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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

 

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.

Model disability survey of Afghanistan 2019

AKSEER SHINWARI, Nadia
AKSEER, Tabasum
KAMALA, Madhis
May 2020

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Led by The Asia Foundation (the Foundation) in Kabul, Afghanistan, the WHO’s and World Banks’ Model Disability Survey (MDS) was implemented in Afghanistan in 2019 to provide rigorous and current data for policy and action. Using an adapted MDS, the MDSA 2019 was designed and implemented to generate representative data at nationally and regionally representative levels.

 

A complex survey using multistage sampling was administered respectively to adult (18+ years) and child (2–17 years) populations; a total of 14,290 households were surveyed, representing 111,641 Afghans across the country. Separate survey tools were implemented for adults (157 questions) and children (53 questions). Three core tools were developed covering: 1) household characteristics; 2) adult disabilities (related to functioning, health conditions, personal assistance, assistive products and facilitators, health care utilization, well-being and empowerment); 3) child disabilities (related to functioning and health conditions)

Status of disability in Kenya: Statistics from the 2019 census

OWINE, Eastone
May 2020

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In August 2019 Kenya conducted its eighth Population and Housing Census. Data provided by the census is vital for the government, private sector and civil society to design and target disability-inclusive policies and programmes. Census data is also a critical input in the response to coronavirus, as it can support mapping of vulnerable communities and the distribution of funding to ensure public safety, health facilities, and social and economic protections for people with disabilities. In November 2019 and February 2020 a series of preliminary census reports were released by the Kenya National Bureau of Statistics (KNBS). These preliminary census reports provide summary tables of statistics drawn from the census data. An initial analysis of Kenya’s 2019 disability statistics using data sourced from these reports is presented

 

The 2019 census demonstrates the progress Kenya is making towards disability-inclusive data collection by integrating internationally comparable questions for identifying people with disabilities. This background paper provides a quantitative analysis of Kenya’s disability demographics, including disability prevalence rates at the national and subnational levels and by domain, and a critical appraisal of the factors that may have contributed to the results.

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.

The impacts of COVID-19 on people with disabilities: a rapid review. Disability Inclusion Helpdesk Query No: 35

MEANIE-DAVIS, Jessie
LEE, Harri
CORBY, Nick
April 2020

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There is currently very limited data and evidence on the impacts of COVID-19 on people with disabilities and pre-existing health conditions, with no disability-disaggregated data on mortality rates available in the public sphere. However, reports from the media, disability advocates and disabled peoples’ organisations (DPOs) point to several emerging impacts, including primary and secondary impacts including on health, education, food security and livelihoods.  Most of the available data is from high income countries (HICs) though reports from low- and middle-income countries (LMICs) are likely to emerge. Evidence was gathered by a rapid desk based review. Gaps are identified. 

 

The section concerned with lessons drawn from similar epidemics draws heavily on lessons learned from the Ebola outbreak in West Africa in 2014-2016, and touches on lessons from the Zika outbreak in 2015-2016 and the SARS pandemic in the early 2000s.10 It also touches briefly on SARS, MERS and H1N1 (swine flu). 

 

Primary and secondary impacts of COVID-19 on people with disabilities are reviewed.


People with disabilities are disproportionately impacted by COVID-19 not only because it can exacerbate underlying medical conditions, but because of attitudinal, environmental and institutional barriers to their participation in and benefit from the pandemic response. For example, inaccessible public health messaging and healthcare facilities, and stigma and discrimination.

No one left behind? Comparing poverty and deprivation between people with and without disabilities in the Maldives

BANKS, Lena Morgon
et al
March 2020

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This study estimates the prevalence of disability in the Maldives and compares indicators of poverty and living conditions between people with and without disabilities, using nationally-representative, population-based data (n = 5363). The prevalence of disability was estimated at 6.8%. Poverty and household living conditons, education, health, work and social participation were examined. Data were collected from July to August 2017 through a nationally-representative population-based survey with a nested case–control study

 

Sustainability 2020, 12, 2066 

https://doi.org/10.3390/su12052066

Accelerating Disability Inclusive Formal Employment in Bangladesh, Kenya, Nigeria, and Uganda: What are the Vital Ingredients?

WICKENDEN, Mary
THOMPSON, Stephen
MADER, Philip
BROWN, Simon
ROHWERDER, Brigitte
March 2020

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This Working Paper provides an overview of disability as a concept and relevant global treaties and statistics, including evidence of trends and complexities in promoting disability inclusive employment broadly and with some focus on formal employment specifically. We describe the current situation in each of the four focus countries, demonstrating the similarities and differences between them. We then discuss some promising interventions that have been tried, usually on a small scale, in diverse settings, and which may be applicable in our four focus countries (Bangladesh, Kenya, Nigeria, and Uganda). Finally, we present the potential interventions that will be trialled in the Inclusion Works programme, using an innovation-driven, adaptive management approach.

 

The Inclusion Works programme (2018–2022), funded by the UK Department for International Development, aims to improve employment rates for people with disabilities in Bangladesh, Kenya, Nigeria, and Uganda. 

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Disability data in developing countries: opportunities to support inclusion

WALTON, Dan
January 2020

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A blog explaining how data can be a powerful tool for understanding the challenges and opportunities faced by people with disabilities in developing countries, and for improving their welfare and access to relevant services. High-quality disability data, when accessible and used effectively, can help communities and their advocates, policymakers and local officials better understand and prioritise interventions that benefit people with disabilities. However, it is unclear what data is currently available to these stakeholders, and how it could be improved to better support the inclusion of people with disabilities.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Prevalence of trachoma in Pakistan: Results of 42 population-based prevalence surveys from the Global Trachoma Mapping Project

KHAN, A A
et al
January 2020

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Previous phases of trachoma mapping in Pakistan completed baseline surveys in 38 districts. To help guide national trachoma elimination planning, this work was carried out to estimate trachoma prevalence in 43 suspected-endemic evaluation units (EUs) of 15 further districts. A population-based trachoma prevalence survey was planned for each EU. Two-stage cluster sampling was employed, using the systems and approaches of the Global Trachoma Mapping Project.

 

Ophthalmic Epidemiol. 2020 Apr;27(2):155-164

doi: 10.1080/09286586.2019.1708120

Poverty and social exclusion of persons with disabilities (2020) - European Human Rights Report Issue 4

HAMMERSLEY, Hayden
2020

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The extent of the effect of poverty and social exclusion on persons with disabilities in the EU was examined

The report shows how, in all EU countries, persons with disabilities are more likely to be poor and unemployed than persons without disabilities. It presents actions that the EU, it's Member States and other European Countries should take to improve the situation.

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.

How well is aid targeting disability?

WALTON, Dan
December 2019

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A blog explaining and categorising how international aid has been allocated to projects in a primary or a secondary disability component. It further classifies disability-relevant projects according to their particular focus on one or more of two areas:

Inclusion and empowerment projects have a focus on ensuring people with disabilities are included in benefits on an equal basis to people without disabilities.
Economic empowerment projects are a subset of inclusion and empowerment projects that have the deliberate purpose of improving employment opportunities and rights for people with disabilities.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

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.

Disability at a Glance 2019: Investing in accessibility in Asia and the Pacific — Strategic approaches to achieving disability-inclusive sustainable development

TATA, Srinivas
et al
December 2019

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This report lays out foundational concepts and terminologies related to disability and accessibility, and outlines the tools and approaches for successful investment in accessibility. Furthermore, it identifies drivers and added values of investment, and analyses the status of disability-inclusive development and accessibility investment across Asia and the Pacific. Finally, it provides recommendations to governments across key areas of focus to ensure that societies are built to be sustainable and inclusive.

Case studies from Australia, the Republic of Korea and India are presented.

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

 

Social protection and disability in Zambia

KIDD, Stephen
WAPLING, Lorraine
KABARE, Krystle
October 2019

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This report presents findings from a short study in Zambia to examine its social protection system and programmes and identifies the challenges faced by persons with disabilities in accessing them. The study was undertaken by a visit to Zambia between 31st October – 4th November 2016 during which a range of interviews and focus group discussions were undertaken. The study was supported by a review of the literature and some limited analysis of administrative data.

Topics presented in the report include:

  • the broader context of Zambia particularly around issues of education, health and consumption dynamics
  • the national population of persons with disabilities
  • key challenges faced by persons with disabilities
  • the legislative and policy framework on disability in Zambia
  • the governance of social protection and support for persons with disabilities
  • the disability classification system and an overview of the social protection system
  • the evolution of the Social Cash Transfer and access to the scheme by persons with disabilities 

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

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