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Barriers Faced by Young Adults with Disabilities in Ulaanbaatar, Mongolia Report of a Community-Based Emancipatory Disability Research (CB-EDR)

Sunil Deepak
February 2020

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An Emancipatory Disability Research in Mongolia was carried out as part of a project aimed at promoting independent living among young adults with disabilities living in the national capital Ulaanbaatar (UB). It was focused on young adults with disabilities living in the 9 districts of UB and was seen as a part of the process which provides information and skills to persons for independent living. It was based on the social model of disability - it looked at the different ways in which the society creates disabling barriers which block or make difficult the participation of persons with disabilities in the different domains of life. The idea of conducting the emancipatory research came from an interaction between some Mongolian DPOs and Tegsh Niigem, a Mongolian NGO active in the areas of rehabilitation, who then asked AIFO-Italy for technical support to conduct it. EDR in Mongolia was implemented through a new approach called a “Community-Based Emancipatory Disability Research” (CB-EDR). A group of young persons with different disabilities were identified as volunteer-researchers by their DPOs, trained and then supported to carry out research in 12 broad areas which they had identified, over a period of 18 months. The researchers, individually or in small groups, carried out research on one theme at a time by collecting information about it from the field. They met periodically to share and discuss the findings of their research and to build a common understanding about the key issues related to the selected theme, and what could they do to overcome the barriers they had identified.

Disability Inclusion Helpdesk Report No: 17 : Mobile phone technology for disability-inclusive agricultural development: findings from an evidence review and webinar

AHLENBÄCK, Veronica
LEE, Harri
COE, Sue
February 2020

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Summaries on the findings from the following queries:

A rapid evidence review on best practice in addressing disability and including people with disabilities in agricultural development programming, including mobile agriculture.

An online webinar bringing together practitioners in the mobile agriculture and disability inclusion space highlighting barriers, emerging practice and gaps.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

Standing alone: sexual minority status and victimisation in a rural lower secondary school

ODENBRING, Ylva
2019

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Studies worldwide indicate that sexual minority students often face different forms of bullying in everyday life at school, and young people growing up in communities with conservative values, such as in rural areas, are often in a particularly vulnerable position. Nonetheless, there is an absence of studies addressing the everyday lives of sexual minority students in rural schools. Drawing on interviews with students in the ninth grade of a rural lower secondary school in Sweden, the current study has investigated experiences of violence and harassment routinely directed at sexual minority students at school. The results indicate that the local gender regime is strongly framed by heteronormative values that position non-heterosexual students as the Other. Sexual minority students are exposed to homophobic name-calling on a daily basis, and threats and physical violence are also common. To fit in and to ‘survive’ in school, sexual minority students are forced to accept the homophobic name-calling and are sometimes also forced to physically fight back. This study concludes that it is important that schools address issues around violence directed towards non- heterosexual students, and that ways to create a more inclusive and safe school environment be identified.

The impact of disability on partnership formation in Sweden during 1990-2009

NAMATOVU, Fredinah
HÄGGSTRÖM LUNDEVALLER, Erling
VIKSTRÖM, Lotta
2019

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Evidence suggests that disability negatively affects people’s propen- sity to find a partner. Persons with disabilities that eventually find a partner do so later in life compared to the average population. There is a lack of studies on the differences in partnership opportu- nities for persons with disabilities compared to those without dis- abilities in Sweden. The aim of this study is to assess the impact of disability on partnership formation and to assess whether partner- ship formation varies as a function of individual demographic and socio-economic factors. We use nationwide data available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow persons born from 1973 to 1977 when they were from 16 to 37 years of age and analyze their data using logistic regression. Our findings indicate that regardless of whether a person started to receive a disability pension at an early age or later, it was associated with lower odds for partnership forma- tion. For persons who started receiving disability pension from 16 to 20 years of age, chances for partnership formation reduced with increase in age of partnership. Individuals that started to receive disability pension later were more likely to form partnership prior to receiving disability pension. Partnership formation was less likely among persons born outside Sweden, in persons with mothers born outside Sweden, in individuals born by unmarried mothers and in persons, whose mothers had a high level of education. Partnership was high among women and among persons who had many mater- nal siblings. In conclusion, receiving disability pension was associated with reduced chances for partnership formation. Receiving disability pension might imply financial constraints that negatively influence partnership formation supporting Oppenheimer’s theory on the eco- nomic cost of marriage and the uncertainty hypothesis.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

‘Enabling Access’: A Pilot Study on Access and Use of Assistive Products in the Northern Province, Sri Lanka

HETTIARACHCHI, Shyamani
SUBRAMANIAM, V
RAJAH, Emil
GOWRITHARAN, Paramaguru
NIZAR, Shamra
SALEEM, Shakeela
2019

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Purpose: The need for suitable assistive technology is growing all over the world, not only for people with disabilities but also for the ageing population with functional decline and non-communicable diseases. Access to assistive technology promotes access to education, employment and active societal participation. The aim of this study was to assess the self-reported need by persons with disabilities and by people who were 65 years and older without disabilities in the Northern Province of Sri Lanka, for assistive products; and to identify barriers to accessing these assistive products.

 

Method: This mixed-methods pilot study included 76 participants who were either persons with disabilities or their caregiver or persons 65 years and older, from the Northern Province of Sri Lanka, affected by the now-ended 30-year civil war.  To ascertain trends in the local need for assistive products, a translated version of the World Health Organisation’s Priority Assistive Products List of 50 items was used. In addition, semi-structured interviews with key participants were conducted, to gain some insights into the barriers to accessing assistive products. 

 

Results: The most widely used assistive products among persons with disabilities were connected to war-related injuries. In contrast, those used by the older age group of persons without disabilities were connected to non-communicable diseases and age-related frailty. The assistive products requested by both groups were aids to promote independence in daily activities and to support access to education and employment. The emergent themes included affordability, employment, independence in activities of daily living, stigma and psychological impact, and a lack of awareness and guidance in the use of assistive devices.

 

Conclusion: The findings highlight the need for policies and practices to be informed by local socio-cultural, historical and geographical realities.

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.

How do we improve access to healthcare for people with disabilities?

HUNT, Xanthe
August 2019

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Gaining access to healthcare is often a challenge for people with disabilities in low- and middle-income countries. Part of this has to do with a general dearth of healthcare services in low-resource settings. But part of this difficulty has to do with structural, attitudinal, economic and social barriers to participation and healthcare which affect people with disabilities more than people without disabilities. This lack of access to healthcare is a problem because, in general, people with disabilities may need to access healthcare more frequently than people without disabilities. Full and equitable access to quality healthcare is a human right, and an important imperative of the global agenda. This evidence brief summarises what we know about how to improve access to healthcare for people with disabilities in low-resource settings.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Access into professional degrees by students with disabilities in South African higher learning: A decolonial perspective

NDLOVU, Sibonokuhle
2019

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Background: Former historically disadvantaged social groups such as women, black people and those with disabilities are expected to participate in the skilled labour force that South Africa has pledged to produce for the 21st century. However, in the South African context, research widely neglects access of those into professional degrees in higher learning. There is a need for such an exploration because people with disabilities have been found to be excluded from professional employment.

 

Objectives: Using decolonial theory, this empirical study sought to explore obstacles confronted by students with disabilities at entry in a specific institution of higher learning in South Africa. The aim was to unveil the invisible obstacles and their causes for an effective intervention.

 

Method: A qualitative research design was adopted and in-depth interviews were conducted to collect data from the participants. This particular dimension of research method was chosen to enable dialogue and development of partnership, which is important for collecting rich data.

 

Results: While policies of inclusion still enabled access of all students into professional degrees, there were however inequitable practices, alienation and inequality that excluded students with disabilities at entry. Obstacles seen at surface level were not the real ones; the real ones were the deep-seated issues of coloniality.

 

Conclusion: If the underlying causes of obstacles at entry are not visible to students with disabilities themselves and the responsible stakeholders, students might continue to be oppressed on entry into the professional degrees and in higher learning generally. Obstacles can only be dismantled when there is an awareness about their deep-seated causes.

 

 

African Journal of Disability, Vol 8, 2019

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Agriculture and mobile-based interventions for smallholder farmers: best practice on disability inclusion, Disability Inclusion Helpdesk Research Report No. 14

AHLENBÄCK, Veronica
LEE, Harri
COE, Sue
May 2019

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This rapid review addresses the questions: What is current best practice in addressing disability and including people with disabilities within agricultural development programming? What is current best practice in mobile agriculture programming (i.e. mobile-based interventions targeted at smallholder farmers) to include smallholder farmers with disabilities as well as empower them and address key barriers they are facing? 

Barriers in Dental Care Delivery for Children with Special Needs in Chennai, India: A Mixed Method Research

KRISHNAN, Lakshmi
IYER, Kiran
KUMAR, Parangimalai Diwakar Madan Madan
2019

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Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

 

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

 

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

 

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

South Korean elementary school teachers’ experiences of inclusive education concerning students with a multicultural background

KIM, Soo-Kyung
RUNDGREN, Shu-Nu Chang
2019

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Due to the increase of economic immigration over the last few decades, South Korea has rapidly become a multi-ethnic society. The number of students with a multicultural background (SMBs) has increased more than tenfold in the past ten years. Research has revealed that despite physical inclusion of SMBs in general classrooms, SMBs tend to struggle at school as a result of language difficulties, academic underachievement, and social isolation. Shedding light on the Salamanca thinking, this study aims to investigate how teachers’ experiences of SMBs vary according to school cultures. Thirteen teachers from three schools (with different school cultures) were invited to participate in qualitative semi-structured interviews. It was revealed that the teachers, who worked in the different school cultures, expressed differently with regard to (1) teachers’ reasoning about SMBs’ struggles, (2) teachers’ professional knowledge and strategic practices, (3) collaboration with a multicultural education supervising teacher (MEST), and (4) dependency upon external support. The school judged to be contributing to ‘true’ inclusion was characterised by ample support from a MEST and the creation of an inclusive learning environment for SMBs as a whole-school approach. What can further ‘true’ inclusion of SMBs in elementary schools and the implications thereof are discussed.

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.

Changes in employment status, barriers to, and facilitators of (return to) work in breast cancer survivors 5–10 years after diagnosis

VAN MAARSCHALKERWEERD, Pomme E A
SCHAAPVELD, Michael
PAALMAN, Carmen H
AARONSON, Neil K
DUIJTS, Saskia F A
March 2019

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Purpose: To qualitatively investigate changes in employment status, barriers to and facilitators of (return to) work in breast cancer survivors 5–10 years after diagnosis.

 

Materials and methods: Women were eligible to participate in the focus groups if they were younger than 55 years and were employed at time of diagnosis. Data were analysed by two independent researchers using thematic content analysis.

 

Results: Nineteen women participated in three semi-structured focus groups, of whom 18 reported a change in employment status 5–10 years after diagnosis. Perceived barriers to (return to) work shortly after breast cancer diagnosis tended to be disease- and treatment-related, while 5–10 years later, they were personal- and work-related. Participants recommended open communication and support at the workplace, and comprehensive information from (occupational) health care professionals to facilitate dealing with breast cancer at work.

 

Conclusions: Breast cancer survivors still experience changes in employment status 5–10 years after diagnosis. (Occupational) health care professionals should be alert that perceived barriers for returning to work change over time. Future research should focus on increasing awareness (at work) of breast cancer survivors’ needs, providing adequate information and support to all involved, and developing interventions to sustain survivors’ work ability at the long term.

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