Promoting Inclusion Addressing Challenges of Availability of Data
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UNICEF LEADERSHIP DEVELOPMENT PROGRAMME
ACTION LEARNING PROJECT
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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
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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
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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 SurveyMICS Multiple Indicator Cluster Survey
MoE Ministry of Education
NSO National Statistical Office
PME Planning Monitoring and Evaluation
SNE S i l N d Ed ti
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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 focusedextensively 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.
UNICEF’s States of the World’s Children report of 2013 points out the extent to which children
with disabilities are excluded and marginalized from resources and social services. This exclusionoften 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 M l i h id ifi d h d f h i d hild i h di bili i
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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 organization’s focus. W orking in this project has helped me to develop a number ofleadership competencies including formulating strategies and concepts, persuading and influencing
and relating and networking.
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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 World’s 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
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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 world’s 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 Malawi’s 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
f i d h d i l d d i ” (L b d
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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 provisionof 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.).
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3.0
Objectives of the Project
Children with disabilities make up one of the most socially excluded groups in our society. Robsonand 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 W orld’s 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 andstrengthen 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
E l ibl i h b l d i il bili f d hild
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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) arguesthat 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
li i ’ i i i hil h i l d l li di bili i i f h
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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
li i i f il bl
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4.3 Tools for Data Collection and Analysis
According to Croft (2013), the most comprehensive effort to measure disability from the socialmodel perspective is the World Health Organization’s (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.
UNICEF’s 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
i f f h l li i h i l l f l i i d
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5.0
Results and Discussions from Data Collection
5.1
MethodologyIn 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.
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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 theimpairment 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
i f di bili i M h l k ffi i k l d i l id if id
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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 ,
h fi l f hi did i l d d di bili
Figure 1: How Survey Tool Questions affected the reported Prevalence Rate of Disability in Malawi
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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
i Th h d d k h i h A l i d S i i
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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 Dataand 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.
Th b fi f i h f i h h i k T i h d l i l i ill i
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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 ofdisability 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 maydiscourage 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
d b l
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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
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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 provisionof 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 organization’s 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 exploredthis 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
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Tongo M.D.C. (2007). Purposive sampling as a tool for informant selection. Ethnobotany
Research & Applications 5:147-158
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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
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 don’t want to miss any of your comments. Although I will be
taking some notes during the session, I can’t possibly write fast enough to
get it all down. Because we’re on record, please be sure to speak up so that
we don’t miss your comments.
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Questions
• No more than 15
open-endedquestions
• Ask factual before
opinion
• Use probes asneeded
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 particularcollected 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
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Annex B: Key Informants
Name Organization Designation
Maki Kato UNICEF Malawi Chief, Social Policy
Koorosh Raffii UNICEF Malawi Chief, Planning Monitoring and Evaluation
Nyson Chizani UNICEF Malawi Monitoring and Evaluation Specialist
Joshua Mkwehiwa Ministry of Disability Senior Officer, Disability
Medson Makwemba National Statistical office Statistical Officer
Michael Banda UNICEF Malawi Education Specialist
Peter Sedema Ministry of Education Chief Officer, Special Needs Education
Lilian Nyazebe Ministry of Education Principal Officer, Special Needs Education
Claudia Cappa UNICEF New York Statistics Specialist, Data & Analytics section
Marija Manojlovic UNICEF Montenegro Social Policy and Equity Officer
Annex C: ICF Functional Model of Disability
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21
Annex D: Summary of Transcribed Responses from InterviewsSUMMARY OFTRANSCRIB ED RESPONSES FROM SEMI-STRUCRED INTERVIEWS
RESPONDED P1 P2 P3 P4 P5 P6 P7 P8 P8 / P10
CATEGORY
(i) Schools do not keep statistics on childrenwith
disabilityas they fear that keepingsuchstatiscs is
stigmatizing
(i) Definitionof disabilitythat is relevant cross-
culturally
(i) Stigma towards children withd isability.
Parents are ".. Careful not to admit that their
child has disability, the child is usuallyhidden"
(i) Proper understandingof disabilityis important.
Withind ifferent circumstances, disability willhave
different impact on people with disability
(i) Respondents maybecome reluctant to answer
questions on disability
(i) Available data based on smallscale studies,
and cannot be generalized to entire population
(i) children withd isabilities are stigmatized and
hence are not takento school
(i) Knowledge amongthe peop le ingenralabout
d is ab il ity is ver y limi te d ( i) Cha ll enge s onfundingof da ta c ol le ct ion
(ii) identificationofchildrenwithdisability/SEN
challenges coz teachers are not knowlegeable on
disability
(ii) Countries have used different methods and
tools to collect data, so its not internationally
comparable
(ii) Poor detectionsystems inschooland health
institutions
(ii) Important to understand child disability froma
societalperspective and also fromcontext
s pe cific p er vie ws ( ii ) D iffi cu lt ie s i n ac ce ss in g so me h ou se ho ld s
(ii) Communityattitudes lead to parents locking
childrenwithdisabilities away intheir homes
("hiding")
(ii) Parents hide awaychildrenwithdisabilities.
Sometimes theyudo this because theyd o not
want to expose the waytheyare not takingcare
ofthese children
(ii) Learningdisabilityor intellectualdisabilityis
not verywellrecognized or understood
(ii) Challenges infunding services especially
SEN, hence ifservices not provided then
importance of data is not seen
(iii) potentioalidentificationsystems suchas Early
Childcare Centres are weak so cannot identify
disabilityinchildren
(iii) Collectingda ta for childrenis more difficult
because this is done throughthird party. When
youinquire about childrenyou go throughparent,
but the parents willgive youtheir opinion, so it is
challengingge tting reliable information through
parents
(iii) Questionaires asking parents directlyiftheir
child has disability- scary to parents and they
would sayno they do not have childrenwith
disability
(iii) To get meaningfulcomprehensive dat a, we
need to go beyond just physicaldisability.
Challenges inide ntifyingnon- physical disabilities
impact ondata collectionas wellas programming
for services
(iii) cost ofsurveys maylimit doingfrequent data
collectionand/or standalone disabilitysurveys
(iii) Community attitudes also negative towards
sendingchildrenwithdisabilities to school
(iii) Parents choose not to invest inchildrenwith
disabilites instead educate those without, hence
discriminate against children withd isabilities
(iii) Piece mealdata, that is not inone place
presents challenges incolectingin one place, and
analysing
(iii) Monitoring and followup ofinformation on
SNElearners not done as required
(iv) (what is considered mild) Mild disabilities
tend not to be reported, onlyreportingsevere
disbilites
(iv) There mayb e stigma accociate d withgiving
certaindisabilityinformation
(iv) Functionaldiabilityand how the child
interacts (or not) withthe environment aroiund
him/her (iv) discrimination against children with disabilities
(iv) Current tools suchas Household surveys,
DHS, are not capturingdata ondisabilities
(iv) Nationalregistrationsystem, that would have
improved and simplified data collection, does not
exist inMalawi
(iv) whenSNE learners go to schooland they
are not assisted ie. Schools do not meet their
needs, thenthese childrenwilldrop out
(v) bad classificationofimpairments
(v) collectingdata ondisabilityinchildrenis also
problematic beacues childrenare inconstant
process ofdevelopmentalchange
(v) Stigmatizationdue to lack of access to
services
(v) Financialco nstraints limits extend to which
ministrycan do data collectionfor childrenwith
disability
(v) Disabilitymodule that had beenembeded in
MICS (inother countries) has not be used in
Malawibecause it had manyshortcomings
(iv) currentlyregistrationofchuildrenindistricts
is verymanualand done onbook registers, by
hand
(v) Parents attitudes towards childrenwith
disabilities are discriminatory against these
children
(vi) Poor data collectiontools e.g. schoolcensus
formnot elaborate enoughto capture full
information
(vi) Past Data collection tools used "offensive"
and stigmatizingterms. ".. They were asking, is
there anybodyin your household that is retarded,
crazyor handicapped, or crippled?"
(vi) The waywe collect data and the perceptions
ofd ata collectors affects the accuracy/re lieability
ofdata
(vi) Disabilityissues are not a priorityinMalawi's
development framework and strategies
(vi) Countrydoes not have enoughresources to
address the problems ofdisbility- so theyare
not inclined to do data collection
(vi) Need clear classificationofdisabilityinorder
to do correct placement of learners withspecial
needs
(vii) Stigmatization maylea d to parents hidding
childrenwithd isabilities
(vii) Narrow medical definitions yield lower
estimates
(vii) Need to understand the complexnature of
disabilityin order to co llect quality, accurate data
(vii) Most schools are not disabilityfriendlyso do
not attract learners withdisability
(viii) Data collectionfor childrenis done thtough
their parents, and parents maynot know allthe
problems ofthe child e.g. dyslexia
(viii) schools are unable to accommodate
childrenwith severe disabilities because they
don’t knowhow to handle them
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(i) Schools do not keep statistics on childrenwith
disabilityas they fear that keepingsuchstatiscs is
stigmatizing
(i) Severalcountries have data on disability, but it
was collected usinga medicalconcept of
disability, hence maynot be very accurate
Montenegro has bigproblemof discrepancies in
data on disabilityfor children, varyingfrom1.1%
Census 2011 to 12.5% fromMICS 2005
(i) Varying prevalence figures when different
survey instruments were used. Census came up
withprevalence of2.9% and welfare monitoring
came up withhighprevalence ofabout 30%.
Which is correct? (i) macro data on types of disabilities
(i) Some generalinformationonlivingconditions,
Educationand vocationaltrainingfor people with
disability is available
(i) There is little data on disability that is currently
available
(i) Data availabilityon specificallyon children
withdisabilityis verylimited. Bigdata gap in
Malawi. Avauilable data is not disaggregated
(i) TotalNumber ofchildrenwithspecial
educationneeds that are inschools is onrecord
(ii) Data available is not reliable
(ii) Data for Malawiis widelyvaried (2.9%,
4.2% to 17%) , and appears to depend on how
the tool was formulated
(ii) EMIS does not collect data on out ofschool
kids, hence it misses childrenout of schoolwho
mayhave disabilities
(ii) disabilitydata Disagregated bygender can be
provided byNSO
(ii) some information on specific disabilitytype s is
available
(ii) Data describingdisabilityin terms of
demographics, age, gender, education
background is required
(ii) 2008 Nationalcensus provided some
informationonp revalence of disabilityin general (ii) Type of learningdifficulties byschools
(iii) EMIS does not have good data on SNEand
Disability
(iii) Available data shows lowprevale nce.
Language used in tools is veryoutdated
(iii) Welfare monitoringsurvey was done recently
and included collectionof data on disability
(iii) District prevalence of disabilitycan be
provided, but this is uponrequest
(iii) Some disability data available for malawibut
this data collected only for specific purposes and
maythus not b e generalized
(ii) Data fromscho ols sucha s learners with
Specialneeds is available
(iii) Current data masks the true magnitude oft he
problemofdisabilityinthe country. This
maskinghas led to low prioritizationofissues of
disability
(iii) Resources allocated for Special Education
Needs
(v) Data on children out of school is largely
missing (iv) Data is not properly disseminated or used (iv) NSO disability data is not accessible online
(iv) Available data does not talk to each other,
i.e. it is not comparable
(iii) Evenfor data on schoolgoingchildrenwith
disabilities, Ministryof educationdoes not have
systematic data, only piecemealdata
(iv) Available data not categorized - has lumped
together severaltypoes of disabilities into
"others"category
(iv) Howlearners withSEN are placed in
schools
(v) overallthe qualityof the data is verypoor
(v) Prevalence of disabilityis about 2.9% as of
Populationand Housingcensus of2 008
(v) canuse welfare monitoringsurve ys to include
d is ab ilit y qu es tio ns ( iv ) Av aila ble da ta on d is ab ilit y is no t a cc ur at e
(v) Available numbers on disabilitymay be
undereastimatingthe prebvalence rate in Malawi.
Relieabilityand accuracy is doubtful
(v) Gaps inout of schoolchildrenwho have
disabilities
(vi) shows lower thane xpected disability
prevalence rates
(vi) Qualityof data viewed as not too good, but
this canbe improved bydoingstandalone
disabilitysurveys
(vii) Sharingor disseminationo data has been a
challenge; so we don't always knowwhat the
various studies have come up with
(vi) Out ofschoolchildrenwithdisabilitynot
captured inschooldata sets
(vi) important to have more precise data in order
to prioritize issues ofdisabilities
(vi) Gaps indata on number ofteachers trained
for SNE
(vii) available data onchildrenwithdisabilities
covers childrenin age range 6 to 19 years
(schoolgoing) leavingout 0 - 5 yeaars
(v) Need more solid data inorder to advbocate
better for chuildrenwith disabilities
(vii) schools where SEN childrenare
attendingare known
(vi) Limited utizationof available data
(viii) onlyabout 1% ofteachers inthe country
have beentrained to handle specialneeds
education
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(i) Avoid use ofderogatory, stigmatizingterms
e.g. dumb
(i) "… new ways ofcolectingdata that will
inquire both about individualconditionbut also
about the environment where the person lives."
(i) Awareness compaignin Montenegro :
"Disabilityis not inability"raised the number of
childrenwithdisabilityin schools 5 times
(i) Childrenare hidden away, so we need to do a
campaignto address stigmatization
(i) Use ofinternationallyaccepted standardized
tools for collectionofdisabilitydata willensure
comparability and relieability
(i) restrucure theeducationsystemto be more
responsive to the needs ofchildrenwithdisability
(i) Available data on childrenwith disabilities is
collected throughschoolsystem
(i) Sensitizationof copmmunities to address
stuigma and generalunderstandingof disability
(i) Need to sensitize parents and communities to
reduce discrimination and stigma against children
withd isabilities
(ii) strengthenschoolcensus formto capture
elaborate data onSEN
(ii) Collect data on whether or not the personhas
access to assistive devices
(ii) WGQuestionaire dows not ask parents
about disabilyt directly, rather asks ".. Does
your child, compared to childrenofthe same
age, have more or less difficulty in… hearing,
seeing, walking…"
(ii) Whencollectingdata through various survey
tools, we have challenges inthe understandingof
data collectors
(ii) Possible to include a disabilitymodule inDHS
so longas the module is not to big
(ii) We should address some of the challenges of
disabilityeven withthe little informationavailable;
not compulsorythat we must have a lot of good
data to b eginto address pressingchallenges
(ii) Specific project data exists, this data was
collected to address veryspecific needs
(ii) Do large scale campaignthro ughthe ministry
ofdisabityto change mindset
(ii) Schools that turnSNE learners need to be
prevailed uponto accept inclusion, thereby
bringingout of schoolchildrento the mainstream
(iii) Improvement ofknowledge of teachers ondisability(to be able to identifydisability/SEN
and fillcensus form)
(ii) Data for Malawiis widelyvaried , andappears to depend onhow the toolwas
formulated
(iii) WGquestionaire canbe used as a module inMICS, DHS or census, or canbe used to
conduct independent surveys
(iii) Made attempts to include disabilitydata
collectionin existingsurveytools, such as attempt
to include disabilitymodule in MICS but thisresulted inproblems so the approachhas been
dropped
(iii) Need additionalfundingto expand DHS and
census to include additionaldisailityquestions
(iii) Mainstreamingofd isabilitydata collectionin
allresearchand data collectionactivities
(iii) data collectiontools that willwork wellshould be simple to use, easyto include in
household surveys, should not stigmatize people
(iii) Service provisionfor childrenwith disabilityespeciallyintellectualdisabilityneeds to be
improved
(iii) Use ofnationa lc ensus to collect disabilitydata, but with specialists ind isabilitybeing
involved in the census
(v) Use Census forms to update EMIS
(iv) MICS module ondisabilitydid not work
verywell, so UNICEF needed to change
(iv) WGmodule was not ready for inclusionin
MICS5. Toolexpected to be readyin 2014
(iv) inclusiono fdisabilitydata collectionDHS
needs to be advocated, especiallysince Malawi
willdo DHS in2015 or 2016
(iv) MICS and other HHsurveytools can be
used withadditionaldisabilityquestions
(iv) Use oftechnologies to help gather data and
analyse data, eg. Existing information
management systems
(iv) nationwide surveys should include questions
ondisability
(iv) Need service providionfor people with
disabiklities in order to improve responsiveness
duringdata collectionor registration
(iv) use ofrole models to collect data on out of
schoolchildrenwithspecialeducationneeds
(vi) Inclusionof WGdisabilitymodule inWelfare
MonitoringSurvey
(v) WGtoolon disabilityaddressed the
challenges by askingabout activitylimitations and
not directlyabout disability
(v) use of second stage assessment whenprimary
surveyidentifies suspected cases ofdisability.
Second stage to be doe bymedicalprofessionals
(v) We can improve disseminationand sharingof
disabilitydata throughworkshops, conferences
and general advertisements in nationalprint
media
(v) strenghtenschool systenmas a data collection
point
(v) Introducingnewcriteria in existing
programmes suchas Socialcash Transfer to
improve targetingofhouseholds with children
withd isabilities
(vii) Awareness creation, sensitization and
advocacy (vi) Functioning and disability occur in context
(vi) Have some awareness messages to teach
communities about disability
(vi)Canuse communities to coloect data on out
ofschool childrenwithd isability, throughbottom-
up approach
(vii) Inclusionof disabilitymodule in DHS is
criticalto improve data on disability
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