Occupational Therapist Vaishali Pai often saw parents struggle in Bangaluru’s overcrowded city buses as they escorted their children with disabilities. The distance to the hospitals she worked in was long, and these children travelled to attend various therapy sessions there. The ordeal was obviously physically taxing for both parent and child. Sometimes the child even had to be carried. It got her thinking about the lack of adequate therapy, educational and recreational facilities in the city, forcing parents to daily grapple with much inconvenience. There was surely a crying need for more therapy centres.
The result is Tamahar Trust, a non-profit organisation working in childhood disability, specifically developmental disability because of brain damage. They deal with 30 types of disabilities. ‘Tamahar’, meaning Remover of Darkness, started in Bangaluru in 2009. The centre is today living up to its name by bringing the light of caring, knowledge and the latest technology into the lives of children with special needs and of their parents and caregivers. The special-needs child, parents and the staff at Tamahar form a whole, which keeps the child paramount. The participation of parents in Tamahar’s programmes is compulsory since they are considered primary therapists after training. Concurrently parents and staff are encouraged to be open to self-improvement and self-care to enrich their own lives.
Tamahar is open to all children regardless of socio-economic background, the same programmes being offered to everyone. Several facilities are made accessible to eliminate the need to travel to different locations for therapy that would otherwise have been difficult for every parent to reach.
They focus the therapy not just on the physical benefits to the child but also on her emotional development, to learn how to be independent and live a joyful, dignified life.
Vaishali Pai has now worked with children with special needs for about 30 years at Spastics Society of India, Mallya Hospital and Vydehi Institute of Rehabilitation and Align Centre before Tamahar. She is a certified Early Interventionist specialised in pediatric rehabilitation and sports rehabilitation. She says, “Children with special needs are under-represented in government policy decisions, and are largely ignored. Given that there are nearly 12 million children in India in this bracket, without taking into account the unreported and the ones in the economically disadvantaged sector, providing them an improved quality of life, education and employment is enormous.”
Data shows that the likelihood of mental disability is higher in the economically weaker sections of society. In India, adequate facilities for mental, social and physical development of all such children and support systems for their parents and caregivers are few and far in between. There is indeed a huge gap to be filled.
For Children
Mental deficiency requires solutions to be tailor-made to each individual. There cannot be an one-solution-fits-all approach. Several factors come into play to gauge mental deficiency, and each must be addressed appropriately so that the child benefits. Mental disability manifests in a spectrum ranging from the severely disabled or intellectually impaired who are incapable of education and vocational training, to the mildly disabled who can be assisted with timely intervention and therapy. Tamahar helps develop functional skills in a scientific manner.
Around 70-75 children, from infants to the age of 21 years attend sessions at Tamahar. Here, children learn in accordance with their level of disability and not their chronological age. Occupational Therapy aims at offering them independence in life, to the extent possible. All children have Yoga and Music therapy twice a week. There are also Dance, Art and Sports sessions at regular intervals. Physio therapy, speech therapy and OT is offered to those children who need it. There are non-fire cooking sessions and classes at the Prakash Padukone Badminton Academy. And all children are taken out on fun field trips.
Early Intervention is therapy for children who test between the mental ages of 1 to 5 years. The teacher observes and bases intervention ‘on the ability, not the disability of the child’ and builds the session up from the level the child is at currently. In the pre-school class, also for children from 1 to 5 years, the focus is to prepare children for schooling. The child takes part in one-on-one therapy for an hour which uses OT and speech techniques. This is followed by a session of one and a half hours for group play and learning.
The Mother/Father Support Group for the pre-school child helps parents understand and accept their situation so they can better support their child. This is also a forum for parents to seek support for all the issues which come up with a special needs child at home.
Once the milestone of mental and developmental age of 5 years is reached, regardless of chronological age the children are in regular Functional Academics. They study English, Kannada, Maths, Social Science and also have extra-curricular and sports activities.
The Pre-Vocational Programme at Tamahar is for special-needs students between 15-18 years of age who have completed schooling but are not yet eligible to join a vocational training course. Instead of losing these precious years, this programme’s curriculum of two years (four semesters) readies youngsters for a work environment. It includes imparting soft skills, social skills, communication skills, continued formal education and sexuality education.
Some children attend after-school individual programmes at Tamahar after attending regular school during the day. This helps support their cognitive development growth.
Summer Camps are fun for the children and their families. They are great stress busters and offer recreation for the child, siblings, and parents. The child builds confidence taking part in activities with the family. This is when new projects are introduced and tested for a possible introduction into the regular programme in the year.
Sheltered Workshop is an employment programme for young adults with severe impairment of IQ less than 35, which makes educational or individual vocational training impossible. It offers them a safe environment to earn with dignity.
For Parents
Training the caregivers is equally essential since understanding their child and her situation results in more effective support. Parents have theoretical and practical sessions regularly. Since therapy is customised for each child, they train parents for continuity at home, as therapy must not stop when the child leaves Tamahar’s premises for the day. The process is continuous, and parents are the best guides when trained.
They also need help with the financial responsibility that comes with caring for the differently abled child. Tamahar helps by building awareness of government and financial schemes.
Parents of special needs children have to face issues such as social stigma, burnout and stress. Caregivers to meet their own physical, mental, emotional and financial needs besides those of their wards. Without this self-care, even the child dependent on them would not benefit fully. Since the special needs child and the family are an integral whole, it is imperative that the family also has access to therapy and training.
A caring family atmosphere has a calming effect and works best for these children. Tamahar offers caregivers counselling sessions with a clinical psychologist, opportunities for education, reading material and group outings to foster a sense of fellowship and a window for recreation and relaxation. With the Respite Care programme, parents can leave their child for three to six hours in the safe environs of Tamahar and use that free time without worry.
Human Resource Development
Several of the caregivers are from lower income backgrounds. The special needs care and education space needs trained personnel all the time. This is a welcome chance for several women to pursue this vocation, provided they enjoy working around children. Tamahar consciously invests in training so the quality of trained care is high. Hence interested women complete their education, stopped for various societal or personal reasons, are trained thoroughly and are gainfully employed in a sector which sorely needs trained people.
Building awareness in the community
Equally, the community at large needs sensitization about issues of brain damage and of the children with the condition. Tamahar conducts awareness programmes and get-togethers throughout the year centered on awareness and observation dates for particular conditions such as autism, cerebral palsy, and brain injury. This helps focus attention on these conditions and the issues associated with them.
Advocacy
Tamahar believes that we must hear the voices of Indians with special needs so government policy can reflect their needs. To this end, the focus is on Knowledge management, R&D to get a deeper understanding of not just what works but why, for whom and in what context. The data thus gathered is important to bolster the case of advocates of positive intervention for special needs children.
Tamahar has opened more facilities in Bengaluru recently in their quest to reach more children. As a society, we in India need to be more aware and welcoming of the entire population of special needs people in our midst. And we need government policies more in synch with the times, with more inclusivity of special needs people studying, working and living the best lives they can.
Tamahar was audited and certified by two independent bodies in 2017–Social Audit Network, India and Credibility Alliance. Both audits have adjudged Tamahar to be a transparent organization with good governance and also an organization living up to its stated mission and vision of enabling children with special needs and their families to live a happy, healthy and dignified life. Tamahar has been appointed Disability Partner for Disability NGOs Alliance’s rural early intervention project to train organisations working in North Karnataka.
Tamahar Trust
Office: 27/106, 11th B Cross, 11th Main, Malleswaram, Bangaluru – 560003.
Regd. Office: APT-301, No. 23, Venkat Vihar, 12th Main, 15th Cross, Malleswaram, Bangaluru - 560055
