The New Idea

India has an estimated 35 million children with developmental disabilities. With only a handful of developmental pediatricians in the country, and with diagnostic and therapeutic medical services equally rare, few of the 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, Vibha founded Ummeed as a comprehensive service-provider model that empowers families, with support and training from professionals, 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. 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, thus building relationships and empowering parents. At Ummeed, parents learn from professionals, receive counseling, and learn care and therapies that they can provide for their children at home. Ummeed also trains those who can provide services and support for other families who come to Ummeed. In doing this, 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 help underprivileged areas that may not otherwise use Ummeed’s services, Vibha is partnering with citizen organizations (COs) working with disadvantaged children in nonformal schools and nurseries. She also trains teachers to recognize disorders so they can modify school curricula to children’s learning pace and capacity, and she acquaints parents 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, the organization has already benefited 5,000 families in Mumbai alone.

The Problem

Developmental disabilities, as described here, include an entire range of physical and mental disorders such as autism, Asperger’s syndrome, cerebral palsy, Down syndrome, mental retardation, and attention deficit hyperactivity disorder (ADHD). 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 help often rely heavily on external assistance to cope with their children’s disabilities. Children with those disabilities are also often misdiagnosed in India, if they are diagnosed at all. Without proper diagnosis or awareness on the part of the family and society, those children often end up marginalized as outcasts and as a burden to their families.

Most families can find neither the resources nor the education necessary to help their children reach their full potential. Doctors who properly diagnose and therapists who treat developmental disabilities are difficult to find, even in the major cities of Mumbai and New Delhi. Some of these doctors and therapists, despite their best intentions, are often self-trained and have few opportunities to learn of the latest research and treatments for their patients. Therapists and doctors are also rarely able to coordinate their work in an effort to share knowledge and learn from each other’s experiences. Busy or overburdened, they do not 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 the obstacles to proper diagnosis and care for developmentally disabled children are challenging for families that are informed and wealthy enough to seek treatment, for the millions of families living in rural areas unable to afford care and treatment, the obstacles are nearly insurmountable.

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 care for their children at home. Parents can be taught a variety of therapeutic techniques for their children, yet many doctors and therapists don’t know how to train them or don’t have time. Developmentally disabled children need not only early diagnosis and intensive early care, but also lifelong therapies to harness their full potential and enable them to 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 one of their greatest resources.

The Strategy

Because early diagnosis and appropriate early care are so crucial, Ummeed functions with a team-oriented approach that brings resident pediatricians, therapists, special educators, counselors, and support groups together to provide coordinated care and treatment for children and their families, regardless of parents’ ability to pay. With the help of a case coordinator, team members communicate extensively among themselves and with families through informal discussion, weekly team meetings, and periodic reviews. Developmentally disabled children and their families at Ummeed are beginning to understand that the care they receive is not the work of any one doctor, but the work of a team that provides a variety of medical, educational, supportive, and therapeutic resources. By the end of 2007, Ummeed reached 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, Ummeed plans to develop scientifically tested methods of providing care that are more cost-effective and even less dependent on highly skilled professionals.

The team-oriented and highly coordinated approach to care and treatment at Ummeed does not apply to the professional staff alone. Indeed, it is the goal of Ummeed to empower parents and families to continue their children’s care and treatment at home. Ummeed and the professionals in residence hold deep respect for the in-depth understanding families have about their children, and they solicit this information to better design treatment and care plans. Parents and family members quickly learn that they have an important role to play in their child’s care, thus participating in support groups, counseling sessions, and educational training on home treatments and therapies. For families who cannot attend Ummeed regularly, home programs are offered so that families can continue their children’s care at home. Similarly, a compact course has been designed for parents of children with autism to impart information about the disability and about caregiving. This course has been especially beneficial for parents who do not reside in Mumbai, but in its suburbs and beyond. In the end, Vibha hopes to create families of professional caregivers around the country who will train others.

Vibha and her colleagues at Ummeed are also reaching out to academic institutions, media outlets, and citizen organizations (COs) to share their research and approach. Professionals from Ummeed regularly make presentations at national and international conferences, workshops, and seminars to share their latest findings about the newest therapies and approaches to care. They also disseminate information in schools, to COs such as 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 Shapurji Billimoria Foundation), and runs preconference workshops and healthcare training modules. A resource directory for parents of developmentally disabled children all over India is being compiled to help families find the best care for their children wherever they live. This resource was produced for the Mumbai area by Ummeed in 2006.

Thus far, Vibha’s 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 works with other COs serving 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. Because the effect of therapy in a classroom is limited, customized behavioral programs are designed to suit the student’s pace of learning and special needs. At the end of the course, 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 United States, Vibha has begun a model playschool for children (2 to 5 years) with serious disabilities to give them the opportunity to socially interact with each other. She hopes to expand the model to reach children under 2 and to 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 8 years old when her grandfather, a doctor, passed away, but she grew up listening to stories of his legendary care and kindness toward patients. Those stories were the first sources of inspiration for Vibha. At 17, Vibha 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 United States with her husband years later, Vibha began studying childhood development and received a fellowship to work at Boston Children’s Hospital. Her experience furthered her deep resolve to return to India to bring world-class care to children.

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 there. When bureaucratic hurdles became insurmountable, Vibha formed a team of colleagues and co-workers 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.