When Prachi Deo, a software professional went to volunteer in the school once attended by her elder brother who has Down syndrome, she found parents of special children struggling with the same problem that had plagued her parents years ago – a lack of information. Ironically in this information age, hapless parents still depend upon word of mouth or on social media platforms where the veracity of information is not always established. Yet, accurate information about a speech therapist or trained yoga or music teacher could make a difference in the quality of life of these special children.
Leaving behind the bright lights of the corporate world Prachi relied upon her technological expertise to set up an online information resource platform for the families of individuals with IDD. The portal aimed at providing verified information, that too city wise, about schools, doctors, speech therapists, occupational therapists, special educators, physiotherapists and so on in an easily accessible manner for those with autism, Down syndrome, cerebral palsy, epilepsy or attention deficit hyperactivity disorders (ADHD).
“I realised that parents of children with IDD were still struggling for information as my parents had years ago. There is a dearth of qualified speech therapists and hence it is necessary to link parents with those available,” said Ms Deo. One year and several surveys later, Prachi founded Nayi Disha Resource Centre, an online information resource platform. Sudarshana Kundu, her neighbour and Reema Gupta, mother of a special child became co-founders.
Launched in October 2015, the directory now includes 800 service providers across six cities and has touched more than 2,500 families. Her project management skills came handy while conducting surveys by roping in volunteers and student interns for the directory.
“I found that while a number of organisations were working for people with IDD there was not enough focus on empowering families. Parents need support groups where there are other parents who are in the same boat, people who truly empathise – it means a lot to them,” she said. Nayi Disha now boasts eight support groups formed on the basis of the condition of the child, age and cities where parents can discuss problems like adolescence. After Hyderabad, Nayi Disha is ready to spread its wings to Bangalore, Pune, Mumbai and Indore and plans include a panIndia presence.
The website – www.nayidisha.org – also includes a comprehensive knowledge hub with more than 100 articles that carry easy-to-understand infographics, videos and audio to enlighten parents about the condition of their children and associated therapies. Regular workshops are conducted with experts and doctors and support group meets are facilitated for caregivers.
Speaking about major challenges faced by them, Ms Deo says people often fail to discern that challenges faced by parents of IDD children are different from those with locomotor disabilities. It is a lifelong journey for caregivers and although the aim is to make them as independent as possible with the right support.
Providing a simple device or accessibility by a building ramp would not be Often mistaken as a start-up, raising funds for Nayi Disha is obviously a huge challenge. But that has seldom deterred Good Samaritans as they march on their chosen path to help others.