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Inclusive information systems for social protection: Intentionally integrating gender and disability

BARCA, Valentina
HEBBAR, Madhumitha
COTE, Alexandre
SCHOEMAKER, Emrys
ENFIELD, Susan
HOLMES, Rebecca
WYLDE, Emily
March 2021

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Digital information systems serving the social protection sector, and especially social assistance, are increasingly prominent and will continue to be, as is the case within all other sectors. “Why? Because the ability of a country to care for its people and respond to their lifecycle needs depends on its ability to identify those who are in need, enroll them, provide tailored benefits and services, and follow up to cater to evolving circumstances”. Governments also need to be able to monitor programme implementation and impact, feeding into longer-term decisions on design and resource allocation. “All of these actions require accessible, dynamic and real-time data and information exchange if the goal of universal coverage is to be achieved” (Chirchir and Barca, 2019).

The coverage (% of the population included in the information system), relevance (amount/type of data they store), and accessibility (e.g. level of interoperability/data sharing across the government data ecosystem) of these administrative data systems has also been increasing in many countries – posing important opportunities and challenges to policy-makers. The question is how to develop these systems in a way that is inclusive and right-based, leveraging technology “to ensure a higher standard of living for the vulnerable and disadvantaged” (Alston, 2019) rather than becoming a further barrier to inclusion. To illustrate the point this paper specifically focuses on gender and disability inclusion, while acknowledging similar considerations apply to all other forms of (intersectional) exclusion.

Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019

CIEZA, Alarcos
CAUSEY, Kate
KAMENOV, Kaloyan
HANSON, Sarah Wulf
CHATTERJI, Somnath
VOS, Theo
December 2020

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Background: Rehabilitation has often been seen as a disability-specific service needed by only few of the population. Despite its individual and societal benefits, rehabilitation has not been prioritised in countries and is under-resourced. We present global, regional, and country data for the number of people who would benefit from rehabilitation at least once during the course of their disabling illness or injury.

 

Methods: To estimate the need for rehabilitation, data from the Global Burden of Diseases, Injuries, and Risk Factors Study 2019 were used to calculate the prevalence and years of life lived with disability (YLDs) of 25 diseases, impairments, or bespoke aggregations of sequelae that were selected as amenable to rehabilitation. All analyses were done at the country level and then aggregated to seven regions: World Bank high-income countries and the six WHO regions (ie, Africa, the Americas, Southeast Asia, Europe, Eastern Mediterranean, and Western Pacific).

 

Findings: Globally, in 2019, 2·41 billion (95% uncertainty interval 2·34–2·50) individuals had conditions that would benefit from rehabilitation, contributing to 310 million [235–392] YLDs. This number had increased by 63% from 1990 to 2019. Regionally, the Western Pacific had the highest need of rehabilitation services (610 million people [588–636] and 83 million YLDs [62–106]). The disease area that contributed most to prevalence was musculoskeletal disorders (1·71 billion people [1·68–1·80]), with low back pain being the most prevalent condition in 134 of the 204 countries analysed.

 

Interpretation: To our knowledge, this is the first study to produce a global estimate of the need for rehabilitation services and to show that at least one in every three people in the world needs rehabilitation at some point in the course of their illness or injury. This number counters the common view of rehabilitation as a service required by only few people. We argue that rehabilitation needs to be brought close to communities as an integral part of primary health care to reach more people in need.

 

VOLUME 396, ISSUE 10267, P2006-2017, DECEMBER 19, 2020
https://doi.org/10.1016/S0140-6736(20)32340-0

Landmine Monitor 2020

INTERNATIONAL CAMPAIGN TO BAN LANDMINES – CLUSTER MUNITION COALITION (ICBL-CMC)
November 2020

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This is the 22nd annual Landmine Monitor report. Landmine Monitor 2020 provides a global overview of the landmine situation. Chapters on developments in specific countries and other areas are available in online Country Profiles at www.the-monitor.org/cp. Landmine Monitor covers mine ban policy, use, production, trade, and stockpiling; includes information on developments and challenges in assessing and addressing the impact of mine contamination and casualties through clearance, risk education, and victim assistance; and documents international and national support for mine action. This report focuses on calendar year 2019, with information included up to October 2020 where possible.

 

The victim assistance coordination section covers the following topics: Participation of victims and their representative organizations; A relevant government agency to coordinate victim assistance; Multi-sectoral efforts in line with the CRPD; National referral mechanisms; Centralized database with needs and challenges

Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

Disability Debrief: an international update on persons with disabilities in the COVID-19 crisis

TORRES FREMLIN, Peter
September 2020

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This is an update on disability news around the world relating to the COVID-19 crisis, from late April to the end of September 2020. It's a snapshot of news, statistics, policy, and experiences of persons with disabilities around the world. Links are prvided to the original resources.

 

Topics covered include:

  • What has happended so far: Data on COVID-19 and mortality; Care homes and institutional settings; Impact on persons with disabilities; Gathering data and the gaps; Experiences of Persons with Disabilities
  • Disability in response; International response: Collections of resources; Country and Regional Approaches; Resources by disability
  • Inclusion in protection and interim measures; Masks / face coverings; Physical distancing and isolation; Lockdown and confinement; Institutions and long-term care facilities; Coming out of lockdown; Social protection and services
  • Health, treatment and recovery
  • Across society and sectors: Care; Culture and sport; Digital accessibility and inclusion; Education and young people; Elections and politics; Humanitarian and Refugees; International cooperation; Justice; Mental Health; Transportation and travel; Violence; Water, Sanitation and Hygiene (WASH); Work and skills
  • Rebuilding / what happens next; New perspectives and recovery; Social protection; Work and employment

 

Gap Analysis: the inclusion of people with disability and older people in humanitarian response

ROBINSON, Alex
MARELLA, Manjula
LOGAM, Lana
July 2020

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To build the evidence base on inclusion, and inform our priorities for innovation, the Elrha Humanitarian Innovation Fund (HIF) commissioned a Gap Analysis on the Inclusion of People with Disability and Older People in Humanitarian Response. This is the first of two reports from the Gap Analysis and summarises findings from the literature review components of this work. The Gap Analysis has been led by the Nossal Institute for Global Health at the University of Melbourne. The Nossal Institute team was supported by Arbeiter-Samariter-Bund’s Office for Indonesia and the Philippines (ASB) in the review of grey literature.  This report begins by outlining the approach taken to the academic and grey literature reviews. This is followed by an overview of findings, which maps evidence from different sectors against thematic areas based on the Humanitarian Inclusion Standards for Older People and People with Disabilities (HIS).

 

Supplementary information is available as a separate accompanying annex. The annex includes a summary of each article identified in the review arranged by HIS and sector; graphs showing the distribution of articles, including by year, humanitarian context, and geographical region; and a list of guidelines on the inclusion of people with disability and older people in humanitarian response

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.

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities. (Spotlight on adequate standard of living and social protection)

ADAMS, Lisa
2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The thematic focus of this guideline is on an adequate standard of living and social protection.

 

The guideline has three main parts:

  • Introduction and overview
  • Assessment tool to evaluate where your country or sub-national region is in terms of implementation of CRPD Article 28
  • Advocacy strategies to support implementation of CRPD Article 28 within the SDGs

 

The guideline also includes Annexes with further tools, resources and good practice case studies

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.

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

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.​

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

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

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.

Global Disability Summit 2018 - Summary of commitments

August 2018

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The key objective of the Global Disability Summit was to deliver ambitious new global and national level commitments on disability inclusion. National governments and other organisations made 170 sets of commitments around the four central themes of the Summit (ensuring dignity and respect for all, inclusive education, routes to economic empowerment and harnessing technology and innovation), as well as the two cross-cutting themes (women and girls with disabilities and conflict and humanitarian contexts), and data disaggregation.

 

Commitments made can be viewed in full on: https://www.gov.uk/government/collections/global-disability-summit-commitments

 

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.

Improving educational outcomes for people with disabilities in low and middle-income countries: why does it matter and what works?

KUPER, Hannah
SARAN, Ashrita
WHITE, Howard
July 2018

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The studies included in this Rapid Evidence Assessment (REA) are taken from the Disability Evidence and Gap Map (EGM) prepared by the Campbell Collaboration for the UK Department for International Development (DFID) under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. Qualitative studies, process evaluations, and non-impact evaluations (e.g. crosssectional surveys) were not eligible for inclusion. Quality grading was applied to the literature, so that assessment could be made of where there was strong evidence and where evidence was limited or missing. The studies were grouped by education sub-outcomes related to different stages in education across the life course; that is: early intervention, primary education, secondary education, non-formal education, and lifelong learning. 

 

There were 24 eligible individual studies, including studies conducted in the Middle East (10), Asia (7), and Africa (5), one from Latin America, as well as one multicountry study

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