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

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

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The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Leaving no-one behind: using assistive technology to enhance community living for people with intellectual disability

OWUOR, John
LARKIN, Fiona
MacLACHLAN, Malcolm
April 2017

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The transformation of community care for people with intellectual disabilities (ID) through enhanced access to assistive technology (AT) is discussed. The problems associated with lack of access to AT and the extent to which these occur are reported. Issues in lack of AT provision, including lack of global standards, are discussed. A call to action is made with reference to the appropriate parts of CRPD.   

 

 

Disability and Rehabilitation: Assistive Technology, 12:5, 426-428

DOI: 10.1080/17483107.2017.1312572 

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Inclusive Education Booklets and Webinars

UNICEF Europe and Central Asia Regional Office
February 2017

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With the view to promoting Inclusive Education systems, the UNICEF RO for CEE/CIS in collaboration with the Education and Disability Sections at HQ, has developed a cohesive set of products related to Inclusive Education, products that will support the capacity development of UNICEF staff and provide them with a set of materials that can be used in the field. Below you can find a series of webinars and companion booklets, each dedicated to a specific thematic area, under the overall title of A Rights-Based Approach to Inclusive Education for Children with Disabilities.

The series is intended to provide practical guidance to UNICEF staff and their partners on the issues of Inclusive Education with a focus on children with disabilities, by exploring specific concerns, policy and implementation issues specific to thematic areas. The webinars provide the audience with the necessary tools and references to guide further study, and determine the capacity development needs of each country. Each webinar and its companion booklet was developed by an expert on a specific thematic area.

Educational inclusion and critical neuroscience: friends or foes?

BILLINGTON, Tom
2017

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Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Partnerships in mental healthcare service delivery in low-resource settings: developing an innovative network in rural Nepal

BIBHAV Acharya
et al
January 2017

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Abstract

Background

Mental illnesses are the largest contributors to the global burden of non-communicable diseases. However, there is extremely limited access to high quality, culturally-sensitive, and contextually-appropriate mental healthcare services. This situation persists despite the availability of interventions with proven efficacy to improve patient outcomes. A partnerships network is necessary for successful program adaptation and implementation.

Partnerships network

We describe our partnerships network as a case example that addresses challenges in delivering mental healthcare and which can serve as a model for similar settings. Our perspectives are informed from integrating mental healthcare services within a rural public hospital in Nepal. Our approach includes training and supervising generalist health workers by off-site psychiatrists. This is made possible by complementing the strengths and weaknesses of the various groups involved: the public sector, a non-profit organization that provides general healthcare services and one that specializes in mental health, a community advisory board, academic centers in high- and low-income countries, and bicultural professionals from the diaspora community.

Conclusions

We propose a partnerships model to assist implementation of promising programs to expand access to mental healthcare in low- resource settings. We describe the success and limitations of our current partners in a mental health program in rural Nepal.

Network on inclusive employment of people with disabilities

SHEKULO TOV
2017

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The establishment of an international digital network on inclusive employment of people with disabilities is proposed.

The main goals of this digital network are to:

  • Enhance strategic networking, engagement and dialogue among the different stakeholders around the world
  • Disseminate cutting edge knowledge, good practice and innovations through diverse formats
  • Actively involve people with disabilities in the promoting this issue in all levels.

Activities of the network to include: an electronic mailing list; a monthly webinar and presentations of new research findings and evidences and of policy papers and information material

My disability matters – news website

REARDON, Dale
2017

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My Disability Matters (MDM) provides a news and article curation and republishing service to alert readers to stories published in the mainstream and disability media and disability niche blogs that relate to disability and disability advocacy. News based in various parts of the world: Australia, Canada, Europe, New Zealand, Rest of World, UK, USA

Virtual knowledge center to end violence against women and girls

UNITED NATIONS ENTITY FOR GENDER EQUALITY AND THE EMPOWERMENT OF WOMEN
2017

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This Knowledge Centre is designed to serve the needs of policymakers, programme implementers and other practitioners dedicated to addressing violence against women and girls. It's primary purpose is to encourage and support evidence-based programming to more efficiently and effectively design, implement, monitor and evaluate initiatives to prevent and respond to violence against women and girls. To achieve this, the Global Virtual Knowledge Centre offers a ‘one stop’ service to users by making available the leading tools and evidence on what works to address violence against women and girls. It draws on expert recommendations, policy and programme evaluations and assessments, and fundamentally, on practitioners’ experiences from around the world

Global database on violence against women

UN WOMEN
2017

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"Violence against women and girls is one of the most systematic and widespread human rights violations. According to a 2013 global review of available data, 35 per cent of women worldwide have experienced either physical and/or sexual intimate partner violence or non-partner sexual violence. Eliminating such violence globally requires intensive efforts, which led world leaders to establish an online tool that increases opportunities to exchange experiences and strengthen knowledge to prevent and stop violence against women. The Global Database on Violence against Women provides easy access to comprehensive and up-to-date information on measures undertaken by United Nations Member States to address all forms of violence against women.

The Database is designed to:

  • Provide easy access to comprehensive and up-to-date information on measures undertaken by Governments to address all forms of violence against women;
  • Increase opportunities for exchange of experiences in addressing violence against women;
  • Strengthen the knowledge-base for effective policy responses to prevent and address violence against women; and
  • Encourage the further collection, availability, use and dissemination of data on violence against women, as well as analysis of such data"

Humanitarian Hands on Tool (HHoT)

CBM
2017

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The CBM smartphone app 'Humanitarian Hands-on Tool' (HHoT) provides step-by-step guidance on how to implement an inclusive emergency response. With disability-inclusive humanitarian action broken down into individual task cards, which explain the basic 'how-to' details in simple language and images, this web-based tool and downloadable mobile app aims to become the ‘go-to’ field resource for all agencies planning humanitarian work that leaves no-one behind

Pilot testing of 3D printing technology for transtibial prosthesis in complex contexts (Togo, Madagascar and Syria)

CONICAVE, Jerome
TAN, Daniele
2017

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In January-October 2016, Handicap International carried out a pilot testing of 3D printing technology for transtibial prosthesis in Togo, Madagascar and Syria. The aim of the study was to explore and test how physical rehabilitation services can be more accessible to people living in complex contexts via innovative technologies (such as 3D printing, treatment processes that use Internet technology and tools) and decentralised services by bringing them closer to the patients. This scientific summary provides the context, the objectives, the methodology, the results of the study, and perspectives for the future.

A number of technical appendices are available

RS/05

Rehabilitation in health systems

WORLD HEALTH ORGANISATION (WHO)
2017

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This document provides evidence-based, expert-informed recommendations and good practice statements to support health systems and stakeholders in strengthening and extending high-quality rehabilitation services so that they can better respond to the needs of populations. The recommendations are intended for government leaders and health policy-makers and are also relevant for sectors such as workforce and training. The recommendations and good practice statements may also be useful for people involved in rehabilitation research, service delivery, financing and assistive products, including professional organisations, academic institutions, civil society and nongovernmental and international organisations. The recommendations focus solely on rehabilitation in the context of health systems. They address the elements of service delivery and financing specifically. The recommendations were developed according to standard WHO procedures, detailed in the WHO handbook for guideline development

Accessibility for All: Good practices of accessibility in Asia and the Pacific to promote disability-inclusive development

AKIYAMA, Aiko
HOLLIS, Jake
KRETZSCHMAR, Tyler
December 2016

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"This publication seeks to support policymakers in promoting accessibility at a policy and practical level. It contains information on relevant global and regional mandates that support and promote disability-inclusive development and accessibility, with a view to demonstrate the multi-faceted value of focusing on disability and accessibility policies to achieve broader development goals. Readers will learn about the core concepts of disability and accessibility, and be empowered with knowledge on standards, tools and means of promoting accessibility. Furthermore, this publication will outline and analyse examples of good practices of accessibility identified in Asia and the Pacific. The majority of the good practices featured in this publication were initially discussed at two international and multi-stakeholder workshops that took place in 2014 and 2015, with a few additional examples drawn from Pacific island member States. The selection of practices for this publication is based on their embodiment of the principles of accessibility, demonstrated success, measurable impact on the community, and their adaptable and replicable nature"

Report of the Special Rapporteur on the rights of persons with disabilities (theme: access to rights-based support for persons with disabilities)

DEVANDAS, Catalina
December 2016

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In her report, the Special Rapporteur provides an overview of the activities undertaken in 2016, as well as a thematic study on access to support by persons with disabilities. The study includes guidance for States on how to ensure the provision of different forms of rights-based support and assistance for persons with disabilities, in consultation with them. In preparing the study, the Special Rapporteur convened a regional expert consultation in Addis Ababa in September 2016 and analysed the responses to a questionnaire sent to Member States, national human rights institutions, agencies of the United Nations system, civil society organisations and persons with disabilities and their representative organisations. As at 5 December 2016, she had received 114 responses. 

healthsites.io website

November 2016

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The Global Healthsites Mapping Project is an initiative to create an online map of every health facility in the world and make the details of each location easily accessible. The aim of this website is the long term curation and validation of health care location data. The healthsites.io map will enable users to discover what healthcare facilities exist at any global location and the associated services and resources. Through collaborations with users, trusted partners and OpenStreepMap the location and contact details of every facility will be captured and the data made freely available under an Open Data License (ODBL). When a natural disaster or disease outbreak occurs there is a rush to establish accurate health care location data that can be used to support people on the ground. healthsites.io map aims to reduce the time wasted in establishing accurate and accessible baseline data.

 

World Social Science Report 2016 | Challenging Inequalities: Pathways to a Just World

LEACH Melissa
GAVENTA, John
JUSTINO, Patricia
DENIS, Mathieu
November 2016

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Inequalities are multi-dimensional, multi-layered and cumulative. The Report makes clear that understanding and acting effectively upon inequalities requires looking beyond income and wealth disparities to capture their political, environmental, social, cultural, spatial, and knowledge features. Untangling such complexity is a challenge we must fully take on – if we are to develop policies and solutions that are feasible and sustainable.

 

The Report also emphasizes that the costs of inequalities are very high and borne by all – not just by the deprived and the excluded, but collectively, by current and future generations, in the form of heightened conflict and instability, economic and fiscal losses, environmental degradation, and political tensions. Reducing inequalities is thus everyone’s concern.

 

Countering inequalities requires robust knowledge – but knowledge alone is not enough. The challenge is to improve the connection between what we know and how we act: to mobilize the knowledge of the social and human sciences to inform policies, underpin decisions and enable wise and transparent management of the shift towards more equitable and inclusive societies. In this sense, investment in knowledge is a down-payment for informed change.

 

And in some respects, even the knowledge we have is not fully adequate. Social science research agendas equally require revisiting. The Report calls for a step change towards a research agenda that is interdisciplinary, multiscale and globally inclusive, creating pathways for transformative knowledge.

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia

DADUN, Dadun
PETERS, Ruth
LUSLI, Mimi
MIRANDA-GALARZA, Beatriz
VAN BRAKEL, Wim
ZWEEKHORST, Marjolein
DAMAYANTI, Rita
IRWANTO, Irwanto
BUNDERS, Joske
2016

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Purpose: This article explores the complexities of leprosy-related stigma and the potential effectiveness of a socio-economic intervention in Cirebon District, Indonesia.

 

Methods: A qualitative approach was adopted. 53 people affected by leprosy were interviewed, and 17 focus group discussions were conducted among people affected by leprosy, community and religious leaders, and health providers and other key persons who were all purposively selected.

 

Results:  People affected by leprosy face major socio-economic consequences. This was confirmed by key persons. Several opportunities for a possible socio-economic intervention were perceived, as also the barriers. People affected by leprosy are constrained by certain aspects of the health system (e.g., the health providers’ negative attitudes), views in society (e.g., misunderstandings about the condition, stigma), and the physical and social consequences of the disease (impairments, feelings of shame). Study participants identified strategies to deal with these barriers, as well as specific activities for a socio-economic intervention; in particular, the training of staff responsible for implementation.

 

Conclusion and Implications: Socio-economic interventions in the field of leprosy need to anticipate the barriers and develop strategies to deal with them. Cooperation between people working in the health system and those in the welfare / financial system is needed, to improve the quality of life of people affected by leprosy

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