COMMUNITY BASED REHABILITATION THE VELLORE EXPERIENCE

Department of Physical Medicine and Rehabilitation & Low Cost Effective Care Unit Christian Medical College, Vellore, India
(Supported by Government of India and World Health Organization)

COMMUNITY BASED REHABILITATION AN URBAN EXPERIENCE

FOREWORD This document describes the experience of a team of professionals, community volunteers and people with disability in an urban area in implementing a Community Based Rehabilitation (CBR) project. The aim of the project was to improve the quality of Life (QOL) of People With Disability (PWD), their families and communities, using a problem solving approach. It also describes their experience in enhancing awareness of issues related to disability prevention and its management in the local communities. The team used the WHO Manual on Disability as the basic guide, adding from the experience of team members and consultants from various areas of expertise. This is not a report of our project. Nor it is a manual on communitybased rehabilitation. We hope that the sharing of our experiences will enable others to take up the challenge to work for and with people with disability in their communities to improve their quality of life. COMMUNITY BASED REHABILITATION The general concept about CBR is that it is a quick, cheap episodic distribution of some appliances for physically disabled people living in a rural area. Many government as well as non government agencies, with all good intentions to rehabilitate disabled people, resort to quick fix solutions, with no long lasting impact in the community. Rehabilitation, considered as functional restoration, can be achieved only by empowering the disabled as well by enriching their community. Rehabilitation, which is based in the community, thus acquires a deeper meaning. It amounts to development of the community as a whole, empowering the disabled persons to achieve their complete potential, enabling them to integrate into the fabric of the community and make decisions for themselves. This could also involve dealing with both physical and architectural barriers within the community. Empowering the disabled persons may involve medical, social, vocational and educational inputs. Enriching the community involves education, creating awareness, providing basic resources, changing attitudes and building constructive approaches towards disability and related problems. WHY CBR? Institutional Rehabilitation provides excellent services to address the problems of individual disabled persons and is often available only for a small number at a very high cost. Institutional overheads and other major infrastructural expenses make the process very expensive. Moreover, the endeavours in an institution are often out of context to the felt needs of the disabled person, and thus falls short of their expectations. The fact that this person comes from a particular background and cultural setting is often ignored. The institutional culture is imposed on the disabled person and they are often expected to 2

function as advised by the experts. In an institutional rehabilitation programme, the community is not linked with the process. Hence, when the disabled persons return home, it may become difficult for them to integrate into their community. Many institutions follow community-oriented approaches. In this method of approach, the services are provided at the level of community through an outreach clinic or camp based approach. The programme is guided by the institution and directed by the availability of the resources. The patients and community are only the beneficiaries. e.g. as and when appliances like wheelchair, tricycle, or calipers become available, they get distributed whether it is appropriate or not. However, these strategies are inadequate to respond to the needs and expectations of the disabled and their community. Rehabilitation based in the community ensures community participation, uses locally available resources and learns from existing innovative approaches in the community. The general estimate is that approximately 10% of any population is disabled. Among them 70% of the problems related to disability could be addressed in the community itself, usually with locally available resources. Community Based Rehabilitation is defined as a strategy within community development, for rehabilitation, equalization of opportunities and social integraton of all people with disabilities. Community Based Rehabilitation is implemented through the combined efforts of the disabled people themselves, their families and communities along with medical and other experts as appropriate, incorporating health education, vocational and social services (ILO, UNESCO & WHO, 1994, Community Based Rehabilitation For and with people with disabilities a joint position paper) Accomplishing this involves creation of awareness in the community regarding disability, value of disability prevention, and rehabilitation methods. In order to base the rehabilitation in the community it is of prime importance to inspire the community and recruit volunteers for this task. This is not an easy process. Absolute altruism is against the basic principle of biological evolution, a fact which needs to be considered, whereas recruiting people for a remuneration will often lead to building up a group of people who are more interested in perks than the task. A healthy mix of altruism combined with practicality is a crucial ingredient in community-based rehabilitation. An education and training model was found to be a compromise approach, which is likely to succeed, as will be explained subsequently. The volunteers need to be trained to identify and intervene appropriately to deliver rehabilitation services in the community. As Volunteers gain expertise in managing 70% of disability problems, they will also encounter 30% of the difficult problems related to disability, which they are not able to deal with and solve within the community. The relevance of secondary and tertiary care centers, which are linked to CBR, therefore becomes quite crucial at this juncture. These links help the CBR workers (local volunteers) to deal with difficult problems, learn from them, and thereby become confident in the whole process of CBR through their interactions with disabled people, families and community as well as trainers from secondary and tertiary centers. Thus, a CBR set-up established in the community 3

comprising of local people, who are supported by secondary and tertiary centers for help as and when difficulties are encountered, is an effective approach, which maintains and sustains the process of CBR. These interactions between the local community and the secondary and tertiary centers are mutually beneficial. The secondary and tertiary care centers get a feel for the ground realities, and the community gets the benefit of the knowledge and expertise of these centers. Together they can then evolve solutions that are relevant and appropriate for the community. In addition, linking with the schools, other community developmental programmes, Government Organizations and Non Government Organizations will further enrich the CBR programme and facilitate long-term sustainability. It is often debated whether CBR should follow a medical or social model. Issues concerning health and society are deeply interlinked and inseparable, and attempts to delink or compartmentalise these interwoven aspects will be unnatural and artificial. Therefore, solutions mooted from polarized viewpoints are likely to be unsuccessful in the long run. In this project we used an educative model. This included both medical and social aspects of rehabilitation. It generated skill and expertise for development and rehabilitation, which can be available always in the local community. HOW WE DID CBR Planning The Department of Physical Medicine and Rehabilitaton has many years of experience with rehabilitation of individuals with disability. The staff of PMR have been working with severely disabled patients and have developed an expertise for the comprehensive rehabilitation of these patients. The Low Cost Effective Care Unit has been working with the urban poor of Vellore Town for over 20 years, providing secondary care services as well as referrals to the tertiary care centers as needed. Primary care has not been developed until more recently. Issues faced The team at LCECU/PMR has always been aware of the high costs of treatment of individuals, the preventable nature of several of the injuries that lead to disability, the inappropriateness of some of the training within the institution and the problem of accessibility for the majority of disabled people in the community. We are also aware that in a tertiary care centre, disabilities due to hearing, seeing, difficulty in learning and development are taken care of by different departments and wholistic care is hard to provide. Some of these issues were discussed with people with disabilities from the local communities who sought treatment at LCECU. This led to the idea of setting up a CBR project

Aims objectives The aim of our CBR project is to empower people with disability to achieve their potential through the active participation of their family and wider community, thus transforming the community to be a better place for PWD. Principles Volunteers or Local Supervisors In order to base the rehabilitation in the community, it was imperative to select volunteers from among the community. Volunteers (Local Supervisors-LS) were selected in consultation with the community. Educative model Rather than a purely medical or social model, we attempted a judicious mixture of both, through an educational model. This envisages the creation of trained resource people (LS) in the community who can then utilise the skills and knowledge acquired to help PWD. Awareness creation Community awareness was focused on prevention of disabilities, eliminating social stigma and how to cope with the PWD in the community. Utilizing local resources The primary emphasis was to harp on locally available resources wherever possible, eg; innovative devices, mobility aids as well as support from local people. Need Based Approach If the community and people with disability are to be empowered, it is crucial to ascertain the needs as perceived or felt by them. Any attempt that fails to take this into consideration is bound to become a futile exercise. Solutions that appear good to project personnel may fail because it has not addressed the felt need of PWD. A young disabled person sought help from the rehabilitation team. The deformities, contractures and other medical problems were quickly identified by the team. Surgical correction of deformities and corrective appliances were provided. The team felt with all these expensive interventions the disabled person could lead a productive life. Much to the dismay of the team he continued to be dissatisfied with the outcome. His expectations from the rehabilitation team was to get some support services to start a shop i.e. Vocational Rehabilitation. This felt need was not recognised initially as attention was focused entirely on the deformities. Subsequently, he was able to start a shop as a vocation, and he put away the appliances, and was quite satisfied on achieving his felt needs

ACTIVITIES Defining the Community or Area The community and the target group for CBR should be clearly defined at the outset of any programme. This could be decided based on proximity to available resources, requests from the community, availability of infrastructure and possibility of inter linking with existing services either GO or NGO. In our project we chose the poorer area of the Vellore town (a population 20,000) focusing on people with disability. This is already part of the area served by LCECU, within easy physical reach. The existing links of the LCECU with the local community facilitated the process of CBR. Entering the Community To initiate the CBR process, the community must become aware not only of what the needs and problems of the disabled are, but also be confident that there are solutions possible within the community. This awareness may arise within the community through one or a group of its members. More often it occurs because of the efforts of the third person or a group who acts as facilitator. (which was the role of our team). In this case, getting to know the community and gaining their trust is the crucial first Discussions with the community leaders step for initiating CBR. This can be done in many ways.

When we started the initial visits to the community we spent time talking to people. We had tea in the local teashops and chatted with people around there. The patients and their relatives from the LCECU, who lived in these communities, played a facilitative role for establishing initial contacts in the community. In this way, we were able to identify and meet some of the local leaders. We also made contacts with leaders of youth groups, schoolteachers and womens groups. The purpose of the Discussions with the community in progress project was explained and discussed with them. 6

Once rapport and links were established, public meetings were held. These meetings were held wherever there was a place available like street corners, temple premises, playground, under the trees, etc. They were informal and interactive. Issues, priorities, and fears of all were openly voiced and discussed. In many communities we visited, we found that peoples priorities were different from ours. Many communities felt that the health and development needs of the non-disabled were not being met and should have priority over the needs of PWD, who were anyway less productive. However with discussions some communities understood that addressing the needs of PWD would eventually lead to overall development within the community. eg. an elderly person with stroke, if rehabilitated, would liberate the care givers to carry out other productive functions. There was scope for the PWD to have a productive role in their home or community. In our project, these meetings generated a lot of discussion inspiring some people to volunteer their time, effort and service for their neighbours in the community. The educational and training approach rather than direct service delivery approach seemed a novel idea that aroused their curiosity and interest. Among the communities who were willing to participate in this educative model, further discussions were held to select volunteers for the project. Selection of volunteers Although all the people who volunteer are deeply committed and want to help, there could be practical difficulties for some of them. Further discussions were conducted highlighting their aptitude, ability and availability for this task. However it needs to be mentioned that there were communities who were not keen on projects focused on the development of the disabled people. No volunteers came forward for the programme from these communities. We held several discussions with volunteers and their families as well as with local leaders before the selection. It was decided to have one volunteer for every 2,000 people whom we call a Local Supervisor (LS). After discussions on the nature of the volunteers work, some volunteers Any disabled here - LS found that they could not spare time or that they could not cope due to poor literacy skills or aptitude. We do have two volunteers who cannot read or write, but were chosen for their abundant enthusiasm. Those who were not selected were encouraged to continue to be a part of the wider support network and have been helpful in mobilizing resources, joining in activities like health awareness camps in their areas.

Eligibility Criteria for Local Supervisors: In our project, we felt that LS should o be from the local community o be able to read and write in local language. o have family support o have time to spare for community activities (2-3 hours a day) o have positive attitude towards PWD and community development o have experience in dealing with disability or could be disabled persons themselves. Training (The WHO manual for CBR formed the basis for the training programme.) The aim of training was to create awareness, enhance knowledge and provide skills needed so that the volunteers and PWD could be effective agents of change in the community. Through the training the volunteers and the people with disability were empowered and enabled to facilitate the process of Community Based Rehabilitation.

Training the LS through demonstrations

The learning process took place within the community as well as in the institutions outside the community. The trainees and trainers were both a part of the learning process. We found the WHO manual translated into the local language to be user friendly, practical and effective. LS with resource person at a lecture Trainers The project staff, people with appropriate technical skills from the secondary and tertiary care centres, NGOs, Government agencies, PWD, medical specialists and educators were involved as trainers.

Methodology Various methods were used for the training of the local supervisors. Lectures, discussions, role plays, case studies, field visits, demonstrations, practical work, participation in reviews were all opportunities for training. The modules of the WHO manual were used one at a time with a mix of theory and practical work relating to each module. The volunteers were Identifying disability in community by LS encouraged to present existing local Problems (or situations) and suggest relevant solutions to solve them with available resources. Training also focused on communication, listening skills, and how to create rapport in the family and community. It was interesting to find that the volunteers were able to spell out the basic principles involved in communication and listening from their practical life experience, although they were

Learning through games unaware that they possessed such skills and were unsure of how to apply them formally. The field surveys were a sensitisation process for the whole team re garding problems faced by PWD in the real world. This stimulated the enthusiasm and motivation of the volunteers and trainers. Solutions to problems were planned along with the PWD, their families, project team and experts. Positive results

Learning through role play by LS gave rise to further motivation and failure to solve the problems led to repeating the process, looking for the causes of failure and finding new solutions. With time and experience, the volunteers developed confidence and often project staff drew inspiration, and learned many valuable lessons from them and the approaches that they used.

Sharing experiences by LS 9

(e.g. As a part of identifying people with difficulty in seeing, one of the Local Supervisors suggested that inability to pick out the stones from the grains of rice could be as effective a method, to detect decrease in vision as testing with formal charts.) The problem solving methodology was found to be an excellent educative model. The Local Supervisor would identify the problem faced by the PWD with their help. Possible solutions were discussed with other project staff and resource persons, using the WHO manuals as resource material. The suggested interventions were implemented after discussions with the persons concerned and their family members. Problems encountered during intervention were solved locally, or brought back for discussion, during review meetings. Some problems were complex enough to warrant field visits by the project staff including the medical team. During these visits, the team and the persons with disability together analysed the situation and suggested interventions including referral to secondary and tertiary centres as appropriate. Recognising that a certain number of PWD do need intervention at secondary/tertiary setup, the team planned to use the already existing facilities and Field visit by secondary & tertiary team infrastructure to make this care available as and when needed. This care would also be provided to other people in the community who had medical needs, through the Volunteers, thus strengthening their image in the community. Sometimes the problem needed the help of the Government systems or of the local leaders. (e.g. Linking persons with DOTS scheme for Tuberculosis; Facilitating PWD to get ID card from the District Disability Rehabilitation Office) School Education Schools in the community served as a platform to sensitise the children regarding disability related issues. This increased awareness of disability created through dramas, role-plays, competitions and skits necessitated involvement of teachers and parents and thereby this percolated into the larger community.

Disability awareness in class rooms

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Difficulties encountered The Difficulties encountered so far were to get suitable volunteers from certain areas. There were no responses from 5 slum areas even after community meeting and repeated attempts to motivate them to take on this challenge. In these areas it was observed that community felt that intervention for disabled was not a priority at present. Efforts are continuing to convince these communities about the significant role of LS and CBR.

LESSONS FROM THE FIELD Role of camps In almost all the communities there was a demand to conduct a health/ medical camp. In our understanding, medical camps were not part of the strategy towards establishing CBR. However since this was a persistent request across all the communities, we explored this approach. We realised that holding camps would enhance community contact, help us to Health education integral part of the camp better understand their needs and problems and enhance the Local Supervisors status within their community. Seeing patients within the community rather than in a doctors office, helped to remove some of the barriers set up by professionalism. The exposure to the reality of the lives of people in the slums was an eye opener (education) for most of the professionals. The community felt that the professionals were more accessible to them and were able to see them as advocates for their development. During the planning the principles of the educative model were kept in mind and screening for diseases like Under nutrition/ Hypertension/Diabetes Mellitus/Obesity were carried out as well as Health Education on a variety of health issues conducted through the health exhibition/Video shows that were organised as a part of the camp. The community was involved in the planning and organisation and the leaders and young people played an active role, helping to set up the venue, streamlining the patients and providing other infrastructural support. So these camps have given us an opportunity to strengthen links and provided a window into some aspects of the life within the community

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Eye Camps Difficulty in seeing was a major problem within the community, encountered by the local supervisors. As they began to use the module on difficulty in seeing it became apparent that many of the visually challenged persons needed the help of the specialists. Contacts were made with the eye department and links were made to their ongoing community programmes for those with poor vision. Eye Camps were organised in these areas and people with difficulty seeing were referred for appropriate treatment including correction of refractive errors, or surgery for cataract and so on. The local supervisors were the links between their communities and the LS at an eye camp with specialists staff of the Ophthalmology department. The local supervisors gained knowledge skill and confidence in using the manual for dealing with persons with difficulty seeing through these approaches. EVALUATION The term evaluation is frequently used in planning and management circles. However though commonly used, it is not well understood and less frequently practiced. Evaluation is a systematic way of learning from experience through critical analysis so that the successes can be retained, replicated and the mistakes/failures can be avoided in the future. Evaluation should be part of the process of implementing the programme and should be critically looked at during the planning itself. Concurrent or ongoing evaluation takes place on a day to day basis. The programme however must ultimately achieve what it set out to do. It would be of little use if all the steps in training the LS and their field activities were carried out according to the plan, but the QOL of the PWD did not change at all. So all evaluation must also have a terminal component after which the next stage of the programme can begin. Since evaluation calls for objective and critical analysis, it is important to have adequate information to do this. Hence, there is a need to develop good quality information on an ongoing basis. Surveys are also needed to develop indicators that will clearly measure the outcomes that are expected.

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Discussion on overcoming architectural barriers a need identified by the trainee training focused on areas identified for further training. Through weekly review with project staff the process of programme were evaluated on a regular basis and programme plans modified or changed accordingly. (eg. It was decided to make a bar chart of LS attendance for the training each month and use this as a motivating tool to achieve excellence)

In our project, we carried out an ongoing evaluation through out the project. Through pre and post tests the knowledge and attitude of the Local Supervisors during the training were assessed. The LS gave feedback on the content and methods of training and all these information was used to improve the training programme. The LS were assessed during field visits by the staff and ongoing

Each special programme like a health camp, eye camp or school awareness had a post evaluation and the feedback was utilized to improve the next activity. (eg. As part of health screening camp, it was decided to keep one or two wheel chairs and a hurdle for the public to experience the disabling Need based training LS condition in a wheel chair) learning step climbing We used both quantitative and qualitative information in our project. We set up data collection systems through which we could get information on the population, numbers of PWD, types of disabilities and so on. Through regular review meetings, the team including the local supervisors critically looked at these data. Community members and PWD were not regular members of this process. This is a weakness in this project. Ongoing case studies on PWD gave us information that helped us to assess QOL as well as get feedback from the PWD and their families. In any project or intervention there can be short team outcomes and long term ones. In a CBR project the long-term outcomes are probably more important but when the interventions are current, only short-term evaluation will be possible. Therefore it is important that the community, including the PWD develop skills in evaluation. Usually evaluation processes use quantitative date. In programmes like CBR however when we seek to improve the QOL, both quantitative and qualitative information/data become important. 13

SUSTAINABILITY Sustainability is the ability of a project or programme to continue to address needs as long as the needs exist. Often external support may be needed to initiate a programme, but if it is sustainable, the programme will continue even after external support is withdrawn. Usually sustainability is seen only in financial terms. While this is an important aspect, it certainly is not the whole. There are many other factors that contribute to the programme continuing to address needs, or to its closing, when the external support is withdrawn. Very often, the programme may function differently, but will continue to address needs as well or even better than before. It is important to recognise and build in the element of sustainability before the external support is removed. We developed the education model with the hope that trained resources who have particular knowledge and skill (whether Local Supervisor, School Children, Family, Community) and who will continue to live in the community will ensure some degree of sustainability. The secondary and tertiary care centers would continue to be a resource for the PWD and the links made will hopefully continue even if there is no direct and regular contact as during the period of project operation. Since the volunteer nature of the LS is important for the success of the programme, remuneration has not been projected as an important component of the project. The LS are given many skills which they acquire free of charge. A scholarship was given to the volunteers during the training period to offset expenses involved towards the training. In our project we decided Rs.500/per month as the scholarship amount. It is evident that the project has an educational value as it trains the community volunteers to help the disabled and offer services to them. This also indirectly will benefit a larger population because it serves as a teaching module for the under graduate, postgraduate and allied health professional courses, there by sensitising the students and younger generation to the needs of the disabled in the community. This will ensure long term beneficial changes in the community through training local supervisors who will act has resource persons and agents for change to improve the quality of life for people with disability. However, it is not possible at this time to say if this programme will be sustainable or not in the long term or what form it will take eventually, once the high input that is currently present is withdrawn. Time will tell.

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ACKNOWLEDGEMENT 1. Government of India, Directorate General of Health Services and World Health Organization for funding this project on Community Based Rehabilitation conducted jointly by the department of physical medicine and Rehabilitation and the Low Cost Effective Care Unit of Christian Medical College, Vellore. 2. People With Disability and their Community in Vellore Town for allowing us to learn from them.

3. Local Supervisors for all the people who volunteered to be part of this process.

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