The stories of disability in India are rather mixed: heroic individuals alongside neglected communities, progressive policies alongside lackadaisical implementation, selfless NGOs alongside crumbling state infrastructure. But what remains constant through all of them is the gap in service. India has over 2 crore people with disabilities and hundreds of organisations working to serve them. Yet, fewer than 40% of them are reached by professional care, whether provided by government or a civil society organisation.
The most marginal among this enormously underserved community are moderately to severely intellectually disabled children and adults, most of whom need intensive care throughout their lives. At FIG, we have pioneered a scientific yet empathetic approach to supporting children and adults with neuro-developmental disabilities (NDD, a scientific term for a range of intellectual disabilities). When we started the FAME India school in 2001, there were fewer than a handful of organisations working with this community whose needs are typically much greater. Today, 17 years later, FIG has grown to provide a much wider range of services and resources for not only school-age children but also adults and their families/caregivers.
FIG remains a pioneer in both, serving this niche community as well as in developing methodologies and approaches, especially in working with adult communities. This does not make us proud, it makes us even more determined to intensity the change we are creating. At FIG, we are building models of best practices to create enabling environments for persons with NDD, from schools to respite care centres to lifespan management programmes. Because we believe that while the need is enormous, we must remain grounded in our commitment to bettering the quality of each lived day for each disabled person.