Dr. Vibha Krishnamurthy, developmental pediatrician and founder and medical director of Ummeed Child Development Center believes that all children with developmental disabilities can be included in society and reach their maximum potential if given the chance. She talks to Vibha Singh about her journey…
Saad, suffering from Down syndrome is five and a half years old and goes to a special school. What for others are simple tasks, were often huge challenges for Saad. In the two years from 2013-2015 after being part of the Ummeed’s Early Intervention Center (EIC), he has overcome many hurdles. He can now wear his own glasses, read from books and feed himself and make his own choices. But there are many like him who are not so lucky. As there are over 52 million children in India with developmental disabilities and over 650,000 in Mumbai alone. Out of these, not even a quarter have access to quality care.
Q- What was the inspiration behind starting Ummeed?
During my fellowship in Boston I was struck by the disparity between services available to children with disabilities in India compared to US. When I returned this spurred me to start an organization that could provide services for children with disabilities and their families in India.
Q- What exactly do we mean by developmental delay?
A- Child development has stages that almost every child goes through regardless of when it happens. A child with developmental delay will go through the same stages just at a different time. It is a condition where a child is delayed in attaining the require age appropriate milestone in the specific age beyond the standard deviation. A simple example is that a child is 12 months old and he has not achieved the sitting balance, then the child is considered as a case of developmental delay. But if he is slightly or only temporarily lagging, that it is included in the delayed milestone category. There are six stages of child development which includes gross motor, fine motor, cognition, social-emotional, speech and activities of daily living. Delay can occur in one or many of these milestones.
Q- What is the importance of early intervention in these cases?
It is never too early. When a problem is identified and the children are put into an early intervention program the faster the child’s improvement. The first 3 to 6 years of a child’s life are most critical in development. If we identify delays in development early we can do a lot to help children develop to the best of their ability. As children learn by interacting with the world around them. By speaking with others, playing with toys and engaging in fun activities, children develop skills that help them learn and grow. When a child finds it difficult to engage with others due to challenges such as poor communication skills, poor coordination skills, low attention span, or behavioral issues, their ability to learn and acquire important skills may be compromised.
Q-When should the parents worry about the child’s development?
Parents and care takers are always the first persons to notice that something is wrong. Act on this doubt. Go to the concerned well-informed professionals . Get your doubts clarified by the appropriate professional with substantial informative answers. Have the child evaluated.
Q- What are the activities undertaken at Ummeed?
Services for children with disabilities and their families, training for all parents and professionals working with children, advocacy and research.
Q- What kind of training are you providing to the social workers and your team?
A-The aim of the training programmes is to increased sensitization and awareness about developmental disabilities amongst all stakeholders. Supporting parents in learning about disabilities, advocating for their child, and effectively facilitating their child’s development and creating greater awareness among policy makers.
Q- What are the challenges faced by the organisation?
To provide quality services we need to pay our professionals well. Finding and keeping good professionals is a challenge. We also struggle to build awareness about the issue of childhood disability amongst common persons, funders and the government. Lack of awareness among the society and medical professionals which resulted in total neglect in this very crucial area of early childhood development and prevention of developmental disabilities. The other most important issue is the lack of understanding on the need and benefits of external stimulation of children such as hugging the child, speaking to the child, etc. during infancy.
Q- How supportive has been government in your efforts?
So far our liaison with the government had been through our work with BMC schools to include children with disability. We have also worked with the government through the RCI and National Trust, both government bodies that advocate for the rights of children with disability.
Q- How do we compare ourselves globally providing support to children with developmental disability?
India has a very long way to go with respect to both attitudes towards and services for children with disability. Yet persons with disability, parents of children with disability and NGOs like ours have done much to change the landscape over the last two decades.
Q- Tell us something about the Ummeed walk?
The Ummeed walk is our biggest event for awareness building and fund raising. This year we walked 55 km in South Goa over 12 hours with more than 150 people. The walk is popular for its scenic beach route and the fun and frolic walkers have apart from the money it raises for children with disabilities. The walkers walk 3.5 hours until lunch-time with like-minded people. After lunch, walkers walk to the southern tip and back, enjoying the sunset and, waves. The next walk is scheduled in January 2018.
Q- How has been your journey in past five years?
The past five years have seen a huge growth at Ummeed and emerging awareness about child development among parents and professionals. We have supported nearly 1100 families and conducted 7,000 clinical sessions each year.
Q- What are your future plans?
We are organizing the second International Developmental Pediatrics Association Congress in Mumbai in December 2017. The theme of conference would be ‘A World of Difference’ where professionals from disciplines working with children would explore the continuum of developmental differences in childhood, children at risk and with disabilities. Many issues would be discussed here which would help bridge the gaps in policy, practice and research that exist between low and middle-income countries (LMICs) and high-income countries (HICs).