Aparna Das on ‘Arunima’ – Assisted Living Centre

In this film, Aparna Das, Founder of ‘Arunima’ – a safe and supportive space for individuals with autism and other developmental disabilities – shares the journey behind its creation. She delves into the diverse age groups of its residents, the unique living arrangements and the supportive environment that sets Arnima apart. Additionally, she offers valuable insights and advice for parents navigating similar paths

We started Arunima in 2011.
So, we’re going to be 14 years old, we’re going to be 14 years old next year.
And uh started because of my own family situation, I have a sister who has autism
and I wanted her to be in a place that was very much like home.
I did not want to institutionalize her.
And of course, I was worried about what was going to happen when I was no longer around.
So, um Arunima right from the beginning started with the philosophy of
being like a home that people could live in uh if they needed support
but their parents were not or their family members were not going to be around anymore.
So that was the whole idea behind Arunima.
Things have changed a lot in terms of you know just new ideas evolving, purposes, new purposes coming into play.
But I think the basic idea of not turning this into an institution for people with disabilities where inmates live, I think that that we’ve held to and that’s something that runs through Arunima like a thread, like a red thread basically, like something that we have to remember all the time.
There are 21 residents at Arunima, in our current setup
and the way that our home is set up is, it’s it’s set up like a home.
So, there’s, it’s an apartment building with two-bedroom and three-bedroom apartments.
Uh currently the way that it is, people either share a bedroom,
two people share a b edroom or you have your own bedroom with an attached bathroom.
So it’s very much like a home that has a little kitchenet, it has a drawing dining room, like a typical home would be.
People go home, sometimes for celebrations, for weddings in the family, for festivals, if they feel like, if they’re comfortable with doing that and there’s, there’s no hard and fast rule about, you know, how often people can visit, whatever suits the individual best.
Uh but we are also building our new center based on the same kind of model of apartments
and these are going to be bigger apartments that will accommodate four people within every apartment.
Each person will have their own bedroom and balconies and attached bathrooms and common living spaces.
So the and why, why only 32 you know.
Right now we have 21 people, later we’re going to have only 32 people.
Because then it’ll stop being like a home if we are working with 50, 100 service users you know, then people will become service users.
We only take people in after they turn 18 and there is a very uh critical reason for that.
Children need to be with their families.
You know the whole idea of psychological development and attachment.
You cannot take people away when they’re 3 or 4 years old.
I actually get calls from people saying I have a 4-year-old or 5-year-old child with autism and we want to put them into a hostel.
And so I explain to them, I understand, as a family member I understand the challenges as well.
But I also explain to them that children need to be with families and of course those families need support.
But we are not for children, we only have adults over here.
Our age group currently is about 22 to, our youngest person is 22 and the oldest person is about 53 years old.
And we also are aware of the fact that people are going to age as they are here.
Uh is this a place that people stay lifelong? Yes, that is an option.
But there’s no hard and fast rule that people have to stay forever.
If families feel like, and we’ve had situations where people have felt that you know,
uh after a couple of years of being here,
families have felt that everything is much so much more manageable and so much easier
and they have called their child back to be with them and their child is living with the family.
But the fact of the matter is, and I speak as a family member of a person with disability,
the fact of the matter is that there is no real support beyond us, right.
And who can I trust, for my sister, if I just take her example,
I don’t know what is going to happen to her if I’m not there to keep an eye on things.
So, I’ve been able to create an environment that I’m happy.
You know I get videos of her singing, dancing, laughing with other people
and this is something that she used to only do with me at some point of time.
You know when she’s sad that are other people who can comfort her.
It no longer is only me who can make her happy again.
Um when she expresses something that she’s going through she doesn’t wait for me.
There was a time where she would just wait for me to come and she would only tell me.
There are at least five people that she has that attachment with today, which is amazing.
Arunima used to be a project for persons with autism and it’s still called Arunima – A Project for Persons with Autism.
But we actually have people with other disabilities here as well.
So there are people with Down syndrome, there are people with intellectual disability,
uh there are people with cerebral palsy who are also enrolled in our future project.
Um and all everybody lives together, everybody lives like family.
There are friends, so even within an apartment.
And there’s no segregation that only people with Down syndrome will live together,
everybody lives along with each other and really the disability doesn’t come into play at all, in in the homes that we’re living in.
Um every single person at Arunima goes to work
and people people do what they like to do, that’s very very important to us.
So it’s not like we have a curriculum at Arunima that people have to fit into or people have to follow.
When people liked embroidery, we dec-decided okay what do we do with embroidery.
When people liked computers, we said, okay let’s develop that.
When people liked to cook, we developed that as well.
And in fact what is very exciting is that you know there were some people who liked cooking so much
and we’d done enough training for them and you know we said, how long will we continue to train?
So we decided to open a tiffin service and so now we have a tiffin service that people go to to work.
And the exciting thing is that one person from the tiffin service has now been employed in a cafe, outside as well.
So he’s, he’s learned skills.
This is my job, really.
And do my, this thing, menu, write the board, and then, then I cut all the things.
I made a curry, my, vegetable, so, there’s my real job here and my office too.
And apart from the tiffin service, we also have an office where people do different things.
So either they’re working with our admin department,
or they’re working in our handicraft department,
or they are cooking or they are uh learning accounting skills,
or they’re learning Excel, you know, different things.
Somebody who was learning these computer skills over here is also just been taken into another office.
And he started, he’s doing some training and internship over there.
Uh somebody else who was working in the tiffin service is now doing in uh an internship at Antara which is a senior living center over here.
So that’s that’s the other thing you know over the years,
like I said earlier that you know we’ve learned a lot of things along the way,
things that we hadn’t thought of earlier.
And we’ve realized that as long as we continue to have a sheltered workshop as such,
people aren’t going to get out of them.
And if we think that we are preparing people for the real world outside through our sheltered workshop we’re actually very sadly mistaken.
Because there’s a huge gap between what we do and what they do.
Because the experts at work, are the experts, we are not the experts.
So we don’t really know what the demand is going to be.
So for example when this uh lady went to Antara for her internship
and I said you know she can do hospitality related work
and the person in charge said “there comes a time when things get really messy here and she’s not going to be able to cope with that”
because at that time you know when people are shouting at you, emotions don’t come into play.
Now where are we going to replicate that over here.
So I think it’s really important for people to have as many real life experiences as possible and get out into the community as at work.
And recently we’ve had about 4 people getting out and working
and we’re hoping for that for other people as well.
It doesn’t necessarily have to be a full day thing but let’s not wait for the perfect opportunity.
Let’s just look at every opportunity that we can get.
How is the money earned by the residents managed?
It’s their money and they have bank accounts, all of them have bank accounts.
They have ATM cards, they use their ATM cards to pay for things.
So we have certain things that fall within Arunima’s budget and we go out and we do certain things.
But there are things that we you know, why should people be restricted to only what Arunima can afford.
So if they can afford to do something, if they have collective money to um go bowling, for example.
There’s a gentleman who loves bowling and because of him the other people in his apartment have also started getting into bowling.
They pay for it themselves.
Um there was recently, in a cafe, in a regular cafe there’s there was an event,
it was an anime movie uh Ramayan in Japanese an Indo-Japanese collaboration,
and he loves anime and so he went and he said, okay show me the menu, and he had his coffee.
Now it was not a scheduled thing or anything like that,
and that is the other thing that we’ve learned you know.
We don’t schedule people’s lives anymore.
People do what they want to do, sometimes they made make bad choices as well.
But we’ve all made bad choices and we learn through those bad choices.
We keep talking about those things you know.
How is this the best thing to do, why is this not the best thing to do.
Lots of things, regular conversations.
What do you think are the key differences between life inside and outside ‘Arunima’?
One example of the huge difference in learning when you’re outside in a typical workplace and when you’re in a sheltered workshop.
We are very careful about what people want, what sensory overload they may be having,
what uh they like and they don’t like, what kind of breaks people want.
Nothing of the sort happens outside, actually.
And um there is this one gentleman who’s, has autism and he’s very fixed in his ways.
So he started working in this company and then he called me one day and said,
“today I don’t feel like going there, I-I’m missing all my friends at Arunima.”
So I said “well okay, no problem,”
I felt a bit awkward because you don’t do that kind of thing but I said yes.
Then his mum messaged me separately and she says,
‘no, actually it’s Dhanteras today and everyone’s been told to come wearing kurta pajama and he doesn’t want to wear a kurta pajama.’
Because in his head at work you have to wear a trousers and shirt.
So then I messaged him I said, ‘are you nervous about this?’ and he said ‘yes.’
So I said ‘you just wear what you’re comfortable with.’
And I wrote to the people and I said, ‘you can’t suddenly tell him that he has to come in a kurta pajama tomorrow.’
Luckily they understood they said, ‘it’s not a problem.’
She messaged me a couple of days later on Diwali and she said, ‘look he’s come in his kurta pajama.’
You know I think it was a combination of I was respected and but I saw everyone else around me was wearing that kurta pajama.
You know the thought of doing it was much more daunting than actually doing it.
And later he did that and now he’s absolutely comfortable doing it you know.
So these are things that we probably wouldn’t have been able to achieve over here.
What is the philosophy behind the establishment of ‘Arunima’?
Initially India was not ready for this idea because all we knew were institutions, right.
And when I started talking about this people said no, this is a very romantic idea,
this only happens in the west, people will not accept this in India.
But today you know we started with a pilot project for five women,
and today we have 21 residents and we have a waiting list of people.
Uh so obviously the idea works and there must be something that families see that they want.
Ever since we started Arunima though you know many many more centers have come up
and every center is its own model.
And when you talk to people you know I get to interact with a lot of other people who are running centers, one size doesn’t fit all.
Um also you know some parents are okay with certain things that other parents are not okay with.
Uh obv- you know eventually we’re gonna focus on our own work and we’re not sitting here to judge other people.
But I think it’s very important that we don’t lose sight of the dignity of the individual that we’re working with, that is very important.
So hopefully there’ll be many conversations as this goes on.
But if I were to say what you know what is the philosophy that keeps us going all the time.
It’s about remembering firstly what the purpose of this organization was.
It was never to hide people away. It was never to segregate them.
And it’s very easy for people to get segregated in a setting like this no matter how wonderful it is from the inside.
We have to be very proactive about making sure that we’re part of the community.
And there many things that we have to do intentionally every day and we can’t stop thinking about them.
Um because every time we try something new there are 10 barriers that come up.
And so we have to keep planning, keep planning you know, how do we overcome these barriers.
Um barriers like um pe- go you go to a new place and the staff come back saying you know, it felt horrible because people were just staring at us.
And saying that yeah people are going to stare when they see something that they’ve never seen before.
And disability is not visible in India.
You do not see people with disabilities outside in your regular community like you would in other countries.
But uh this is the way that we’re going to become visible,
but we’re also we need to become visible doing typical things.
We don’t want to be doing special things outside, you know.
And so we make a conscious effort, for example that if people are going out, how do typical people go out?
Do they go out in groups of 20 or they gro- go out in groups of 2 or 3 people, you know, so we’re very conscious of that.
This is not what we used to do earlier, we’ve learned this along the way.
You know it’s not like we woke up one morning and we knew everything that had to be done.
But these are things that we’re becoming consciously aware of.
Um you know how how many organized activities do adults do on a weekend.
No, no one organizes my day off you know.
I do what I want to do, so that is the other thing.
Uh I was recently talking to a parent who said “oh but if you give my son so many choices, he’ll just say yes to everything.”
And I said “yeah that’s how we learn how to make choices.”
We had this uh, the there’s a lovely animal shelter close by.
And uh one of the things that we suggested was hey would anyone like to visit this dog shelter.
And the person who said they wanted to visit the dog shelter is petrified of dogs.
And so we said let him go.
He went for the first time and then he never went back again.
You know and that’s how we discover how we going to do things.
So it’s not like, he will go there, he will go here, we will decide who will do what, who will go where.
Um also you know even in decisions that are made about what’s going to be made for food,
um who will go out with me on my birthday.
Just small things that we do.
We have to keep thinking about this.
We try our best for the residents to make these decisions for themselves.
And people who were not choosing earlier are choosing as a result of that.
And hopefully you know, I know that 10 years down the line, we look back and say,
oh my gosh how could we say these things or how could we do these things, but we’ll keep learning.
What makes life worth living for each one of us right.
When we know that, you know, we wake up in the morning knowing that we can look forward to the good things of life.
Now very often that is not something that is available to people with disabilities or people who are marginalized in any way.
People who are devalued by society, by the community.
And this is something that we became very very conscious of.
At Arunima, a residential center, people were being brought by very loving parents but not by their own free will, right?
And they know also that they have come here because they will always need to be protected,
that they will always need to have someone who’s looking after them.
Uh that they will be dependent on the rules and regulations of whatever the place is.
And that is extremely devaluing.
Each one of us needs to have some sort of valued role in life, you know.
If I think about my own roles, I’m not just the director of Arunima.
I’m a mother, I’m a sister, I am a neighbor, I am an acquaintance, I am so many, so many things.
I’m a gardener, I’m a do- pet lover, I’m a dog walker, uh I’m a cook, I’m a book lover, you know.
I have so many roles.
But what are the roles that people with disabilities have, they have no roles.
And therefore, no value in their own eyes or in the eyes of the community.
“Oh poor them,” “oh they are a burden on you” whatever, that’s those are the roles that they are cast into.
So this is something that we think very consciously about as well.
And we and roles have to develop and evolve naturally.
They have to come from who the person is.
How can residential services be monitored effectively to prevent mistreatment?
There is absolutely no monitoring from the government, we can do what we want.
Now in Uttarakhand uh we have to be registered with the Ministry of Social Justice and Empowerment as an organization working with people with disabilities.
However, I was in a meeting recently where we were talking about this and it’s state, state specific.
It’s required in some places, it’s not required in some places.
We’ve registered, we have a certificate.
But no one has ever come to Arunima to find out what we are doing, you know.
We could be doing anything over here, so it has to be up to us at this point of time.
We still feel it’s really important for the government to get involved.
But it may not be on its list of priorities at this point of time because there are so many other issues.
So but then we’ve got to start it ourselves.
So at our organizational level we have very strict and clear policies
that also keep getting revised as we come across new things that
you know, the new horrible ways in which people can be mistreated.
So we have policies, it the training of our staff when they join is extremely extremely important,
that they understand it and repeated training of these things.
But then the policy’s on paper, they’re actually implementing it uh is also very important.
And it can be the implementation of something like ‘someone beat me today.’
Like one of the staff suppose he’s got hit by somebody.
We don’t say “oh that must be his behavior,” we say “why did he beat you, what did you not understand?”
You know and talking through these things. We have protection committees where these things are regularly discovered.
And you know even though this is a place where people are very loving,
we have at least one discussion in the protection committee every week.
Because somebody’s body language may have been disrespectful,
somebody’s words may have been disrespectful.
We don’t wait for a beating to happen before the protection committee gets activated.
So it’s all these little attitudinal things that actually come in much more in the protection committee, so there’s that.
Then we are, we have nothing in writing but a common understanding between parents and ourselves.
That we will report everything that happens from the smallest scratch,
from a mishap to a mistake, to and something that was done intentionally, you know.
So we have to, we have to and and parents are extremely-
Sometimes the parents say “things that happen in our house are worse than this.”
We said, that’s okay, it shouldn’t happen.
And sometimes saying, that you know calling your child, your son or your daughter, adult, a donkey on the phone,
“hey donkey, look at me,” you know that kind of thing, we talk about these things with the parents.
Because if, we’re not only calling people out at Arunima for things that are not respectful,
if we find a parent not being respectful, we talk about it.
And the only reason we can talk about it is because we are open about the things that happens over here and things that happen over here as well.
We also have CCTV.
Now that’s a very controversial sort of issue.
And uh but I don’t have an answer at this point of time.
I just think that CCTVs are, nobody sitting and monitoring CCTVs the whole day.
I have access to the CCTVs and no, I don’t have the time to monitor them.
But if ever something happens.
If there’s like an unexplained bruise or something,
you can always go back and find out what happened in that.
Or if somebody, if two guys have a fight okay, there’s like testosterone over here you know.
Two men of 25, 30 years old riling each other up, what happened, we can even watch for that.
We can even show footage to them and say “see, okay this happened, this is how it happened, you did this.”
And what could you have done instead, you know.
So we use that, so yeah everything possible.
And any new ideas that come up for monitoring, we do that as well.
We do a lot of reading, a lot of training.
What type of staff is employed at ‘Arunima’?
When we started Arunima, we uh were thinking about staffing.
And obviously the first thing that we did was to get special educators.
But very soon we realized that special educators have a very different sort of training, a very different type of philosophy.
And often it’s about fixing the person and that is not what we wanted.
And so we struggled a lot with this but we started doing a lot of in-house training.
Then we got together with some other organizations and said let’s develop,
with the number of residential centers coming up, let’s develop some sort of course.
And so uh with a lot of brainstorming and a couple of years,
we’ve developed something called a Direct Support pro- Professional training program,
the DSP training program.
And this is actually run by the Keystone Institute.
And we support them to train people all over India, to be Direct Support Professionals.
And at Arunima we have trained Direct Support Professionals as well.