NMH Resources CBR Vellore Experience

8/3/2019 NMH Resources CBR Vellore Experience

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COMMUNITY BASED REHABILITATIONTHE VELLORE EXPERIENCE

Department of Physical Medicine and Rehabilitation&

Low Cost Effective Care UnitChristian Medical College, Vellore, India

(Supported by Government of India and World Health Organization)



COMMUNITY BASED REHABILITATIONAN URBAN EXPERIENCE

FOREWORD

This document describes the experience of a team of professionals,community volunteers and people with disability in an urban area inimplementing 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. Italso describes their experience in enhancing awareness of issues related todisability prevention and its management in the local communities.

The team used the WHO Manual on Disability as the basic guide, addingfrom 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 community-based rehabilitation. We hope that the sharing of our experiences will enableothers to take up the challenge to work for and with people with disability intheir communities to improve their quality of life.

COMMUNITY BASED REHABILITATION

The general concept about CBR is that it is a quick, cheap episodicdistribution of some appliances for physically disabled people living in a ruralarea. Many government as well as non government agencies, with all goodintentions to rehabilitate disabled people, resort to quick fix solutions, with nolong lasting impact in the community. Rehabilitation, considered as functionalrestoration, 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 thecommunity as a whole, empowering the disabled persons to achieve their complete potential, enabling them to integrate into the fabric of the communityand make decisions for themselves. This could also involve dealing with bothphysical and architectural barriers within the community. Empowering thedisabled persons may involve medical, social, vocational and educationalinputs. Enriching the community involves education, creating awareness,providing basic resources, changing attitudes and building constructiveapproaches towards disability and related problems.

WHY CBR?

Institutional Rehabilitation provides excellent services to address the problemsof individual disabled persons and is often available only for a small number ata very high cost. Institutional overheads and other major infrastructuralexpenses make the process very expensive. Moreover, the endeavours in aninstitution are often out of context to the felt needs of the disabled person, andthus falls short of their expectations. The fact that this person comes from aparticular background and cultural setting is often ignored. The institutionalculture is imposed on the disabled person and they are often expected to

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function as advised by the “experts”. In an institutional rehabilitationprogramme, the community is not linked with the process. Hence, when thedisabled persons return home, it may become difficult for them to integrateinto their community.

Many institutions follow community-oriented approaches. In this method of

approach, the services are provided at the level of community through anoutreach clinic or camp based approach. The programme is guided by theinstitution and directed by the availability of the resources. The patients andcommunity are only the beneficiaries. e.g. as and when appliances likewheelchair, tricycle, or calipers become available, they get distributed whether it is appropriate or not. However, these strategies are inadequate to respondto the needs and expectations of the disabled and their community.Rehabilitation based in the community ensures community participation, useslocally available resources and learns from existing innovative approaches inthe 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 inthe community itself, usually with locally available resources. CommunityBased Rehabilitation is defined as a strategy within community development,for rehabilitation, equalization of opportunities and social integraton of allpeople with disabilities. Community Based Rehabilitation is implementedthrough the combined efforts of the disabled people themselves, their familiesand 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 withdisabilities – a joint position paper)

Accomplishing this involves creation of awareness in the community regardingdisability, value of disability prevention, and rehabilitation methods. In order tobase the rehabilitation in the community it is of prime importance to inspire thecommunity and recruit volunteers for this task. This is not an easy process. Absolute altruism is against the basic principle of biological evolution, a factwhich needs to be considered, whereas recruiting people for a remunerationwill often lead to building up a group of people who are more interested inperks than the task. A healthy mix of altruism combined with practicality is acrucial ingredient in community-based rehabilitation. An education and trainingmodel was found to be a compromise approach, which is likely to succeed, aswill be explained subsequently. The volunteers need to be trained to identifyand intervene appropriately to deliver rehabilitation services in the community.

As Volunteers gain expertise in managing 70% of disability problems, they willalso encounter 30% of the difficult problems related to disability, which theyare not able to deal with and solve within the community. The relevance of secondary and tertiary care centers, which are linked to CBR, thereforebecomes quite crucial at this juncture. These links help the CBR workers(local volunteers) to deal with difficult problems, learn from them, and therebybecome confident in the whole process of CBR through their interactions withdisabled people, families and community as well as trainers from secondaryand tertiary centers. Thus, a CBR set-up established in the community

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comprising of local people, who are supported by secondary and tertiarycenters for help as and when difficulties are encountered, is an effectiveapproach, which maintains and sustains the process of CBR. Theseinteractions between the local community and the secondary and tertiarycenters are mutually beneficial. The secondary and tertiary care centers get afeel for the ground realities, and the community gets the benefit of the

knowledge and expertise of these centers. Together they can then evolvesolutions 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 beunnatural and artificial. Therefore, solutions mooted from polarized viewpointsare 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 andrehabilitation, 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 PMRhave been working with severely disabled patients and have developed anexpertise 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 asreferrals to the tertiary care centers as needed. Primary care has not beendeveloped 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 thatlead to disability, the inappropriateness of some of the training within theinstitution and the problem of accessibility for the majority of disabled people

in the community. We are also aware that in a tertiary care centre, disabilitiesdue to hearing, seeing, difficulty in learning and development are taken careof by different departments and wholistic care is hard to provide.

Some of these issues were discussed with people with disabilities from thelocal communities who sought treatment at LCECU.

This led to the idea of setting up a CBR project

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Aims objectives

The aim of our CBR project is to empower people with disability to achievetheir 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 SupervisorsIn order to base the rehabilitation in the community, it was imperative to selectvolunteers 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 judiciousmixture of both, through an ‘educational model’. This envisages the creation of trained resource people (LS) in the community who can then utilise the skillsand knowledge acquired to help PWD.

Awareness creationCommunity awareness was focused on prevention of disabilities, eliminatingsocial stigma and how to cope with the PWD in the community.

Utilizing local resourcesThe primary emphasis was to harp on locally available resources wherever possible, eg; innovative devices, mobility aids as well as support from localpeople.

Need Based ApproachIf the community and people with disability are to be empowered, it is crucialto ascertain the needs as perceived or felt by them. Any attempt that fails totake this into consideration is bound to become a futile exercise.

Solutions that appear good to project personnel may fail because it has notaddressed the felt need of PWD.

A young disabled person sought help from the rehabilitation team. Thedeformities, 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 therehabilitation team was to get some support services to start a shop i.e.Vocational Rehabilitation. This felt need was not recognised initially asattention was focused entirely on the deformities. Subsequently, he was ableto start a shop as a vocation, and he put away the appliances, and was quitesatisfied on achieving his felt needs

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ACTIVITIES

Defining the Community or Area

The community and the target group for CBR should be clearly defined at theoutset of any programme. This could be decided based on proximity to

available resources, requests from the community, availability of infrastructureand possibility of inter linking with existing services either GO or NGO.

In our project we chose the poorer area of the Vellore town (a population20,000) focusing on people with disability. This is already part of the areaserved by LCECU, within easy physical reach. The existing links of theLCECU 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 possiblewithin the community. Thisawareness may arise withinthe community through oneor a group of its members.More often it occursbecause of the efforts of thethird person or a group whoacts as “facilitator”. (whichwas the role of our team). Inthis case, getting to knowthe community and gainingtheir trust is the crucial first

step for initiating CBR. Thiscan be done in many ways.

Discussions with the community leaders

When we started the initial visits to the community we spent time talking topeople. We had tea in the local teashops and chatted with people aroundthere. The patients and their relatives from the LCECU, wholived in these communities,played a facilitative role for establishing initial contacts in

the community. In this way, wewere able to identify and meetsome of the local leaders.We also made contacts withleaders of youth groups,schoolteachers and women’sgroups. The purpose of theproject was explained anddiscussed with them.

Discussions with the community in progress

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Once rapport and links were established, public meetings were held. Thesemeetings were held wherever there was a place available like street corners,temple premises, playground, under the trees, etc. They were informal andinteractive. Issues, priorities, and fears of all were openly voiced anddiscussed.

In many communities we visited, we found that people’s priorities weredifferent from ours. Many communities felt that the health and developmentneeds of the non-disabled were not being met and should have priority over the needs of PWD, who were anyway less productive. However withdiscussions some communities understood that addressing the needs of PWDwould eventually lead to overall development within the community. eg. anelderly person with stroke, if rehabilitated, would liberate the care givers tocarry out other productive functions. There was scope for the PWD to have aproductive role in their home or community. In our project, these meetingsgenerated a lot of discussion inspiring some people to volunteer their time,effort and service for their neighbours in the community. The educational andtraining approach rather than direct service delivery approach seemed a novel

idea that aroused their curiosity and interest. Among the communities whowere willing to participate in this educative model, further discussions wereheld to select volunteers for the project.

Selection of volunteers

Although all the people who volunteer are deeplycommitted and want to help, there could bepractical 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 therewere communities who were not keen onprojects focused on the development of thedisabled people. No volunteers came forward for the programme from these communities.

We held several discussions with volunteers andtheir families as well as with local leaders beforethe selection. It was decided to have onevolunteer for every 2,000 people whom we call aLocal Supervisor (LS). After discussions on thenature of the volunteer’s work, some volunteers

found that they could not spare time or that theycould not cope due to poor literacy skills or aptitude. We do have two volunteers who cannot read or write, but werechosen for their abundant enthusiasm. Those who were not selected wereencouraged to continue to be a part of the wider support network and havebeen helpful in mobilizing resources, joining in activities like health awarenesscamps in their areas.

Any disabled here - LS

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Eligibility Criteria for Local Supervisors:

In our project, we felt that LS shouldo be from the local communityo 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 developmento 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 tocreate awareness, enhanceknowledge and provide

skills needed so that thevolunteers and PWD couldbe effective agents of change in the community.Through the training thevolunteers and the peoplewith disability wereempowered and enabled tofacilitate the process of Community BasedRehabilitation.Training the LS through demonstrations

The learning process took placewithin the community as well as inthe institutions outside thecommunity. The trainees andtrainers were both a part of thelearning process. We found theWHO manual translated into thelocal language to be user friendly,practical and effective.

TrainersThe project staff, people with appropriate technical skills from the secondaryand tertiary care centres, NGOs, Government agencies, PWD, medicalspecialists and educators were involved as trainers.

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Methodology

Various methods were used for thetraining of the local supervisors.Lectures, discussions, role plays,case studies, field visits,

demonstrations, practical work,participation in reviews were allopportunities for training. Themodules of the WHO manual wereused one at a time with a mix of theory and practical work relating toeach module. The volunteers wereencouraged to present existing local

Identi in disabilit in communit b LS

Problems (or situations) and sugavailable resources.

Training a

Learnin throu h role la b LS

Sharing experiences by LS

gest relevant solutions to solve them with

lso focused on

ommunication, listening skills,

gave rise to further motivation andfailure to solve the problems led to

failure and finding newolutions.

and theapproaches that they used.

cand how to create rapport in thefamily and community. It wasinteresting to find that thevolunteers were able to spellout the basic principles involvedin communication and listeningfrom their practical lifeexperience, although they were

unaware that they possessed suchskills and were unsure of how toapply them formally. The fieldsurveys were a sensitisationprocess for the whole team regarding problems faced by PWD inthe real world. This stimulated theenthusiasm and motivation of thevolunteers and trainers. Solutionsto problems were planned alongwith the PWD, their families, projectteam and experts. Positive results

repeating the process, looking for thecauses of

Learning through games

s

With time and experience, thevolunteers developed confidenceand often project staff drewinspiration, and learned manyvaluable lessons from them

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(e.g. As a part of identifying people with difficulty in seeing, one of the LocalSupervisors 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 testingwith formal charts.)

The problem solving methodology was found to be an excellent “educative”

model. The Local Supervisor would identify the problem faced by the PWDwith their help. Possible solutions were discussed with other project staff andresource persons, using the WHO manuals as resource material. Thesuggested interventions were implemented after discussions with the personsconcerned and their family members. Problems encountered duringintervention were solved locally, or brought back for discussion, during reviewmeetings.

Some problems were complex enough to warrant field visits by the projectstaff including the medical team.During these visits, the team and thepersons with disability together

analysed the situation and suggestedinterventions including referral tosecondary and tertiary centres asappropriate. Recognising that acertain number of PWD do needintervention at secondary/tertiarysetup, the team planned to use thealready existing facilities andinfrastructure to make this careavailable as and when needed. This

care would also be provided to other people in the community who hadmedical needs, through the Volunteers, thus strengthening their image in thecommunity. Sometimes the problem needed the help of the Governmentsystems or of the local leaders. (e.g. Linking persons with DOTS scheme for Tuberculosis; Facilitating PWD to get ID card from the District DisabilityRehabilitation Office)

Field visit b secondar & tertiar team

School EducationSchools in the communityserved as a platform tosensitise the children regardingdisability related issues. Thisincreased awareness of

disability created throughdramas, role-plays,competitions and skitsnecessitated involvement of teachers and parents andthereby this percolated into thelarger community.

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Difficulties encountered

The Difficulties encountered so far were to get suitable volunteers from certainareas. There were no responses from 5 slum areas even after communitymeeting and repeated attempts to motivate them to take on this challenge. Inthese areas it was observed that community felt that intervention for disabled

was not a priority at present. Efforts are continuing to convince thesecommunities about the significant role of LS and CBR.

LESSONS FROM THE FIELD

Role of camps

In almost all the communitiesthere was a demand to conducta health/ medical camp. In our understanding, medical camps

were not part of the strategytowards establishing CBR.However since this was apersistent request across all thecommunities, we explored thisapproach. We realised thatholding camps would enhancecommunity contact, help us tobetter understand their needs

and problems and enhance the Local Supervisor’s status within their community. Seeing patients within the community rather than in a doctorsoffice, helped to remove some of the barriers set up by professionalism. Theexposure 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 theprofessionals were more accessible to them and were able to see them asadvocates for their development. During the planning the principles of theeducative model were kept in mind and screening for diseases like Under nutrition/ Hypertension/Diabetes Mellitus/Obesity were carried out as well asHealth Education on a variety of health issues conducted through the healthexhibition/Video shows that were organised as a part of the camp. Thecommunity was involved in the planning and organisation and the leaders andyoung people played an active role, helping to set up the venue, streamliningthe patients and providing other infrastructural support. So these camps have

given us an opportunity to strengthen links and provided a window into someaspects of the life within the community

Health education – integral part of the camp

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Eye Camps

Difficulty in seeing was a major problem within the community, encounteredby the local supervisors. As they began to use the module on ‘ difficulty inseeing’ it became apparent that many

of the visually challenged personsneeded the help of the specialists.Contacts were made with the eyedepartment and links were made totheir ongoing community programmesfor those with poor vision. Eye Campswere organised in these areas andpeople with difficulty seeing werereferred for appropriate treatmentincluding correction of refractive errors,or surgery for cataract and so on. Thelocal supervisors were the links

between their communities and thestaff of the Ophthalmology department.The local supervisors gainedknowledge skill and confidence in using the manual for dealing with personswith difficulty seeing through these approaches.

LS at an eye camp with specialists

EVALUATION

The term evaluation is frequently used in planning and management circles.However though commonly used, it is not well understood and less frequentlypracticed. Evaluation is a systematic way of learning from experiencethrough critical analysis so that the successes can be retained, replicated andthe mistakes/failures can be avoided in the future.

Evaluation should be part of the process of implementing the programme andshould be critically looked at during the planning itself. Concurrent or ongoingevaluation takes place on a day to day basis. The programme however mustultimately achieve what it set out to do. It would be of little use if all the stepsin training the LS and their field activities were carried out according to theplan, but the QOL of the PWD did not change at all. So all evaluation mustalso have a terminal component after which the next stage of the programmecan begin. Since evaluation calls for objective and critical analysis, it isimportant to have adequate information to do this.

Hence, there is a need to develop good quality information on an ongoingbasis. Surveys are also needed to develop indicators that will clearly measurethe outcomes that are expected.

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In our project, we carriedout an ongoingevaluation through outthe project. Through preand post tests theknowledge and attitude

of the Local Supervisorsduring the training wereassessed. The LS gavefeedback on the contentand methods of trainingand all these informationwas used to improve thetraining programme. TheLS were assessedduring field visits by thestaff and ongoing

training focused on areas identified for further

training.

Discussion on overcoming architectural barriers

– a need identified by the trainee

Through weekly review with project staff the processof programme were evaluated on a regular basisand programme plans modified or changedaccordingly. (eg. It was decided to make a bar chartof LS attendance for the training each month anduse this as a motivating tool to achieve excellence)

Each special programme like a health camp, eyecamp or school awareness had a post evaluationand the feedback was utilized to improve the nextactivity. (eg. As part of health screening camp, itwas decided to keep one or two wheel chairs and ahurdle for the public to experience the disablingcondition in a wheel chair)

We used both quantitative and qualitative information in our project. We setup data collection systems through which we could get information on thepopulation, numbers of PWD, types of disabilities and so on. Through regular review meetings, the team including the local supervisors critically looked atthese data. Community members and PWD were not regular members of thisprocess. 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 feedbackfrom the PWD and their families.

Need based training – LS

learning step climbing

In any project or intervention there can be short team outcomes and long termones. In a CBR project the long-term outcomes are probably more importantbut when the interventions are current, only short-term evaluation will bepossible. Therefore it is important that the community, including the PWDdevelop skills in evaluation. Usually evaluation processes use quantitativedate. In programmes like CBR however when we seek to improve the QOL,both quantitative and qualitative information/data become important.

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SUSTAINABILITY

Sustainability is the ability of a project or programme to continue to addressneeds 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 evenafter external support is withdrawn. Usually sustainability is seen only infinancial terms. While this is an important aspect, it certainly is not the whole.There are many other factors that contribute to the programme continuing toaddress needs, or to it’s closing, when the external support is withdrawn. Veryoften, the programme may function differently, but will continue to addressneeds as well or even better than before.

It is important to recognise and build in the element of sustainability before theexternal support is removed. We developed the “education” model with thehope 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 directand regular contact as during the period of project operation.

Since the volunteer nature of the LS is important for the success of theprogramme, remuneration has not been projected as an important componentof 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 offsetexpenses 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 thecommunity volunteers to help the disabled and offer services to them. Thisalso indirectly will benefit a larger population because it serves as a teachingmodule for the under graduate, postgraduate and allied health professionalcourses, there by sensitising the students and younger generation to theneeds of the disabled in the community. This will ensure long term beneficialchanges in the community through training local supervisors who will act hasresource 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, oncethe 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 WorldHealth Organization – for funding this project on Community BasedRehabilitation conducted jointly by the department of physical medicine

and Rehabilitation and the Low Cost Effective Care Unit of ChristianMedical 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 thisprocess.

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NMH Resources CBR Vellore Experience

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