GUEST EDITORIAL

25 YEARS OF COMMUNITY-BASED REHABILITATION

ABSTRACT
Community-based rehabilitation (CBR) started to be evolved in 1974, 25 years ago. Since then CBR has developed from a concept to a policy and to a programme. In this article, a short personal account will be given of how this occurred, and some of the lessons learnt along the road.

THE CHALLENGE OF THE CONVENTIONAL SYSTEM FOR REHABILITATION

In the late 1960s it was becoming increasingly obvious that disability was common everywhere and that the number of people with disabilities in the developing countries was much higher than presumed. Experts began to express concern about the adequacy of the "conventional" type of services, provided in these countries (1). These services, the types of personnel and the models for conducting the work had to very large extent been inspired by professionals from the industrialised West.

In 1974, the following summary of the situation was given in a World Health Organisation (WHO) document (2):

"...rehabilitation services are practically non-existent or grossly inadequate in developing countries;...

"...there is an apparent lack of national planning and co-ordination of services (medical, educational, vocational, social, etc.) in most countries...

"...medical rehabilitation services have usually concentrated on institutional care, with a low turnover of patients at a high unit cost;

"...when advanced rehabilitation services and technology have been introduced in developing countries, the result has often been discouraging or a complete failure."

A UNESCO document states: "The stark reality is that the great majority of children and young people with special education needs do not receive an appropriate education, if they are offered any education at al." (3).

The conclusion already by the mid-1970s was that the conventional system for rehabilitation in the developing regions needed a number of substantial changes:

• of technology, so it would be better suited to the cultural, social, educational and health realities of the developing regions,
• of the service delivery system so that eventually all people with disabilities could be provided at least the essential services and opportunities. Obviously, this would not be possible without a radical change in the training of personnel. It was equally clear that untapped resources would have to be mobilised, most important were: the disabled person, the family and the community.
• of the management system, including policy-making, planning, ways of implementing, co-ordination of all sectors, technical supervision, and by an adequate and credible evaluation of its quality and costs. Community involvement was seen as a necessary component. This would be facilitated, if there were a process encouraging self-development. This would include local micro-management with decentralisation of the political decision-making and control of resources. Persons with disabilities and their families should be involved and empowered as part of this process.

POLITICS AT THE GLOBAL LEVEL.

The next question was political. Would this fundamental change of vision be politically possible? Would international bodies, such as the WHO, support changes that obviously would be resisted by large groups of professionals and organisations with stakes in the conventional system? A WHO Expert Panel Report had just a few years before recommended that the fundamental problems in developing countries would be solved by an extension of the "conventional" system. (4). This extension included in their opinion the training of huge numbers of (some 30, in the ideal case, according to them) different professionals. The implementation would, of course, have to wait for the time when national financing and trained personnel became available. Knowing well that there were insurmountable problems associated with their "solution", these experts had in reality concluded that rehabilitation in the developing countries in our times would not be feasible. The lack of "common sense" was obvious.

In 1973 the WHO elected a new Director-General, Dr. Halfdan Mahler, and with him started a period of 15 years of innovations, creativity and new policies. When I came to work for WHO in 1974, its headquarters was a beehive of ideas. In 1973 the leading Director, Dr. Kenneth Newell had with Dr. Esther Amundsen from Denmark written a forward-looking document about "Primary health care", in which they called for a total change of direction and priorities for health. Newell later on edited a book "Health by the people", which had a number of examples of how a system of already existing primary health care worked (5). "Appropriate technology" was seen as a very important part of the innovations (6). Dr. Mahler and Dr. J. Cohen at the headquarters of WHO promoted and directed the new ideas until a total change of WHO policy had led to the Alma-Ata Conference and Declaration in 1978 on Primary Health Care (PHC) and "Health for All by the Year 2000" (7). All countries in the world approved these radical changes of policies and pledged to implement them.

The "revolution" of health care implied moving away from the established professional-focused systems to people-oriented ones. Until then, some 90 per cent of the scarce health care budgets of most developing countries had been used for a few expensive hospitals in the main cities. With the new WHO policy, health care was to be " by the people", "for the people" and "of the people". All citizens should have at least the basic services. These should be available in their communities. Rehabilitation was declared as the fourth component of the primary health programme, with promotion, prevention and curative services. This proposal came from the Polish Member of the Executive Council of WHO and was approved without dissent. With this background, the World Health Assembly has at several instances approved the concept and programme for community bases rehabilitation (CBR) and called for its Member States to implement it. All concerned UN agencies have later on joined the call for CBR to be implemented.

This policy change was obviously in tune with other world-wide ideological transformations. These were times with many examples of political turmoil leading to terror and tragedies in some countries; in others to student, worker, peasant or military revolts, occupations of public buildings and demonstrations against authorities, uproars and falls of some dictators. Authority was being challenged everywhere, and not-so-new principles of participation, social justice, equality and solidarity were again being part of the vision.

However, some intergovernmental organisations for the time being walked somewhat carefully, when using words associated with "democracy" and "human rights". Their leaders preferred to use expressions such as the "New World Economic Order" and "equalisation of opportunities". At those times, it was widely believed that the best way out of misery and poverty was money. Governments, intergovernmental organisations and non-governmental organisations (NGOs) had in the 1950s started to provide funds to the developing countries in the belief that this would lead to great changes. In the beginning, there was not much questioning about the results. The money provided would in the end "somehow trickle down to the poor". Now we know that the policies of the past have been seriously flawed; the way out of poverty for the billions is yet to be found.

The conclusion of this was that the times were right for a change of the policies and programmes concerning disability and rehabilitation. A first step was to strengthen programmes for prevention of disabilities. Today large resources are going into such programmes. Next followed the efforts of meeting the essential needs of persons with disabilities in the communities where they lived. The new policy and programme was baptised as "Community-based Rehabilitation" (CBR); these words reflected the main idea about change. The "battle for CBR" was now to follow.

DEVELOPING CBR TECHNOLOGY

In 1978 started the phase of formulating the CBR technology: "What to do"? Western professionals had been severely criticised for copying and transferring rehabilitation technology from the industrialised countries. Some knew well that a great deal of Western rehabilitation was based on " methods and techniques not fully researched and substantiated" (8). In addition, when these techniques were transferred, not much effort had gone into adapting them to the culture, social and economic situation of the recipient countries. There was little or no research on the self-perceived needs of the group of "beneficiaries".

The "appropriate CBR technology" started with the reverse approach. The concept is built on the observation that family members are the best resource to handle the daily training and care of a disabled person. Most rehabilitation training is simple and repetitive. If explained well the family will understand and be able to do it.

Would it be possible to use this resource in the developing countries, just as it has been mobilised in the industrialised ones? In order to know the real situation better, visits were made to 15 developing countries. This study first confirmed the impression that the situation for disabled people was indeed as bad or worse than had been assumed. Disabled people virtually lived at the bottom of the society, at the mercy of their families, because most them had no income and no role in their society. A large proportion of those who were born disabled or acquired a disability early in life, hardly ever survived the age of 20. Diseases and malnutrition were common. Living conditions were at a very low level and there were hardly any services. When expatriates had set up services, they had a disturbing tendency to " transfer these to the nationals" after a limited time. As the nationals could not raise the funds needed, the quality of services deteriorated or were closed.

Other observations were more promising. Scattered examples of "spontaneous, indigenous rehabilitation" were detected. Intelligent and concerned family members had without any contact with professionals started to rehabilitate their own family members. One could note examples of blind persons walking around a village with the help of a branch of a tree; deaf people and their families, who had invented a limited sign language; polio victims had been trained to walk using parallel bars and given home-made crutches. There were examples of primitive but functional braces and prostheses. Evidently, there existed an indigenous "self-rehabilitation" technology in the community. It seemed to be a good idea to further research, copy and improve what had been observed, rather than to start by adapting Western technology. The next step was to systematically describe the technologies observed and to identify features common to all.

The technology work started in 1978. In 1979 the first edition of a Manual called "Training in the Community for People with Disabilities" (TCPD) was brought out (9). This manual has been revised several times and now appears in about 50 translations. The use of indigenous technology has been successful and in this way, cultural and educational problems often associated with transfers of Western technology have been reduced. The Manual was written directly for people, for those with disabilities, their families and community members. CBR does not build on the "medical system", because services for diagnosis and prescription will for a very long time be unavailable. The problem of the person with a disability is defined using terms as "difficulties to "move", to "see, to "hear", to "speak", to "learn". CBR rehabilitation activities are aimed at problem-solving. TCPD has 30 training packages and four guides, dealing with the most common problems. Great efforts were made to simplify the language, using computer analysis. The number of different words in the training packages was eventually brought down to less than 1500, and the average sentence is 11 words long. The text was illustrated with 2,200 line drawings. Community workers and the families who worked with various parts of it have reviewed the text. Experts with a long field experience of developing countries have been involved in a thorough revision of the TCPD.

Other technology books are now available. Although the WHO Manual has close to 900 pages, it cannot cover all details. More details have been written, for instance, by the Helen Keller International, on how to train persons with vision impairment for their daily tasks. Morris and House in Zimbabwe have authored a Manual about communication; the text covers close to 500 pages. (10)

CREATING A SERVICE DELIVERY SYSTEM.

The next question was: How can the technology reach people? The "conventional system" had mostly been built on elaborate team systems. The advantage is that when a number of qualified specialists get involved in the rehabilitation process, it should increase the quality of work. The problems in practice are many: it is costly, time-consuming, often complicated to co-ordinate because of interpersonal conflicts and it makes many people with disabilities confused.

For the situation in the developing countries, one would rather recommend a service delivery system, which can be operated using local human resources and multi-purpose personnel. To set this up, one must on a large scale disseminate knowledge about disability and the skills of the demystified rehabilitation methods. Various models have been tried out. Fig 1 gives an overview of the model for CBR service delivery, built on present experience.

In the first line, people with disabilities and their families are engaged in the training programmes carried out at home. A community worker (Local Supervisor, Community Rehabilitation Facilitator) assists them. With a full-time worker, the population covered by one worker could be about 5,000. This person should receive sufficient training to be competent to carry out all the activities described in TCPD. The training period is recommended to be about 10 weeks, and it can be modular. The community worker receives technical supervision from a professional (Intermediate-level Co-ordinator or Supervisor, Multiple-purpose Rehabilitation Worker), who has at least one year of training. With a full-time professional, who has adequate transportation, about 100,000 people in a district can be covered.

In most developing countries, it is unaffordable to have specialisation on the community and district levels. Consequently, the community worker and intermediate-level supervisor need to acquire knowledge and skills concerning all types of disabilities. The training should include functional training, education, ability training and vocational aspects, income generation, security and human rights, representation, and participation in mainstream programmes for community development. As all rehabilitation cannot be carried out in the community, a liaison needs to be established with the available referral systems.

A more detailed CBR strategy regarding personnel was subsequently developed (11), with the following principles.

1. The basic personnel should be chosen by the local community and live there at easy distance from those who need the services.
2. There must be records, reports and evaluation of the work. The community should participate in the evaluation
3. The community work should be micro-managed by the local administration (council) of the community (village, urban quarter). The community could either use already existing structures, such as the Community Council, or set up a separate body such as a Community Rehabilitation Committee. The Intermediate-level professional would be attached to the District administration.
4. The CBR worker needs to have sufficient time to do the job with good quality.
5. The CBR worker and the community committee members must be cost-conscious. Costs should be held at a level that is economically realistic and maintainable. An (unfortunately frequent) habit of referring all people with disabilities to distant and expensive specialists and centres has to be avoided. This is only possible, if the community worker and the professional are well trained.

MANAGEMENT CONCERNS

To develop a system to eventually cover all in need is a challenge. The number of moderately and severely persons with disabilities in the developing regions of the world are cautiously estimated to be about 234 million in 2000, and will grow to about 525 million in 2035. This increase equals 8.3 million per year or close to 23,000 per day. Not all of them will need or would be prepared to take part in a rehabilitation programme. With a cautious calculation, at least 70 million persons with disabilities would now benefit from services. By 2035, they number will have more than doubled to 149 million. About 97 per cent of those who need rehabilitation in the less developed regions of the world do not receive any meaningful services. The needs are growing much quicker than the annually added supply of services. Most services are still provided by NGOs, which are based in urban areas and little, if any, help is available in rural areas.

The systems for management started to be developed early and include:

1. Formulation of clear policies
2. Quantification of needs
3. Development of strategies and approaches
4. National Planning
5. Evaluation systems
6. Financing and budgeting

The effectiveness and sustainability of the system depends first on the presence of a decentralised management system. The Government needs to support the communities by providing the backbone of administrative, training and technical back-up components of CBR. This requires a political commitment by the government and the provision of dependable and permanent financing. To develop sustainable managerial infrastructures and plan for and find an adequate budget will require a considerable time.

Certain factors can contribute to secure a sustainable management system. These include for instance, the realisation of the governments and local authorities of the role that disabled people will eventually play as consumers and pressure groups. Their rights to representation in a democratic society, and to their share of the fruits of development must be respected.

EFFECTIVENESS OF CBR.

A large number of field studies and research have been made (12). A summary of some of the studies is given in table 1.

THE FUTURE OF CBR

25 years ago the concept and programme of Community-based Rehabilitation was launched. It has become widely known and, on a mostly small scale, practised almost everywhere; the WHO has reported that programmes using the title of CBR exist in about 90 countries. It is clear that some of those are still based in institutions or simple outreach programmes without adequate involvement of the community. A "proper CBR programme" should include communities' own decision about CBR, local provision of at least some resources, their participation in evaluation and their micro-management. Persons with disabilities and their families should be given influence. Communities in a CBR programme must have "ownership" to the programme. The realisation of such a decentralised and democratised system is still far away.

CBR is built on common sense. It is part of a vision that eventually all persons with disabilities will be seen and considered as first-class citizens, whose neglected needs for services and opportunities, whose right to life, health, education, income and security will no more be jeopardised. It is built on what is realistic to do at each given situation. There is no reason to believe that common sense will easily go away. However, what is seen as common sense will change, as will the realities facing persons with disabilities. For this reason CBR will change.

A number of developments will help CBR in the future, such as:

1. Encouragement to "self- development" and local self-government. It is well known that too much control and regulations from above (from Governments and various overseas donors) is unhealthy for development, it crushes the entrepreneurial spirit.
2. A change of those education systems both at school and at home, which today encourage "discipline and obedience" at the expense of the development of the minds and creativity of young people.
3. Better access to mainstream development programmes. These are today not enough concerned about the minorities among the poor.
4. Better quality and cost control of programmes for persons with disabilities (13). Having a "bottom line" will help to create a better credibility and sustainability of such programmes.
5. Training of a larger group of knowledgeable professionals, especially in planning and management of CBR (14).

For most people with disabilities the situation can at present be expected to become worse each year. Most of them are to be found among the poorest of the poor, and will remain there until something substantial is done. We have on our hands a growing moral, social, health and economic problem of vast proportions. When will it go away?

REFERENCES

1. International Society for Rehabilitation of the Disabled. The Development of Rehabilitation Services in Relation to Available Resources. New York, 1970.
2. Helander E. Disability Prevention and Rehabilitation. WHO document A29/INF.DOC./I, Geneva, 1976.
3. Jonsson T. Special Needs education. UNESCO, Paris, 1992.
4. World Health Organisation .Rehabilitation. Technical Report Series, Geneva, 1969.
5. Newell K (Ed) Health by the People , WHO, Geneva, 1976.
6. Schumacher K. Small is Beautiful. London, 1976
7. World Health Organisation. The Alma Ata Declaration, 1978.
8. Hardy RE. The issue of Theory in Rehabilitation. in S Regnier, M. Petkovsek (ed) Rehabilitation, 25 years of Concepts, Principles, Perspectives. Chicago, National Easter Seal Society, 1985.
9. Helander E, Mendis P, Nelson G amd Goerdt A. Training in the Community for people with Disabilities, 4th edition. WHO, Geneva, 1991.
10. Morris J. House H. Let's Communicate. Rehabilitation Unit, Ministry of Health, Zimbabwe, UNICEF and WHO, 1997.
11. Helander E. A Service Delivery system for Community-.based rehabilitation. Guidelines for the design and training programmes for the personnel. International Institute for Rehabilitation Management, France, 1999.
12. Jonsson T. Operations monitoring and Assessment of Rehabilitation (OMAR). UNDP, Geneva, 1996
13. Helander E. Prejudice and Dignity. An Introduction to Community-based Rehabilitation. 2nd Edition, UNDP, Geneva, 1999.
14. Helander E. Quality and Cost Control of Rehabilitation Programmes. A Practical Guide on Cost, Effectiveness and Efficiency Assessments. International Institute for Rehabilitation Management, France, 1999.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 11 @ No. 1 @ 2000

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