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VIBHA KRISHNAMURTHY

India,

A trained pediatrician by profession, Vibha Krishnamurthy is creating an integrated medical and therapeutic support system for children with developmental disabilities in India. Empowering and supporting families, Vibha’s organization, Ummeed (Hope), is changing the way families understand and care for their developmentally-disabled children.  

This profile below was prepared when Vibha Krishnamurthy was elected to the Ashoka Fellowship in 2007.

Fellow Sketch

Vibha Krishnamurthy is creating an integrated family-centered support system for children with developmental disabilities in India. Vibha’s organisation, Ummeed is changing the way families and communities understand and care for children with developmental disabilities. 

Vibha is building a comprehensive model that empowers families to care for their children with fewer resources,  and a diminished reliance on expensive doctors and therapists. Ummeed is a first-of-its kind center where early and accurate diagnosis of developmental disabilities is followed by in-house professional medical and therapeutic care. Since 2001, Ummeed has been involved in developing, using and documenting best practices to care for children with disabilities and their families, including those who live in environments that lack resources. These practices are constantly embedded into their training curricula aimed at parents, community workers and a wide range of professionals. Ummeed’s flagship program, the Child Development Aide imparts skills to community workers that help them promote good child development practices, identify children with disabilities and teach their families simple interventions. The training programs alone reach out to over 30,000 children, indirectly each year. While, Umeed continues to provide clinical services to almost 1200 children with developmental disabilities every year, it also builds skills of trainers in other CSOs and the government to create access to medical and therapeutic services. It’s goal is to train 100 partner organizations and work towards training trainers from at least 5 of these in the near future. 

Ummeed professionals engage in advocacy nationally and internationally, to implement best practices at various levels of the society. While, they build awareness in communities, they also sensitize policy makers to the importance of early childhood development and the needs of children with disability. Presently, Ummeed is part of a four-country research project, funded by the National Institute of Health, USA to standardize a tool for monitoring child development for children upto the age of 3 years. This tool will be ready for use in India and other low and middle income countries in 2014. Ummeed plans to use this standardized tool, “The International Guide for Monitoring Child Development” (IGMCD), for a nation-wide monitoring of child development for children under 3 years in India. This monitoring will reveal the real situation that exists in India and help both CSOs and the government to respond better. 

Vibha’s involvement at the international level, where she is part of 3 different WHO groups that influence policy for Children with disabilities and Early Childhood Development has strengthened interventions on the ground. 

Vibha intends to continue the development and documentation of best practices for children with disability and their families in resource-poor environments. She also continues to build awareness and influence policy in the area of early childhood development and disability.

Note: This was updated in December, 2013. Read on for the ELECTION profile

INTRODUCTION

A trained pediatrician by profession, Vibha Krishnamurthy is creating an integrated medical and therapeutic support system for children with developmental disabilities in India. Empowering and supporting families, Vibha’s organization, Ummeed (Hope), is changing the way families understand and care for their developmentally-disabled children.  




THE NEW IDEA

There are an estimated 35 million children in India with developmental disabilities, yet with only a handful of developmental pediatricians in the country, and with diagnostic and therapeutic medical services equally rare, few of these children have access to the care and support they deserve. 

To transform the way families and professionals are able to diagnose, and care for developmentally disabled children, Ummeed is a comprehensive, service-provider model that empowers families to, with support and training from professionals, care for their children with fewer resources and a diminished reliance on expensive doctors and therapists.

Ummeed is a first-of-its kind center where early and accurate diagnosis of development disabilities is followed by in-house professional medical and therapeutic care. Training and education programs for parents follow so that families can continue proper care and therapy at home. In a medical system that rarely works in a cooperative and coordinated manner to provide the best care for patients, Ummeed provides medical and therapeutic professionals with the opportunity to work in tandem, as resident physicians, building relationships and empowering parents.

As parents learn from professionals, receive counseling, and learn care and therapies they can provide for their children at home, Ummeed also trains those interested to provide training and support for other families who come to Ummeed. Through this training, Vibha hopes to expand the reach of Ummeed far beyond its physicians and diagnostics to reach children and families across India and the entire disability sector.

To further include underprivileged areas that may not otherwise utilize Ummeed’s services, Vibha is partnering with citizen organizations (CO) that work with disadvantaged children in non-formal schools and nurseries. She is also training teachers to diagnose disorders so that they may modify school curricula to children’s learning pace and capacity, and acquaint parents of children with basic caregiving skills for different disabilities. Through Ummeed’s in-house work with children and families, outreach to schools and COs, and work with the media and academia, it has already benefited 5,000 families in Mumbai.




THE PROBLEM

Developmental disabilities, as described here, includes an entire range of physical and mental disabilities, including Autism, Asperger’s Syndrome, Cerebral Palsy, Down Syndrome, Mental Retardation, Attention Deficit Hyperactivity Disorder, Learning Disabilities, etc. Currently, children with these disabilities are often not diagnosed correctly, if at all, in India. Without proper diagnosis or awareness on the part of the family or the larger society, these children often end up as outcasts, marginalized, and ultimately a burden on their helpless families.

In India, disability is still thought of as a tragedy and many believe it would be better to be dead than disabled. Families often feel there is nothing that can be done for their disabled children. Quality of life and happiness are thought by many families to be out of reach for disabled people, while those who can afford it often rely heavily on external help to cope with their children’s disabilities.

Most families can find neither the resources nor the education necessary to help their children reach their full potential. Doctors who can diagnose and therapists who can treat developmental disabilities are hard to find, even in the major cities of Mumbai and New Delhi. These doctors and therapists, despite their best intentions, are often self-trained with few opportunities to learn the latest research and treatments for their patients. Further, these therapists and doctors are rarely able to coordinate their diagnosis and treatments for their patients. They are generally too busy or over-burdened to speak in-depth with families about their children’s disabilities and are often not equipped or trained to diagnose all of a child’s possible disorders.

While doctors and therapists are often unable to provide all of the diagnoses and treatments disabled children need, they are also ill-equipped to educate and empower parents to better their care for their children at home. There are a variety of therapeutic techniques that parents can learn to do for their children, yet many doctors and therapists either don’t know how to or don’t have time to train children’s families. Developmentally disabled children need early diagnosis and intensive early care, but also life-long therapies to harness their full potential and live happy, fulfilled lives. By not encouraging and training families to provide therapies and proper treatment for their developmentally disabled children doctors and therapists are depriving children of what could be their greatest resource.

While the obstacles to proper diagnosis and care for developmentally disabled children are challenging enough for those families that are informed and wealthy enough to seek treatment for their children, for the millions of other families who live in rural areas and can’t afford care and treatment, the obstacles are almost insurmountable. It is these challenges that Vibha seeks to address through the work and outreach of her organization, Ummeed.




THE STRATEGY

With Ummeed, Vibha is building a “center of excellence” and a model that can be replicated in other parts of the country. Ummeed functions as a facilitator of treatment for developmentally disabled children, putting the family first and providing care regardless of parents’ ability to pay.

With early diagnosis and appropriate early care so crucial, Ummeed functions with a team-oriented, approach that puts resident pediatricians, therapists, special educators, counselors, and support groups together to provide coordinated care and treatment for each child and their family. A case coordinator keeps things organized while the team communicates extensively amongst themselves and with the families through informal discussion, weekly team meetings, and periodic reviews. Developmentally disabled children and their families who come to Ummeed are beginning to understand the care and support they and their children receive are not the work of any one doctor, but the work of a team and a replicable institution that provides a variety of different medical, educational, supportive, and therapeutic resources.
 
The team-oriented and highly coordinated approach to care and treatment at Ummeed does not exist for or among the professional staff alone. Indeed, it is the highest goal of Ummeed to empower parents and families to continue the care and treatment of their children at home. Ummeed and the professionals in residence hold a deep respect for the in-depth understanding families have of their children, and solicit this sort of information to better design treatment and care plans for the children. Parents and family members quickly learn that they have an important role to play in their child’s care, taking part in support groups, counseling sessions, and educational trainings on home treatments and therapies. For families who can not come to Ummeed regularly, home programs are given so that families can continue their children’s care at home. Similarly, a compact course has been designed for parents of children with autism where information on the disability and caregiving skills are imparted. This has been especially beneficial for parents who do not reside in Mumbai, but in the suburbs and beyond. In the end, Vibha hopes to create families of professional caregivers around the country who will train others.

By the end of 2007, Ummeed reached out to 800 to 1,000 children a week with its services and is in the process of setting up five satellite units for ongoing care. In addition to scaling up, a key part of the plan is to develop scientifically tested methods of providing care that are more cost-effective and even less dependent on highly-skilled professionals.

Vibha and her colleagues at Ummeed are also reaching out to academic intuitions, media outlets, and COs to share their research and approach. Professionals from Ummeed regularly make presentations at national and international conferences, workshops, and seminars sharing their latest findings about the newest therapies and approaches to care. They also disseminate information in schools, to COs like Action for Autism, and to groups of healthcare professionals through lectures and literature. Ummeed has also prepared teaching modules (e.g., taught as part of the teacher training sessions by the Shapoorji Billimoria Foundation), and runs pre-conference workshops and healthcare training modules. A resource directory for parents of developmentally disabled children all over India is being put together to help families find the best care for their children wherever they live. This resource directly follows one produced for the Mumbai area by Ummeed in 2006.

Thus far, Vibha’s biggest challenge has been generating awareness among poor families and encouraging them to find their way to Ummeed and its services. To overcome this challenge, Vibha liaises with other CO’s working with underprivileged populations. For example, Vibha is working with Ashoka Fellow Shaheen Mistri’s Akanksha education program to diagnose and treat non-formal students at construction sites. With other COs, Vibha is training teachers to effectively diagnose and address challenging behaviors in the classroom. Since the effect of therapy in a classroom is limited, customized behavioral programs are designed to suit the students’ pace of learning and special needs. At the end of the course, the schools appoint a counselor to continue the system.

With the hope of encouraging the kind of early intervention and diagnosis that is now relatively common in other countries like the U.S., Vibha has begun a model playschool for children (two to five years old) with serious disabilities, where children have the opportunity to socially interact with each other. She hopes to expand this to cover children between zero and two years and include mothers in the group. The early intervention center is run by teachers, rather than disability-specific professionals to encourage replication across India and a new culture of awareness among teachers and educational institutions.




THE PERSON

Vibha was just eight-years-old when her grandfather, a doctor, passed away, but she grew up listening to stories of his legendary care and kindness towards patients. These stories were the first sources of inspiration for Vibha. At 17, she took the All India Medical Entrance Exam with a deep interest in pediatric care. Her training in Delhi left her highly-skilled but frustrated with the lack of resources and scope for interacting with the families of the children she treated. 

After moving to the U.S. with her husband some years later, Vibha began studying childhood development and received a fellowship to work at Boston Children’s Hospital. Her experience furthered a deep resolve to return to India and bring world-class care to children there.

Upon returning to India, Vibha spent several years working at the well-known Jaslok Hospital with the hope that the children’s facility she intended could be founded in the hospital. When bureaucratic hurdles became insurmountable, Vibha formed a team of colleagues and coworkers from over the years to join her in building a new model for childhood developmental care. Today, Ummeed stands as a testament not only to Vibha’s vision but also to her persistence and devotion to the developmentally disabled children of India.

Vibha lives in Mumbai with her husband and two sons.




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