Nayi Disha: How One Woman Created a Community For 3,500 Caregivers of Children With Special Needs.

An old Maori proverb goes: “Turn your face to the sun and the shadows fall behind you.” The stories of caregivers of children with special needs exemplify this, showcasing unconditional love, faith, and belief. Every day brings a new challenge, but they see these children beyond their disability – for what they are – their children. And while they devote themselves completely to these children, not much is available for these caregivers in terms of information, research, or support, that’s where Nayi Disha comes in. Founded by Prachi Deo in Hyderabad in 2015, this platform provides essential information to families of children with intellectual and developmental disabilities, helps them find services, and also connects them with other families. These online and offline engagements help caregivers with information at different stages of the lives of their loved ones.

A technologist, Prachi could have chosen to walk the path tread by many, but she chose to set up an organisation, aptly named Nayi Disha—meaning new path—it helps caregivers support their children with intellectual and learning disabilities. Sudarsana Kundu and Reema Gupta co-founded the organization with her.

As the younger sister of a person with Down’s syndrome, Prachi intimately experienced the arduous journey of a family with a ‘special needs’ child. During her brother’s growing up years, there was very little awareness about intellectual disabilities such as Down’s syndrome, its prognosis and associated therapies.

Although, at home, her parents treated the two no differently, she could not reconcile herself to the fact that they had to study in separate schools. She was also acutely aware of the unsaid concerns of her parents about the future. From a very young age, she hoped to contribute to the field of intellectual and developmental delays. A few years back, she left her corporate career in technology and, hoping to contribute in this field, she volunteered at her brother’s special school. In the course of her interactions with parents having children with ‘special needs’, she was shocked to find that, even in this age of information technology, there was such a severe lack of awareness about special needs that it led to delay in diagnosis and intervention. She soon realized that working with one school was not enough. To make a significant difference, it was important to support the families who are the primary change-agents and develop an ecosystem that brings all the stakeholders together. Prachi, along with like-minded individuals, started the Nayi Disha Resource Centre. The aim of this non-profit organisation is to support parents in this arduous journey by providing information/ knowledge and by creating a supportive ecosystem. It is one of the few organizations in India that is leveraging technology (mobile app, online content and online parent communities) to expand outreach and improve access to critical information for parents of children with IDD. Over the last year and a half, ND has created a web-portal ( www.nayi-disha.org) that currently has an exhaustive list of service providers (doctors, therapists, schools etc.), conducted multiple parent empowerment workshops, developed parent education series in form of audios/videos and connected to more than 1000 parents in Hyderabad. Parents and caregivers not only find information but also add reviews based on their experiences, that further help others make appropriate choices for a better outcome. In partnership with a few reputed children’s hospitals, parents of newly diagnosed children are also informed of Nayi Disha website, where crucial information can be obtained without losing much time. The initial response and feedback of parents and families has been very encouraging.With Hyderabad as the pilot project, the team hopes to take this pan-India and also create a mobile app.The aim of Nayi Disha is to provide information, guidance, and support, both online and offline to families of children with special needs. It does so, in three different ways. All they have to do is log into the website, which provides the latest research and evidence-based information, in collaboration with subject-matter experts in the field. This is available through audio, video, infographics, etc. The website also provides a directory of available services in various cities with user reviews and ratings.

The journey of a family with a ‘special needs’ child is a unique, endless and tiring journey, with emotional turbulence. Parents go through a gamut of emotions like shock, denial, anger, sorrow and resignation before they finally come to the stage of acceptance. While some find their direction earlier than others, this journey is unexpected and unplanned for any parent. Nayi Disha is a small step in empowering parents to endure that journey. “… and then down the line, you find some hope like Nayi Disha, and say thank you”, remarks a grateful parent.

Comments

comments