COMMUNITY BASED REHABILITATION

AWKNOLEDGEMENT
I would like to acknowledge the contribution of my guides Ms. Anita and Ms Geeta whose meticulous and organized planning of our course content gave me the confidence to attempt all the academic requirements of my course. I would also like to thank the rest of our teaching staff who crammed enough knowledge into our contact programmes to make them concise and practical. But I would primarily like to thank the people of Nithari village who not only tolerated my intrusion into their lives, but also actively co-operated with me and trusted me not to harm them with my hit and trial methods.

(JASPREET KAUR)

WHAT IS COMMUNITY BASED REHABILITATION

CBR is a systematized approach within general community development whereby Persons with Disabilities (PWDs) are enabled to live a fulfilling life within their own community, making maximum use of local resources and ensuring enhanced awareness in the community of its roles and responsibility in ensuring the inclusion and equal participation of PWDs. In the process, PWDs are made aware of their own role and responsibility, equipped to exercise their rights and play a proactive role in addressing the issues affecting their lives and that of the community.

DEFINITIONS
According to three United Nation Agencies, ILO, UNESCO, and the WHO, CBR may be defined, as a "strategy within community development for the rehabilitation, equalization of opportunities, and social integration of all people with disabilities. According to Helander:CBR is a strategy for enhancing the quality of life of disabled people by improving services delivery by providing more equitable opportunities and by promoting and protecting their human rights. According to WHO CBR involves measure taken at the community level to use and build on the resources of the community. Including impaired, disabled and the handcrafted persons themselves, their families and their community as a whole. Community based rehabilitation (CBR) is a response, in both developed and developing countries, to the need for adequate and appropriate rehabilitation services, to be available to a greater proportion of the disabled population. CBR is implemented through the combined efforts of disabled people themselves, their families

and communities, and the appropriate health, education, vocational and social services" (WHO, 1994)

NEED FOR CBR

Some estimates say that almost 70-80% of Indians with disabilities live in rural areas while most of the country's rehabilitation centers are situated in urban areas. To transport the disabled person to these centers for appraisal, treatment or training is an expensive process, involving not only the cost of travel but also the loss of daily wage for the escort. Segregation of the disabled into protected environments and special institutions is both dehumanizing and expensive. Government intervention is also inadequate because the care of the disabled comes somewhat low on their agenda when compared with the more pressing problems. The rural disabled are at a further disadvantage.Their access to resources, employment opportunities and rehabilitation is severely restricted. They often comprise the most neglected, marginalized of their community. They are usually denied education and the right to enjoy normal social interactions and relationships. Families rarely take the trouble to educate their disabled daughters and disabled women are not given a change to find fulfillment in marriage and motherhood. Employment opportunities for the uneducated and untrained disabled are so limited that the disabled person is considered a burden on the family, a drain on their meager finances. Keeping the special problems of the rural disabled in mind, and given the increased skepticism about the efficacy of institutional care, there has in the last decade or so, been a shift to community based rehabilitation (CBR) in India, as elsewhere in the developing world. CBR is a process of motivating and providing inputs-which could be medical, technical or social to the community to take care of its disabled. To put it very simply, it is a system of enabling the rural disabled in their community and through their community.

HISTORY
IBR v/s CBR IBR - Institution based rehabilitation Rehabilitation service for people with disabilities are primarily institutional in nature, which are located in major cities. Hence, In order to obtain necessary services cased in institutions, it is assumed that people with disabilities must first be aware of the facilities and services; and second be able to access them whether this access is geographical or financial and service; and second be able to access them whether this access is geographical or financial. Certain problems associated with institution based rehabilitation service are first a majority of people with disabilities do not understand that rehabilitation service exist that can help their disabilities; second they do not know where these service are located and how to access them and third they do not even know what help they. Apparently, this model of rehabilitation was felt to be inadequate to meet the needs of people with disabilities and the community. Therefore with the growing realization of the magnitude of the problem of disability, the institution based model of rehabilitation (IBR) is often criticized for being accessible to a small section of the community and inaccessible in underprivileged and rural areas. The very persons most in need of help are the least likely to seek out the services. Hence CBR In CBR, the disabled person, the family, the community, and health professionals collaborate to provide needed services in a noninstitutional setting, and in an environment or community where services for disabled persons are seriously limited or totally absent. Its essential feature is its focus on partnership and community participation. In the beginning of the 1960's, efforts to establish rehabilitation centers in developing countries had taken hold in urban centers, but failed to provide support and assistance to disabled people in rural areas throughout the world. The response of world aid organizations was to shift funding from city-based hospitals to rural community programs. The first CBR pilot projects were launched in the 1970's,

CBR on a full scale was developed in the 1980s, to give people with disabilities access to rehabilitation in their own communities using predominantly local resources. A 2004 joint ILO, UNESCO and WHO paper repositioned CBR as a strategy for rehabilitation, equalization of opportunity, poverty reduction and social inclusion of people with disabilities.

In order to understand CBR one needs to look at its various components. These are : The community Rehabilitation The family Community resources

THE COMMUNITY
According CBR Working group in the CBR context community means a group of people with common interests who interact with each other on a regular basis. In general terms, a community is a sub-set of society but longer than a family. It constitutes a group of people, living together in social association, harmony and understanding, generally having a common goal, which fosters a sense of belonging. They share their views on their political, cultural Economical and social ideology with each other. Community, in general, comprises of family members, neighbors, friends, workers, local administrative authorities, local transport authorities, postman, school teacher, village headman, local revenue officials, hereby shopkeeper, local development agencies, local welfare agencies and other such people or officials. The community needs to protect its disabled members to ensure that they are not deprived of their human rights. Disabled community members and their families should be involved in all discussions and decisions regarding services and opportunities provided for them. The community will need to select one or more of its members to undergo training in order to implement the programme.

REHABILITATION
The dictionary meaning of rehabilitation is to return or restore to previous state of or condition. In the other words rehabilitation signifies restoring any individual to social, functional, economic status he/she enjoyed before the onslaught of impairment. It refers to all the measures, which needed to be taken to bring the individual to his/her functional capabilities, which he possessed before his impairment. According to ILO Rehabilitation involves the combined and coordinated used medical, social, educational and vocational measures for training or retraining the individual to the highest possible level of functional ability. Rehabilitation thus includes not only the training of disabled people but also intervention in the general society system of society, adaptations of the environment and protection of human rights. Disabled people should have the same rights to a life dignity as others. Special attention may be needed to ensure access to health, social services education, work opportunities, housing, transportation, information culture, social life including sports and recreational facilities and representation and full political involvement in all matters of concern to them. In the general sense, rehabilitation encompasses. Medical rehabilitation i.e. cures of curable disability and lessening the disability to the extant possible. Complete social integration Economic rehabilitation to here extent possible Education of the children of he school going age Providing all the concessions benefits guidance and counseling which are available

THE FAMILY
The strength of CBR programs is that they can be made available in rural areas with limited infrastructure, as program leadership is not restricted to professionals in healthcare, education, vocational or social services. Rather, CBR programs involve the people with

disabilities themselves, their families and communities, as well as appropriate professionals. The family of the disabled person is the most important resource.. The community should support the basic necessities of life and help the families who carry out rehabilitation at home. It should further open up all local opportunities for education, functional and vocational training, jobs, etc.

COMMUNITY RESOURCES
Considering community as foundation of CBR programme would help to utilize resource from with-in the community and make the programme cost effective.. The cost to CBR would merely be provision of technical support, out side expert services and man power for the promotion of the concept where as community would be able to contribute all the tangible as well as intangible local resources already available there. Examples are place for impacting training. Local trainers, row material for local crafts, shed for income generation activities, marketing facilities. Etc. Community has plenty of resources, to support and promote appropriate rehabilitation. What it lacks is appropriate information., skill, technology and support systems, which have to be organized by the CBR programme as inputs and service delivery.

COMPONENTS OF CBR
CBR focuses on enhancing the quality of life for people with disabilities and their families, meeting basic needs and ensuring inclusion and participation. CBR is a multi-sect oral approach and has 5 major components: Health, Education, Livelihood, Social and Empowerment The main objective for inclusion of CBR in the Health Care Delivery Services is Prevention of disability causing disorders Early detection of disability causing disorders

Early medical interment Early rehabilitation intervention Capacity building of different centers from peripheral up to specialized centers Training of manpower required for services delivery, teaching and research activities at different levels Equipping/String training primary Health centers The rational for incorporating CBR into health care system is that instead of creating another large vertical structure it trains the existing health care manpower in different aspects of CBR by equipping them with knowledge and skills

GOALS
The aims of Community-based rehabilitation (CBR) are to rehabilitate and train disabled individuals, as well as to find ways to integrate them into their communities the goals of CBR are to ensure the benefits of the Convention on Rights of Persons with Disabilities reach the majority. CBR aims to help people with disabilities, by establishing community-based programs for social integration, equalization of opportunities, rehabilitation programs for the disabled. By maximizing their physical and mental abilities, By providing access to regular services and opportunities By becoming active contributors to the community and society at large; The focus is beyond the individual: to improve the functional ability of people with disabilities as far as possible to achieve barrier free environments, information and communication methods in order to create an inclusive society to empower people with disabilities and their families as decision-makers at all levels of the CBR programme, and

 to create public awareness in order to influence local policies and ensure that people with disabilities have full access to all aspects of community life.

LEVELS OF CBR
At the community level, CBR is seen as a component of an integrated community development programmed. It should be based on decisions taken by its members. It will rely as much as possible on the mobilization of local resources. The family of the disabled person is the most important resource. The community should support the basic necessities of life and help the families who carry out rehabilitation at home. And open up all local opportunities for education, functional and vocational training, jobs, etc. Disabled community members and their families should be involved in all discussions and decisions regarding services and opportunities provided for them. At the intermediate level, a network of professional support services should be provided by the government. Its personnel should be involved in the training and technical supervision of community personnel, should provide services and managerial support, and should liaise with referral services. Referral services are needed by those disabled people who need more specialised interventions than the community can provide. The CBR system seeks to draw on the resources available both in the governmental and non-governmental sectors. At the national level, CBR seeks the involvement of the government in the leading managerial role. This concerns planning, implementing, co-ordinating, and evaluating the CBR system. This should be done in co-operation with the communities, the intermediate level and the non-governmental sector, including organisations of disabled people

CBR IS IMPLEMENTED THROUGH:

The formation of strong and vibrant cross-disability and gender balanced DPOs (Disabled Peoples Organisation) as a means to lobby and advocate for the removal of barriers that prevent

PWDs from exercising their rights and exclude PWDs from participating as equals in society. The creation of a Network between PWDs themselves, their families, communities, key persons and the relevant governmental and non-governmental health, education, vocational, social and other services. Mainstreaming and inclusion which is seen as an effective way: (a) to include persons with disability (b) to access equal opportunities and (c) to create a non-discriminative / non-handicapping environment for their growth and development. Training centres- various programmes need to be supported by timely and appropriate training inputs CBR workers to fulfill the roles expected of them. Resource persons- Training and deputaton of resource persons to hand hold projects in specified areas

THE ROLE OF A COMMUNITY WORKER

Survey of A Given Area : identification of Persons with disabilities and their needs assessment assessment of existing resources, facilities and services available (mappings) Follow Up on Individual Childs Record: Family history Case history Help and assist in medical and therapeutic service in the center Help and assist in case of referrals. Constant Contact and Interaction with Family: General counseling of parents to understand the disability of their child and how to take care of the child at home. Encouraging and persuading the parents to evil medical and other assistance available Building awareness of parents children with disabilities to discuss common problems, sharing of experience etc. Dissemination of Information : About the service and facilities available and how to get them

 Make parents understand the use of aids and appliances given them. Give information to the community about government schemes for persons with disabilities. Community Interaction: Organizing community awareness programmes through audio visual like film shows, puppet shows, dramatization, street plays etc. On various disabilities in the target area Creating awareness on health, hygiene, better nutrition, education, prevention of diseases and disabilities. Involving the community in implementing various programmes and sharing responsibilities. Facilities community involvement in the management of any programme and preparing the community, key individuals and group to share responsibilities. Mobilizing community resources for carrying out various activities. Formation of support group and hold regular meeting.

CURRENT COMMON USAGE OF THE TERM CBR

Today the main goals of rehabilitation have become broader than earlier, and focus beyond the individual to his/ her community where he/she is being integrated. Thus, the universal mission of CBR may be expressed as: To enhance activities of daily life of person with disabilities. To create awareness in disabled persons environment to achieve barrier free situations around him /her and help him/her attain equal human rights. To create a situation in which the community of the disabled person, participates fully and assimilates ownership of their integration into his/her Society. The term CBR describes numerous concepts: Home based service provided by families to their disabled member in their homes. Self help projects run by disabled persons, Out reach projects run by disabled persons, NGO projects run by paid CBR workers,

 An ideology, which promotes inclusion of disabled persons in developmental projects, A term to describe anything related to rehabilitation of disabled persons, NGO projects run by paid CBR workers, An ideology, which promotes inclusion of disabled persons in developmental projects, A term to describe anything related to rehabilitation of disabled persons.

APPROACHES
to the implementation of CBR are many and are determined by a variety of social and demographic factors. Bottom up Aproach (building the system from below ) This approach endeavours to start development from below, by first encouraging the establishment of community service and then linking them to a referral system at a stage. In a system built from below or bottom up approach, the educational objectives for professional staff working at referral centers are formulated in response to local requirement taking into consideration how existing resources could be restructured and decentralized. Professional Approach - this approach is based on applying professional discipline such as medicine, training and employment, and education to the treatment of disability. Camp Approach : under this approach persons with disabilities receive training and advice from specialists for adjustment to their handicapping conditions in their own environment for ultimate socio-economic rehabilitation. Training the field workers : this model/ approach is frequently used in our country to help persons with disabilities. Graduates of long term professional courses like teachers training, speech therapy, audiology, and physio therapy run by the national institutes are engaged as field workers in various CBR programmes. Training the family members : Under the model, the trained field workers in turn impart training to family members/relative of persons with disabilities in order to took after their specific requirement at home. This aims at promoting a better family

environment conducive to appropriate rehabilitation at home and the community.

BENEFITS OF CBR
Introducing rehabilitation services at a local or community level removes many obstacles which are associated with institutions. The difficulty of travel and its expense are eliminated or reduced to a minimum. The individual is not isolated from the community; family members and community volunteers are part of the rehabilitative process. All participants can see what the disabled person has achieved. This can help integrate the person into the community, which values the unique contribution which the person is able to make.

DEVELOPED V/S DEVELOPING COUNTRIES

In developed countries, the CBR model responds to the shift away from institutional care to home-based care. Health-care is restructured in light of reduced funding. In the developing world, CBR provides the focus for training a new corps of health and social personnel. In conflict and post-conflict regions, CBR is being implemented to provide essential rehabilitation services to a population ravaged by war. There exists across the world many National CBR Networks. At present three larger continental (regional) networks are under development including the CBR Africa Network (CAN), CBR America Network and the CBR Asia-Pacific Network.It is hoped that the AsiaPacific Network will become very active in promotion of CBR across the continent and in countries. The initial purpose of the CBR Asia-Pacific Network is to promote and strengthen CBR across the continent and in countries; mobilize resources, organize trainings and support information exchange.

Some CBR Programmes being run in India

(CBR) Forum established in 1996 is secular, non-profit organisation. CBR Forum plays a proactive and promotional role in Community Based Rehabilitation of Persons with Disabilities in India especially eastern India and in the inclusion of persons with disabilities in community development programmes. CBR Forum actively engages with the Government, Disabled Peoples Organisations, NGOs and people's movements in promoting the rights of persons with disabilities.The next step is the formation of District blvel initiatives (DLI) which will work at the Block/ District level, whileforming partnerships with other partner NGOs. One of the strategy of strengthening the disability advocacy programme is by facilitating Taluk/ Block Disability Advocacy Programme (TDAP) twice a year in one of the partner NGOs in every region. During this programme the representatives from the CBR Team and local DPOs (Disabled People's Organization) from the region participate for learning and replicating this process by all our partner NGOs in the country. Voluntry health association of Tripura VHAT has been implementing CBR project in four blocks viz; Bishalgarh, Boxanagar, Kathalia and Kakraban Blocks OF Tripura aiming to rehabilitate the person with disabilities in the main stream of the society. The main objectives of the project are: i) To identify the PWDs in project area, ii) ii) To screen curable visually impaired and provide them medical intervention, iii) iii) To bring community awareness and ensure participation in the process of rehabilitation, iv) iv) To provide assistive devices and need based age specific services to the PWDs, v) v) To associate with other government and non-government organizations in the field level as well as state level. The association of people with disability APD has started a programme called RCBR (rural community based rahabilitation programme). The objective of Rural Community Based

Rehabilitation was to make inroads in the provision of relevant support and services to children and young people with disability in the rural areas. Thus as a beginning, APD initiated work in Kolar with outreach activities gradually expanding to other rural areas as well. Another programme by APD is Its strategic Disability Development Program . It focuses on mainstreaming children and people with disability training in vocational skills for income generations. identification of medical treatment, provision of mobility and other functional aids. Networking with schools Special attention can be given to them during the ten month course in the specially constituted residential school in the rural campus at Kamtampalli, Srinivaspura taluk, Kolar district. APDs Deaf Education Programme focuses on children with hearing impairment, It manages centre based activities for children between 6 to 18 years of age where they learn the sign language and other communication skills. Two week programmes and monthly workshops for severe and multiple disabled children and their families help to focus on critical medical needs including therapy, mobility and functional appliances, and management of living skills. Vocational skills and livelihood opportunities APD organizes a six-month residential programme for upto 20 young women with disability in embroidery and tailoring skills National Society for Equal opportunities for the handicapped (NASEOH) Focus: To create comprehensive rehabilitation opportunities for the differently-abled persons so as to facilitate integration into the mainstream of the society, and to enrich the life of differently-abled persons as well as the interfacing individuals and community NASEOH has CBR programmes in several slums of Mumbai in association with Dr. R. B. Billimoria Department of Prevention of Disabilities. They run several programmes like Immunization of community and school going children against MMR, Hepatitis -B Reproductive and child health programme

Eye care project NASEOH implemented Eye care project at Thakker Bappa, Jagurati, Lal Dongar, Siddharth Colony, Gautam Nagar Chembur and Kappori -Thane. Worth Trust in Katpadi, Vellore have been identified as the nodal agency for the Tamil Nadu Government's Ministry of Welfare for implementing CBR in Tamil Nadu . They have set an example by their work in North Arcot Ambedkar district Rural Aid is situated south of Kanchipuram in Tamil Nadu, South India, and was established in 1985 to meet the growing demands of the disabled population in the area. Through their CBR they run an orthotic and prosthetic workshop,a multi-purpose health worker programme and a school for speech and hearing impaired children. ActionAid is an international anti-poverty agency working in over 40 countries, taking sides with poor people to end poverty and injustice together. In India today they are working with more than 300 civil society organisations and 12 million poor and excluded people in 24 states. Action aid India is running CBR programmes in 17 states of India. Seva-in-Action, was initiated in 1985 to minimize the gap that exists between the needs and provisions required for people with disabilities The goal was to provides a holistic & comprehensive rehabilitation services for all types & categories of disabled people in the rural areas. The strategy was to develop, services based on the strengthens and socio cultural fabric of our society. The comprehensive rehabilitation services for persons with disabilities (pwds) include Medical rehabilitation & follow-up, Early intervention programme, Educational Rehabilitation - Special & Inclusive Education for disabled children, Economic Rehabilitation through prevocational and vocational training, organising training programmes for parents teachers, CBR workers & trainers, and interconnection with Govt & Non-Govt. Organisations to promote public policies for PWDs is another important aspect of Seva-inAction.It has set up a number of CBR programmes in rural areas of Bagalore and kolar district of Karnataka

INTRODUCTION
As part of the project assignments of my course study, I was expected to construct and execute a community rehabilitation programme. As the term CBR implies I was expected to take rehabilitation services to the disabled population of some community who for whatever reasons were not able to come to rehabilitation centers and also did not have access to other medical and nonmedical facilities needed by them. The reason for my choosing Nithari village to launch a CBR programme was a girl called Kalpana. For the past three years while working as a volunteer in a special school in NOIDA I have been in touch with a 14 year old girl Kalpana suffering from CP. When Kalpana joined us 3 years ago she had never been to a formal school and was suffering from progessive scoliosis. With regular physiotherapy, occupational therapy, orthotic aids and special education she is doing much better. Kalpana comes from from Nithari village in sector 31, NOIDA. She and her mother had been telling me about the condition of their community and also the presence of other disabled children. Hence I decided to choose Nithari village for a community based rehabilitation programme. My target group was to be the disabled population.

OBJECTIVES
After having done a thorough study of the theory of the concept of CBR, I formulated the following objectives that I would like to achieve during my program

General objectives
To screen and identify persons with special needs To get them admissions in special schools or rehabilitation centers as the need may be.

Specific objectives
To screen the entire population of my chosen community and identify children with disabilities for further assessment Making the community aware of the need for assessment and rehabilitation so that the disabled persons can not only care of themselves but also contribute to the growth of the family. Making the community aware of the activities in a special school and the benefits to physically and mentally disabled children Getting the relevant assessments done for the chosen children. Teaching the CBR worker in getting the disability certificates for disabled persons. Getting the children who can be helped admission in special schools Training some members of the community as CBR workers for the future when the tenure of my programme will be finished. .

COMMUNITY PROFILE
Considering community as the foundation of CBR programme would help to utilize resource from with-in the community and make the programme cost effective. The cost to CBR would merely be provision of technical support, out side expert services and man power for the promotion of the concept where as community would be able to contribute all the tangible as well as intangible local resources already available there. Examples are place for impacting training. Local trainers, raw material for local crafts, shed for income generation activities, marketing facilities. Etc. Community has plenty of resources, to support and promote appropriate rehabilitation. What it lacks is appropriate information, skill, technology and support systems, which have to be organized by the CBR programme as inputs and service delivery. The first step is the community awareness for the need for CBR. When the programme is initiated from outside the community may not believe that it needs the programme. This awareness can be done by the programme manager from the intermediate or the district level. He can hold community meetings where the people with disability and their families define their needs and the community can decide whether it wants to address the needs in a coordinated way through a CBR programme. This awareness can also be done by a pwd who has already benefited from remediation programmes. A profile of Nithari village from various angles has been described

Location
The community chosen by me is part of Nithari village situated in sector 31 NOIDA. This comes under the district Gautam Budh nagar in State Uttar Pradesh.

Housing conditions
Most of the land area is covered in tall 3 4 story buildings. Each building has 3 4 houses per floor, in all having 15 20 houses per building. There are no pucca roads in between these buildings. Most of the drains are uncovered with the filth overflowing on to the passages between the buildings. There is one temple and one private school in the area. Every house has an average of 5 people staying in it. Each house has an area of 15 X12 feet, with a very small kitchen and a bathroom common to three houses . Every house dumps their waste right outside the house. The few dumpsters present are overflowing with waste. Women carry drinking water from municipality taps from outside the area.

Economic status and employment profile

During the survey it was found that most of the residents belong to the low-income group. Women are either housewives or work as maids in the nearby sectors. Men are mostly rickshaw pullers or peons, watchmen or delivery boys. The average rent of each house is Rs.1500 with extra expense for electricity and water. The average income per house is Rs. 8000.

Educational profile
None of the women I met had studied beyond 3rd standard. Among men average qualification is 8th standard. There is one private primary school in the area where the children study. A few children go to a nearby school for studies beyond the 5th class. This attitude was noticed in the houses of women who work as maids in rich households. Their thinking becomes progressive and the people they work for often sponsor the education of their children. Survey showed that the elder children on being asked said instead of finishing regular school they would like to do vocational courses like

computer courses so that they can start earning sooner and do not have to follow their fathers profession. The education level of the handicapped children is negligible as there is no awareness of their abilities.

Medical facilities
There is no medical facility in the area. Residents go to the government hospital in sector-30. But since the hospital is under renovation and temporarily relocated access to a reasonable doctor is difficult. There is a woman who heals using household substances.

Social services in the area

Social services or any other agency are absent. I was told this has been the case since the Nithari killings because the residents view every body with distrust.

Awareness and attitude towards disability

During the survey I came across 4 physically disabled children, 2 children with some amount of hearing loss and 1 child with severe mental retardation. The physically disabled are cared for in a manner as they get some massage or exercise though not in a regimented manner. The children with hearing loss have been supplied hearing aids by the government hospital but the MR child is not looked after at all and basically treated like an animal. On further discussions and meetings with the residents I discovered that 3 more children aged 7, 9, and11who are called simpletons by the villagers are in fact moderate MR who dropped out of school very early on because they were considered to be not bright enough. No attention had been paid to their delayed milestones.

A MODEL PROGRAMME FOR CBR Critical analysis of survey data

From the survey done it was concluded that the most important requirement of the community is knowledge and awareness about the different abilities of their disabled members. A model was developed for the CBR programme to be started. It included A door to door survey was done of 5 buildings. Each building has 15 houses. Hence in all 60 houses were visited. Kalpanas elder brother is being trained to become the local CBR worker . Ganesh accompanied me to all the houses. This was done in 5 visits. Families with disabled persons were identified and given information about assessments, rehabilitation techniques, Special schools, different government schemes for the benefit of disabled people.

During the 6th visit all the families were asked to collect in the temple courtyard. I had invited a senior occupational therapist Ms Monica to demonstrate how OT can help in almost all disabilities to lessen the discomfort. Also present were Dr. N. Srivastava , an orthopaedic surgeon who reviewed all cases of CP and suggested orthotic aids wherever neded.

Two boys aged 3 and 4 named Shiva and Ismial with mild CP were brought to Amar Jyoti where Dr. Srivastava helped to get their fittings for A.F.Os. Towards this pupose Govind had already arranged for the income certificates of their fathers. The families were advised to collect the A.F.Os later. I and Govind took a a girl named Meenu who has moderate mental retardation to the government hospital to get her Disability certificate made. This was done in order to teach Govind the process of getting a disability certificate made, so that he can later help the others.

 Two children Sonu Mishra and Sahil were sent for detailed OT assessments . Psychological assessment was done for Sujata a 5 year old girl with mild mental retardation and diaplegia. Sonu, Sahil, Sujata, Meenu, Kalpana and their families were taken to a special school in sector 29 which is very close to their houses. They were shown the various facilities available.

Secured admission for Sonu, Sahil, Sujata, and Meenu in the special school Amrit Masonic school. Arranged for a common transport for them.

METHODOLOGY
For my project work in CBR I have chosen Nithari village in sector 31 of NOIDA. It is a psuedoslum area in the heart of a modern township. It is populated mostly by lower income group people , with the residents having received very little formal education. The women working are housewives or work as maids in the nearby sectors. The men are also employed in menial jobs. I first got in touch with Kalpanas mother and asked her about the condition of the area they stayed in, the number of disabled persons present, attitude of the general population towards these people. The construction and distributioin of houses, no. of members per family, average income, leisure activities and other relevant information. Local CBR worker I then met Kalpanas brother Govind and asked his views on his sisters disability, his opinion as to the kind of life she should be entitled to whether Kalpana should study and follow a career if her disability should hinder her social life and leisure activities what does he think are his responsibilities towards Kalpana and other disabled people in his community Govinds answers satisfied me. He saw Kalpana only as his younger sister and her disability was just another fact of life. He even teased her about it. In his opinion Kalpana is a bright and sensitive young woman who should have access to all the opportunities that our country has to offer. In fact for her a career was more important than other young women. But he felt that rather than a prolonged formal education, Kalpana shoud soon persue a vocational course like computers. He said he would like to work for the other disabled people in his community and agreed to come with for my survey so could learn the whole process.

I then made my Plan-of-action, a model of the programme I wanted to follow and from August 2009 to January 2010 along with Govind worked according to this model

Survey
We selected 5 buildings where according to Govind there were PWDs. On each visit we went to all the 15 houses in one building and using the NIMH screening tools assessed the family members for any disability. After 5 such visits we covered 60 families During our survey we found the following children with disabilities Shiva a 4 year old child with mild CP is moderate MR Ismail alsoa 4 year old child with mild CP is mild MR Meenu is 12 yrs old suffering from scoliosis and is moderate MR Sonu is 10 yrs old. He suffers from hydrocephalus and is mild MR Sujata is a 6year old child with diaplegia and is a slow learner Sahil is 6 yrs old, suffers from Downs syndrome Shrey aged 18 is a slow learner Shantanu aged 20 is moderate MR and also has dyspraxia. Priyanka aged 11 is mild MR

Counselling
On our 6th visit we asked the families of the children with disabilities and other sensitive people to collect in the temple courtyard. I had invited a senior occupational therapist Ms. Monica and an orthopaedic surgeon Dr. N. Srivatava to come and address the residents. Here first I addressed the people. I told them that the purpose of the survey had been to identify other disbled children like Kalpana. I requested Kalpana to read a paragraph each of Hindi and English text. I told everybody present that If Kalpana can overcome her severe CP and go to school to study why cant other children do the same. I then told them about the special school in sector 29 and stated the benefits of the school as Children can learn basic reading and writing

 The children who need physiotherapy can get it on a regular basis for no expense Shantanu who has dyspraxia can get speech therapy and make his speech understandable to others They get to socialize with other children like themselves who will not ridicule them or not play with them They can pass their time fruitfully I then told them about the schemes initiated by the government for the benefit of the disabled Getting a disability certificate made Getting medical insurance under the National Trust. Getting loans under the NH I then told them that occupational therapy, speech therapy, and physiotherapy were activities that do not benefit if done for an hour every alternate day or even everyday. They have to be made a part of our everyday routine. Then Ms Monica demonstrated OT techniques on Kalpana and told everybody that Kalpana suffers from Scoliosis. If she had not been getting regular exercise for the last three years her spine would have been bent by now and she would have been bedridden and dependent on her family. Where as currently she can not only take care of her own needs but also help her mother and can soon start earning for the family Dr Srivastava told the people about orthotic aids that can be used to not only heal a deformity but also allows a person to fruitfully use a limb that was not being used. He demonstrates on a child called Shiva who seems to have CP. He tells the mother that if Shiva was to wear AFOs on his lower legs he could walk with support and with time walk on crutches or maybe even independently.

Economic constraints
Then I told them about the most important question on their minds, about the financial part The special school is free . And along with education all the other rehab services will also happen free of cost.

 The orthotic aids ca also be made free of cost from several rehab centers lika Amar Jyoti or from NIMH. After this I asked the group if they wanted to ask any questions Surprisingly everybody had questions for the three of us which we tried to answer.

Assosiated services
I then asked the group that I wanted to get a disability certificate made so tht Govind could learn the process, would anybody be interested. Meenu s father volunteered, So we decided to go the government hospital the next Thursday. Dr. Srivastava offered to get the AFOs made for Shiva and Ismail. Their parents agreed but on the condition that Govind would go with them. Ms Monica offered to do the detailed OT evaluation for Sonu and Sahil, but for that they would have to come to the school. So I offered to take all the families to the special school . The parents agreed Visit to the special school It was decided that everybody would come to the school the next morning which was a Tuesday and a lot of men working in shops had an off day as in NOIDA on Tuesday the markets are closed Next morning when I reached the temple a lot of parents had already collected. Govind went and got the others who had not come. At the school everybody saw a physiotherapy session which lasted 45 mts. Some parents were surprised that without charging any money so much effort was being made. They also saw a speech therapy session, a special education session with a moderate MR child and an OT session. The parents seemed very satisfied with the work being done by the school.

Disability certificate
The same Thursday I, Govind, Meenu and her father went to the paediatric OPD at AIIMS in Delhi. We were told that we would first have to go to the psychologist. So Meenus father first stood in along

line to get Meenus old OPD card stamped . We then went to the Psychologist in room no. 13. The psychologist Ms. Savita Sapra spent 20 mts with Meenu. She also saw Meenus old medical Records . She told us we would have to come back for another session the next Thursday. After she ascertains the percentage of disability a disability certificate would be issued. It would also have to be signed by the paediatrc genetist Dr. Madhulika. Next Thursday I reminded Govind who along with Meenu and her father went to AIIMS A diability certificate was issued to them the same day.

Orthotic aids
Shiva and Ismails fathers were asked to get an income certificate made. Ismails father is a watchman so he was able to get it easily. Shivas father is a rickshaw puller so he had to get it on a stamp paper. Govind helped him with it by taking him to sector 26 wher they got the income certificate from a lawyer. I, Govind, Shiva, Ismail and their fathers went to Amar Jyoti In Karkardooma Delhi. Here we met Dr. Srivastava who took us toi the orthotic department. Here the measurements were taken for the childrens A.F.Os. We were asked to collect them in 15 days time. After 2 weeks Shiva and Ismail s fathers first called and then went to collect the aids along with their children. The aids were fitted and after proper setting was achieved they were given to Shiva and Ismail.

Occupational Therapy
Sonu and Sahil were brought to the school where Dr. Monica did their OT assessments and made exercise plans for them. These exercises were demonstrated and taught to their mothers.

Psychological Assessment
Sujata was taken for a psychological Assessment At Fortis hospital, Secor 62, NOIDA. After 4 sessions of 30 mts each the Psychologist Ms Vandana Prakash asked us to come back for the report in 3 days

Admissions to special school

After having met and counseled the families for four months The parents of Sonu, Meenu, Sahil, Sujata agreed to getting them admitted to the special school

OUTCOME
The outcome of the 6 months of work done at Nithari village for my community based rehabilitation project was as under The most important outcome was the change in perception of the community towards the most marginalized of its population i.e. the disabled population A big population of the village got screened for any mild disabilities or even milestone delays The community became aware of the requirements and also capabilities of their disabled population. Community became aware about the schemes for the benefit of the disabled persons being run by the government of India. The process of getting a Disability certificate issued and its uses became clear to the people. The importance of physiotherapy, Occupational therapy, Speech therapy and orthotic aids was understood The difference between a massage and structured physiotherapy exercises was understood. 4 children from the community got admitted to a nearby special school.

COMMUNITY BASED REHABILITATION

Submitted by

Jaspreet KAUR

AMAR JYOTI REHABILITATION RESEARCH CENTRE B.Ed (SE DE) MENTAL RETARDATION MADHYA PRADESH BHOJ (OPEN) UNIVERSITY In collaboration with REHABILITATION COUNCIL OF INDIA

INDEX
PROJECT TITLE INTRODUCTION TO CBR What is Community Based Rehabilitation? INTRODUCTION TO MY PROJECT OBJECTIVES General Objectives Specific Objectives PROFILE OF THE COMMUNITY A MODEL PROGRAM OF CBR METHODOLOGY OUTCOME EXPERIENCE LIMITATIONS FOLLOW UP WORK REFERENCES

ANNEXURES
Photographs Community Profile Form Screening tools Statistical analysis of the survey data Mindset of the women before and after the program. Pie charts. Comparative analysis of the types of disabilities found in the community. Pie chart Case Study Forms for Kalpana, Meenu, Sonu, Sujata, Mahima, Priyanka, Sahil School Admission Forms for Kalpana, Sonu, Meenu, Sujata Occupational Therapy Assessment for Kalpana Sonu Disability certificate of Meenu Psychological Assessment of Sujata

Mindset of the people of the community before the onset of the program ANSWER YES NO NOT SURE TOTAL No. OF WOMEN 6 32 22 60 PERCENTAGE 10% 60% 36% 100%

During the survey of the community when I asked the women if disabled children of any type and magnitude would benefit from being allowed to study in a special school. Out of the 60 women questioned 32 i.e. 60% said NO, 22 women i.e. 36% said they did not know and only 6 women said YES

Mindset of the people of the community by the end of the program ANSWER YES NO NOT SURE TOTAL No. OF WOMEN 48 6 6 60 PERCENTAGE 80% 10% 10% 100%

By the end of the program there was a drastic change in the mindset of the women with 80% saying that their children would benefit from going to special schools

COMPARATIVE ANALYSIS OF THE TYPES OF DISABILITIES FOUND IN THE COMMUNITY.

TYPES OFDISABILITIES

HEARING IMPAIRED VISUALLY IMPAIRED PHYSICALLY DISABLED MENTALLY RETARDED

No. OF CHILDREN 2 1 5 4

PERCENTAGE 17% 9% 41% 33%

No. OF CHILDREN

ABILITIES HEARING IMPAIRED VISUALLY IMPAIRED PHYSICALLY DISABLED MENTALLY RETARDED

PROJECT TITLE

ADMISSION TO SPECIAL SCHOOL AND ASSOSIATED SERVICES

My Project work On COMMUNITY BASED REHABILITATION For MENTALLY RETARDED PERSONS In Nithari village, NOIDA Conducted during September 20009 January 2010

Experiences
My experiences during the six months of my community-based work in Nithari village was bittersweet. I saw both the worst and the best of humanity. That the disabled people form the most marginalized part of a community was known but they can also be treated as valued members of a family came as a pleasant surprise. Of the 60 families I met 14 had disabled members in varying degrees. Only I of them was going to a special school Despite having I child attending special school, the other families were not aware of the capabilities and the requirements of their disabled members These children are only being offered the basic requirements of food, clothing and shelter. The 2 hearing impaired people I met, 18 and 21 years of age were not being treated as disabled because of their adaptation capabilities. They have adapted so well to their disability that their handicap is not impairment. The girl Priyanka also fulfills her duties so well that her being poor at remembering academic lessons does not matter to her family The physically disabled children were worse off. Because of their disability they could not attend the mainstream school in the village that the other children go to. Due to lack of stimulation MR had also set in. Where as simple orthotic aids could make them mobile enough. There was a lack of awareness regarding the schemes of the government for the benefit of PWDs. But once they were made aware of the ease with which these children could be helped 60% of the parents jumped at te opportunity.

Limitations
The first limitation was the language .The dialect of Hindi used was such that I could initially not understand. Later I became more familiar and Govind also started helping me understand. The second limitation was a lack of Identification proof. The people were scared after the Nithari killings and so were reluctant to let strangers enter their homes Their earlier experiences with social workers was also a limitation. As they put it everybody just clicked some photographs and then left. So I assured them that I would not take any photographs. The biggest limitation was trying to change a lifetime of mindset about MR people. Making them forget the word PAGAL and start seeing them, as another family member capable of contributing to the family and the community was a very difficult job.

Apart from Govind I could not convince anybody else to become a CBR Worker. Since it is non-paying job nobody wanted to waste their time.

Follow up work
This in my opinion was the most important part of the project Sustaining the momentum of change built in the 6 months I worked with the people of Nithari people seemed difficult. It was important to keep faith with the people. The CBR worker trained by me, Govind will actually be the one to continue the momentum. He will continue helping the PWDs already identified. Whenever he notices a change in them for better or for worse he is free to call me. Once a week, every Thursday, for 2 hours Govind will visit the families we did not meet earlier and screen them. If he suspects any disabilities, he will call me and if need be I will visit the community on Fridays for 2 hours. If Govind comes across any new PWDs who need Psychological, occupational therapy, speech therapy or physiotherapy assessments, I will help him get them done. I will visit the village the last Friday of every month for the next 6 months to meet the families I am already in touch with. I will stay in touch with the children admitted to the special school, as I am associated with the school as a volunteer. I will help Govind provide associated services to PWDs like getting disability certificates made, applying for guardianship under National Trust and applying for loans. I will liaise with different government departments to improve the water, sanitation and general living conditions in the village I will try and involve other social service organizations and NGOs in providing vocational services and jobs to the people with disabilities.

REFERENCES
Chatterjee, S. & Chatterjee, A. (1999) CBR for mental illness in a rural/tribal setting. Action Aid Disability Journal, 10, 47-51. Evans, P. J., Zinkin, P., Harpham, T., et al (2001) Evaluation of medical rehabilitation in community based rehabilitation. Social Science and Medicine United Nations Development Programme, Human Development Report. New York, Oxford University Press, 2000. Resource Center For Rehabilitation And Development Nepal (2001). Website, http://www.geocities.com/rcrdnepal/ Gurung J. An Overview of Current Status and Future Trends of CBR in Nepal. Asia Pacific Disability Rehabilitation Journal 1999; 10(2).

Mindset of the people of the community before the onset of the program

No.OF WOMEN

YES NO NOT SURE TOTAL

Mindset of the people of the community by the end of the program

No.OF WOMEN

YES NO NOT SURE TOTAL