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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

Association of anxiety and depression with physical and sensory functional difficulties in adults in five population-based surveys in low and middle-income countries

WALLACE, Sarah
MACTAGGART, Islay
MORGON BANKS, Lena
POLACK, Sarah
KUPER, Hannah
June 2020

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The aim of this study was to assess the association between anxiety and depression with physical and sensory functional difficulties, among adults living in five low and middle-income countries (LMICs).

A secondary data analysis was undertaken using population-based disability survey data from five LMICs, including two national surveys (Guatemala, Maldives) and 3 regional/district surveys (Nepal, India, Cameroon). 19,337 participants were sampled in total (range 1,617–7,604 in individual studies). Anxiety, depression, and physical and sensory functional difficulties were assessed using the Washington Group Extended Question Set on Functioning. Age-sex adjusted logistic regression analyses were undertaken to assess the association of anxiety and depression with hearing, visual or mobility functional difficulties.

The findings demonstrated an increased adjusted odds of severe depression and severe anxiety among adults with mobility, hearing and visual functional difficulties in all settings (with ORs ranging from 2.0 to 14.2) except for in relation to hearing loss in India, the Maldives and Cameroon, where no clear association was found. For all settings and types of functional difficulties, there was a stronger association with severe anxiety and depression than with moderate. Both India and Cameroon had higher reported prevalences of physical and sensory functional difficulties compared with Nepal and Guatemala, and weaker associations with anxiety and depression

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.

Estimated prevalence of disability and developmental delay among pre‐school children in rural Malawi: Findings from ‘Tikule Limodzi’, a cross‐sectional survey

MURPHY, Rachel
et al
January 2020

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This study measured and compared the prevalence of disability and developmental delay among children attending preschool centres in rural Malawi. A cross-sectional survey was conducted in 48 preschool centres in Thyolodistrict, Malawi. Data were collected from parents or guardians of 20 children per centre. Disability was ascertained using the Washington Group/UNICEF Child Functioning Module. Child development was measured using the language and social domains of the Malawi Development Assessment Tool. A total of 960 children were enrolled; 935 (97.4%) children were assessed for disability and 933 (97.2%) for developmental delay; 100 (10.7%) children were identified as having a disability

 

Child Care Health Dev. 2020;46:187–194.
https://doi.org/10.1111/cch.12741

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-inclusive disaster recovery (Disaster Recovery Guidance Series)

ROBINSON, Alex
2020

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This guidance note provides action-oriented direction for government officials and decision-makers with responsibility for post-disaster recovery and reconstruction. The guidance will enable the development of disability-inclusive planning and programming across sectors and government. The note is expected to be of interest to wider government and non-government actors, including disabled persons’ organizations (DPOs), concerned with inclusive recovery.

Inclusion of persons with disabilities in humanitarian action. Case studies collection 2019. 39 examples of field practices, and learnings from 20 countries, for all phases of humanitarian response

PALMER, Tom
et al
December 2019

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Published at the same time as the Inter-Agency Standing Committee (IASC) Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action, this report aims to support their uptake and promote learning by example. This report presents 39 short case studies on inclusive practices for persons with disabilities in humanitarian action and disaster risk reduction (DRR). It is designed for humanitarian stakeholders with limited experience of working with and for persons with disabilities, as well as for organizations of persons with disabilities (OPDs) planning to engage in humanitarian action and DRR. The report draws lessons from field practices, but does not provide technical guidance. The IASC Guidelines are the reference document to seek in-depth theoretical and technical information

 

The case studies focus on:

  • Inclusive disaster risk reduction and preparedness
  • Collecting and using disability disaggregated data for assessments and programming.
  • Participation of persons with disabilities and their representative organizations in humanitarian response and recovery
  • Removing barriers to access humanitarian assistance and protection.
  • Influencing coordination mechanisms and resource mobilization to be inclusive

 

The evidence presented in this report was identified in 2017-2018 through a desk review of publicly available reports and internal documents on projects implemented by CBM, HI and IDA members, as well as their partners and affiliate members. Field visits to Lebanon, Jordan, Kenya, Nepal, and the Philippines conducted in 2018 also informed the case-study collection and documentation

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

 

Disability & inclusion survey, Wau PoC AA

INSTITUTE OF MIGRATION (IOM)
HUMANITY & INCLUSION
CCCM CLUSTER
October 2019

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The International Organization for Migration's Displacement Tracking Matrix (10M DTM) and Humanity & Inclusion (HI) joined efforts to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Wau Protection of Civilian Adjacent Area site (PoC AA or PoC site). The study, based on data collected in February 2019, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the PoC site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disabilities in accessing humanitarian services across sectors. It also seeks to empower persons with disability living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions.

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

Quality of Life of Persons with Disabilities in Southern Nations, Nationalities, and Peoples’ Region, Ethiopia

BAART, Judith
SCHIPPERS, Alice
META, Mamush
2019

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Purpose: There is very little demographic or prevalence data  regarding persons with disabilities in Ethiopia, let alone data on more in-depth factors such as access to services or quality of life. This study aimed to find out about the current quality of life of persons with disabilities in Southern Nations, Nationalities, and Peoples’ Region (SNNPR), Ethiopia.

 

Method: The WHO CBR Indicator Survey was used to measure quality of life, and the Washington Group Short Set was included to allow disaggregation of the data by different types of functional limitations. Interviews were conducted with 966 persons with disabilities in 10 towns in SNNPR. The majority of data collectors were persons with disabilities themselves.

 

Results: People with disabilities who were surveyed generally regarded their health as good (65.9%). Very few had significant levels of education (16.5% were completing higher education). Only 6.7% were working for wages and 45.2% were reportedly working on their own account. Hardly any of them (2.9%) stated that their money was sufficient for their needs. Only a small group (38%) felt valued in their community. Just over half of the respondents (56.6%) were members of a Disabled Persons’ Organisation (DPO) or any other self-representing group.

 

Conclusion: Persons with disabilities scored relatively or extremely low in all areas of life measured with the CBR Indicator Survey (health, education, livelihood, social and empowerment). The survey will be repeated after a few years in the same communities to measure changes over time, and persons without disabilities will be included in order to draw comparisons.

 

Implications: Public and private organisations in SNNPR need to become more accessible and inclusive of persons with disabilities so as to improve their quality of life.

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

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.

Need to know guidance: Working with persons with disabilities in forced displacement

UNHCR
2019

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In situations of forced displacement, persons with disabilities have the same rights and basic needs as others and face the same challenges as other individuals. They also face particular protection risks such as heightened risk of violence, exploitation and abuse, as well as high levels of stigma.  Guidance is given concerning the application of an age, gender and diversity approach, to achieve protection, assistance and solutions. Example approaches are provided concerning: non discrimination; changing attitudes about disability and promoting respect for diversity; Improving identification and data collection; making all facilities physically accessible; ensuring accountability mechanisms are inclusive; preventing and responding to violence and abuse; and building links with organizations of persons with disabilities & other national and local actors.

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