Building a community network of parents with special needs kids – My Take by Prachi Deo, Founder, Nayi Disha Resource Centre

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Parents of children with special needs face many challenges when it comes to accessing the right information and facilities. A gap that Nayi Disha Resource Centre, an online information resource platform, is working to address, as founder Prachi Deo tells us on My Take this week.

As a technology and project management professional with over 13+years’ experience and as sister to someone with Down syndrome, I always wanted to work in the field of disability. However, I was looking for the right place to step in.

I had grown up watching my parents struggle to find the right kind of support and guidance for my brother. They would travel to Mumbai frequently to meet experts and it was not easy. That was 44 years ago. When I started volunteering at a centre that my brother goes to today, I was bothered to find how little things had changed.

How it began

I felt that volunteering was limited. Initially one of the ideas was to support special needs schools. This graduated to the idea of a resource centre for parents. That is because even today parents of children with special needs find it hard to get the right information, which is amazing given the access we have to technology. We found that while there are a lot of organizations working for children, there were barely a few organisations that focused on providing necessary information to parents.

This is especially true for children with learning and developmental disabilities. When it comes to accessibility for people with locomotor disabilities, it is easier to understand what the needs are. It means ramps, elevators, etc. However, when it comes to children with intellectual and developmental disabilities (IDD), it is not so apparent. This is how Nayi Disha Resource Centre came about. The idea was to do whatever we could to support parents of kids with IDD, be it access to information or facilities.

It’s been over two years since we started Nayi Disha.

Building an information resource

We have devised a technology-solution based on personal experiences as parents and siblings and from a deep understanding of the needs of families. The approach is holistic through our three pillars of services.

First is a strong parent support group. Our aim is to build a community of parents on a similar journey so they can share experiences, offer support and celebrate each other’s triumphs. We do this with online support groups and regularly conduct offline support group meets, where parents interact on various topics ranging from puberty and adolescence related issues, stress coping mechanisms etc.

Second, we have built a comprehensive and vetted directory for services that families need for their child. It is a comprehensive directory of all the services that parents need in a city, be it a sports coach or an occupational therapist. After a successful launch for Hyderabad, we are now expanding to Bengaluru, Dehradun, Indore, Pune, and Mumbai. The aim is to reach a wider audience across India.

The third is a knowledge repository with localized and relevant contextual information on developmental disorders, available therapies, etc. The idea is to go multilingual so we can reach out to more families and we have already started creating audios/videos in Hindi.

The Nayi Disha Resource Centre also conducts workshops on parent empowerment at various special schools in Hyderabad and Meet the Expert events to connect parents and experts from various streams.

In addition, we are also working on upgrading the website to make it mobile responsive and easily accessible through smart phones.

It is very satisfying to find more and more parents are getting involved in this initiative not just from Hyderabad but also other cities. Infact, doctors from reputed pedaitric hospitals are also referring parents of newly diagnosed children to join Nayi Disha support group and access our directory and knowledge hub services. There is lot more that needs to be done and we have truly only started with our journey.

To know more about Nayi Disha Click Here