Two years ago, as they were moving to Chennai from Kerala, Pramod and Srilekha had their doubts about finding a good centre for early intervention for their child with autism. She had considered Bengaluru and Mumbai as better options, but their relatives settled in Chennai did a recce on the facilities here, which helped them choose the city.
Today, they are happy that they made the right choice. They are not alone. For Nirmala Devi, mother of 18-year-old Arjun, it was a choice between Delhi and Chennai. After her son was diagnosed with the condition when he was two years old, her brother suggested that I relocated to Delhi.
“However, I decided on Chennai. Ever since we found out about his condition, it has been a long struggle. But each time, we have been fortunate enough to find the right people to help us, be it therapists or special educators,” she adds.
For many like them, Chennai has become a promised land for children with intellectual disabilities--- autism, cerebral palsy, Down syndrome and mental retardation. From occupational therapy to physiotherapy, special educators to developmental pediatricians, there are centres offering early intervention and empower parents.
“We put them through the whole gamut of counselling, and consultations with specialists to get an idea what holds for them in the next three months. Followed by occupational and physical therapy, they are empowered and are ready to go back with a format to work with for their child,” says Surekha Ramachandran, Founder, Down Syndrome Federation of India, the one-stop shop for parents from across India to get equipped with necessary information.
Surekha adds that she doesn’t advise relocation. “You don’t have to give up jobs or relocate. It is equally important to be in their state and stay connected to their culture,” she says.
“Special education schools, integrated schools, inclusive schools, therapy centres and individual therapists for music, art and movement are present in strong numbers in Chennai. Many are doing world-class work. Parents support groups are very powerful in ensuring quality of life for their wards,” explains Nandini Santhanam, Founder, the Lotus Foundation.
The organisations here have been able to work closely with the medical fraternity after the state health department initiated tie-ups, points out LV Jayashree, Director, the Spastics Society of Tamil Nadu, a 36-yearold institution.
“They were open to screening newborn children for disabilities way back in 1991. When it comes to programmatic innovations, we were one of the first movers,” she adds.
What makes Chennai different from the rest of the metros is the readiness of the people to volunteer for the cause, observes Poonam Natarajan, Founder and Board Member, Vidya Sagar.
“I personally know many families from the North, including even Delhi, who relocated to the city to access the facilities here. The kind of volunteers and the network we have here is not present even in the national capital,” says the pioneering special educator.
While Bengaluru has caught up with Chennai, Mumbai has just been able to access big premises for the facilities, says Vasudha Prakash, Founder-Director, V-Excel Educational Trust, that is now working towards residential facilities and group homes.
“Delhi probably has better access to government schemes and grants. But in Chennai, there is a holistic approach that is a lot more organic,” she adds. However, the mushrooming of therapy centres is a worrying sign, points out Poonam.
“Some of these centres may not be doing ethical work. They give therapy to children behind closed doors, keeping parents out, which is not the right approach.”
Another special educator, on the condition of anonymity, adds, “In the Tiruvanmiyur-ECR belt, there are more than a dozen schools that claim to work with those with special needs. Some of them charge as much as Rs 10,000 per month upfront for therapy. But, there are doubts about the effectiveness of these methods.”
BREAKING IT DOWN
MENTAL RETARDATION (MR):
Mental retardation is a developmental disability with an intellectual functioning level that is well below average, and comes with significant limitations in daily living skills
AUTISM OR AUTISM SPECTRUM DISORDER:
Wide spectrum disorder with a variability in socialisation, communication and repetitive patterns of behaviour, interests and activities
A neurological disorder of movement and coordination, it is characterised by lack of muscle tone and posture
Also known as trisomy 21, this is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is characterised by physical growth delays, characteristic facial features, and mild to moderate intellectual disability
The Rights of Persons with Disabilities (RPD) Act, 2016, lists as many as 21 types of disabilites, up from 7 types defined in the previous legislation for the disabled. Intellectual disability is listed as one among the 21 types
Upanayan, a systematic, structured programme for the management and training of children with developmental delays/mental retardation, was developed by city-based Madhuram Narayanan Centre for Exceptional Children. It is the base for the Rashtriya Bal Swasthya Karyakram (RBSK). The centre has also designed a software, Upaneeta, which tracks the progress of each child who are part of their intervention programme for across disabilities
GOVT CENTRES FOR MR
- 31 districts have early intervention centres (except Dharmapuri)
- 250 Special schools for intellectually challenged
- Rs 10,000 as salary grant for two special educators, one therapist
- 5 districts have separate early intervention centres for autism
- Rs 1,500 maintenance allowance for mentally retarded