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Reema Gupta, Prachi Deo and Sudarsana Kundu

Reema Gupta, Prachi Deo and Sudarsana Kundu  

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Prachi Deo, Sudarsana Kundu and Reema Gupta hope to connect parents of special children with ‘Nayi Disha’

It is often seen that parents with children of learning and developmental disabilities run pillar to post in finding services that gives information about the school, doctor or services that suit their child. This lack of information can be quite frustrating too. That’s where Nayi Disha Resource Centre (nayi-disha.org), steps in as an online resource platform that provides information on schools, therapies and services and informative articles. Prachi Deo, Sudarsana Kundu and Reema Gupta share this ‘nayi’ story. While Prachi is the founder and Sudarsana is co-founder, Reema (co-founder) works with the Dean’s office at ISB in Gachibowli.

How it began

The concept of Nayi Disha took shape during an evening walk between Prachi and Sudarsana. While Prachi experienced the challenge parents face in bringing up a child with special needs because her brother has Down’s Syndrome, Sudarsana was drawn by her interest in the area of equality and inclusion. Reema, a mother of a special child, shares the onus was to provide a choice. “When we talk about children with special needs, a variety of therapies that will work for them needs to be discussed. One needs a host of service providers and it was one of the biggest challenges faced by us and also the community of parents that we have interacted with.”

With the availability of different service providers, the team was clear about creating a solution that will cover a larger number of parents rather than one single service. “Given our expertise and backgrounds, we did not want to be the direct services which already exists. We realised that the lack of a bridge connecting families to different resources,” points out Sudarsana. Reema quips, “A parent conversing with another parent who is going through a similar situation can be helpful. Quite often we are so engrossed with the individual battles that we are fighting day to day that comparing notes with another person who is going through the same journey would be very useful.”

Connecting parents

The group began working at the end of 2014 and formally registered as an organisation in October 2015; the website was also launched at the same time. Starting with a bunch of volunteers, they reached out and connected to parents through their parent empowerment workshops. “Parents are constantly looking for information — ‘how do I help my child with behaviour,’ ‘What is the right inclusion’ and a host of things. We have been partnering with experts in conducting these workshops,” says Prachi. She cites an example of a workshop on epilepsy and first aid. The workshop dealt with issues like how does one manage first-aid when the child has a seizure or what is the nutrition needed when the child has a low immune system, etc.

Reema stresses the focal point was to share how to get the child to be independent. “There are some things that we take for granted like brushing or taking a bath. It becomes a major task for a special child and how does one guide a child step by step and what kind of aids one can use,” she says.

Their goal is also to have content in regional languages. “Although there is a lot of western content available, it doesn’t have the Indian context. There is the family support here in India that we can probably leverage and bring the Indian context as well as values that Indians can understand,” says Reema. The team is creating a repository of data and content that can be categorised and put for other parents to share. “We also leverage the platform and the power of technology,” she smiles.

Pilot project

With Hyderabad as the pilot project, the team hopes to take this pan-India and also create a mobile app.

While Sudarsana calls it a huge learning experience to understand the issue of intellectual and developmental disability, Prachi is happy to see her dream come true. For Reema, it has been a journey of discovery.

“We are discovering there are so many good people, mothers who have left their jobs because of their child’s disability but are willing to use their professional knowledge and help us with content. I hope this platform aids their empowerment as well.”

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Printable version | Dec 7, 2019 6:15:30 PM | https://www.thehindu.com/society/nayi-disha-online-resource-platform-for-special-children/article17433105.ece

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