However, despite existence of these policies and
legislation, people living with disabilities are largely excluded from social services such as health
and education.
2.3 Special Needs Education in Malawi
Malawi is a signatory to several world declarations and agreements that advocate for the provision
of adequate education opportunities for learners with special needs. These agreements and
declarations include the pledge to the Salamanca Statement which advocates for inclusion of
learners with disabilities in the mainstream education and the Dakar Framework for Action that
addresses the right to education for all children, youth, and adults with disabilities (Chavuta et. al.,
2008). From these agreements, Malawi has developed strategies to respond to the educational
needs of learners with special educational needs. The national special needs education policy has
been established to provide a framework for Special Needs Education (SNE) in Malawi (MoE,
2009).
Provision of SNE services is predominantly done through special schools and resource classroom
centres within mainstream schools. Not all schools have established these centres, and hence the
few available ones are not adequate to accommodate all learners with special education needs in
Malawi (Chavuta et. al.).
Data from Malawis Education Management Information Systems (EMIS) shows that there are
93,656 and 2,911 learners with Special Needs in primary and secondary schools respectively
(EMIS, 2013). These figures may not reflect the actual number of learners with disabilities in the
country because education system in Malawi does not have formal assessment tools for
identification of disabilities. Moreover, the majority of children with disabilities do not attend
school, hence the numbers captured in EMIS grossly under-estimates the total number of school
age children with disabilities.
2.4 Scope and Limitations of the Project
This project will focus on addressing the gaps and the challenges of collection and analysis of data
on children with special education needs in Malawi. The bulk of the study will focus on educational
programmes for children with special needs and will not directly address programmatic issues of
other social programmes (such as health, nutrition, and child and social protection) and how they
relate to children with special needs. This smaller scope has been necessitated by the limited time
and resources available for the project

3.0 Objectives of the Project

Children with disabilities make up one of the most socially excluded groups in our society. Robson
and Evans (2003), quoting the World Bank, note that the vast majority of children with disabilities
in developing countries do not go to school and are absent from school data sets. They are also
invisible on the national policy agenda. In order to change this sad state of affairs and to establish
sound policies and effective services and support to this marginalized group, sound data on
children with disabilities is required.
Data on disability is particularly weak in developing countries (Eide and Loeb, 2005; UNESCO,
2004). One of the key recommendations of UNICEF in its State of the Worlds children report
of 2013 was calling for international commitment to promote concerted research to generate
comparable and reliable data to guide planning and programming and to place children with
disabilities more clearly on the development agenda.
This action learning project seeks to identify and address the challenges that are encountered in
collecting data on children with disabilities. The main goal of the project is to improve and
strengthen the depth, breath and quality of data on children with disabilities in Malawi. Specifically,
the objectives of this ALP are to:
-

Understand the challenges faced by policy makers and programme implementers in

addressing the needs of children with disabilities where comprehensive data is lacking
Explore the gaps in currently available data on children with special education needs
Explore possible strategies that can be employed to improve availability of data on children
with special education needs in Malawi
Make recommendations of the strategies and tools that can be employed to address
challenges in data collection and gaps in data on children with special needs.

The deliverables for this project will be tested tools for data collection and analysis. The ultimate
result in the long run will be availability of high quality and comprehensive statistics on children
with disabilities in Malawi that is comparable internationally and that influences the prioritization
of disability issues and promotes inclusion of children with disabilities in the country.
UNICEFs Global Education Strategy and UNICEF's 20142017 Strategic Plan place special
emphasis on equity and improving learning outcomes for all children, especially children with
disabilities. It is hoped that the outcomes of this project will lead to enhanced availability of good
quality and comprehensive data on children with disabilities. This data will be critical in informing
development of sound policies that address the challenges faced by this marginalized group.

4.0 Literature Review

There is a growing body of research on disability and exclusion. The bulk of this research has
been done for developed countries but robust data on disability is difficult to find especially in
developing countries (UNICEF, 2013; Durkin 2001; Bines and Lei, 2011).
4.1 Challenges in Data Collection and Classification
In order to collect meaningful data that is comparable across countries and regions and that can
be used to guide policy decisions, it is important to have a standard definition that is acceptable to
majority of experts and stakeholders in this field. The definition of disability varies widely between
countries and regions of the world, and this affects the collection of accurate and comparable
disability statistics (DFID, 2010).
It has been widely acknowledged that defining disability has been a challenging and contentious
process (UNESCO, 2006; Metts, 2004; Croft, 2013, Filmer, 2005). Croft (2013), quoting a DFID
white paper, notes that defining disability is complicated and controversial. Metts (2004) argues
that disability is a complex medical, social and environmental phenomena that has not been fully
analysed and understood. Mont (2007a) goes further to state that Disability and health are
difficult concepts to define and measure. (p.1658).
According to Mont (2007), disability can be defined either through the medical model or social
model. The medical model defines disability as a physical, mental or psychological condition that
limits a persons activities while the social model conceptualizes disability as arising from the
interaction of a persons functional status with the physical, cultural and policy environments
(Shakespeare and Watson, 2002). Robson and Evans (2003), quoting World Bank Disability
Group, emphasize that disability is more than a description of a specific health issue but is rather
affected by culture, social institutions and physical environment.
The social model is now widely accepted as it recognizes the human right dimension of disability
and also recognizes the correlation between disability and social exclusion (UNESCO, 2009). The
working definition that was adopted by United Kingdoms DFID reflects the social model view.
It states that disability is the long term impairment leading to social and economic disadvantages,
denial of rights, and limited opportunities to play an equal part in the life of the community
(DFID, 2000; p. 2).
The medical model of disability equates disability with impairment and when used in surveys, seeks
to count rates of impairment (Croft, 2013). This approach encounters cultural problems in some
countries. According to Mclaughlin and Ruedel (2005), many cultures view impairments negatively
and so a model that is based on impairment is likely to cause negative perceptions of disability.
Impairment-based survey systems are thus more likely to be associated with social stigma (Fujiura,
Park and Rutkowski-Kmitta, 2005).
Another problem associated with stigma is categorization of disability. Disability advocates and
some international organizations, Mclaughlin and Ruedel (2005) observe, challenge the need to
categorize children with disabilities arguing that such labelling perpetuates stigmatization.
However, the writers further argue that it remains important to appropriately distinguish children
5

with disabilities from those without. Nonetheless, they conclude that inappropriate and
unnecessary labelling can lead to long term negative consequences for the affected children.
4.2 Lack of Comprehensive Data
The 2010 Education for ALL Global Monitoring Report on marginalization stated that the starting
point for extending education for disabled children should be a credible needs assessment based
on a national survey of prevalence of disability (UNESCO, 2010). However, the difficulty of
collecting useful data on children with disabilities that affect their access to school has been well
recognized (Croft, 2013 quoting Ainscow, 1999).
Eide and Loeb (2005) point out that data on disability in general is particularly weak in developing
countries. UNESCO (2004) concurs with this view with regard to disability data on education. It
states that existing data sets in developing countries are remarkably weak. The limited data available
shows that disabled children have very unequal access to education compared to non-disabled
peers (Bines and Lei, 2011).
Lack of reliable and adequate data has been a significant factor that has contributed to the neglect
of disability issues including policy development to address disability in many countries
(UNESCO, 2009). Without reliable statistical data, it has proved difficult to convince governments
and policy makers to prioritize disability issues on the development agenda (Eide and Loeb, 2005).
Mont (2007) further argues that availability of high quality, internationally comparable data on
disability that can be used for planning, implementation, monitoring and evaluation of inclusive
policies is often not available.
In addition there are major data gaps on school going children with disability. To make matters
even worse, few countries have developed systems that allow for counting of out-of-school schoolage children (UNESCO, 2009). According to UNICEF (2013), the lack of sound data on these
children renders them invisible to policy makers, social services providers and even to their own
communities.
In the face of all these challenges, the statistical view of global disability is largely based on
extrapolations and assumptions (Fujiura et. al., 2005; p.297). The Global Burden of Disease
estimated in 2004 that the prevalence of disability was at 19.4% of the global population while the
World Health Survey estimates gave a prevalence of 15.6% (WHO, 2008). Eighty percent of the
people living with disabilities worldwide live in developing countries (Munthali, 2011 quoting
Hope, 2003). Further, it is estimated 115 million children are out of school, and a third of these
are children with disabilities (Lawrence, 2004).
In 2003 and 2008 it was estimated that 4.18% of Malawis population consisted of people with
disabilities (Munthali, 2011). The 2008 census indicated that the prevalence of disability among
children was 2.4% (UNICEF Malawi, 2013). Bearing in mind the foregoing discussion on the lack
of reliable information, the estimates for Malawi may not be an accurate representation of the
situation on ground.

4.3 Tools for Data Collection and Analysis

According to Croft (2013), the most comprehensive effort to measure disability from the social
model perspective is the World Health Organizations (WHO) International Classification of
Functioning, Disability and Health (ICF). The ICF provides an in depth elaboration of the
conceptual components that make up disability (See Annex C). However, the ICF has been
criticized for being too complex (Mclaughlin and Ruedel, 2005), medically inclined (UNESCO,
2009) and not being fully developed yet for broader application. Nonetheless the ICF provides a
comprehensive approach to standardized and classify disability.
Some survey tools used in data collection have incorporated the social model of defining disability.
UNICEFs Multiple Indicator Cluster Survey (MICS) has included an optional disability module
that is explicitly aligned with ICF. The performance of the disability module of the MICS,
particularly in relation to younger children, has been criticized for over reporting incidences of
disability. This over-reporting was attributed to cultural issues where MICS responses may have
depended on situational factors such as the training of the interviewer, social acceptability of
response and development stage of the child (Croft, 2013, quoting Hollenweger, 2008).
Two main types of systems for data collection in Malawi include national census and household
surveys. As pointed out by Eide and Loeb (2005), most low income countries carry out censuses
at regular intervals. Some of these censuses include questions on disabilities. In Malawi the
population census is carried out every 10 years. Due to the high cost and substantial data demands
of national censuses, the detail and depth of any questions on disability are severely limited. The
infrequency of these censuses also limits their value as a tool for planning services and programmes
(Robson and Evans, 2003).
Household surveys involve the systematic sampling of households in a country. In Malawi,
Integrated Household Surveys (IHS) are carried out every 5 years. The latest one was carried out
between 2010 and 2011. Generally, the reliability and validity of data collected through Household
surveys depend on the construction and implementation of well designed, statistically
representative sampling frames as well as high rates of response. The detail of disability related
questions is likely to be severely limited in household survey questionnaires due to the large scale
samples required for accuracy and validity. In Malawi, the last IHS did not include questions on
disability except one that was alluded to in a question that asked whether the reasons for
discontinuation of education was illness or disability (NSO, 2011).
The UN formed the Washington City group on Statistics (WG) to address some of the challenges
faced in collecting sound data on people with disabilities. A major objective of the WG is to guide
the development of a small set of general disability measures that are suitable for use in censuses,
sample-based national surveys, or other statistical formats, which provide basic but necessary
information on disability throughout the world (CDC Online). The group has developed a module
on child functioning and disability for use in surveys and censuses. The module uses the ICF
framework and reflects current thinking on disability. More importantly for the current study, the
tool can produce internationally comparable data and covers children between the ages of 2 and
17 years (Cappa, 2014).

5.0 Results and Discussions from Data Collection

5.1 Methodology
In this study, information on the current situation of statistics on children with disabilities in
Malawi was collected through semi-structured interviews. I interviewed key players and
stakeholders on issues of disability in general and children disability in particular. Those
interviewed included key staff in the National Statistical Office of Malawi, senior staff from
Ministries of Education and from Ministry of Disability. In addition, I interviewed key staff in
UNICEF Malawi, including the Chief of Social Policy, Chief of Planning, Monitoring and
Evaluation, Education Specialist and Monitoring and evaluation specialist. In order to learn from
other UNICEF offices that have worked in this area and attempted to address some of the
challenges addressed by this project, the Social Policy officer from UNICEF Montenegro and
Statistics Specialist from UNICEF Headquarters were interviewed.
The interviews sought to obtain primary information on the challenges of data collection, the gaps
in current data sets as well as the possible tools that could be used to efficiently gather information
and data on children with disabilities.
The study employed purposive sampling in selecting key informants. Tongo (2007) argues that
purposive sampling technique is most effective when one needs to study certain domains that have
knowledgeable experts. It is also a more economical method compared to random sampling. In
the current study, as discussed above, I focused on experts in Education, Social Policy, Data and
Analytics. The sample included experts working in Malawi, New York and Montenegro.
Most of interviews were face to face, and were conducted in the offices of key informants. Two
of the interviews were telephonic (conducted over skype) due to geographic distance between
interviewer and key informants. The author conducted all the interviews, which averaged
approximately 45 minutes, although two interview lasted slightly over one hour. All interviews
were recorded on tape to make it easy to transcribe. The interview guide is shown in Annex A.
At the end of each session, the interviews were transcribed and key information pertinent to the
study were highlighted. At the end of all interviews, the data was coded by identifying, categorizing
and labelling the main themes and patterns in the data. The coded information was then
summarized and further analysed using simple text based tables in Microsoft Excel.
5.2 Summary of Key Results
The following subsections provide key results that were obtained from interviews. These results
are largely qualitative due to the nature of the study. The results are summarized by research
objectives in order to comprehensively cover all targeted research areas. A summary table of key
points transcribed from interview is provided in Annex D.
5.2.1 Challenges in Data Collection
Measuring disability in general is difficult, and measuring disabilities in children is especially
challenging. The main challenges relate to the understanding of disability in general and how to
define it in relation to children. As indicated in the literature review section, the definition of
disability should incorporate both medical and social dimensions of disability. Using narrow
8

medical definitions of disability has led to low prevalence figures in Malawi. Broader definitions
that recognise social and environmental dimensions of disability have tended to provide more
reliable data. Data collection methods that incorporate the social dimension capture not only the
impairment but also the effect of that impairment on the functioning and participation of children
in their environment (Key Informant [P2], hence forth in this paper [Px] will denote Key Informant x).
The second challenge that is encountered in collecting data on children with disability is related to
the stigma that some people and societies associate with disability. Due to perceived stigma
towards children with disability, parents may be " careful not to admit that their child has
disability and will end up hiding the child [P3].
In addition, collecting data on children is difficult because the person giving this information is
usually not the child, but third parties such as parents. Parents will give you their opinion about
the child, and this opinion may not always be valid for certain cases of disability such as hearing
and sight. Furthermore, collecting data on disability in children is problematic because children are
in constant process of developmental change, and it can be difficult to distinguish activity
limitations of the child from variations in normal development.
In developed countries disabilities in children are identified through registries (e.g. Cerebral Palsy
Registry in Western Australia [P2]) and in medical and education settings. This identification
infrastructure is often lacking or weak in developing countries. In Malawi, schools fill out annual
census forms and submit these to district education boards. However, the forms are not elaborate
enough to capture all data on children disability such as the range of disabilities and the extent and
severity of disabilities. Moreover, teachers lack sufficient knowledge to routinely identify a wide
range of disabilities except the most extreme ones [P1, P6]. This problem is exacerbated by the
fact that in Malawi a large number of children with disabilities do not attend school.
5.3 Available Data on Children with Disability
In Malawi, the existing data on disability shows different prevalence levels depending on the tool
that was used to collect the data. According to data that was provided by key informants and also
obtained from various past surveys, the percentage of people with disability in Malawi varies from
2.9% (Survey of Handicapped Persons, 1983), to 14% (World Health Survey, 2003). The
prevalence of disability in Malawi was found to be 4.18% in a 2003 survey on living conditions
among people with activity limitations. These differences are large and may be attributed to the
way different survey tools were formulated and the type of definition that the particular survey
attached to disability.
As can be seen in Figure 1 below, some survey tools used questions that were skewed towards the
medical model, and some used questions that were out rightly stigmatizing. Tools that were based
on some type of activity limitations tended to have better results, though these also varied due to
lack of standardization and conformity of some questions to the social model of disability.

Figure 1: How Survey Tool Questions affected the reported Prevalence Rate of Disability in Malawi

As can be seen from Figure 1 above, some data on disability in Malawi is available. However, its
validity and accuracy is questionable as some of it was collected using tools that employed outdated
and stigmatizing terminologies. For instance, a 2004 Integrated Household Survey in Malawi had
a question that asked Are you physically or mentally handicapped in any way? Not surprisingly,
the final report from this survey did not include any data on disability.
Some data on specific areas of children with Special Education Needs is available. The department
of Special Needs at the Ministry of Education estimated that as of 2006, there were 43, 532 pupils
with Special needs of which 47% were girls. These data was collected through various sources
including school register systems, district education systems and national Education Information
Management System (EMIS). It was difficult to get information at one central place. Moreover,
the reliability and accuracy of this data was questioned by key informants [P1, P7]. As already
discussed in a previous section of this report, teachers lack sufficient knowledge to routinely
identify a wide range of disabilities except the most extreme or obvious ones.
5.4 Strategies and Tools for Disability Data Collection
In Malawi disability data has been collected through national censuses, Demographic Household
Surveys (DHS), Multiple Indicator Cluster Surveys (MICS) and specific studies targeted at people
with disabilities. Some of these tools used questions that were considered outdated, derogatory
and stigmatising, as discussed above. For instance, the question from the household survey in
2004 (Figure 1) discussed in section 5.3 above had gone further to ask In what ways are you
handicapped: Lame; Blind; Deaf; mentally disabled? Data collected using poorly designed
tools was of poor quality and unreliable.
The stigma associated with disability was largely due to cultural beliefs and lack of awareness by
communities and caregivers [P3, P4, and P8]. In Montenegro, UNICEF supported a huge disability

10

awareness campaign dubbed "Disability is not inability" [P3] that resulted in increased reporting
and enrolment of children with disability in schools.
At the global level, UNICEF is working with The Washington Group (WG) on statistics to
improve the methodology and tools for collection of disability data. The module that is being
developed reflects current thinking on child functioning and disability and focuses on limitations
to activity without using stigmatizing terms. This module has standard definitions and
classifications of disability that are based on the framework of the ICF. The tool aims to produce
nationally and internationally comparable disability data.
The WG tool is currently being tested and refined. A number of country offices including
UNICEF Montenegro, have been involved in the testing of the tool. The results are reported to
be very promising [P3]. The tool is expected to be ready for use as a module in other surveys or
as a standalone data collection instrument by end of 2014 [P2].

6.0 Actions Taken or Planned as a Consequence of Research

After developing the preliminary findings of the project, the author met with the Chief of Social
Policy and Planning and Monitoring sections in UNICEF Malawi, to discuss the findings and what
they meant for the country office. During the meeting, it was agreed that the involvement of the
Malawi country office in field testing a tool that will improve collection of data on children with
disabilities would be immensely beneficial to the country and the entire eastern and southern Africa
region. The author was mandated to make the necessary contacts with Analytics and Statistics
section in New York to concretize Malawis participation in field testing.
Through online communications with the Analytics and Statistics Section in New York, the author
has managed to obtain commitment for funding and technical support for field testing of WG tool
in December 2014. At present the details of field testing requirements are being refined, and the
involvement of key government and development partners is being sought. Local partners in this
endeavour are National Statistical Office of Malawi and USAID.
I plan to present the key findings of this study to the Malawi Country Management Team (CMT)
in September 2014. Thereafter, I hope bring together a coalition of key managers to support
recommended actions from this project.

7.0 Recommendations
7.1 Recommendation 1: Test the Washington group Survey Module
7.1.1 Description of Recommendation
The new survey module on child functioning and disability that has been developed by UNICEF
and Washington Group has so far been tested in a few countries including India, Cameroun, Haiti
and Montenegro. UNICEFs Data and Analytics Section in New York, the lead UNICEF section
that is working with Washington Group, plans further tests in additional countries. During
interviews, the Analytics section indicated their willingness to test the tool in Malawi if the country
office shows interest. They have gone further to promise funding and technical support should
the country office undertake to test the module.
11

In order for this recommendation to be implemented, the following UNICEF sections will need
to give their commitment to support and be involved: Planning Monitoring and Evaluation (PME),
Social Policy, Health and Education. Although the Data and Analytics Section has promised
funding and technical support, these three sections in Malawi will need to work with the researcher
and to engage key partners within the Ministry of Gender, Children, Disability and Social Welfare
and the department of Special Education.
Consultations between the researcher, PME and Social Policy sections have already commenced,
and if agreement to move ahead with the test is reached, then specific request will be made to Data
and Analytics section in New York. Bringing these different parties on board has presented a few
challenges.
7.1.2

Risks and Benefits of Recommended Action

One of the risks associated with this action is the lack of time to test the tool well. UNICEF Malawi
is currently involved in a midterm review, and as such staff are very busy and may not be available
to undertake another demanding task.
Another risk of carrying out the test is that the action of testing might create expectations that
support and resources will imminently be allocated to people living with disabilities, and so when
such support does not follow, the community may become disillusioned and will be reluctant to
participate in future surveys.
The benefits of carrying out the test far outweigh the risks. Testing the module in Malawi will give
the country opportunity to provide input to the final tool, thereby ensuring that any cultural and
social concerns are addressed before finalization of the tool. This involvement will also benefit
Malawi as it will present an early opportunity for the country to familiarise itself with the tool and
even translate it into local languages. This will save us time and effort when we get to use the tool
for actual data collection.
7.1.3

Resources and Commitments Required

As stated above, the Data and Analytics Section in New York has indicated its willingness to
finance and support testing of the new disability module in Malawi. Discussions within UNICEF
Malawi on the way forward will need to be finalized by end of September 2014 and the decision
communicated to New York. I will need commitment from UNICEF PME and Social Policy
sections that they will invest the required time and involvement to test the module in Malawi. I
will also require commitment of key players from the Ministries of Gender, Children, Disability
and Social Welfare and Education to provide technical staff to attend training and undertake the
tests.
7.2 Recommendation 2: Inclusion of WG module in DHS 2015
7.2.1 Description of Recommendation
Malawi is just completing the fifth round of MICS. Unfortunately, the WG Module on disability
was not ready for inclusion into this survey. However, the next round of Demographic and Health
Survey (DHS) in Malawi will be done in 2015. The survey as currently designed does not include

12

questions on disability. It is therefore recommended here that the WG Module on child

functioning and disability be included in DHS 2015.
In order for the disability module to be included, UNICEF needs to start lobbying and advocating
for this. The leading partners that steer DHS in Malawi are USAID, National Statistical Office
(NSO) and UNICEF. During discussions between this researcher and NSO, it became clear that
preparations for DHS2015 will commence shortly, so the proposal to include the disability module
needs to be brought to the table quickly.
Consultations within UNICEF (Researcher, PME and social Policy section) on inclusion of
disability module in DHS2015 are in progress. The next steps will be for UNICEF Malawi PME
section to make a formal proposal to DHS steering committee.
7.2.2

Risks and Benefits of Recommended Action

One risk of pursuing this recommendation is that key partners may not be persuaded on the
importance and urgency of inclusion of additional questions to an already long survey instrument.
Additional questions will require more time and human and financial resources. This may
discourage key partners from adopting the recommendation.
Inclusion of WG disability module in DHS2015 will result in improved quality and reliability of
data on children with disabilities, and the data will be nationally and internationally comparable.
Improved reliability and quality of data will better inform policy, UNICEF programming and
resource allocation to efficiently and effectively address the challenges faced by children with
disability.
7.2.3

Resources and Commitments Required

The decision to include disability module in DHS2015 has more or less been agreed within
UNICEF. Lobbying with the lead agency and National Statistical Office for inclusion of this
module should now commence and needs to be finalized by October 2014. Preparations for
translation of tool into local languages also needs to be planned even as we await the release of the
tool. Further, discussions with Data and Analytics section needs to be fast tracked to ring-fence
the funding that has been promised and identify technical support that will be provided.
7.3 Recommendation 3: Public Awareness Campaign on Disability
7.3.1 Description of Recommendation
The stigma associated with disabilities has rendered children living with disabilities largely hidden.
Social and cultural practices within the country continue to encourage families to hide away
children with disabilities for fear of discrimination.
A sensitization campaign is therefore recommended to encourage the social inclusion of children
with disabilities and reduce stigma. In UNICEF Malawi, the Communication for Development
(C4D) section is the technical team that would design and carry out these campaigns. Social Policy
and Child Protection sections should work with C4D to roll out an appropriate campaign prior to
the time that DHS2015 will commence.

13

7.3.2

Risks and Benefits of Recommended Actions

A public awareness campaign may be viewed with apathy as just one of the many social
campaigns that people have seen in the past. The outcomes of the campaign may thus not go far
to address complex issues of stigma and discrimination of children with disabilities. This will lead
to another risk where programme implementers may see this as an approach that will only lead
to wasting meagre resources.
Nonetheless evidence from countries that have undertaken awareness campaigns on disability
has shown that this approach leads to remarkable results in addressing stigma. The Disability is
not inability campaign by UNICEF Montenegro resulted in huge increase in school attendance
of children with disabilities. In Turkmenistan, a unique approach to advocacy of disability using
puppet shows resulted in improved mainstreaming of disability in health, education and social
policy sectors. Hence if properly done, an awareness campaign will lead to better understanding
of disability and reduced stigma and discrimination.
7.3.3

Resources and Commitments Required

The budget and work plan for C4D section in Malawi for 2014 is already in place. The author
will lobby C4D and Social Policy sections to include a budget line for disability awareness
campaign in early 2015 before DHS survey is conducted. The actual amounts required are still
being worked out.

8.0 Conclusions and Lessons Learnt

8.1 Conclusions
This study has confirmed that theres a general lack of quality data on children with disability in
Malawi. The tools that have been used to collect data on disability had not conformed to current
thinking on disability which views disability as a social and human rights issue and not purely as a
medical condition. Adoption of new tools that take cognisance of this new thinking will go a long
way in addressing the challenges encountered in collecting disability data.
The annual school census is a good tool for collecting data on disability for children that are already
attending schools. However, it needs to be improved as a downstream tool that feeds data into the
EMIS. Enhancing the capacity of teachers to identify different types of disabilities will improve
the quality and completeness of data collected using school censuses.
The majority of children with disabilities do not attend school. Schools censuses will thus not
capture these group of children and hence other more inclusive tools need to be employed. The
general national census, which is done every 10 years, is too infrequent to be useful for children in
this group. Hence Household surveys should be strengthened to capture meaningful in-depth data
on all children and such data should be in a form that is internationally comparable.
In order to improve the quality of data on people with disability in general and specifically, children
with special education needs, it is imperative that national census and survey tools such as DHS
and IHS include a module on disability. Questions in such module should be standardized and as
recommended in this report, be based on WG child disability module. It should be noted that
14

surveys and other acts of data collection create an expectation in the population of children with
disabilities that something will be done to help them. It is therefore important that data collection
does not only result in improved availability of data for policy making but is also linked to provision
of services to children with disabilities. Such a linkage is likely to lead to improved cooperation
that will ensure that care givers and parents of children with disabilities continue to support future
information collection endeavours.
8.2 Leadership Lessons Learned

For my own leadership development, this project has broadened my perspective and
understanding of a key strategic area that is at the core of the organizations focus. Working in
this project, which is not within my area of specialization, has helped me to develop a number of
leadership competencies including formulating strategies and concepts, persuading and influencing
and relating and networking.
My ALP topic enabled me to look at current focus by UNICEF on equity in education. I explored
this area with assistance from key education and social policy stakeholders in UNICEF and
Government of Malawi. I believe I worked strategically to set and develop the strategies that I
used to achieve the outcomes of this project. In the implementation phase, I will further take the
opportunity to broaden my skills in formulating strategies and concepts.
Overall, I have had a unique opportunity to network and discuss disability issues with colleagues
in several UNICEF offices from Montenegro to New York, as well as experts in Government
ministries. At the onset of this project, I identified key players and decision makers in the area of
disability and inclusion. In my interactions with these key players, I was able to guide discussions
towards exploring the range of possibilities that can be pursued to address inclusion of children
with disabilities and thereby persuading and influencing key support for my ideas. I hope to
continue persuading and influencing experts in this field to work with me on the recommendations
that I have put across.

15

References
Bines, H. & Lei, P. (2011). Disability and education: the longest road to inclusion. International
Journal of Educational Development 31 (5), 419424.
Cappa, C. (2014). Strengthening statistics on children with disabilities: UNICEF's work and
planned activities. UNICEF, New York.
CDC Online. Retrieved on 25 April 2014 from
http://www.cdc.gov/nchs/washington_group/wg_objectives.htm
Chavuta, A., Itimu-Phiri, A.N., Chiwaya, S., Sikero, N. & Alindiamao, G. (2008), A Baseline Study
on Inclusive Education.
Chilemba, E. (2012), Promoting disability rights in Malawi. Retrieved on 22-Aug-2014 from
http://www.osisa.org/law/blog/promoting-disability-rights-malawi
Croft, A. (2011). Promoting Access to Education for Disabled Children in Low-Income countries:
Do We need to know How Many disabled children there are? International Journal of
Educational Development 33, 233243.
DFID (2000). Disability, Poverty and Development. DFID, London.
DFID (2010). Disability and education: Bridging the implementation gap. DFID, London.
Durkin M.S. (2001), Measurement of Childhood Disabilities in Population Studies. United Nations
Seminar on Measurement of Disability, 46 June, New York.
Eide, A.H. & Loeb, M.E. (2005). Data and Statistics on Disability in Developing Countries.
Disability Knowledge and Research Programme. Overseas Development Group, London.
EMIS (2013), Education Statistics 2012. Ministry of Education, Malawi
Filmer, D. (2005). Disability, Poverty, and Schooling in Developing Countries: Results from 11
Household Surveys. Washington, DC, World Bank.
Fujiura, G., Park, H. & Rutkowski-Kmitta, V. (2005). Disability statistics in the developing world:
a reflection on the meanings in our numbers. Journal of Applied Research in Intellectual
Disabilities 18 (4), 295304.
GOM (2010), Gender and Development Index, 2010. Government of Malawi.
Lawrence, j. (2004). The right to education for persons with Disabilities: Towards inclusion. World
Bank.
Loeb, M.E. & Eide, A.H.(2004); Living Conditions among People with Activity Limitations in
Malawi: A National Representative Study.
Mclaughlin, M.J. & Ruedel, K. (2005). Educating Children with disabilities: Who are the children
with disabilities? EQUIP2, Washington.
16

Metts, R., 2004. Disability and Development: Background paper prepared for the Disability and
Development Research Agenda Meeting, November 16. WorldBank, Washington, DC.
MoE (2009), Implementation Guidelines for the National Policy on Special Needs Education.
Ministry of Education, Malawi.
Mont, D. (2007). Measuring Disability Prevalence. SP Discussion Paper No. 0706. World Bank,
Washington, DC.
Mont, D. (2007a) Measuring health and disability. Lancet 369: 16581663.
Munthali, A.C. (2011). A situation Analysis of Persons with Disabilities in Malawi. Norwegian
Association of the Disabled (NAD).
NSO (2011). Third integrated household Survey 2010/11 Questionnaire. National Statistical
Office, Government of Malawi.
Robson, C. & Evans, P. (2003). Educating Children with Disabilities in Developing Countries: The
Role of Data Sets. OECD, Paris.
Shakespeare, T. & Watson, N. (2002. The social model of disability: an outdated ideology?
Research in Social Science and Disability, 2: 9-28.
Tongo M.D.C. (2007). Purposive sampling as a tool for informant selection. Ethnobotany
Research & Applications 5:147-158
UNESCO (2009), Towards Inclusive Education for Children with Disabilities: A Guideline.
UNESCO (2010) Reaching the marginalized. EFA Global Monitoring Report. Paris/Oxford:
UNESCO/Oxford University Press.
UNICEF (2013).The State of The Worlds Children 2013. Children With Disabilities.
UNICEF Malawi (2012). Country Programme Document, Malawi
UNICEF Malawi (2013), From Exclusion to Inclusion: Promoting the Rights of Children with
Disabilities in Malawi
UNICEF Turkmenistan (2012). Puppets to advocate for inclusion of children with disabilities.
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http://data.worldbank.org/country/malawi.

17

Annex A: Interview guide

Promoting Inclusion: Addressing Challenges of Availability of Data on Children with
Special Education Needs in Malawi.
Research Questions
1) identify the challenges that are encountered in collecting data on children with disabilities
2) explore the gaps in data on children with special education needs in Malawi
3) explore possible strategies and tools that can be employed to improve collection, storage and analysis of
data on children with special education needs

Introduction Key
Components:
Thank you
Your name
Purpose
Confidentiality
Duration
How interview
will be conducted
Opportunity for
questions
Signature of
consent

I want to thank you for taking the time to meet with me today.
My name is Simon Mwirigi and I would like to talk to you about your
experiences on availability of data on children with disabilities in General,
and children with special education needs in particular. Specifically, I am
researching on how we can promote inclusion of children with special
education needs by improving availability of Data on this special category
of children.
The interview should take less than an hour. I will be recording the session
because I dont want to miss any of your comments. Although I will be
taking some notes during the session, I cant possibly write fast enough to
get it all down. Because were on record, please be sure to speak up so that
we dont miss your comments.
All responses will be kept confidential. This means that your interview
responses will only be shared with LDP faculty and I will ensure that any
information I include in my report does not identify you as the
respondent. Remember, you dont have to talk about anything you dont
want to and you may end the interview at any time.
Are there any questions about what I have just explained?
Are you willing to participate in this interview?

__________________
Interviewee

__________________

18

__________
Date

Questions
No more than 15
open-ended
questions
Ask factual before
opinion
Use probes as
needed

1. What information is available about children with disability in Malawi?

-

Where is this information?

2. How would you describe the adequacy & sufficiency of current data on
disability in general and children with Special Education Needs (SEN)?
-

What gaps are there in the current data on children with SEN?

3. In your opinion, what is the importance of having sufficient and quality

data of Children with Special needs?
a Are there issues that can be addressed without that high level of
data on SEN?

4. In your opinion, what type of data is required in order to address the

challenges of access to schools for children with Special Education
Needs?
5. How is Data on disability in general and children with SEN in particular
collected currently?
6. What are the challenges encountered in collecting data and information
on children with disability and SEN?
7. What tools are now used to collect and analyze data on disability and
children with SEN?
8. How is the data and information on disability shared and disseminated?
9. What strategies and tools would you recommend be used to improve
data collection on children with disabilities?

Closing Key
Components:
Additional
comments
Next steps
Thank you

Is there anything more you would like to add?

Ill be analyzing the information you and others gave me and submitting a
draft report to the organization in two months. Ill be happy to send you
a copy to review at that time, if you are interested.
Thank you for your time.

19

Annex B: Key Informants

Name
Maki Kato
Koorosh Raffii
Nyson Chizani
Joshua Mkwehiwa
Medson Makwemba
Michael Banda
Peter Sedema
Lilian Nyazebe
Claudia Cappa
Marija Manojlovic

Organization
UNICEF Malawi
UNICEF Malawi
UNICEF Malawi
Ministry of Disability
National Statistical office
UNICEF Malawi
Ministry of Education
Ministry of Education
UNICEF New York
UNICEF Montenegro

Designation
Chief, Social Policy
Chief, Planning Monitoring and Evaluation
Monitoring and Evaluation Specialist
Senior Officer, Disability
Statistical Officer
Education Specialist
Chief Officer, Special Needs Education
Principal Officer, Special Needs Education
Statistics Specialist, Data & Analytics section
Social Policy and Equity Officer

Annex C: ICF Functional Model of Disability

20

Annex D: Summary of Transcribed Responses from Interviews

SUMMARY OF TRANSCRIBED RESPONSES FROM SEMI-STRUCRED INTERVIEWS
RESPONDED

P1

P2

P3

P4

P5

P6

P7

P8

P8 / P10

CATEGORY
(i) Schools do not keep statistics on children with
disability as they fear that keeping such statiscs is (i) Definition of disability that is relevant crossstigmatizing
culturally

Chall
enge
s

in da

ta Co
ll ecti

on

(ii) identification of children with disability/SEN (ii) Countries have used different methods and
challenges coz teachers are not knowlegeable on tools to collect data, so its not internationally
disability
comparable
(iii) Collecting data for children is more difficult
because this is done through third party. When
you inquire about children you go through parent,
(iii) potentioal identification systems such as Early but the parents will give you their opinion, so it is
Childcare Centres are weak so cannot identify challenging getting reliable information through
disability in children
parents
(iv) (what is considered mild) Mild disabilities
tend not to be reported, only reporting severe
(iv) There may be stigma accociated with giving
disbilites
certain disability information
(v) collecting data on disability in children is also
problematic beacues children are in constant
(v) bad classification of impairments
process of developmental change
(vi) Past Data collection tools used "offensive"
(vi) Poor data collection tools e.g. school census and stigmatizing terms. ".. They were asking, is
form not elaborate enough to capture full
there anybody in your household that is retarded,
information
crazy or handicapped, or crippled?"

(i) Stigma towards children with disability.

Parents are ".. Careful not to admit that their
child has disability, the child is usually hidden"

(i) Proper understanding of disability is important.

Within different circumstances, disability will have (i) Respondents may become reluctant to answer (i) Available data based on small scale studies,
different impact on people with disability
questions on disability
and cannot be generalized to entire population

(i) children with disabilities are stigmatized and

hence are not taken to school

(ii) Poor detection systems in school and health

institutions

(ii) Important to understand child disability from a

societal perspective and also from context
specific perviews
(ii) Difficulties in accessing some households

(ii) Parents hide away children with disabilities.

Sometimes theyu do this because they do not
want to expose the way they are not taking care (ii) Learning disability or intellectual disability is
of these children
not very well recognized or understood

(ii) Challenges in funding services especially

SEN, hence if services not provided then
importance of data is not seen

(iii) Parents choose not to invest in children with (iii) Piece meal data, that is not in one place
disabilites instead educate those without, hence presents challenges in colecting in one place, and
discriminate against children with disabilities
analysing
(iv) National registration system, that would have
(iv) Current tools such as Household surveys,
improved and simplified data collection, does not
DHS, are not capturing data on disabilities
exist in Malawi
(v) Disability module that had been embeded in (iv) currently registration of chuildren in districts
MICS (in other countries) has not be used in
is very manual and done on book registers, by
Malawi because it had many shortcomings
hand

(iii) Monitoring and followup of information on

SNE learners not done as required
(iv) when SNE learners go to school and they
are not assisted ie. Schools do not meet their
needs, then these children will drop out
(v) Parents attitudes towards children with
disabilities are discriminatory against these
children

(iii) Questionaires asking parents directly if their

child has disability - scary to parents and they
would say no they do not have children with
disability

(iii) To get meaningful comprehensive data, we

need to go beyond just physical disability.
Challenges in identifying non-physical disabilities
impact on data collection as well as programming (iii) cost of surveys may limit doing frequent data (iii) Community attitudes also negative towards
for services
collection and/or standalone disability surveys
sending children with disabilities to school
(iv) Functional diability and how the child
interacts (or not) with the environment aroiund
him/her
(iv) discrimination against children with disabilities
(v) Financial constraints limits extend to which
(v) Stigmatization due to lack of access to
ministry can do data collection for children with
services
disability
(vi) The way we collect data and the perceptions
of data collectors affects the accuracy/relieability
of data

(vi) Country does not have enough resources to

(vi) Disability issues are not a priority in Malawi's address the problems of disbility - so they are
development framework and strategies
not inclined to do data collection

(vii) Most schools are not disability friendly so do

not attract learners with disability
(viii) schools are unable to accommodate
children with severe disabilities because they
dont know how to handle them

(i) Varying prevalence figures when different

survey instruments were used. Census came up
(i) Schools do not keep statistics on children with (i) Several countries have data on disability, but it Montenegro has big problem of discrepancies in with prevalence of 2.9% and welfare monitoring
disability as they fear that keeping such statiscs is was collected using a medical concept of
data on disability for children, varying from 1.1% came up with high prevalence of about 30%.
stigmatizing
disability, hence may not be very accurate
Census 2011 to 12.5% from MICS 2005
Which is correct?
(i) macro data on types of disabilities
(ii) Data for Malawi is widely varied (2.9%,
(ii) EMIS does not collect data on out of school
4.2% to 17%) , and appears to depend on how
kids, hence it misses children out of school who (ii) disability data Disagregated by gender can be
(ii) Data available is not reliable
the tool was formulated
may have disabilities
provided by NSO

ildre
n
Gaps
fo

r Ch

(iii) EMIS does not have good data on SNE and (iii) Available data shows low prevalence.
Disability
Language used in tools is very outdated

abilit
y and

(v) Data on children out of school is largely

missing

(iii) Welfare monitoring survey was done recently (iii) District prevalence of disability can be
and included collection of data on disability
provided, but this is upon request

(iv) Data is not properly disseminated or used

(iv) NSO disability data is not accessible online

(v) Prevalence of disability is about 2.9% as of
Population and Housing census of 2008
(vi) Quality of data viewed as not too good, but
this can be improved by doing standalone
disability surveys

on dis

(v) overall the quality of the data is very poor

Avail
able

data

(vi) shows lower than expected disability

prevalence rates

Strat

egies
a

nd T
o

ols fo

r Da

ta Co

lle cti
o

(i) Avoid use of derogatory, stigmatizing terms

e.g. dumb

(i) " new ways of colecting data that will

inquire both about individual condition but also
about the environment where the person lives."

(i) Awareness compaign in Montenegro :

"Disability is not inability" raised the number of
children with disability in schools 5 times
(ii) WG Questionaire dows not ask parents
about disabilyt directly, rather asks " .. Does
your child, compared to children of the same
(ii) Collect data on whether or not the person has age, have more or less difficulty in hearing,
access to assistive devices
seeing, walking "

(i) Use of internationally accepted standardized

(i) Children are hidden away, so we need to do a tools for collection of disability data will ensure
campaign to address stigmatization
comparability and relieability

(ii) When collecting data through various survey

(ii) strengthen school census form to capture
tools, we have challenges in the understanding of
elaborate data on SEN
data collectors
(iii) Made attempts to include disability data
collection in existing survey tools, such as attempt
(iii) Improvement of knowledge of teachers on (ii) Data for Malawi is widely varied, and
(iii) WG questionaire can be used as a module in to include disability module in MICS but this
disability (to be able to identify disability/SEN
appears to depend on how the tool was
MICS, DHS or census, or can be used to
resulted in problems so the approach has been
and fill census form)
formulated
conduct independent surveys
dropped
(iv) inclusion of disability data collection DHS
(iv) MICS module on disability did not work
(iv) WG module was not ready for inclusion in
needs to be advocated, especially since Malawi
(v) Use Census forms to update EMIS
very well, so UNICEF needed to change
MICS5. Tool expected to be ready in 2014
will do DHS in 2015 or 2016
(v) We can improve dissemination and sharing of
(v) WG tool on disability addressed the
(v) use of second stage assessment when primary disability data through workshops, conferences
(vi) Inclusion of WG disability module in Welfare challenges by asking about activity limitations and survey identifies suspected cases of disability.
and general advertisements in national print
Monitoring Survey
not directly about disability
Second stage to be doe by medical professionals media
(vii) Awareness creation, sensitization and
advocacy

(vi) Need clear classification of disability in order

to do correct placement of learners with special
needs

(vii) Need to understand the complex nature of

disability in order to collect quality, accurate data

with

s pe cia

l Edu

cati o
n

Nee d
s

(vii) Stigmatization may lead to parents hidding (vii) Narrow medical definitions yield lower
children with disabilities
estimates
(viii) Data collection for children is done thtough
their parents, and parents may not know all the
problems of the child e.g. dyslexia

(ii) Community attitudes lead to parents locking

children with disabilities away in their homes
("hiding")

(i) Knowledge among the people in genral about

disability is very limited
(i) Challenges on funding of data collection

(i) Some general information on living conditions,

Education and vocational training for people with (i) There is little data on disability that is currently
disability is available
available
(ii) Data describing disability in terms of
(ii) some information on specific disability types is demographics, age, gender, education
available
background is required
(iii) Some disability data available for malawi but
this data collected only for specific purposes and (ii) Data from schools such as learners with
may thus not be generalized
Special needs is available
(iii) Even for data on school going children with
(iv) Available data does not talk to each other, disabilities, Ministry of education does not have
i.e. it is not comparable
systematic data, only piecemeal data
(v) can use welfare monitoring surveys to include
disability questions
(iv) Available data on disability is not accurate
(vii) Sharing or dissemination o data has been a
challenge; so we don't always know what the
(vi) Out of school children with disability not
various studies have come up with
captured in school data sets
(vii) available data on children with disabilities
covers children in age range 6 to 19 years
(school going) leaving out 0 - 5 yeaars

(i) restrucure theeducation system to be more

(i) Available data on children with disabilities is
responsive to the needs of children with disability collected through school system

(ii) We should address some of the challenges of

disability even with the little information available;
(ii) Possible to include a disability module in DHS not compulsory that we must have a lot of good (ii) Specific project data exists, this data was
so long as the module is not to big
data to begin to address pressing challenges
collected to address very specific needs

(iii) Need additional funding to expand DHS and (iii) Mainstreaming of disability data collection in
census to include additional disaility questions
all research and data collection activities
(iv) Use of technologies to help gather data and
(iv) MICS and other HH survey tools can be
analyse data, eg. Existing information
used with additional disability questions
management systems

(vi) Functioning and disability occur in context

(i) Data availability on specifically on children

with disability is very limited. Big data gap in
Malawi. Avauilable data is not disaggregated
(ii) 2008 National census provided some
information on prevalence of disability in general
(iii) Current data masks the true magnitude of the
problem of disability in the country. This
masking has led to low prioritization of issues of
disability
(iv) Available data not categorized - has lumped
together several typoes of disabilities into
"others" category
(v) Available numbers on disability may be
undereastimating the prebvalence rate in Malawi.
Relieability and accuracy is doubtful

(ii) Type of learning difficulties by schools

(iii) Resources allocated for Special Education

Needs
(iv) How learners with SEN are placed in
schools
(v) Gaps in out of school children who have
disabilities

(vi) important to have more precise data in order (vi) Gaps in data on number of teachers trained
to prioritize issues of disabilities
for SNE
(v) Need more solid data in order to advbocate (vii) schools where SEN children are
better for chuildren with disabilities
attendingare known
(viii) only about 1% of teachers in the country
have been trained to handle special needs
(vi) Limited utization of available data
education

(i) Sensitization of copmmunities to address

stuigma and general understanding of disability

(i) Need to sensitize parents and communities to

reduce discrimination and stigma against children
with disabilities

(ii) Schools that turn SNE learners need to be

(ii) Do large scale campaign through the ministry prevailed upon to accept inclusion, thereby
of disabity to change mindset
bringing out of school children to the mainstream

(iii) data collection tools that will work well

(iii) Service provision for children with disability
should be simple to use, easy to include in
especially intellectual disability needs to be
household surveys, should not stigmatize people improved
(iv) Need service providion for people with
(iv) nationwide surveys should include questions disabiklities in order to improve responsiveness
on disability
during data collection or registration
(v) Introducing new criteria in existing
programmes such as Social cash Transfer to
(v) strenghten school systenm as a data collection improve targeting of households with children
point
with disabilities
(vi)Can use communities to coloect data on out
(vi) Have some awareness messages to teach
of school children with disability, through bottomcommunities about disability
up approach
(vii) Inclusion of disability module in DHS is
critical to improve data on disability

21

(i) Total Number of children with special

education needs that are in schools is on record

(iii) Use of national census to collect disability

data, but with specialists in disability being
involved in the census
(iv) use of role models to collect data on out of
school children with special education needs