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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.

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".

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

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"

Early childhood stimulation interventions in developing countries : a comprehensive literature review

BAKER-HENNINGHAM, Helen
BOO, Florencia Lopez
September 2010

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"This report reviews the effectiveness of early childhood stimulation interventions in developing countries. The report aims to answer the questions: What works in terms of early stimulation for young children in developing countries? For whom and under what conditions do these programs work and why do they work. The report is divided into several sections. Firstly, a brief discussion of the importance of early stimulation for young children in developing countries is provided. Secondly, the methods used to identify and characterize studies are provided and a review of randomized or quasi-experimental trials is presented. Thirdly, a review of the evidence for who benefits most from early interventions is presented followed by a review of program characteristics that affect the success of interventions and an examination of potential mechanisms through which interventions achieve their effects. Finally, recommendations for practice and future research are provided"
IDB working paper series

Engaging men to increase support for optimal infant feeding in Western Kenya

MARTIN, Stephanie
MUKARIA, Altrena
MAERO, Peter
2010

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Engaging male partners in breastfeeding promotion and education, as well as providing fathers with knowledge and skills for optimal breastfeeding practices, has been shown to positively impact exclusive breastfeeding rates. In order to address poor infant feeding practices, the Infant and Young Child Nutrition Project is integrating infant and young child nutrition into current community-level male involvement activities, conducting pilot activities with men’s group leaders in Western Province, Kenya in August 2009, as part of a larger community-based optimal infant feeding intervention

Women and health : today's evidence tomorrow's agenda

ABOUZAHR, Carla
DE ZOYSA Isabelle
GARCIA MORENO Claudia
Eds
2009

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This is a report on women and health - both women’s health needs and their contribution to the health of societies. Women’s health has long been a concern for the World Health Organization but today it has become an urgent priority. This report explains why. Using current data, it takes stock of what is known about the health of women throughout their lives and across the different regions of the world

Disabilities among refugees and conflict-affected populations

WOMEN'S COMMISSION FOR REFUGEE WOMEN AND CHILDREN
June 2008

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"This report is the culmination of a six-month project...to address the rights and needs of displaced persons with disabilities, with a particular focus on women (including older women), children and youth. Based on field research in five refugee situations, as well as global desk research, the Women’s Commission sought to map existing services for displaced persons with disabilities, identify gaps and good practices and make recommendations on how to improve services, protection and participation for displaced persons with disabilities"

Rickets : an overview and future directions, with special reference to Bangladesh

CRAVIARI, Thierry
March 2008

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"This article provides an overview of the history, epidemiology, clinical findings, treatment, and prevention of nu¬tritional rickets from both global and Bangladeshi perspectives. In so doing, an agendum for future research is proposed"
Rickets Convergence Group Meeting
Dhaka, Bangladesh
26-27 January 2006
Journal of Health, Population and Nutrition (JHPN), 26(1)

Infant and young child feeding in emergencies : making it happen, proceedings of a regional strategy workshop

EMERGENCY NUTRITION NETWORK (ENN)
et al
2008

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Young child feeding in emergencies is often poorly managed and supported, yet is a crucial component of an adequate emergency response and an important intervention to save lives and prevent malnutrition. This four day workshop aimed to reach consensus on how to protect and support Infant and young child Feeding in Emergencies (IFE) in the region. The particular focus was on emergency preparedness and the early humanitarian response on IFE

In the face of disaster : children and climate change

MCDIARMID, Paula
INTERNATIONAL SAVE THE CHILDREN ALLIANCE
Ed
2008

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This report explores the potential impact of climate change and natural disasters on children’s health, nutrition, protection and education. The report also raises concerns about how vulnerable households will cope and adapt to these changes, and what this might mean for children’s survival. It focuses on improving disaster risk reduction, including the use of child-centred approaches, and improving humanitarian response

Global health watch 2 : an alternative world health report

PEOPLE'S HEALTH MOVEMENT
MEDACT
GLOBAL EQUITY GAUGE ALLIANCE
2008

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This second edition of Global Health Watch covers a comprehensive range of topics, including access to medicines, mental health, water and sanitation, nutrition, and war and conflict. It also draws attention to the politics of global health and the policies and actions of key actors

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