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Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
et al
October 2020

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This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.

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.

Addressing the rising prevalence of hearing loss

WORLD HEALTH ORGANISATION (WHO)
February 2018

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Hearing loss is the fourth highest cause of disability globally, with an estimated annual cost of over 750 billion dollars. These facts are well known and have contributed to growing global consciousness on the need for accessible hearing care in all regions of the world. Looking forward however, the demand for hearing care is likely to grow significantly in coming decades. This report highlights the potential escalation of hearing loss to the middle of the century, and focusses on the factors responsible for hearing loss and the means to address them. 

WHO estimates in 2008 found that 360 million people worldwide live with disabling hearing loss, including 32 million children and 180 million older adults. The most recent estimations place this figure at over 466 million people with disabling hearing loss in 2018. The main areas of the world affected by disabling hearing loss are the South Asian, Asia Pacific and Sub-Saharan African regions, with a prevalence rate almost four times that of the high income regions.

 

Measures to address these concerns deal with: prevention of infections in mothers and babies; chronic ear infections; noise exposure; and ototoxic hearing loss.

 

Public health aspects are highlighted. 

Global AgeWatch Insights. The right to health for older people, the right to be counted

ALBONE, Rachel
et al
2018

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This report considers the progress being made to achieve older people's right to health amid the global drive towards universal health coverage. It explores how older people are currently accessing health services and what changes need to be made to improve on this. It considers the role of data in driving and informing changes to health systems and the services they deliver. Data must be collected with and about older people to ensure adequate evidence for service design and delivery that is targeted and appropriate. This report explores the adequacy of current data systems and collection mechanisms and how, alongside health systems, they must be adapted in an ageing world. 

 

This report is supported by 12 country profiles (for Argentina, Colombia, El Salvador, Kenya, Lebanon, Moldova, Myanmar, Pakistan, Serbia, Tanzania, Vietnam and Zimbabwe; see Appendix 1). These provide national information on trends in the physical and mental health status of older people, and population-level information on access to UHC. The profiles are supplemented by data mapping, showing the national data available on older people’s health in the 12 profile countries, and revealing the data gaps. The data mapping results are available at www.GlobalAgeWatch.org.

Measuring Disability and Inclusion in relation to the 2030 Agenda on Sustainable Development

MADANS, Jennifer
LOEB, Mitchell
EIDE, Arne H
2017

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This paper explores the development of disability measures for use in censuses and surveys that can serve to monitor the UN Convention on the Rights of Persons with Disability (UNCRPD) and to disaggregate indicators identified through the 2030 Agenda on Sustainable Development and implementing the Sustainable Development Goals (SDGs). The need for data to implement policies and the challenges to the collection of valid and reliable disability data are presented, and the work of the Washington Group on Disability Statistics (WG) is provided as a means to the collection of internationally comparable disability data. By standardizing data collection instruments used to identify the population with disabilities it will be possible to provide comparable data cross-nationally for populations living in a variety of cultures with varying economic resources. The resulting data can be used to assess a country’s compliance with the UN Convention and the 2030 Agenda for Sustainable Development and, over time, monitor their improvement in meeting the established requirements.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

The state of the world's children 2014 in numbers : every child counts

UNITED NATIONS CHILDREN’S FUND (UNICEF)
January 2014

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This report highlights the critical role data and monitoring play in realising children’s rights. It presents an updated compendium of statistics and data (which has been produced thirty years after the initial report) relating to the position of children throughout the world but particularly within the Global South. The data indicators cover a vast range: from demography, health and education, to rate of progression, child mortality, and disparities by household wealth. It emphasises that credible data, disseminated effectively and used correctly, make change possible to target interventions that help right the wrong of exclusion by identifying needs, supporting advocacy, gauging progress and holding duty bearers to account

Spinal cord injury

WORLD HEALTH ORGANIZATION (WHO)
November 2013

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WHO factsheet on spinal cord Injury (SCI) presents key facts related to spinal cord injury (SCI).  It includes the following details: background information; prevalence; demographic trends; mortality; the health, economic and social consequences of SCI; prevention; improving care and overcoming barriers; and WHO response

Fact sheet N°384

Disability prevalence among adults : estimates for 54 countries and progress towards a global estimate

MITRA, Sophie
SAMBAMOORTHI, Usha
July 2013

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This study estimated disability prevalence among adults at global, regional and country levels using internationally comparable disability data and measure. The authors conducted a retrospective analysis of data from the World Health Survey (WHS) (2002-2004) for nationally representative samples of civilian, non-institutionalized populations in 54 countries. A disability was measured as having at least one severe or extreme difficulty with bodily functions (seeing, concentrating) and activities (moving around, self-care) based on an individual’s self-reports
In the 54 countries under study, severe or extreme functional or activity difficulties are highly prevalent. For all countries, disability prevalence is estimated at 14% for all adults. Low and middle income countries have higher disability prevalence compared to high income countries. Among subgroups, disability prevalence stands at 12% among working age adults and 39% among the elderly. Women have higher prevalence than men.
Disability is found to be highly prevalent among adults, with an estimated global prevalence at 14%. Disability deserves enhanced policy attention and resources in public health and international development
Discussion Paper No: 2013-06, Forthcoming in Disability and Rehabilitation

Global and regional estimates of violence against women : prevalence and health effects of intimate partner violence and non-partner sexual violence

WORLD HEALTH ORGANIZATION (WHO), Department of Reproductive Health and Research
LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE
SOUTH AFRICAN MEDICAL RESEARCH COUNCIL
2013

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"The report presents the first global systematic review of scientific data on the prevalence of two forms of violence against women: violence by an intimate partner (intimate partner violence) and sexual violence by someone other than a partner (non-partner sexual violence). It shows, for the first time, global and regional estimates of the prevalence of these two forms of violence, using data from around the world. Previous reporting on violence against women has not differentiated between partner and non-partner violence"

World report on disability

WORLD HEALTH ORGANIZATION
WORLD BANK
2011

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This report "reviews evidence about the situation of people with disabilities around the world. Following chapters on understanding disability and measuring disability, the report contains topic-specific chapters on health; rehabilitation; assistance and support; enabling environments; education; and employment. Within each chapter, there is a discussion of the barriers confronted, and case studies showing how countries have succeeded in addressing these by promoting good practice. In its final chapter, the report offers nine concrete recommendations for policy and practice which if put in place could lead to real improvements in the lives of people with disability"

Fact sheet : youth with disabilities

UNITED NATIONS PROGRAMME ON YOUTH
2010

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This fact sheet presents general information about youth with disabilities worldwide. It highlights the following specific topics: prevalence, poverty, family situation, education, transition into working life and financial independence, employment, sex and relationship, acceptance and the Convention on the Rights of Persons with Disability (CRPD). This factsheet is useful for people interested in youth with disabilities

IDF diabetes atlas

UNWIN, Nigel
et al
2010

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This report presents evidence that diabetes is a global epidemic. It contains comprehensive information in the following sections: What is diabetes?; The Global Burden; Regional Overviews; Diabetes and Development; Linking Local to Global; Resources and Solutions; References; Additional Resources. This report is useful for health professionals, scientists, economists, policy-makers, and national and international agencies

Preventing intimate partner and sexual violence against women : taking action and generating evidence

WORLD HEALTH ORGANIZATION (WHO)
LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE
2010

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"This document aims to provide sufficient information for policy-makers and planners to develop data-driven and evidence-based programmes for preventing intimate partner and sexual violence against women. Chapter 1 outlines the nature, magnitude and consequences of intimate partner and sexual violence within the broader typology of violence. Chapter 2 identifies the risk and protective factors for such violence and the importance of addressing both risk and protective factors in prevention efforts. Chapter 3 summarizes the scientific evidence base for primary prevention strategies, and describes programmes of known effectiveness, those supported by emerging evi-dence and those that could potentially be effective but have yet to be sufficiently evaluated for their impact. Chapter 4 presents a six-step framework for taking action, generating evidence and sharing results. In the closing section, several future research priorities are outlined and a number of key conclusions drawn"

How can donors help build global public goods in health?

DAS GUPTA, Monica GOSTIN, Lawrence
April 2009

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"Aid to developing countries has largely neglected the population-wide health services that are core to communicable disease control in the developed world. These mostly non-clinical services generate 'pure public goods' by reducing everyone’s exposure to disease through measures such as implementing health and sanitary regulations. They complement the clinical preventive and treatment services which are the donors’ main focus...Donors need greater clarity about what constitutes a strong public health system, and how to build them. The paper discusses gaps in donors’ approaches and first steps toward closing them"

Measuring disability prevalence

MONT, Daniel
Ed
March 2007

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This paper opens by identifying that poverty and disability are inextricably linked. The aim of this document is to provide a concrete definition of disability and explain the significance of measuring the prevalence. The purpose is to provide a set of best practices for data collection that is internationally comparable and specific to disability. This resource would be useful to anyone with an interest in data collection/ measurement and disability and development

Nutritional anaemia

BADHAM, Jane
ZIMMERMANN, Michael B
KRAEMER, Klaus
Eds
2007

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This is guide offers a comprehensive summary of the critical issues from prevalence data and statistics, to economics, through to the diagnosis, funcational consequences and background information on each of the micronutrients believed to be directly or indirectly invovled in anaemia

The state of world population 2005. The promise of equality : gender equity, reproductive health and the Millennium Development Goals

UNITED NATIONS POPULATION FUND (UNFPA)
2005

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This edition of UNFPA's annual report explores the extent to which the world is meeting the targets outlined in the Millennium Development Goals. It assesses progress, examines shortfalls and provides examples of interventions that have resulted in improvements in the lives of individuals, in families and countries. It highlights the importance of women's education, access to reproductive health services and stopping gender-based violence

WHO’s multi-country study on women’s health and domestic violence against women : summary report of initial results on prevalence, health outcomes and women's responses

WORLD HEALTH ORGANIZATION (WHO)
2005

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"Violence against women by an intimate partner is a major contributor to the ill-health of women. This study analyses data from 10 countries and sheds new light on the prevalence of violence against women in countries where few data were previously available. It also uncovers the forms and patterns of this violence across different countries and cultures, documenting the consequences of violence for women’s health. This information has important implications for prevention, care and mitigation... The high rates documented by the Study of sexual abuse experienced by girls and women are of great concern, especially in light of the HIV epidemic. Greater public awareness of this problem is needed and a strong public health response that focuses on preventing such violence from occurring in the first place...This study will help national authorities to design policies and programmes that begin to deal with the problem"

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