Prachi Deo is the executive director of Nayi Disha. Nayidisha, an information resource, for intellectual and developmental disabilities, has helped parents on not one but many critical areas. These include counselling, resources directory, and need based support. From humble beginnings, spanning 17 years, Nayidisha and its team, have scaled new heights.
In conversation with Prachi Deo.
1) A little about yourself. How did you envision
NayiDisha so many years ago and how did it grow?
My elder brother has
down syndrome, and I have seen my parents’ struggle. I grew up watching
them. I started volunteering at a centre. And then realised volunteering
has its limitations, and I wanted to reach out to more people. With my
background in technology, I started a resource centre, and we have grown
organically over the last 7 years. Soon I had volunteers helping me out. With
funding, I now have a capable team who look into the different services provided
by Nayi Disha.
Nayi
Disha’s purpose is to connect parents with other parents and also with
providers. We provide information right from diagnosis, to providing support in
getting the UDID card and trust formation on our platform at https://nayi-disha.org/.
There is a helpline where one can connect with us over WA, or over phone. –
844-844-8996 People even from remote areas are comfortable with WA and this is
one of our more popular features. The directory of services is constantly being updated. We have have Information available in Hindi as well. We can access simply the Hindi version of the platform by clicking the globe icon
on top or by clicking here - https://nayi-disha.org/
2) How do you update the information in your
resources section? Is there any feedback loop?
Initially,
when we started Nayi Disha, we had a blueprint of the services we wanted to
offer. We had also broadly demarcated the services we offer based on the stages
of life of a person with disabilty. As we kept talking to the parents, we
slowly added more sections, intending to help out more people.
We
take the support of our local parents’ communities through whose help we are
able to authenticate the services provided in that area. We have a whole panel
of subject experts like neurologists, developmental paediatricians. For
instance, we have videos done on topics like epilepsy with subject
expert i.e. neurologist. Parents can access all of this from our platform .
3) What is it
that people are looking for on the website?
It varies. Parents who are in
the process of getting a diagnosis, parents looking for resources. We have
parents looking for vocational centres. All of them come to our website with
different needs. Sometimes parents feel low and visit the site for
inspirational stories to motivate themselves.
4) What help can
your website offer for people with disabilities looking for employment?
We
have listed down organisations who work in employment, vocational centres that
can help train the adult.
5) Can you tell me a little about your outreach
program?
Since
we have a vast repository of information built over a long period, and
a free helpline, we have been particularly interested in reaching families in
remote areas, especially the Hindi-speaking belt. In case they are not able to
access the website, then we try to help them out through our helpline as much
as possible.
We have a
WA based training program that helps parents get future ready. Those who
subscribe to this program for 30 days get access to bytes of information that
will help them with planning the future of their child. Things like getting
paperwork done, for disability certificate, UDID card, appointing a guardian,
etc. We are getting financial advisors, lawyers enlisted as
well who can help with financial planning for the future.
6) How crucial is planning, especially for a child with a disability?
“What after me” is the elephant in the
room for any parent and gives them sleepless nights. While the challenge is
inherently complex, it is important that we prepare for the future with
incremental steps progress at every stage.
Parents need to start identify the
child’s interest and work from there in their journey of making him or her as
independent as possible.. Right information should be available to them at any
point of time to enable them make informed decisions. Be it early intervention,
networking with other parents, understanding the child’s interest and grooming
the child accordingly. It is equally important to put a plan
in place of who would care for the person, how would the expenses for caring be
supported. There are no simple answers and every family as to find a solution
which works for them as a unit.
7) As in looking at the big picture, fundraising presents
a big problem, as the disability population is in a minority. How can this be
changed?
Given
many other challenges we face as a developing country, Disability and related
challenges do not receive enough attention it needs. To start off
with, we need a better database to work on. Whatever little focus
disability receives is for skilling, employment and some for early screening. Apart
from this funding for better education of children with disabilities, funding
for caregiver empowerment is equally important and so are policies that bring
equity and equal opportunities to bring about genuine change. Accurate statistics
prevalence of disabilities regarding the number of people and their immediate
families affected can hopefully bring a realisation that it's not “their”
problem and can affect anyone and hopefully receive the attention it
needs.
8) “Normalising disability”? What do we understand from that
phrase?
Disability is all around
us but society at large remains unaware because of lack of exposure. The lack
of awareness and stigma causes further segregation and hence marginalisation.
We need more conversations around disability, more exposure, dissemination and
mainstreaming of disability. If young children are exposed to disability early
on, they will accept differences as a part and parcel of the social fabric The
Indigo incident could have been averted, if the employee has been exposed to
disability early on, perhaps he would have been more receptive to the idea of a
child with disability being on the flight. It would not have been an anomaly to
him.
9) Can you give us an insight into financial planning and its
importance?
Caring for a child/adult with disability involves multiple
interventions, health screenings, and other costs. This invariably increases the
financial burden on the family. Whether
family is affluent or has limited resources, they still need to plan to provide
the care they can best afford. Families can look at different ways to plan for the future of the child.
10) Where can you download the app?
We provide a mobile-first platform which can be accessed from your
chrome or any other browser. You can google and find nayi disha platform. Again
the URL is https://www.nayi-disha.org and our
Helpline no is 844-844-8996.
Thank you Prachi Deo for this interview, touching on various aspects of concern and taking us through the various services rendered by Nayi Disha to our community.
#informationresource #disability #statistics #empowerment #counselling #resourcedirectory #UDID
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