How we started, how we grew

In 1994, Mr RoyLatika Roy and Her Husband Husband & wife : Mr Roy with Latika Roy approached Jo and Ravi Chopra with a request and a gift:

“Do something in memory of my wife”, he asked. “I’ll contribute 200,000 rupees.”

July, 1994: Latika Vihar, named after Latika Roy, opened its doors. It was a neighborhood club for children featuring creative pursuits like dance, music, art and craft. It had a library, a toy room and outdoor equipment and every now and then a special event like story-telling, a puppet show or a cooking class. The children loved it.

In the early days, it was all-volunteers except for Mala Bora, the coordinator, and Satya Pal, the gate man. Jo used to collect toys and books on her visits to the US and she would persuade the airlines to let her bring them all back for free. One memorable trip, she managed to carry an extra six boxes for free (all huge), stuffed with treasures.

Latika Vihar was only open for two hours every afternoon. Mr RoyLatika Roy and Her Husband Husband & wife : Mr Roy with Latika Roy couldn’t bear the waste of space. He started coming to Jo’s house in the morning and pestering her to do more. “How about a school for children with disability?” he suggested.

October, 1995: Jo finally gave in. By then her own daughter, Moy Moy, was struggling in mainstream school and it was clear she needed something different. Karuna Vihar was born. Vina SrivastavaVina Srivastava and Kamini Sabharwal, good friends from the hood, joined in to help find staff and Volunteers in Service Overseas (VSO) introduced the Foundation to the remarkable Paula Hughes – a special educator and trainer from the UK. Her brief was to come for two years and train the KV staff to run the place on their own. She came for two years – stayed for twelve.

January 16, 1996 – Opening day. Four children had been signed up, but for the inauguration (it was pouring rain and shivery cold) only two arrived: Moy Moy and Sakshi. We put signs up in STD booths and doctors’ waiting rooms; we spoke at Rotary and Lions Club meetings, we literally went into children’s homes and begged their parents to send them to us.

By March, the kids were coming in droves. We realized that what we were doing was called an Awareness Campaign. We decided to publish a calendar – in what would become an institution in the world of rehabilitation in India: the first Karuna Vihar Calendar came out in 1997. We are still publishing it today.

April, 1997: Our first grant – for an Awareness Campaign – came from the Sir Ratan Tata Trust. Until then, it had all been private donations, mostly from Jo’s friends and family in the US. The grant marked a turning point in the way we thought about ourselves.

The school, meanwhile, was finding its feet. We started a home management program for children on the waiting list – it was held every 3rd Saturday, a convention which continues today. We formed the Core Group – senior management who met every Tuesday for discussion about policy, new programs and administrative details. We bought a filing cabinet. We got our first computer. Our building became too small and we took more space in the house next door for our office and awareness staff.

By 1998, we had special educators, a doctor and a speech therapist. One of the things we found was that the younger children were when they came to us, the better they did. Dr Linda, our pediatrician, was desperate to open an Early Intervention Centre.
In April, 2002, we did just that – in space donated by St Joseph’s Academy, the largest school in the city. The average age of children coming for the first assessment plummeted – from six to just under two. Pediatricians began referring regularly and the central location, right on Rajpur Road, made the EIC an easy choice for many parents to make. By now, we had a physiotherapist on staff, a consultant pediatric surgeon and several more special educators. We were beginning to look like a professional organisation.

We were concerned, however, about the poorest people; the ones for whom the paltry disability pension the government offered actually made a difference.We knew that to get that pension, they had to have a disability certificate and we knew – through our own hard experience – how difficult it was to get it.

In May of 2002, we opened a Help Desk at the government run Doon Hospital. Designed to cut through red tape and bureaucratic delay, the Help Desk was a friend to the poor. Filling out the forms, navigating the hospital maze, gathering the necessary documentation – it was all made easier for poor people by the existence of the Help Desk.

Back at the ranch, the Karuna Vihar children were growing up. Parents were starting to worry about what would happen to their children once they became teenagers and then adults. Would they be able to find jobs? What were their prospects?

In 2005, we started the College for Vocational Training. At last a place geared for young adults, where serious thought could be given to their concerns and needs. The CVT became a haven for young people, a safe place where they could explore adult feelings and relationships, where sexuality could be openly discussed and where earning a living was taken seriously as a genuine concern.

But always, behind every project we dreamed up, there was the underlying anxiety about finding qualified staff. It wasn’t enough just to have the right degree or diploma. People had to have the right attitude as well; they needed to be creative in their approach to children with special needs. They had to have the spark.

Why not train people ourselves?

In April, 2007, we started our first training centre. Of course, we had been training since Day One. Our own staff, parents, health workers, ASHAs, mainstream teachers – training had always been central to our work. But in 2007, we opened a formal centre and started conducting our own courses. Assistant Teacher Training. Caregivers. Pediatric Therapy. Hanen Communication. Learning Disabilities. We were thrilled with the enthusiastic response to the courses we offered.

At the same time, the demands on our time and growing expertise increased. Younger organizations wanted our guidance in how to register, how to fundraise, how to find qualified staff. People with disability wanted information about government concessions, disability certificates, employment options. We realized that we knew quite a bit.

And so also in April, 2007, we established a Resource Centre for People With Special Needs. Our team collects information about laws, government programs, and other organizations in the country and puts it together in a coherent way for anyone who might need it. A Resource!

Remember the Help Desk? Back in 2002, when we opened it at the Doon Hospital, one of our hopes was that it would increase referrals to the Early Intervention Centre. Alas, that didn’t happen. Who knows why? Maybe parents thought it would be too expensive (located in an elite private school), maybe it was too far. Whatever the reason, we saw almost no children from the Doon Hospital at the EIC.

In 2010, we submitted a proposal to the government of Uttarakhand asking for funding to open an EIC right in the Doon Hospital.

In January of 2011, our request was approved and the Gubbara was born. A Public Private Partnership, Gubbara is a first of its kind in the country and the response from the start has been beyond anything we ever imagined. In our first six weeks, for example, we assessed more children than in an entire year at the Mama EIC. What we love most about it is that people walk in as if it belongs to them. It’s in a government hospital. It DOES.