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The definition of disability and disability related data collection and analyses - Applying the IASC Guidelines in the northwest Syria humanitarian response

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
February 2021

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Action by humanitarian partners to strengthen inclusion of persons with disabilities in the humanitarian response in an evidencebased manner remains highly needed – this note aims to support that effort by providing background and explanation on the definition of disability as well as on how to interpret and use data related to disability.

 

The note also provides elaboration on the Syria Protection Cluster (Turkey) recommended disability-related data collection methodology for humanitarian organizations and entities in northwest Syria. Thereby the note aims to stimulate and assist the broader humanitarian community in northwest Syria in adopting the Washington Group Short Set of Questions on Functioning, especially in relation to disability focused data collection and in understanding and utilizing assessment findings, specifically prevalence-rates of disability in northwest Syria.

 

For more elaborated description of the situation of persons with disability in northwest Syria and practical suggestions for humanitarians on enhancing inclusion of persons with disabilities in programming, this note is to be read in conjunction with the ITWG “Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria” brief report and recommendations.

 

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.

Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

Long-term outcomes for children with disability and severe acute malnutrition in Malawi

LELIJVELD, Natasha
GROCE, Nora
PATEL, Seema
NNENSA, Teresa
CHIMWEZI, Emmanuel
GLADSTONE, Melissa
MELLEWA, Macpherson
WELLS, Jonathon
SEAL, Andrew
KERAC, Marco
October 2020

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Severe acute malnutrition (SAM) and disability are major global health issues. Although they can cause and influence each other, data on their co-existence are sparse. This study aims to describe the prevalence and patterns of disability among a cohort of children with SAM.

A longitudinal cohort study in Malawi followed SAM survivors up to 7 years postdischarge. Clinical and anthropometric profiles were compared with sibling and community controls. Disability at original admission was identified clinically; at 7-year follow-up a standardised screening tool called ‘the Washington Group Questionnaire’ was used.

 

BMJ Global Health 2020;5:e002613

http://dx.doi.org/10.1136/bmjgh-2020-002613

When does disability begin? Identifying the age of onset

MONT, Daniel
October 2020

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Issues are discussed about adding to the Washington Group questions to collect information on the age of disability onset. Issues include:

  1. People may not remember the exact age
  2. The exact age may be difficult to determine
  3. People may have onsets of difficulties in different domains at different times

 

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Generating disability statistics: Models of disability measurement, history of disability statistics and the Washington Group Questions

Development Initiatives
September 2020

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This paper provides an overview of progress towards the creation of accurate and comparable disability statistics, the critical issues that impact on the measurement of disability, and discusses one of the most prominent international efforts to improve data on disabilities – the Washington Group on Disability Statistics.

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

Using the Washington Group tools to assess the impact of COVID-19 on persons with disability

WASHINGTON GROUP ON DISABILITY STATISTICS
June 2020

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Using the Washington Group (WG) tools to assess the impact of COVID-19 on persons with disability is described.

 

Guidance for the use of the WG question sets in telephone or web data collections is provided. Consideration is given to several possible issues when implementing these methods including: sample bias; telephone interviewing persons with hearing and communication difficulties; internet administration for persons with vision, cognition or other difficulties; and translation of survey questions for administration during the COVID-19 pandemic

 

Labour market date for persons with disabilities (i2i webinar)

EUROPEAN DEVELOPMENT FORUM
April 2020

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On April 22nd 2020, the European Disability Forum organised the fourth of a series of webinars about the Innovation to Inclusion project (also called i2i programme). 

Four speakers were invited to talk about Labour Market Data for persons with disabilities. After their presentation, there was some time for questions and answers.

 

  • Mark Carew (Leonard Cheshire) spoke briefly about i2i’s approach to disability data and how i2i supports a good quality collection of disability data.
  • Valentina Stoevska (Department of Statistics, International Labour Organisation) explained the objectives of the statistical data on the labour market characteristics of persons with disabilities. She talked about the use of Washington Group questions on the disability Labour Force Surveys. To conclude her presentation, Ms Stoevska briefly illustrated with some statistics the employment characteristics of persons with disabilities.
  • Robert Buluma (Governance, Peace and Security statistics of the Kenya National Bureau of Statistics) briefly provided some information on the development of a disability monograph.
  • Anderson Gitonga (United Disabled Persons of Kenya (UDPK)) spoke about the importance of the meaningful participation of persons with disabilities in data gathering and touched upon the technical working group that has been formed in Kenya.

Disability measurement in household surveys : A guidebook for designing household survey questionnaires (English). LSMS guidebook.

TIBERTO, Marco
COSTA, Valentina
January 2020

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This Guidebook supports the implementation of the Washington Group Short Set (WG-SS) – a set of questions designed to identify (in a census or survey format) people with a disability – in multi-topic household surveys, towards improving the collection of disaggregated disability data. The first section presents an overview of the disability definitions in the sociopsychological literature, exploring how disability is defined and who is considered disabled. The second section looks at three different methods for capturing disability in multi-topic household surveys: the Washington Group (WG) question sets, the World Health Organization (WHO) survey instruments for disabilities, and the Demographic and Health Surveys (DHS) module on disabilities. The third section presents the six core WG-SS functional domains, ‘seeing’, ‘hearing’, ‘walking’, ‘cognition’, ‘selfcare’, and ‘communication’, that are intended for the general population five years of age and above. Finally, the Guidebook offers a series of recommendations for ensuring the improvement of disability data collection in multi-topic household survey.

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.

Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne
LAMICHHANE, Kamal
NEUPANE, Shailes
November 2019

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Determinants of school achievement in Nepal among persons with and without disabilities as well as among each type of impairment were determined using data from a nationally representative disability inclusive survey collected in 2015.  The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2019.1691272

 

Prevalence of disability in Morocco: Results from a large-scale national survey

HAJJIOUI, Abderrazak
ABDA, Naiima
GUENOUNI, Rachid
NEJJARI, Chakib
FOURTASSI, Maryam
October 2019

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The aims of this study were to determine the prevalence of disability in the adult Moroccan population, and its distribution according to socio-demographic characteristics and geographical regions. A national survey was conducted in 2014, including a sample of 47,275 adult participants drawn from 16,044 households from urban and rural areas proportioned to population size. The sample’s socio-demographic characteristics were collected in face-to-face interviews. The data were then screened for disability using the Washington Group Short Set of Questions on Disability.

 


Journal of Rehabilitation Medicine. 2019 Oct 29;51(10):805-812.
 doi: 10.2340/16501977-2611

Disability prevalence-context matters: A descriptive community-based survey

MAART, Soraya
AMOSUN, Seyi
JELSMA, Jennifer
August 2019

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Background: There is increasing interest in the collection of globally comparable disability data. Context may influence not only the rates but also the nature of disability, thus locally collected data may be of greater use in service delivery planning than national surveys.

 

Objectives: The objective of this article was to explore the extent to which two areas, both under-resourced but geographically and socially distinct, differed in terms of the prevalence and patterns of disability.

 

Method: A cross-sectional descriptive survey design was utilised, using stratified cluster sampling in two under-resourced communities in the Western Cape, South Africa. Nyanga is an informal urban settlement in Cape Town and Oudtshoorn is a semi-rural town. The Washington Group Short Set of questions was used to identify persons with disabilities (PWD), and a self-developed questionnaire obtained socio-demographic information.

 

Results: The overall prevalence of disability was 9.7% (confidence intervals [CIs] 9.7–9.8) and the proportion of PWD was significantly different between the two sites (Chi-Sq = 129.5, p < 0.001). In the urban area, the prevalence rate of any disability was 13.1% (CIs 12.0–14.3) with 0.3% (CIs 0.1–0.6) reporting inability to perform any function at all. In contrast, the semi-rural community had a lower overall prevalence rate of 6.8% (CIs 6.0% – 7.8%) but a higher rate of those unable to perform any function: 1% (CIs 0.07–1.4). Disability was associated with gender, age, unemployment and lower income status in both areas.

 

Conclusion: Deprived areas tend to show higher disability prevalence rates than the National Census estimates. However, the discrepancy in prevalence and patterns of disability between the two under-resourced areas indicates the need for locally specific data when planning health interventions.

 

 

African Journal of Disability, Vol 8, 2019

Rapid assessment of avoidable blindness (RAAB) and disability and equity survey. Nampula, Mozambique

SIGHTSAVERS
July 2019

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This report describes the findings of a rapid assessment of avoidable blindness (RAAB) conducted in Muchinga Province, Zambia in 2017.

The prevalence of blindness was just over 4% and the major cause was cataract, followed by glaucoma. Only 37% of people who require cataract surgery have received it, meaning there is an urgent need to scale up access to cataract surgical services in the province.

In addition to the standard RAAB questionnaire, an additional two sets of questions were administered to the participants to understand their disability and socioeconomic status: the Washington Group Short Set of Questions on Disability (WGSS) and the Equity Tool (ET)

Disability inclusion helpdesk; evidence digest issue 1, June 2019

SDDirect
June 2019

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The Evidence Digest aims to capture knowledge emerging from Helpdesk activities in a systematic manner and disseminate findings. This short summary will:

Share information on and learnings from the Disability Inclusion Helpdesk over the last quarter, highlighting headline messages and implications for programmers and policymakers;
Share relevant information and learning from other DID outputs;
Provide relevant information on recent evidence, policy changes and events in the field of disability inclusion, and;
Raise awareness on how to access the Helpdesk and demonstrate its offer.

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

Access to social protection among people with disabilities: Mixed methods research from Tanahun, Nepal

BANKS, Lena
et al
April 2019

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This study explores participation of people with disabilities in social protection programmes, with Tanahun District of Nepal as the study setting. This research uses mixed methods to assess coverage (through direct survey), how coverage varies amongst people with disabilities (e.g. by gender, impairment type), as well as challenges and facilitators to enrolling in or using relevant social protection programmes. This research benefits from a population-based study design and from the use of the Washington Group question sets

 

The European Journal of Development Research (2019) 31:929–956

https://doi.org/10.1057/s41287-019-0194-3

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