Interview With Neena Wagh On Assisted Living Scenario in India

Dear Readers,
This interview is close to my heart as it explores a topic that is the need of the hour, but unfortunately, is not properly addressed. One universal concern of every special needs parent is what will happen to their child after them? Who will look after them? While some individuals with special needs can manage on their own, some with little assistance, majority of them may need full time assistance in their adult lives. How are we handling this situation? While some parents are happy with finding a good assisted living place for their child, many are not willing to address the gravity of the situation. No matter how much we want to, we cannot be there for our children through their lifetime! We have to look for solutions to this problem. 
Allow me to introduce you to Neena Wagh, an Autism parent, who has tackled this worrying problem head-on. Not only has she started a group home for her son and other kids, she is an active advocate of finding lasting solutions to the problem of assisted living scenario in India. She has started a Facebook group - Forum for Assisted living solutions and is proactive in exploring the various centers that have opened up. She visits the places and shares her views and photos of the place, a very noble initiate indeed!
Let's get started with her interview without further delay.

Would you like to share a few details about your Autism journey so far?

My journey with Autism started the day my son was handed over the label and told that he would require life long support. I did not take much time to mull over "why me" as I feel when you think like that, it means that you are wishing it for someone else. So I just moved on and started filling in my arsenal to prepare myself for this long battle. I must say that my husband and my family has been a  great support, in that sense I am truly blessed.

Would you like to share a few details about your son?
His name is Ammogh. He is now 17, with not much of verbal communication, but uses whatever he knows very effectively! What can I say, where do I begin from, he had me from the day he opened his eyes and looked right through my soul!! I think rather then teaching him, its been the other way around, he taught me to believe in him, to not speak about his "dis" abilities but to talk about what all he can "do". I won't say things have been all hunky dory. He too went through his phase of aggression, but now he is much calmer and his learning curve has improved manifold. At present he is enrolled in multimedia course along with his regular education.
When  did you start exploring assisted living?
I started exploring this question - "what after us" very early in my life, as I saw parents of much older children still struggling with their basic needs, found that they were still sleeping with them sharing the same bed. I observed that in the process many parents were either becoming more autistic themselves or becoming too over protective, which was not helping any party.
I saw your video of Arunima, long back. A few details of your experience there...
In search for a model, I went with a friend of mine there, in  Dehradun . At that time Arunima was only being run for girls. So I seeded the idea in Aparna and urged her to start the models for boys as well. After few months Aparna got back and said that yes she is willing to take him. So Ammogh was the first boy there. Yes a lots of learning happened, the transition from a protected environment to an independent environment went surprisingly very smooth.
Wow! Tell us more about your place
Few of us parents had reached a point where we had started looking for a more focused setup where each of our children was given more care and attention, a place where their growth would not be hampered for want of better facility or  professionals. During that exploration a friend of my husband  offered us a place in Delhi, very close to my house and we simply took that as a sign of God. We are four parents, we share the expenses equally, Though as and when we feel someone of us can do more, we come forward and just do it and it can be anything, sponsoring a lunch or an outing, going for a movie or a trip, piece of furniture etc. My vision was to set it up like a joint family setup, with lots of uncles and Aunts to dote around our children and we have!

That sounds lovely! A glimpse into a day of your kiddo in group home..
Our kids generally wake up by 7-8 and are given warm water either with amla juice or simply plain, then after the toilet they do morning Yoga and some light exercises, followed by bath and then breakfast. After that their studies and different learning activities begin, in which daily reading the newspaper is also included. We have enrolled them for multimedia classes so thrice a week they go there and thrice a week they have RPM classes. And rest of the time they complete their homework. Five days a week they have their sports activities for which they go to a local district park which has open gym facilities which they use to the fullest. On weekends they are more focused on ADL and self grooming and housekeeping activities. They are involved with all that is required to live in a home setup. So basically they are learning in a home setup but everything is structured. The staff lives with them as companions, friends, philosophers and guides.


Your views on the assisted living scenario in India...

At present the assisted living scenario is almost negligible, with heart wrenching pathetic conditions of the state run setups like Asha Kiran and many such hell holes. As far as private setups are concerned they are more based on charitable models attracting only certain strata of people. I would say this entire "sector" is just waking up and is in a very nascent stage. A lot needs to be done, for the handful setups that we have will not be enough to cater to the huge demands that will come in the very near future. I say that because there are still 80% of the parents have not woken to this big question. And those who have started looking for the answers are suddenly realizing that the kind of lifestyle that they would like for their children also to have in such setups are in lurch for lack of many alternates. The few models which are there will have the tendency to either monopolize or will lack the bandwidth to deal with the burgeoning demands.Also there are no agency to check the malpractices of such models. We will also have to engage the builders, state as well centre Governments and all the other stakeholders also to come forward with alternates. 
Your opinion on how we can improve this scenario for better
The only way to improve the scenario will be by bringing more of assisted living models in different parts of the country. No one can/should claim that their model is the best for one model fits all will not work, for we have a very diverse society and we will have to cater to many sensibilities and pockets. I can already see that a slow movement has began. As a matter of fact I am personally working closely with two three different sets of parent groups/individuals who are willing to come up with their own models. With a special focus on this aspect, I created a forum on Facebook called Forum for Assisted Living Solutions where I am collating all the information, latest news and happening in the field of assisted living solutions and raising awareness through it for the need to address the two major question 
1) Where these people with special need will live when their parents are not there?  and
2) What will they do to lead a meaning full life?
Aptly said Neena.
Your advice to other autism parents..
Every parent tries to his/her best for their children. I have a very tough message to give to the parents of children with Autism: No time to feel sorry, there is no one to give you ready-made solutions. WE will have to raise the questions and we only will have to search for the best possible answers. Do not despair, reach out to a fellow parent become his/her support and for sure someone will come along and will become your support and very soon you will find your journey not that lonely and tough. Extend support , share resources, support those who are doing something to create assisted living solutions.Lets all get together and create a better world so that we will die in peace knowing well that we went all out and did our bit to make life a tad easier for our children.
                 With the ever increasing number of children with Autism and other special needs and with not much help from government, parents have to become more proactive. That is the need of the hour! Be the change you want to see!
Thank you
Padma Jyothi
Posted in Interviews on May 07 at 07:17 AM

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