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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.

Study on explosive hazard victim reporting and data management processes in Iraq

NIJHOLT, Sarah
April 2019

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Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:

  • Understand what explosive hazard victim reporting and data management processes exist in Iraq;
  • Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
  • Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
  • Understand the successes, shortfalls, and challenges in data collection and information sharing;
  • Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
  • Identify if and how the data on victims is being collected and used by government authorities and the international fora.

 

Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.

More at risk: how older people are excluded in humanitarian data

TANYANG, Gaynor
VENTURES, Lumina
2019

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This report evaluates existing policies and practices on how older people have been excluded from data in disaster preparedness and humanitarian responses in Bangladesh, India, Nepal, Pakistan, Sri Lanka, Cambodia, Indonesia, Myanmar, the Philippines, Thailand and Vietnam.

In order to evaluate existing policies and practices in the collection of inclusion data, the research employed two main methods: a review of documents and a survey. The review of documents was conducted in three stages: a global literature review, followed by a policy review and a practice review. The survey analysed the responses of 72 respondents from 10 countries .

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.

Realisation of sustainable development goals by, for and with persons with disabilities: UN flagship report on disability and development 2018

UNITED NATIONS DEPARTMENT FOR ECONOMIC AND SOCIAL AFFAIRS (UNDESA)
December 2018

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This report represents the first UN systemwide effort to examine disability and the Sustainable Development Goals (SDGs) of the 2030 Agenda for Sustainable Development at the global level. The report reviews data, policies and programmes and identifies good practices; and uses the evidence it reviewed to outline recommended actions to promote the realization of the SDGs for persons with disabilities. Over 200 experts from UN agencies and International Financial Institutions, Member States and civil society, including research institutions and organizations of persons with disabilities, contributed to this report. The report covers new areas for which no global research was previously available, for example, the role of access to energy to enable persons with disabilities to use assistive technology. It also contains the first global compilation and analysis of internationally comparable data using the Washington Group on Disability Statistics short set of questions. Reviews of legislation from 193 UN Member States were conducted and analysed for this report to highlight good practices and to assess the current status of discriminatory laws on voting, election for office, right to marry and others

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.

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

SKEMPES, Dimitrios
et al
October 2018

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The process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities is described.  A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.

 

Globalization and Health (2018) 14:96
https://doi.org/10.1186/s12992-018-0410-5

2030 Agenda for sustainable development: Selected SDG indicators disaggregated by disability status

WASHINGTON GROUP ON DISABILITY STATISTICS
October 2018

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In light of the importance of disability data collection and the disaggregation of Sustainable Development Goal (SDG) outcome indicators by disability status, the Washington Group on Disability Statistics (WG) undertook an exercise to review, among WG member countries, the extent to which data on SDG indicators currently available can be disaggregated by disability status. Requests for disaggregated SDG data for 13 selected indicators were sent to 146 member countries. 48 countries responded and 39 provided data. Response data is tabulated and discussed.

Measuring disability using the Washington Group questions

August 2018

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The Washington Group was set up by the United Nations Statistical Commission. It works with countries to produce better information about people with disabilities. The Washington Group has developed useful questions for countries to use to help find out whether a person has a disability, and to help collect data and information on what the differences are between people with disabilities and people without disabilities.

The disability data portal

July 2018

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The Disability Data Portal provides a snapshot of the data globally available on people with disabilities in 40 countries. The portal also identifies where there are gaps in the current body of data. 

The portal was designed for the Global Disability Summit, held on 24 July 2018, and focusses on data relating to four thematic areas: inclusive education, stigma and discrimination, technology and innovation, and economic empowerment. 

The portal presents key development indicators relevant to the Summit themes, mostly drawn from the Sustainable Development Goals (SDGs), along with others relevant to the UN Convention on the Rights of Persons with Disabilities (CRPD)

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Jordan report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerning with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 6,381 persons of randomly sampled 1,159 households in Azraq and Zaatari camps and Irbid between October 2017 and January 2018. Twenty-five Key Informant Interviews (KIIs) and 3 Focus Group Discussions (FGDs) were also conducted between November 2017 and January 2018 to elicit deeper insights on the educational situation of children with and without disabilities

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Lebanon report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerned with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 2,495 persons of randomly sampled 506 households in the urban setting in Bar Elias as well as Informal Tented Settlements (ITS) in Bar Elias and Arsal in December 2017. Fourteen Key Informant Interviews (KII) were also conducted in December 2017 to elicit deeper insights on the educational situation of children with and without disabilities.

Labour market inclusion of people with disabilities: Paper presented at the 1st Meeting of the G20 Employment Working Group

INTERNATIONAL LABOUR ORGANISATION (ILO)
ORGANISATION FOR ECONOMIC COOPERATION AND DEVELOPMENT (OECD)
February 2018

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A common understanding of how to approach the employment of persons with disabilities in a way that respects social justice, human rights and decent work as a key element of more inclusive economies and societies is sought. Having the employment of persons with disabilities on the G20 agenda is also a reflection of the increased attention to the rights of persons with disabilities both at a national as well as at an international level. The contribution focuses on one particular group of people with disabilities, namely those who may have been born with disabilities or may have developed some during their lives, but either way have remaining work capacities and are at working age. 

Employment-to-population ratio statistics for persons with and without disabilities are provided for some of the G20 countries. Economic and social determinants of low employment rates of people with disabilities are discussed.

 

Policies across G20 countries for the labour market inclusion of persons with disabilities are discussed

  • demand side - promoting disability inclusion within the private and public sector
  • supply side - ensuring that persons with disabilities have the skills as demanded by the labour market
  • making the environment more enabling 
  • mental health as a special challenge
  • measurement and quality data to inform evidence-based policies

 

Disability measurement and the Washington Group on Disability Statistics : NGO training agenda

WASHINGTON GROUP ON DISABILITY STATISTICS
June 2017

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Four videos are provided which are live recording of an Introductory training for Non-Government Organisations on disability measurement

Session 1 Video: Overview of Disability Measurement and the Washington Group Short Set (1h 35m)

Session 2 Video: Collecting Disability Data (1h 42m)

Session 3 Video: The Importance & Feasibility of Disaggregation by Disability Status (57m)

Session 4 Video: The WG/UNICEF Module on Child Functioning (1h 14m)

 

A new way to measure child functioning

UNICEF
WASHINGTON GROUP
May 2017

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"In recognizing the need for a set of questions that would produce internationally comparable data on children, the Washington Group formed a subgroup in 2009 that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011.

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The Washington Group/UNICEF Module on Child Functioning, finalized in 2016, covers children between 2 and 17 years of age and assesses functional difficulties in different domains including hearing, vision, communication/comprehension, learning, mobility and emotions. To better reflect the degree of functional difficulty, each area is assessed against a rating scale. The purpose is to identify the subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited participation in an unaccommodating environment. The set of questions is intended for use in national household surveys and censuses"

The module is being translated into multiple languages. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.

Guatemala National Disability Study ENDIS 2016 Report

DONICIO Carlos
GRECH Shaun
Islay MACTAGGART
Jonathan NABER
Dr Ana Rafaela SALAZAR DE BARRIOS
Gonna ROTA,
Sarah POLLACK
April 2017

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The Guatemala National Disability Study (ENDIS 2016) was undertaken to address a need for up to date reliable data on disability in Guatemala.

Through a population based survey:

* To estimate the national disability prevalence among adults and children in Guatemala, and to provide regional estimates for 5 broad regions

* To disaggregate the prevalence of disability in Guatemala by age, sex, type of functional limitation and socio-economic status

* To explore the impact of disability on: poverty, quality of life, participation, health and opportunities to go to school and to work amongst children and adults respectively

Through a qualitative study:

* To explore cultural, ideological, and social interpretations and responses to disability; provide insight into the disability and poverty relationship; and examine social, political, and economic dimensions operating within this relationship.

HIV/AIDS knowledge, attitudes and behaviour of persons with and without disabilities from the Uganda Demographic and Health Survey 2011: Differential access to HIV/AIDS information and services

ABIMANYI-OCHOM, Juie
MANNAN, Hasheem
GROCE, Nora
McVEIGH, Joanne
April 2017

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Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41–0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18–1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda’s AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

PLoS ONE 12(4): e0174877
https://doi.org/10.1371/journal.pone.0174877

Counting disability: emerging consensus on the Washington Group questionnaire

GROCE, Nora
MONT, Daniel
2017

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The issuing of a statement by the Interagency and Expert Group on Sustainable Development Goal (SDG) Indicators in Geneva, a group of leading UN agencies, civil society actors, and independent experts strongly supporting the Washington Group on Disability Statistics’ Short Set of Questions (WGSS) is noted and a short explanation of the questions is provided.

 

The Lancet Global Health VOLUME 5, ISSUE 7, PE649-E650, JULY 01, 2017

https://doi.org/10.1016/S2214-109X(17)30207-3

Autism spectrum disorders

WORLD HEALTH ORGANISATION
April 2017

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This fact sheet provides key facts and an overview about autism spectrum disorders. Associated epidemiology, causes, assessment and management, social and economic impacts are briefly covered. The human rights of people with ASD are discussed and the WHO Resolution on autism spectrum disorders (WHA67.8) is introduced.

Disability in the EU SDGs indicators: Ensuring that no one is left behind

EUROPEAN DISABILITY FORUM (EDF)
March 2017

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The European Disability Forum (EDF) presents this position paper in response to the draft report of EUROSTAT on the European Union (EU) – Sustainable Development Goals (SDGs) indicators circulated on 21st March to civil society organisations. The 2030 Agenda adopted by the United Nations in New York has 11 references to persons with disabilities and the SDGs have 19 references, including the technical ask to disaggregate data by disability.

However, EUROSTAT has overlooked persons with disabilities in its latest indicators draft. Now there is an opportunity to ensure this gap is filled and for the EU to include disability related indicators in line with the 2030 Agenda and the UN Convention on the Rights of persons with disabilities (UN CRPD).

The European Commission (EC) has a legal obligation under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) to promote, protect, and ensure the full enjoyment of human rights by persons with disabilities. The EC is also legally bound to ensure that persons with disabilities enjoy full equality under the law. EUROSTAT has also the technical capacity to measure the inclusion of persons with disabilities in its approach to the SDGs, and in this paper we outline why and how this could be done. Here are four guiding recommendations: 

  • The systematic disaggregation of data by disability
  • The insertion of the SDGs disability indicators in the EU SDGs indicators
  • The provision of leadership from the EU in the application of the obligations under the UN CRPD in the context of the SDGs 
  • The participation of persons with disabilities throughout the process

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