Daan Utsav: Supporting Families Tackling Disabilities
This #DaanUtsav, BloombergQuint brings you a series of NGO startup stories, on how organisations across India are bringing about significant transformation, and are looking to scale-up. These startups are participating in ‘Dolphin Tank’, a ‘Shark Tank’ format event with pitches made to #LivingMyPromise’s ‘dolphin’ signatories, for their support.
The bond that I share with my brother is not different from any other sibling bond. The fact that he bears an extra chromosome only adds that extra love and makes it even stronger. The defining moment in my life which brought me to this sector happened in 2006 when I had my daughter. One day while playing with her, I realised that caring for this little vulnerable bundle of joy would eventually get easier as she would grow older and get more independent. On the contrary, it would only get tougher for my parents, who have been caring for my brother for more than three decades, and so have millions of other parents who have children with disabilities. In hindsight, I realise that right then, the seed of supporting families had been planted in my mind.
More recently, in 2013, I was appalled to find that in this age of technology and advancement, parents are still struggling to find timely support and information to provide better care for their children with disabilities. I saw a mother travel more than 35 kilometeres to a school in an auto-rickshaw, sit outside the school for her daughter’s therapy, not knowing what was happening inside. While there has been significant advancement with therapeutic interventions, there is little traction to supporting the caregivers. And this experience led to the genesis of Nayi Disha.
A Long-Term Partner For Families
Nayi Disha was formed in 2015 with the intent to equip families affected by developmental disabilities and empower them to be the change agents in the lives of their children. Nayi Disha works as a life-long partner to families by providing them information, guidance, and hope through a reliable and evolving digital hub and supportive peer community. This hub is a rich source of knowledge and information vetted by experts. We are committed to making the latest research and evidence-based practice available to families as they try to do the best for their kids.
Nayi Disha also hosts a directory of available services in various cities, with the option for user reviews and ratings. This is an essential feature in a landscape with almost zero oversight or standards.
Our experience over the last six years tells us that our peer community is the most important support for our families. With the active participation of our community champions, families can engage with other families in similar challenges and become part of peer support groups and communities. These are non-judgmental groups and provide safe spaces for families to share their joys, challenges, triumphs, and trials and provide a tremendous sense of belonging. The practical solutions that families share with each other are invaluable and hugely beneficial for every caregiver. This also leads to the emergence of more community champions who facilitate building more of these communities creating further ripples.
Disability affects not just a child but entire families, which face discrimination and stigma that stems from a lack of awareness in our society.
Guarding Against Fake Cures
As families confront the diagnosis and struggle with acceptance, they go haywire in search and hope of a cure. With such a dearth of reliable information regarding practitioners, therapies, and other services, parents come across many unscrupulous people who are there to take advantage of their situation.
We come across families selling their homes to pay for expensive fake therapies that claim ‘cures’ that do not exist. We are constantly guiding families against fake claims of stem cell therapy as a potential cure for Autism, Down syndrome. The constant worry of “What after me?” gives every parent far too many sleepless nights. While these are complex problems with no easy answers, it is our constant endeavor to encourage parents to plan for the future by appointing a guardian and making financial arrangements.
Staying Connected With Families
Another largely ignored aspect is the emotional well-being and mental health of the parents/family members as primary caregivers.
Closure of schools, therapy centers put additional stress, especially on mothers during the Covid-19 pandemic. We launched a free phone and WhatsApp-based helpline for families to seek counsel and chat with experts during these difficult times.
In this short span, Nayi Disha has become a credible source for support, and it gives me enormous satisfaction that families regard Nayi Disha as their very own. To date, we have reached more than 2 lakh people through our platform. Our Helpline 844-844-8996 is accessible to parents via phone and WhatsApp. We have received many prestigious awards in recognition of our work including the international Zero Project Award at the United Nations office in Vienna. Our team is super excited about the launch of our upgraded multi-lingual mobile-first platform this October which will bring us a step closer to providing support to families in smaller towns of Hindi-speaking states in India.
Typical discourse on disability is about providing therapeutic interventions or livelihoods training for people with disabilities. Technological innovations increasingly focus on providing assistive technology and devices. While all of this is important, it is equally or rather more crucial to involve families in any initiative that is directed towards supporting people with developmental disabilities to make it effective. We at Nayi Disha are committed to change this discourse by raising awareness not just about developmental disabilities but also recognizing the invisible caregivers and providing them with the support they deserve!
Prachi Deo is Founder and Executive Director at Nayi Disha.
The views expressed here are those of the author, and do not necessarily represent the views of BloombergQuint or its editorial team.