Community based rehabilitation for children with disabilities in North East India

The CBR worker showing the parents how Gracefully´s development can be supported

When our Community Based Rehabilitation Worker found three year-old Gracefully in a small village of Meghalaya, North East India, Gracefully was lying alone in a corner, without social contacts and unable to move. Her parents, having six other children, had no idea how to deal with their youngest child. The rehabilitation worker was informed that Gracefully started having epileptic spasms one week after birth. Since the family was told by a doctor months later that their daughter had a disabillity and that there is nothing he could do, they lost hope for they felt excluded, they had no assistance and they did not see any chance to be supported.

Gracefully is no exception. She has experienced what the majority of 10% of the world’s population – those living with a disability – are experiencing. Currently, only 2% of persons with disabilities in developing countries have access to rehabilitation and adequate basic services. Luckily, Gracefully was discovered.

LIGHT FOR THE WORLD supports seven "Community Based Rehabilitation"-Programmes (CBR) in North Eastern India (in cooperation with the Indian CBR Forum), serving 800 children with disabilities. The project builds on the experience of the CBR Forum working on 87 projects all over India transferring the know-how developed over the last 10 years to North East India, a region so far highly neglected by governmental and non-governmental stakeholders.

Gracefully can sit on her own! And she is happy!

Through the program interventions a disability-knowledgeable doctor was able to make the appropriate diagnoses for young Gracefully: Cerebral Palsy and Microcephaly. The CBR worker showed the parents at his regular visits how Gracefully´s development can be supported, if the family starts communicating and exercising with her. Today, whenever the CBR worker visits the family, he finds the girl outside, carried piggy-back by other children. She is now able to sit by herself, to crawl and the family is hopeful that she might even attend school in the future.

Simultaneously, the CBR team made efforts to educate the village on disability issues and to mobilize local resources in the area of health and education, by training teachers and health staff on community level as well as by establishing referral systems to educational and health services. Also, a self-help group to demand human rights was established. Some change of mind set of the village people has been noticed by Gracefully´s mother: "In earlier times comments like 'Look what a strange family this is, look what kind of strange baby was born by this mother' were regularly made, but now I can see a change even in attitude. Today relatives and village members start noticing Gracefully as just another, young, lovely girl". All these interventions have helped to trigger of a more positive attitude towards persons with disabilities.

For LIGHT FOR THE WORLD the CBR approach is a very promising and functional strategy, when working in rural and underserved areas. The project activities are designed in line with the CBR Guidelines of the World Health Organisation (WHO), which are currently under review. www.who.int/disabilities/cbr/en/