“My name is Prachi Deo and I moved to Hyderabad in 2011. By training, I am an Engineer and I worked in the IT space for about 13 years. But I am also a sibling to an elder brother who was diagnosed with Down syndrome. So it is the journey that I have seen with my brother and with whatever challenges my parents faced, that inspired me to start Nayi Disha Resource Centre which is a support group to help handle kids with Autism, Down syndrome, epilepsy, deficit hyperactivity disorders (ADHD), cerebral palsy, epilepsy.
Our vision is to empower and equip families of people with intellectual and developmental disabilities with information and knowledge to support their children.
More recently, around 2013, when I was volunteering at one of the places that he used to go to, I was quite surprised that even at this age of technology and advancement, the parents are still struggling to find support and information for the children of special needs. I saw mothers travelling for more than 35 km to a school, coming in an auto, sitting outside for therapy and special education whereas they did not know that there were schools around the places where they were coming from. Considering my brother’s condition, I was willing to accept that there was no access to such information forty-five years ago. But what surprised me was how little things had changed since then. So it is with this perspective that we started the Nayi Disha Resource Centre in 2015 and our role will be that of a facilitator helping parents wherever they need support. We are completely dedicated to providing support to parents or family members as primary caregivers.
At a time when there is difficulty accepting the situation, parents go haywire in search of a cure. In this search for a cure, parents come across many unscrupulous people who are there to take the advantage of a situation. Recently we got to know about a case in Hyderabad where parents were paying Rs. 5000 per session which is just unacceptable and they promised that the child will be cured in one year which is not true. There is no cure for Autism spectrum and Down Syndrome. One can only make progress.
We also came across another case where the parents were asked to get stem cell therapy done for the cure of Down syndrome. None of these therapies work. So it is an extremely difficult part initially where parents need the right information on this and at the same time, they need support from other people to help them accept the situation. And the best way to make this happen is to let parents know that there is a community out there to support them. So taking these challenges into account, we have created a three-pronged approach.
The first part is we have created a National Directory of Services where parents can find any service that they are looking for. It could be a special school, it can be a residential centre, it can be a therapy centre with therapists or it could be a music teacher who’s willing to teach the child with special needs or a dentist who is empathetic towards special needs children and willing to consult for special needs children. Also, there is an ability to rate and review providers so that the parents can know what the feedback is from other parents.
The second part is we have created a Knowledge Hub which has articles that parents would be looking for across life stages. So our articles would be starting with how do you identify a red flag, go for assessment, how do you go on therapies, how do you work through puberty challenges, how do you plan for your child’s future because the biggest question mark for the parents is what happens to my child after me. Well, there are no easy answers here. But the least parents can do is plan. It might be in terms of planning financially, second is planning who will be the guardian for my child in the future and so on. We make the information available through posters, videos, infographics, articles and so on for free of cost. The knowledge hub consolidates this information on one platform, making it easy for parents to access and the information is available in English, Hindi and Telugu.
And the third part is the Parent Community. We have a parents support group where parents can interact with each other and find support. And all these services will get encapsulated through our helpline numbers.
To date, we have reached more than 2,00,000 people through our platform. Our Helpline 844-844-8996 is accessible to parents via phone and WhatsApp for guidance and counselling for free.I think one of the important aspects that everyone needs to realise is there isn’t enough awareness about these conditions of Down syndrome and Autism in India. But it’s also important for everyone to understand that we all have some form of disability in ourselves. If not today, maybe in the future.
Old age itself brings in its set of disabilities. We all have our strengths and weaknesses, so it’s quite essential that we create space for people with different abilities to exist and live together in society because there’s a lot that we get to learn from each other.”