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Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

Community Mobilisation in a CBR Programme in a Rural Area of Sri Lanka

HIGASHIDA, M
2014

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Purpose: This article examines community mobilisation in a model administrative division of the national community-based rehabilitation (CBR) programme in Sri Lanka.

 

Method: After comprehensively analysing local human resources related to the CBR programme at the study site, the focus of the study was on volunteers (n = 17), youth club members (n = 7), and local government officers from multiplesectors (n = 33). A semi-structured interview, focus group discussion and case information provided data, which was collected through social work practice in line with a previously developed one-year action plan. Narrative data was analysed using a qualitative procedure.

 

Results: The findings suggest that the local supporters, including people with disability, made a positive contribution to the CBR programme, and felt satisfied with the activities. Although the local resources and opportunities for people with disability are limited, the analysis points to the importance of coordination, attitudes, and mutual support rituals by villagers, in promoting community mobilisation.

 

Conclusions: Although it is an exploratory study with a limited sample of stakeholders at one study site in Sri Lanka, the study contributes to a growing body of literature that suggests the significance of community mobilisation in CBR. Future studies could explore some of the issues identified here, such as promotion of community-based inclusive development (CBID). However, since a limited sample of stakeholders was involved, findings can be generalised only to a similar context and setting.

A Transect Walk to Establish Opportunities and Challenges for Youth with Disabilities in Winterveldt, South Africa

LORENZO, T
MOTAU, J
2014

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Winterveldt was one of the 9 sites included in a national study to determine the livelihood strategies of youth with disabilities, undertaken by the Occupational Therapy Departments of 6 Universities in South Africa. Community-based rehabilitation (CBR) programmes were initiated in Winterveldt in the 1990s by non-governmental organisations and the Occupational Therapy Department at the University of Limpopo - Medical University of South Africa (MEDUNSA).

 

Purpose: This paper describes the use of a Transect Walk to identify aspects of context that contribute to the vulnerability of youth with disabilities with regard to their livelihood strategies.

 

Method: Transect Walk was employed as a participatory rapid-appraisal tool to gather data. Convenience sampling was used to identify 11 participants, including three youth with disabilities. Field notes and observations were analysed deductively for themes related to the 5 categories of livelihood assets.

 

Results: The findings describe the natural and built environment, the access to health, educational and financial services, and the social attitudes of people in this community towards youth with disabilities. The discussion uses the 5 CBR components as a framework to explore strategies for enhancing the assets of youth with disabilities, namely, empowerment, social, health, education, and livelihood.

 

Conclusions: There is significant development that could be maximised if youth with disabilities were aware of their rights and were able to access services and resources. The implication for local government is to create an inclusive environment in which youth with disabilities are able to participate in mainstream youth development opportunities.

Community-Based Rehabilitation Programme Evaluations: Lessons Learned in the Field

GRANDISSON, M
THIBEAULT, R
HEBERT, M
TEMPLETON, A
2014

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Purpose: There is limited guidance available on the best ways to evaluate community-based rehabilitation (CBR) programmes. In this paper, we share lessons learned on suitable evaluation strategies for CBR through a South African programme evaluation.

 

Method: An empowerment evaluation of an early childhood development programme was conducted in April 2012. At the end of the field visit, parents, staff members and managers provided feedback anonymously about what they liked and disliked about the evaluation, and offered their suggestions. The principal investigator documented the evaluation process in a journal, recording the barriers and facilitators encountered, the participation of the 3 groups and the effectiveness of the different strategies used. The data analysis followed the principles of grounded theory.

 

Results: The main lessons learned about CBR programme evaluation are associated with strategies to: 1) foster active participation, 2) collect accurate and credible information, 3) build local capacity, and 4) foster sustainable partnerships. Time spent to promote a positive learning spirit and the use of participatory tools with all groups appeared critical to active engagement in evaluation activities. Sharing tools and experiences in context built more local capacity than was achieved through a formal workshop. The findings also highlight that a flexible model, multiple data collection methods, and involvement of all relevant stakeholders maximise the information gathered. Sensitivity to the impact of culture and to the reactions generated by the evaluation, along with ongoing clarifications with local partners, emerged as core components of sustainable partnerships.

 

Conclusion: CBR evaluators must use a variety of strategies to facilitate active engagement and build local capacity through the evaluation process. Many of the strategies identified relate to the way in which evaluators interact with local stakeholders to gain their trust, understand their perspectives, facilitate their contribution, and transfer knowledge. Further research is needed on how toconduct empowering CBR programme evaluations.

Empowerment in Community-based Rehabilitation and Disability-inclusive Development

KUIPERS, P
2014

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Purpose: This paper seeks to contribute to discussion on the understanding and measurement of empowerment of people with disabilities in developing countries. A novel, text analysis approach was used to depict the way in which empowerment is characterised in conventional measures in Western settings. This was then compared with depictions and analyses of the way in which empowerment is characterised in documents that have more relevance to developing countries.

 

Method: First, computer-based content and concept analysis was applied to three key empowerment measures. This was compared with analysis of responses to a recent online survey of empowerment conducted by the United NationsDepartment of Economic and Social Affairs (UN-DESA). Visual representations in the form of “word clouds” were generated to depict key concepts within each data source. Second, to provide specific detail regarding how empowerment has been described in documents which relate to developing countries, more detailed computer-assisted lexical analysis was performed on the text of responses to the UN-DESA survey, and on the text of the Empowerment component of the CBR Guidelines.

 

Results: Initial “word clouds” illustrated considerable discrepancy between concepts inherent in the three most relevant empowerment measures when compared with responses to the UN-DESA survey relating to empowerment in a development context. Subsequent lexical analysis depicted greater specificity and ranked the concepts associated with empowerment in key disability and development-related documents.

 

Conclusions: Conventional Western measures of individual empowerment may not adequately encompass the broader social, economic and community orientation of empowerment as described in documents from disability and development circles. Further research is required to substantiate these novel and speculative indications.

Caregiver’s Involvement in Early Intervention for Children with Communication Disorders

MALAR, G
SREEDEVI, N
SURESH, C
2014

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Purpose: Since very young people benefit from early identification of communication disorders, the primary caregivers (generally the parents) become the fulcrum of the intervention services provided. This article deals with the measures taken to empower caregivers, as part of the early intervention services offered at the All India Institute of Speech & Hearing (AIISH) in Mysore city in India, and the impact this has had on their wards’ progress.

 

Method: A survey was conducted among the caregivers of 205 clients who availed of early intervention services. Five-pronged data were collected, pertaining to family demographic details, early intervention measures for their children with communication disorders, type and intensity of caregiver empowerment measures provided along with early intervention services, resultant caregiver participation in the education and training of their wards, and the consequent development in children with communication disorders. The mutual influences among these factors were analysed using simple correlation measures.

 

Results: The findings revealed that informal, but continuous and consistent efforts to empower parents, such as counselling and guidance, had a better impact. Empowered caregivers in turn contributed towards the education and training of their children with communication disorders, resulting in improved development of their wards’ communication skills and academic achievements.

 

Conclusion: The evidence adds strength to recommendations that caregiver empowerment and participation need to become integral components of early intervention services for young children with special needs.

Training CBR Personnel in South Africa to contribute to the Empowerment of Persons with Disabilities

RULE, S
2013

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Purpose: Recent conceptualisations of community based rehabilitation include empowerment of persons with disabilities as a key activity. This article reports on a study which explored the training of mid-level CBR workers in South Africa, with a specific focus on the ability of the course participants to address the oppression and empowerment of persons with disabilities.

 

Method: Over a three-year period, one cycle of action research was conducted in a non-government organisation that conducts mid-level CBR training in South Africa. Data collection methods included in-depth interviews with staff, students and past graduates of the course, document analysis, participatory rural appraisal techniques and two focus group discussions with the students’ clients.

 

Results: Personnel, who had been trained in CBR before the year 2003, were found to have some difficulty in explaining the social model of disability and the oppression of persons with disabilities at a cultural and structural level. It was noted that after changes were implemented in the CBR course, the students had an orientation to working with, rather than for, persons with disabilities. They began to understand the complexities of empowerment and also engaged in social action to address the oppression of persons with disabilities.

 

Conclusions: The CBR Guidelines require a new skill-mix in mid-level CBR personnel. This study illustrates a possible training approach which can contribute to the development of these skills.

The Community Based Rehabilitation Programme of the University of the Philippines Manila, College of Allied Medical Professions

MAGALLONA, M L M
DATANGEL, J P
2012

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Purpose: This paper reports the process of development of a CBR programme by UP Manila College of Allied Medical Professions, and its impact on the stakeholders: persons with disabilities, students and alumni, CBR workers, local leaders and the agencies involved in the programme.

 

Method: The impact of the programme was assessed through interviews, questionnaires, focus group discussions and review of secondary data and records.

 

Results: The programme results show that the condition of persons with disabilities has improved and there has been a remarkable change in their knowledge, attitudes and skills. The positive attitudes, skills and values of students were enhanced, and the CBR programme was a “character builder” for them as rehabilitation professionals. The CBR workers who participated in the programme learnt to appreciate the potential of persons with disabilities and to accept their limitations. Another key result was the pledge by local leaders to sustain CBR in their own villages.

 

Conclusions: The students and alumni reported that the CBR programme should be replicated for nation-building. The different stakeholders reported that it helped improve the quality of life of people with disabilities and contributed to community development.

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