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Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

ROSENBAUM, Peter L
SILVA, Mindy
CAMDEN, Chantal
January 2021

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Purpose: The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception.

 

Methods: This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020.

 

Results: The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned.

 

Conclusions: The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward.

Disability inclusion annual report 2020

UNITED NATIONS RELIEF AND WORKS AGENCY (UNRWA)
December 2020

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The number of Palestine refugees registered by UNRWA recently grew to 5.7 million (from 5.5 million in 2019) in all its five field of operations in Jordan, Lebanon, Syria, Gaza and the West Bank. Among them are Palestine refugees with disabilities, who have long-term impairments, which in interactions with attitudinal, institutional, and environmental barriers prevent their full and effective participation on an equal basis with others in society. Persons with disabilities constitute an estimated 15 per cent of the global population1, and may constitute a higher percentage in humanitarian contexts, such as Syria, the West Bank and Gaza, in particular, which are UNRWA fields of operations.

 

The main actions undertaken in 2020 discussed in the report are:

  • targeted and disability-specific services for persons with disabilities
  • disability inclusion through programmes
  • inter-agency coordination
  • international protection advocacy

If not now, when? Keeping promises to older people affected by humanitarian crises

McGIVERN, Verity
November 2020

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This report looks at the extent to which older people’s rights are being upheld in emergencies and their needs met. The picture it paints is a bleak one. Although some efforts are being made to support older people, overall, the humanitarian system is failing by the standards it has set itself.
 
The report draws on the findings of needs assessments carried out by HelpAge International in the 13 months to the end of 2019. We interviewed 8,883 people aged 50 to 80 - plus affected by natural disasters, conflict or socioeconomic crises in 11 countries in Africa, Asia, Latin America and the Middle East.
 
Since the data was collected, COVID-19 has swept across the globe. The pandemic has both increased the need for humanitarian aid and disrupted its delivery. The response to coronavirus has thrown into stark relief the gulf between the risks older people are facing and the level of support available to them. The findings in this report provide important lessons for improving this response
 

Access to age-assistive technology: A resilience building measure for older people

HISCOCK, Diana
MALIK, Deepak
June 2020

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The intersection between age, gender and disability and the use of assistive technology (AT) by older people, in emergency response and as a tool for disaster risk reduction (DRR) is explored. The report shows that AT can have a positive impact on independence, vulnerability reduction and resilience building for older women and men in humanitarian crises. This report urges for sensitization and capacity building of humanitarian organizations for the inclusion and promotion of assistive product (AP) provision in humanitarian response and offers insight into key areas to enable AT provision to successfully meet the needs of older people.

 

The study employed primary research methods to gather both quantitative and qualitative information through a semi-structured survey with HelpAge programme beneficiaries in five countries: Bangladesh, Indonesia, Myanmar, Nepal and Pakistan. The survey incorporated the Washington Group short set of questions (WGQs), designed to identify people with functional difficulties in six core functional domains: mobility, vision, hearing, cognition, self-care and communication (Washington Group on Disability Statistics, 2016). The report also summarises secondary research including a literature review, information from rapid needs assessments carried out by HelpAge, and maps out relevant policy changes which have led to better recognition of the intersectionality and importance of AT for older men and women.

Early rehabilitation in conflicts and disasters

LATHIA, Charmi
SKELTON, Peter
CLIFT, Zoe
Eds
January 2020

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When emergencies strike, there is a huge surge in the need for Early Rehabilitation. Early Rehabilitation for patients with traumatic injuries in conflicts and disasters is now recognised as being an integral part of a patient’s recovery. However, the majority of rehabilitation professionals in countries that experience such emergencies do not have all the skills needed to treat all of the injuries. HI, in collaboration with leading organisations (ICRC, MSF-France, CBM, Livability & the WHO), has created this educational resource package to fill this gap

Each chapter of this handbook has been written by experts in their field. It includes pictures and evidence based treatment protocols to help rehabilitation professionals around the world to delivery high quality early rehabilitation intervention. Chapters included are:

  • Key Challenges in Delivering Early Rehabilitation in Conflicts and Disasters
  • Early Rehabilitation Patient Assessment and Treatment - the Basics
  • Early Rehabilitation of Fractures 
  • Early Rehabilitation of Peripheral Nerve Injuries
  • Early Rehabilitation of Amputees
  • Early Rehabilitation of Acquired Brain Injuries
  • Early Rehabilitation of Spinal Cord Injuries
  • Early Rehabilitation of Burns

Videos accompany each of the chapters. The handbook contents are directly linked to modules taught on disasterready.org where there are additional accompanying resources designed to be used in conflict and disasters settings

Manual on community-based mental health and psychosocial support in emergencies and displacement

SCHININA, Guglielmo
Ed
July 2019

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This manual aims to facilitate mental health and psychosocial support (MHPSS) experts and managers in designing, implementing and evaluating community-based MHPSS (CB MHPSS) programmes, projects and activities for emergency-affected and displaced populations in humanitarian settings. It is specifically designed to support managers and experts hired by the International Organization for Migration (IOM). However, it can also be used, in its entirety or in some of its components, by MHPSS experts and managers working for IOM’s partners, including international and national governmental organizations, non-governmental organizations (NGOs), countries, donors and civil society groups.

 

The first chapter introduces concepts, models and principles of CB MHPSS work; the other chapters are operational and programmatic. These chapters are of two types: •

 

Those that have to do with the process of a CB MHPSS programme: 

Engaging with communities; - Assessing and mapping; - Psychosocial mobile teams; - Technical supervision and training; - Monitoring and evaluation; - Plus two annexes on coordination and ethical considerations. •

 

Those that introduce specific CB MHPSS activities: - Sociorelational and cultural activities; - Creative and art-based activities; - Rituals and celebrations; - Sport and play; - Non-formal education and informal learning; - Integration of mental health and psychosocial support in conflict transformation and mediation; - Integrated mental health and psychosocial support, and livelihood support; - Strengthening mental health and psychosocial support in the framework of protection; - Counselling; - Community-based support for people with severe mental disorders.

Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Emergency trauma response to the Gaza mass demonstrations 2018–2019. A one-year review of trauma data and the humanitarian consequences

OLIM, Nelson
HALIMAH, Sarah
Eds
May 2019

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The specific goals of this publication are first, to conduct an analysis of 1 year of conflict related trauma in Gaza; second, to highlight the role of the Health Cluster partners, including the World Health Organization (WHO) as the cluster lead agency, in supporting the local health system; and third, to document success stories, challenges and lessons learnt

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

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

Psychosocial disability in the Middle East

BOLTON. Laura
May 2018

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A K4 helpdesk report, commissioned by DFID (UK), provides a rapid review of literature to provide best estimates of psychosocial disability in specific countries in the Middle East.

Topics discussed include:

Prevalence and different forms of mental health conditions and psychosocial disability

Factors influencing prevalence

Differences across demographics

Provision for those with psychosocial disabilities

Humanitarian inclusion standards for older people and people with disabilities

ADCAP
TILL, Celia
et al
February 2018

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The Humanitarian inclusion standards for older people and people with disabilities provide guidance across all areas and at all stages of emergency response to ensure older people and people with disabilities are not left out.

The standards consist of nine key inclusion standards, including identification, safe and equitable access, knowledge and participation, and learning. Alongside these, there are seven sector-specific inclusion standards, which include protection, shelter, health, and water, sanitation and hygiene.

Each standard comes with key actions, guidance, tools and resources, and case studies illustrating how older people and people with disabilities have been included in humanitarian responses.

The sector-specific standards provide guidance in three key areas: data and information management, addressing barriers to inclusion, and participation of older people and people with disabilities.

By implementing the key action points provided, organisations will build up a greater evidence base, deliver more inclusive programmes, and be able to better demonstrate impact on the lives of those most at risk during humanitarian crises.

The standards can be used as guidance during programme development, implementation and monitoring, and as a resource for training and advocacy.

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.

WHO launches rehabilitation standards for Emergency Medical Teams

WORLD HEALTH ORGANISATION (WHO)
May 2017

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WHO together with health partners such as CBM, Handicap International, and the International Committee of the Red Cross, have released the ‘Emergency Medical Teams: Minimum Technical Standards and Recommendations for Rehabilitation’ which provides important guidance on how emergency medical teams (EMTs) can incorporate rehabilitation in their response to emergencies. Using the experiences from the 2015 Nepal earthquake, this video shows the impact it had on the lives of those injured years later and highlights the reasons why rehabilitation needs to be a core component of any emergency medical response. Integrating rehabilitation into the EMT response resulted in greater clinical care by producing important, cost-effective, and positive long term outcomes at the individual, family, and community levels

Not forgetting severe mental disorders in humanitarian emergencies: a descriptive study from the Philippines

WEINTRAUB, Ana Cecilia Andrade de Moraes
et al
November 2016

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"In response to the Typhoon Haiyan in the Philippines, Médecins Sans Frontières-Operational Centre Brussels (MSF-OCB) decided to concentrate its efforts in the severely affected area of Guiuan and its four surrounding municipalities. The MSF-OCB intervention included a comprehensive approach to mental health, including care for people with pre-existing and post-disaster severe mental disorders. Based on this experience of providing MH care in the first five months after Typhoon Haiyan, we report on the monthly volume of MH activities and beneficiaries; sociodemographic and care seeking characteristics of beneficiaries receiving MH counselling/care, stratified by the severity of their condition; profile and outcomes of patients with severe mental disorders; prescribing practice of psychotropic medication; and main factors facilitating the identification and management of individuals with severe mental disorders"

International Health, Vol.8, No.5, pp. 336-344

Doi: 10.1093/inthealth/ihw032

The 2015 Nepal earthquake(s): Lessons learned from the disability and rehabilitation sector's preparation for, and response to, natural disasters

LANDRY, Michel
SHEPHARD, Phillip
LEUNG, Kit
RETIS, Chiara
SALVADOR, Edwin
RAMAN, Sudha
November 2016

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This article outlines lessons learned from 2015 Nepal earthquake that can be applied to future disasters to reduce overall disability-related outcomes and more fully integrate rehabilitation in preparation and planning. Information is presented on disasters in general, and then specficially on the earthquake(s) in Nepal. Field experience in Nepal before, during, and after the earthquake is described, and actions that can and should be adopted prior to disasters as part of disability preparedness planning are examined. Emerging roles of rehabilitation providers such as physical therapists during the immediate and postdisaster recovery phases are discussed. Finally, approaches are suggested that can be adopted to “build back better” for, and with, people with disabilities in postdisaster settings such as Nepal.

 

Physical Therapy, Volume 96, Issue 11, 1 November 2016, Pages 1714–1723

https://doi.org/10.2522/ptj.20150677

 

WCPT report : the role of physical therapists in disaster management

SKELTON, Peter
SYKES, Catherine
et al
March 2016

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This report has two main aims: to highlight the need for physical therapist involvement in disaster management and particularly in Emergency Medical Teams (EMTs); and to brief physical therapists who want to work in the field, and national and international agencies who are already working in the field. Following an introduction to the topic of disasters, the paper outlines in separate sections the three phases of disaster management most relevant to physical therapists: preparedness; response; and recovery. Each section includes information on the role of physical therapists and details guidelines and resources to support practice in disaster management. Case studies include: Nepal, 2015 April earthquake; 2011- great East Japan earthquake; integration of rehabilitation professionals into the UK Emergency Medical Team; Nepal, 2011 onwards; Phillipines, typhoon Sendong, 2011;  Phillipines, typhoon Haiyan, November 2013; Haiti, 2011- physical therapy in post-earthquake recovery and reconstruction; Pakistan, earthquake Oct 2005; Phillipines, typhoon Bopha 2012-2013.

Rehabilitation in sudden onset disasters

SKELTON, Pete
HARVEY, Alice
September 2015

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The role of rehabilitation professionals in responding to Sudden Onset Disasters (SODs) is evolving rapidly, and our professions increasingly find themselves at the forefront of emergency response teams. At the same time, there is a movement towards the professionalisation of the humanitarian response sector, in particular Emergency Medical Teams, and a recognition that specialist training is required to prepare professionals for work in an austere humanitarian environment. The intended audience of the manual are physiotherapists and occupational therapists who may deploy to provide rehabilitation in the immediate aftermath of a sudden onset disaster. It was developed to support volunteers on the UK International Emergency Trauma Register (UKIETR), but with the aim of being relevant to all rehabilitation professionals interested in rapid deployment to austere environments. The content is restricted to the context of sudden onset disasters such as an earthquake or tsunami, and has been developed to support work in an austere environment, where the type of equipment and support that is normally available has been disrupted. UKIETR professionals are UK based volunteers who receive specialist training to prepare them for international deployment as part of team in response to emergencies. They may be deployed within a multi-disciplinary foreign medical team in a field hospital scenario, or as part of a more specialist ‘cell’ offering niche medical, surgical or rehabilitation services. The manual is designed to complement the three day core rehabilitation training run by Handicap International which all UKIETR members must attend. It is a clinical manual, and the contents are directly linked to modules taught on the core training course. In addition there are a number of ‘cheat sheets’ and patient education resources at the back of the manual which are designed to be used in the field. Chapters include: rehabilitation and the UKIETR; introduction to rehabilitation following sudden onset disasters; amputee rehabilitation; spinal cord injury; peripheral nerve injury; fractures; burns and soft tissue injury; and acquired brain injury

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