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Genesis and Growth of Samadhan

SAMADHAN evolved from a single disability NGO to one, which is cross disability. Central to the evolution is being alert to the fact that there is nothing as constant as change and that change, however traumatic, is indeed the essence of growth. In the early formative years, expansion was rapid because as a response of one individual to the challenges of mental handicap, it did not have a research bias or a planned progression of activities and had no fixed goals in sight. The only mandate was to make the lives of persons with mental handicap easier and provide as much support as possible to the family, particularly those living in conditions of poverty and deprivation of many sorts. Given the sheer size of our country and its geographical, economic and social diversities and that many equally important issues jostle for attention of the government, the priority for action was eventual independence of persons with mental handicap by making meaningful use of available resources within communities as far as possible. These were critical resources already present in the community such as the time the women had for child rearing, the strong sense of family and kinship and their potential for income generation as well as resources of materials and manpower. Understandably, economic resources were scarce and we hoped to provide organizational resources. It is in this scenario that the focus of SAMADHAN on empowering the families themselves and gradually the community to accept and provide services for persons with mental handicap amongst them, as best they can, takes on relevance.                                                                         
                           
It all began a long time ago in Bangalore. Visions of a little girl walking around in the garden, talking to the flowers are still with me. The little girl was Manju, my niece who was born with Downs Syndrome. She was loved and cared for and well looked after. Yet we did all the wrong things out of love, little realizing that what we should be giving her was her independence. To live her few years of life as best she could. Growing up with Manju and watching her grow in innocence and with an amazing capacity to adjust to whatever situation she found herself in, happy or sad, without questioning and complaining was, I think in retrospect, the foundation for what I would do many years later.

Although SAMADHAN was registered in 1981 it was only in 1983 that I finally began serious work. My own apprehensions at my lack of relevant training kept me dithering. However a compulsive and insistent energy propelled me to begin and coupled with a gradually dawning sense of destiny that this was my life work I finally found the courage and the confidence to make a beginning. The services, which are now established in Dakshinpuri, a resettlement colony in South Delhi, have developed over the years through imaginative circumvention of problems for there were neither guidelines nor sources of support. Services are small and easily manageable. They can be replicated in any area where poverty and lack of accessible services prevent children with mental handicap from getting what should be their right. Services which are accessible, available within commuting distance, adequate and above all affordable. Hence SAMADHAN, which has a Sanskrit, root meaning “ a solution to problems”.

Mental handicap is not a health issue in the usual sense of the term and hence cannot be viewed under health determinants. It has wider and more in depth ramifications and is a more complex blend of the presenting handicap and many other components. It affects the whole family psychologically, emotionally, economically, and socially. It affects the larger community in terms of lost manpower and distorts attitudes and approaches providing fertile ground in which negative traditions and superstitions thrive. One cannot dislodge the person with mental handicap from his place in the community and reach out to him in isolation. Investing in the person with mental handicap is not only a question of his Rights as a human being and a member of his community or society but sound common sense as well .To have a population of persons with disability who form part of the mainstream community contributing in the best way they can, rather than being dependent on individual or government largesse makes for realistic economic and social policies. It reflects not the absence of sickness but the well being of the person.

Before I could make any kind of meaningful contribution I needed information on the status of families with mentally handicapped children in Dakshinpuri. I persuaded a group of volunteers from the Delhi University National Social Service Scheme to do a survey for me. They covered five blocks in Dakshinpuri using the WHO Ten-Question checklist, which is a simple list of questions and enables one to identify persons with disability. They were given a one-day orientation and let lose in the community to work at their own pace and in their own time.  The only stricture was that they would come back to us with their results in one month.  These seven volunteers covered five blocks. They identified fifty-three families with children with varying degrees of mental handicap. The Mobile Creates, another NGO was already working in Dakshinpuri but with normal children of construction workers, kindly allowed me the use of their room on the first floor. This was to be SAMADHAN’s central place of work for ten long years.

The survey showed that Dakshinpuri was mostly inhabited by families who had earlier dwelt in slums and had been given 22 sq.yds of land by the then government under the Slum Clearance Scheme and came to be called Resettlement Colonies. Most of the residents were caught in a vicious cycle of malnutrition, ill health and unemployment. It was a debilitating and frustrating bind caused by poverty and its dimensions. The tragedy was that it was the mother and the child with mental handicap who were most affected. Added to all this was the dismal lack of basic civic amenities. The fact that in spite of poverty and all its implications, the mothers’ in this low-income area accepted their children with mental handicap was totally humbling. Perhaps they did not actively seek services and perhaps their acceptance was apathetic at its worst but there were few instances of rejection. So, although the first program was special education, it was actually a starting point for the eventual reaching out into the community through parents and in particular, the mothers. When a stage was reached when the children above the age of fourteen were unable to progress through special education, a vocational training unit was added. Similarly when mothers began to bring infants and very small children below the age of five years, it was time to start an early intervention unit.  From direct services to the children, it was logical to step into the community itself. This resulted in community outreach programs. Again, it was the needs of the community plus the peculiar characteristics of the low-income target community that dictated our development, so that small easily manageable Satellite centers became the norm rather than expansion through the building of institutions. Consequently, an infrastructure for training of both parents and community workers were built around the needs and constraints of the trainees, who were all women from the target community. Today our focus is very firmly on three major issues. Disability, women’s empowerment and poverty.  Disability because that is the raison d’etre of SAMADHAN and because from a single disability program we cater today to all handicaps except the visually handicapped. Women, because they are the agents of change in he community and form the bulk of our community and survey workers. Poverty because tragically, many avoidable handicaps in our country are due to malnutrition and poverty related causes. The greatest impact is on the child and hence our special focus became early identification and intervention for mental handicap.

Many of the residents were daily wage workers and missing a days work meant a financial loss with severe implications, so all the necessary services had to be provided under one roof and within the community to make it accessible, so that the child and the family could access support services with a minimum of hardship. This meant also a continuum of services from early intervention to exploring employment opportunities for adults. It meant providing medical and therapeutic support, counseling, planning and implementing appropriate training to suit trainees from the target community.

The strategy was to create an interface directly with the community and thus gain a point of entry. Two distinct forms of service delivery began to be established. Direct services to the child with mental handicap and services reaching out into the community. The aim was to involve the community members and empower them with the skills to create a disability friendly environment. The hoped for result was acceptance of persons with disability and particularly persons with mental handicap as an integral part of Society. The question, which needed an answer, was ‘ How do we maximize the potential of a community “? This led logically to an even more pressing question.” What is a community “? As social scientists tell us it is shared perceptions and the experience of a common life that make communities possible. Different religions, languages, cultures, and in fact anything which binds a people together into a cohesive whole can be termed a community. But Dakshinpuri was not a community in this sense. It was home to a heterogeneous mix of people of different religions, cultures, languages and life styles. Residents were mostly migrants from many different parts of India lured by the dreams of opportunities in a big city. Very distinct needs became apparent, apart from those caused by the presence of a child with mental handicap, or indeed any kind of a disability.  These were problems caused by unemployment, extremely poor civic facilities, malnutrition, alcoholism, the lack of adequate health care facilities, all of which kept alive a flourishing trade in back door methods and a Mafiosi which changed political sides as deftly as the politicians themselves. These issues did impact on our work in many negative ways.  Services therefore had to be comprehensive and address these various issues while keeping focus on persons with mental handicap at the forefront.

A fortunate turn of events at this stage helped me in viewing my goals and strategies with greater clarity. In 1983 I received an invitation for a six months study visit in Germany from Mr. Tom Mutters who is the founder of LEBENSHILFE, an NGO he set up to counter the after effects of World War II, specifically for persons with mental handicap .It functions through some four hundred parent groups. My visit was to radically change my thinking and provide me with many valuable learning opportunities. My brief experience in Dakshinpuri through the survey helped me to retain my focus on what I felt we needed here in India so that when I did visit Germany I had a good idea of what I was looking for. I traveled extensively; visiting special schools, talking to people actively involved in this field and most of all through direct observation. I lived, ate and went to work with a group of adult persons with mental handicap in a little town off Frankfurt called Burvenich.  I spent time in the factories; farms and sheltered workshops where the residents of my Home spent their working days and got paid at the end of the week just like everyone else. Actually living in a residential Home taught me many lessons. I was also able to discuss the nature of organizational development, planning and implementation of services and saw for myself what was happening in what was West Germany at this time. Germany then was very much like India today. Special Education schools and segregation rather than Integration and sheltered workshops rather than open employment. But things were beginning to change even then as it is also with us now.   This was before the concept of normalization of Wolfe Wolfensberger who advocated that mentally handicapped persons should be allowed to live as normal a life as possible and that the environment should be changed to suit their capacities rather than change people to adjust to an environment created by normal people for normal people. I was impressed with this philosophy.

Visiting one of the largest residential facilities which had comprehensive in house facilities such as its own bank and post office, its own workshops, schools and jobs for the residents, left me overwhelmed  .I knew that by no stretch of imagination could we achieve something like this. In one of the Pediatric hospitals I saw doctors identifying babies at “risk” and immediately starting intervention measures .l learnt how crucial it was for early identification and how it could prevent the setting in of secondary handicaps. My stint in a home for severely handicapped adults left me feeling lost for the kind of financial support and professional expertise that was part of the infrastructure was something I knew could never be possible back home. As did my time spent in a residential facility for adult women with mental handicap.  In India we did not as yet have residential facilities for persons with mental handicap for most of them lived with their families and whatever the kind of care they received, they were part of the family unit.  I realized that this tradition was a source of strength. I had neither the facilities, the supportive infrastructure nor the money to import service delivery systems. My German experience helped me to crystallize my thinking. I resolved that Samadhan will set up a premier service facility through which services will be provided to all persons with disability and in particular persons with mental handicap in areas of low income through locally available manpower and materials and appropriate models of service delivery. This later became my Mission Statement.
 
My original concept was to provide services to low income areas in the five geographical zones of Delhi. This was implemented during 1989 to 1996. These were a replication of the Dakshinpuri program in Burari in the North, Trilokpuri in the East and Asola Village in the South  .In Vinobapuri, again in the South, the focus was on early Intervention and Stimulation for the under fives. All of these except Vinobapuri were areas of low income. In 1996 an evaluation of all our services by invited professionals recommended that we consolidate our energies and funds in one geographical area for increased efficiency. At this time we were also increasingly becoming aware of the crucial need of the preschool children in Dakshinpuri since mothers with very small children had begun to attend our Clinic.  I took a heart breaking decision to gradually phase out the four Centers and replicate the early intervention program in Dakshinpuri. We relocated staff and children as far as possible and over a period of six months gradually phased out the centers while simultaneously increasing our input in Dakshinpuri. Sharing this very traumatic experience highlights that not quantity but the quality of services matter .In this case it was the blossoming of our services in Dakshinpuri. What makes the whole effort worthwhile is that during the period when all five Centers were functioning we provided special education, vocational training, clinical and therapeutic services to about eight thousand families, excluding families on long distance support and a variety of parental support measures.

Funds were a major concern but they did start to trickle in gradually. UNICEF. Action Aid, and the then Ministry of Welfare have all supported the early growth of SAMADHAN .It was the amazing action of OXFAM though, which funded an idea, even before there were any concrete services established that really launched SAMADHAN. There were others who were major supporters. MISEREOR, another German funding agency was instrumental in helping us launch our first program offering services of early identification and intervention for infants and preschool children in Vinobapuri and stayed with us when the direction of our growth indicated a paradigm shift from urban Delhi to Dakshinpuri. They also supported the Special Education and the Vocational Training. What was started by these early funding agencies was carried forward with C.R.Y till recently. For innovative and really down to earth support BRITISH AIR has the sole claim. In November 1997 a team of ten British Air staff from their ticketing office in London visited us. They had a vision. To commemorate fifty years of India- Britain relationship with tangible support. Our need at that time was to complete our building in Dakshinpuri. The cheerful and willing work they put in, doing actual hands on work, carrying bricks, building the walls and digging was a lesson in the dignity of labor. Not least was their foray into the community where they made many friends, playing cricket with the local youth and even eating bread pakoras in the dhaba (much to our apprehensions). Their visit resulted in extremely positive public relations for us. The latest in a long line of wonderful people who support our work is THE LEBENSHILFE ASSOCIATION IN VIENNA, Austria.  It is thanks to the empathy and understanding our partners brought to our situation, their confidence in us and the willingness to invest in our work, that helped us survive many an obstacle.

Like any NGO we do our own fund raising. The concept is simple. Make as much funds as possible with the least expenditure. We tap the multicultural and multinational character of Delhi city through an annual sale of orchids and other exotic flowers obtained as donations from within India and other countries, many of whom are organizations similar to ours. The children of the Center do the selling and in the process by being their own natural selves are able to explode many a myth and superstition about people with mental handicap and create long lasting sensitivity to their problems. This effort provides us with a modest income but more valuable is the awareness in the general public, who visit and interact with our children and the good will generated.
 
When SAMADHAN was launched in the early eighties persons with mental handicap were covered under the outmoded Lunacy Act of 1912. A legacy the British left us. From this situation to the present Equal Opportunities Act of 1996 is almost a century. What has happened in this period? With specific reference to persons with mental handicap the Jomtien Declaration in China of 1993 followed by the Salamanca Declaration in Spain of 1994 made global awareness possible and consequently a global refocusing on the RIGHTS of persons with mental handicap as the core issue. But what has been happening in India? In 1984 The National Institute for the Mentally Handicapped was constituted with the mandate for policy and program formulations and as advisor to the Ministry of the then Social Welfare. It was only after The International Year for the Disabled in 1992 that the national spotlight shone on the disabled after a long spell of being kept waiting in the wings. Much activity took place after this. Eleven District Rehabilitation Centers for the rural disabled, four Regional Training Centers and seventeen Vocational Training Centers were initiated in different parts of the country .In an effort to promote economic development of persons with disability very recent policies have set up a National Handicapped Fund for Disability and in 1999 a Bill introduced in the Lok Sabha in 1995 has been cleared to set up a Rs.100 crore National Trust. The Rehabilitation Council of India Act of 1993 was set up to enforce uniform standards of training of professionals. A Bridge Course to train those already working in special schools but lacking formal training was begun in 1998 but is now under review. However it is the comprehensive “ Equal Opportunities, Protection of Rights and Full Participation “ Bill, passed by the Parliament as an Act in December 1995, (the Disability Act) which holds out most hope. The purpose of the Act is to fix responsibilities on the Central and State governments to provide the full range of services indicated in the Act.  It covers Prevention and early Detection, Education, Employment, Research and Manpower Development, Social Security, Affirmative Action. Five Core Groups have been instituted to ensure implementation of the provisions of the Act. Most heartening is the recognition that disability needs a multi sectoral approach and an inter ministerial Committee has been formulated. Specific posts have been created such as the Chief Commissioner and State Commissioners. Since its inception sixteen State Coordinating Committees (SCC) and fourteen State Executive Committees have been constituted.

One is aware of the extreme difficulty in adhering to the statutes of the Act and that this gargantuan task needs consistency, dedication and imaginative effort.  However five years down the road the wide gaps between concept and actual implementation are still glaringly present. All these measures supposedly include persons with mental handicap. But the question, which haunts us, is “Where are persons with mental handicap in all this? “The answer is that the mentally handicapped are still the most negatively affected .The National Sample Survey does not record their existence .A survey is due in 2001 but indications are that once again persons with mental handicap will be denied their very existence as citizens of this country. Even the Employment Exchange and the special cells set up for persons with disability deny registration to persons with mental handicap though not to the other disabled. Consequently they lose out on unemployment benefits promised in the Disability Act since this requires a certificate of registration from the Exchange .In fact 3% of government jobs are reserved for other disabled persons but not for those with mental handicap.  The National Trust Bill still awaits finalization. The attempt to increase the number of special education teachers through a one-month Bridge Course is now on hold and under review. In light of global thinking today and the advent of Inclusive Education efforts could perhaps have been made effectively if teachers in mainstream schools were trained in basic skills to work with children with disabilities .We already have a successful Integrated Education system which was launched by The Ministry of Education in 1997 which operates in certain rural sectors. Inclusion is but a step away .So while both attitudes and consequently approaches have changed and are more empathetic and disability friendly and there have been sincere efforts to improve facilities for persons with disability, much of it languishes for want of a national program on creating an awareness on the ACT itself and thus preparing the ground for implementation. A large percentage of the population are unaware of even the concessions available for scholarships/stipends, disability pension, unemployment allowance, conveyance allowance, travel concessions (bus, train, air) tax exemptions and other facilities. Having said that we come full circle once again to how much of these are applicable to persons with mental handicap?    

When I began in Dakshinpuri the lack of established support systems and health infrastructure was evident.  The structure and social dynamics of this colony indicated that I should begin with something that would be tangible, that the community could see and visit.  So, the very first service was a comparatively safer approach. Although my German experience pointed to community programs and early intervention we started with special education.  My inexperience led me into some amusing situations like the time I distributed colorful leaflets announcing our support only to find them being used as fancy wrappers by the many small shops, which were, called so correctly “ bread anda “ shops.  In a community, which saw mental handicap as Gods wrath and Karma, or the evil eye, this was the wrong approach. What was needed to rectify this was creativity, imaginative circumvention of problems and above all resourcefulness. The obvious answer was to make the message as entertaining as possible. Puppet theatre proved to be exactly what I was looking for. Jan Madhyam, another NGO that like SAMADHAN was also just starting work at this time, translated my message into lively dialogue and action, providing excellent entertainment and information at the same time. Our message was simple. It said, “ Mental Handicap is NOT God’s punishment for sins. Mentally handicapped children can be educated and trained depending on their potential .SO, GIVE THEM A CHANCE” The puppet show had a very positive outcome. The special advantage of this kind of an awareness creating approach was that it allowed audience interaction directly with the puppets. In an area devoid of other forms of entertainment and with cable T.V.still in the future, our puppet shows drew large crowds. Two to three hundred people in the open maidans were normal.

Gradually, women started coming to us. “ Was it true’’? They wanted to know.  “Can my Munni sit up even though she is two years old and shows no signs of doing so”.“ Can Ramu start walking”?   “  Behanji ‘, they said, “ Is it some new kind of medicine” “Is it an injection”? ‘. Is it expensive”?   It was always the women. The mothers. The most often repeated question was “ Was it my fault”? Our initial inputs therefore were of a necessity counseling in response to the sheer needs and the guilt that had been kept suppressed and fed on vague fears and superstitions for so long. What we had to give in those early days were patient listening, being available everyday at a given time, and sharing whatever information and knowledge we had .It was the consistency of support which laid the foundations of our credibility.

Stories came tumbling out like a torrent. How one woman had been forced to allow her husband to marry again so that his second wife could give him a normal child? How another was sent back to her village because she had brought “ bad blood “ into the family. The mother in law of one woman had ordered that the baby be left behind at a local mela and the woman beaten up when she refused to obey. We heard ghastly stories of the many ingenious ways in which children like this were done away with.  Throughout this first experience, I was fortunate to have my very first volunteer, Raj Kumari Kaul with me. The mother of a Downs Syndrome son, she willingly offered her support and with great enthusiasm took over the administrative responsibilities of the fledgling SAMADHAN. She had just retired as Joint Secretary from the Ministry of Commerce and brought with her considerable skills of management as well as the very valuable first hand experience as mother of a son with mental handicap. She gave me consistent and devoted support right up to the time she passed away of cancer in 1993. It was thanks to her that I was able to communicate meaningfully, since in those days my Hindi learnt out of sheer necessity was a singularly South Indian hybrid.

The awareness exercise through puppets helped start a unit for special education. We began with two teachers and today have five trained and experienced teachers with a group of seven children each. As a matter of policy the number of children in the special education is kept to a maximum of thirty at any given time. This makes for quality inputs from the teachers and small easily manageable units are preferred in spite of the temptation to chalk up more impressive statistics. It is a matter of pride that today all the teachers are able to prepare educational plans for each individual child and carry out goal based curriculum planning on their own. They also carry out basic therapeutic interventions under the guidance of the professionals and periodic orientation to provide up to date information. The child therefore gets education as well as therapy every day and is not dependent on the visit of the professionals, which is on a consultancy basis.

Our need for trained teachers prompted our first teacher-training program in 1987 for trainees from Dakshinpuri. This was before the days of the National Institute for the Mentally Handicapped or even before the regular training of special teachers had been recognized as a need by the government.  With the advent of the National Institute we have increasingly used their excellent teacher training manuals. Our teachers had to confront situations where the child came to school unwashed or even without cleaning their teeth. They had to face irate mothers who complained that the child had not picked up anything at all and that sending “ this one” to school was a waste of time. So the training module had to be designed with the needs of our trainees in mind. It was a one-month program with visits to local schools as practical inputs. Apart from the traditionally accepted curriculum which is the norm today we added the making of educational aides using throw away materials and for specific goal related tasks, some counseling skills and community and family interaction. An added component today is Drama and Movement Therapy. Competitions using throwaway materials have proved that our teachers did not lack in imagination or creativity. The practical use of it is that the mother could be asked to make similar aides at home rather than buy expensive plastic and wood toys, which was beyond their means. We have not conducted more than two teacher-training programs since we have very little staff turn over. Most of the teachers we trained in our first program are still with us. We do invest considerably in teachers as well as community workers and nurture them through periodic orientation programs, talks on a variety of subjects, videos and slides spread over the year as well as opportunities to attend seminars and workshops on relevant themes.  An “ Experience Sharing Workshop ’’ is organized to provide a platform to share what they learnt at the workshop they attend for not everyone gets this opportunity. This gives training in making presentations and answering questions. Picnics and outings when the whole organization joins in does add an element of fun and a chance to get to know colleagues as people rather than designated staff.

Since it was a gradual evolution of services, one unit led logically to the next. Thus from special education we went to Early Intervention in response to the parents who were coming to us with infants and preschool children. At this time there were absolutely no services for this very vulnerable group of children. About 60 % of deliveries were still conducted by the Dais and many a time we were brought into the picture only after much shopping for services had been done and all the Gods propitiated .The EARLY INTERVENTION program evolved from our original HELP THE HANDICAPPED AT HOME PROJECT, which we called the 3H project, started under the guidance of Dr. Peter Woods in 1986. Dr.Woods is presently the General Manager of the Bry-Ny-Neudd Hospital in Gwynedd County in South Wales. He is an acknowledged expert on the Portage Program which is a checklist first introduced to the disability world by the University of Wisconsin, U.S.A. Dr.Woods conducted three training workshops for us between 1986 and 1989 and generously used his annual holiday time to share his expertise with us  .The Portage is a simple task related check list which a worker uses with the mother to establish the functional level of the child. This enable the administration of planned work schedules for tasks the child Cannot yet does.   It could also be administered by any one and did not need professional skills. The 3H Project helped us reach out to the infant and the preschool child and was a forerunner of the present format of our early intervention services. It anticipated the WHO model of service delivery of CBR (Community based rehabilitation).

The 3H program was first started as an experiment in urban Delhi with volunteers who were educationally and economically better off than their Dakshinpuri counterparts. It is interesting that in spite of this advantage, this initiative did not take root since social and other commitments often interfered with home visits to client families. Although the need was equally in urban Delhi and in Dakshinpuri only three volunteers opted to work in the low-income area. Nevertheless about sixty families were identified and twenty-three received our support for about two years. The list of client families had been painfully put together in the early years when lacking any source of information I visited as many facilities as possible in Delhi offering services for children with mental handicap and copied down the names of those they had not admitted. This list of about two hundred families served as my first database and came in useful when I started the Vinobapuri program.

 The translation of the Portage into Hindi by the National Institute for the Mentally Handicapped, although available only much later, never the less helped in shifting focus from urban Delhi to Dakshinpuri. Over the years the 3H Program changed in response to identified needs and the Portage itself were amended to suit our requirements. Today it is a dual program, which is both Home (community) and Center based.   It reflects the thinking that it is better to equip parents with basic skills rather than create dependency on a professionally intensive support system. In practice it is the transferring of skills in home management of the child to the mother or caregiver. Trained community workers from the target area undertake it.  Since there was no suitable curriculum available at this time, which catered to trainees from a low socio- economic background and with minimal education we had to formulate our own and incorporate the Portage.

Again, in the absence of available training modules we designed our own training which was different from that of the community workers. It had to suit both community and survey workers.  It is practical, down to earth and participatory in nature and introduces disability and specifically mental handicap but focuses equally on family and community dynamics in poverty related handicap and leads on to the implementation of the Portage system of service delivery. We also developed our own visual aids such as slides and a training video, which was, shot on location in Dakshinpuri itself. It illustrates the role of a community worker and how she can help both mother and child. The short theoretical input is offered either through two full days or two hours a day spread over two weeks depending on the convenience of the trainees. Since they are usually a mixed group of married women and girls in the crucial waiting period between high school and marriage they face responsibilities of home, demands of husbands and children and very often the need to get approval of parents, husbands or mother in law. Mundane things such as the municipal supply of water available only at fixed times makes other commitments difficult. We are sensitive to their specific problems. The women who finally do undergo the training with us circumvent all these problems. This in itself is enough to prove their motivation.

The core of the training however is the one month practicum mandatory to both teachers and community workers. The trainees are sent into the community to conduct a survey of specified blocks using the Portage Checklist. This first hand experience is a source of rich educational experiences. The trainees see effects of discrimination, negative attitudes and lack of services. Most of all it opens their eyes to the needs of families in their own community, of which they are a part but unaware of the very different aura which surrounds affected families. On the completion of this one-month period they return with more than theoretical classroom teaching could have given them.

Trained workers are then placed in families with children in the 0 to 5 age group with basic mental handicap on a one to one assignment. Beginning with one child and one family, placements are increased as the community worker gains in experience and go up to up four children per week. Each client family is visited once a week for about two hours and the worker follows the portage Checklist.  Weekly meetings with a Special Educator and Psychologist provide constant support. Although some input on listening and communication skills is also given, the community workers very often face situations, which can only be resolved by intelligent use of their imagination and creativity. For instance they have to be supportive to the family without getting emotionally involved for visits very often require that the Home Intervention worker lends a sympathetic ear to the difficulties the mother faces.  Many a time they face unpleasant situations of anger, teasing and very often a negative mother in law.  The workers access the center based support service when a mother or a sibling needs counseling or therapeutic help and arrange for them to see the appropriate professional. When the child has learnt preschool skills the multidisciplinary team in the Center, conduct the assessments, screening and diagnosis and the child is either admitted to our own special education unit or referred to other agencies if we cannot provide the kind of support needed.
 
The concept of Inclusive Education has had a gradual influence on our thinking. Contacts with other organizations in underdeveloped countries using this concept made us review the special education set up which functions in a traditionally segregated way. We firmly believe that many of the children who are mild to moderately mentally handicap as well as all children with physical disabilities should be in mainstream schools. After all if we had the opportunity to do it all over again from scratch, will we deliberately segregate children with differing functional abilities? It also makes for good economic planning to stop repeated spending on the special facilities necessary for segregated education when for far less you can equip present educational systems with skills and infrastructure to provide these same special facilities with added benefits to all children whether normal or disabled.  In an effort to introduce inclusive education we have made a small beginning by admitting all children with disability as well as normal. Each teacher now has a group of seven to eight children with different disabilities and different levels of functioning. Teachers have been supportive and have come up with innovative ideas to make this experiment work, such as peer group teaching. However this defeats the purpose of inclusive education and is at best reverse inclusion. We are aware that for some children inclusion may never be possible and will continue to admit those who require individual support. Going the inclusion way is a major step and though we subscribe to the philosophy we have yet to plan a feasible way of establishing it. Our main difficulty arises from the fact that educational institutions in the country are not thinking inclusion.
 
An extension of our home intervention through community based programs resulted in the concept of SATELLITE CENTRES. We reach out to neighboring low-income colonies with the nodal unit continuing in Dakshinpuri. One such center in Sangam Vihar has been established and provides early identification and intervention services supported by the multidisciplinary team, which visits on fixed days. The Sangam Vihar Center is an example of direct community initiative.  The entire exercise of conducting the survey to identify families with children who were disabled in any way, identifying community workers, organizing their training and finally the placement of workers in individual families has been undertaken by one of our teachers from the community. We have twenty-three families now on the Home Intervention program at this center with a work force of one coordinator and three community workers.  The survey in this area since it began in 1998 has contacted approximately 10,000 families and about 220 children on the home intervention have been provided with either direct support or referrals. For the same period in Dakshinpuri, the survey has contacted approximately 3000 families and 1607 children benefited from the Home Intervention.

In 1993, we were able to move to our own building thanks to the generosity of LEBENSHILFE and later British Air. Owning our own accommodation has given us the freedom to add services, which need a fixed location. A Rehabilitation Clinic thrice a week, a five-day Special education and vocational training unit are located in this building. The Clinic is a point of referral to the community workers where professional expertise is made available for their client families and rehabilitative measures for the child is provided. The five member multidisciplinary team consists of a psychologist, a special educator, an occupational therapist, a physiotherapist, a speech therapist and an audiologist. Initial Pediatric assessment diagnoses the nature of the need and the child is then directed to the appropriate professional for specific intervention followed by counseling and guidance for the family. Medication if indicated is provided at the Center and if surgery becomes necessary arrangements are made with government hospitals where free facilities are available. Since all therapies as well as professional consultancy is provided in the center it minimizes expensive and repeated trips to hospitals. These services are also available to the mothers of the children and to those already admitted into our Special Education and Vocational Training Units. However, functioning in a vulnerable environment enhances our responsibilities. It is not a mere matter of professional assessments but empathetic listening, sensitive handling of fragile egos and coming up with suggestions which can be implemented with minimal input of time and money.   The Clinic started functioning from our Center in 1989 and was originally intended only for children with mental handicap. Sheer necessity directs us today to see all children whatever the disability and increasingly normal children as well.  To date more than five thousand children have been seen by the professionals and have been either referred to other agencies, admitted in our own special education or vocational training units.

It was the concept of ecology based curriculum which helped us to start a woodwork unit as our first vocational training program. Children from the Special Education Unit are automatically sent on to Vocational Training if the professional team recommends it.  Since carpentry seemed to be much in evidence in the area we started a small wood work unit .It soon took on a distinct character of its own since many parents required that their adult mentally handicapped children should earn some income.  To circumvent the inability of our parents to buy expensive educational aides we designed a less costly alternative. The MUPET, an abbreviation for Multi Purpose Educational Tool is a set of sixteen wooden blocks and twenty-four square wooden beads. It can be used for teaching cognitive, communication and language skills. We have shared this with many organizations and reports indicate its usefulness.  Although we did make these for many years the high cost of wood and the fact that it is not environmentally friendly has started us searching for alternatives. So we turned to papier-mache. This has gradually replaced the MUPETS and the colorful handicraft items have been successfully sold in melas and bazaars. Encouraged by this we approached the Cottage industries in Delhi and were able to obtain small orders on a consignment basis. To meet deadlines we now had to increase the speed of production as well as the finish. So parents of the children were inducted as part of the work force initially and later persons with any kind of physical disability making this a truly inclusive group of people. This move aided the gradual placement of four of our adolescent students in regular jobs and one in a training situation which will equip him with skills of office maintenance and will qualify him to join us as part of our administrative staff. The day when a local shopkeeper came to us with an offer to employ one of our students as his assistant in his ration shop justified the awareness and community initiatives we had taken.

The positive outcome of this effort is the strengthening of the Mothers Group. Initially the mothers met every month to discuss the problems of their children with the teachers but were not actively involved in any of the work at the Center. To make them an active support group we formalized it as the Dakshinpuri Punarvas Samithi with mothers taking on different responsibilities. Their first assignment was to increase the efficiency of the vocational training unit by adding their skills to those of our students.  The group comes in every day to work along side our students. As the group grew both their own involvement as well as interest in the overall work of the center increased. At one of the regular meetings the question of malnutrition was discussed and the suggestion which came up was to make a simple low cost nutrition supplement. The result is NASHTA, an easily prepared breakfast food distributed in the form of ladoos. The Nutrition Foundation of India has certified its high nutritive quality.  The Samithi is today an active participant in all events of the Center. We give nominal cash incentives but have not as yet streamlined the high market potential of the handicraft items or of Nashta.

In 1989, concerned about the lack of opportunities for recreation or leisure for adult and adolescent persons with mental handicap I started a Saturday Club, where we met for a few hours of leisure and recreational activities. An American friend, Sylvia Smyth, helped expand its scope and range far beyond a mere activity. The new avatar was the A.R.T.S. An abbreviation for Arts, Recreation, Theatre and Song. Fr.Agnel School in South Delhi permitted use of their rooms and for four years we provided all those who came to us with a structured program using both the visual and the performing arts. Music, dance, drama and any creative activity gave our participants an opportunity for self-expression, in a place which was safe and protected in which they could do and be whatever their fancy dictated. The results were astounding. Even severely handicapped persons began to show improvement in their skills of communication with positive impact on other areas of behavior and learning. This experience began the search for someone to help us explore this further. The search ended with Dr. Sue Jennings, founder of the British Association of Drama Therapists in London. She agreed to conduct workshops to introduce us to the concept of Drama Therapy, a medium which used Drama and its components in clinical, remedial and community settings with people who are troubled or unwell .All skills from drama are selectively applied to enable verbal and non –verbal resolution within a dramatic structure.

Drama Therapy has become an integral part of our education in Dakshinpuri and documentation shows how effective it has been with our children who are all under stress of one kind or the other .We have expanded its scope to include the mothers, teachers, community and in fact any client group who feel the need for release and healing. Four separate workshops, which we shared with other NGO’s in Delhi, have equipped us to offer foundation courses in Drama Therapy.  We have also put up four public performances in Delhi for the general public. Shows have been as diverse as stories from the Panchtantra, St. Saens’ Carnival of Animals, an original script called The Magic Garden and the Nativity Play. Similar support from Mrs. Janice Sutton, who was Counselor at the Canadian Embassy in New Delhi between 1983 to 1985, helped us publish our first Newsletter. Christened SAMDHAN NEWS it highlighted our own activities and provided a platform for sharing news with others. Janice saw even then that we needed to think about future relationships, future programs and that getting and sharing information was crucial to our outreach.  SAMADHAN NEWS helped to disseminate information and was an excellent vehicle for publicity.
 
Attendance at several Asian and International Conferences put us on the international map and paved the way to our affiliate membership in The International League of Societies for the Mentally Handicapped.  Now called Inclusion International, with its headquarters in Ferney Voltaire, France, this is an NGO with members from 190 countries and advocates for persons with mental handicap primarily but is increasingly becoming a cross disability organization.  We are also members of the Asian Federation for the Mentally Retarded (AFMR). SAMDHAN is AFMR’s elected national representative for India and is a member of the AFMR Executive Body. This has initiated networking with several Asian countries. A specific example is our link with the Bangladesh Protibondhi Foundation, which is working towards a SAARC focus on the mentally handicapped. Locally, efforts are on to link up with other NGO’s in the area, which can provide the expertise we need. These are facilities for ante and prenatal care and direct contact with the Dais in the area. There are obvious benefits in such interdependence.   

We have a very representative selection of books, videos, conference reports and journals in a modest reference library. We provide information and documentation on request. Our website www.indiasocial.org/samadhan now makes networking easier. We have also attempted networking through specific theme seminars on various topics. Some of them have been for industrialists on employment for the mentally handicapped, seminars for parents on sexuality and its management. However, now we find it more relevant to share experiences through workshops and take on the catalyst role. Workshops in early intervention in Bhuveneshwar, on identification and intervention for disability to the staff and dais of The Immanuel Hospital in Utraula, Bihar, and Lalitpur have been conducted and other requests are pending. We work on two levels as far as policy is concerned. The local community levels where we try to change traditional approaches and attitudes towards disability and mental handicap in particular and the government level where we try to influence policy decisions. To this end we have begun an awareness exercise with the local Delhi Government schools in Dakshinpuri on inclusive versus segregated education in a small controlled experiment. Our aim is to have some impact on local governance so that at least some attempts are made towards the Inclusion concept.
 
When we began constructing the building in Dakshinpuri we had to do so under police protection. So problems have been a part of our life here. As are innovations. We have learnt the important lesson that resourcefulness, an ability to be flexible and creative use of the imagination are necessary ammunition when working in areas of low income. A close second is bull dog like tenacity.  Go under, over, around problems but never say,  “ THIS CAN NOT BE DONE”. It can be done. In a different way. A willingness to build around the potential and strengths of people, whether normal or handicapped, putting aside preconceived notions such as uneducated and poor people can never become agents of change. They do. Given the opportunities and the awareness. Certainly we have concerns about the employment of our adults, the fate of those who lose their parents, the continuity of funds to sustain services. I also have a strong faith that nothing happens by co incidence and that the same God who brought me thus far will sustain my work and me.  

For the future, our direction is sure. The way ahead is through paradigm shifts. To go from charity to Rights. From segregation to Integration. From Integration to complete Inclusion at all levels of life.  From Institutions into the community. From individual NGO’s to community owned services.  Our plans include the empowerment of key people with the motivation and the ability to carry our work forward. We identify the woman and her strength as a change agent and the key player in the years to come. Investing in her as an individual in her own right will build a work force with the skills to take on responsibilities. We see communication as something, which can not be separated from its interactive relationship with the community. Communities create their own distinctive form of communications. Our endeavor therefore, is to create communication channels through existing groups in the target area, such as the Yuva Uthan Parishad, a group of young men and women who tutor school children after work hours, our own women’s group, members of local puppet and theatre groups, other NGO’s in the area as potential partners to increase awareness and outreach.  An aware and socially committed community can then work towards policy changes that will make for an enhanced quality of life for persons with disability and mental handicap. We see our Special Education Unit as a brief training stop for children who will be referred to local mainstream schools .We will replicate Satellite Centers and work has already started in Dwarka in West Delhi, where we have purchased land from the DDA and beginning construction of a building. We plan to house a Rehabilitation Clinic, facilities for training of community workers from other low income areas with board and lodging facilities and expand our present library to a Resource Center which will not only disseminate Information and provide documentation but resources of manpower and materials for disability. Finally I totally ascribe to the beautiful sentence in Richard Bach’s book, Illusions, “ that there is no problem which does not come without a gift in its hands.”  It is for us to find these gifts.
 
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