|
|
|
|
Bibliographies : Save the Children (UK)
Sue Stubbs, October 1994 (Draft)
A. Early Identification and Early Intervention:
Save the Children Fund (SCF) supports the Zanzibar Association of Deaf People (UWZ) to run a Community-Based Rehabilitation (CBR) Programme in South and West districts of Zanzibar. One of the joint coordinators, Hassan Khamis, also works part time on a Ministry of Health Physiotherapy Outreach Programme in North District. The programme has been moving towards a more community-based model.
I visited the outreach programme together with Hassan and a physiotherapist colleague. Since my last visit they had focused on training community volunteers to work directly with families, and therefore their own visits focus on supervision. It is a major development to be training people at community level to support families. The volunteers we met were enthusiastic and conscientious. The volunteers (who had a better knowledge of the local communities) had discovered many more families with disabled children than the outreach team had identified. I accompanied the volunteer on a series of home visits, and all the children identified were either babies or very young. It is clear that as a means of comprehensive and early identification, the volunteer system is working.
However, the approach to work is still the same as before. The volunteer is primarily concerned with the child, and gives advice to the mother on how she can help the child through stimulation, exercises, better nutrition etc. The key problem identified by the volunteer and the outreach team was that often the mother would not follow this advice, and did not see its purpose. SCF has recently completed an anthropological research programme in Pemba Island looking at perceptions of sickness and ‘help-seeking behaviour’ amongst other things. Some interesting lessons from this research may be relevant here. The research raised the following issues (any inaccuracies are due to my interpretation):
Certain sicknesses affecting the whole child which would include types of disability, are seen as spiritual problems, not medical. This includes symptoms of malnutrition as not seen to be related to food.
Clinics and western medicine are seen to be relevant only to malfunction of body parts, not the ‘holistic’ conditions. So parents seek spiritual solutions.
To tell a mother that she is not feeding her child properly is considered to be grossly insulting. (This could also apply to telling a mother her child is ‘developmentally delayed/abnormal’.)
Not only is such ‘advice’ insulting, by speaking such words out loud, it is perceived as actually bringing misfortune (or curse) onto the child, and endangering the child.
Very young staff at the clinics who give such advice are perceived as ignorant and intolerant by mothers, who attend clinics only in order to get medicines/injections, accept advice in order to comply, but then ignore it.
Unless the disability is very visually/behaviourally obvious, general ‘developmental delay’ or hearing impairment may not be noticed or perceived as a problem in young children. The attitude would be ‘they will learn when they are ready’, and there would be substantial tolerance of different developmental patterns at this early age.
One example was where a young baby was identified as being very floppy and passive, and had not developed head control at the appropriate age. The baby was feeding and Hassan suggested that the mother encourage the child to take hold of the breasts (its arms were hanging loosely). The mother laughed out loud at this suggestion and said that her child couldn’t do this. Hassan demonstrated and tried to explain that if the mother kept placing the child’s hand on the breast and ‘modelled’ the behaviour, the child may eventually learn. There are many possible reasons why the mother would not follow this advice;
- she has no evidence that this will work,
- she has not spoken to other mothers who can tell her success stories, or seen children who have been helped,
- she may feel her child will learn in time if it is God’s will,
- she may be insulted about being told her child has a problem, she may feel that being told that the child has a ‘problem’ will actually make things worse,
- she may resent being advised by others (a younger unmarried girl and a man).
Some questions raised by this visit are; how can the programme work with families in such a way that respects and builds on their own beliefs about ‘undernourished/developmentally delayed’ children? Can the programme develop a more listening approach rather than immediately giving advice, and then work with the mothers/family to find solutions to their problems?
B. Early Intervention as a Development Issue
Another issue
was raised during a visit to two very undernourished children who had been left
unattended in a yard whilst the mother was queuing for water in the village.
When the mother returned, the volunteer and Hassan were advising her on
nutrition for her children. Apparently there had been some improvement.
However, it was obvious that poverty and water shortage were key problems for
this family, and no matter how willing she was to take advice, it is not clear
that she will necessarily be able to follow advice. The current approach which
focuses on the child rather than addressing the priorities of the family as a
whole may have limited impact.
SCF’s experience in other programmes has lead us to move forward from this ‘delivering physiotherapy to the home’ towards a more developmental approach. For example, facilitating mothers and disabled people’s groups to develop income generation, and raising awareness in the community to lessen the isolation of such families. Only when the mothers have developed some resources of their own are they able/willing to work to support their disabled child. Some questions raised by my visit were; what other general development initiatives (addressing poverty) are happening in the area, and how can the programme link with these?
C. Integrated Formal Education (Pre- and Primary Schools) - Case
Studies from Zanzibar CBR:
I have included the case studies on primary
as well as pre-schools. In reality, the ‘early childhood education’
for a disabled child may not start until they are well past the age of five -
often much older. It is important to examine our experience of any education
they receive (formally or informally) in order to learn what the issues
supporting or blocking early education are.
The CBR team are preparing for an evaluation of their programme, and so the visits to the integrated schools were also an opportunity for the CBR coordinators to pilot evaluation questionnaires for teachers, disabled and non-disabled children. Hassan and Zuwena therefore lead the visits and questioned teachers and children.
1. Mwembe Shauri Primary School
Interview with class teacher:
Mabadi is 11 years old and has
been in school for three years. He has rickets and is not able to walk. He has
no mobility aid (I think he is carried to school). Hassan asked the teacher
what her experiences of having Mabadi in the class was. She said his learning
capacity was lower than other children and he tended to be silent and isolated
when the children played group games (such as football). The teacher suggested
that repeating would be a way to help him (she had no experience of other
approaches). She said he liked to answer questions, but did not perform well in
exams. He has had no pre-school or preparation. She said he knows letters but
has a problem with memory. She felt that if he repeated it may make things
worse, because he would not be familiar with the group, and would be more
isolated. The father has said he will discuss vocational training with UWZ.
When she was asked about support, she said the headteacher would advise her to
spend more time with him.
Interview with Mabadi’s two closest friends:
Zuwena
asked them if they thought he benefited from being in the class. They said
‘he learns what he can learn’, ‘we cooperate very well’.
They were very positive.
General conditions: No books or resources in the room. Children sitting on the floor. In the school as a whole, many children moving around, doing gardening, not generally in classrooms being taught. Fortysix children in the classroom during our visit.
Issues: The teacher is obviously aware of Mabadi’s particular issues and has given thought to ways to help him, but has had no exposure to different approaches. The lack of any mobility aid is a main cause of isolation and dependency. In other schools visited, games had been devised which found ways to include the disabled child.
2. Kisauni Primary School, South West Extension Zone
Hamadi
is 16 years old and has had polio. He was very eloquent and so the team
interviewed him. He has been here for 2 years only, but always wanted to attend
school. His main problems were attitudes and mobility. Once he received his
tricycle from UWZ he integrated himself into the school. He does not find it a
problem being older than his classmates and has caught up rapidly, and is now
top of the class in standard 3. He is also building up a shoe repair and watch
repair business. He does not always attend regularly. Zuwena discussed this
with his class teacher. He is not punished for absence in the same way as other
children ‘because he is disabled’. Zuwena pointed out that he should
not expect special treatment because of his disability. However, in the light
of his age and need to build up income-generation activities, I feel that he
perhaps should not be criticised for irregular attendance, particularly as his
class work is of a very good standard.
We discussed the purpose of CBR visits. He is obviously well integrated and does not seem to need external support. However, some teachers in the school still have negative attitudes and the focus on the CBR team should be on the teacher attitudes and environment, not on the individual child. The school had only one tricycle-accessible classroom which was a hut built by the parents. The school had decided to keep him and his class in this room as they progressed through the standards, and move the other classes around instead.
3. Bwefum Primary School, South West Extension Zone
Said and
Salum are tow children with a learning disability; one is 16 and the other is
13 years old in a class with 11 year old children. The 13 year old (Said?) was
already in the class when we arrived. The teacher said he did not cooperate
with the other children and ‘wants to do what he wants to do’ and
could be aggressive. She said he likes to sit alone and watch games/activities
and does not join in. Initially she said he does not benefit from being in the
class, but the other children’s attitudes have changed. They used to fight
and tease him and now they do not.
Later the second child (Salum) walked in - he was a bit of a comedian and was greeted with laughter. He has obviously worked out what sort of behaviour obtains most response. The teacher felt she did not have enough knowledge to teach such children. She felt that they had benefited socially very much. When they first came they were dirty and badly groomed. Now they are neat and clean and they have learned socially appropriate behaviour. She feels that to keep repeating is not very useful and feels ‘disappointed that they don’t learn’.
One had been in the school prior to the CBR programme but had dropped out. Both began attending when the CBR programme began. They are friendly with each other. When asked what support they had received from CBR, she said that yes it had been a support, because she attended a workshop where they were encouraged to show love, accept the child and used pictures and posters to help learning. When asked about improvements, she said that either they should go to a special school, or there should be some support in teaching methods. The other children help them from their own initiative, but she responded to the suggestion of teacher-directed peer support, and felt that this would help the child to establish a relationship. The 16 year old did not start until he was 13.
A child who lived near one of them was asked about how he benefited. He said that before he used to get lost frequently, and now his parents know where he is. Also he is now able to keep himself clean.
General conditions: The class had 43 children, no books, no chalk, no writing on board or anything on walls. Very nice desks.
4. Mfenesini Pre-School
Suleman Zahoro is 7 years old and
hearing impaired. His younger brother was attending the school and his mother
believed that because he was deaf, there was no point in Suleman attending.
However, one day, he stole his brothers’ uniform and took himself to
school. When the headteacher discovered him he said ‘if he wants to learn,
let him stay’. Now the mother also pays fees for him. The teacher says
there is no problem with him being in the school. The teachers use sign with
him, he uses his fingers for counting arabic numbers, and pictures to point to.
They had devised an action-song game which he fully participated in using sign.
He has been in grade one for 6 months, and the teachers feel that the fact that
he is a bit older is a bit of a problem, and that ideally he should be with his
own age group. He currently has no contact with deaf adults and sign in
Zanzibar is not well developed. The headteacher believed his language is
improving and he has learnt a lot of social skills.
Once a ‘special’ teacher of the deaf visited and said that there were not enough deaf children to justify setting up a unit for her to teach. However the CBR team have discovered many hearing impaired children in the region. This is an interesting example of the implications of a ‘special teacher/special unit’ approach.
General conditions: Age-range is 2-5 years. The school had pictures on the wall and teaching aids. There was an atmosphere of energy and enthusiasm.
5. Mfenesini Primary School
In this school we interviewed
the headteacher. He has over 20 disabled children currently in the school. On
the wall was a chart listing all the disabled children, their types of
impairment and which grade they were in. Some were in the school prior to CBR,
others as a result of the CBR. CBR has helped in provision of mobility aids.
For the slow learners, the teachers ‘try to make things simple and
clear’. They offer extra help, sometimes even running extra classes on
Saturdays. The head says he is ‘very happy to be helping the community;
previously the disabled children were just stranded there’. He sees the
future of these children in terms of enabling them to be independent, gaining
vocational training. Some families won’t let their children attend school.
The teachers and majority of the community have very positive attitudes. Where
the attitudes are negative there are usually reasons such as lack of knowledge,
over-protection and poverty. He feels the Ministry of Education needs to
support integration by educating the community, and finding a means of
financial support for parents. Training is needed for teachers, also on how to
develop games to include disabled children. He wants to make the classrooms and
toilet accessible, and feels the MofEd should also support this.
6. Quranic Pre-School
Khalfan is nine years old and has
epilepsy. His home is very near by and so the teacher and other children are
not worried if he has a seizure. Although he is a little slow in learning,
there are also other slow learners. The father felt he had learnt a lot about
epilepsy from the CBR team. The children were on the floor in a small room. The
teacher was a very young local volunteer.
D. Special Education and Assessment - An Example of Donor
Policy
Education and Disability in East Africa has been dominated by
the role that the Danish International Development Agency (DANIDA) has played
in Special Education. DANIDA developed a special education programme in Kenya
over a period of ten years. This programme had two key components;
a)
support to establishing a training college for special education teachers,
b) a nationwide system of Education and Assessment Resources Services
(EARS).
Many millions of US$s were invested in this programme. The
programme is based on key concepts about special education which developed in
the West, and have always been contentious in the countries of origin. This
programme, with very few modifications, is currently being implemented in
Uganda, and there are plans for it to be developed in Nepal. SCF’s
experience of the programme in Kenya and Uganda is as follows;
Summary of Issues
1. ‘Early’ Education:
All the disabled children
were older than their peers and had usually started school very late. This did
not seem to be a problem for the children who had a physical disability and
were bright, but for the ones who had learning difficulty, it was a major
disadvantage; the children had already passed their optimum learning time, were
set in their ways, and were often isolated due to the age difference. Teachers
were disappointed and disillusioned by the failure of their efforts to educate
the children. Some of the possible obstacles to early intervention are;
2. Teacher Attitudes
The piloting of the evaluation
questions meant that discussions were more in-depth than usual, and the CBR
team felt they gained more information. It was clear that many teachers were
already trying to help children who were experiencing difficulty in responding
to the traditional curriculum (not just ‘disabled’ children) and were
not happy with repetition as the only method of helping these children. Where
they had heard of special units, they tended to feel that the disabled child
should go to a special unit. Where they had not heard of units, they felt they
should receive some more training in appropriate methods, and more support. We
did not come across any class teacher who felt that the disabled child should
not be educated. However, it was obvious that integration was still partly at
the whim of the individual teacher/headteacher, and that sometimes other
teachers in the school had negative attitudes.
3. Social Development
Even when the teacher/children felt
that a child was not benefiting academically, there was obviously an
acknowledgement of the social gains for the disabled child (cleanliness,
behaviour, discipline). The importance of the modelling of behaviour by
non-disabled children should not be underestimated, and would be lost in a
special unit (where mentally handicapped children are only together with other
mentally handicapped children).
4. General Education Standards
In many schools there was an
absolute lack of resources and even teachers. In one school, a teacher was
teaching a class where three quarters of the children were asleep. The focus on
disability needs to be a gateway or catalyst for the improvement of basic
education overall. Often enabling teachers to respond even a little more
appropriately to children who have learning difficulties results in more
teacher motivation and better practise for all children. Also the
community-based education of parents and children undertaken in the CBR
programme could perhaps be broadened out to be more integrated (integrated
playgroups, integrated parent education).
5. Mainstream Teacher Training
The CBR programme could be
instrumental in integrating a component in the mainstream teacher curriculum.
However, currently the CBR workers are not education-trained and would need
support. But this was an expressed need of class teachers who already had
disabled children with learning difficulties in their classes.
6. Different Needs
The different disabled children have very
different needs. For the physically disabled children, mobility and school
access was often the only (yet significant) obstacle to their education.
Hearing and visually impaired children also have an access need; access to the
existing curriculum. For the children with learning difficulties, the
curriculum and methodology were the barrier. Most had only mild/moderate
difficulty and could benefit from more flexible approaches. Children with
severe/multiple disability need to have access to an appropriate education,
which would often focus on developing basic daily living skills, and would be
best developed in the home environment with the parents and extended family.
Yet with all these children, negative attitudes, ignorance and isolation could
be additional barriers and the whole school/community environment needs to be
challenged in this respect.
7. Screening and Assessment are often assumed to be essential in work with young disabled children. Yet there is a huge difference between trying to identify objective individual characteristics of children which make them different from ‘the norm’ (which may result in labelling, segregation, insulting the mother), and setting up structures, systems and teacher skills which are able to help all children receive stimulation in learning, and to respond flexibly to individual children. The latter would enable systems and teachers to also respond to children from different cultural/ethnic backgrounds, ‘traumatised’ children, ‘street’ children without the labels. A child who cannot walk needs a means of getting to school and acceptance by his/her family, teachers and peers, not educational assessment or special education.
There are many more issues raised by SCF’s experience in CBR, this paper has highlighted only a few.
Sue Stubbs
Bibliographies : Save the Children (UK)
 |
 |
 |
11/11/1998