Promoting Inclusion Addressing Challenges of Availability of Data

7/21/2019 Promoting Inclusion Addressing Challenges of Availability of Data

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UNICEF LEADERSHIP DEVELOPMENT PROGRAMME

ACTION LEARNING PROJECT



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



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



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



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



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.



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



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



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.).



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



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



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



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



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.



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



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



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



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



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



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



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



References

Bines, H. & Lei, P. (2011). Disability and education: the longest road to inclusion. International Journal of Educational Development 31 (5), 419 – 424.

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, 233 – 243.

DFID (2000). Disability, Poverty and Development. DFID, London.

DFID (2010). Disability and education: Bridging the implementation gap. DFID, London.





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: 1658 – 1663.

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



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.



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



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



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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Documents

Promoting Inclusion Addressing Challenges of Availability of Data