Ummeed, meaning hope, is a non-profit organisation that was set up with the objective of helping children who have developmental disabilities. The main aim of Ummeed is to help children with disabilities or those who have a high risk of disabilities reach their full potential and be included in society. The organisation that initially had only a handful of members has now 50 professionals, who work in this field, to make things better for special children.
Over 52 million children in India have developmental disabilities and over 6,50,000 live in Mumbai alone. The quantity and the quality of care for these children is often very little and, more often than not, quite questionable. Ummeed aspires to provide quality care to them. Jhon Thattil, CEO of Ummeed, said, “The concept of disability in India is very wrong. Most of us think a child is disabled only when he is physically disabled. Developmental disability is often overlooked. Hence, very often many of these cases go unnoticed, as it may not be perceptible at the outset. The actual numbers are thus much higher than what the records say.”
Dr Roopa Srinivasan, senior development paediatrician and head of research, Ummeed, said, “Ummeed strives to help the children achieve their full potential. Firstly, we have the clinical services, wherein we help a child overcome his or her developmental disability. But over the years we realised that this was not enough and we had to do more. In a country like India, where there is widespread ignorance about disability, children with special needs often go undiagnosed; sometimes even if they are diagnosed, there is poor access to intervention as there is a scarcity of qualified therapists.”
Srinivasan specified that there are different training programs for different professionals and that there are training programs for everyone–from paediatricians to community workers. The primary aim of the training programs is to cover the whole spectrum of developmental disability. Ummeed is currently developing a tool, which will help in early intervention. The tool will not only involve the child, but the parents as well. The training program of social workers and those who help in intervention is meant to reach out to these children. Thattil said, “With the help of the training program, we are able to reach out to about 30,000 children now, but in the next five years our aim is to reach out to at least one lakh children every year.”
On being asked how the NGO celebrated International Day of Persons with Disabilities, Srinivasan replied, “One of the pillars of our NGO is advocacy. We want to raise awareness about developmental disability amongst all sections of the society. Professional street actors performed in many places across South Mumbai. It is really important for the society to know about these children. The child not only needs our or his/her parents’ support to grow and improve, but also the support of the society around him/her. Having these kids around, not only makes us more sensitive but also richer, as far as our thinking is concerned.”