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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 and nutrition programming: evidence and learning (Disability Inclusion Helpdesk Report No. 6)

HOLDEN, Jenny
CORBY, Nick
February 2019

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This document provides a rapid review of the evidence on approaches to ensuring people with disabilities are reached through nutrition programming, focusing on children, adolescents, and women of reproductive age in low and middle-income countries (LMICs). The purpose of this review is to support DFID advisers and partners designing and implementing programmes with nutrition components to ensure they are more inclusive of people with disabilities. After outlining the methodology in Section 2, Section 3 includes an overview of available evidence on what works to ensure nutrition programming reaches people with disabilities, as well as an assessment of the strength of the evidence, and highlighting key research gaps. Section 4 provides a summary on factors affecting access for people with disabilities, and Section 5 concludes by drawing a series of considerations for policy and programming to ensure that people with disabilities are not left behind when it comes to government-led and development partner-led programmes to tackle malnutrition. Case studies of approaches are included in annex 1 to give further insights on promising practices and key learnings

Missing millions: How older people with disabilities are excluded from humanitarian response

SHEPPARD, Phillip
POLACK, Sarah
McGIVERN, Madeleine
July 2018

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The aim of this study was to explore the experiences of older people with disabilities across a range of humanitarian settings, considering:

  • whether older people with disabilities have additional needs and challenges accessing humanitarian assistance and protection
  • what factors facilitate or limit access by older people with disabilities to humanitarian assistance and protection
  • to what extent is humanitarian response inclusive of older people with disabilities

A systematic literature review of published studies was conducted. Key online humanitarian guidelines were explored to review how far they explicitly address older people with disabilities. Data from six population-based disability surveys comparing the living situation of older people with and without disabilities were analysed. These included databases from two crises-affected populations in Haiti (post-earthquake) and Palestine. Data from four non-humanitarian settings was also reviewed to explore more broadly the situation for older people with disabilities – India, Guatemala, Cameroon and Nepal. Interviews were held with older people with disabilities, members of their families and local key informants in two conflict-affected populations in Ndutu and Mtendeli refugee camps in Western Tanzania, and Donetsk and Luhansk regions of Eastern Ukraine to find out about their experiences. Staff of five international agencies working in humanitarian response were also interviewed. 

 

Findings highlight particular issues facing older people with disabilities in humanitarian crises: more risk escaping from danger;  barriers to accessing social protection and work; barriers to accessing health and rehabilitation services; barriers to accessing food and other essentials; unsuitable housing and poor living conditions;  insecurity and discrimination; threats to dignity and independence; social isolation and loneliness; risks to mental health; and missing from humanitarian response.

 

A table brings together the findings from the different components of the research to show the needs, risks, barriers and enablers for older people with disabilities identified in the research. Recommendations are provided to humanitarian donors, policy makers and practitioners

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

Expand view

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.

Including children with disabilities in humanitarian action: Nutrition

DINSMORE, Christine
Ed
February 2018

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This guidance is designed for UNICEF field staff – including humanitarian field officers, coordinators, specialist and advisors – as well as UNICEF’s partners and others involved in humanitarian work. It provides practical tips and offers entry points for making sure that humanitarian action takes children with disabilities into account. There are 5 other associated guidelines. 

All nutrition humanitarian staff can contribute significantly to the inclusion of children with disabilities, even if not an expert or specialist on issues related to disability. This booklet provides practical tips and entry points to start the process

Chapters include: 

  • impact of emergencies on nutrition of children and women with disabilities
  • why children and adolescents with disabilities are excluded from nutrition and food security interventions
  • frameworks and approaches
  • programmatic actions
  • preparedness
  • response and early recovery
  • recovery and reconstruction
  • practical tips
  • accessible infrastructure tips

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Autism and eating issues: an interview with Dr Elizabeth Shea

THE NATIONAL AUTISTIC SOCIETY
January 2017

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Dr Elizabeth Shea is Clinical Psychologist at the Birmingham Food Refusal Service. Elizabeth kindly agreed to be interviewed for Network Autism when she attended the XI Autism-Europe International Congress hosted by the National Autistic Society in 2016.

In this video Elizabeth discusses some of the common eating issues that autistic people may experience. She explores why autistic people may struggle with eating issues and outlines how professionals can best support them.

Individual interview questions

1. Can you tell us how you first became interested in autism?

2. Can you tell us about your current work?

3. What are the most common eating issues that you see for autistic people?

4. Can you highlight some of the reasons why autistic people may develop eating issues?

5. What are the most effective treatments for eating issues for autistic people?

6. What advice would you have for professionals working with autistic people who maybe struggling with eating issues?

Humanitarian Hands on Tool (HHoT)

CBM
2017

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The CBM smartphone app 'Humanitarian Hands-on Tool' (HHoT) provides step-by-step guidance on how to implement an inclusive emergency response. With disability-inclusive humanitarian action broken down into individual task cards, which explain the basic 'how-to' details in simple language and images, this web-based tool and downloadable mobile app aims to become the ‘go-to’ field resource for all agencies planning humanitarian work that leaves no-one behind

The wellbeing of children with developmental delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam: An analysis of data from UNICEF’s Multiple Indicator Cluster Surveys

EMERSON, Eric
SAVAGE, Amber
LLEWELLYN, Gwynnyth
December 2016

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This report, produced by the University of Sydney’s Centre for Disability Research and Policy (CDRP),
uses data collected in rounds four and five of UNICEF’s Multiple Indicator Cluster Surveys programme (MICS) to describe the wellbeing of young children with and without developmental delay in six Asian countries. The United Nations Sustainable Development Goals (SDG) were used as a framework for identifying indicators of child wellbeing.

The report, authored by CDRP Disability and Inequity Stream Leader Professor Eric Emerson with Dr Amber Savage of the Family and Disability Studies Initiative, University of Alberta, Canada and CDRP Director Professor Gwynnyth Llewellyn, found that children with Developmental Delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam are more likely than their peers to:
• Be living in poverty (SDG1). In five out the six countries children with developmental delay were more likely to be living in poverty than their peers
• Experience hunger (SDG2). In all six countries children with developmental delay were more likely to have experienced persistent severe hunger than their peers
• Suffer poor health (SDG3). On three indicators (poor peer relationships, diarrhoea and fever) children with developmental delay were more likely to have poor health than their peers. On three indicators (obesity, aggression and acute respiratory infections) there was no systematic difference between children with and without developmental delay.
• Experience barriers to quality education (SDG4). On all four indicators (attendance at early childhood education centre, family support for learning, access to learning materials in the home, maternal level of education) children with developmental delay were more disadvantaged than their peers.
• Experience barriers to clean water and sanitation (SDG6). On two indicators (improved sanitation, place to wash hands) children with developmental delay were more disadvantaged than their peers. On one indicator (improved drinking water) there was no systematic difference between children with and without developmental delay.

The authors noted that “Since the development of the United Nations Convention on the Rights of the Child (UNCRC) in 1998, increased attention has been paid to monitoring the well-being of children. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) and UNCRC both contain explicit provisions regarding the rights of children with disabilities. These impose obligations on governments to act to ensure that children with disabilities enjoy the same rights and opportunities as other children. In order to promote the visibility of children with disabilities, enable better policy, and monitor progress, disaggregation of data related to children’s well-being on the basis of disability is needed."

For every child, a fair chance : the promise of equity

UNITED NATIONS CHILDREN’S FUND (UNICEF)
November 2015

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“UNICEF’s commitment to equity – giving a fair chance in life to every child, everywhere, especially the most disadvantaged – is built on the conviction that it is right in principle and evidence that it is right in practice. This report makes the case for closing persistent gaps in equity…” The report identifies a number of persistent gaps in equity for children, ranging from health to nutrition, to social inclusion. The report concludes by making recommendations to close gaps in equity worldwide as well as projecting progress in achieving equity by 2030

Projecting progress : reaching the SDGs by 2030

NICOLAI, Susan
et al
September 2015

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The report presents an analysis that begins to systematically quantify the scale of the challenge that the world has set itself with the Sustainable Development Goals for the first time.  The authors selected one target per goal – a total of 17 – and projected forward to 2030, grading them from A-F according to how near they will be to completion in 2030. This was based on available projections of current trends sourced from leading institutions, alongside our own where there were gaps. The resulting scorecard shows that unless significant changes are made, none of the SDGs will be met

Guidelines for integrating gender-based violence interventions in humanitarian action: Reducing risk, promoting resilience and aiding recovery

WARD, Jean
LAFRENIERE, Julie
et al
2015

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The purpose of these Guidelines is to assist humanitarian actors and communities affected by armed conflict, natural disasters and other humanitarian emergencies to coordinate, plan, implement, monitor and evaluate essential actions for the prevention and mitigation of gender-based violence (GBV) across all sectors of humanitarian response. Part One presents an overview of GBV, provides an explanation for why GBV is a protection concern for all humanitarian actors and outlines recommendations for ensuring implementation of the Guidelines. Part Two provides a background to the ‘thematic areas’ in Part Three. It also introduces the guiding principles and approaches that are the foundation for all planning and implementation of GBV-related programming. Part Three constitutes the bulk of these Guidelines. It provides specific guidance, organized into thirteen thematic area sections: camp coordination and camp management; child protection; education; food security and agriculture; health; housing, land and property; humanitarian mine action; livelihoods; nutrition; protection; shelter, settlement and recovery; water, sanitation and hygiene; humanitarian operations support sectors. The importance of cross-sectoral coordination is highlighted in each section. It is also recommended that sector actors review the content of all thematic area sections. The Guidelines draw from many tools, standards, background materials and other resources developed by the United Nations, national and international non-governmental organizations, and academic sources. In each thematic area there is a list of resources specific to that area, and additional GBV-related resources are provided in Annex 1. The importance of indicators being disaggregated by sex, age, disability and other vulnerability factors is highlighted throughout.

Abandoned by the state : violence, neglect, and isolation for children with disabilities in Russian orphanages

MAZZARINO, Andrea
September 2014

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This report presents the situation of violence, neglect, and isolation for children with disabilities in Russian orphanages.  The report is based on visits by Human Rights Watch researchers to 10 orphanages in 6 regions of Russia, as well as on more than 200 interviews with parents, children, and young people currently and formerly living in institutions in these regions in addition to 2 other regions of Russia. It finds that many children and young people with disabilities who have lived in state orphanages suffered serious abuse and neglect on the part of institution staff that impedes their development. The report presents the background of the current situation and its detailed findings. and makes recommendations to key Russian stakeholders to ensure protection of the rights of children with disabilities in Russia and to comply with its international human rights obligations

Note: Easy read version is available from the web link

Malnutrition and disability: unexplored opportunities for collaboration

GROCE, Nora
CHALLENGER, E
BERMAN-BIELER, R
FARKAS, A
YILMAZ, N
SCHUTLINK, W
CLARK, D
KAPLAN, C
KERAC, M
2014

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There is increasing international interest in the links between malnutrition and disability: both are major global public health problems, both are key human rights concerns, and both are currently prominent within the global health agenda. In this review, interactions between the two fields are explored and it is argued that strengthening links would lead to important mutual benefits and synergies. At numerous points throughout the life-cycle, malnutrition can cause or contribute to an individual's physical, sensory, intellectual or mental health disability. By working more closely together, these problems can be transformed into opportunities: nutrition services and programmes for children and adults can act as entry points to address and, in some cases, avoid or mitigate disability; disability programmes can improve nutrition for the children and adults they serve. For this to happen, however, political commitment and resources are needed, as are better data.



Paediatrics and International Child Health
Volume 34, 2014 - Issue 4: Nutrition and malnutrition in low- and middle-income countries
https://doi.org/10.1179/2046905514Y.0000000156

The interaction of malnutrition and neurologic disability in Africa

KERAC, Marko
et al
March 2014

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Malnutrition and neurodisability are both major public health problems in Africa. This review highlights key areas where they interact. These areas of interaction include maternal malnutrition, toxin ingestion, macronutrient malnutrition and micronutrient deficiencies - all of which cause or are caused by neurodisability, The article concludes that there is an urgent need for nutrition and disability programmes to work more closely together

Seminars in Pediatric Neurology, Volume 21, Issue 1

Assessment of neurodisability and malnutrition in children in Africa

GLADSTONE, Melissa
MALLEWA, Mac
ALUSINE JALLOH, Alhaji
VOSJUIKL, Wieger
POSTELS, Douglas
GROCE, Nora
KERAC, Marco
MOLYNEUX, Elizabeth
March 2014

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Neurodevelopmental delay, neurodisability, and malnutrition interact to contribute a significant burden of disease in global settings. Assessments which are well integrated with plans of management or advice are most likely to improve outcomes. Assessment tools used in clinical research and programming to evaluate outcomes include developmental and cognitive tools that vary in complexity, sensitivity, and validity as well as the target age of assessment. Few tools have been used to measure socioemotional outcomes and fewer to assess the disabled child with malnutrition. There is a paucity of tools used clinically which actually provide families and professionals with advice to improve outcomes. Brain imaging, electroencephalography, audiology, and visual assessment can also be used to assess the effect of malnutrition on brain structure and function. The interaction of neurodisability and malnutrition is powerful, and both need to be considered when assessing children.

Seminars in Pediatric Neurology, Child Neurology in Africa, Volume 21, Issue 1, March 2014, Pages 50–57

Childhood disability and malnutrition in Turkana Kenya : a summary report for stakeholders and policy

KISIA, James
et al
2014

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This study aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.   The report is intended for stakeholders to inform policy

Research summary : childhood disability and malnutrition in Turkana Kenya

KISIA, James
et al
2014

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This report summarises a study that aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.  The report is intended for stakeholders to inform policy 

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