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Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne H
LAMICHHANE, Kamal
Neupane, Shailes
November 2019

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Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

 

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

 

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

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The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Systems thinking for assistive technology: a commentary on the GREAT summit

MACLACHLAN, Malcolm
SCHERER, Marcia J
2018

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The area of assistive technology has a long history of technological ingenuity and innovation. In order to ensure that the benefits of assistive technology are equitably distributed across the population and life course, it is necessary to adopt a systemic approach to the area. We describe examples of systems thinking and non-systems thinking across 10 Ps. These Ps are People (or users, as the primary beneficiaries of assistive technology), Policy, Products, Personnel, Provision (as key strategic drivers at systems level); and Procurement, Place, Pace, Promotion and Partnership (as key situational factors for systems). Together these Ps should constitute a framework for an “open” system that can evolve and adapt, that empowers users, inter-connects key components and locates these in the reality of differing contexts. The adoption of a stronger systems thinking perspective within the assistive technology field should allow for more equitable, more resilient and more sustainable assistive technology across high, middle- and low-income contexts and countries.

Compliance with standards of practice for health-related rehabilitation in low and middle-income settings: development and implementation of a novel scoring method

PRYOR, Wesley
NEWAR, Pushpak
RETIS, Chiara
URSEAU, Isabelle
April 2018

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Purpose: To (A) develop a method for measuring compliance with standards, and (B) implementation of the method in 12 rehabilitation centers in six low and middle-income countries (LMICs).

 

Methods: In part A, existing standards were compiled and operationalized into scores, organized into 5 ‘scorecards’ and 15 ‘sub-scorecards’, then tested and refined in an iterative process. In part B, 12 rehabilitation centers in 6 countries implemented the standards using the new method, revealing relative performance between centers, and across different standards. Internal consistency of scores within domains was computed using Chronbach’s alpha.

 

Results: A standardized method for scoring compliance with standards for rehabilitation was developed. The method evaluated compliance with standards in five domains of practice: user focused approach, service outputs, finances, staff, and general management. Multiple standards within domains were strongly related, with Chronbach’s alpha >0.80 for all but the equipment and supplies domain. Overall, in the 12 rehabilitation centers examined, 36% of standards were met or exceeded. Compliance within each scoring domain was 56% (user-focused approach), 38% (service outputs), 27% (financial management), 30% (staff management), and 33% (general management). Two out of 12 (17%) of centers met more than two-thirds of the standards, 3 (25%) met more than one-third of standards, while the remaining 7 (58%) met less than one-third of standards.

 

Conclusions: A new, standardized method for measuring performance of rehabilitation services in LMICs was developed. The method examines standards in five rehabilitation practice domains, and can be used to understand barriers to quality performance, particularly in resource-constrained settings. Implementation of the method demonstrated that current compliance with standards is modest. Ongoing interest in new standards for rehabilitation practice should be accompanied by measures to ensure they are used to strengthen quality in an emerging rehabilitation sector.

Disability inclusive elections in Africa: a systematic review of published and unpublished literature

VIRENDRAKUMAR, Bhavisha
JOLLEY, Emma
BADU, Eric
SCHMIDT, Elena
2018

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The United Nations Convention on the Rights of Persons with Disabilities underscores the equal right of persons with disabilities to participate in political life. However, in Africa they are often unable to exercise their right to vote. This study sought to systematically review available evidence on inclusive elections in Africa. Findings showed that although most African countries ratified disability-focused legislation and proclaimed equal opportunities, the implementation of the legislation varies across the continent. Barriers to political participation can occur at any electoral stage and can be broadly categorised into three groups: lack of education and financial resources; stigma and negative social attitudes; and inaccessible physical infrastructure.

‘Civilising’ Deaf people in Tibet and Inner Mongolia: governing linguistic, ethnic and bodily difference in China

HOFER, Theresia
SAGLI, Gry
2017

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The People’s Republic of China is home to over 20 million d/Deaf and hard-of-hearing people, many among them belonging to ethnic minorities. Drawing on ethnographic fieldwork in two minority regions, the Tibet Autonomous Region and the Inner Mongolian Autonomous Region, this article comparatively discusses findings on sign language use, education and state welfare policies. The situation in these domains is analysed through the framework of the ‘civilising project’, coined by Harrell, and its impacts on the d/Deaf and hard-of-hearing among ethnic minorities are shown. For instance, through the promotion of Chinese and Chinese Sign Language over and above the use of local sign and written languages as well as through education and the medicalisation of disabilities.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

YNNESDAL HAUGEN, Lill Susann
ENVY, Andreas
BORG, Marit
EKELAND, Tor-Johan
ANDERSSEN, Norman
2016

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In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

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.

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

Enabling disability inclusive practices within the University of Cape Town curriculum: A case study

OHAJUNWA, Chioma
MCKENZIE, Judith
LORENZO, Theresa
2015

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Background: Disability inclusion in the curricula of higher education institutions contributes to socially responsive graduates with a capacity to address the cross-cutting issue of disability in development. This article discusses a study conducted at the University of Cape Town (UCT), South Africa, to explore disability inclusion.

 

Methodology: An instrumental case study approach was adopted and a thematic analysis of data was done.

 

Findings: Academic staff found a variety of ways to include disability, such as discussions in class, practice and service learning, but mainly as part of disciplinary requirements. Including disability as an issue of social justice stems mostly from the personal interest of staff, and is done in an ad hoc manner.

 

Conclusion: Disability should be valued, and integrated into the curriculum in a structured manner as a perspective on diversity with which to interrogate our beliefs about ourselves and society. Theorising on disability is needed, as well as the unique perspectives that emerge across interdisciplinary boundaries, especially within the African context.

Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India

GEORGE, C E
NORMAN, G
BENJAMIN, T E
MUKHERJEE, D
2014

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Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India.

 

Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out.

 

Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist back-up services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

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.

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