The majority of the 240 million children with disabilities worldwide live in low- and middle-income countries such as India, where services for them are inadequate. Two decades ago, Ummeed was founded to address this huge gap.

Since we were a team of pediatricians and therapists, Ummeed started as a clinic that offered diagnosis and therapy to children with diverse visible and invisible disabilities. Over time, however, we realised that our understanding of disability as a medical deficit was fundamentally flawed, and so were our attempts to fix it.

If we viewed each child as unique, and considered disability as a part of neurodiversity among children, we could begin to work towards the outcomes that we hope for all children—going to school, playing cricket, creating art, and having fun with friends and family.

It is important to recognise that children with disabilities may never become ‘normal’ and yet have a right to do the things that other children do. Thus, our key metric of success should be participation in activities at home, school, and the community, and not merely academic achievement or an increase in vocabulary or IQ. Recognising this led us to work with not just the child but also the entire ‘village’ that contributes to raising the child, including the family, school, community, and other systems. Unfortunately, most parts of India are not ready for this kind of thinking, and the reasons for this are many—lack of awareness, knowledge, skills, and policies, among others.

Approximately two years ago, we decided to use a grant from Azim Premji Foundation (APF) to try and change the various systems that impact outcomes for children with and at risk of disabilities—in three pilot geographies of India.

According to FSG, shifts in system conditions are more likely to be sustainable when working at all three levels of change: implicit, semi-explicit, and explicit. Below we share our experience of working at these three levels over the last two years.

But we should perhaps start with a disclaimer. For now, we may best be described as aspirational systems changers who are trying to understand how to bring about such a shift. However, we do believe that our learnings can be useful for others, and it is with this hope that we share our journey here.

  1. Transformative changes: Working on mental models
  2. Relational changes: Working on power dynamics and relationships
  3. Structural changes: Working on practices, policies, and resources

Read the full article about systems change by Anita Limaye, Koyeli Sengupta, and Dr. Roopa Srinivasan at India Development Review.