Inclusion a distant dream for children with Down Syndrome

DS, which is also known as trisomy 21, 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. Reports reveal that every year between 23,000 and 29,000 children are born in India with Down Syndrome, which is the highest in the world, bringing more focus on the need to expand access to education and opportunities to those with the condition. While parents of kids with Down Syndrome seek inclusion, they admit that special schools have offered the most secure environment as most schools don’t have trained teachers to guide children with disabilities. 

Jaitheerth was diagnosed with Down Syndrome soon after he was born. His mother Sujatha Y Mangalvedkar, who was a teacher at a reputed school in the city, decided to admit him in a special school. He came under the wing of LV Jayashree, who is now the director of The Spastics Society of Tamil Nadu. Sujatha says that having taught at a mainstream school she knew only a special school could meet his requirements. Sujatha says, “As a person with Down Syndrome, my son had problems with speech, sight and hearing, apart from learning difficulties. Mainstream schools would have never been able to help him through his disabilities. I knew he wouldn’t be able to fit here.” 

That was more than two decades ago. However, even today special schools continue to be the sole option for children with DS. Shyamala Mohan, Director, Sri Sakthi Academy School for Special Children, says that finding acceptance is rare. “Till they complete primary school, they manage to cope, but after that they need special attention that they get only in special schools. But the problem arises when they begin to work, as they struggle to integrate,” she says. 

Sandhya Krishnamoorthy from the Down Syndrome Association of Tamil Nadu, says inclusion and integrated learning options are far from practical for many. She says, “Even 32 years after we first began the initiative to spread awareness on DS, inclusion hasn’t been possible for most of them. Even those who have made their way to mainstream schools have found it difficult, as teachers feel it is an extra task for them to teach students with disabilities. Many times, parents are convinced that special schools are the place for them.” 

Sandhya attributes the emphasis on performance as a major reason behind the attitude. “There are many things that children with DS are good at and their vocational streak is not encouraged. Why can’t schools work on that and help them grow their talent?” she asks. 

She adds that it is a herculean task for those with DS to complete Class 12 and cites apathy of schools as the main reason. “They can have scribes for exams, but getting the approval from authorities concerned is a huge task,” she says. 

The state School Education Department had carried out training programmes with the help of the Down Syndrome Association of Tamil Nadu a few years ago. D Sabitha, State School Education Secretary, says, “The teachers who had trained in those sessions have gone on to train more people, in the district level. The State Resource Centre in Santhome is also focusing on creating more resource persons.” 

A few government schools in the city have been leading the way for integration. Sandhya adds, “I convinced a family to admit their child to a government school that had a congenial atmosphere for their son. They were initially reluctant, but now they are extremely happy with their child’s progress.” 

Among the very few private schools that offer a supportive environment is APL Global School, in the city. Kiran Merchant, principal of the school, says, “It is the responsibility of the school to create an environment conducive for every child. Including children with disabilities is mutually beneficial. We have a specially trained set of teachers, who identify the needs of these children—both social and cognitive.”