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Disability data in developing countries: opportunities to support inclusion

Dan Walton
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.

How well is aid targeting disability?

Dan Walton
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.

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 

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Global Disability Summit: One Year On – accountability report 2019

EQUAL INTERNATIONAL
September 2019

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This first accountability report, one year on from the Global Disability Summit 2018, presents independent analysis of the 171 sets of commitments made by governments and organisations at the Summit. It also sets out the results of a self-reporting survey completed by Summit participants, updating on progress made against their commitments so far.

 

The wider impact of the summit is discussed.

 

The results of the first GDS18 self-reporting survey demonstrate that significant progress has been made on implementation of the 968 Summit commitments. Work is reported to be underway on 74% of the commitments and 10% are reported as already completed, contributing towards an improved and increased visibility of disability inclusion within development and humanitarian action.

 

Appendix 2 gives country level case studies: Case study developed by Users and Survivors of Psychiatry Kenya; Case Study developed by the National Federation of the Disabled Nepal (NFDN); and Case Study developed by I Am a Human, Jordan

 

The missing billion - Access to health services for 1 billion people with disabilities

KUPER, Hannah
HEYDT, Phyllis
July 2019

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One billion people around the world live with disabilities. This report makes the case that they are being “left behind” in the global community’s work on health. This lack of access not only violates the rights of people with disabilities under international law, but UHC (Universal Health Care) and SDG 3 cannot be attained without better health services for the one billion people with disabilities. 

Health and healthcare are critical issues for people with disabilities. People with disabilities often need specialized medical care related to the underlying health condition or impairment (e.g., physiotherapy, hearing aids). They also need general healthcare services like anyone else (e.g., vaccinations, antenatal care). On average, those with disabilities are more vulnerable to poor health, because of their higher levels of poverty and exclusion, and through secondary conditions and co-morbidities. People with disabilities therefore may require higher levels of prevention, diagnosis, and treatment services. However, health services are often lower quality, not affordable, and inaccessible for people with disabilities. In many situations these barriers are even more significant for women with disabilities, compared to men with disabilities.

Guidelines. Inclusion of persons with disabilities in humanitarian action

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 2019

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The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines. These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them. 

 

Chapters include:

  • What to do - key approaches to programming
  • Data and information management
  • Partnerships and empowerment of organisation of people with disabilities
  • Cross cutting considerations
  • Accountability to affected people and protection from sexual exploitation and abuse
  • Humanitarian response options
  • Stakeholder roles and responsibilities
  • What sectors need to do
  • Camp coordination and camp management
  • Education
  • Food security and nutrition
  • Livelihoods
  • Health
  • Protection
  • Shelter and settlements
  • Water, sanitation and hygiene

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.

Rapid review of the inclusion of people with disabilities and older people in gender-based violence (GBV) humanitarian interventions

PEARCE, Emma
MURRAY, Sinead
REIS, Chen
May 2019

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VOICE has partnered with Elrha to conduct a rapid review to:

1. Improve understanding of how people with disabilities and older people are included in GBV interventions;

2. Assess how strategies for DOAI are aligned with the recently published Humanitarian Inclusion Standards (HIS) for Older People and People with Disabilities;

3. Identify and document positive practice examples of inclusion of people with disabilities and older people in GBV interventions.

 

The VOICE review team collected qualitative and quantitative data through a range of methodologies, including a desk review of formal and grey literature such as programme documentation, and key informant interviews with key stakeholders.​

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.

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

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.

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 .

Working with persons with disabilities in forced displacement

UN HIGH COMMISSIONER FOR REFUGEES (UNHCR)
2019

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This note has been updated from its 2011 release and provides UNHCR and partners with specific guidance on meeting the protection needs of a diversity of persons with disabilities. While the document refers mainly to refugees, it applies to all of UNHCR’s persons of concern, including refugees, asylum seekers, internally displaced persons, returnees, and stateless persons.

This note provides guidance on: who persons with disabilities are; key principles (rights based approach, inclusion, participation and non-discrimination) and cross-cutting actions. 

Older people’s perceptions of health and wellbeing in rapidly ageing low- and middle-income countries

ALBONE, Rachel
2019

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This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.

This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.

 

 

 

Uniting to combat neglected tropical diseases 2018 Action Framework Report

UNITING TO COMBAT NEGLECTED TROPICAL DISEASES
2019

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From 2013 to 2017, the Uniting to Combat Neglected Tropical Diseases (“Uniting”) partnership has produced an annual scorecard and report to celebrate progress and highlight the principal challenges. The Uniting partnership reviewed the scorecard approach in 2017. The initial scoring process was associated with several challenges in terms of inconsistent indicators across diseases and the number of subjective judgements required to arrive at a final score. The scorecard review resulted in a transition from a scoring approach to a collaborative assessment of progress, gaps and priorities, and identification of areas for collective action. Two new tools replaced the scorecard: the Action Framework and the Impact Dashboard. The Action Framework is a standardized gap analysis tool. It uses qualitative input from stakeholders across the NTD community and fosters dialogue and collective action among a broad set of stakeholders. The Impact Dashboards display quantitative data sourced from WHO and pharmaceutical companies, with standardized indicators across the PC and IDM diseases, to provide a high-level view of impact and gaps at the global level. 

Unmet needs and use of assistive products in two districts of Bangladesh: Findings from a household survey

PRYOR, Wesley
NGUYEN, Liem
ISLAM, Qumrun Naher
JALAL, Faruk, Ahmed
MANJULA, Marella
December 2018

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Access to assistive products (AP) is an under-researched public health issue. Using an adaptation of a draft World Health Organization tool—the ‘Assistive Technology Assessment—Needs (ATA-N)’ for measuring unmet needs and use of AP, we aimed to understand characteristics of AP users, self-reported needs and unmet needs for AP, and current access patterns in Bangladesh. The ATA-N was incorporated in a Rapid Assessment of Disability (RAD), a population-based survey to estimate prevalence and correlates of disability. In each of two unions of Kurigram and Narsingdi districts, 60 clusters of 50 people each aged two years and older were selected using a two-staged cluster random sampling process, of whom, 4250 (59% Female; 41% Male) were adults, including 333 using AP. We estimate 7.1% of the studied population used any AP. AP use is positively associated with age and self-reported functional difficulty. The proportion of people using AP is higher for mobility than for sensory and cognitive difficulties. Of all people with any functional difficulty, 71% self-reported an unmet need for AP. Most products were home or self-made, at low cost, but provided benefits. Needs and unmet needs for AP are high, especially for people with greater functional difficulties. Assessing unmet needs for AP revealed important barriers to scale that can inform policy and practice.

Int. J. Environ. Res. Public Health 2018, 15(12), 2901;
doi:10.3390/ijerph15122901

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.

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