Inclusion: theory and practice

From Exclusion to Inclusion

A case of children with mental retardation in Kokebe Tsebah Primary School in Addis Ababa, Ethiopia

By
Gilenesh Haile
Dr. Tibebu Bogale

Save the Children Sweden
Eastern and Central Africa Office, Ethiopia

October 1999

Preface

Save the Children Sweden, which is now the official name for Rädda Barnen, has worked in Ethiopia for 35 years. The work focus has changed over time from care of poor Ethiopian children in general to rights based work targeting the most vulnerable groups of children in the whole region. They are children affected by war and displacement, street and working children and other categories who are denied their rights and often exploited and abused. Through our local partners we strive to advocate for their access to protection and services such as education. One group that is particularly ostracized is children with disabilities. Even more so if they are mentally impaired.

In our work to advocate for the inclusion of all children in societal life we have had the chance to meet the staff of Kokebe School, the children and the parents. They have shown great willingness to "pull down the walls" between students. Literally in fact!

In this paper we wish to record and share our experience of integrating a group of disabled children into normal schooling.

Thank you all who contributed to the work and this study.

Addis Ababa, October 1999

Per Tamm
Representative

Acknowledgement

This research would not have been possible without the co-operation of various people and organizations. We take this opportunity to thank Rädda. Barnen for the financial support and the District 5 Education Bureau for accepting the proposal for the pilot inclusive education program.

We are particularly grateful to Mr. Per Tamm, Regional Representative of Eastern and Central Africa Office of Rädcla Barnen for his keen interest in the program and unreserved support which was the driving force to finalize the study. Thank you Per Tamm for your positive thinking.

Ato Demisie Zerihun the Director of Kokebe Tsebah Primary School also deserves our heart felt gratitude.

Last but not least we thank members of the team of pilot inclusive program and the teachers and students of Kokebe Tsebah Primary School for being brave enough to be part of this novice program.

Acronyms

1. Introduction

1.1 Background

According to the WHO estimate there are about 3 million children with disabilities (CwDs) in Ethiopia. However, only a little over 2300 of these children have access to some form of educational service in 7 special boarding schools, 8 special day schools and 42 special classes (EMIS, 1997). As indicated in Table 1, these services are organized in the traditional methods of welfare conceptions, segregated settings, and protective environments. An overwhelming majority of these service settings were either fully supported by or partially dependent on religious groups, NGOs and foundations until very recently.

Children with hearing impediments form the highest group that benefit from the available services (approx. 50%), visually impaired children being the second highest (approx. 46%) .and children with mental retardation being the least served group. (Tibebu, 1995).

Table 1: Types of Services and Number of CwDs Having Access to Services in Ethiopia (1996/97)

Source: Educational Management Information Systems (EMIS). Ministry of Education, 1997.

Government involvement in special education has until recently been non existent and hence children with disabilities were not considered as children that are entitled to formal schooling as any other child. Thus, the education of children with disabilities was not included in the educational planning and budget allocation of the Ministry of Education until very recently, The need to under take a nationwide survey on CwDs was thought of for the first time, in Ethiopia, in 1983, by the Children, Youth Affairs Organization (CYAD, 1983). The survey was undertaken by CYAD and it focused on variables such as type and extent of the problem, cause, prevention, attitude, and availability of services. The survey created the basis for a detailed policy recommendation on how the needs and problems of CwDs are to be addressed. One of the recommendations was the need for special assistance and training to promote the integration of this group of children (CYAD, 1983, P).

The same year, an awareness raising workshop was organized by CYAD to disseminate the information gathered in the survey and to plan for the future. Representatives from the Ministries of health, education, labor and social affairs participated in the workshop. During the workshop, a ten year plan of action was prepared by the participants. Responsibilities were divided among the ministries. The ministry of education had in their plan of action to establish 30 special units throughout the country and one boarding school in each province within 5 years (i.e., until 1988) to address the special needs of CwDs. The training of experts in special education was another element in the same plan of action of the ministry of education. However, most of the activities in the plan of action were not carried out as planed. As presented in Table 1 the number of special schools has increased fairly well in the years after the first conference. However, the service provision still indicates a bias towards a few disability groups. For example, there are very few government / community supported programs for children with mental retardation. Most of the existing programs are either pilot programs or centers established and run by charities. The pilot programs as their name indicates are temporary which might not function after their lifetime expires.

Nonetheless, one cannot underestimate or downplay the changes of policies and activities being done by the government, NGOs and even the community. Parents have come together and established an association to advocate for the rights of their children, people with disabilities now have strong associations and the activities of the government are encouraging, although they are far below than what is expected. The new policy of the ministry of education regarding children with disabilities and their access to education states that education shall be provided to children with disabilities as the resource of the country permits. The policy does not provide a clear plan of action as to how this will be achieved. It lacks commitment of the government, the local authorities and the community for that section of the population that needs more support and recognition from society.

1.2 Forms of Education for Children with Disability

The right of every child to an equal education is proclaimed in the universal declaration of human rights and forcefully reaffirmed by the world declaration on education for all. These declarations further assure that every person with a disability has a right to express his/her wishes with regard to his/her education. Hence all signatory countries have the obligation to provide an appropriate education by taking the interests of all children into consideration.

Studies in other countries have proven that children develop better physically, psychologically, and socially if they learn together with other children. Similarly families prefer it when all children are accepted within the same school and programs (Radda Barnen, 1996, p. 13). Thus, schools have to meet the various needs of all children. The fact that a school does not meet the needs of a child with disability is not a problem created by the child. It is the school that was unable to meet the needs and thus the schools have to work hard to meet the needs of all children. This practice of meeting the needs of all children in the same school is known as inclusive education. The basic problems of persons with disabilities cannot be solved by moving these people away from where they live. Negative attitudes, prejudice and discriminating behavior will continue unless communities open their doors to their members with disabilities and give them the rights and opportunities which they deserve and have been deprived of for so long.

Inclusive education recognizes and responds to the diversity of children's needs and abilities including differences in their ways and places of learning. It does so by using individualized teaching methods, adopted curricula, as well as tailor made teaching aids and materials. Education is more effective for the child's academic development and development of skills when it takes place in a regular class, in the student's nearest. normal school. Separation from the normal class environment occurs (whether fully or partially) only where there is evidence that education in a normal class, accompanied by supplementary support and services fails to meet the student's educational, emotional and social needs.

Inclusive education works on the premise that the school is better for all when it includes all children in a community and that teachers become better teachers when they have the responsibility for all children. By assuming this responsibility, teachers become more active, innovative and creative, and learn to see the needs of the children (ibid).

2. Objectives of The Study

• To develop a workable inclusive education program for children with mental retardation (CwMR) in Ethiopia.
• To share experiences on lessons learnt.
• To promote the rights of children with special needs.

2.1 Rationale for the Study

A special class program for CwMR has been functional for the last 9 years. The number of children included in the program during these years has been very small compared to those in need. Preliminary assessment also indicated that the skills the children gained compared to the number of years they have been in the school were very limited. Moreover, due to the secluded location of the special classes, the children had little contact with regular students in the school compound. This has contributed to the lack of social skills, dependency, and to stigma toward CwMR. Thus, a pilot inclusive education program was initiated to provide education to an increased number of children with mental retardation, attain improved social skills and to decrease the stress and anxiety on families.

Furthermore, the pilot program is expected to encourage other schools and the government to initiate similar programs for children with disability in general and children with mental retardation in particular.

3. Method of the Study

The scope of the study was limited to one group of children with mental retardation. Subjects of the study were purposefully selected based on their level of involvement in the pilot program. A total of 601 subjects were included in the study. Of these, 90 were teachers, 480 students and 31 parents. The study was divided into two phases ? preinclusion phase and inclusion program phase.

The pre?inclusion phase included collection of data on attitudes towards CwMR and towards their inclusion into the normal schooling. Different programs were then devised for different groups to bring awareness about the problems of CwMR and about the principles of inclusion and in order to get full cooperation from school personnel, regular students and parents. Discussions were held between researchers, special education teachers, director and vice director of the school, the District Education Bureau Head, experts and parents of CwMR. All people involved in these discussions agreed to participate in the study and give all support to the inclusion program. Different kinds of awareness raising and training programs were developed. Parents, Education Bureau personnel, teachers and children participated in a one day awareness raising seminar. The contents of the awareness raising program included causes of mental retardation, inclusion and child rights. A more in depth one month training was given to 16 volunteer teachers on methods of teaching CwMR. In addition two experience exchange visits to other schools were organized for teachers involved in the pilot program, representatives of the District Educational Bureau and parents.

The inclusion phase involved implementation procedures. Teachers and researchers agreed to begin the inclusion program in grade 4. Two sections where CwMR were to be included were selected randomly. All children were to be given lessons in music, arts, agriculture, sports and home economics. All necessary additional materials for the inclusion program were provided by Swedish Save the Children. A team comprising researchers, the director, representatives of teachers, parents and education bureau was formed. The team agreed to make weekly observations in order to discuss problems and provide technical support.

Two types of instruments were designed and deployed during the process of data collection both at pre and inclusion phases. The first instrument was designed to assess the attitude of the students from the classes where CwMR are included (see Appendix I) The second instrument was designed to measure the social distance of people with mental retardation (PwMR) within the society as perceived by teachers and students (Appendix II). Both instruments were administered to the subjects before the inclusion program started and one year into the inclusion program. In addition, interview questions were prepared for Parents of CwMR (see Appendix III).

The quantitative data from the two instruments were processed through SPSS and separately analyzed from the qualitative data. The result from the qualitative data was also used to support the findings from the quantitative data.

3. 1 The Study Site

Kokebe Tsebah Pilot Program

Kokebe Tsebah Primary school is located in Addis Ababa, Ethiopia. It is one of over 100 primary schools in the capital. There are about 4000 children (7?15 years) attending this school. Out of these, 32 are children with mental retardation in a special class of their own. The special education class of Kokebe Tsebah started in 1988 on a pilot basis by the Ministry of Education based on the plan of action of the ministry during the first national workshop. It was the first program of its kind in Ethiopia. The center is within the compound of the elementary school but is located in the far corner of the school in a secluded place in a separate building, with separate playgrounds, and with a different timetable. The program started with 5 children and 5 personnel (only 2 had a short term orientation workshop on mental retardation and 3 assistants) and in fact did not have any educational materials or teachers guides.

There were two programs in the unit running all year round; a September ? June program (government supported) and a July?August program (NGO supported). The July?August program was initiated due to the overwhelming demand and the limited place and services during the September?June program. Swedish Save the Children (the funder of this study and the inclusion program) has been assisting the program for 9 years, targeting children who have no chances of attending the regular (September?June) program. Its main focus was on teaching the skills for daily life. By the end of 9 years (in 1997) the number of children attending the regular program was raised to 32. Currently a total of 54 children are benefiting from the regular program and about 30 from the summer (July?August) program. There are 4 teachers, one has had 3 month training in special education and the remaining 3 had the orientation training prepared for the inclusion program.

4. Results and Analysis

4.1 Perception of Teachers Regarding the Position of CwMR within the Classroom

As discussed above, the study attempted to establish the position of a CwMR in the society as perceived by regular teachers and regular students. The study is longitudinal and thus attempts to see changes in the positions of both groups either positively or negatively during the period of one year. As shown in Table 2, just before the inclusion of CwMR into the regular class, 54.4% of teachers in Kokebe Tsebah were willing to take CwMR into their classes. Furthermore, 66.7% were willing to let them sit together with regular students, 89.4% were willing to let them engage in sports and other play activities together with regular students and 84.1% were willing to assign them in group assignments. Considering the novelty of the practice, the perception seemed to be very positive and encouraging to include CwMR into the regular class. This was even more so considering the practical conditions in the regular school where the inclusion was supposed to take place. The size of the classroom was an average of 5x5 meters, the number of students in a single class was 80?90, the teachers did not have training in special education and there weren't any resources to support the teaching process. It should be noted that only 21% were willing to choose CwMR as class monitors.

Table 2 Position of CwMR within the Classroom

One year into the inclusion program, 83.3% were willing to take CwMR into their class, 82 4% to let them sit together with regular students, 77.8% were willing to let them engage in sports and other play activities, 83.3% were willing to assign them in group activities and 41.2% were willing to choose CwMR as class monitors (see Table 2). In almost all cases the perception has been positively improved. Although still very high, their willingness to let CMR participate freely in sports and other play activities has slightly decreased.

4.2 Perception of Teachers Regarding the Position of the CwMR in the Community

The second set of questions was destined to find the perception of teachers regarding the social status of CwMR in the community. These questions as used in earlier studies indicate social status of a certain group as compared to the majority of the population especially the status of minorities in a society. Results of such a study could indicate attitudes towards a certain group and potential success in degree of integration of the same group within the community. As shown in Table 3, about 84% of teachers were willing to have people with mental retardation (PwMR) as a friend, 16.9% were willing to marry, 8.1% to let their child marry, 53.3% to have as a best friend, 45.8% to accept as their child's friend and 81.8% as a neighbor. As expected, the willingness declines when the potential relationship is closer to the person and vice versa. Very few are willing to either marry or to let their children marry PwMR, The majority do not mind to have them as a neighbor or as a friend. One year into the inclusion, the perception remained at almost the same level. The only major improvement was regarding the willingness to accept CwMR as their child's friend (see Table 3). However, there is an overall slight improvement.

Table 3 Position of the CwMR in the Community

4.3 Perception of Students Regarding the Position of CwMR in the Classroom

A slightly modified set of questions on social status was given to students. These questions were aimed at finding the social status to use as indicators for inclusion into a normal class. About 52.7% of students were willing to learn together, 52.2% to accept as friend, 52.0% to have as a best friend, 48% to choose as monitor, 58% to play together and 53% to have as team mate (see Table 4). The attitude of children seems in almost all cases to lack a clear position on either pole. This kind of result is an indication of lack of information towards what is being asked. One year into the inclusion, there was a positive shift. More children than before the inclusion program are willing to accept as friends (69.4%), to have as best friend (61.8%), to choose as a class monitor (59.3%), to play together (72%), and to be in the same team during games (70.6%). In only one case (willingness to learn together) did the percentage decrease (40.1%) and even then only slightly. The results show that the perception of regular students and consequently their social status has improved from a neutral position before the process began.

Table 4 Position of the CwMR in the Classroom

4.4 Attitudes towards children with mental retardation

About 20 attitude adjectives; both with negative and positive implications were listed for students and teachers so that they could mark the one which they believed best described CwMR. The percentages indicate the number of times that adjective is picked as an expression of CwMR.

As shown in Table 5, most adjectives that have negative connotations have been selected very few times (worthless 12%, dishonest 10%, stupid 17%, slow 28%, sad 27%, dirty 18%). Only in one case was a negative adjective (noisy 73%) picked by a majority of students. By contrast, adjectives with positive connotations were picked by a relatively large number of students in comparison to the negative adjectives, which is similar to the results regarding positions of CwMR according to the students (Table 4). The number of times both positive and negative adjectives were chosen was below 50%. This could be due to among other things the lack of knowledge (information) of the regular students about mental retardation.

One year into the inclusion of CwMR, more children picked the positive adjectives than before the program started. 60.2% picked clean, 67.4% beautiful, 54.3% quite, 80% clean, 69.3% clever, 72.9 % kind, 66.4% funny. This indicates the experiences students had in the classroom were positive. By contrast, only very few percent of students picked the negative adjectives as expressing children with mental retardation. In some cases there was a very big improvement. Noisy was picked by 73% of the students before the inclusion program but this came down to 32.5% after the children knew each other in and outside classroom for a year.

Table 5 Attitude of Students towards CwMR

The same list of adjectives as given to students was given to teachers and were asked to indicate their opinion of PwMR. In contrast to students, a larger percent of teachers indicated more negative adjectives. Unfriendly (50%), sad (43.5%), slow (73.1 %), noisy (59.7%). Very few considered them as worthless (4.5%), stupid (4.5%) or dirty (13%) As shown in Table 6, the responses to the positive adjectives are mixed but mostly quite low. Only 18.8% view PwMR as happy, 13.4% beautiful, 3% attentive, 14.9% clean, 1.5% clever, 20.9% kind, and 34.3% independent. "Quiet" was the only positive adjective that was highly rated by the teachers (56.7%). The results show that the majority of the teachers marked negative adjectives to express CwMR before the inclusion program.

Table 6 Attitude of Teachers towards Cw1VIR

After the inclusion program, more teachers marked positive adjectives. More teachers rated CwMR as happy, beautiful, attentive, quite, clean, clever, kind, funny and independent (see table 6). One might argue that the percent in most cases is still below 50%, but one clearly sees a positive shift. Regarding the adjectives with negative connotations, three adjectives, noisy, slow, and unfriendly were still found to be descriptions of CwMR even after the inclusion program. But less number of teachers rated sick, worthless, stupid, sad and dirty.

4.5 Reactions of CwMR to the Inclusion Program

Information was also continuously gathered regarding the reactions of CwMR to the integrated education. This was possible through observations of the activities of the children themselves and responses of parents and special education teachers. There was uncertainty on the part of the children at the beginning of the program. They were a little shy and confused when they were first taken to the regular classes. This is understandable, as most of the CwMR did not cross the field to see the regular classrooms in the 9 or more years they had been in the school. They were made to cross this barrier which they thought was not for them. There was excitement when they were told about the intended movement to another class. Within a few weeks after the program started, all of the CwMR were not satisfied with the partial integration and wanted to stay in the same classroom as regular students the whole time. They begun to go directly to the regular classes when they came to school every morning, although they were expected to first go to their special class. There has not been any incident of refusal to go to the regular class from any child as yet.

4.6 Responses of Parents

Ten parents of CwMR that were included in the regular class were interviewed about the inclusion program. The results show that all parents saw positive changes in the daily activities of their children. They observed that the children are happier, more playful, more confident and more expressive now than they were before. The children like to talk more about their school now than before according to the parents. Social skills, independence control of their different body parts and display of more appropriate behavior have developed according to all parents. Summaries of the interviews of three parents are presented below. For reasons of privacy the names of the children have been changed.

4.6. 1 Tesfaye

Tesfaye is a 14 year old boy with mental retardation. He has no siblings and his parents are divorced with no permanent income. He joined Kokebe Tsebah special class in 1998. The same year, he started attending the pilot inclusion program. When he joined the program, he was restless, easily irritated, physically weak, unable to control his saliva, lacked communication skills and had little appetite. After the completion of the first academic year, improvements were observed. Among others, he gained physical strength become well socialized and improved his communication skills, is able to control his saliva to sit still, attend regular class and has an improved appetite. He is also able to watch TV for a long time and remember what he has watched. Tesfaye is currently able to express what he likes and dislikes and is able to take on and accomplish tasks at home which were not the case before.

4.6.2 Almaz

Almaz is a girl of 11 years old with mental retardation. She belongs to a family of 3 members, mother, father and one sister. She is the first born child. Her father is on a pension and her mother is a housewife. The family depends on the income they earn from the father's pension. In 1994, Almaz joined the special class program at Kokebe Tsebah Primary School. She was in the special class for 4 years before joining the inclusion program. Before she joined the program, her behaviors were among others, a lack of interest to do tasks and attend class, easily fade away, not abiding to the classroom rules, withdrawn, restless, easily irritated, aggressive and lack of communication skills. One year after her involvement in the inclusion program, she became able to socialize with her peers in and out of school, was able to abide to the norms at school and at home and developed reading and communication skills. Furthermore her restless and aggressive behaviors have subsided. Almaz is currently able to run errands requested by her parents.

4.6.3 Aremaya

Aremaya is a boy of 14 years old with mental retardation. He is the first born child and has 5 siblings. Both parents are alive and earn their living form daily manual laboring. Aremaya started attending the special class in 1997 and has been in the program for one year. Before joining the inclusive education program he was restless, had difficulty in socializing with his peers and others, lacked communication skills, was unable to accept ideas of others, was aggressive, was unable to take care of his personal hygiene, lacked interest to sit and attend class, lacked patience to carry out a given task, was not able to go to school by himself and unable to control his urine. Soon after attending the school for one year in the inclusion program, Aremaya was able to go without family assistance, sit and attend class, socialize with his peers and developed better communication skills, was able to attend to his personal hygiene and pass on messages with out any distortion of information. Presently he shows an interest in arts and sports especially football. He is also able to identify appropriate and inappropriate behavior. He has also developed a special skill for gardening, which helps him to keep busy at home.

5. Conclusion

The Convention on the Rights of the Child of which Ethiopia is a signatory, recognizes the rights of every child to education. However, the policies and practices regarding the education of CwDs in Ethiopia are of a discriminatory nature. The policies do not provide clear guidelines as to how the various needs of CwDs are to be met.

Studies from various countries as well as this study showed that children develop better physically, psychologically and socially if opportunities for learning together with other children are provided.

Although it is too soon to say if this pilot program is successful in addressing the educational needs of CwMR in a non?discriminating manner, one can safely say that the current trend is positive. All people involved in the program have a positive view. Regular students were helpful and more willing to learn together with CwMR and regular teachers also welcome more CwMR into their classes and to add additional subjects to the program. The school administration and the Education Bureau were more enthusiastic to the program, parents willing accepted the inclusion program and CwMR were also very much happy being with other children.

The study showed that the CwMR improved their social skills, their control of different body parts, their independence, displayed more appropriate behavior and improved their level of knowledge.

The regular teachers have also developed skills and improved knowledge in meeting the diverse needs of all children.

The experience and the knowledge gathered is sufficient for the researchers to say that inclusive education can work in a formal school system with a minimum of input.

What worked well

Activities carried out prior to the inclusion program (series of discussions with the school administration, parents and teachers, awareness raising seminars and training) are essential to develop a common understanding and team sprit.

Beginning with less demanding subjects (music, sports, etc.) minimizes tension and potential frustration of school administration, regular teachers, and children.

A committee comprising different stakeholders and regular discussions on the challenges and successes is pertinent to develop common ownership.

Initiating inclusive education implies extra support (technical and material).

What did not work so well

Special teachers were more protective of CwMR and thus slow in allowing the children to mix with other children. The researchers think that more time is required to change the protective attitude of these teachers.

6. References

Jonsson, Ture, 'Inclusive Education', UNDP, Unpublished manuscript

Ministry Of Education, The Federal Democratic Republic of Ethiopia Education Statistics Annual Abstract, EMIS, Addis Ababa, Ethiopia, 1997.

National Children's Commission, Report on the Survey of Disabled Children in Ethiopia, Addis Ababa, Ethiopia, March 1993.

Radda Barnen, Towards Inclusive Education: The Vietnamese Experience, Radda Barnen and lrene Lopez, 1995.

Tibebu Bogale, Meanings Attached to Disability, University of Jyvaskyla, Finland, 1994.

Appendix I

Questionnaire for Students
Tick the view you agree most

1. I would consider having a child with mental retardation as a

2. which of the following do you believe best describes a child with mental retardation

Appendix II

Questionnaire for Teachers
Tick the view you agree most

1. I would consider having a person with mental retardation as a

2. I would let a child with mental retardation

3. which of the following do you believe best describes a child with mental retardation

Appendix III

Interview questions for parents of children with mental retardation

Name of the child

Age

Sex

Condition of parents (family status, income status)

Number of children

Problem of the child

Do they have information about the inclusion program/were they asked before hand?

What was their view at the beginning?

What changes did the parent see in the past few months?

Inclusion: theory and practice

27/08/2003