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Forgotten in a Crisis: Addressing Dementia in Humanitarian Response

Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and 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.

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Towards inclusion. A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
November 2017

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Inclusive development is about creating societies that value and enfranchise all marginalised groups. It is often not difficult to open up development projects to persons from these marginalised groups. But it does take time before organisations are willing and able to fully commit to inclusion.

Towards Inclusion aims to support organisations who wish to commit to an inclusive approach. It establishes the rationale for inclusion and provides technical advice and tools for putting theory into practice. It is intended to be used as a reference during organisational development, as well as a tool to support good practice in implementation.

If you are looking to support a (development) organisation in the process of becoming an inclusive organisation, then Towards Inclusion is for you

This guide consists of three parts. The first part guides the reader through the process of assessing whether or not the organization is ready to change towards becoming a more inclusive organization. The second part introduces the ACAP framework, which sets up a way of approaching inclusion via focus on the areas: Access, Communication, Attitude and Participation. It then demonstrates how the framework can be applied to projects and programmes. The third part provides guidelines for the people who will guide organizations through the process of change towards becoming inclusive of persons from marginalized groups

Mental health assessments in refugees and asylum seekers: evaluation of a tablet-assisted screening software

MORINA, Naser
et al
October 2017

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Mental health problems resulting from persecution and forced migration are very common among refugees and asylum seekers and evolve into a major public health challenge. Language barriers often prevent timely access to appropriate health care, leading to chronic trajectories and abortive social integration. Tools for multilingual screening and assessment could be of great benefit for this particularly vulnerable population as well as for policy makers. This study aimed at testing the reliability, feasibility and usability of the Multi-Adaptive Psychological Screening Software (MAPSS), a newly developed Audio Computer-Assisted Self-Interview Software (ACASI) for touchscreen devices, for screening purposes in a clinical setting. In a randomized cross-over design including both MAPSS and paper-pencil clinician-administered interviews, 30 treatment-seeking refugees completed clinical measures and a feasibility questionnaire to rate the user interface of MAPSS. Five professionals performed given tasks in MAPSS and completed usability questionnaires for the administration interface.

Conflict and Health 2017 11:18

https://doi.org/10.1186/s13031-017-0120-2

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 

A guide for ensuring equity and inclusion in education

UNESCO
July 2017

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This guide is intended to support countries in embedding inclusion and equity in educational policy. It supports Sustainable Development Goal (SDG) 4 on education calls for inclusive and equitable quality education and lifelong learning opportunities for all by 2030. The guide is intended for use primarily by key government education policy-makers working with key stakeholders. The guide provides an assessment framework that can serve to: review how well equity and inclusion currently figure in existing policies; decide which actions are needed to improve policies and their implementation towards equitable and inclusive education systems; and monitor progress. The guide includes evidence that informs the assessment framework, examples of initiatives that are contributing to more inclusive and equitable education systems in different parts of the world, and recommendations for further reading. 

Visual health screening by schoolteachers in remote communities of Peru : implementation research.

LATORE-ARTEARRGA, Sergio
et al
September 2016

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An assessment was carried out of the adaptation and scaling-up of an intervention to improve the visual health of children by training teachers in screening in the Apurimac region, Peru. In a pilot screening programme in 2009–2010, 26 schoolteachers were trained to detect and refer visual acuity problems in schoolchildren in one district in Apurimac. To scale-up the intervention, lessons learnt from the pilot were used to design strategies for: (i) strengthening multisector partnerships; (ii) promoting the engagement and participation of teachers and (iii) increasing children’s attendance at referral eye clinics. Implementation began in February 2015 in two out of eight provinces of Apurimac, including hard-to-reach communities. An observational study of the processes and outcomes of adapting and scaling-up the intervention was made. Qualitative and quantitative analyses were made of data collected from March 2015 to January 2016 from programme documents, routine reports and structured evaluation questionnaires completed by teachers. Partnerships were expanded after sharing the results of the pilot phase. Training was completed by 355 teachers and directors in both provinces, belonging to 315 schools distributed in 24 districts. Teachers’ appraisal of the training achieved high positive scores. Outreach eye clinics and subsidies for glasses were provided for poorer families. 

 

Bulletin of the World Health Organization, Volume 94, Number 9, September 2016, 633-708

http://dx.doi.org/10.2471/BLT.15.163634

OPERA framework

July 2016

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"A guiding lens for CESR's national enforcement work, the OPERA framework allows an assessment that triangulates outcomes, policies and resources to provide a much fuller picture of what a state is doing to promote the realization of specific rights. Importantly, it traces economic and social deprivations and disparities back to the actions or omissions of the state, to make the case that they constitute an injustice and a violation of human rights."

‘First, do no harm’ : are disability assessments associated with adverse trends in mental health? A longitudinal ecological study

BARR, B
et al
November 2015

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“In England between 2010 and 2013, just over one million recipients of the main out-of-work disability benefit had their eligibility reassessed using a new functional checklist—the Work Capability Assessment. Doctors and disability rights organisations have raised concerns that this has had an adverse effect on the mental health of claimants, but there are no population level studies exploring the health effects of this or similar policies… Here the researchers used multivariable regression to investigate whether variation in the trend in reassessments in each of 149 local authorities in England was associated with differences in local trends in suicides, self-reported mental health problems and antidepressant prescribing rates, while adjusting for baseline conditions and trends in other factors known to influence mental ill-health”

 

Journal of Epidemiology & Community Health, doi:10.1136/jech-2015-206209

Understanding the interaction of competence standards and reasonable adjustments

HEWLETT, Katherine
NIGHTINGALE, Christine
STEVENS, Tony
July 2015

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“Higher education institutions (HEIs) have responsibility for developing non-discriminatory competence standards, and designing a study programme to address these competence standards. HEIs also have the responsibility to ensure that assessment methods address the competence standards. Adjustments to ways that competence standards are assessed may be required so that disabled students are not put at a disadvantage in demonstrating their achievement. This guidance aims to support HEIs meet these institutional and legal responsibilities, and promote disability equality” by providing information and examples on key areas. The guidance will be of use to all staff involved in developing and assessing competence standards

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

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

Disability inclusion in the Syrian refugee response in Lebanon

PEARCE, Emma
July 2013

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This report presents the key findings and recommendations from a four-week field assessment conducted by the Women's refugee Commission in Spring 2013 in northern and eastern Lebanon. Key findings are shared about the situation of Syrian refugees with disabilities, and recommendations are provided to the United Nations Refugee Agency (UNHCR) and partners.

Teachers for all : inclusive teaching for children with disabilities

LEWIS, Ingrid
BAGREE, Sunit
July 2013

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This paper provides detail about the context and scale of the challenges of the global shortage of inclusive teachers for children with disabilities. It then outlines five broad issues that need addressing if we are to prepare, recruit and support enough teachers, with appropriate skills, to educate every child, including those with disabilities

Employment assessment toolkit

ROYAL NATIONAL INSTITUTE OF BLIND PEOPLE (RNIB)
2013

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"The toolkit enables employment advisors who work with blind and partially sighted people to gain a clear understanding of what your client’s aspirations are in relation to employment, and what types of support and development are needed to help fulfil these aspirations. It provides a way of having a structured conversation with clients...The questions in the toolkit should be self-explanatory. They are arranged under different sub-sections: employment activity, current job search activity, access to information, computer skills, independent travel, vision, health related issues, and target job"
Note: It is recommended to use this toolkit in conjunction with the action plan development kit; the toolkit is available to download in four different formats: PDF, Word, Word non-breaking table, and Word text only

Employment assessment toolkit : action plan development

ROYAL NATIONAL INSTITUTE OF BLIND PEOPLE (RNIB)
2013

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"This document is intended to help the employment advisor use the important information collected from the assessment tool to develop an action plan for your client. The process has two stages: Scoring the screening questions, Action plan development. The employment advisor should initially carry out these tasks after completing the assessment tool. It is important to then discuss the score and plan with your client before finalising. The action plan will then be the basis of the on-going work with your client until it is agreed to reassess the situation"
Note; This resource is available in pdf and word formats

Education for all : or just those easier to reach?

GREGORY, Peter
SUTHANTHIRARAJ, Kavitha
VAN ZOEREN. Peter
2012

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"This report examines the extent to which issues of gender and disability are considered in the design, development and monitoring of education programs undertaken by AusAID, the World Bank and the Asian Development Bank in Indonesia, Papua New Guinea and the Philippines. This is examined through a dual analytical approach involving assessment of institutional education policy and design documents to determine gender and disability policies and priorities, coupled with a review of operational documents ie: planning documents, evaluation reports and independent evaluation documents"

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