Golden hearts that help special children : Bangalore

A regular day for special children at Spastic Society of Karnataka


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Spastic Society of Karnataka (SSK) has been working for over three decades to assist integration of disabled children with the mainstream community. It works tirelessly to create awareness among general public about mental disabilities to aid early detection and intervention. Rukmini Krishnaswamy, director, Spastics Society of Karnataka, says,"Everything we do here is in the realm of human rights. These children are denied basic rights like education, the right to be understood, the right to be included. We are working towards changing that."


Tele Rehabilitation

SSK is now focusing on 'tele rehabilitation', actively pursued at their centres in Mayasandra, Ramanagara and Kolar. Tele rehabilitation reaches out to people with  neuromuscular disorders and developmental disabilities. Via the Internet, parents and community workers can video conference with medical consultants based in Bangalore. A cost-effective programme, it saves parents the cost, time and effort involved in travelling to the metro. "Many children with disabilities go undetected and uncared for because they live in remote areas. Our tele rehabilitation programme is a means to reach out to them," says Krishnaswamy.


Rainbow Centre for Autism
SSK's Indiranagar premises also houses the Rainbow Centre for Autism Spectrum Disorder. Autism is a complex neuro-developmental disorder that manifests in children by age three. Such children can hear, see and feel yet have difficulty in understanding and expressing what their senses tell them.


"For parents with autistic children, the diagnosis comes as a shock. We provide five weeks of hands-on training to help parents better understand their child, how to communicate, behave and assist in the learning process of the child," says Nalini Menon, who heads Rainbow Centre for Autism.


The degree of autism may vary from mild to very severe and is hence it is known as Autism Spectrum Disorder. Government of India recognised autism as a disability as late as 1999.


"I teach autistic children above the age of 13. We focus on pre-vocational activities that will help these children be self-dependent. We start with a short prayer, go into a session of physical exercises, after which we have mood exercises where the children assess their emotions. The rest of their time with us, about two to three hours, is filled with basic academics," says Harita, teacher-parent at Rainbow Centre. After a three-year teaching training course at SSK, Harita started off here as a special educator. "We involve them in making items like paper covers, candle wicks, diyas to coach their focussing abilities and build their motor skills," adds Joyshree Sarkar, another teacher at Rainbow Centre.


The rough road

Looking after special children is a challenge but what makes it an overly arduous task is red-tapism. The state government it seem has chosen a blinkered view to autism. Despite the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 listing the disorder as a developmental disability, autism is still not recognised in the list of disabilities eligible for social security programmes like pension and job reservation in Karnataka.


"Disability stereotypes have led people looking  at only physical symptoms, making it difficult for people suffering from an intellectual disability like autism to even be acknowledged," says Menon. 

What will help


"Parents need to lobby to get the government's attention. Parents of autistic children understand the problems they face on a daily basis better than anybody else, and if they strongly appeal to the government, positive action can be effected," says Simmi Santha, a senior behavioural therapist from Canada, who is looking to open a centre for autistic children in India as a memorial to her late professor, Reeta Peshawaria, who was a clinical psychologist at National Institute for Mentally Handicapped. With over two decades of experience in developmental disabilities, she is deeply involved as a behavioural therapist, staging intensive behavioural interventions for children suffering from autism.


"The path to recovery for the child can only begin when there is a strong partnership with the parents. Most therapies are quite expensive. Without a regulatory system in place in India, there is no accountability placed on people or therapists involved in the field. Abroad, if you want to look up a therapist or doctor, details like ratings and examination scores are easily available. Therapists are made to take exhaustive examinations every few years. We have no such system here," says Krishnaswamy. "Systems exist on paper only, there is no execution," adds Menon.


Comprehensive teacher training programmes and training of  community workers is the need of the hour. The Sarva Siksha Abhiyan focuses on inclusive education and focusses on children upto age 14. Once they cross that age threshold, everyone washes their hands off them. This is where vocational training centres can help," says Vijaya Prema, head, education department, SSK.

Vocational Training Centre
SSK has also initiated a variant to home schooling wherein  autistic children are given basic life skills and vocational training. "The children are here from 9:30 am to 3:30 pm. They learn to cook, make paper covers and paper pens. We recently installed a leaf plate-making machine which students will now learn to operate," informed K Anantha Chari, general manager, SSK. "I think awareness is key to everything we do here. The more people know about the various disabilities and our efforts, the more can be done to help these children."

Source : The New Indian Express  , 25th July 2013