Madhavi Suneel Tambay
IndiaFellow since 1989

Madhavi, one of India's first speech therapists, is setting out to develop simple, easily transmitted methods of communication for the millions of hitherto unserved poor Indians who cannot speak or communicate with others normally, e.g., because they are cerebral palsy victims.

#Communication#Spastic#Victim#The Victim#Paradigm shift#Cerebral palsy#Palsy#Training

The Person

Madhavi's empathy for communication disability has a personal basis to it: she has two brothers who stammered. Partly as a result, she decided to study audiology and speech therapy at Bombay University. She received her B.Sc. in the field becoming one of the earliest batches of speech therapists trained in the country. After a stretch of private practice from 1975 - 1981, Madhavi moved to Calcutta and joined the Spastic Society staff. She is married and has two children.

The New Idea

Building her methodology from 40 of her own cases, Madhavi is developing a simple approach to teaching cerebral palsy victims and their families how to use a variety of means of expression other than speech, most utilizing naturally occurring situations in everyday life, to foster more effective communication. Until now the professional antidote to speechlessness has been speech therapy, a process requiring a highly trained professional to work intensively with the person having trouble speaking. Over the last decade several of the leading theorists and writers in the field on the one hand and Madhavi observing the limitations of this approach on the other, were both moving towards a new paradigm. It stresses the need to develop two-way communication through whatever means works, first within the family and then in the broader community. Madhavi's professional transformation was catalyzed when she recognized that the parents of the cerebral palsy children with whom she was working at the Spastic Society of Eastern India were not able to absorb the training given them and that therefore their children were not getting the home care they needed. She started inviting these families to observe how she worked, to participate in designing the remedial program for their child, and then to carry it out at home. The strategy worked remarkably well, both in getting the job done in these homes and in educating Madhavi. Her work now begins with the objective of engaging the family of the victim in a family-wide remedial effort. Madhavi's second major goal is to find a way of getting effective help to the vast majority of such victims, who have no access, and can never have access to the tiny, very expensive capacity of the few urban-based, professional institutions pursuing the old paradigm. She estimates, for example, that only 3000 of India's over 3,000,000 cerebral palsy victims now are getting any remedial help. Madhavi consequently is trying to develop both simple means of communications and simple ways of training the victims and their families in their use. Recognizing that she and the country's few other professionals could never reach even a modest portion of the families needing help directly, she is designing her approach to be used by social workers after only very limited training. She is currently working to develop a simple manual to help them be effective. This part of Madhavi's work is designed to bring treatment to the victims, not vice versa. To the degree that she can demonstrate such an effective and economic community and homeªbased approach, she will have created a model that can help make the fields new communications-through-all-means paradigm practically useful.

The Problem

Despite the large number of victims of cerebral palsy, stroke, mental illness, and other afflictions who have lost the power of communication, there are no programs that offer effective help to more than a token few of these people. There are three regional spastic societies that do offer small, dedicated islands of relief for cerebral palsy victims. Other afflictions typically have similar narrowly professional groups. However, they can serve only a very few, mainly urban clients whereas the majority of the handicapped population lives in the rural interiors. Even those people who are served in these urban centers are often not served effectively - as Madhavi found even at the highly respected, energetic Spastic Society of Eastern India.

The Strategy

Madhavi plans first to field-test her approach and its manual on five afflicted children and their families. At first the child and the primary caregiver will be videotaped in a free-play situation in order to give an indication of communications skills already present. She will then apply her approach for four months, at the end of which the main players will be videotaped again to measure the change in their families' communications skills. She will then give the three community workers and three special educators of the Spastic Society of Eastern India three days training in the use of the approach. These six workers will each use the approach with three cerebral palsied children and their families for six months, at the end of which each worker will submit a report on strengths and weaknesses of the approach. After another round of discussion and modifications, Madhavi will prepare a set of materials a larger group of social workers and their client families can use. Once these materials are translated and printed in Hindi, Bengali, and English, she will start the first significant scale use of the approach with an additional several days training for the social workers who come to the Spastic Society's regular training programs. They will, once thus armed with Madhavi's techniques for assessing the communicative skills of cerebral palsy children and for then helping them and their families learn how to communicate, go back to the rural districts where they are working and apply the approach. As they do, Madhavi will follow up with quarterly follow-up visits to monitor their progress and help. Especially as more and more workers go through training and get started, Madhavi will have to shift almost half her time to this work in the villages. Madhavi expects to train at least 15 such social workers over the coming year, perhaps 30. Each worker can in turn help 15-20 victims and their families each week. Thus, even where there are no existing services, around 300 CP victims and their families can get help twice a month from trained workers who will be easily accessible and speak their clients' own language. Once it is used successfully in Eastern India, Madhavi's approach, manual, and training formula can be used by other organizations dealing with the handicapped after suitable modifications in terms of language and focus. Madhavi is well positioned to help it spread. She is respected in the field and plans to use her national and international ties to promote what she is developing. She corresponds with the leading theorists in the field and is playing a lead role in the International Society for Augmentive and Alternative Communication.