By Kavitha Srinivasa
“India has at least 15 million people who are affected with IDD. This means that there are at least 30 million parents looking for information and resources to help their child,” added Prachi.
It is a constant struggle for families to find information that helps them fully understand their children’s complex learning and health needs and find suitable services providers. Lack of information and awareness is so severe that it leads to delays in diagnosis, assessment and eventually delays in suitable interventions for children. Parents run pillar to post to find the right services/support for their child and this experience can be simultaneously frustrating, alienating and extremely time-consuming.
“Most social service organizations work with individuals suffering from IDD, however, we could not find organisations focused on working with the families. We strongly believe that families are the torch-bearers and play a crucial role in the child’s progress. That is when we decided to play the role of a facilitator and empower families through a very challenging journey, IDD can affect any family,” said Prachi Deo, its founder. Nayi Disha Resource Centre (www.nayi-disha.org
) is positioned as an information resource for intellectual and developmental disabilities aims to support families of persons with Intellectual and Developmental Disabilities (PwIDD).
As the younger sister of a person with Down’s Syndrome, Prachi has witnessed the challenges that parents face in bringing up a child with special needs. 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 began volunteering at her brother’s special school. She soon realized that working with one school is not enough. To make a significant difference, it is important to support the families who are the primary change agents and also realized the deep need to have an ecosystem that brings everything together. The idea of a technology platform that brought key actors together gradually took shape over conversations that Prachi and her friend, Sudarshana, had during their evening walks. Sudarshana, who had no previous experience in the field of special needs, was drawn to this initiative because of her interest in the area of equality and inclusion. With Sudarshana’s encouragement, Prachi began to forge a vision for this initiative, cobbled up a band of volunteers and started a non-profit that focused on families of people with special needs. Nayi-Disha was officially registered in October 2015. The website was also launched around the same time.
Reema, a mother of a special child herself, initially joined Nayi Disha as a board member and has now decided to take on a more active role. Being a mother she is intimately familiar with the hardships parents face to find the right resources for their child and how lonely the journey can be. Her experience as a mother and as a pioneer in developing technology-based educational initiatives has led her to believe in the power of technology to further inclusion. Reema was the founder of Anokhi Aasha, an NGO that worked on inclusion of special needs children in mainstream schools and the challenges thereof.
The three women now form the core team of Nayi Disha and bring complementary skills—from project management, technology, content development, policy development.
Inform, Connect and Empower are the underlying tenets of Nayi Disha.The NPO has taken a holistic approach through the three pillars of services: (i) build a strong community of families (ii) build a comprehensive and vetted directory for services that families need for their child (iii) develop an information hub with localized and relevant contextual knowledge, such as information on disorders, available therapies, etc. Nayi Disha is making these services available as a one-stop shop with both online and offline components.
They are making these services available as a one-stop solution with both online and offline components.
Nayi Disha team believe that community building is most crucial to bring about a systemic change and they host online as well as offline parent communities. This helps parents to not only trade tips and indigenous knowledge but also to share their triumphs and disappointments and provide each other with much-needed support. Offline support group events are also conducted which bring families together to bond and build strong friendships.
The second service is to build a supportive digital ecosystem of service providers in Hyderabad. They include special schools, sports coaches and music schools, along with neurologists and developmental pediatricians. Parents can already rate and review providers on the current website and Mobile App will help us give families curated information about providers in the vicinity leveraging mobile features such as GPS and integration with calendar etc
The third component is a Knowledge Hub, an e-learning module which will share content and education videos in vernaculars. The Knowledge Hub is visualized to be interactive and engaging.
What started as “an idea without a name” has now grown and become a robust and useful platform for over 1000 parents and service providers such as doctors, special educators, therapists and schools. In the past one year, we have been able to connect parents to a wide range of service providers and fellow parents through Nayi Disha website, online families group, our Facebook page. Nayi Disha has empowered parents with information and knowledge through Meet the Expert events and Parent Empowerment workshops. Reputed children’s hospitals in Hyderabad are referring newly diagnosed families to our website. Nayi Disha has partnered with special schools to regularly organize parent empowerment workshops on various themes from behavior management to nutrition. Many of these workshops have been successful. Nayi Disha has partnered with JP Morgan Chase’s Force for Good programme to develop a mobile app that will complement the website. “We are excited about the mobile-app as many parents provide round the clock care to their children and mobile app can come in very handy for parents and boost their interaction with the platform,” Prachi reasoned.
Of course, this has been possible because technology is enabling Nayi Disha fulfil its mission and increase the impact as well. Technology gives a platform to increase reach, foster collaboration and increase the velocity of impact that Nayi Disha envisions to achieve.
It also brings the knowledge created closer to the parents and all other stakeholders through web and mobile
Expansion of the service provider directory is planned for Bangalore and Dehradun this year and we hope to cover at least 15 cities in coming years.
Nayi Disha team hopes to connect with 30,000 parents through the new mobile app and their knowledge hub. “Our goal is to empower the millions of families in India, whose children, young or adult, have intellectual or developmental disability and give them access to information resources usually only available to a privileged few. Together, we dream of a beautiful world where there is enough awareness and understanding about intellectual disability and persons with the same are embraced with open arms by their families, friends, schools and society at large,” Prachi concluded.