This Article is From Jun 29, 2013

India Matters: On our own

New Delhi: It is 6:30 am at Tara Apartments, South Delhi. You can hear the sounds of early morning, of young adults getting ready for a work day.

Maya, Varuni and Kanika are in their late twenties and have been flatmates for over a year. This flat is a space they share with a project coordinator and a domestic help.  

All three have intellectual impairment. Kanika and Varuni have Down's syndrome, a genetic condition, while Maya has cognitive issues.  

They are employed as teaching assistants in different city schools, and there are school buses to catch.

Maya is worried Varuni is late. Before she leaves, Kanika has to plan for lunch and dinner for everyone with Sushila, the domestic help.

She tells Sushila, "We'll have cauliflowers with potatoes and rice for lunch. And these two oranges are the fruit for today. At dinner we will have Maggi."

All three have learnt to give instructions beforehand.

The three are part of a unique experiment in assisted independent living. Like most young people with special needs, they had so far been sheltered and taken care of by their families. Now they face the challenge of thinking for themselves and looking out for each other.

The responsibility of managing house is shared- whether it is menu planning, paying water and electricity bills, doing the laundry or money management.

As teaching assistants, they help the teacher in the primary school, with special children or children from an economically weak background.
They help with colouring, with distributing material, with photocopies and are paid a small stipend.

Between 3:30 and 4:30 pm they are back in the flat. And about three times a week they immediately have to get ready for a physical fitness routine with their instructor at a nearby park. 

Sunil Bhatt, who is an adaptive physical education trainer, says it helps them with their life skills as it gives them energy and stamina.

Before they can relax, they have to prepare for the next day. It could mean completing an assignment they have brought home from school, getting the ironing done, or doing the grocery shopping.

Each activity has been designed to increase their capacity for taking more ownership and responsibility at home.

Abha Kolhi, who is the project coordinator, said, "We try as best as possible not to interfere with them because that gives them the confidence that they can do on their own. It also gives them the confidence that their voice matters. That is the most important thing."

Only after everything is organised, do they unwind with TV programmes, or log on to Facebook.

This is their weekday module when they go to work. During the weekends they are off to visit their families.

What may seem to be the simple, well-balanced life of hostellers, is uncharted territory for young people with intellectual impairment.

Most have never spent a night out away from their families, unless it is stay at the homes of an aunt or a cousin.

 "I was nervous initially. Then I realised that two of my friends are here," says Kanika.

Agreeing, Varuni says, "When I first came I was nervous. Later I realised that it is very good, very nice. I left my parents, and my sister to come to Tara Apartments."

They deal with day to day crises, like sudden leave taken by the domestic staff, or even a broken curtain rod the day they arrived.

Clearly they are living with this project, and growing with it every single day. The premise is that everybody responds to stimulation that is meaningful to them.

Special educator Carole Paul says the genesis of the idea of assisted independent living came four years ago. Her team, now known as SAIL, had organised adventure camps for young adults with special needs.  She found that though they had achieved growth in many areas, there were gaps in some basic skills.

Carole, who is founder member of SAIL or Supporting Assisted Independent Living, said, "We addressed basic skills in terms of management, time management, caring for yourself, even in terms of their grooming. Though they were all working and going to regular places, the awareness that I need to look a certain way, I need to conduct myself in a certain way, I need to take care of certain things was a bit missing in many instances. They had also not developed the skill to be together. We also wanted them to really understand that they were in the driving seats in their own lives which is not what comes to them naturally."

SAIL conducted a weekend stay programme for a year, gradually moving to the weekday module, which posed the real life challenges of combining work and leisure.

It has led to subtle changes in family dynamics.

Adhira Agrawal, Varuni's sister, said, "I really treasure the weekend that I get. Earlier I probably took it for granted.  Now I want to make an effort. So we go for an outing, for shopping or coffee. Now I know she has a busy schedule and I need to take out time for her. So it puts us at the same level."

According to Varuni's father, Rajeev Agrawal, "Varuni didn't go there because she lacked friends. She went there to learn how to live away from her parents. Parents can't remain forever and other siblings will eventually drift away. So she needed this valuable experience on living alone."

Kanika's parents emphasise the power of early intervention. They admitted their daughter to a mainstream school, even though the school did not have special educators at the time. She went through a vocational programme, and did a summer job with Pizza Hut for about four years. At every stage, they tried to push the envelope in what more she could do.

"All children have to move out from the ambit of their parents. The learning that comes from peer group interaction, and peer pressure is very different from parental control. Every parent says I want to make my child stand on his or her own feet, and they mean it in different ways, whether it's an education, how to make a living for themselves. It's really no different. She's a child like any other child. Helping her to stand on her own two feet just has different parameters," says Anil Dang, Kanika's father.

Kanika's mother, Gita Danga , adds, "We think it is important because earlier there used to be institutionalisation or people merged into a family and never came out. Then there was what I called modern day institutionalisation, which is a little bit of a respite home. I think our belief was that the more independent she is, the easier it is for anybody to look after her. "

Maya's mother, who's a single parent, lost her husband 15 years ago. Though the costs of the program have been high, Asha Singh has supported it. 

"Maya is now willing to engage in house work. Things like laying the table became real words rather than some household chores. Even when we would go out socially, the extended family notices that there is more involvement in trying to be helpful, in trying to do things," she says.

The project is moving to the next phase. Now the young people will learn to live without the project coordinator, who was like a mother figure.

The domestic help stays. The plan is to make it inclusive living, by including some PhD students as flatmates.

Scaling up the model will help to sustain it by meeting some of the costs of running the home.

It promises to throw up new challenges for the young women and help them build new skills.

These young people have learnt to exercise choices and control in their everyday lives. The evolving project is a solution, but one size will not fit all. A range of options need to be developed.  Despite the huge need, assisted independent living models are practically non-existent in the country.