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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

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

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

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

Including children with disabilities in humanitarian action

UNICEF
July 2017

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"The purpose of Including Children with Disabilities in Humanitarian Action is to strengthen the inclusion of children and women with disabilities, and their families, in emergency preparedness, response and early recovery, and recovery and reconstruction. This series of booklets provides insight into the situation of children with disabilities in humanitarian contexts, highlights the ways in which they are excluded from humanitarian action, and offers practical actions and tips to better include children and adolescents with disabilities in all stages of humanitarian action. The booklets were created in response to UNICEF colleagues in the field expressing a need for a practical resource to guide their work. The information and recommendations are based on evidence and good practices gathered from literature and field staff experiences. The six booklets on how to include children and adolescents with disabilities in humanitarian programmes are as follows: 1) general guidance; 2) child protection; 3) education; 4) health and HIV/AIDS; 5) nutrition; 6) water, sanitation and hygiene (WASH)".

General guidance available July 2017. Others to follow.

In addition to the PDF versions in English, Arabic and French, the guidance is also available in a range of accessible formats, including EPUB, a Braille-ready file and accessible HTML formats. 

The guidance was developed in collaboration with Handicap International.

 

Accessible formats:

DAISY [zip file]

EPUB [EPUB]

HTML [zip file]

Braille-ready 

 

 

Additional resources:

Checklist for including children with disabilities in preparedness [English] [French]

Checklist for including children with disabilities in response and early recovery [English] [French]

Checklist for including children with disabilities in recovery and reconstruction 

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".

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

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

Stronger together : nutrition-disability links and synergies|Briefing note

GROCE, Nora
CHALLENGER, Eleanor
KERAC, Marko
2013

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Malnutrition can lead to disability, and disability can also lead to malnutrition. This paper will focus mainly on under-nutrition causing disability and disability causing or contributing to under-nutrition. Both nutrition and disability are key human rights issues. There is increasing knowledge about optimal nutrition-related practices and implementation of often low cost interventions to tackle issues of malnutrition in children. It is essential that governments, international actors and service providers consider and include the needs of children with disabilities in these efforts to ensure that children with disabilities have equitable access to nutrition in order to allow them to grow and thrive

Costs and cost-effectiveness of training traditional birth attendants to reduce neonatal mortality in the Lufwanyama neonatal survival study (LUNESP)

SABIN, Lora L
et al
2012

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"The Lufwanyama Neonatal Survival Project ("LUNESP") was a cluster randomized, controlled trial that showed that training traditional birth attendants (TBAs) to perform interventions targeting birth asphyxia, hypothermia, and neonatal sepsis reduced all-cause neonatal mortality by 45%. This companion analysis was undertaken to analyze intervention costs and cost-effectiveness, and factors that might improve cost-effectiveness"
PLoS ONE 7(4)

The roles and influence of grandmothers and men : evidence supporting a family-focused approach to optimal infant and young child nutrition

AUBEL, Judi
2011

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"This report reviews both published and gray literature from the past 25 years that addresses intra-household roles and dynamics related to infant and young child nutrition-specifically the roles and influence of senior women, or grandmothers, and men. The report examines infant and young child nutrition and other maternal and child health interventions explicitly involving grandmothers and/or men and reports on each intervention’s effectiveness"

Nutrition, physical activity and NCD prevention : a briefing document

THE NCD ALLIANCE
2011

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"The NCD Alliance Proposed Outcomes Document calls on governments around the world to commit to actions in a number of key areas to tackle the global burden of Non-Communicable Diseases (NCDs). This briefing document works in synergy with the Proposed Outcomes Document and provides evidence-based actions for nutrition and physical activity related aspects of NCD prevention...(This) briefing document is divided into two sections. Part A provides Key Messages and Guiding Principles together with clear Calls for Action to improve nutrition and increase physical activity. Part B presents an overview of the available evidence of nutrition, physical activity and NCDs, and of effective policies and interventions to reduce the common risk factors"

Priority medicines for mothers and children 2011

WORLD HEALTH ORGANIZATION (WHO)
2011

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This resource presents a list of priority medicines for mothers and children to help countries and partners select and make available those medicines that will have the biggest impact on reducing maternal, newborn and child morbidity and mortality
WHO/EMP/MAR/2011.1

Integrating early childhood development (ECD) activities into nutrition programmes in emergencies : why, what and how

WORLD HEALTH ORGANIZATION (WHO)
United Nation Children’s Fund (UNICEF)
2011

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"This document is written for local and international staff running nutrition programmes in emergencies, and for local, regional and national authorities and donors involved in such programmes. The note explains WHY nutrition programmes need to include early childhood development (ECD) activities to maximize the child’s development. It provides practical suggestions as to WHAT simple steps are necessary to create integrated programmes in situations of famine or food insecurity and it gives examples of HOW such integrated programmes have been established in other situations"

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