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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.

Global Leprosy Update 2019

WORLD HEALTH ORGANISATION (WHO)
September 2020

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A yearly update providing data from 160 countries around the world on the state of leprosy. The data will be useful to policy-makers, planners and researchers. 

The main leprosy indicators are now all based on a denominator of 1 million population. The key indicators are the case detection rate, the disability rate and the case detection rate in children.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets

 

Weekly Epidemiological Record  4 SEPTEMBER 2020, 95th YEAR No 36, 2020, 95, 417–440

 

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Global Multidimensional Poverty Index 2020 - Charting pathways out of multidimensional poverty: Achieving the SDG

ALKIRE, Sabina
et al
July 2020

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The global Multidimensional Poverty Index (MPI) measures the complexities of poor people’s lives, individually and collectively, each year. This report focuses on how multidimensional poverty has declined. It provides a comprehensive picture of global trends in multidimensional poverty, covering 5 billion people. It probes patterns between and within countries and by indicator, showcasing different ways of making progress. Together with data on the $1.90 a day poverty rate, the trends monitor global poverty in different forms.

The COVID-19 pandemic unfolded in the midst of this analysis. While data are not yet available to measure the rise of global poverty after the pandemic, simulations based on different scenarios suggest that, if unaddressed, progress across 70 developing countries could be set back 3–10 years.

It is 10 years before 2030, the due date of the Sustainable Development Goals (SDGs), whose first goal is to end poverty in all its forms everywhere. The MPI provides a comprehensive and in-depth picture of global poverty – in all its dimensions – and monitors progress towards Sustainable Development Goal (SDG) 1 – to end poverty in all its forms. It also provides policymakers with the data to respond to the call of Target 1.2, which is to ‘reduce at least by half the proportion of men, women, and children of all ages living in poverty in all its dimensions according to national definition'. By detailing the connections between the MPI and other poverty-related SDGs, the report highlights how the lives of multidimensionally poor people are precarious in ways that extend beyond the MPI’s 10 component indicators.

 

The data is not disaggregated by people with disabilities.

Ear and hearing survey handbook

WORLD HEALTH ORGANISATION (WHO)
May 2020

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This survey handbook provides guidance for planning and implementing hearing loss surveys, including information on possible data collection tools. The survey handbook aims to enable countries – particularly low- and middle-income countries – to gather data by planning and implementing population-based epidemiological surveys.

The main uses of data collected by such surveys are:

  • to provide an accurate picture of hearing loss prevalence in a given area, which could be a country or an area within the country (e.g. district or state);
  • to provide an overview of the most common probable causes of deafness and hearing loss in the study area;
  • assess global and regional prevalence and trends

 

Using this survey handbook for data collection will help to ensure comparability of data collected through studies conducted in different countries and by different investigators. This will facilitate the estimation of global prevalence and the examination of hearing loss trends over time.

Protection and COVID-19

GLOBAL PROTECTION CLUSTER
2020

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The Global Protection Cluster (GPC) and its field operations are working closely with partners and governments to ensure the inclusion of those in need of protection as a result of conflict, disasters and climate change in national and local COVID-19 preparedness, prevention and response activities. This page shares protection-related information and resources on COVID-19, including examples of operational tools produced by field clusters.

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities. (Spotlight on adequate standard of living and social protection)

ADAMS, Lisa
2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The thematic focus of this guideline is on an adequate standard of living and social protection.

 

The guideline has three main parts:

  • Introduction and overview
  • Assessment tool to evaluate where your country or sub-national region is in terms of implementation of CRPD Article 28
  • Advocacy strategies to support implementation of CRPD Article 28 within the SDGs

 

The guideline also includes Annexes with further tools, resources and good practice case studies

Promoting employment opportunities for people with disabilities: Quota Schemes (Vol. 2)

INTERNATIONAL LABOUR ORGANISATION (ILO)
December 2019

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Employment quotas represent one of the most frequently used policy measures to promote work opportunities for persons with disabilities. Slightly over 100 countries around the world currently provide for employment quotas in their national legislation. While some countries have had employment quotas for many decades, others have introduced them recently, revised them or are planning to introduce them. There is no standard approach.

 

The previous publication (Volume 1) summarizes published information on quota schemes, to highlight elements of existing systems that are effective in promoting employment opportunities and making recommendations for approaches to take in introducing new systems or revising existing systems. In this document (Volume 2), an overview is provided of quota schemes by country and the extent to which quota schemes are in place alongside anti-discrimination legislation.

 

 

Global Disability Summit: One Year On – accountability report 2019

EQUAL INTERNATIONAL
September 2019

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This first accountability report, one year on from the Global Disability Summit 2018, presents independent analysis of the 171 sets of commitments made by governments and organisations at the Summit. It also sets out the results of a self-reporting survey completed by Summit participants, updating on progress made against their commitments so far.

 

The wider impact of the summit is discussed.

 

The results of the first GDS18 self-reporting survey demonstrate that significant progress has been made on implementation of the 968 Summit commitments. Work is reported to be underway on 74% of the commitments and 10% are reported as already completed, contributing towards an improved and increased visibility of disability inclusion within development and humanitarian action.

 

Appendix 2 gives country level case studies: Case study developed by Users and Survivors of Psychiatry Kenya; Case Study developed by the National Federation of the Disabled Nepal (NFDN); and Case Study developed by I Am a Human, Jordan

 

Making visible the invisible: Why disability-disaggregated data is vital to “Leave No-One Behind”

ABUALGHAIB, Ola
GROCE, Nora
SIMEU, Natalie
CAREW, Mark T
MONT, Daniel
May 2019

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It is commonly assumed that there is a lack of disability data, and development actors tend to attribute lack of data as the reason for failing to proactively plan for the inclusion of people with disabilities within their programming. However, it is an incorrect assumption that there is a lack of disability data. There is now a growing amount of disability data available. Disability, however, is a notoriously complex phenomenon, with definitions of disability varying across contexts, as well as variations in methodologies that are employed to measure it. Therefore, the body of disability data that does exist is not comprehensive, is often of low quality, and is lacking in comparability. The need for comprehensive, high quality disability data is an urgent priority bringing together a number of disability actors, with a concerted response underway. We argue here that enough data does exist and can be easily disaggregated as demonstrated by Leonard Cheshire’s Disability Data Portal and other studies using the Washington Group Question Sets developed by the Washington Group on Disability Statistics. Disaggregated data can improve planning and budgeting for reasonable accommodation to realise the human rights of people with disabilities

 

Sustainability 2019, 11(11), 3091

https://doi.org/10.3390/su11113091

Using the Washington Group Questions in humanitarian action (learning toolkit on disability data collection)

January 2019

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Humanity & Inclusion has created a learning toolkit to improve the collection of quality data on persons with disabilities and improve its use by humanitarian organisations.

 

Until now, existing guidance on the Washington Group Questions (WGQs) has been specific to national data collection efforts on persons with disabilities. To address the lack of guidance for humanitarian actors, Humanity & Inclusion (HI) is launching a learning toolkit on collecting data in humanitarian action, which includes an e-learning, a training pack for enumerators and various supporting resources that can all be found on the HI website.

 

Gathering evidence on the use of the WGQs in humanitarian action:

To respond to the need to collect, analyse and use data on persons with disabilities in humanitarian action, HI has been implementing a project, funded by the UK Department for International Development, to test and assess the use of the WGQs in humanitarian action. An action-research was carried out with over 30 humanitarian partners in Jordan, the Democratic Republic of Congo and the Philippines, with the evidence used to develop learning materials.

 

Development of a learning toolkit for humanitarian actors:

In addition to the findings of the action-research, HI gathered inputs from over 30 humanitarian organisations working in 22 countries to inform the design of the learning toolkit. Specific focus was given to the development of open source materials that would be accessible with screen readers, on mobile phones, and in hard to reach locations. The content was then informed by selected subject matter experts in inclusive humanitarian action and data collection.

 

What is included in the toolkit?

An e-learning on Collecting Data for the Inclusion of Persons with Disabilities in Humanitarian Action – The Application of the WGQs providing an entry point for humanitarian actors who would like to understand how to plan for and use the WGQs.

A Training Pack for enumerators giving guidance, session plans and activities to deliver training on using the WGQs (developed in collaboration with RedR UK).

Supporting resources providing practical guidance on the application of the WGQs in humanitarian contexts.

 

Who is this for?

The toolkit is tailored to a full range of humanitarian actors who would like to understand how to use the WGQs in their own work and organisations. The content has also been designed to provide technical guidance for programme and technical staff: with a practical focus on different topics relevant for the use of the WGQs –from the human rights based approach that underpins them, to their planning, use and the analysis of the data produced.

 

Where is the Toolkit available?

The e-learning is available now on disasterready.com and on Kayaconnect.org (accessible for mobile phones and tablets). Organisations interested in hosting the e-learning are welcome to contact the project team members. Toolkit resources and more information about the project are available for download in the project webpage.

Older people’s perceptions of health and wellbeing in rapidly ageing low- and middle-income countries

ALBONE, Rachel
2019

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This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.

This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.

 

 

 

Disability data collection: A summary review of the use of the Washington Group Questions by development and humanitarian actors

QUIGLEY, Nolan
et al
October 2018

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The Washington Group Questions on Disability are rapidly emerging as the preferred data collection methodology by the global community for national data collection efforts on disability. However, more and more development and humanitarian actors are now using the methodology in their own data collection efforts. This is beyond the original purpose of the questions, which was to generate usable data for governments. Leonard Cheshire and Humanity & Inclusion, two international charities focussed on disability and inclusion, have worked together to share learnings of recent research studies. These studies aim to understand how the Washington Group Questions (WGQ) have been used by development and humanitarian actors and the impact of using the methodology. This summary report outlines the key findings, analysis and conclusions about the application of the Washington Group Questions in a range of contexts. The report concludes with a number of recommendations for different stakeholders.

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

SKEMPES, Dimitrios
et al
October 2018

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The process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities is described.  A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.

 

Globalization and Health (2018) 14:96
https://doi.org/10.1186/s12992-018-0410-5

2030 Agenda for sustainable development: Selected SDG indicators disaggregated by disability status

WASHINGTON GROUP ON DISABILITY STATISTICS
October 2018

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In light of the importance of disability data collection and the disaggregation of Sustainable Development Goal (SDG) outcome indicators by disability status, the Washington Group on Disability Statistics (WG) undertook an exercise to review, among WG member countries, the extent to which data on SDG indicators currently available can be disaggregated by disability status. Requests for disaggregated SDG data for 13 selected indicators were sent to 146 member countries. 48 countries responded and 39 provided data. Response data is tabulated and discussed.

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Improving educational outcomes for people with disabilities in low and middle-income countries: why does it matter and what works?

KUPER, Hannah
SARAN, Ashrita
WHITE, Howard
July 2018

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The studies included in this Rapid Evidence Assessment (REA) are taken from the Disability Evidence and Gap Map (EGM) prepared by the Campbell Collaboration for the UK Department for International Development (DFID) under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. Qualitative studies, process evaluations, and non-impact evaluations (e.g. crosssectional surveys) were not eligible for inclusion. Quality grading was applied to the literature, so that assessment could be made of where there was strong evidence and where evidence was limited or missing. The studies were grouped by education sub-outcomes related to different stages in education across the life course; that is: early intervention, primary education, secondary education, non-formal education, and lifelong learning. 

 

There were 24 eligible individual studies, including studies conducted in the Middle East (10), Asia (7), and Africa (5), one from Latin America, as well as one multicountry study

The disability data portal

July 2018

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The Disability Data Portal provides a snapshot of the data globally available on people with disabilities in 40 countries. The portal also identifies where there are gaps in the current body of data. 

The portal was designed for the Global Disability Summit, held on 24 July 2018, and focusses on data relating to four thematic areas: inclusive education, stigma and discrimination, technology and innovation, and economic empowerment. 

The portal presents key development indicators relevant to the Summit themes, mostly drawn from the Sustainable Development Goals (SDGs), along with others relevant to the UN Convention on the Rights of Persons with Disabilities (CRPD)

Education and disability: Analysis of data from 49 countries

UNESCO
March 2018

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Persons with a disability are among the population groups most likely to suffer from exclusion from education but data that permit an analysis of the links between disability and education remain scarce. This paper examines educational disparities linked to disability based on data from 49 countries and territories for five education indicators:

● Proportion of 15- to 29-year-olds who ever attended school

● Out-of-school rate (primary school age, lower secondary school age)

● Completion rate (primary education, lower secondary education)

● Mean years of schooling of the population 25 years and older

● Adult literacy rate (population 15 years and older)

 

The education indicators were calculated with data from three sources, collected between 2005 and 2015: Demographic and Health Surveys (DHS) sponsored by USAID, School-to-Work Transition Surveys (SWTS) by ILO, and population census data compiled by IPUMS-International. Comparability of the data across countries is limited because only some of the surveys and censuses used questions developed by the Washington Group on Disability Statistics to identify persons with a disability. The accuracy of the indicator estimates is also affected by sampling and non-sampling errors in the data, the small sample size of many of the surveys that were analysed, and the relatively small proportion of persons with disabilities in each country’s population. Moreover, because of the scarcity of national data, it is currently not possible to generate statistics on the status of persons with disabilities with regard to education that are regionally or globally representative.

Information Paper No.49

 

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