Shishu Sarothi began in 1987 with two children and volunteers to serve children with cerebral palsy who lacked services. It started with education, therapy, and living skills training. Services expanded to include a special education center, outdoor services, and community programs. Shishu Sarothi now serves over 90 children and has trained staff. It also advocates for disability rights and runs training programs. Shishu Sarothi's growth was supported by donors, sponsors, and government agencies.

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. 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. 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. 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. 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.