The Shishu Sarothi story

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Shishu Sarothi, a premier Center for Rehabilitation and Training for Multiple Disability, is a registered non profit voluntary organization working in the Northeast region of India since 1987.

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The Shishu Sarothi story

  1. 1. THE SHISHU SAROTHI STORY Mrs. Ketaki Bordalai Shishu Sarothi started its work in a very modest way in 1987, with just two children, a few volunteers and parents and one trained teacher, from a spare room in one child’s grandfather’s house. The intention was to start a service for children with cerebral palsy for whom there was hitherto no professional or specialized service available. Cerebral Palsy is a condition that results from brain damage that could occur in any of the pre, peri or post natal stages of early childhood. The primary causes could range from malnutrition and infections during pregnancy, to prolonged labour, premature delivery, birth anoxia, neonatal jaundice, or even infections and illness like meningitis or encephalitis or even head injury during infancy or early childhood. It manifests itself in various ways, including spasticity of muscles and limbs, athetosis or ataxia. All these basically affect the physical movement and gait of the child. Depending on the location and extent of the brain damage, the child may have associated problems of mental retardation, speech, hearing and visual impairment, and epilepsy too. The primary problem however is physical. CP is often referred to as a cruel and tragic condition that knows no barriers of caste, creed, or economic status trapping intelligent minds in disobedient bodies. Services Shishu Sarothi began its work with simple interventions that included special education, physical management, and training in daily living activities. Its services including running a centre for special education on the one hand, for those children that could
  2. 2. come regularly, and a parallel outdoor service for children from outside the city and those that couldn’t come regularly. The Centre for Special Education is run to this day on the lines of a school, but caters to the acute and extraordinary needs of children with cerebral palsy. The grouping is done on the basis of age and mental ability, so the classes range from Playgroup to Functional and Functional Academics and there is a Special Teaching Unit for the severely disabled children too. The pedagogy used at the Centre includes detailed assessment and child specific programmes that take into account all the needs of the children, ranging from physio and speech therapy, special education, and daily living skill training. In fact the calendar of events at the Centre is a busy one, with numerous activities ranging from routine classroom activities, to computer literacy, dramatics, music, craft work, domestic science, etc. The children have won many laurels in competitions at various state and national level forums including art and singing, skits at the National Childrens’ Festival, Abilympics etc. Today there are 90 children who attend the Centre regularly. Saurangshu Bhattacharjee, an old student of Shishu Sarothi, has passed his Higher Secondary from the National Open School, and is doing his graduation under IGNOU. Madhu Agarwal and Arunav Saha, two ex students are working at Atma Nirbhar Ek Challenge, an organization where they package and sell tea and spices. Simi Kalita, Runu Medhi, Silsila Das and Meghali Rajbongshi, all ex students, of the CSE, are currently employed at Shishu Sarothi itself as Teaching Assistants. Around 15 students have been integrated into mainstream schooling and are progressing well. The Outdoor Service arm of the organization caters to the needs of very young (0-2 years) children and those who are outstation, or are unable to come regularly. This service comprises diagnosis, assessment, counselling, therapy and demonstration of homebased rehabilitation programmes. They are monitored closely and the management programmes are upgraded over time. In course of time the regular children who avail the services and need special education inputs, are referred to the Centre for Special Education. This wing has been doing yeoman’s service over the years particularly in the
  3. 3. area of early intervention. A large number (80-90%) of the children coming to this service are in 0-2 age group. Just last month 3 newly born babies neonates (< 1month) came to the OSD. Many of these children are referred by the medical professionals themselves. This is an encouraging thing, since early intervention is crucial in minimizing the problems and preventing a minor disability from becoming a major handicap. At least 2000 children and their families have been seen and counselled with appropriate home management programmes and follow-up in this service since inception. A number of children have been able to improve their abilities and enter mainstream schooling with our support and counsel. Efforts have also been made in the past to initiate community-based programmes in outlying rural areas, and small centres were supported at Changsari, Sipajhar and Jagiroad for some years before handing these back to the communities. In response to a sorely felt need and based on the experience gathered over the years through the different services, a Training Division was also initiated. This consolidated the earlier short term training programmes that were held from time to time to provide baseline training and upgrade the skills of the staff at the centre. Currently the organization is running a RCI recognized 1 year Undergraduate level Diploma Course in Special Education for teaching children with Cerebral Palsy (DSE-CP). It is also a Study Centre for the RCI distance mode B.Ed (Sp. Ed) and other related courses . Advocacy One of the objectives of Shishu Sarothi is to create public awareness about the nature and needs of children with cerebral palsy. Over the years the organization has made considerable strides in this arena, with its active involvement in Pragati, a confederation of NGOs working in the disability sector and the National Disability Network. It has organized various programmes including celebration of World Disability Day on 3rd December every year, and numerous other seminars and workshops to highlight the needs of this sector. Projects have been taken up to translate and disseminate literature on the Persons with Disabilities Act 1995, a landmark legislation with wide reaching provisions.
  4. 4. A recent new project is the running of Disability Law Unit in collaboration with the National Centre for Promotion of Employment for Disabled People (NCPEDP), Delhi to create more awareness about legal rights of persons with disabilities, and to facilitate legal counsel for redressing grievances, and advocate for disabled friendly policies. The DLU was instrumental in assisting a bright young student, Irshad Alam, in admission in the Jorhat Engg. College last year. How was it all done? The various services and programmes of Shishu Sarothi have been possible because of the support and generosity of donors, both corporate and individual, sponsors and many funding agencies. The list of donors, benefactors and grantors includes leading members of the corporate sector (tea, petrochemicals among others), service organizations like Rotary and Lions’ Clubs, the North Eastern Council, the Ministry of Social Justice & Empowerment, Govt. of India, Indo -German Social Service Society, Concern India Trust, Allahabad, Actionaid India, Rajiv Gandhi Foundation, National Centre for Promotion of Employment of Disabled People, Chief Minister’s Relief Fund, Bagaria Charitable Trust, Dr. Manmohan Singh’s and Ms. Basanti Sarma’s MPADF, SJ Jindal Trust, UN Womens’ Guild, and the many individual donors and sponsors whose contributions kept the organization going through thick and thin. The State Govt’s generous allotment of 3 bighas of sarkari land at Ulubari helped to create a permanent premise for disseminating the services of the organization. The approval of the National Committee under Section 35AC was another milestone in enabling the organisation to raise resources for its building project. Fundraiser shows have been held from time to time to create public awareness as well as raise resources for the corpus and building fund. Renowned cultural icons have come and performed for the cause. These included Ustad Amjad Ali Khan, the sarod maestro, Smt. Uma Sharma, the Kathak exponent, and celebrity and danseuse Mallika Sarabhai, popular singer Usha Uthup and virtuoso pianist Neil Nongkynrih. Each event involved huge effort, but invariably very rewarding in terms of public support and funds raised. Smaller events like annual concerts and sale of greeting cards, Diwali diyas and other craft items made by the children and staff have also contributed in a big way to this end. Additional responsibilities: In recognition of the efforts and role played in the disability sector in the state and region, Shishu Sarothi has been made the nodal centre for the Zonal Committee for the NE Region of Rehabilitation Council of India and the State Nodal Agency Centre for the National Trust, both being statutory bodies under the Ministry of Social Justice & Empowerment, Govt. of India. Shishu Sarothi is also a member of the State Resource Group of the Sarba Shiksha Abhijan Mission in Assam. The recent (2004) receipt of the Ministry of Social Justice & Empowerment National Award for Best Organisation (additional) category in the disability sector has been a shot in the arm of the organization. However, it is humbling to note that although there has been considerable achievement in all these years, it has also come with additional responsibilities, thus compounding the work further. There is still so much to be done….. the woods are lovely dark and deep, and Shishu Sarothi has many miles to go before it can sleep….. __________________________________
  5. 5. The writer is the Secretary and head of administration of Sishu Sarothi, a centre for rehabilitation and training for multiple disability in NE Region. She is also responsible for administration and management of the organisation’s various other social welfare services. Besides, she is the Secretary of RCI’s zonal committee for NE Region, Nodal Officer for National Trust’s State Nodal Agency Centre for Assam and is coordinating a Regional Disability Law Unit Project for advocacy disability issue and legislation awareness.

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