Mumbai: Until three years ago, Arti Khade had never been to school. She has a developmental disability and her parents had so protective that they were not comfortable with her leaving their home in the Lal Donger slums in Chembur. Now 13, Arti has been going to Anandnagar School in Collector’s Colony, Chembur, and it’s her favourite place. “More than home, Arti loves to spend time in school,” her mother says. “She is sad whenever there is a holiday or during vacation.”
Muskan and Mumtaz Khan (names changed) are twins who live in the Vashi Naka area, and have a difficult family background: their father would beat their mother, regularly and brutally. Both girls have severe developmental disabilities, and were unable even to eat and drink unassisted; they also have chronic epileptic attacks. But today, they got to a local school, and are also getting vocational training. They are able to take care of their basic needs.
In both cases, the turnaround came with the intervention of an NGO, the Urmi Foundation. Urmi’s workers made multiple visits to the families, and encouraged and helped them to enrol the girls in school.
A desire to make a change
Sonalee Shyamsundar was a merit rank-holder in college, and has a Master’s in Political Science from Mumbai University. While pursuing her post-graduate studies, she also enrolled for a diploma programme in Human Rights. Her thesis was on the rights of unorganised labour in the turmeric industry.
Researching her thesis woke something in her; she was deeply affected by the plight of the workers she spoke to. After her degree, she joined Prerana, an NGO, where she implemented education and care programmes for sex workers; then she joined another NGO, Masoom, which works with night schools. Then, a holiday changed her life even more.
At a random road halt in Sri Lanka, necessitated by her being prone to motion sickness, she encountered a family with children with developmental disabilities. “I noticed that special children there are treated with great humility and are adored by all,” she says. She knew the scenario was not so friendly in India, especially amongst the underprivileged.
On her return to Mumbai, she did exhaustive research on 18 suburban schools for children with developmental disabilities run by the Brihanmumbai Municipal Corporation (BMC). What she found apalled her.
There was, she says, “inadequate teaching methods and planning, limited teaching staff, absence of therapy support and a high drop-out rate.” The problem was not just with schools: “At community level, especially amongst the underprivileged, there is a lack of awareness and an apathy towards special education. Out of every 10 special children, only three are enrolled in school. The majority of parents, almost 90%, were unaware about disability and had either poor or wrong information.” An environment, in short, that is the very opposite of inclusive, one that cried out for special education intervention.
Simple interventions
Ms. Shyamsundar started Urmi Foundation (the Marathi word means a desire to do something) in July 2012, with a clear goal: “facilitating academic growth and social inclusion by creating awareness, increasing competency and provide therapeutic support for the special population.” When she started out, the intervention methods Urmi would use, she decided, would be “extremely simple, direct and easy to adopt for people living in the slums.”
Urmi’s work began with a pilot programme with a BMC school in Chembur in 2012.
“The response was overwhelming, and motivated us to reach out to more,” Ms. Shyamsundar says.
Now, the foundation has ‘adopted’ six BMC special schools — in Anand Nagar, Dadar, Bhandup, Parel, Ghatkopar, and Sion — and has also started seven community schools of its own, in Vadala, Sewri and south Mumbai.
Urmi has designed special programmes that Suvarna Tambe, a project head, describes as “adoptive and adaptive.” She says, “We specifically aim for two core objectives through Urmi’s intervention: social and academic.”
To achieve these, aside from functional academics, there are programmes including art therapy, occupational therapy, and speech therapy. “Every programme we implement is carefully designed with impact assessment tools,” says Sadaf Qazi, clinical psychologist and Art Therapist.
A key component is their outreach programme, through which they network within the communities in the vicinity of BMC special schools. They meet families who have children with developmental disabilities and persuade them to send the kids to school: for children from seven to 17, the team encourages the families to enrol them in the BMC schools; children below seven are enrolled in Urmi’s community schools for early intervention.
Urmi also has designed material aimed at parents, for instance, manuals on sex education and toilet training for their children.
“This year, we have also trained parents to implement occupational therapy at home, using simple materials like tyre tubes, grains, and homemade clays, which are easily available,” says Gauri N. Salaskar, project head.
Aside from these, there are also community workshops on disability awareness.
Work in progress
Through their programmes, Urmi now reaches over a thousand children.
Bhushan Malwankar, special educator, and head of the BMC school in Anand Nagar, says, “With the help of Urmi, the number of children joining the school increased dramatically in the very first year itself. In fact we had to move to bigger premises in 2015.”
Pravin Warde, special educator at the school, says, “There was a paucity of teachers. With Urmi’s support, not only we have more teachers but we have designed programmes in collaboration with each other.”
Despite their success, Ms. Shyamsundar isn’t complacent. Challenges remain: the biggest one is still convincing parents to send their children to the schools. Poor sanitation and resulting health and hygiene issues is another. “Most of the parents are unaware of the nutritional needs of these children and this is one of the main reasons for absenteeism as well,” she says. “To tackle this, we try to raise awareness on health and nutrition and conduct workshops for parents.”
And then there is funding, which is always short. “We do get individual donations, as well as funds from corporate offices. But more money will enable us to reach out to more people.”