4. SIDA's 1987 GUIDELINES FOR WORK WITHIN THE DISABILITY FIELD
SIDA's first guidelines for disability assistance were issued in 1987 by a reference group that had been formed in 1982. Besides staff from SIDA, the group included advisers appointed by the disability movement. The guidelines, which were revised in 1992, contained both general guidelines and guidelines for work within health care, education, infrastructure, rural development, and administration, which were adapted to the guidelines for the respective sectors.
The World Programme of Action principles comprised the basis of the guidelines. The Standard Rules were then in the process of preparation, but they were only adopted in December 1993. Disability aspects were to be taken into account in SIDA's cooperation with programme countries at various levels, but all efforts would be based on the country's own priorities, structure and experience. The Swedish organisations of persons with disabilities were to be given the opportunity to support and reinforce sister organisations in developing countries. Furthermore, SIDA would broaden and intensify its cooperation with organisations of persons with disabilities in Sweden in order to develop knowledge and experience. SIDA would work to ensure that more NGOs included disability issues in their cooperation and also generally take into account the work done by NGOs within the disability field.
In its cooperation with the UN's specialised agencies SIDA would emphasise the importance of fulfilling the World Programme of Action. Furthermore, use was to be made in bilateral cooperation of the experience gained through the UN work. SIDA was to encourage collaboration between multilateral organisations within the disability field, support methods development programmes via various multilateral organisations and work to ensure that such programmes were successively integrated into the ordinary activities of the respective body. Furthermore, SIDA would stimulate collaboration in the disability area between multilateral and national organisations in the developing countries.
SIDA would also work to ensure that other interested parties, for example NGOs, were more active in the disability field. SIDA would encourage increased knowledge within and outside SIDA and stimulate collaboration between various interested parties. It was emphasised in particular that persons with disabilities should themselves participate in this work.
5. SOME EXPERIENCES OF SUPPORT FOR PERSONS WITH DISABILITIES
Development cooperation within the disability field takes several forms. It is implemented by various interested parties and its content varies. The target group is in many instances directly involved. In other cases, the efforts made are expected to have indirect effects in the long term. Despite this diversity, some forms of support are more usual than others: CBR projects, education projects for children with special needs, and support to the development of organisations of persons with disabilities are typical examples of bilateral disability assistance. A major and important part of development cooperation is carried out by NGOs. Other common components are work with international policy and methods development.
5.1 Global efforts
All those interviewed have emphasised the importance of Sweden's efforts at the international level. Sweden has acted in various fora and advanced disability issues on the international agenda. This work has taken various forms and has been conducted through a variety of channels. Overall, it has contributed to positive developments within the disability field and resulted in several countries now being in the process of developing national disability policies. At the same time it was observed that international support for disability issues within the UN system decreased substantially during the 1990's, which threatens to destroy the advances made to date.
Some examples of global work are:
Support since the early 1980's to the WHO Rehabilitation Unit. This support has primarily been used to prepare and test CBR methods. This includes designing materials for the development of skills within the CBR field, among other things by producing and testing a comprehensive handbook - Training in the Community for People with Disabilities - which has also been translated into a large number of languages. Furthermore, a series of national and regional seminars about CBR has been conducted with the aim of drawing attention to disability issues and stimulating initiatives and projects, follow-up and discussion of experiences. The seminars have also enhanced knowledge about issues such as prostheses, assistive technology, cross-sectoral issues, CBR in post-war situations, etc. Support and advice in the planning and implementation of projects have also been included.
Support to UNDP's Inter-regional Programme for Disabled Persons. This has included follow-up of the World Programme of Action and the development of methods for, amongst other things, the planning and evaluation of disability projects, as well as the provision of advice and support to countries in conjunction with their policy development and planning.
Support to the UN Statistics Department in the form of funding and a Junior Professional Officer. This was aimed at developing methods, standards and guidelines for disability statistics along with a database of disability statistics primarily from developing countries.
Support to the Ear, Nose and Throat Clinic at Lund University, in cooperation with the Faculty of Medicine in Tanzania. Primary health care staff was trained in new, simple methods of diagnosis and treatment of ear infections, with the objective, amongst other things, of preventing hearing impairment.
Support to the Disabilities Studies Unit at Kelaniya University, Sri Lanka, to develop an international diploma course in CBR for project managers and staff with responsibility for disability issues.
Support to the International Child Health Unit (ICH), Uppsala University, to implement five-week courses in 'Rehabilitation in Low Income Countries' for participants from both developed and developing countries.
Support to AHRTAG, London and ICH, Uppsala for the development of a database containing information about and experiences of CBR and disability issues in the third world - the Disability Information Service. The aim is to supplement the more formal literature found in ordinary library databases.
Support to UNESCO for development of methods and for dissemination of information and experiences concerning education of children with special needs, and also preparatory work and follow-up of UNESCO's world conference in Salamanca relating to this subject.
SHIA and its member organisations' active advocacy work in various international fora is an example of another kind of effort that is of significance at the global level.
Furthermore, through support from and collaboration with Sida, Swedish institutes and experts have been able to build up an international network of contacts. They have participated in international conferences and other fora, where they have contributed to a valuable exchange of knowledge and experiences.
5.2 Bilateral Work
5.2.1 Community Based Rehabilitation (CBR) Projects
CBR support is included as part of the bilateral health cooperation with Zimbabwe, Kenya and the West Bank/Gaza, (in 1997 just over 10 million kronor), along with a minor part of rural development cooperation with Sri Lanka. CBR Projects are also supported by Swedish NGOs, among other places in Ghana through SHIA, and in Vietnam, Yemen and Cape Verde through Radda Barnen (Swedish Save the Children). The major components of this CBR assistance are usually various kinds of skills training along with the provision of transport in order to reach rural areas. Some equipment, tools and construction work may also be included.
CBR is a strategy to reach the majority of persons with disabilities. Experience shows that 60-70% of rehabilitation needs may be satisfied locally through effective CBR. This strategy has been designed with Swedish support by the WHO Disability Unit under the leadership of the Swedish physician Einar Helander. WHO has defined CBR as an integral part of general, locally-focused development programmes (community development). Its aim is to rehabilitate and integrate persons with disabilities in the local community and its activities. The person with the disability, family members, teachers, local opinion-builders and local politicians should actively participate in this process.
However, views differ on the content of CBR, and programmes may be arranged differently depending upon how the authorities, NGOs and others that implement the programmes interpret the concept. It is for example not unusual that CBR is only regarded as a method to reach out with simple medical rehabilitation to persons with disabilities living in rural areas.
Some CBR projects have been evaluated as very positive, whilst others have encountered major problems. CBR has also been criticised from several quarters, though positive opinions predominate. For instance, the Sida funded CBR programme in the West Bank/Gaza, which was evaluated in 1996, is judged to be one of the best in the world. The CBR programmes in Zimbabwe and Kenya are also viewed as successful, as is Radda Barnen's support to programmes in Yemen and Vietnam. The CBR strategy has now been adapted for national programmes in Vietnam, Zimbabwe and the West Bank/Gaza, where the objective is to establish a regular programme that will cover the whole country.
One strength of CBR programmes is that they also reach boys and girls, which is not always the case with programmes conducted by organisations of persons with disabilities (Peter Coleridge, in NU 2:95).
In order for a CBR project to be successful, certain conditions must be satisfied. Doctor Pupulin at the WHO Rehabilitation Unit mentions, for example, the importance of local knowledge and understanding, local involvement and responsibility during the whole programme cycle. One of the premises for CBR is also that persons with disabilities must play an active role in planning and implementation, but this does not always seem to work in practice.
Some are of the view that a weakness with CBR projects is that they are often based on voluntary work, which is unsustainable in the long term. Another problem for sustainability is that CBR projects are often small, geographically limited pilot projects without any state support, relying on external assistance. Another alleged weakness is that CBR is linked to health care and ministries of health (see Owako, 1995:77). For CBR programmes within the primary health care system to succeed, it is necessary that they are multifaceted and that there is cross-sectoral cooperation. Given these circumstances, some argue that ministries of social welfare may be better organs of tutelage for CBR than the ministries of health.
As has been mentioned in several connections, a necessary precondition for success is that the efforts made are cross-sectoral. This requires coordination between various authorities and institutions. A general experience is that such collaboration is easier at the local level than at central level. However, ILO, UNESCO and WHO have prepared a joint document to define their respective roles clearly, which represents a positive step towards cross-sectoral coordination. This has led in practice, among other things, to joint CBR projects in Ghana and Benin in which SHIA also participates together with the Norwegian Association of the Disabled.
It is also important that all those involved in a CBR project have a well-defined network of supporting institutions and consultative bodies outside the local community. How local involvement should be balanced against support at a high national level is often a difficult task. Education at several levels and in several stages is a key issue in this context.
Through Sida's institutional collaboration with ICH and support for its rehabilitation courses, a large number of men and women from both the South and the Nordic countries have acquired valuable knowledge about CBR. People with links to rehabilitation have been able to communicate this and to initiate and implement the CBR concept. A general view is that development cooperation should support the development of skills in recipient countries and in neighbouring countries in the region. However, more specialised staff education is also still needed in countries like Sweden. It should also be possible to improve the exchange of information between countries within the same region. This is necessary to ensure the sustainability of the programmes.
5.2.2 Support to education for children with special needs
Another field where Swedish development cooperation has had great impact is education for girls and boys with special needs. The aim is to contribute to the creation of the preconditions that enable children with disabilities to participate in the ordinary school system. Exceptions include deaf children, for whom other education measures have been supported. This cooperation has sometimes also been aimed at creating or improving support teaching for children with learning difficulties.
Sida has, since the middle of the 1970's, supported such efforts in Portugal 1976-1980, in Tanzania 1976-1993, in Botswana and Sri Lanka since 1983, in Zimbabwe since 1984, in Zambia 1980-1992, and also in South Africa since 1995. This support has generally comprised a combination of teacher training (e.g. training of special teachers and continuing education of class teachers in special teaching methods), production of teaching aids (e.g. books in Braille, large print and on tapes), assistive technology (e.g. technical hearing aids) and the development of national sign languages. Support has also been provided for policy development in the area, as well as to curriculum development. The aggregate support for these efforts amounted, over several years, to more than 10 MSEK per annum. During 1995/1996, the support to Botswana, Zimbabwe and Sri Lanka amounted to approximately 7.5 MSEK. Support for the development of policy and coordination work is included as part of the framework of the education support to South Africa.
It is difficult to draw any definite conclusions about Sida's support to education programmes for children with disabilities as only a few studies have been conducted. A general impression is that the number of children with disabilities who have access to education has increased significantly, though the statistics are not reliable. From the cost viewpoint, the development cooperation with Zimbabwe and Sri Lanka has been more effective than with Botswana, inter alia because Botswana has a comparatively small population.
Botswana: The support to Botswana has been included as part of a sector support programme. It has comprised institutional collaboration between the University College for Teacher Training, the Institution for Special Pedagogy, and the Central Resource Centre for Special Education. This collaboration aimed at supporting the Resource Centre in building up its work. Following the investigation of the needs of children, the Centre has the function of proposing suitable forms of schooling, arranging continuing education for teachers in the ordinary schools, providing advice about teaching aids and assistive technology, conducting support visits, etc.
It was laid down in the education policy of Botswana in 1993 that children with special needs should, to the greatest possible extent, attend ordinary schools. The division of responsibility between central authorities and local administrations was stipulated. Furthermore, a national disability policy was adopted.
The important functions of the Resource Centre have been fixed in a policy document. Despite a difficult initial period, it is now considered that the Centre has sufficient capacity to fulfill its tasks. After conducting a diagnosis, the Centre has provided a large number of children and parents with advice on schooling, teaching aids and trials of assistive technology. Within the framework of collaboration with the Institution, a small production unit has been established for the production of teaching aids in Braille and in large print. Further, Swedish consultants have been engaged in a successful effort to develop national sign languages. The institutional collaboration, which was concluded in December 1996, has also indirectly contributed to the policy work that has been conducted. Swedish assistance has amounted to approximately 1 MSEK per annum over the past few years.
Sri Lanka: Support to Sri Lanka is a part of the education sector support programme. It mainly consists of institutional collaboration between an institute for teacher training in Sri Lanka and the Institution for Special Pedagogy at Gothenburg University, and comprises support to the development of a curriculum for teacher training and continuing education, as well as to continuing education of the Institute's staff. A rather high percentage of children with disabilities attend school in Sri Lanka, the majority in ordinary schools, though placement in special classes or special schools is also common.
An evaluation conducted in 1996 concluded that Swedish development cooperation had been of importance for the programme. The Swedish assistance amounted to approximately 1 MSEK per annum.
Zimbabwe: Support for children with special needs in schools comprises part of the education sector assistance. Zimbabwe's policy is that children with disabilities should, to the greatest possible extent, attend ordinary schools. In a number of schools, there are so-called resource rooms with special teachers for support teaching. Children who are deaf or have hearing impairments are taught at special schools or in separate classes in ordinary schools. Children with intellectual impairments are usually taught in special classes. More than 100,000 children with disabilities attend school, which is a uniquely high proportion for a developing country. There is good collaboration in Zimbabwe within the disability field between various ministries, organisations of persons with disabilities and other actors.
Sida's assistance has been used for continuing education of teachers and other staff, for support visits conducted by mobile teams, and for equipping resource rooms. It has been used to purchase assistive technology (including technical hearing aids), to develop national sign languages, to establish a hearing technology laboratory and a unit for production of teaching aids for children who are blind or visually impaired. The Swedish contribution has, since 1987-1988, amounted to between 4 and 5 MSEK per annum.
The preliminary conclusions from an evaluation conducted in 1996 indicate that the programme's 'goal -achievement' has been good and that the Swedish assistance has been used effectively. According to the study, the Ministry is sufficiently competent to implement the programme, but there are still problems to be resolved, such as in the production of teaching aids in Braille and large print, in the supply of hearing equipment and in the repair of hearing aids. One interesting observation made is that the number of children with disabilities in the ordinary schools is greater in areas that have CBR operations than in areas without.
A general assessment of the support is that children who are within the school system have attained a significantly better position. This can, to a large extent, be explained by the fact that the various component efforts have had the effect of reinforcing each other. Efforts to improve knowledge within authorities, and among decision-makers and staff at all levels in the school system have been important, as have measures that have raised the status of special teaching.
In conclusion: a large amount of resources has been supplied to children in school, while children outside school, pre-school children, older children, and adult women and men have not been assigned priority. As the majority of children with disabilities do not attend school, these efforts need to be supplemented with other measures. All girls and boys with special needs should be given an opportunity to develop, parents' and local communities' knowledge needs to be improved, and values and attitudes have to be influenced. Rehabilitation and special teaching should go hand in hand. In this regard Zimbabwe provides an interesting example.
With the exception of a couple of countries, cooperation between ministries is not particularly common. It should be possible for CBR to act as a link, but it has so far seldom operated as such.
Experience indicates that girls with disabilities are discriminated against more than boys. Consequently, the situation of girls should be afforded more attention.
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5.2.3 Other bilateral disability assistance within country programmes
A focused effort was initiated in India to work with poor children with disabilities within the framework of a mother and child health care project (ICDS) in the province Tamil Nadu. This activity intended to integrate children with minor disabilities, particularly girls, into the project's pre-school activities. The project thus trained pre-school teachers in how to identify disabilities and, where necessary, to refer children for treatment and provide them with disability aids.
In Rajasthan, another Indian province, Sida provided assistance to two innovative education programmes - Shiksha Karmi ("Bare-footed Teacher") and Lok Jumbish (a popular movement for universal education). Both projects endeavour to integrate children with minor disabilities in schools.
5.3 Development cooperation via NGOs (non-governmental organisations)
An important complement to bilateral and multilateral support is Sida's development cooperation through NGOs. This cooperation is estimated to be a little larger than bilateral assistance to persons with disabilities (over 30 MSEK per annum compared with 20 MSEK for education and health care work). The contribution of Swedish organisations for persons with disabilities to assisting the development of sister organisations is of particular strategic importance.
5.3.1 SHIA (Swedish Organisations of Disabled Persons International Aid Association)
Among the non-government organisations, SHIA, which was formed in 1981, has a special position as an umbrella organisation for sixteen Swedish associations of persons with disabilities.@
The overall objective for SHIA's operation is, in cooperation with organisations of persons with disabilities in south, east and central Europe, to combat discrimination by improving respect for the rights of persons with disabilities.
SHIA's two areas of operational are development cooperation and advocacy. The development of organisations is the main aim of SHIA's development cooperation. To form and improve organisations of persons with disabilities is viewed as a necessary precondition for long-term promotion of the rights and opportunities of persons with disabilities. Persons with disabilities are among the poorest and most marginalised groups in the world. Therefore the development of their own organisations to represent their interests and actively participate in the development of society is very important.
SHIA's advocacy work has the objective of influencing other parties working with development cooperation to structure their cooperation so that persons with disabilities become participants. Another objective is to improve the quality of disability work undertaken, primarily through persons with disabilities and their organisations being actively involved.
SHIA's operations amount to almost 20 MSEK per annum. In 1998, the member federations of SHIA participated in about seventy projects in some 20 countries. In recent years, SHIA has made great efforts to document and analyse experience from development cooperation. One result of this that may be mentioned is the work to develop methods concerning women with disabilities. SHIA also works with the issue of children with disabilities and CBR, Community Based Rehabilitation. Another important component is the creation of instruments for the follow-up and evaluation of projects. In this connection, the UN Standard Rules are particularly important.
The basis for SHIA's work is that people with disabilities in Sweden cooperate with people with disabilities in developing countries - a collaboration that is based to a large extent on the common experience of living with a disability. Even if the practical preconditions vary, persons with disabilities throughout the world have experience of being marginalised and of living in societies that are not constructed with regard to their conditions. Thus the exchange of knowledge and experience between persons with disabilities in Sweden and in cooperating partner countries is central to SHIA's operations. To facilitate this, SHIA receives a special allocation to allow its member associations' representatives and their collaborating organisations to meet. This allocation finances expenses such as sign language interpreters, personal escorts and assistance, adaptation of various media, etc.
5.3.2 Radda Barnen (Swedish Save the Children - RB)
Children with disabilities comprise one of Radda Barnen's (RB) priority target groups, and the organisation has both a policy and a strategy on how to reach these children. Its work focuses on girls and boys with disabilities in particularly difficult situations: children in armed conflict, refugee and displaced children, street children, working children and other child groups at risk.
The starting point is the Convention on the Rights of the Child, and the right of the child to health, education, security and protection is emphasised, as is the right to direct participation. The child - not the disability - is emphasised.
RB works particularly within three areas: practical support, advocacy and studies. These efforts intertwine. Coordination with national and international organisations and authorities is emphasised.
Radda Barnen works with so-called disability-orientated programmes, such as CBR and inclusive education, but to an increasing extent with advocacy, directed towards children with disabilities being included in all programmes directed at children. Disability issues are increasingly mainstreamed in projects rather than a so-called disability programme being established.
CBR projects in Vietnam, Cape Verde, Yemen and Sao Tome have received support. In the latter three countries, this support is primarily directed at children. The training of teachers and other staff within the education sector is also included in Vietnam. In several other countries RB supports national organisations working with child rights issues that aim to mainstream disability issues, and organisations working with disabilities that aim to introduce a child rights perspective. A starting point for this is that attitudes can be influenced by local involvement.
Cooperation with other organisations and networks is an important component of the work at international level. RB also tries to influence states and UN bodies. One example is its critical review of how countries report on compliance with the Conven-tion on the Rights of the Child. The aim is that the UN Committee for the Rights of the Child should use this information in its discussions with the country in question.
5.3.3 Diakonia and NGOs (non-governmental organisations)
The support to CBR in the West Bank/Gaza that Sida channels through Diakonia comprises one part of the bilateral cooperation agreement with that territory.
Several other NGOs provide assistance that, in various ways, is related to the rehabilitation and education of persons with disabilities. For example, the operations of Roda Korset (Swedish Red Cross) include both rehabilitation and the manufacture of prostheses as part of its major humanitarian assistance work.
5.4 Institutional cooperation
Swedish university institutions and the Swedish Handicap Institute have participated in Swedish development cooperation in various ways. As mentioned previously, they have played an important role at global level. They have functioned as expert advisors to Sida in the planning, implementation and follow-up of projects. They have also organised training aimed at both improving the Swedish resource base and developing the skills of staff from recipient countries.
The institutions have also received grants from Sida to conduct their own research and methods development projects such as, for example, the Swedish Handicap Institute's work with appropriate technology applied to assistive technology. Through institutional collaboration, the resource base in Sweden has broadened, which makes it possible to make a greater contribution of relevant Swedish knowledge through development cooperation
5.5 A summary of experiences
- At the global level, Sweden's active involvement in the World Programme of Action and the development of the UN Standard Rules has been significant. Similarly, the various international contacts of Swedish organisations and institutions have contributed to Swedish experience and Swedish viewpoints being communicated and having influence at the global level. One conclusion is that Sweden should continue to play an active role in influencing global normative work.
- Looking at the various programme activities, these activities have had positive effects. However, their strategic importance could be increased by better coordination of the various efforts and also of the parties involved. Support has mainly been given to projects, while there is a lack of efforts for a more general integration of disability issues in various development programmes. Furthermore, there is no comprehensive dialogue on the disability issue.
- For disability support to be strategic, it should also cover the general social situation of persons with disabilities. However, apart from the CBR projects, which conceptually cover many different issues, these efforts have concentrated only on one or a few sectors, often education. Many school programmes have succeeded, which improves the situation at schools. However, as there are comparatively few children with disabilities who get to attend school, the general effect is limited.
- Some NGOs work both at policy level and with programme activities. Furthermore, Swedish organisations of persons with disabilities have focused on building and supporting sister organisations which, in a long-term perspective, is a vital precondition for the protection and monitoring of the rights and interests of persons with disabilities. Continued support to these operations and closer collaboration between NGOs and Sida would benefit Swedish development cooperation.
- Using the Standard Rules as assessment criteria, the conclusion can be drawn that development cooperation is concentrated on only one or a few of the areas that are identified in the Standard Rules. Examples of other areas for support include development of comprehensive policies and methods, competence and institutional development, social and psychosocial issues, culture and awareness-raising.
- Using the Convention on the Rights of the Child as a basis, it can be concluded that Swedish development cooperation through Sida is primarily a support for countries to satisfy one of the requirements of Article 23, namely that girls and boys with disabilities should have access to education. However, in a couple of countries there is an embryo of a more holistic approach, which is a necessary to the proper fulfilment of the articles of the Convention on the Rights of the Child.