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Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
English
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.

Covid-19: Violence risk and loss of income among persons with disabilities

ADD International
English
October 2020

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This report presents findings from telephone interviews with 87 members from Disabled People’s Organisation (DPO) partners and 10 DPO/Self-Help Group (SHG) leaders from organisations with 1,998 members in 10 districts across 7 provinces of Cambodia, to ask about the impact of the COVID-19 pandemic on persons with disabilities.

 

Three patterns emerge from these interviews: there is a pattern of compounding vulnerability to violence; a pattern of significant livelihood loss that is felt differently by disability type and gender; and a link between livelihood loss and pronounced increase in economic and psychological violence against women and girls with disabilities.

 

Evidence from these interviews suggests that, during the COVID-19 pandemic, some women with disabilities are at increased risk of violence and suffering a dramatic loss in household earnings. Reported violence risk increase is mostly psychological and economic, higher among older respondents and most pronounced among those who already experienced medium to high risk of violence before COVID-19.

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
English
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
English
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
English
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"

Making research disability-inclusive – reflections from Nigeria

MOHAMMED, Anu
English
September 2020

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Improvements made to inclusivity of disability research in Nigeria following participation in Inclusive Futures and training in the use of the Washington Group Short Questions are described. Applications of these lessons to recent research on COVID-19 in Nigeria is reported.

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

MACTAGGART, Islay
KUPER, Hannah
English
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
English
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

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

WASHINGTON GROUP ON DISABILITY STATISTICS
English
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

 

Status of disability in Kenya: Statistics from the 2019 census

OWINE, Eastone
English
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
English
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
English
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
English
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
English
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
English
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
English
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
English
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
English
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
English
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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