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Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition

Judith Baart
Willem Elbers
Alice Schippers
May 2023

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With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to persons with disabilities, including the collection of data on persons with disabilities. The Washington Group Short Set of Questions, which focuses on functional limitations, has been gaining popularity as an assessment tool for disability. This set of questions reflects a categorization of disability that does not necessarily correspond with subjective disability assessments, such as the yes/no question (“do you have a disability?”) which many development actors have used in their assessment tools when they collect disability data This study compares the subjective and the functional limitations assessment tools for disability to answer the question: do they identify the same individuals as persons with disabilities? Based on a survey carried out amongst persons with disabilities in Cambodia, we included both the Washington Group Short Set and a subjective question asking respondents to self-identify their disability type. We find that, although all respondents self-identified as disabled, not all respondents would be considered disabled according to the Washington Group Short Set of questions. In addition, there is little overlap between specific disability types according to a subjective classification method and the domains of functioning measured through the Washington Group methodology. Our findings affirm that categorization as abled or disabled depends on the tool used. This is important, as the assessment approach chosen by those collecting disability data can shape the design choices of policies and programs, and determine who benefits.

Global Disability Summit - Civil Society Consultations 2020

INTERNATIONAL DISABILITY ALLIANCE (IDA)
February 2021

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In December 2020, IDA coordinated with local and regional partners 4 (four) GDS consultations involving persons with disabilities in Africa, Latin America and Asia. These were the beginning of a series of more than 20 workshops that IDA is planning with partner organizations in different parts of the world, to assess progress made against national commitments adopted in 2018, discuss thematic priorities, and plan events, discussions and training for the run-up to the main GDS event in Oslo.

In total, consultations have been carried in 15 countries with more than 100 participants, reaching 5 (five) underrepresented groups: persons with intellectual & psychosocial disabilities, indigenous persons with disabilities, youth, and women

Learning Needs Assessment Report: Skills for impact - Rohingya Humanitarian crisis response, Bangladesh Local Humanitarian Aid Workers

AHSANUL ISLAM, Suman
et al
June 2020

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The Rohingya humanitarian crisis response in Cox’s Bazar (CXB) is a fairly new and complex experience for the humanitarian aid workers in Bangladesh. Aid workers are responsible for responding effectively in a very demanding context and acquire certain skills and competencies to adapt to the extreme workload. Since the current response in CXB began in 2017, local humanitarian aid workers (LHAWs) have gathered tremendous amount of learnings and experiences.

 

The objective of this LNA is to outline the knowledge, skills, capacity gaps and learning needs of LHAWs working in CXB. 

 

This LNA focuses on understanding LHAWs’ skills, knowledge and behaviour - both operational & technical. It analyses individuals' ability to contribute and implement response plans and respond effectively to the humanitarian crisis. Analysis focuses on understanding LHAWs’ capacity in addressing the needs of specific beneficiary groups such as children, women & girls, people with disability (PwD), elderly and people with chronic health issues. Quantitative and qualitative data was collected in November 2019.

 

Access and humanitarian protection: Lessons from restricted operational contexts and their application to the COVID-19 operational environment

April 2020

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On 22 April, the Norwegian Refugee Council (NRC), PHAP, and the Global Protection Cluster (GPC) organized the first of a series of webinars on access and humanitarian protection. The event provided an overview of the key terms, concepts, interlinkages, and dilemmas of protection and access in armed conflict, disaster, and health emergencies. What are the main protection concerns particular to hard-to-reach areas? What challenges do protection actors face in terms of access? Are maintaining access and protection priorities at cross purposes or can they help reinforce each other? This introduction was followed by a discussion with protection experts, exploring the ways in which existing lessons from protection programming in hard-to-reach areas can be applied to protection operations in the context of the COVID-19 outbreak.

 

The webinar recording and it's transcript are available

Public Health Information Services (PHIS) Toolkit

World Health Organization
2020

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This Toolkit complements to the Global Public Health Information Services (PHIS) Standards of the Global Health Cluster. The Toolkit assembles guidance, templates and best-practice examples for each core, additional and context-specific public health information service, as outlined in the PHIS standards.

The Toolkit also includes additional general tools and resources to support information management functions in activated Health Clusters.

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

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

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.

Guidance on strengthening disability inclusion in Humanitarian Response Plans

PERRY, Stephen
LANGE, Kirstin
MITRA, Gopal
WOOD, Gavin
April 2019

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This guidance provides support to seven UN entities on how to strengthen inclusion of disability in Humanitarian Response Plans (HRPs) as part of the UK Department for International Development (DFID) Humanitarian Investment Program. The aim of this work is to make humanitarian programming more responsive to the needs of people with disabilities affected by crisis. Humanitarian Response Plans are the product of a strategic planning process that is informed by humanitarian needs assessment activities. Therefore, this guidance focuses primarily on the steps in the humanitarian program cycle (HPC) leading to the HRP, including the process of developing the Humanitarian Needs Overview (HNO). This guidance has been aligned to the 2019 revision of this process

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. 

Investments to end poverty 2018 - meeting the financing challenge to leave no one behind

DODD, Amy
COPPARD, Daniel
CAIO, Celia
October 2018

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This report explores how development finance is responding to an increasingly challenging development and poverty landscape.

Chapters (and associated datasets) can be downloadable separately and are titled:

  • New mindsets for investments to end poverty
  • Strengthening the critical role of aid
  • Mobilising all resources to leave no one behind
  • Moving from data to impact - transparency and data use
  • Getting back on track - an action agenda for 2030

Associated datasets available are:

  • Trends in inflows of international financing, 2000–2016
  • List of countries being left behind
  • List of least developed countries (as of December 2018)

 

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

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This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

Managing epidemics - Key facts about major deadly diseases

WORLD HEALTH ORGANISATION (WHO)
2018

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The manual is structured in three parts.

  • Part One “Epidemics of the 21st century” provides vital insights on the main features of the 21st century upsurge and the indispensable elements to manage them.
  • Part Two “Be in the know. 10 key facts about 15 deadly diseases” contains key information about 15 diseases (Ebola Virus Disease, Lassa Fever, Crimean-Congo haemorrhagic fever, Yellow Fever, Zika, Chikungunya, Avian and Other Zoonotic Influenza, Seasonal Influenza, Pandemic Influenza, Middle East Respiratory Syndrome, Cholera, Monkeypox, Plague, Leptospirosis and Meningococcal Meningitis). This section provides tips on the interventions required to respond to epidemics of all these diseases.
  • Part Three “Tool boxes” gives an overview and summarized guidance on some other important topics, including: the role of WHO, the International Coordinating Group, laboratory diagnosis and shipment of infectious diseases substances, and vector control.

 

The handbook enables the three levels of WHO – its Headquarters, Regional Offices and Country Offices to work efficiently together by building the foundations of a shared conceptual and thinking framework, which includes common terminology. 

Pacific regional consultation – IASC guidelines on inclusion of persons with disabilities in humanitarian action

DOMINIK, Georgia
January 2018

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The Pacific Disability Forum (PDF), in partnership with the Inter-Agency Standing Committee (IASC) Task Team on Inclusion of Persons with Disabilities in Humanitarian Action and the International Disability Alliance (co-chair of the Task Team), held a regional multi-stakeholder consultation for the Pacific in Nadi, Fiji from 24 – 25 January 2018.

The workshop was the first in a series of regional consultations which will support the development of the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action (“the Guidelines”). 

The Guidelines will assist humanitarian actors, governments, affected communities and organizations of persons with disabilities to coordinate, plan, implement, monitor and evaluate essential actions that foster the effectiveness, appropriateness and efficiency of humanitarian action, resulting in the full and effective participation and inclusion of persons with disabilities and changing practice across all sectors and in all phases of humanitarian action. 

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Knowledge Management-based Classification Method for Disability-Inclusive Business

SANO, R
CHANDARASUPSANG, T
2014

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Purpose: This study provides evidence to clarify disability inclusiveness in activities of rural business. As an alternative to the analysis method that deals with disability-inclusiveness as a vague concept, knowledge management principles were applied to propose a classification method for disability-inclusive business as an emerging concept at the community level.

 

Methods: The analysis focuses on: 1) productivity of entrepreneurs with disabilities; 2) knowledge of entrepreneurs with disabilities; and 3) understanding of customers. A total of 50 entrepreneurs with disabilities in micro and small businesses in Southeast Asia were identified in this context. Data were collected and analysed according to a story-based knowledge management approach and value chain analysis. Fuzzy logic analysis which exploited domain ontology was utilised to convert knowledge from tacit to explicit, in line with knowledge management principles. A numeric weight based on linguistic variables became available to describe each disability-inclusive business case, as well as the arrangements of fuzzy sets.

 

Results: Out of 50 cases, 7 were classified as fully disability-inclusive while 14 were classified as not disability-inclusive. Productivity of entrepreneurs with disabilities in 3 elements of the value chain, namely procurement, product/service development and distribution, was observed to be significant. The Study showed that disability-related knowledge of entrepreneurs with disabilities could contribute to business performance according to the key success factors to enhance added value. Two elements of the value chain, namely sales/marketing and customer service, are not the decisive factors to define and clarify disability-inclusiveness. 

 

Conclusion: Settings in Southeast Asia are diverse and at varying stages of economic and social development; hence the environment which promotes the disability-inclusive business concept may be inconsistent. Micro and small- scale rural businesses were tackled as a first step to evaluate comparative efforts of each case of disability-inclusive business from the viewpoint of entrepreneurs with disabilities. Therefore, in highlighting the differences, it is recommended that further research should seek to apply weighting factors depending on the individual size, contents and scale of major business areas.

A world that counts : mobilising the data revolution for sustainable development

UNITED NATIONS (UN) INDEPENDENT EXPERT ADVISORY GROUP ON A DATA REVOLUTION FOR SUSTAINABLE DEVELOPMENT (IEAG)
November 2014

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This report highlights two big global challenges for the current state of data: whole groups of people are not being counted and important aspects of people’s lives and environmental conditions are still not measured; and there are huge and growing inequalities in access to data and information, and in the ability to use it. The report makes specific recommendations on how to address these challenges, calling for a UN-led effort to mobilise the data revolution for sustainable development: fostering and promoting innovation to fill data gaps; mobilising resources to overcome inequalities between developed and developing countries and between data-poor and data-rich people; leadership and coordination to enable the data revolution to play its full role in the realisation of sustainable development

Disability and the League of Nations: the Crippled Child’s Bill of Rights and a call for an International Bureau of Information, 1931

GROCE, Nora
2013

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In Disability Studies the evolution of conceptual models is often portrayed as linear, with a nineteenth-century charity model shifting to the medical model that dominated disability discourse in the twentieth century. This is then assumed to be largely unchallenged until the 1970s, when an emergent Disability Rights Movement re-framed issues into the social model, from which evolved a rights-based model. This paper documents two early efforts to address disability issues submitted to the League of Nations: the Crippled Child’s Bill of Rights in 1931 and a ‘Memorial’ requesting the establishment of an International Bureau of Information on Crippled Children in 1929. Neither submission achieved its stated goals, yet both reflect early attempts to place disability within wider social contexts.

Resilient livelihoods : disaster risk reduction for food and nutrition security framework programme

FOOD AND AGRICULTURE ORGANIZATION OF THE UNITED NATIONS
April 2013

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Through its disaster risk reduction (DRR) activities, the Food and Agriculture Organization of the United Nations (FAO) seeks to protect livelihoods from shocks, to make food production systems more resilient and more capable of absorbing the impact of, and recovering from, disruptive events. The FAO Disaster Risk Reduction for Food and Nutrition Security Framework Programme (DRR for FNS) serves to support and provide strategic direction, to FAO member countries and partners, for the implementation of Disaster Risk Reduction for Food and Nutrition Security programmes. The goal is to enhance the resilience of livelihoods against threats and emergencies to ensure the FNS of vulnerable farmers, fishers, herders, foresters and other at risk groups

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