The promotion of inclusive development entails the full participation of everyone, including people with disabilities, in decision making processes. In order to exert some degree of influence, it is crucial that people with disabilities are included in research processes, and that they are able to collect, analyse and disseminate relevant data. Emancipatory disability research (EDR) allows people with disabilities and disability organisations to produce knowledge about their own lives and the social, economic and cultural barriers that impede their effective participation in society. In EDR, people with disabilities act as co-researchers to progressively gain control over the identification of research questions and the elaboration of research methodology and data collection, analysis and dissemination. This chapter presents EDR in practice, by showcasing first-hand EDR experiences through case studies from different countries. These demonstrate how EDR can produce new knowledge about disability, foster empowerment and influence decision-making processes.

Disability, CBR and Inclusive Development aims to enhance knowledge in the field of disability and inclusive development, addressing the needs of practitioners, policy makers, DPOs and the scientific community.

Today there are Community-based Rehabilitation (CBR) programmes in a large number of countries. In many countries, the CBR approach is a part of the national rehabilitation services. However, there is a lack of reliable data about persons with disabilities who benefit from CBR and the kind of benefits they receive. This article reviews the disability data collection systems and presents some case studies to understand the influence of operational factors on data collection in the CBR programmes. The review shows that most CBR programmes use a variable number of broad functional categories to collect information about persons with disabilities, combined occasionally with more specific diagnostic categories. This categorisation is influenced by local contexts and operational factors, including the limitations of human and material resources available for its implementation, making it difficult to have comparable CBR data. Therefore, any strategies to strengthen the data collection in CBR programmes must take these operational factors into account.

One billion people or 15 percent of the world population live with some form of disability, or significant difficulty in functioning in their everyday lives (WHO & World Bank 2011). Improving quality of life for people with disability is of particular concern in low and middle income countries which are home to nearly 80 percent of people with some form of disability, the vast majority of whom live in poverty (WHO & World Bank 2011). This situation reflects a strong enduring link between disability and poverty whereby more people living in poverty have some form of disability due to factors such as inadequate housing, sanitation, nutrition and unsafe work conditions, as well as widespread barriers to services including health and education; and more people with some form of disability live in poverty due to factors such as unemployment and expenses required to manage their disability. Across all countries and income levels, people with disabilities have lower health status than the rest of the population (WHO 2014), and frequently face discrimination in their everyday lives (WHO & World Bank 2011).

There are some barriers that persons with different kinds of impairments commonly face, and there are also some impairment-specific barriers. Disaggregated data are needed to assess the impact of different CBR activities on different groups of persons with disabilities.Purpose: This article assesses the impact of CBR on key variables linked to the five domains of the CBR Matrix, on 4 groups of persons with disabilities - visual, hearing and speech, physical and intellectual disabilities.Method: A questionnaire survey was carried out involving 2,332 persons with disabilities, in a random stratified sample of villages covered by a CBR programme, in 9 sub-districts of Karnataka state (India) and in a control area. Data were collected pertaining to different activities in the lives of persons with disabilities. Through a participatory approach involving CBR workers and DPO representatives, some key indicators were identified to assess the impact of CBR on the five domains of the CBR Matrix - health, education, livelihood, social participation and empowerment.Results: Among all the 4 groups of persons with disabilities, the CBR programme was found to have had a positive impact across all the five domains of the CBR Matrix. However, there was no uniform impact on different variables among the 4 groups; different groups of persons with disabilities benefited differently from different activities. Persons with physical disabilities seemed to benefit in more areas compared to persons in the other groups.Conclusions: CBR programmes can have a positive impact on persons with visual, hearing and speech, physical and intellectual disabilities. Disaggregated data can help CBR programmes to identify groups of persons who benefit less from specific activities and adopt strategies to improve their participation.

Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little information about their role in this regard. Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it. Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet tables for analysis. Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role. Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.

Background Community-based rehabilitation (CBR) programmes have been described as highly effective means of promoting the rights and opportunities of persons with disabilities (PwD). Although CBR is often the main way in which PwD in low-income and middle-income countries access rehabilitation services, there is little literature providing rigorous evaluation of their impact on people's well-being.Methods Data were collected in the Mandya and Ramanagar districts (Karnataka state, India), between December 2009 and May 2010. In total 2540 PwD were interviewed using stratified random sampling: 1919 CBR beneficiaries (who joined the programme between 1997 and 2009) and 621 persons who were living in villages not covered by the programme. We controlled for the systematic differences between people joining and not joining the programme using the propensity score matching method controlling for covariates at individual and village level. We evaluated the impact of the programme on the subgroups of PwD who are disadvantaged on the dimensions of interest: access to pensions, use of aid appliances, access to paid jobs and improvement in personal-practical autonomy after 4 and 7 years of joining the CBR.Results We observed a positive and significant impact of the programme on access to services, rights and opportunities of PwD. The results indicate that compared with the control group access to pensions and allowances, aid appliances, access to paid jobs and personal-practical autonomy increased by 29.7%, 9.4%, 12.3% and 36.2%, respectively, after 7 years.Conclusions The CBR programme analysed has a positive impact on access to services and the well-being of PwD who are particularly deprived on outcomes of interest.

PURPOSE:In this paper, we measure the effectiveness of Community-Based Rehabilitation (CBR) programmes in promoting the well-being of people with disabilities and removing the barriers to their participation in family and community decision-making processes.METHOD:To evaluate the impact of the CBR programme, we use data from a large-scale control study in Karnataka, India. Propensity score matching is used to evaluate the impacts on disabled persons after 2, 4 and 7 years of entering the CBR. The theoretical framework for the analysis is based on the CBR guidelines, which are combined with the International Classification of Functionings (ICF), the United Nations Convention on the Rights of People with Disabilities (UN CRPD) and Amartya Sen's capability approach.RESULTS:CBR has a positive impact on the well-being of persons with disabilities participating in the programme and particularly on their participation within the family and the society at large.CONCLUSIONS:CBR programmes have a multidimensional and positive impact on individual and collective capabilities; on individual, agency and social empowerment. Implications for Rehabilitation Community-Based Rehabilitation (CBR) can make a lasting difference in the life of persons with disabilities. CBR improves participation and inclusion of persons with disabilities in the family and in the community.

Over the last few decades, there has been a growth in community-based rehabilitation (CBR) programmes in different parts of the world. These programmes are regarded as one way of strengthening the implementation of the UN Convention on Rights of Persons with disabilities. CBR programmes and Organisations of persons with disabilities (DPOs) have developed parallel to one another and are interlinked in different ways. CBR can play a role in the setting up and strengthening of DPOs. On the other hand, DPOs can also initiate and run CBR programmes. Both share similar objectives in terms of respect for human rights of persons with disabilities. This article looks at the historical evolution of connections between CBR and DPOs, analyses some of the areas where their activities are interlinked, and presents 2 case studies - one from Santarem metropolitan area in Brazil and the other from Bidar district in India - to demonstrate those links.

Purpose: The aim of this research was to understand the barriers faced by persons with disabilities in their daily lives and the role of CBR projects in overcoming them. Method: A group of persons with disabilities involved in CBR activities was identified and trained in participatory research methodologies. Research was carried out, with support from a scientific advisory group, through sharing of life stories in residential meetings focusing on specific themes. These meetings were attended by 368 persons with disabilities. Results: The barriers identified ranged from isolation, neglect, abuse and violence to lack of access to social, health, education and livelihood opportunities. People faced their first barriers in their own families. Families also played an important role in overcoming some barriers at the individual level. CBR projects assisted people in overcoming barriers mainly by providing information, by facilitating access to existing support and by helping persons in communities to take collective action against the barriers. The research also stimulated DPOs and CBR projects to identify some gaps in tackling the barriers and to start action to overcome them. Conclusions: CBR projects can play a role in overcoming some barriers faced by persons with disabilities. Emancipatory research yields rich data, facilitates ownership and possibly future sustainability.

Introduction: In 2011, the national leprosy control programme in Mozambique decided to promote the setting up of self-care groups (SCGs) for prevention and care of disabilities. Objectives: To present an overview of the national SCG strategy and to understand the perceptions of people with leprosy regarding the benefits and challenges of participating in the SCGs in Mozambique. Methods: Semi-structured group interviews were carried out with 22 SCGs involving 299 leprosy affected people in Nampula and Manica provinces. Results: SCGs are involved in different activities and do not limit themselves to activities related to disability care. The majority of respondents expressed satisfaction about their participation in SCGs. Apart from perceived benefits in relation to their disabilities, the majority of SCG members also reported benefits in social participation. Lack of training, insufficient resources for income generation and long distances were the major challenges for SCGs, especially in the Manica province. Conclusions: People affected with leprosy perceive SCGs as useful in self-care for prevention of disabilities and social participation.

Objectives: To assess the quality of routine data collection on relapses in leprosy programmes in six countries.Design: Through a questionnaire for project managers.Results: The number of reported relapse cases did not correlate with number of new cases in the individual projects. Even where available, skin smears were not always used for diagnosis of MB cases and relapses. The diagnosis of relapses in the participating projects was exclusively on clinical basis - in 91.8% on the basis of new lesions.Conclusion: Criteria for identification of relapses were not known or not applied in uniform manner in the projects involved in the research.

CBR Matrix, proposed in the CBR Guidelines, provides a systematic framework for organising and analysing CBR activities. A sample of experienced CBR workers, active at community level in 7 countries, were asked for information about different activities they actually carry out, so as to understand the applicability of CBR Matrix framework in the field. The CBR workers were also asked to identify their most pressing learning needs in different areas of CBR Matrix. This study shows that CBR Matrix can be a useful framework to understand field-level activities in CBR projects. The study has identified a number of priority learning needs, in terms of different domains of CBR Matrix, and in terms of different disabilities. It also shows that globally, areas related to advocacy, lobbying, legal protection and rights-based approach, are the most important learning needs identified by CBR workers.