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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.

Washington Group presentation

LOEB, Mitchell
2015

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A brief history of the Washington Group on Disability Statistics and their development of standard questions for the collection of statistics on disability worldwide is presented. A short set of 6 questions was originally developed and an extended set of 30-35 was finalised in 2009. Two modules have been developed in partnership with UNICEF for children: one for 2-4 year olds and one for 5-17 year olds.  A module concerned with inclusive education has also been developed

Washington Group approach

LOEB, Mitchell
2015

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The general approach to the collection of statistics on disability by the Washington Group on Disability Statistics is outlined. The group uses the social model of disability, looking at what in the environment makes it difficult to participate. They use neutral language, asking about difficulties rather than disabilities and consider there to be a spectrum of disabilities (mild-severe)  

Short set of questions on disability: presentation

LOEB, Mitchell
2015

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An introduction to the set of 6 questions devised by the Washington Group on Disability Statistics to collect statistics on disability is given. The short set of questions was designed primarily for a census. It has one question for each of 6 domains of functioning: vision, hearing, mobility, communication, self care and cognition. There are 4 categories (no difficulty-cannot do). The questions were validated by testing in various countries. 

Short set of questions on disability: data collection

LOEB, Mitchell
2015

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Recommendations for data collection of the short set of 6 questions devised by the Washington Group for Disability Statistics are given. The questions are phrased to ask whether the subject has difficulty with any of the domains of functioning. They have been field validated. It is recommended that the questions are presented without initial screening questions, that the enumerators are well trained and that the translations from the original English are appropriate. Four domains are highlighted from the 6 if required by space or time. 

Washington Group tools: methodology issues

LOEB, Mitchell
2015

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The process of devising the short set of six questions by the Washington Group on Disability Statistics and recommendations for their use are discussed. The questions were cognitively tested to determine patterns of interpretation and out of scope patterns. Translations were made to give feasible language to get to the same concepts. Cognitive testing was then repeated to examine cross national comparability. Field testing of 1000 people followed. The importance of enumerator training and of using the exact questions and response categories is emphasised. 

Advancing human rights : update on global foundation grantmaking : key findings

LAWRENCE, Steven
et al
2015

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This paper analyses the current (as of 2012) state of global human rights funding. Through the use of tables, graphs and other methods of data presentation, the International Human Rights Funders Group​ (IHRFG) outline the largest grants foundations, where and how the money is spent by these foundations, and the causes which these funds are spent on

Key findings

FOUNDATION CENTER
INTERNATIONAL HUMAN RIGHTS FUNDERS GROUP
2015

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A webpage from the Foundation Center, which gives hyperlinked access to the funding profiles of various international causes such as disability, access to justice, and gender equality. In addition there are links to the annual Key Findings on Global Foundation Grantmaking reports published by the Center 

The challenges of disability in Pakistan : listening to the voices of mothers

ALI, Rabia
RAFIQUE, Sana
November 2015

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“This study was conducted with the aim to explore the experiences of mothers in dealing with children having disabilities in Rawalpindi, Pakistan. Through random sampling method 154 mothers of physically handicapped children studying in pre-schools and primary schools were selected as respondents…The data highlights that the disability of the children had been unexpected for all the mothers who participated in this research. The mothers reported to have been shocked (56%) and apprehended about the future of the children (41%)… The data demonstrates that measures taken by mothers to facilitate their children included seeking help from internet and engaging with support groups and friends”

European Scientific Journal, Vol.11

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’

Injuries, death, and disability associated with 11 years of conflict in Baghdad, Iraq : a randomized household cluster survey

LAFTA, Riyadh
et al
August 2015

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“The objective of this study was to characterize injuries, deaths, and disabilities arising during 11 years of conflict in Baghdad.” The quantitative study shows the methodology used in the collection of data, the findings discovered through evaluation of the data gathered, and interpretation of how to best use those findings to serve specific populations”

 

 PLOS ONE, 10(8)

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

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)

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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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

Living with disability and disasters : UNISDR 2013 survey on living with disabilities and disasters : key findings

UNITED NATIONS OFFICE FOR DISASTER RISK REDUCTION (UNISDR)
2014

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This report discusses "the results of the first-ever UN global survey of persons living with disabilities (PWDs) on how they cope with disasters, illustrates why they die, or are injured, in disproportionate numbers in disasters. Survey responses from 5,717 persons from all over the world reveal that persons living with disabilities are rarely consulted about their needs in potential disaster situations." The report concludes with a number of recommendations for how to develop disaster risk reduction practises that include people with disabilities

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

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 

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