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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.

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

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SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Working with persons with disabilities in forced displacement

UN HIGH COMMISSIONER FOR REFUGEES (UNHCR)
2019

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This note has been updated from its 2011 release and provides UNHCR and partners with specific guidance on meeting the protection needs of a diversity of persons with disabilities. While the document refers mainly to refugees, it applies to all of UNHCR’s persons of concern, including refugees, asylum seekers, internally displaced persons, returnees, and stateless persons.

This note provides guidance on: who persons with disabilities are; key principles (rights based approach, inclusion, participation and non-discrimination) and cross-cutting actions. 

DFID’s strategy for disability inclusive development 2018-23

December 2018

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The UK Department for International Development (DFID)'s vision is a world where all people with disabilities, women, men, girls and boys, in all stages of their lives, are engaged, empowered and able to exercise and enjoy their rights on an equal basis with others, contributing to poverty reduction, peace and stability. A world where no-one is left behind.

Over the next five years DFID will prioritise four strategic pillars for action: (i) inclusive education, (ii) social protection, (iii) economic empowerment, and (iv) humanitarian action. To complement this focus DFID are adopting three cross-cutting areas, vital to disability inclusion, which will be consistently and systematically addressed in all of their work: (v) tackling stigma and discrimination; (vi) empowering girls and women with disabilities; and (vii) access to appropriate assistive technology.

DFID have introduced a new set of standards for all DFID business units to meet. The standards require all country offices and departments to; review their leadership and culture, engage with people with disabilities, influence others, adapt programming and improve data and evidence.

Children with disabilities in situations of armed conflict - a discussion paper

THOMAS, Edward
et al
November 2018

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During armed conflict, children with disabilities are caught in a vicious cycle of violence, social polarization, deteriorating services and deepening poverty. Global estimates suggest there are between 93 million and 150 million children with disabilities under the age of 15.Given that disability is often not reported due to stigma there is reason to believe actual prevalence could be much higher. Although efforts to ensure the fulfilment of their rights have improved, girls and boys with disabilities continue to remain among the most marginalized and excluded segment of the population. This is amplified during situations of armed conflict. The barriers to full participation they face on a day-to-day basis are intensified and compounded when infrastructure is destroyed, and services and systems are compromised and made inaccessible. This results in the further exclusion and marginalization of children with disabilities, and prevents them from accessing schooling, health and psychosocial support, or a means of escape from conflict.

 

When systems and services break down, children are also left more susceptible to violence. Injuries sustained by many children during armed conflict may also lead to long-term impairments. There are six grave violations of children’s rights and protection in armed conflict that are on the agenda of the United Nations (UN) Security Council; killing and maiming, recruitment and use of children, rape or other sexual violence, abduction, attacks on schools or hospitals, and denial of humanitarian access. Governments around the world have committed themselves to respect, promote, and fulfil the rights of children with disabilities, including in situations of armed conflict, and progress is being made. Efforts by a broad range of actors to implement the CRPD, CRC and other human rights instruments include the development of standards to address the rights and needs of persons with disabilities in humanitarian crises, and guidance on making humanitarian response, development and peacebuilding more inclusive. Efforts to improve the collection and use of data concerning children and adults with disabilities are also underway. Yet, as this discussion paper makes clear, much more needs to be done. Investments in disability-inclusive humanitarian action and recovery from crises will pay off, contributing towards a dividend of peace built on greater equality, tolerance and justice. 

3rd World Disability & Rehabilitation Conference (WDRC 2018) - Book of abstracts

O'CONNOR, Loren
Ed
November 2018

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The 3rd World Disability & Rehabilitation Conference 2018 was held from 12th and 13th November 2018 in Kuala Lumpur, Malaysia. People with disabilities and researchers, practitioners, policy makers, industry experts, university faculty and organizations along with advocates and volunteers working with people with disabilities participated and presented their original and unpublished results of conceptual, constructive, empirical, experimental, experiential or theoretical work through abstract and poster presentation. Total 33 participants presented their abstract and poster throughout this conference. The theme of WDRC 2018 was “Global advocacy and rights of people with disabilities”

Promote, Protect and Monitor 2017 Update survey on Article 33 (2) of the Convention on the Rights of Persons with Disabilities

AICHELE, Valentin
August 2018

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Article 33 (2) of the CRPD requires state parties to have a structural framework in place to promote, protect and monitor the implementation of the Convention on the Rights of Person with Disabilities (CRPD) at the national level. This “2017 Update Survey”, conducted by the German Institute for Human Rights, was done to identify the current situation how state parties implement these provisions. National Human Rights Institutions (NHRIs) from all continents participated in the survey. A comparison of the results of the 2017 Update Survey with those of similar survey conducted in 2011 indicates that there is a positive trend towards the strengthening of the role of National Human Rights Institution in the context of the CRPD in terms of numbers – either as the bearers of sole responsibility or responsibility shared with others. 

Annexes are provided containing concluding observations, the questionnaire used and a table of survey responses.

Young persons with disabilities: Global study on ending gender-based violence, and realising sexual and reproductive health and rights

McCLOSKEY, Megan
MEYERS, Stephen
July 2018

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This study provides an analysis on the situation of young persons with disabilities concerning discrimination and gender-based violence, including the impact on their sexual and reproductive health and rights. It also provides an assessment of legal, policy and programming developments and specific good practices in service delivery as well as best-standard prevention and protection measures. Finally, policy and programming recommendations are provided to assist in greater promotion of the rights of young persons with disabilities, with a particular emphasis on preventing and responding to gender-based violence, and realizing sexual and reproductive health and rights.

Monitoring employment rights of people with disabilities in Kathmandu, Nepal, Holistic report 2018

PRASAI, Sagar
PANT, Aashish
June 2018

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This report presents the results of a monitoring project on the employment situation of persons with disabilities in Nepal. This study is part of a larger initiative called the DRPI AWARE (Asian Workplace Approach that Respects Equality) project. The project is a collaborative five-year initiative that is altering the perspective on employment of persons with disabilities in Nepal as well as India, and Bangladesh. DRPI methodology has been adapted to specifically target the monitoring of Article 27 – Right to Work and Employment of the CRPD. Participants with disabilities have focused specifically on the issues and statistics surrounding disability and employment. In each of the three monitoring sites (Hyderabad, Dhaka, Kathmandu), Monitors used an interview and focus group guide to capture a specialized data set and analyze violations of the right to work and employment. The interview and focus group guides were designed to capture various components of the employment process; including experiences of people with disabilities while job searching, during the interview process, during the training process, and on the job. People with disabilities themselves carried out the data collection, analyzed the data, and wrote this monitoring report ensuring these activities were by people with disabilities, for people with disabilities. Monitoring results have been used to identify barriers to employment, which will help direct actions for increasing sustainable employment for persons with disabilities. The module developed during this project may be used in other regions.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
et al
May 2018

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"Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. 

Disability and Rehabilitation: Assistive Technology 
Volume 13, 2018 - Issue 5: Position Papers from the First Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit

This issue has 7 papers from the GREAT summit

https://doi.org/10.1080/17483107.2018.1471169

“They Stay until They Die” A lifetime of isolation and neglect in institutions for people with disabilities in Brazil

RIOS-ESPINOSA, Carlos
et al
May 2018

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This report documents a range of abuses against children and adults with disabilities in residential institutions in Brazil. The research is based on direct observations during visits to 19 institutions (known in Brazil as shelters and care homes), including 8 for children, as well as 5 inclusive residences for people with disabilities. In addition, Human Rights Watch researchers interviewed 171 people, including children with disabilities and their families, adults with disabilities in institutions, disability rights advocates, representatives of non–governmental organizations, including disabled persons organizations, staff in institutions, and government officials.

 

Research was carried out between November 2016 and March 2018 in the states of São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

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This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

The case for investment in accessible and inclusive WASH

PRYOR, Wesley
et al
April 2018

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Using current evidence and testimony from more than 60 WASH experts in 30 countries, this technical paper highlights evidence to argue that accessible and inclusive WASH is achievable at low cost, by using universal design, community-driven change, and existing knowledge, expertise and methods. The paper provides starting points to understand the impact of and case for accessible and inclusive WASH.

Disability Equality: In Theory and Practice. Social Inclusion, volume 6, issue 1 (2018)

PRIESTLEY, Mark
WADDINGTON, Lisa
Eds
March 2018

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This special issue of this journal includes the following papers:

  • Achieving Disability Equality: Empowering Disabled People to Take the Lead
  • Dis-Equality: Exploring the Juxtaposition of Disability and Equality
  • Leveraging Employer Practices in Global Regulatory Frameworks to Improve Employment Outcomes for People with Disabilities
  • Equality of What? The Capability Approach and the Right to Education for Persons with Disabilities
  • Reasonable Accommodation as a Gateway to the Equal Enjoyment of Human Rights: From New York to Strasbourg
  • Disability, Access to Food and the UN CRPD: Navigating Discourses of Human Rights in the Netherlands
  • Rehabilitation as a Disability Equality Issue: A Conceptual Shift for Disability Studies?
  • Inclusions and Exclusions in Rural Tanzanian Primary Schools: Material Barriers, Teacher Agency and Disability Equality
  • Education, Work, and Motherhood in Low and Middle Income Countries: A Review of Equality Challenges and Opportunities for Women with Disabilities
  • Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research


 

African Journal of Disability Vol 7 (2018) - Special collection: Disability and inclusion in Africa - The role of assistive technology

2018

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This journal provides

  • Nine original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors. 
  • Three review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities.
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

How law protects persons with disabilities in armed conflict

INTERNATIONAL COMMITTEE OF THE RED CROSS (ICRC)
December 2017

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This paper identifies commonalities between international humanitarian law (IHL) and the Convention on the Rights of Persons with Disabilities (CRPD) and emphasizes certain specific contributions of IHL to the protection of persons with disabilities in armed conflict.

It is hoped that this legal analysis will contribute to current efforts by the ICRC and the International Red Cross and Red Crescent Movement, as well as other actors, to operationalise better inclusion and participation of persons with disabilities in carrying out humanitarian activities in armed conflict

Human rights of refugee-survivors of sexual and gender-based violence with communication disability

MARSHALL, Julie
BARRETT, Helen
November 2017

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The main aims of this project were to document current knowledge about the intersectionality between sexual and gender-based violence (SGBV), communication disability and refugees, to identify any reported good practice, and to begin to understand and describe the challenges to supporting refugee-survivors of SGBV with communication disability, in Rwanda. The project involved 54 participants, including 50 humanitarian and partner organisation staff and four carers of refugees with communication disabilities, from two locations (camp-based and urban refugees).

 

International Journal of Speech-Language Pathology,  20:1, 44-49,

DOI: 10.1080/17549507.2017.1392608

International humanitarian law and persons with disabilities

INTERNATIONAL COMMITTEE OF THE RED CROSS
July 2017

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International humanitarian law (IHL) is a set of rules that, in times of armed conflict, seeks – for humanitarian reasons – to protect persons who are not, or are no longer directly participating in hostilities, and to restrict means and methods of warfare. IHL requires parties to armed conflicts to afford special respect and protection to persons with disabilities and helps ensure their inclusion. A number of weapons-related treaties aims to prevent certain disabilities from occurring by prohibiting the use of particular weapons and reducing the dangers they pose. They also seek to ensure that victims receive appropriate assistance.


In addition to IHL, international human rights law (IHRL) – particularly the Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol – contains important protections. For example, the CRPD recognizes States Parties' obligations under, inter alia, IHL and IHRL and obliges States Parties to ensure the protection and safety of persons with disabilities during armed conflict (Art. 11).

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