Best Practices in the Socio-economic Rehabilitation of Persons Affected by Leprosy and Other Marginalised People in Their Communities: Findings from Nine Evaluations in Bangladesh, India and Africa

This paper presents an overview of findings from the formal evaluation of 9 socio-economic rehabilitation programmes (SER), in 4 countries in Africa, in Bangladesh and in India from 2002-2005. Bringing together the recommendations resulted in a description of best practices in the implementation of socio-economic rehabilitation programmes, derived from actual experiences in different contexts. All the 9 programmes focused on supporting individual leprosy-affected beneficiaries or their families. Four projects also supported other marginalised clients. The usual interventions were micro-credit, housing and sponsoring of education for the children. The recommendations touched upon each of the five steps in individual rehabilitation: Selection of clients, needs assessment, choosing an intervention, monitoring / follow--up of clients during rehabilitation, and separation at the end of the rehabilitation process. The evaluators also suggested ways in which participation of the client in their own rehabilitation might be boosted, made recommendations for the organisational structure of programmes, on maximising community involvement and emphasised the importance of information systems and of investing in the programme staff. A number of recommendations were specific to the types of interventions implemented i.e, housing, education or micro-credit. Evidence of the impact of SER on the quality of life of clients is limited, but suggests increased self-esteem and increased respect/status in the family and community. GUEST EDITORIAL Asia Pacific Disability Rehabilitation Journal 4 Vol. 19 No. 1 2008 INTRODUCTION Working to improve the quality of life of leprosy-affected persons involves both medical and socio-economic interventions. During the time when isolation was necessary, the socioeconomic interventions were focused on improving the quality of life in so-called leprosy villages, by providing adequate housing, water and sanitation, food production and income generation, as well as education for the children of leprosy-affected parents. The Leprosy Mission (TLM) has been implementing socio-economic interventions ever since it was founded in 1874. A better understanding of the causes of ulceration was gained in the 1950s and this led to the concept of self-care and the introduction of modern occupational therapy, helping clients to carry out activities in such a way, that damage to the hands and feet would be avoided (1). Now that there is a consensus that leprosy-affected persons can remain integrated in their communities, interventions to meet basic needs aim at helping those who are marginalised because of leprosy-related disability, while at the same time, helping them to protect their hands and feet. As a result, persons with leprosy-related disability are better appreciated as members of their families and communities, since they become an asset rather than a burden. In this way, integration becomes a more feasible and realistic option. At the same time, many leprosy settlements continue to exist and receive support (2,3). Many projects of socio-economic rehabilitation (SER) began small. They relied on very few workers who were personally involved with the clients and often arranged things rather informally. As success was achieved with a few clients, the desire to scale up the activity was felt by the staff, by the management or by the donors. In the late 1990s, TLM took a strategic decision to give more importance to SER activities and scale up this type of work in line with discussions among professsionals involved in leprosy at the international level (4). Scaling up meant involving more staff and so it became necessary to develop written policies and protocols (5,6). This paper presents an overview of findings from the formal evaluation of nine socio-economic rehabilitation projects in four countries in Africa, in Bangladesh and in India. Projects were in different stages of development and were implemented in different cultural contexts. Naturally, a number of recommendations were specific to the types of interventions implemented such