Teacher Warrior 2019: Sonalee Shyamsundar – Disabling Taboos

Founded in 2011, Urmi Foundation has always aimed towards working for children and youth with intellectual and developmental disability from the low income communities in Mumbai. They provide an inclusive and adaptive environment along with academic and social skills to these beautiful children through their curriculum. Sonalee Shyamsundar and her foundation implement various programmes with Mumbai Municipal Corporation to work with special children and their parents. 

Becoming a registered NGO in 2012, intense research and analysis was carried out by the foundation in order to understand the social, economic, and cultural context of children with development disabilities and their families. Shyamsundar’s motivation for starting Urmi began after the research. “It revealed that more than 60% such special children lacked schooling facilities and their families weren’t aware of the adverse consequences that would follow if these children weren’t provided proper care.”

Starting point 

“We work with multiple disabilities such as autism, cerebral palsy, Down’s syndrome, ADHD (Attention Deficit Hyperactivity Disorder), and other disabilities affecting a child’s social, personal, recreational and academic skills permanently. Such disabilities are not curable and we, at Urmi, have adopted and integrated inclusive methods and approaches that help children, with severe to mild level developmental disabilities, to achieve their best potential.”

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In her research, she noted the high dropout rates, and the lack of or poor understanding about the disabilities on part of the parents. Education being a secondary issue, she shares, “Such children are treated violently, ignored by their siblings and other family members.” It moved Shyamsundar to design a triad model that included advocacy, infrastructure, and capacity building and awareness. “We implement therapeutic, academic and capacity building based intervention having sound measurement and evaluation tools. Every programme follows a chain beginning from assessment to impact evaluation; it is carefully designed and implemented by RCI registered and trained special educators and psychologists.”

Step by step

“In the year 2019-20, we are supporting 21 schools for all age groups. We will support 2000+ beneficiaries in the noted year. Till date, Urmi has supported over 7000+ beneficiaries. The project is divided into three parts namely BMC special schools (supports children of ages 7-18 years and their parents), Community schools (supports children of ages 0-6 years and their parents), and Vocational training (supports special youth of ages 18 and above, and their parents).”

“We also have published manuals specifically designed for special children such as Sexuality education, Toilet training, Disability detection, prevention and further steps (early intervention), and Vocational training for parents to start self-help group of youth with disabilities.”

Overcoming challenges  

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“When I started working on our model, I realised how expensive available educational resources can be sometimes. The environment observed at home was supportive, and the syllabus was in English or non-regional language. Hence, we redesigned educational assessment and syllabus according to the conditions of the low-income communities and slums of Mumbai. Our goal was to simplify special education and therapeutic intervention. Initially, it was challenging to make people understand what is special education and how it benefits the child. Despite staying in Mumbai, a modern city that’s equipped with all facilities, majority of the population lacked awareness about disability and ways to deal with it. From violent treatment, a plethora of insults, rude reaction to being tagged as ‘teachers of the mad’, we faced it all. However, the community and parents began to show trust as we talked to them through awareness programmes. The word spread in the community as parents saw change in their child after being enrolled in Urmi. The Urmi team has always believed in patience as in our field the gestation period can be very long; a child may learn to hold a pencil in six months or more. We assured that every child we know is being benefited,” she adds.

Persevering on

Sonalee believes the key to overcoming challenges at the programme level includes “having a strong and impactful assessment system that indicates areas of improvement. A healthy dialogue with parents and community members is a must. Our well-trained and experienced team and advisory board members have been an immense support.”

“But in case of attitude change, persistence and courage remained our only weapons till date. At Urmi, challenges are overcome through empathy. For example, to design the toilet training manual, we personally use dirty toilets in the community. Thus, we cleaned them and involved the community as well.”

Shyamsundar’s biggest motivation that empowers her despite the varied challenges is the “smile of children and trust of parents we work with.” She dreams of a world that “integrates the population having developmental disabilities into mainstream society through adequate distribution of resources and policy support.”

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Describing the foundation’s structure as democratic, Shyamsundar’s zeal is inspiring. “At Urmi, we inspire each other and involve everyone. From making budget, finances to implementation, everything is shared with the team and their opinions are taken into consideration. I personally believe in decentralised leadership. Every year, we select parents from the community and train them to become leaders to take our mission forward. Multiple organisations have adopted our model which shows that the work we do is replicable. It’s all about spreading love and helping those who need our help.”