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Representation and methods of normalisation: Narratives of disability within a South African tertiary institution

DEVAR, Teagan
BOBAT, Shaida
REUBEN, Shanya
July 2020

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Background: The manner in which disability is understood influences how individuals within a society, its institutions, policies and structures are able to accommodate and support people with disabilities (PWD) (Kaplan 2000). Understanding how students with disabilities (SWD) within a higher education context perceive and experience disability as well as how key players, namely, lecturers and disability unit (DU) staff, who influence that experience, is important in further shaping policy and providing a truly inclusive environment for all within HEIs.

 

Objectives: The study aimed to examine the narratives of disability among SWD, lecturers and the DU within a tertiary institution, with a view to better understand their experiences and required initiatives to address the challenges of disability within a higher tertiary institution.

 

Method: The study drew on three theoretical frameworks: social constructionism, feminist disability theory and the Foucauldian perspective. Data for the study were collected through in-depth semi-structured interviews with 12 SWD, seven members of staff from the institution’s DU and five lecturers from within the School of Applied Human Sciences. Data were analysed using thematic analysis.

 

Results: The findings suggested that in spite of both facilitating and positive representations of disability, the dominant representation of disability was perceived as challenging and as a result, disempowering. Students with disabilities were found to adapt, and consequently modify their behaviour by disassociating from their disability in order to fit in.

 

Conclusion: The study highlights the need for creating spaces and engagement within an HEI context that both challenge negative discourses of disability, and at the same time, promote positive representations of disability.

 

 

African Journal of Disability, Vol 9, 2020

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

Gap Analysis: the inclusion of people with disability and older people in humanitarian response

ROBINSON, Alex
MARELLA, Manjula
LOGAM, Lana
July 2020

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To build the evidence base on inclusion, and inform our priorities for innovation, the Elrha Humanitarian Innovation Fund (HIF) commissioned a Gap Analysis on the Inclusion of People with Disability and Older People in Humanitarian Response. This is the first of two reports from the Gap Analysis and summarises findings from the literature review components of this work. The Gap Analysis has been led by the Nossal Institute for Global Health at the University of Melbourne. The Nossal Institute team was supported by Arbeiter-Samariter-Bund’s Office for Indonesia and the Philippines (ASB) in the review of grey literature.  This report begins by outlining the approach taken to the academic and grey literature reviews. This is followed by an overview of findings, which maps evidence from different sectors against thematic areas based on the Humanitarian Inclusion Standards for Older People and People with Disabilities (HIS).

 

Supplementary information is available as a separate accompanying annex. The annex includes a summary of each article identified in the review arranged by HIS and sector; graphs showing the distribution of articles, including by year, humanitarian context, and geographical region; and a list of guidelines on the inclusion of people with disability and older people in humanitarian response

Human-centred design in humanitarian settings: Methodologies for inclusivity

HAMILTON, Zoe
CASSWELL, Jenny
ALONSO, Aline
July 2020

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This report documents the human-centred design process used in a project conducted in 2020 in Nairobi, Kenya. It includes research tools that can be used in other contexts, as well as the adaptations that were made to research tools to ensure they were inclusive. These tools are followed by the main lessons learned, and recommendations for others who want to implement a similar process.

The goal of this project was to better understand how people living with disabilities in humanitarian contexts use mobile technology, the barriers they face in accessing mobile services, and the opportunities that mobile might present to increase access to basic services in their daily lives. The target population for this project was urban refugees living with visual or hearing impairments in Nairobi, Kenya. 

The human-centred design tools used included: Location Mapping, User Journeys, Communication Mapping, Future Me and Daily Diaries. 

Global Multidimensional Poverty Index 2020 - Charting pathways out of multidimensional poverty: Achieving the SDG

ALKIRE, Sabina
et al
July 2020

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The global Multidimensional Poverty Index (MPI) measures the complexities of poor people’s lives, individually and collectively, each year. This report focuses on how multidimensional poverty has declined. It provides a comprehensive picture of global trends in multidimensional poverty, covering 5 billion people. It probes patterns between and within countries and by indicator, showcasing different ways of making progress. Together with data on the $1.90 a day poverty rate, the trends monitor global poverty in different forms.

The COVID-19 pandemic unfolded in the midst of this analysis. While data are not yet available to measure the rise of global poverty after the pandemic, simulations based on different scenarios suggest that, if unaddressed, progress across 70 developing countries could be set back 3–10 years.

It is 10 years before 2030, the due date of the Sustainable Development Goals (SDGs), whose first goal is to end poverty in all its forms everywhere. The MPI provides a comprehensive and in-depth picture of global poverty – in all its dimensions – and monitors progress towards Sustainable Development Goal (SDG) 1 – to end poverty in all its forms. It also provides policymakers with the data to respond to the call of Target 1.2, which is to ‘reduce at least by half the proportion of men, women, and children of all ages living in poverty in all its dimensions according to national definition'. By detailing the connections between the MPI and other poverty-related SDGs, the report highlights how the lives of multidimensionally poor people are precarious in ways that extend beyond the MPI’s 10 component indicators.

 

The data is not disaggregated by people with disabilities.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

Use of technology by orientation and mobility professionals in Australia and Malaysia before COVID-19

DEVERELL, Lil
BHOWMIK, Jahar
LAU, Bee Theng
AL MAHMUD, Abdullah
SUKUNESAN, Suku
ISLAM, Fakir M Amirul
MCCARTHY, Chris
MEYER, Denny
2020

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Purpose

Orientation and Mobility (O&M) professionals teach people with low vision or blindness to use specialist assistive technologies to support confident travel, but many O&M clients now prefer a smartphone. This study aimed to investigate what technology O&M professionals in Australia and Malaysia have, use, like, and want to support their client work, to inform the development of O&M technologies and build capacity in the international O&M profession.

 

Materials and Methods

A technology survey was completed by professionals (n = 36) attending O&M workshops in Malaysia. A revised survey was completed online by O&M specialists (n = 31) primarily in Australia. Qualitative data about technology use came from conferences, workshops and interviews with O&M professionals. Descriptive statistics were analysed together with free-text data.

 

Results

Limited awareness of apps used by clients, unaffordability of devices, and inadequate technology training discouraged many O&M professionals from employing existing technologies in client programmes or for broader professional purposes. Professionals needed to learn smartphone accessibility features and travel-related apps, and ways to use technology during O&M client programmes, initial professional training, ongoing professional development and research.

 

Conclusions

Smartphones are now integral to travel with low vision or blindness and early-adopter O&M clients are the travel tech-experts. O&M professionals need better initial training and then regular upskilling in mainstream O&M technologies to expand clients’ travel choices. COVID-19 has created an imperative for technology laggards to upskill for O&M tele-practice. O&M technology could support comprehensive O&M specialist training and practice in Malaysia, to better serve O&M clients with complex needs.

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Practicing in a person-centred environment – self-help groups in psycho-social rehabilitation

LANDSTAND, Bodil J
HEDLUNDl, Marianne
KENDALL, Elizabeth
2020

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Aim: The increasing prevalence of chronic conditions and impairments in the population is putting new demands on health and rehabilitation services. Research on self-help groups suggest that participation in these groups might have a positive impact on people who are struggling with chronic illnesses or disabil- ities. In this study, we explore person-centred support in which participants in self-help groups are under- going rehabilitation to develop their knowledge, skills and confidence necessary to handle life’s challenges.

 

Method: The design is exploratory, analysing data from informant interviews and focus groups (a total of 32 participants) using a Grounded Theory inspired approach to analyse. The participants were rehabilita- tion clients aged between 20 and 60 years; eight were men and twenty-six were women.

 

Results: Three main categories emerged as being important self-help processes that were likely to pro- mote positive rehabilitation outcomes: (1) Learning and practicing safely, (2) A refuge from expectations, (3) Internal processes that accentuate the positives.

 

Conclusion: Peer support delivered through the structured self-help environment can facilitate the devel- opment of new self-awareness, promote acceptance and adjustment, facilitate the establishment of new skills and enable transfer of learning to new environments, including the workplace.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

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PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

Changes in Living Conditions of People with ID: A Follow-Up after 16 Years

CARLSSON, Õie Umb
2020

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Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life.


Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups.


Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, nances, recreational and cultural activ-
ities, family and social relations, society participation, and personal safety.


Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identied within the study group.


Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time.

A systematic review of the cost-effectiveness of emergency interventions for stroke in low- and middle-income countries

BARBOSA, Euridxe
et al
June 2020

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This systematic review surveys the existing evidence surrounding the cost-effectiveness of interventions to address acute stroke in LMIC settings. Five databases were searched for articles related to the cost-effectiveness of emergency care interventions to treat acute stroke in LMICs.

 

https://doi.org/10.1016/j.afjem.2020.05.009

 

African Journal of Emergency Medicine

Available online 11 June 2020
 

Inclusion and education: All means all. Global Education Monitoring (GEM) report 2020

GLOBAL EDUCATION MONITORING REPORT TEAM
June 2020

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The 2020 GEM Report assesses progress towards Sustainable Development Goal 4 (SDG 4) on education and its ten targets, as well as other related education targets in the SDG agenda. The Report also addresses inclusion in education, drawing attention to all those excluded from education, because of background or ability. The Report is motivated by the explicit reference to inclusion in the 2015 Incheon Declaration, and the call to ensure an inclusive and equitable quality education in the formulation of SDG 4, the global goal for education. It reminds us that, no matter what argument may be built to the contrary, we have a moral imperative to ensure every child has a right to an appropriate education of high quality.

The Report also explores the challenges holding us back from achieving this vision and demonstrates concrete policy examples from countries managing to tackle them with success. These include differing understandings of the word inclusion, lack of teacher support, absence of data on those excluded from education, inappropriate infrastructure, persistence of parallel systems and special schools, lack of political will and community support, untargeted finance, uncoordinated governance, multiple but inconsistent laws, and policies that are not being followed through.

Inclusion Works Uganda Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Uganda?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Uganda, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Uganda. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Kenya?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Kenya, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Kenya. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Bangladesh?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Bangladesh, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This situational analysis (SITAN) synthesises the most recent existing literature and evidence (drawing on government and non-government sources available online) about Bangladesh generally and on factors relating to persons with disabilities involvement in formal employment.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

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