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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.

Communication Matters!

Light for the World
January 2019

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The research Communication Matters! shows which obstacles persons with disabilities face in accessing public information and services. The research took place in three districts in the province of Pursat. 1171 persons with disabilities in 229 villages are reached.

Due to the research, many persons with disabilities were able to share their stories for the first time. Many persons were also found for the first time, because the team made an effort to visit everyone in the village.

Zero Project Report 2019: Independent living and political participation

FEMBEK, Michael
January 2019

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The Zero Project Report 2019 focuses on Article 19 (Living independently and being included in the community) and Article 29 (Participation in political and public life) of the UN CPRD, as well as related topics such as Article 12 (Equal recognition before the law) and Article 13 (Access to justice)

For 2019 the Zero Project selected 66 Innovative Practices and 10 Innovative Policies from 41 countries that positively impact the rights of persons with disabilities in their ability to live more independently and to take part in political life

 

This Report is composed of five main sections, summarizing the annual research, followed by an Annex:

• Executive Summary, including background information on this year’s research topic and the Zero Project methodology

• Innovative Polices and Practices: Fact Sheets and Life Stories

• Description of the Zero Project–Impact Transfer programme

• Description of EU-grant-funded TOPHOUSE projects

• A summary of this Report in easy language

• An Annex listing all Zero Project network members active in 2018–2019

The Zero Project Report is also available on the Zero Project Website in an accessible pdf format.

 

Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review. Campbell Systematic Reviews 2019:3

FLEMING, Padraig
et al
January 2019

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This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

 

This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

 

DOI 10.4073/csr.2019.3

2018 Annual Disability Statistics Compendium

THE REHABILITATION RESEARCH AND TRAINING CENTER ON DISABILITY AND DEMOGRAPHICS (StatsRRTC)
January 2019

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The Annual Disability Statistics Compendium and its complement, the Annual Disability Statistics Supplement, are summaries of statistics about people with disabilities and about the government programs which serve them. The Compendium, available both in hard copy and online (at https://www.disabilitycompendium.org) presents key overall statistics on topics including the prevalence of disability, employment among persons with disabilities, rates of participation in disability income and social insurance programs, as well as other statistics. The Annual Disability Statistics Supplement, only available online (also at https://www.disabilitycompendium.org), presents tables with over 150 additional categorizations of data for each section highlighted in the Compendium. The 2018 Annual Disability Compendium and Supplement were reviewed and updated for accessibility this year. 

 

A companion Annual Report is available, providing graphic representations of key findings. The Annual Report highlights trend data related to specific tables in the Compendium and Supplement

Realisation of sustainable development goals by, for and with persons with disabilities: UN flagship report on disability and development 2018

UNITED NATIONS DEPARTMENT FOR ECONOMIC AND SOCIAL AFFAIRS (UNDESA)
December 2018

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This report represents the first UN systemwide effort to examine disability and the Sustainable Development Goals (SDGs) of the 2030 Agenda for Sustainable Development at the global level. The report reviews data, policies and programmes and identifies good practices; and uses the evidence it reviewed to outline recommended actions to promote the realization of the SDGs for persons with disabilities. Over 200 experts from UN agencies and International Financial Institutions, Member States and civil society, including research institutions and organizations of persons with disabilities, contributed to this report. The report covers new areas for which no global research was previously available, for example, the role of access to energy to enable persons with disabilities to use assistive technology. It also contains the first global compilation and analysis of internationally comparable data using the Washington Group on Disability Statistics short set of questions. Reviews of legislation from 193 UN Member States were conducted and analysed for this report to highlight good practices and to assess the current status of discriminatory laws on voting, election for office, right to marry and others

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.

Diagnostic study on Disabled Peoples’ Organisations and National Union of Organisations of the Disabled in Liberia

DEEPAK, Sunil
HARRIS, Naomi
November 2018

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A diagnostic study was carried out by a consultant to the DASU project in collaboration with the national umbrella organisation “National Union of Organizations of the
Disabled” (NUOD) to assess the institutional capacities of Disabled Peoples’ Organizations (DPOs) in Liberia. The study involved DPOs from the national capital Monrovia and in three counties – Bong, Grand Gedeh and Nimba.
The study included an initial Desk Review, collection of case studies from the field and visits to the counties to meet the county DPOs. Following these, a workshop was organised
in Monrovia in which representatives of NUOD and the concerned DPOs took part. The workshop looked at the strengths and challenges faced by NUOD and DPOs, focusing on the skills needed for stronger and active DPO leadership.

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. 

My right is our future the transformative power of disability-inclusive education. 03 Series on disability-inclusive development

CBM International
November 2018

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This publication explores the challenges of disability-inclusive education systems and provides practical support suggestions that can better meet both the general and specific learning needs of all children, including those with disabilities. It recognises that inclusive education is a complex process and aims to help governmental and non-governmental actors to navigate the most suitable pathways to change.

Topics include: Individual and systemic approaches; non-negotiable commitments; collaboration; long-term process; understanding and awareness; stakeholder empowerment and engagement; Innovation: accessibility and reasonable accommodation; Innovation: teachers and teacher education; Innovation: transition and lifelong learning; and organising inclusive education systems

15 case studies are provided

Disability data collection: A summary review of the use of the Washington Group Questions by development and humanitarian actors

QUIGLEY, Nolan
et al
October 2018

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The Washington Group Questions on Disability are rapidly emerging as the preferred data collection methodology by the global community for national data collection efforts on disability. However, more and more development and humanitarian actors are now using the methodology in their own data collection efforts. This is beyond the original purpose of the questions, which was to generate usable data for governments. Leonard Cheshire and Humanity & Inclusion, two international charities focussed on disability and inclusion, have worked together to share learnings of recent research studies. These studies aim to understand how the Washington Group Questions (WGQ) have been used by development and humanitarian actors and the impact of using the methodology. This summary report outlines the key findings, analysis and conclusions about the application of the Washington Group Questions in a range of contexts. The report concludes with a number of recommendations for different stakeholders.

Mainstreaming disability and making WASH programmes inclusive

ENFIELD, Sue
October 2018

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This rapid review synthesises evidence and literature on approaches that have worked in mainstreaming the disability agenda in WASH programming. It begins by exploring the overview of approaches to including disabled people in WASH programming and continues to discuss the barriers to access and consequences. In this section, there are specific and important WASH issues being emphasised including Menstural Hygiene Management (MHM), incontinence, Lymphatic Filariasis and Leprosy and high-density populations. Final section of the review discuss about practical guidance for inclusive WASH programming including the cost of inclusion that needs to be taken into consideration.

 

K4D helpdesk reports provide summaries of current research, evidence and lessons learned. This report was commissioned by the UK Department for International Development

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

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.

Disability and climate resilience research project

KETT, Maria
COLE, Ellie
August 2018

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This 14-month exploratory research project aimed to increase the understanding of the links between disability and climate resilience, and in turn to support the delivery of policy and programme work that builds the resilience of people with disabilities to climate shocks and stresses. 

 

The research comprises: an extensive literature review to identify the current evidence and gaps; a global online survey to identify current practices being implemented in the field around climate change and climate-related disasters, and the extent to which disability issues are addressed in programming; policy analyses, complemented by key informant interviews with policymakers and practitioners; and focus group discussions with people with disabilities in climate-impacted areas of Bangladesh and Kenya. This report synthesises the results of the desk- and field-based research, and outlines implications of the findings for policy and programming and identifies recommendations for further action. It is hoped that the findings highlighted in this report can be extrapolated to develop more disabilityinclusive practice and will also be applicable for other contextually marginalised people

Improving social inclusion and empowerment for people with disabilities in low- and middle-income countries: why does it matter and what works?

WHITE, Howard
SARAN, Ashrita
POLLOCK, Sarah
KUPER, Hannah
July 2018

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The aim of the Rapid Evidence Assessment (REA) is to provide an assessment of the effectiveness of interventions to improve social inclusion and empowerment for people with disabilities in low- and middle-income countries (LMICs). The studies included in this REA are taken from the Disability EGM prepared by the Campbell Collaboration for DFID under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. The REA focused on studies identified by the EGM process that included ‘social inclusion’ or ‘empowerment’ as study outcomes and used the World Health Organization CBR matrix as a framework to categorise the different interventions and outcomes considered by the studies available. Evidence limitations and gaps were identified. 

There were 16 eligible primary studies, including studies conducted in 12 countries: Bangladesh (two studies), Brazil, Chile, China (two studies), Ethiopia, India (three studies), Kenya (two studies), Malaysia, Thailand, Turkey, Uganda, and Vietnam (two studies). Five of the studies concern interventions for people with physical or sensory impairments, nine for people with mental health or neurological conditions, and two for all disability types.

Improving educational outcomes for people with disabilities in low and middle-income countries: why does it matter and what works?

KUPER, Hannah
SARAN, Ashrita
WHITE, Howard
July 2018

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The studies included in this Rapid Evidence Assessment (REA) are taken from the Disability Evidence and Gap Map (EGM) prepared by the Campbell Collaboration for the UK Department for International Development (DFID) under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. Qualitative studies, process evaluations, and non-impact evaluations (e.g. crosssectional surveys) were not eligible for inclusion. Quality grading was applied to the literature, so that assessment could be made of where there was strong evidence and where evidence was limited or missing. The studies were grouped by education sub-outcomes related to different stages in education across the life course; that is: early intervention, primary education, secondary education, non-formal education, and lifelong learning. 

 

There were 24 eligible individual studies, including studies conducted in the Middle East (10), Asia (7), and Africa (5), one from Latin America, as well as one multicountry study

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

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This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

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