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Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

I Am EmployAble

BAART, Judith
MAARSE, Anneke
September 2017

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I am EmployAble walks the reader through the process of vocational training – from enrolment to training to employment – and provides tips based on experience, anecdotes and tools to inspire and support those working with and for disability inclusive technical and vocational training institutes.

The specific aim of this programme was to contribute to quality vocational training for young people with disabilities in Kenya, Rwanda and Ethiopia and create lasting linkages between technical and vocational training institutes and the labour market, thus facilitating decent and sustainable wage or selfemployment for young people with disabilities. This meant not just targeting the young people with disabilities themselves but also local training institutes and private sector actors, in order to work for systemic change.

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

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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.

The capacity of community-based participatory research in relation to disability and the SDGs

GREENWOOD, Margo
2017

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The 2030 Agenda pledges to foster shared responsibility, recognizes all as crucial enablers of sustainable development, and calls for the mobilization of all available resources. It also commits to multi-stakeholder partnerships and pledges to be open, inclusive, participatory and transparent in its follow-up and review. Community-based participatory research (CBPR) equitably involves community members, organizational representatives and researchers, enabling them to share power and resources through drawing on the unique strengths that each partner brings. It aims to integrate any increased knowledge and understanding into action, policy and social change to improve the health and quality of life of community members. CBPR involves recruiting community or peer researchers, involving them in planning and offering them training to undertake interviews and observations in their context. They are also part of the analysis and dissemination process, and continue to work with local partners on advocacy plans and events after projects and research have finished. People with disabilities are actively part of the research process throughout. Drawing on relevant literature and current CBPR disability research in East and West Africa, this paper puts forward CBPR as a methodology that can enable community members to identify key barriers to achieving the SDGs, and inform how policy and programmes can be altered to best meet the needs of people with disabilities. It demonstrates CBPR in practice and discusses the successes and complexities of implementing this approach in relation to the SDGs. The paper also highlights findings such as the high level of support needed for community research teams as they collect data and formally disseminate it, the honest raw data from peer to peer interaction, a deep level of local ownership at advocacy level, emerging issues surrounding meaningfully involving community researchers in analysis, and power differentials. A key conclusion is that to join partners with diverse expertise requires much planning, diplomacy, and critical, reflexive thought, while emphasising the necessity of generating local ownership of findings and the translation of knowledge into a catalyst for disability-related policy change.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

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.

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

Discussion papers on the theme of the high-level political forum on sustainable development, submitted by major groups and other stakeholders

UNITED NATIONS ECONOMIC AND SOCIAL COUNCIL
May 2015

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A compendium of papers from various stakeholders setting out “established and maintained effective coordination mechanisms” for the high-level discussions on sustainable development and the post-2015 development agenda

High-level political forum on sustainable development, Convened under the auspices of the Economic and Social Council, 26 June-8 July 2015

E/HLPF/2015/2

The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

 

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

 

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

 

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

Education transition for children with disabilities in Armenia

BRIDGE OF HOPE
2015

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The  research report from Armenia looks in depth at the challenges and promising practices relating to education transition in the country - from the perspectives of teachers, parents, children and young people, specialist staff and other key stakeholders. It looks at learners transitioning from kindergarten to primary education, and then to secondary and higher/vocational education, as well as to other learning opportunities and into employment

Agenda 2030 : sustainable development goals (SDGs)

INTERNATIONAL DISABILITY ALLIANCE (IDA)
INTERNATIONAL DISABILITY AND DEVELOPMENT CONSORTIUM (IDDC)
2015

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An easy read introduction to the 17 Sustainable Development Goals (SDGs)​ which were adopted in September 2015 at the United Nations General Assembly

Exploring a Model of Effectual Learning for a Student Speech Pathology Placement at a Community-Based Rehabilitation (CBR) Centre in Malaysia

VAN DORT, S
WILSON, L
COYLE, J
2014

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Purpose: Speech-language pathologists in Malaysia typically do not work within CBR. Therefore, exploring the use of services through a non-traditional student placement was a crucial first step in understanding how to develop capacity for such services. It was also important to develop an understanding of the ways in which the implementation of this student placement influenced learning in the context of a Malaysian CBR programme.

 

Method: An action research study was designed to implement and evaluate student speech-language pathology (SLP) placement within a Malaysian community-based rehabilitation (CBR) centre for children with communication disabilities. Data collection involved the learning experiences of key adult stakeholders (students, workers, parents, and the principal research investigator (PI) or lead author).

 

Results: Study findings indicated that all adult learners became better empowered by working together. Workers involved in impairment-focussed rehabilitation activities grew in understanding and skills when supported by relevant professionals.The importance of mentoring as a learning-teaching relationship was demonstrated.

 

Conclusion: While the study has indicated that the setting is beneficial as a student placement, the development of a specialisation in CBR for allied health professionals would be a relevant way forward in the Malaysian context.

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.

How politics and economics intersect : a simple guide to conducting political economy and context analysis

OXFAM
June 2014

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"The intention of this guide is to provide practical guidance on how Oxfam undertakes political economy analysis (PEA) in order to inform operations and programming. It is based on the experience of working with Oxfam Myanmar (and heavily features this experience), initially looking at how PEA could be used to address two areas: 1) ‘How can citizens/civil society get engaged with local planning and budgeting processes?’ and 2) ‘How will the economic opening up of Myanmar affect small-scale farmers?’"

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.

Rapid outcome mapping approach (ROMA) : a guide to policy engagement and policy influence

YOUNG, John
et al
2014

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ROMA (the RAPID Outcome Mapping Approach) is an approach to improve policy engagement processes and in­fluence change. It comprises a suite of tools that any organisation can use at any stage in their policy engagement process to improve how they diagnose the problem, understand the types of impact their work could have on policy-making, set realistic objectives for policy infl­uence, develop a plan to achieve those objectives, monitor and learn from the progress they are making and refl­ect this learning back into their work

Note: The guide is available in pdf and online webpage formats from the links above

Strengthening communities to integrate persons with disabilities in the HIV and AIDS response in Rwanda

DELEU, Marijke
May 2013

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"This document aims to capture some of the key lessons learned from Handicap International’s New Partnership Initiative project in Rwanda, which started in 2008 with the objective to integrate persons with disabilities in HIV and Sexual Violence (SV) prevention efforts and service provision generally. It is the result of qualitative, multi-stakeholder study about how change occurred within the project and how the experience could be modelled for adaptation or replication in Rwanda or other contexts"
SD/LL 08

The sustainability analysis process : the case of physical rehabilitation

BLANCHET, Karl
BOGGS, Dorothy
December 2012

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"This guide describes the Sustainability Analysis Process (SAP), a coordinated planning approach that aims to facilitate the development of a common vision of sustainability among various actors in a system. Specifically, it is a participatory process which outlines how to achieve consensus on a common vision, and how to define sustainability indicators that can be used to monitor progress towards this vision within the context of the national rehabilitation system. Ultimately, the SAP outlined in this guide is a practical tool that can help all actors in a system to understand the various components of sustainability and analyse the concept of sustainability in relation to their own system"

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