Full project title:
Building responses in diverse global enabling settings (BRIDGES): Brazilian and Indonesian community programmes sharing experiences to generate knowledge towards inclusive CBR

Project coordination
Disability Studies Group in the Netherlands

Partners
NHR Brasil
NLR Indonesia
Movement for Reintegration of Persons Affected by Hansen's Disease 
Forum Disabilitas Cirebon FKDC 
Federal University of Ceará 
University of Indonesia 

Aim: This project has assessed feasible and effective ways to achieve sustainability in CBR initiatives of persons affected by leprosy in Indonesia and Brazil. 

Final project summary
Community based rehabilitation (CBR) programmes and projects are now finding more supporters in the field of leprosy. This responds especially to the positive impact that CBR initiatives seem to have regarding disability, although this is still not well documented. Considering that leprosy is no longer seen as solely an infectious disease but as a medical-social problem that causes impairments, the chances that CBR could offer some sort of hope for improving the life of people affected by the disease increases greatly especially in countries with a high incidence of leprosy cases such as Brazil and Indonesia. In view of this, a few leprosy inclusive CBR initiatives were thought to be taking place in Indonesia and Brazil as implemented by small disabled people organisations (DPOs), self help groups (SHG) and self care groups (SCG).

However, sustainability is difficult to reach. Only a few SCG, SHG and DPOs (not necessarily CBR) are proving successful in sustaining their work while others discontinue. Leprosy CBR initiatives are still fragile; inclusive (disability and leprosy) CBR experiences are partly weak and infrequent; thus how those initiatives could be sustainable and become more empowered is one of the main questions that people working in the field of disability and HD in Brazil and Indonesia would like to understand in order to inform future interventions. In view of this, the current project tried to answer the following main research question:

What lessons regarding sustainability can small DPOs, SGH and SCG leprosy and leprosy-inclusive initiatives in Indonesia and Brazil learn from other groups in these countries in order to become more sustainable?

It aimed to:

1. explore general CBR initiatives existent in the countries selected looking at the specific topic of sustainability
2. analyse the lessons learned from those initiatives regarding sustainability
3. propose a kit of tools that can help CBR initiatives (especially small inclusive (leprosy-disability) DPOs or those that are in process of strengthening) to explore, analyse and build on the component of sustainability.

The results show that, on the one hand, some DPOs, SCG and SHG have evolved into spaces that could have essential elements of an informal CBR programme or network; on the other, there is still much to learn from community based approaches in other areas besides disability and leprosy (HIV, diabetes, sexual workers) that are more sustainable. Insufficient spaces exist for sharing knowledge and developing an interactive learning process between all these initiatives within countries and between countries that can strengthen the activities of groups involved in leprosy and disability. The experiences are different as the contexts. Thus, knowledge has been gained first, by looking at what is happening within each country and second, by learning between countries. The learning interaction needed to succeed in such a venture was exercised by people affected by leprosy themselves, at least in Indonesia. Some work is still in progress regarding this aspect in Brazil.

Impact

The teams organised and participated in events within their own countries regarding CBR, human rights, sustainability, tropical diseases and stigma.