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Inclusion of marginalised Aboriginal and Torres Strait Islander peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

TOWNSEND, Clare
McINTYRE, Michelle
LAKHANI, Ali
WRIGHT, Courtney
WHITE, Paul
BISHARA, Jason
CULLEN, Jennifer
2018

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Given the ambiguity surrounding the extent and experience of neurocognitive disability (NCD) among marginalised Aboriginal and/or Torres Strait Islander peoples in Australia, evidence regarding the level and nature of NCD is crucial to ensure equitable access and inclusion into the National Disability Insurance Scheme (NDIS). This paper reports the results of the implementation of The Guddi Protocol (a culturally informed and appropriate screening protocol for Aboriginal and/or Torres Strait Islander peoples) at two locations in Queensland. Results indicated high levels of NCD, and additional qualitative data revealed a number of factors associated with the complex disablement of study participants, namely: i) intergenerational trauma; ii) a social context of disadvantage, marginalisation and exclusion; and iii) the nonidentification of disability. The results are linked to implications for NDIS inclusion for this population, and recommendations are made. Unless the extent and nature of complex disability and the issues surrounding culturally safe policy, and service design and engagement are addressed with and by Aboriginal and Torres Strait Islander peoples, including those who experience complex disablement, marginalised people will continue to be effectively excluded from the NDIS.

 

Disability and the Global South, 2018, Vol.5, No. 2, 1531-1552

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand

RIVAS VELARDE, Minerva C.
O'BRIEN, Patricia
PARMENTER, Trevor R
2018

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This paper explores how the expressed health needs of Indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. The data collection techniques used involved semi-structured interviews, focus groups and field notes. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Specialised and preventive health care for those with disabilities was found to be particularly problematic. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. The findings and conclusions outlined in this paper advocate the need to build capacity and rights literacy for indigenous peoples with disabilities, particularly with respect to the CRPD, in order to enhance its impact on the health of indigenous people. A legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities is needed if the vision of the CPRD is to be realised in relation to Article 25. 

 

Disability and the Global South, 2018, Vol.5, No. 2, 1430-1449

‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating intersections of indigenousness, disability and gender in Labrador

STIENSTRA, Deborah
BAIKIE, Gail
MANNING, Susan
2018

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Drawing from qualitative research and over five years of relationship-building with women in Labrador, Canada, this article explores the intersections of Indigenousness, disability and gender. Labrador offers a unique perspective with its three Indigenous nations, including one Indigenous self-government and settler populations; its remote and Northern location; and its long history as a site for resource exploitation, global military presence and colonial displacements. We explore how these features shape the experiences of women with disabilities, including in rejecting the label of ‘disability’ and finding spaces in their communities of both inclusion and exclusion. Understanding the experiences of women with disabilities in Labrador requires recognizing the disabling consequences of colonization and the fast-track urbanization that has accompanied resource development in the region. We highlight some Indigenous models of inclusion that are already working and can provide an opportunity for service providers, governments and those living in communities to learn from them.

 

Disability and the Global South, 2018, Vol.5, No. 2, 1385-1406 

Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’

GILROYA, John
UTTJEKB, Margaretha
GIBSONC, Chontel
SMILERD, Kirsten
2018

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This paper compares and contrasts individual stories of Indigenous peoples working as researchers, with a focus on disability. Firstly, they provide a background to the aim of decolonisation methodology. Second, they highlight their individual stories about thier work, including how they tailored and implemented decolonisation in their research methodology and practices more broadly. They then compare the similarities and differences between their experiences.

 

Disability and the Global South, 2018, Vol.5, No. 2, 1344-1364

Interventions to improve the labour market situation of adults with physical and/or sensory disabilities in low and middle-income countries : a systematic review

TIPNEY, Janice
et al
November 2015

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This systematic review analyses the methodology, collection, and results of fourteen individual studies that examined the effectiveness of fifteen different intervention methods to assist students with disabilities in low and middle income countries to improve the labour market situation

Campbell Systematic Reviews 2015:20

 

Sightsavers disability disaggregation project : India mid-term review report

JOLLEY, Emma
THIVILLIER, Pauline
September 2015

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‘This Mid Term Review (MTR) report contains information on the first six months (July – March) of the disability disaggregation pilot project taking place in Bhopal, India. The report includes information on the processes in place at the different locations to collect data disaggregated by disability and initial results. It also captures attitude, knowledge and experiences of programme managers, decision makers and data collectors around disability, their challenges, and the experiences of Sightsavers’ implementing staff’

Voices of Pacific children with disability : films

BURGESS, Kasimir
June 2015

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A collection of videos by Kasimir Burgess on the experiences of children with disability in Papua New Guinea and Vanuatu. In these videos, the lived experiences of disabled children are featured providing useful insights into their hopes and aspirations as a useful research tool

Disability and social protection forum

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
April 2015

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This webpage presents useful information and materials from a forum held at London School of Hygiene and Tropical Medicine about disability and social protection. Session one set the scene on disability and social protection, and session two focused on the priorities and opportunities to build on the evidence on social protection and disability. Related summaries, audiovisuals and powerpoints are provided from the Forum

Disability and Social Protection Discussion Forum

London, UK

26 March 2015

Education through an ability studies lens

WOLBRING, Gregory
YUMAKULOV, Sophya
2015

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The purpose of this article is to engage with ability expectations evident in the education setting. The authors provide quantitative data on the ability expectation sentiment of children in the education setting from 1851-2014, using the NYT as a source and discuss the future impact of changing ability expectations including the ability expectation that humans enhance themselves beyond the species-typical for the education system (section 3). It also discusses the term learning disability (LD) through the lens of changing ability expectations (section 4) and posit sthat the ability studies framework allows for a new community of practice bringing together people and ideas from disability studies and other fields in an innovative way

Zeitschrift für Inklusion 10(2)

Violence against children with ASD and risks of unintentional violent behaviours : epidemiology and characteristics

VISCI, Giovanni
2015

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“This report is the first part of the action research carried out within the Speak Up project. It presents the research results in the field of epidemiology, as well as the characteristics of children and young people with ASD [Autistic Spectrum Disorder] as victims of abuse or as unintentional perpetrators. This survey was carried out transnationally. Each of the partners involved in the project provided sample cases involving children with ASD as victims of abuse, as well as sample cases involving children and young people with ASD as unintentional perpetrators of violence. The research aims at researching the correlations between violence and the characteristics of autism, and the correlations between forms of maltreatment and their corresponding causes”. The sample size was 70

 

Research part I : survey on the Epidemiology and characteristics of population of investigated children victims or unintentionally perpetrators

 

SPEAK UP project : system for protection and empowerment of autistic child as victim of abuse or unintentional perpetrator (Just/2012/DAP/AG/3192)

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal

ZUURMOND, Maria
et al
December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal. The research looks at the experiences of 21 children aged 6 to 16 years (8 of them had dropped out of school while one had never been enrolled) through in-depth interviews conducted with 21 families (20 caregivers and 13 children), 9 key informant interviews, and visits to two special schools and one integrated school. The report presents the findings and makes recommendations for the way forward

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal : executive summary

December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This executive summary report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal

Disability disaggregation of data : baseline report

JOLLEY, Emma
THIVILLIER, Pauline
SMITH, Fred
December 2014

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“This baseline report contains information on the initial steps (prior to the start of data collection) undertaken to include disaggregation of data by disability in two projects in Tanzania and India. The report includes information on project selection, development of an Monitoring and Evaluation (M&E) plan, adaptation of data collection tools and training of Country Office staff, partners and data collectors. This baseline also captures the knowledge, attitudes and practices of programme managers, decision makers and data collectors around disability, the availability of data, and the experiences of Sightsavers’ implementing staff”

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African university students’ perspectives on disability access

OSIFUYE, Shade
HIGBEE, Jeanne
December 2014

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Responding to the United Nations Convention on the Rights of Persons With Disabilities (CRPD), this paper reports on the results of one phase of a qualitative research study conducted at a large, public, multi-campus university in East Africa to explore the challenges faced by students with physical disabilities. Recommendations from a focus group are presented and implications for pedagogical and institutional transformation are discussed

Journal of Diversity Management, Volume 9, Number 12

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Research & humanities in medical education (RHiME)

DHALIWAL, Upreet
et al
March 2014

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Research and Humanities in Medical Education (RHiME) is an open access, peer-reviewed online journal with the vision to blend humanities with the sciences in medical education. It aims to encourage contributions from and discussion between teachers and students, doctors and patients, the sick and their care-providers, and between health policy makers and policy users

Childhood disability and malnutrition in Turkana Kenya : a summary report for stakeholders and policy

KISIA, James
et al
2014

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This study aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.   The report is intended for stakeholders to inform policy

Research summary : childhood disability and malnutrition in Turkana Kenya

KISIA, James
et al
2014

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This report summarises a study that aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.  The report is intended for stakeholders to inform policy 

Perceived needs related to social participation of people with leprosy-related disabilities and other people with disabilities in Cambodia : a qualitative study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
January 2014

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The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community. A cross-sectional study was completed by conducting a pilot-tested, face-to-face semi-structured interviews, with open and closed questions, and focus group discussions to investigate the perceived needs related to social and economic participation in the community. The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life, and the authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

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

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