Abstract
This paper discusses the need for health therapists working with children with disabilities to go beyond their traditional role of providing treatment and become more involved in health promotion. It describes an evaluation of the health promotion activities of physiotherapists, occupational therapists and speech therapists working at a special school in South Africa. Tembaletu School, in Guguletu, a poor socio-economic residential area in Cape Town, was established for Xhosa speaking children with physical disabilities.
Joint lobbying and advocacy campaigns by the therapists from the school and the disabled people's organisations in the community have been undertaken. The paper discusses how this re-orientation of therapy services towards health promotion activities will provide more appropriate support for teachers in mainstream schools to promote the inclusion of children with disabilities. This is in line with the report of the National Commission on Special Needs in Education and Training (NSCNET) and the National Committee on Education Support Services (NCESS) which recommended "the adoption of the 'health promotion school' strategy at all centres of learning".
The paper makes recommendations for therapists to develop their advocacy role challenging the barriers children with disabilities experience in inclusion and participation in the education system and their own communities.
In this paper I will present a case study of a special school in South Africa. I will describe how the role of the physiotherapists, occupational therapists and speech therapists working at the school has changed in relation to the parents. Inclusion in education involves equal participation and non-discrimination in the learning process. This is possible in a range of settings including both special schools and mainstream schools. In inclusive education children with disabilities should be able to be educated with their able-bodied peers. Educational institutions in South Africa need to work toward this goal by providing support mechanisms to ensure all children have access (Department of Education 1999).
In the late 1990's, the therapists from Tembaletu School ('Our Hope') established partnerships with the parents of the disabled children, and undertook joint participatory action in advocacy campaigns.
I have had contact with the school for a number of years. I first interviewed one of the therapists in 1996. Then I visited the school on a regular basis, often once a week, to do clinical teaching with the student therapists and more recently, I again interviewed a group of therapists.
To begin I will give you a brief introduction to the school. Tembaletu School is in Guguletu, a suburb of Cape Town. Guguletu was developed in the 1960's when Black people were moved out of residential areas in Cape Town, which had been declared 'white' or 'coloured' under the apartheid law the Group Areas Act. Today it is still a black residential area.
Tembaletu School is a primary school for children with physical disabilities. It is the only feeder school for a very large geographical area, including about half a million residents.
The children come from poor communities, many families having only recently moved from rural areas to the urban area to find employment. Some of the parents moved to the urban areas in the hope of finding educational facilities for their disabled child. The families of the children attending the school are Xhosa speaking and the medium of instruction is Xhosa. The children are brought to school by bus on a daily basis. Disabled children from wealthier families in the area tend to send their children to special schools in other more affluent areas.
There are 220 children at the school with ages ranging from 3 to 20 years of age. The young children attend pre-primary classes. Although it is a primary school where the children follow the regular school syllabus, there are several older children who, as a result of their disability, did not start school at the usual school going age, accounting for the children in their late teens still being in primary school. Often these children have come from the rural areas where they had no access to education. Some of the children have tried to go to mainstream schools and have come to Tembaletu after constant teasing or bullying by other children. For others, it was the teacher at the mainstream school who said they must leave the school and not come back, because they have a disability,
The Department of Education recognises that children with disabilities who go to mainstream school are frequently faced with negative attitudes toward disability. Some traditional and religious beliefs have led to teachers fearing including a child with a disability in their class (Department of Education 1997).
The children have a range of physical disabilities as a result of problems including cerebral palsy, spina bifida, polio, osteogenesis imperfecta, arthrogryposis and traumatic spinal lesions.
There are three physiotherapists, two occupational therapists and one speech therapist working in the school. A much better situation than only a few years ago when there was only one occupational therapist. Now all the children have access to some support from the therapists.
However, there are large numbers of children with disabilities living in Guguletu and the adjacent areas who have no access to any education - either in special schools or in mainstream schools. These children seldom have access to therapy. In South Africa, it has been estimated that approximately 70% of children with disabilities are presently outside the school system (INDS).
The school therapists have decided that a part of their role is to provide a resource facility to this section of the community. They have an openness to the community the children come from seldom found in other special schools. They are the first point of entry into the school. In the words of one of the therapists 'any person with a disability, adult or child can come through the door for an assessment at any time or to ask for advice or a referral'.
The school therapists have developed an extensive network of relationships with various people and organisations who work in the area. This includes links with the disabled people's organisations, with the day care centres started by parents of disabled children, with the local primary schools, with NGOs and with professionals working at the state health facilities. When parents come to the school with their disabled children or when adults with disabilities come with queries, the therapists are able to share this information and make referrals.
The therapists have also been given the responsibility for assessing the children for admission to the school. There is no psychologist in the school to assist them, although I am told there may be one to help from next term.
Many tasks the therapists are involved with are the same as therapists working with disabled children throughout the world. They arrange for appropriate assistive devices; arrange for the children to see specialist personnel; organise appropriate seating and positioning in the classrooms and provide opportunities for the children to participate in sports for the disabled.
As they work with children from poor families they also need to fundraise for expensive equipment such as wheelchairs to use both at home and at school. Although 50 children at school use wheelchairs, many of them do not have a wheelchair to use at home.
The therapists seldom withdraw children from class to work with them on a one-to-one basis. This only occurs in exceptional circumstances such as after surgery. Instead, they work in the classrooms, working closely with the teachers.
But what is most interesting is the their involvement in advocacy campaigns with the parents of the Tembaletu School children and others from the community. I will describe one of these campaigns.
In 1998 it became almost impossible for people to get assistive devices in Cape Town, except from private orthotists. The state Orthopaedic Workshop, which supplies assistive devices, not only to people in Cape Town but also the whole of the Western Cape and beyond its borders, closed as a result of a financial crisis. This was the sole supplier of splints that were needed to support the children's arms and legs, braces to support their spines and crutches.
Many children at Tembaletu School were now unable to walk without the devices they needed. More children needed to go into wheelchairs and the school therapists struggled to find enough wheelchairs in good repair for the extra children.
But, before I go on I need to tell you briefly about a community group in Guguletu called Masiphatisane Disability Forum, ('Let's work together') made up of many individuals and groups in the community with an interest in people with disabilities.
The therapists brought the problem of the closure of the Orthopaedic Workshop to the Masiphatisane meeting and a number of disabled adults spoke of how they, too, were experiencing problems. They were unable to get new appliances or get their broken appliances repaired.
The meeting decided joint action was urgently needed.
Firstly, the school therapists and the parents of the Tembaletu School children contacted the media. As a result, an article highlighting the crisis appeared in the local newspapers.
Consequently, the therapists and the management of the Orthopaedic Workshop were interviewed on the local radio stations. At the same time a delegation of people from Masiphatisane, including therapists and people with disabilities, went to see the Minister of Health demanding that something be done to change the situation - they lobbied for the Orthopaedic Workshop to be reopened.
And what was the result of this joint action?
Firstly, the Minister of Health agreed to reopen the Orthopaedic Workshop. He also promised five more posts at the workshop. This enabled the backlog that had built up to be attended to and new orders and repairs were again possible.
Secondly, there was also an important skills development component. Arrangements were made for three disabled members of Masiphatisane to go to the Orthopaedic Workshop for three months training to learn how to repair callipers and boots. One member of the group, Kenneth returned to develop a workshop in Guguletu and they now repair the assistive devices of the Tembaletu School children.
Thirdly, the public sent financial donations to Tembaletu School. This enabled the therapists to purchase assistive devices for a limited number of children from private orthotists. A useful short term solution.
Finally two other important outcomes, and difficult ones to measure, are the capacity building that took place amongst all who participated in the action - including the parents of the disabled children and the therapists and most important - barriers were broken down between the professionals, the parents and the disabled people.
Parents of the disabled children at Tembaletu School have increasingly become empowered and are encouraged to make informed choices. Their self-esteem has improved. They value the role they see adults with disabilities playing in Masiphatisane and this enables them to attach greater value to their own disabled children, in a society where people with disabilities are frequently seen as a burden.
Therapists are increasingly accepting the social model and rejecting the medical model of disability however, recommendations that health workers become active in advocacy campaigns have seldom been acted on. Advocacy was proposed as an essential part of health promotion as long ago as 1986 when the World Health Organisation (WHO) held its first international health promotion conference. The actions of the school therapists are in line with the five priority 'action' areas that were identified at the conference in the Ottawa Charter:
The actions of the therapists have helped to create a supportive environment for health at the school, while strengthening community action with Masiphatisane Disability Forum and developing the parent's personal skills.
More recently, in 1997, at the fourth international health promotion conference of WHO, the Jakarta Conference, the need for a comprehensive approach to health development was again emphasised. The conference suggested this could be implemented using 'settings for health'. One of these settings is the health promoting school. In addition WHO set the following priorities for the 21st century (WHO 1998):
Partnerships between professionals and the community have developed with an increase in the capacity of the community, while empowering the parents of the children. As has been demonstrated with the links between the therapists and the parents and community groups in Guguletu, these partnerships in themselves can change attitudes.
Building partnerships with the local community is an important part of developing health promoting schools. In 1997 the South African Department of Education recommended 'the adoption of the health promoting school strategy at all centres of learning in the country. The health promoting school can be seen as a 'move towards development rather than only solving problems' (Department of Education 1997).
This is a new approach in South Africa and Tembaletu School has not yet decided to become a health promoting school. However, the links that have begun to develop between the therapists and the community groups are an important move towards this. The link between the health promoting school, changing attitudes and more effective inclusion needs to be explored further.
What is the way forward?
One of the reasons for the successful involvement of the therapists with the community groups has been the support given by the principal of the school. Although not personally involved she has allowed Masiphatisane meetings to be held at the school during the school day. The school therapists and other organisations provide transport for parents attending the meetings. In recognition of the value of Masiphatisane to the children, the therapists are able to attend the meetings.
Unfortunately, the teachers at Tembaletu School have not become involved in the links with the community groups. It was not possible for them to leave their classrooms to attend the meetings. Although they recognise the positive impact advocacy campaigns have had on the children, they have not had the experience of working as equals in joint activities with the parents or with disabled adults. It would be valuable if the therapists could find some way of drawing the teachers in.
One way to consider breaking down the barriers that children experience going to mainstream schools as a result of negative attitudes toward disability would be for teachers from mainstream schools, or student teachers to get involved in community groups of disabled adults or parents of disabled children. Joint action on an equal footing will have a greater impact on changing teacher's attitudes and promoting the inclusion of children with disabilities than many hours of theory.
To conclude I'd like to mention that in 1996 one of the therapists stated that with only three therapists (at that time) serving a population of 500 000, 'it was not possible for therapists to have a role in inclusion'. I suggest they have proved themselves wrong. They have been a part of the joint actions that have resulted in empowerment and in changing attitudes - both essential to successful inclusion. In my opinion, although it is not an ideal model, there are many aspects of their approach to working with parents on the advocacy campaigns that other therapists could learn from. I also think it is a rich learning experience for the student therapists who spend time at the school to be a part of.
Therapists who work in special schools in South Africa are being challenged by the changes in the education policy, which supports the choice of parents of children with special needs to attend mainstream school. Now more than ever, therapists need to re-evaluate their roles. Will they simply try to continue an old system of withdrawing individual children from class for 'hands on therapy' or will they take on new roles including advocacy. Are therapists prepared to empower parents and pass decision making on to them? Therapists in South Africa who work with children with disabilities, and are concerned about their inclusion both in school and the broader society, need to consider using aspects of this model of joint action with community groups as the education system goes through radical restructuring.
Or in the words that have been adopted by organisations of disabled people throughout the world, including the Disabled People of South Africa (DPSA), 'Nothing about us without us'.
References:
Department of Education, Quality Education for All, overcoming barriers to learning and development, Report of the National Commission on Special Needs in Education and Training (NCSNET) and National Committee on Education Support Services (NCESS), 1997, Pretoria.
Department of Education, Consultative Paper N0 1 on Special Education: Building an Inclusive Education and Training System, First Steps, 1999, Pretoria.
White Paper on an Integrated National Disability Strategy, 1997, Office of the Deputy President, Pretoria.
Struthers P., The Inclusion of Children with Special Educational Needs in Mainstream Schools: The role of physiotherapy, occupational therapy and speech therapy, 1997, Unpublished MPhil thesis, UWC.
World Health Organisation (WHO), 1998, Fact Sheet No171, Geneva. I
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