ISPO An Asian Prosthetics and Orthotics Workshop '98 in Japan Final Report

COMMUNITY BASED REHABILITATION (CBR) PROGRAMME IN THE DEVELOPING COUNTRIES (WHO)

Linda L. Milan

Perhaps as many as 300 hundred million people in the Asian and Pacific Region are disabled. Globally, the number is estimated to be about 500 million. In many countries, at least one person out of 10 is disabled by physical, mental or sensory impairment. The causes of disabilities are varied and are fairly well known. So is the technology which could prevent or control most disablement.

Avoidable disability is a prime cause of human deprivation and economic waste in both developing and developed countries. It is increasingly recognised, on the other hand, that programmes to prevent impairments or to ensure that impairments do not progress into more limiting disabilities are less costly to society in the long run than having to care later for disabled persons.

Governments everywhere have embarked on programmes that contribute to the reduction in the incidence of impairments. These efforts have met with varying degrees of success. However, while great strides have been made in the prevention of disability, more systematic effort and breakthroughs are required with regard to rehabilitation and social integration of people with disabilities.

The World Programme of Action Concerning Disabled Persons was adopted by the United Nations General Assembly in 1982 to promote effective measures for prevention of disability, rehabilitation and the realisation of the goals of "full participation" of disabled people in social life and development, and of "equality". It is clear that rehabilitation just does not end in the disabled having gone through a series of therapies and services. Far from it. Rehabilitation should encompass all measures that must be taken to provide the disabled opportunities equal to those of the whole population, and an equal share in the improvement of living conditions resulting from social and economic development. This social dimension of rehabilitation is often left out in rehabilitation programmes. This partly explains why people with disabilities often fail to achieve their full potentials, to participate in regular community services and activities, and to enjoy a better quality of life. After all, full participation in the basic units of society - family, social groups and community - is the essence of human existence.

Disability in Developing Countries

The problems of disability in developing countries need to be specially highlighted. Up to about 80% of the disabled live in isolated rural areas. In some of these countries, the percentage of the disabled population could be as high as 20% and, if families and relatives are included, 50% of the population could be adversely affected by disability. The problem is compounded by fact that, for the most part, disabled persons are also poor people subjected to the consequences of poverty such as malnutrition, insanitary environment and ignorance of basic health practices. They live in areas where medical and other related services are scarce, or even totally absent. In such cases, disabilities are not and cannot be detected in time. When they do receive medical attention, the impairment may have already become irreversible. Another dimension to the problem is the concentration of rehabilitation facilities and trained personnel in the major urban areas. As a result, disabled persons in rural areas are deprived of rehabilitation services, or they flock to urban areas to secure these services in centres or institutions which are consequently placed under heavy strain.

In view of these realities, the need for the development of an innovative strategy for intervention in areas that are unreached or underserved cannot be overemphasised.

The needs of disabled people and their families are varied thus a concerted, multisectoral action is necessary. The services provided to meet these needs must be located as close as possible to disabled individuals and their families to ensure that they are appropriate. Such services should take into account the social and economic context; mobilise local resources; make use of and integrate existing ordinary services; and above all, seek to promote positive social attitudes towards disabled people.

Community-based Rehabilitation: The Alternative

Experience has taught us that there is a growing role for the individual, the family, the community, and the nation in making health and better quality of life a reality for all people. The declaration of Alma Ata in 1978 states that "the people have the right and duty to participate individually and collectively in the planning and implementation of their health care". This simply means that we should help people take active participation in their own health care. Societies, institutions and organisations like WHO will be there to facilitate the process, create supportive environments and promote the equalisation of opportunities.

Following a World Health Assembly resolution in 1976 (WHA 29.68) and the Alma Ata Conference, WHO launched community-based rehabilitation or CBR as the innovative approach to enable developing countries to offer essential services to as many disabled persons as possible, where they live, at a low cost and at a convenient time. Implemented in the context of primary health care, CBR is believed to be the most viable strategy to meet the global challenge of disability. CBR was first defined by WHO in 1981 as "measures taken at the community level to use and build on the resources of the community including the impaired, the disabled, the handicapped persons themselves and their families and their communities as a whole".

A model was designed which demonstrates the interaction among different levels of health care and other sectors concerned with disability prevention and rehabilitation. The levels are the basic community level, the intermediate support level and the specialised services level.

The first level consists of disabled persons, their families and the community workers. It also includes existing community agencies and organisations, governmental or non-governmental, operating within the community. Here, basic rehabilitation services are delivered in the natural environment - at home and in the immediate vicinity of the disabled persons.

The intermediate support level involves existing general health services with manpower that has a higher competence and other resources more sophisticated than those found at the community level.

At the specialised services level are the medical and vocational rehabilitation, special education and social services.

In 1994, a joint position paper on CBR was issued by the International Labour Organisation (ILO), the United Nations Educational, Scientific and Cultural Organisation (UNESCO) and the World Health Organisation (WHO). The concept of CBR was broadened and it came to be known as a strategy within community development for the rehabilitation, equalisation of opportunities and social integration of all people with disabilities. It is implemented through the combined efforts of disabled people themselves, their families and communities and the appropriate health, education, vocational and social services. Development and implementation of CBR is therefore guided by the principles of equality, solidarity and integration.

Drawing inspiration from the primary health care emphasis on strengthening community self-reliance in health care and prevention of illness and disability, CBR aims to:

enhance self-reliance and active involvement of disabled persons by maximising the development of their own potential;
increase the participation of family and community members in the delivery of services to disabled persons;
bring about change within the community to accept and support the rights of disabled persons as equal members;
strengthen the role of general development efforts in disability prevention, rehabilitation and equalisation of opportunities; and
encourage greater involvement of rehabilitation personnel in disability prevention.

However one defines CBR, a constant theme is that important resources for rehabilitation exist in the families of disabled persons and in their communities. So while still providing qualified medical, social and pedagogical services, rehabilitation programmes are gradually being replaced by programmes which involve the communities and families who are helped to support the efforts of their disabled members to overcome the disabling effects of impairment within a normal social environment.

In the Western Pacific Region of WHO, the Regional Committee adopted in 1980 a resolution (WPR/RC31.20) which recommended the development of programmes aimed at disability prevention and rehabilitation through primary health care. As you know, the Western Pacific Region is characterised by wide diversity in terms of social and economic development, culture and religion, political systems and traditions. Given that, our cooperation has mainly focused on strengthening national capabilities in rehabilitation programme planning and management, on training various categories of rehabilitation personnel and developing community-based programmes.

Rehabilitation programmes have been significantly reoriented from being institution based to one that is community-based. Non-governmental organisations have actively collaborated with governments and WHO in the development of rehabilitation services. Such collaboration has been strengthened through consultations and meetings. Continued advocacy by the Regional Office has contributed to the increasing awareness by countries of the problem of disability, thus paving the way for national initiatives in developing or expanding community-based rehabilitation services.

WHO Collaborating Centres for Rehabilitation have also been utilised optimally for a wide range of activities - from advocacy, information exchange, programme development and management, training and research to programme evaluation. To date, six out of 11 WHO Collaborating Centres for Rehabilitation in the world, are located in the Western Pacific Region.

The Region is among the pioneers in CBR development and implementation, with China and the Philippines being among the first countries to encourage the development of CBR within the context of primary health care.

Implementing CBR programmes

How is CBR implemented? CBR is appropriate for both industrialised and developing countries. The broad methods used to implement it are applicable in either setting. These are.

(1) the formulation and implementation of policies to support CBR:

(2) the encouragement and support of communities to assume responsibility for the rehabilitation of their members who have disabilities;

(3) the strengthening of rehabilitation referral services for health, education and labour at various levels; and

(4) the establishment of a system for programme management and evaluation.

The detailed methods of implementing CBR will obviously vary among countries depending on the resources and the various infrastructure available; the social, political and economic realities; the level of awareness and commitment of the leadership and the community to the welfare of people with disabilities.

For example, the formulation of national policy could be initiated in response to international agreements and declarations such as the World Programme of Action Concerning Disabled Persons. Or, it could be instigated by demands and pressures coming from within the country or the locality from the stakeholders such as disabled persons organisations or other groups or sectors involved in rehabilitation.

On the other hand, community action for CBR rarely begins spontaneously. It could be initiated as a follow-through for national initiatives or as an undertaking of agencies, groups or organisations responsible for the programme. In any case, it is important that the community has sufficient awareness of the situation of people with disabilities and what could be done to prevent disabilities and to promote rehabilitation in the community. The community has to realise that something has to be done to help the disabled so that they could become active members of the community; and that it has the needed resources to carry out rehabilitation in the community.

A major resource available in the community is people. Community and religious leaders, members of community organisations, people concerned about their friends and neighbours with disabilities, and the disabled people themselves can all participate in improving the situation of disabled people.

Thorough preparation is particularly important at this stage. The community has to be convinced that there is such a need and it would decide whether CBR will become part of its ongoing community development activities. In this way, the community will have ownership of the programme, will commit resources for it and assume responsibility for its implementation.

CBR programme management at higher levels, on the other hand, should support community efforts through transfer of knowledge and skills needed to carry out rehabilitation activities. The community has to be provided with information that is simple, practical, yet comprehensive. This should include facts about various issues concerning living with disability and guidance on how to identify and use resources within and outside the community. In relation to this, referral services need to be developed and strengthened and linkages with partners established. It is very important for a CBR programme to have links and access to referral and specialised services and facilities (including the social, education and labour sectors) whenever expertise that is not available in the community would be required.

A core group of community members who are concerned with disability issues should be established. This group which should comprise local community leaders, representatives of the different sectors including the disabled persons, should design the community action programme, formulate strategies and identify target audiences. It also should establish and maintain close co-ordination with other partners, generate resources required for running the programme and monitor and evaluate its impact.

Community-based Rehabilitation Programmes

CBR development and implementation in various countries have taken on different forms. The policies and principles are understood and accepted. In practice however, there is a great range of activities that are subsumed under what is called community-based rehabilitation. The CBR approach adopted in any particular country will depend, for example, on who has initiated the approach, the context in which it was introduced and the identified need. Ultimately, programme evaluation will be able to shed light on the features of the different CBR models that have been or are being undertaken in the different countries.

Let me cite to you a few examples. A sample survey conducted in China in 1987 showed that there were ever 50 million disabled persons in the country. Of serious concern was that a great number of disabled persons have yet to receive the necessary rehabilitation services. In accordance with provisions of the Eighth Five-Year Plan and the Guidelines of the Social Security Law on Disabled People of the People's Republic of China, CBR programmes within the context of primary health care have been initiated and rapidly developed in several provinces including Beijing, Guangdong and Hubei to provide services and facilitate social Integration of China's disabled population. The WHO manual, Training in. the community for people with disabilities, was translated into Chinese and used in training of personnel, families and other members of the CBR team and as guidelines in carrying out CBR activities.

One of the main constraints to the expansion of CBR is the lack of adequately trained manpower at different levels. Among other things, a programme to train 1,000 rehabilitation physicians and middle- level personnel by the year 2000 was- therefore undertaken in collaboration with the Hong Kong Society for Rehabilitation and WHO. In addition to the academic training, short training courses were conducted. In late 1996, more than 2,000 personnel have been trained. Evaluation of the programme showed that graduates who have gone back to their respective places of assignment have contributed to the delivery of rehabilitation services in their communities.

In Vietnam, the Government has taken steps to improve the situation of disabled people. Preliminary data from 25 provinces where CBR is implemented showed that 5% to 7% of the population is either physically or mentally disabled. A three-level rehabilitation network has been established from central to local levels with rehabilitation departments in the hospital system and CBR programmes in the community. CBR exists in 25 provinces, 56 districts and 630 communes. As it was in China, a main constraint is the lack of trained personnel. The plan Development of Rehabilitation Speciality Towards The Year 2000, was formulated and training of different rehabilitation personnel is being given high priority.

CBR as implemented in the Philippines closely follows the WHO model in both structure and process. First initiated as a pilot project in one province of the country, the project represented the first experience in decentralisation and integration of delivery of essential rehabilitation services in underserved areas with the aim of making such services available and accessible to a wide number of disabled persons. This was achieved through expansion of the reach of the rehabilitation services and lowering the cost of delivering the services. This first project was and still is being managed by a nongovernmental organisation, the Negros Occidental Rehabilitation Foundation, Inc., one of the six WHO Collaborating Centres for Rehabilitation in the Region. While it had been expanded to cover more areas, the project remained confined to the same province. It had been able to establish support services such as the rehabilitation centre which is the main referral centre for medical and higher technical rehabilitation services: the village-based appropriate aids store which produces technical aids using local materials and technology; the satellite rehabilitation post manned by volunteer professionals for prevention, early-intervention, group therapy sessions and evaluation for referrals; the special education units in some local schools; or organisation and training of self-help groups and volunteers as service providers; and subsidy to poor disabled persons trough linkages with local and foreign funding agencies for provision of medicine. technical aids. educational grants, etc.

National government, on the other hand, initiated a CBR programme in one municipality. The programme developed rapidly with full commitment of local government, the community members and the disabled persons and their families. Given the success of the programme, national government proceeded with expansion to other parts of the country until coverage becomes nation-wide.

India's involvement with CBR began in 1980. Kerala State was selected for the field testing of the WHO manual. The Physical Medicine and Rehabilitation Department and the Social Preventive Medicine Department of the Medical College of Trivandrum collaborated in the project which involved the establishment of a model demonstration for a community-based disability prevention and programme for training and research. In addition, essential rehabilitation services were also provided to the population by the health unit in the area. A local adaptation of the WHO manual was reproduced and used in training, and workshops were organised to encourage similar integrated primary health care and disability prevention and rehabilitation programmes in other states.

Sustaining CBR Programmes

We could see different models of CBR from the few examples that were given. We see that the approach and the programme thrust are determined by local conditions. We also see how such programmes have addressed priority problems that have been identified. Whatever the catalyst may be for introducing CBR, or the point of initiation, or its main feature, an issue that needs to be addressed is the sustainability of these programmes.

A CBR programme will have greater chances to be sustained when the following factors are present: recognition and articulation of a need; indication from the community of a readiness to meet this need; and the availability of support from outside the community. To put it simply, we do not expect a community to be involved if it does not perceive a need for action. And, unless the community is willing to meet an identified need, no support is provided to the community.

What then should be done to ensure that CBR programmes may be sustained? First, as I have indicated earlier, the community has to be allowed to determine its priorities with regard to rehabilitation and social integration of people with disabilities. This also means that disabled people and their families must participate in the process of identifying the priorities. Of course, this does not preclude people from outside the community from pointing out measures which have not been identified by the community but which can be addressed realistically. Secondly, the programme must be viewed by the community as its own. This means that CBR activities must be discussed with community leaders, who will eventually decide on the activities they will undertake. Lastly, support from outside the community does not only mean making available facilities and other services. Most important is political support at the higher level and government policy which promotes community efforts. Lessons have been learned from years of implementing CBR programmes. Even given the three factors above there are still other issues which can weaken the programme or prevent its implementation.

A common observation has been that an isolated CBR project, which is not related to some government policy or programme, and therefore is not part of the government health infrastructure, has little chance of being sustained or expanded to cover a broader area. This is sometimes the case when an organisation, driven by its commitment and zeal to promote CBR provides a great deal of external support to a CBR project which is not linked to any government policy or priority. At the start, there may be a perceived need and the community may be motivated because of the initial external support. Gradually, however, as the level of support decreases, the CBR project also withers and dies.

Another common weakness or constraint is the lack of a community worker. This is being addressed by training of selected community members who will work with the disabled persons and their families. Maintaining the commitment and motivation of the CBR worker is one of the major challenges for community leaders and CBR programme managers.

Evaluations of a few CBR programmes have been conducted. The result showed significant reduction in the severity of the disability and improvement in functional capacity, independence and degree of socialisation. The conclusion was, when CBR was applied with good management, it will lead to results that are as good as, or better than, the results obtained by professionals working in institutions.

Finally, CBR has been demonstrated as the first approach of this kind to successfully penetrate far into previously unreached areas. This is undoubtedly a tribute to the initiative, determination, and resourcefulness of families of disabled persons, the community worker, leaders and disabled persons themselves.

The weaknesses that are observed, both from the technical and social perspective, need to be further analysed and, where necessary, corrected. There is little doubt that CBR works, is effective and hence an appropriate alternative, especially in developing countries. This conviction should provide the stimulus for greater efforts so that it may reach more areas, and more disabled people.

Commemorating the Mid-Point of Asia and Pacific Decade of Disabled Persons
ISPO An Asian Prosthetics and Orthotics Workshop '98 in Japan Final Report
- Papers : Community Based Rehabilitation (CBR) Programme in the Developing Countries -

Editors:
Eiji Tazawa
Brendan McHugh

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