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Disability Data Lab learning paper: a practical guide to disability data

JENKINSON, Astrid
et al
December 2019

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The Bond Disability and Development Group (DDG) has commissioned this learning paper to summarise discussions which took place at the DDG’s Data Lab workshop, held in London on 22 October 2019, and to be used as a reference document going forward. This first workshop focused on why organisations need to collect disability data; what tools are available and practical ways in which these can be used. This learning paper provides a summary of these discussions and can act as a guide and reference tool for organisations looking to be more inclusive in their programming, generally, and in their data collection practices, specifically. A number of case studies and numerous resource references are provided.

Rehabilitation for the realisation of human rights and inclusive development

COLE, Ellie
et al
July 2019

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This report illustrates how rehabilitation contributes to achievement of several of the Sustainable Development Goals (SDGs), improves global health, and promotes the realisation of human rights for all. The purpose of this report is to provide evidence to stakeholders upon which to build successful strategies to improve the availability of quality, coordinated, affordable, and user-centred rehabilitation. By situating disability and rehabilitation within global discourse and policy, it is intended to provide guidance on the implementation of effective rehabilitation-focused policy and practice, contributing to progress towards global development goals.

SDGs 1,3,4,5,8, 10 and 11 are considered

The report concludes with sets of specific recommendations for different stakeholders (states, donors and civil society, including disabled people’s organisations), which have the potential to strengthen rehabilitation services and improve the health and wellbeing of millions around the world. Included in annex are case studies of government donors and their progress towards meeting the recommendations set out in this report. These case studies are intended to serve as examples for stakeholders for how some of the recommendations have already been included within national policies and activities, where gaps exist and identify areas for improvement.
 

Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Need to know guidance: Working with persons with disabilities in forced displacement

UNHCR
2019

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In situations of forced displacement, persons with disabilities have the same rights and basic needs as others and face the same challenges as other individuals. They also face particular protection risks such as heightened risk of violence, exploitation and abuse, as well as high levels of stigma.  Guidance is given concerning the application of an age, gender and diversity approach, to achieve protection, assistance and solutions. Example approaches are provided concerning: non discrimination; changing attitudes about disability and promoting respect for diversity; Improving identification and data collection; making all facilities physically accessible; ensuring accountability mechanisms are inclusive; preventing and responding to violence and abuse; and building links with organizations of persons with disabilities & other national and local actors.

The future is inclusive. How to make international development disability-inclusive

KEOGH, Mary
January 2014

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This first publication in our series on disability inclusive development covers key facts and figures on the situation of women, men, girls and boys with disabilities living in lowincome countries and presents the reasons why development and humanitarian actions must be disability-inclusive. •

Chapter 1 introduces the key concepts in disability-inclusive development and reflects also on CBM’s own journey towards disability-inclusive development.

Chapter 2 highlights why the inclusion of women, men, girls and boys with disabilities is important for effective development and humanitarian outcomes.  

Chapter 3 sets out why the human rights of women, men, girls and boys with disabilities are closely associated with development both at home and in international cooperation.

Chapter 4 highlights the key issues which cause barriers to disability-inclusive development, and provides a set of principles, case studies and good practice examples of how it can be achieved.  

Chapter 5 concludes with some key messages and introduces the topics that we will address in future publications in this series.

Sustainable development in an ageing world : a call to UN member states on the development agenda beyond 2015

HELPAGE INTERNATIONAL
AARP OFFICE OF INTERNATIONAL AFFAIRS
INTERNATIONAL FEDERATION ON AGING
September 2013

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This paper responds to UN discourse and highlights that the post-2015 development framework should be inclusive of older people along with others and address the rights and needs of people of all ages. It provides recommendations to the UN Member States with regard to ageing and the post 2015 agenda

Old age, disability and mental health : data issues for a post-2015 framework

SAMMAN, Emma
RODRIGUEZ-TAKEUCHI, L. K
May 2013

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"This Background Note focuses on inequalities associated with old age, disability and mental health. It argues that these should be considered salient sources of group-based difference, given the numbers of people affected, their marginalisation and vulnerability, and their relative neglect in international agreements to date. This note identifies a lack of data as a particular concern, but one that can be addressed through revisions to standard household surveys. To this end, the paper discusses the available data and their limitations, constraints to better data collection and efforts needed to adjust key international survey instruments -the World Bank’s Core Welfare Indicator Questionnaire (CWIQ) and Living Standards and Measurement Survey (LSMS), Macro International’s Demographic and Health Survey (DHS) and the UNICEF Multiple Indicator Cluster Survey (MICS)- to collect reliable data on these issues. It sets out technical adjustments that would enable these surveys to broaden their coverage, collect richer information and improve their identification of these three groups. It concludes by commenting on how measures to address the inequalities that affect these groups could be incorporated within a new post-2015 framework agreement"
ODI Background note

Forgotten sisters : a report on violence against women with disabilities|An overview of its nature, scope, causes and consequences

ORTOLEVA, Stephanie
LEWIS, Hope
August 2012

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This report focuses upon prevalence and pervasiveness of violence against women and girls with disabilities. It "reviews available information on the forms, causes and consequences of violence against women when both gender and disability collide to exacerbate that violence; examines the impact of the multiple and intersecting dimensions of women’s lives and; their impact on violence against women with disabilities. The Report outlines the international and regional legal framework, highlighting relevant provisions and interpretations. Finally, the Report examines the extent to which States have met their due diligence obligations (setting forth a few country-specific case studies) highlights some best practices, discusses significant gaps in the research and makes recommendations for future action"
Paper series no 104-2012

Towards inclusive WASH : sharing evidence and experience from the field

WATERAID AUSTRALIA
July 2012

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"This publication is a record of efforts to achieve equity and inclusion in WASH programming around the world. It includes one keynote paper and 16 case studies from 13 countries. Within its pages there is a clear message that ‘business as usual’ is not sufficient to meet the water and sanitation rights of traditionally excluded or marginalised groups. The case studies are therefore a story of adaptation, of technology, of process and of policy, and innovation to try something new. Many of the case studies are accompanied by supporting materials, including research reports, survey tools and videos. The authors hope these materials will be of use to other practitioners who hope to build on the stories presented in this publication"
Note: full details of each case study are provided on the website

The OPERA framework : assessing compliance with the obligation to fulfil economic, social and cultural rights

CORKERY, Allison
WAY, Sally-Anne Way
OTERO, Victoria Wisniewski
2012

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“This paper presents a practical framework for integrating different tools and techniques in order to provide a more comprehensive assessment of how public policies comply with the obligation to fulfill ESC rights. The OPERA framework (so called because it triangulates Outcomes, Policy Efforts and Resources to make an overall Assessment) articulates relevant human rights standards and principles to take into account when monitoring ESC rights fulfillment and offers practical guidance on which tools and techniques might be employed to evaluate them. These range from simple descriptive statistics that summarize data to more complex fiscal policy and budget analysis that assess the availability and allocation of resources. By making explicit this crucial link between the various human rights standards and principles that underpin the obligation to fulfill and the different assessment methods available to monitor them, the framework enables a systematic approach to building evidence of failures to fulfill ESC rights”

Best practices for including persons with disabilities in all aspects of development efforts

FORGACS, R. T
November 2011

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"The present document has been prepared in response to the request in paragraph 15(b) of General Assembly resolution 65/186, in which the Secretary-General was asked to 'provide information on best practices at international, regional, sub regional and national levels for including persons with disabilities in all aspects of development efforts'...The document is divided into four main sections. Following this brief introduction, section II will focus on the initial criteria for the assessment of best practices. Section III presents a number of recommendations, suggesting also how the United Nations can facilitate the process of mainstreaming disability and persons with disabilities in development and highlighting the interlinks between the mainstreaming of disability and achievement of the Millennium Development Goals (MDGs); and section IV contains 26 case studies from across the globe"

Child-centred disaster risk reduction : building resilience through participation : lessons from Plan International

PLAN INTERNATIONAL
2010

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This report “presents the results and recommendations of a five-year programme and…includes a series of case studies illustrating how child-centred Disaster Risk Reduction (DRR) supports the delivery of the Hyogo Framework’s Priorities for Action, as well as the realisation of children’s rights to education, health and participation within disaster risk contexts…Child-centred Disaster Risk Reduction is an innovative approach to Disaster Risk Reduction (DRR) that fosters the agency of children and youth, in groups and as individuals, to work towards making their lives safer and their communities more resilient to disasters”

Effective learning

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION
December 2008

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This booklet: * Introduces the concepts of quality education and effective learning. * Provides an overview of the impact of HIV and AIDS on quality education and effective learning. * Summarises the factors that contribute to effective learning in the context of HIV and AIDS education. * Highlights key issues to consider in developing and adapting HIV and AIDS learning materials, illustrated with case study examples.

Zip zip my brain harts

BUCKLAND, Angela
et al
2006

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This book contains photographs by Angela Buckland interspersed with text by researchers interested in disability issues. Its aim is to..."increase public awareness of the needs and human rights of disabled people and their families"

Ethical approaches to gathering information from children and adolescents in international settings : guidelines and resources

SCHENK, Katie
WILLIAMSON, Jan
2005

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This publication was developed in response to the need for guidance in research activities involving children and adolescent with HIV/AIDS. It is aimed at project managers and researchers gathering information from and about children, and provides recommendations on how to avoid unintentional harm and how to safeguard the rights of vulnerable children during the process of data collection. Part 1 of this document presents some key principles and considerations that must be considered from the earliest stages of planning and throughout the information-gathering activity. Part 2 contains practical ethical guidelines, which are presented using a question-and-answer format. Part 3 summarizes the main recommendations and suggests roles for various staff members involved in information gathering activities with children and adolescents

HIV-related stigma, discrimination and human rights violations: case studies of successful programmes

JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
2005

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This report is a collection of case studies of projects, programmes and activities around the world that have used innovative methods to challenge HIV-related stigma, discrimination and human rights violations. The case studies are grouped under stigma-reduction approaches; anti-discrimination measures; and human rights and legal approaches. They are followed by some cross-project/activity analysis that identifies common elements and a number of key principles of success, each of which offers an entry point for innovative and potentially effective work

Phase 1 report : opportunities, methodologies, and training resources for disability rights monitoring

DISABILITY RIGHTS PROMOTION INTERNATIONAL (DRPI)
October 2003

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This research was carried out to inform the development of an international disability rights monitoring system. Chapter one provides background information to the project. Chapter two reviews the potential use of international human rights treaties to advance disability rights, identifying seven major human rights treaties that offer opportunities for disability rights advocacy. Chapter three identifies useful human rights monitoring tools, guidelines and models. Chapter four gives an overview of the inventory of human rights training resources, identifying materials and courses suitable for use in general human rights education, for identified training organisations and potential partners

Toolkits : a practical guide to monitoring, evaluation and impact assessment

GOSLING, Louisa
EDWARDS, Mike
2003

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This field-tested toolkit has been designed to measure the extent to which programmes make a difference. The 2003 edition of Toolkits has been extended with contributions from SCF and beyond. It describes participatory methodologies, such as mapping and focus groups. It is divided into three sections: underlying principles, practical questions and tools. This new edition brings these up to date and discusses the implications of adopting a human rights approach to development and the increased emphasis on partnership. There are new chapters on impact assessment, monitoring and evaluating advocacy, as well as two new tools - one for improving planning, evaluation, and impact assessment and one for stakeholder analysis

The international guidelines on HIV/AIDS and human rights : how are they being used and applied? An assessment of national responses in improving access to HIV/AIDS treatment within the framework of the International Guidelines on HIV/AIDS and Human Righ

INTERNATIONAL COUNCIL OF AIDS SERVICE ORGANISATIONS (ICASO)
May 2002

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In 1996 ICASO issued guideline to member states to assist them in designing programmes and policies that protect and promote human rights in the context of confronting the AIDS pandemic. This publication is a report of a community research project trying to get a clear indication on how the process was progressing. The research focuses on acces to quality treatment, and the role that communities have played in improving that access. This report is based on the responses from 21 organisations in 15 of the 40 member countries. The main conclusions of the report are that the guidelines are a tool to advocate for improvements in the situation of HIV/AIDS; that the guidelines are not widely used by advocates and have not been incorporated into national legislation; anti-retrovirals are available but not accessible to the general popoulation (price being a key issue in this); and that even though prices of ARVs was high, this was not the only reason for the lack of ARVs in some countries (weak infrastructures also played a part). The report concludes with recommendations for further action

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