The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.
The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The
research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.
CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.
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.
There are social and environmental barriers faced by persons with disabilities which have been reported in literature. In discussing these barriers, attention is yet to be given to the support from families to members with disabilities. This study aimed to examine family support and its impact on the lives of persons with disabilities in Ghana.
This study, although not generalizable, builds up the literature on worker training needs in developing countries, and would be of benefit for speech-language pathologists and worker trainers. This paper aimed to investigate the training needs of Malaysian workers in relation to people with communication disability. The primary aim was to investigate common self-perceived training needs in relation to communication disability and to find how important these needs are to workers. A secondary aim was to explore the relationship between selected worker variables and training needs.
This article describes a Community-Based Participatory Approach (CBPA) for children with intellectual disability in Endosulfan affected areas of Kasaragod district in Kerala state of India. The CBPA strategy evolved from Community Based Rehabilitation (CBR) and was led by Local Self-Government (LSG) members. It involves a four-pronged approach encompassing family, community, service centres and LSG, with a focus on income generation activities and creation of employment opportunities. The CBPA model considers the cultural
uniqueness and limited resources in areas where the unscientific and extensive use of pesticides has led to high prevalence of multiple deformities including intellectual disabilities.
Purpose: This research study aimed to investigate the effectiveness of the services provided by CBR programmes in Jordan.
Method: This was a mixed- methods investigation. A survey was carried out with 47 participants (stakeholders and volunteers) from four CBR centres in Jordan. It comprised 18 questions that collected both qualitative and quantitative data with both closed- and open-ended questions. The quantitative data were analysed using SPSS Version 22.0. Qualitative data were analysed through thematic content analysis and open coding to identify emergent themes.
Results: 40.4% of the participants evaluated the effectiveness of CBR services as low. This mainly stemmed from the lack of efforts to increase the local community’s knowledge about CBR, disability and the role of CBR programmes towards people with disabilities.
Conclusions: A proposal was offered concerning the priorities of CBR programmes in Jordan. Efforts need to be directed at promoting livelihood and empowerment components in order to actualise the principles of CBR, mainly by promoting multispectral collaboration as a way of operation.
Implications: This study was inclusive of all types of disability. Barriers to the effectiveness of services may stem from accessibility issues to the families of persons with disabilities (hard to reach) or from CBR services themselves (hard to access). The culturally specific evaluative tool in this study was of “good” specificity and sensitivity, this evaluative instrument can be transferrable to measure the impact of CBR programmes in other settings.
Recommendations to develop guidelines on community-based rehabilitation (CBR) were made during the International Consultation to Review Community-based Rehabilitation which was held in Helsinki, Finland in 2003. WHO; the International Labour Organization; the United Nations Educational, Scientific and Cultural Organization; and the International Disability and Development Consortium – notably CBM, Handicap International, the Italian Association Amici di Raoul Follereau, Light for the World, the Norwegian Association of Disabled and Sightsavers – have worked closely together to develop the Community-based rehabilitation guidelines. More than 180 individuals and representatives of nearly 300 organizations, mostly from low-income and middle-income countries around the world, have been involved in their development.
The main objectives of these guidelines are:
A. To create awareness among the CBM family (International Office, Member Associations, Regional Offices, Country Offices and partners) on the opportunity savings groups create to attain socio-economic empowerment of a significantly larger number of persons with disabilities particularly among the poorest of the poor.
B. Lobbying mainstream savings group providers and donors to promote the inclusion of persons with disabilities in their programmes as a right as a catalyst of inclusive development.
C. To highlight and illustrate the key steps and procedures that are required to link persons with disabilities through CBR programmes with existing mainstream savings groups and/or promote development of disability specific savings groups.