Sida's development cooperation for children and adults with disabilities

1. BACKGROUND

Ever since the World Programme of Action for Disabled Persons was adopted by the United Nations in 1982, Sida has worked for the integration of disability issues into development cooperation. This has been done in various ways, through various channels and via various appropriations. The purpose of this document is to summarise previous experience, describe current international policy issues within development cooperation and establish a basis for Sida's future planning within this field. The document is based on interviews with a number of key persons with long experience of development cooperation within the field, as well as a literature review.

This paper starts in Section 2 by describing a number of fundamental concepts. The international principles that comprise important control instruments for Sida's operations are summarised in Section 3. In Section 4, SIDA's guidelines of 1987 are described. In Section 5, the experience gained from Sida's cooperation in the area of disability is reviewed. In Sections 6 and 7, conclusions are presented together with proposals for objectives for the forthcoming 3-year period. These proposals are based on information derived from interviews, on Sida's general objectives and on today's development cooperation design.

2. SOME FUNDAMENTAL CONCEPTS

There are many concepts within the area of disability that are used in various ways and in various connections. Both disability and handicap are used in ordinary speech in a broad sense. Experts within the field use a more precise terminology. The following concepts often occur, for example in the UN's Standard Rules:

2.1 Disability and handicap

In many cases, war is the cause of both physical and psychosocial impairment. Illnesses and impairments can be permanent or transitory in nature. In daily speech, disability and handicap are used without any substantial differentiation. The fact that this provokes strong reactions is explained by the history of disability.

The term handicap arose from a medical approach that ignored defects in the surrounding environment.

The term disability covers a large number of different functional limitations occurring in any population in any country of the world. It is related to the individual. A person can have a disability as a result of physical or intellectual impairment, visual or auditory impairment or sickness, medical problems or mental illness. These, in their turn, may have several causes.

In the Standard Rules and other relevant documents, the term handicap is used to describe the interface between persons with a disability and their surroundings. When there is little or no possibility of a disabled person participating in the life of the community, a handicap exists. The aim of this definition is to focus attention on the shortcomings in the surroundings, which prevent people being able to participate on equal terms.

2.2 Preventative measures and rehabilitation

Preventative measures can aim at preventing the occurrence of various kinds of disabilities (primary prevention), or at preventing existing disabilities deteriorating or becoming permanent (secondary prevention).

There are many such measures. Primary health care, maternal and child care, medication, surgery, immunisation and safety equipment are some examples. The prevention of war and reduction of environmental pollution are further examples.

Rehabilitation has the objective of ensuring that people should attain and retain an optimal physical, intellectual, mental and social functional capacity, to afford them the opportunity of improving their lives and achieving the greatest possible independence.

Rehabilitation has the objective of ensuring that people should attain and retain an optimal physical, intellectual, mental and social functional capacity, to afford them the opportunity of improving their lives and achieving the greatest possible independence.

2.3 Community based rehabilitation - CBR

Another key concept is community-based rehabilitation, CBR. This is "a strategy to improve the quality of life of persons with disabilities by improving services, creating more equal opportunities and by respecting and defending their human rights" (E. Helander, NU 2:95).

The idea of CBR developed in the 1970's as a response to inadequacies in the existing ideology of institutional care. This approach could only satisfy a fraction of the needs for rehabilitation. Existing institutions were situated only in the major cities and furthermore were often of poor quality. They isolated people from their community, which thereby also became disengaged. CBR is an important aspect of Sida's support within the disability field and is covered in more detail in Section 5.

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2.4 Integrated education and inclusive education

The term integrated education has been used since the end of the 1970's. One result of the Salamanca Conference was that integrated education was replaced by inclusive education, which constitutes an extension of the same principle. In Swedish, one sometimes speaks of "one school for everybody".

Another common concept is special needs education, i.e. education for children with special needs. In Swedish, the term refers to special education for children with reading and writing difficulties, while the English usage is much broader.

The idea with inclusive education is that children with special needs should attend ordinary schools, either in the normal classes or in special classes. However, the way in which the idea is implemented varies considerably depending upon the needs and resources. Children can, for example, attend an ordinary class but when necessary be provided with special support and special assistive technology. They can also attend a special class in an ordinary school.

3. DISABILITY ISSUES GLOBALLY

The UN estimates that there are about 500 million persons who have a disability. Of these, approximately 300 million live in the developing countries and only a small proportion of them have access to services and rehabilitation.

Disability issues have attracted more attention during the latest UN conferences. This applies to the Salamanca Conference in 1994, the Social Summit Meeting in Copenhagen 1995, the Women's Conference in Beijing 1995 and Habitat 1996.

Several important documents have also been produced recently. The Convention on the Rights of the Child was adopted by the General Assembly of the UN in 1989. It has now been ratified by 191 countries, i.e. all countries but two. All these countries have thus undertaken to provide children with disabilities equal rights with all other children. Furthermore, in 1993 the UN adopted its Standard Rules in order to ensure participation and equality for people with disabilities. However, international interest in the UN's work with disability issues has in recent years dissipated. Many donors would rather contribute through NGOs (non-governmental organisations) than through the UN system.

3.1 The World Programme of Action

The UN declared 1981 to be the Year of the Disabled. This resulted in a World Programme of Action, which aimed to ensure that people with disabilities participated actively in society. The programme resulted in a fundamental change in views on disability issues. Previously, persons with disabilities had primarily been taken care of at institutions. The prevailing view was that it was the persons themselves who were handicapped.

Already at the end of the 1960's, disabled persons' organisations had advanced a new viewpoint: that a disability becomes a handicap as a result of the structure of one's surroundings and the attitudes of the public. This viewpoint comprised the basis for the World Programme, which lays down that it is necessary to structure the environment so that everyone has an opportunity to participate in society. The UN urged countries to appoint a national committee, to develop a national programme of action and to encourage people with disabilities to form their own organisations. A Decade of Disabled Persons 1983-1992 was declared, to implement the objectives laid down during the Year of the Disabled.

Many countries complied with the UN's call, but interest in disability issues lapsed after a while. A proposal to prepare a convention on the rights of persons with disabilities was rejected by the UN. Two reasons were given: first, that one should not treat persons with disabilities separately but integrate them, and secondly, that there were no resources to follow up more conventions, as the Convention on the Rights of the Child was in the process of being completed. Instead of a convention, a list of Standard Rules, which is an international instrument of another kind, was established. (From interview with Bengt Lindqvist in Ringar pa vattnet, 1994).

3.2 The Standard Rules

The Standard Rules on Equalisation of Opportunities for Persons with Disabilities were adopted by the General Assembly of the UN in December 1993. They were developed from the experience gained during the Decade of Disabled Persons and are grounded in international law on human rights. The 22 Rules are not legally binding but they can become international customary law when they have been adopted and observed by a majority of states. They demand a moral and political commitment by the nations of the world. According to the Rules, society should adapt to include persons with disabilities. The Rules express important principles as regards responsibility, action and cooperation.

The purpose of the Rules is to ensure that girls, boys, women and men with disabilities may enjoy the same rights and obligations as other citizens in society. The governments of the UN Member States thus have a responsibility to eliminate obstacles for persons with disabilities from fully participating in the activities of society. The Rules emphasise that persons with disabilities and their organisations should play an active role in this process.

According to the Rules, special attention should be paid to women, children, elderly people, the poor, migrant workers, persons with dual and multiple disabilities, indigenous people and ethnic minorities. Furthermore, there are a large number of refugees with disabilities who have special needs that require attention (see the Swedish edition of the Standard Rules, 1995:7-8).

Two key concepts in the Standard Rules are participation and equality. One principle is that social planning should be based on all resources being used in such a way that every individual is given the same opportunity to participate in society. The social sectors and our surroundings should be made accessible to everyone. Persons with disabilities have a right to continue to stay where they live. They should receive the support necessary within the regular systems of education, health and hospital care, the labour market and social welfare services. In tandem with persons with disabilities obtaining the same rights as others, they should also acquire the same obligations and responsibilities.

3.2.1 Preconditions for Participation

Four of the 22 Rules deal with the preconditions for participation on equal terms. The four preconditions are: a) increased awareness; b) medical care and treatment; c) rehabilitation and d) support and service. To promote increased awareness, states should, inter alia, ensure that disability issues are included in the education of all children and the training of teachers and other professional groups.

3.2.2 Areas of Participation

Eight areas for participation on equal terms have been identified: accessibility; education; employment; income, maintenance and social security; family life and personal integrity; culture; religion; recreation and sports. Accessibility is an underlying theme found in all these areas.

3.2.3. Ten Rules for Implementation

• Information and research should be extended and statistics collected (§ 13).
  
• Policies: The needs and interests of persons with disabilities should be included in general development plans and not treated separately (§14).
  
• Legislation: A combination of general and special laws may be desirable (§15).
  
• The Budget: States should include disability issues in the regular budget (§16).
  
• Coordination: States should ensure that disability issues are coordinated (§17).
  
• Organisations of persons with disabilities: States should recognise the advisory role of organisations of persons with disabilities and their right to represent persons with disabilities (§18).
  
• Personnel training: States are also responsible for ensuring that there is adequate training for all staff within the disability field. Training of staff at local level is particularly important in developing countries (§19).
  
• Evaluations. States are responsible for continuous monitoring and evaluation of national programmes and services. They should also disseminate information on the background to and results of the evaluations. States should participate in international cooperation to develop a common system for national evaluation in the disability field and should encourage coordinating committees to participate in this work (§20)
  
• Technical and economic cooperation: States have a joint responsibility to improve living conditions for persons with disabilities in developing countries. The measures to achieve participation and equality for persons with disabilities, including refugees, should be integrated into development programmes. Such measures must be included in all forms of cooperation. To develop the skills, common knowledge and capacity of persons with disabilities, and also to develop and disseminate appropriate technology and know-how should be given priority (§21)
  
• International cooperation: States should participate in the development of disability policy within the UN, its specialised agencies and other intergovernmental organisations. When appropriate, states should include disability issues in negotiations concerning standards, exchange of information, development programmes, etc. and they should encourage and support exchange of knowledge and experience (§22)

Within all the fields referred to, states are urged to facilitate opportunities for persons with disabilities to participate actively and to cooperate with disability organisations.

3.3 The UN Convention on the Rights of the Child

In the Convention on the Rights of the Child, children with disabilities are dealt with particularly in Article 23. This article stipulates that children with mental or physical disabilities are entitled to enjoy a rewarding life and actively participate in the community, that they are entitled to special care, and that both they and their custodians are entitled to necessary assistance. This assistance shall be free of charge, whenever possible. The state must ensure their access to education and preparation for employment, health care, rehabilitation and recreation. This support shall endeavour to ensure that children with disabilities achieve the fullest possible social integration and individual development. At the same time, cultural and spiritual development shall be promoted. Countries are urged to promote the exchange of information in the field of preventative health care and treatment methods, rehabilitation, education and vocational training. Such exchange can be particularly valuable for developing countries.

Even if the Convention only focuses on children with disabilities in a single article, there are several other articles that are relevant. One of the fundamental principles on which the Convention on the Rights of the Child is based is that all children have equal rights and that no one shall be discriminated against. This means that all its articles also apply to children with disabilities.

The extent to which countries share this view is unclear. The measures that are reported are often limited to the field of education (Lillemor Andersson-Brolin, 1996). However, children in pre-school years are an important target group, not least in view of the advantages of treating disabilities at an early stage.

3.4 The Salamanca Statement

In June 1994, the World Conference on Special Needs Education was held in Salamanca in Spain, with 92 governments and 25 international organisations participating. The participants agreed, inter alia, that every child is entitled to education and that children with special needs are entitled to participate in education within the ordinary school system. Furthermore, the Conference recognised that integration in ordinary schools is an effective means to combat discrimination and to change attitudes to persons with disabilities.

The Salamanca Statement urges both governments and the world community to promote inclusive education and to integrate special teaching methods as a component in all teacher training. UNESCO was assigned particular responsibility for this area. NGOs were encouraged to develop cooperation with governmental authorities and to involve themselves in education for people with special needs.

3.5 Common principles

There are a number of common principles in the above-mentioned international documents. One such principle is that adults and children with disabilities are entitled to rehabilitation and entitled to participate in the life of the community on equal terms with people who do not have disabilities. Great importance is attached to persons with disabilities and their organisations themselves actively participating in social planning and in political decisions.

In order to minimise obstacles and handicaps, a balance needs to be struck between integration and the provision of special assistance, but integration will be afforded priority above special solutions that involve isolation. Accessibility to social information, services, education, culture and work are further preconditions for persons with disabilities being able to live a full and satisfying life.

Those countries that bind themselves to realise these rights should also make them a foundation for development cooperation within the area of disability.