Genesis & Growth

SAMADHAN is a Delhi based Non Governmental Organization registered in 1981 December under the Societies registration Act of 1860. (Reg.No.1283). At this time what was available to persons with mental retardation in Delhi was negligible. The few schools and organizations which provided services were located mostly in urban Delhi. The children and families living in the slums and the poverty packets, had no recourse to support services of any kind. Yet this was an area where the need for services was greatest. Delhi has the peculiar characteristic of residential "resettlement colonies". The name indicates the process by which under the slum clearance scheme launched by the then Government some years ago, slum dwellers were shifted to new locations and given 22 square yards of land to construct their own homes. Although this was an effort to improve their living conditions, the thinking did not extend to provision of better Hygiene and sanitation facilities. Consequently, these resettlement colonies are presently huge sprawling habitations where large numbers of families live in cramped accommodation with insufficient civic, health and other basic amenities. There are forty-eight resettlement colonies in Delhi apart from the Jhuggi clusters which are slums. About 10 to 12% of the population in India is estimated to be living in slums. 

Most of the residents of such resettlement colonies are migrant laborers and theirfamilies who come in from nearby states for short periods to find employment or better their prospects. As such, they are a heterogeneous mix of multilingual, multicultural and multi-religious groups. Most of them have a minimum of about fifty thousand households with an average of five to eight members in a family. They are mostly illiterate though the younger generation does have access today to free schools run by the Delhi Administration. The general attitude of such communities towards persons with mental retardation is one of apathetic acceptance at best and downright neglect at its worst. Many families are still shackled to myths and superstitions about disability and in particular about mental retardation. The lack of services within accessible distance coupled with the lack of awareness and sensitivity to the problems faced by the mentally retarded and their families by the community of which they are a part further aggravates the situation.  

SAMADHAN‘S first program was undertaking an informal study of the situation pertaining to the education and training available to the mentally retarded in the city of Delhi. The study revealed that only the child in the school going age group i.e. the child between the ages of five plus and seventeen plus had some opportunities for education and training. But even here the infant and preschool child and on the other end of the scale the adolescent and adult person with mental retardation did not have programs geared towards their specific needs. Thus the child below five years of age lost valuable growth and development time. Those who left school had no chance of further education or training which would lead them to some form of meaningful employment. In particular it was the mentally retarded person living in the low income areas who suffered the consequences of the double handicap of poverty and disability. It was to plug in these lacunae in the delivery of services that SAMADHAN was started. 

Our first priority was on programmers for families in the low income areas and specially the child in the preschool age group. The mission Statement which evolved over the years spells out our philosophy which states that "all persons with mental retardation can be helped provided they are given timely and appropriate support ". The strategy adopted was based on grass root realities. As far as possible resources of both manpower and materials where those that were already available in the low income communities which were the target areas. In keeping with this, our planning was based on the transferring of specific skill to members of these communities. The goal was to provide suitable training and information to help thee deliver the services themselves, with SAMADHAN acting as a catalyst and offering technical expertise. 

In 1982 a small group of volunteers did a house to house survey in a low income resettlement colony in South Delhi called DRKSHINPURI. The survey was conducted by University students who belonged to the NSS (National Service Scheme) and was an informal compilation of data. The WHO Ten question Checklist (TQC) was used initially to identify families with children with any kind of a disability. This coveted also disability caused due to environmental and cultural deprivation. It was found that 90% of the families with children who were frontally retarded had made no efforts to seek a professional opinion nor did they have recourse to any kind of support or relief either from their own families, community or local and Governmental health programs. The National Institute for the Mentally Retarded itself was started only in 1984 .In contrast, children with other disabilities did have a comparatively easier access to support programs and the families also were more aware and informed about the child's handicap. In a nutshell this summed up the low priority given generally to programs for the mentally retarded.  

The input most necessary at this juncture was the sensitization of the community at large and enhancing the awareness, information and knowledge of bath families and community . Finding that written information literature was useless in an area which was largely illiterate, puppet shows were scripted and performed to create awareness of mental handicap in the community. This along with the video cassettes and slides prepared at a later stage have now become a regular component of the campaign for awareness of mental retardation and is incorporated into our class room teaching and other training as well.  

The first SPECIAL EDUCATION UNIT was met up in Dakahinpuri with three children. 
This Unit groan reached a stage where the children needed further education and training opportunities, having reached their teens. A Vocational Training Unit was therefore added to accommodate these children. The choice of vocation was based on the ecology based curriculum formulated after an informal study identified the skills most in demand in a given community/target area and therefore with the most potential for success.  In 1986, anticipating the need of families with infant children born with mental  retardation or "at risk" far delayed development Dr. Peter A. Woods of the Bryn–Ny–Neudd Hospital in South Wales, who is an internationally respected authority on the PORTAGE MODEL OF SERVICE DELIVERY was invited to conduct workshops for us. This program identifies children with disability a, early as possible and puts in place appropriate intervention techniques with the active and positive involvement of the parents. Thin resulted in "The HELP THE HANDICAPPED AT HOME" Program, which was started in early 1987. 

However after a period of time, we had to make certain adaptations in the Portage Model to suit the low social economic character of our target areas to make it more culturally appropriate. We also began to make imaginative innovations to find ways of involving the member of the community to take on the responsibilities of the service delivery. Literature and examples of similar programs elsewhere were mostly inappropriate and could not be transferred wholesale to suit our uncork ethos.  We found that given the socio–economic situation in India, the tremendous need for services and the paucity of these services, the best method of reaching those in need was to provide them with the infrastructure of professional support and relief within their communities and within commuting distance of their homes. This was in direct contrast to the concept of Institutionalization of services, which was prevalent. Here the parent and child must present themselves periodically to the service organizers for help. This was a procedure which many of the families in our target communities could not adopt since most of them were daily wage laborers and economic necessity demanded that both parents work for a living. Our thinking also reflected the global realization that institutions did not cover the range of services necessary. 

The strategy adopted was to recruit workers from within the community and give them a basic training." the HOME INTERVENTION PROGRAM, which was, now launched has evolved into a distinct two pronged approach. The Home Intervention and the Centre Based Support Program. The first is delivered by workers called HOME ADVISORS from within the community and were identified and trained in specially designed training programmers. The second is Centre based and staffed by a multidisciplinary team of specialists. All the assessments screening, diagnosis, the individual educational and training programs for each child and all the therapy requirements are done at the Centre. Counseling and guidance of parents and individual and family therapy farm a part of this. The multidisciplinary team also undertakes in-house orientation of staff and the training of Home Advisers, the six monthly reevaluations of children already in the new various units of the program and the initial assessments for new admissions. 

The advantage of utilizing the skills of trained local community manpower was the immediate rapport they established among the families they visited. It also induced active involvement of those in the community who had the time and the inclination to work for the better future of the members of their own community who happened to be mentally retarded. Some of these workers had a high school education but there were many and in particular the older workers who had no education at ail. But careful nurturing through periodic orientation workshops coupled with opportunities for "hands on training " has resulted in a group of very dedicated and loyal workers. 

The HOME INTERVENTION PROGRAM aims at transferring the skills of home management of the mentally retarded child to the parents or care giver. The Home Advisors visit families in rotation for one to two hours a week and demonstrate techniques, which the mother then follows on her own. This has become a simple and cost effective way of providing support to the family and is very successful. 

A REHABILITATION CLINIC was started as a support to the Home Intervention Program. In a situation where the Home Adviser could not cater to some of the demands made on them they refer the child and the family to the CLINIC where the professional services of five member multidisciplinary team is available. Where possible the appropriate intervention is carried out at the Centre itself. For specific inputs such am surgery or fitting of hearing and orthotic aides etc. referrals are made to other agencies or organizations. 

The HOME INTERVENTION and the CLINIC together provide a comprehensive COMMUNITY BASED REHABILITATION PROGRAM (CBR). This makes extensive use of the trained and motivated workers from within the target community. Our experience and a study of the needs of the client families, which emerged, indicated that we focus on the early identification of disability and the prevention of disability rather than rehabilitation programs. Rehabilitation to be truly successful should lead to independence and acceptance by Society .It is not an end in itself but an ongoing process. This rarely happens. Our expertise gathered over the years also supported this 

The present focus therefore of both the Home Intervention and the Rehabilitation Clinic is on the infant and preschool child. In an effort to prevent the onset of secondary handicaps, both children who are mentally retarded as well as those children at "risk" for delayed development are identified as early as possible and preventive intervention programs put in place. The responsibilities of the Home Advisors therefore includes the identification of families who need help, locating motivated persons to undergo training as possible Home Advisors, the actual home visits and liaison with the professionals at the Centre. Some of them also help in the actual running of the Special Education and the Vocational Training Unit at the Day Care Centre by providing inputs within their capacity. 

Since most of the workers have at best middle school education only the training done had to depend on visual and practical inputs. Therefore a video on training parents, Home Advisors as well members of the community called EK KADAM AAGE (One Step Forward) was made. It graphically illustrates the methodology of training an infant or a preschool child in skills which are necessary for daily living and which prepare the child for interaction in a school set up or in society. Shot on location in Dakshinpuri itself using the Portage Model of service delivery, the advantage of this film is that it shows how anyone with motivation but not necessarily academic education can work effectively with these children. A number of slides have also been prepared. Alertness to the changing ambience of the low-income target areas and imaginative innovations to meet the new demands which are constantly surfacing have become a part of the planning process.  

Apart from our programs in the low-income areas, a center-based service called THE EARLY INTERVENTION CENTRE also functions five days a week providing specialized services to the child in the 0 to 6 age bracket. This operates form Vinobapuri (Lajpat Nagar), which is an urban residential area and caters mainly to middle income families. The program is provided in an enriching and stimulating atmosphere and the child allowed to work at her own pace. Special sessions in the afternoons provide extensive therapy as indicated through the assessments for children who cannot attend the regular morning school. Most of these children are severely retarded and no other school accommodates them. 4 DISTANCE TRAINING PROGRAM is conducted from this Centre where families from outside Delhi come far an initial assessment but return to their homes to carry out the written programs given to them. 

An extremely innovative and successful program has been attracted in Dakshinpuri. This is the inclusion of DRAM4 THERAPY, which uses the techniques of drama as a therapeutic tool. All the components of drama such as music, rhythm, movement, voice, and dance areused to enhance specific skills in the child. Working in close collaboration with the Occupational therapist and the Clinical Psychologist, Drama Therapy has become an integral part of the curriculum. Introduced to us by Dr. Sue Jennings of THE INSTITUTE OF DRAMA THERAPY in the U.K. we were instrumental in introducing Drama Therapy into India through an all India workshop. Successive workshops have helped us to establish this medium of education .Our goal now is to transfer the techniques of drama therapy into the rich Indian tradition of dance and music. 

Our experience in DAKSHINPURI where we made many mistakes and tried different approaches helped to finally arrive at a viable and replicable program. It has resulted in four other centres. TRILOKPURI in the east of Delhi, ASOLA VILLAGE and VINOBAPURI in the mouth and BURARI VILLAGE in the north. 411 of them, except Vinobapuri which is a middle income residential area, share more or less common characteristics. 

Approximately 400 children benefit from a continuum of services in our five-Day Care Centres. Special Education is offered to children in the 5 plus to 14 age group, Vocational Training to the 14 plus and Early Intervention to the 0-6 yrs. The statistics from the Rehabilitation Clinics tend to fluctuate since many of the families migrate into the city when there is a season of maximum employment and spend the rest of the time back in their villages. 

An INFORMATION AND DOCUMENTATION UNIT has been initiated to cater to the many requiring information on various aspects of disability and mental retardation in particular.A REFERENCE LIBR4RAY has about 500 books on mental retardation and   magazines and journals from all over the world. There is also a small library of videocassettes and slides. Considerable referrals are done through this service matching parents needs with service providers not only in India but all over the world. The need we seem to fulfil is for information since most of the requests we receive are from research students, in India and abroad and from parents seeking support services.  

As part of this Unit we bring out a Newsletter called SAMADHAN NEWS which is published as a quarterly issue. It has a worldwide circulation of about 1000. Periodic bulletins on issues of relevance and importance are also published with the aim of providing up to date information to parents and professionals working in this field. Another aspect of this Unit is the organizing of seminars and workshops dealing with topical issues and which highlight the needs of the mentally retarded. Training programmers by our multidisciplinary team is also undertaken for parlors of other NGO's. Video shows and talks to schools and colleges help in disseminating information about mental retardation and dispel many superstitions and myths. 

As affiliate members of the world body INCLUSION INTERNATIONAL since 1988 with its headquarters in Brussels and representing India on the ASIAN FEDERATION FOR THE MENTALLY RETARDED (AFAR) we are in constant touch with global happenings and in particular news of latest research and trends in services for the mentally retarded. This helps in aligning our work and our priorities to present day realities and expectations. We act as advocates for this most vulnerable group in our Society by highlighting issues either through the Newsletter or organizing seminars and workshops to debate these issues. 

Although started as a single disability program there has been a paradigm shift towards catering to all disabilities except the visually handicapped. Consequently our programmers have taken on an integrated approach and admission is given to any child who is in need but our main will always remain an the child with mental retardation.