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#COVIDdisability: Disability-related resources for families

CANADIAN ASSOCIATION FOR COMMUNITY LIVING (CACL)
2020

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A series of disability-related resources related to the COVID-19 pandemic for people with intellectual disabilities and their families.

 

Topics include:

  • Trusted COVID-19 Information
  • Plain Language Information
  • COVID-19 and Discrimination 
  • Information for Caregivers
  • COVID-19 and Government Support
  • COVID-19 and Mental Health
  • Accessible Information on COVID-19
  • Emergency Preparedness and People with a Disability

The missing billion - Access to health services for 1 billion people with disabilities

KUPER, Hannah
HEYDT, Phyllis
July 2019

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One billion people around the world live with disabilities. This report makes the case that they are being “left behind” in the global community’s work on health. This lack of access not only violates the rights of people with disabilities under international law, but UHC (Universal Health Care) and SDG 3 cannot be attained without better health services for the one billion people with disabilities. 

Health and healthcare are critical issues for people with disabilities. People with disabilities often need specialized medical care related to the underlying health condition or impairment (e.g., physiotherapy, hearing aids). They also need general healthcare services like anyone else (e.g., vaccinations, antenatal care). On average, those with disabilities are more vulnerable to poor health, because of their higher levels of poverty and exclusion, and through secondary conditions and co-morbidities. People with disabilities therefore may require higher levels of prevention, diagnosis, and treatment services. However, health services are often lower quality, not affordable, and inaccessible for people with disabilities. In many situations these barriers are even more significant for women with disabilities, compared to men with disabilities.

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.

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

Report on the extent to which Rwanda’s implementation of the SDGs complies with its obligations under the CRPD

RWANDA UNION OF THE BLIND (RUB)
April 2019

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This report aims to examine the extent to which Rwanda’s activities aimed at achieving the goals and targets set out in the SDGs include and consider people with disabilities and comply with its commitments under the CRPD. 

Information for this report was obtained from two sources: the first source was the available documents including government policies, laws and reports, as well as a variety of other documents and reports from other sources. The second source of information was interviews conducted with people with disabilities from three different regions of the country, namely Musanze district, Nyagatare district, and the city of Kigali.

 

This report focuses on five SDGs which were selected after a series of consultations with people with disabilities and their organisations. These are:

Goal 1: End poverty in all its forms everywhere;
Goal 3: Ensure healthy lives and promote well-being for all at all ages;
Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all;
Goal 5: Achieve gender equality and empower all women and girls;
Goal 8: Promote sustained, inclusive and sustainable economic growth, full and productive employment and decent work for all.

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

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.

Epilepsy: a public health imperative

WORLD HEALTH ORGANISATION (WHO)
2019

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This report is the first global report on epilepsy summarising the available evidence on the burden of epilepsy and the public health response required at global, regional and national levels.

This report is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. It is time to highlight epilepsy as a public health imperative, to strongly encourage investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research.

Summary of Iraq national report on Sustainable Development Goals & the CRPD

AL-EZZAWI, Hashem Khalil
ALKhafaji, Mowafaq
2019

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This report was prepared by a team composed of disabilities experts, academics, representatives of disabilities organizations and other concerned organizations, and volunteers with disabilities. A common methodology was developed with friendly organizations and associations operating in the Kurdistan Region, in accordance with the UN Convention and sustainable development goals, as follows

 

1- Forming a steering committee consist of the Iraqi gathering of Iraqi Disabled Organizations (IGDO) and other relevant organizations

2- Reviewing national legislations, laws, regulations and strategies related directly and indirectly to the rights of persons with disabilities and their compatibility with the Convention on the Rights of Persons with Disabilities.

3- Making sure that the report addresses all types of disabilities and covers all services, activities and areas without exception.

4- Making all the required efforts to insure that monitoring process includes positive and negative records concerning rights realization and sustainability.

5- Conducting a field survey of all activities of organizations of persons with disabilities.

6- Identifying gaps related to the rights of persons with disabilities.

7- Organizing a number of focus groups for different types of disabilities.

8- Providing the database of (IGDO) with data and information on persons with disabilities.

9- Conducting field visits to institutions and centers working in the area of disabilities.

10 - Making Interviews with experts, activists, representatives of governmental and international institutions and civil society organizations working in the field of disabilities in Iraq.

 

Research was carried out into progress in relation to eight of the SDGs (1, 3, 4, 5, 8, 11, 16 and 17)

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

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”

Shaping health systems to include people with disabilities. K4D emerging issues report

DEAN, Laura
et al
November 2018

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People with disabilities are at a heightened risk of communicable and non-communicable diseases and these diseases can cause debility and disability. Health needs of these people often extend beyond requiring continual longterm medical support to addressing broader social inequities. Key areas that are likely to be critical in re-orientating health systems from a biomedical approach towards inclusive health systems that are more responsive to the needs of people with debility and disability in low and middle-income countries (LMICs) are offered in this report and cover the following:

 

  • 1. Nothing about us without us: prioritising person-centred health systems
  • 2. Responding to issues of access in mainstreaming disability within health systems
  • 3. Ensuring the provision of specialised services
  • 4. Community based rehabilitation 
  • 5. Improving the collection and use of disability related data against modified legal and policy frameworks
  • 6. Partnerships are paramount
  • 7. Financing and social protection 

Case studies are provided from Sudan, India, Liberia, Uganda and Nigeria

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Disability in North Africa

ROHWERDER, Brigitte
April 2018

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This desk-based research reports explores the experiences of people with disabilities of inclusion and marginalisation in North Africa, and whether this has had an impact on regional/national economies and wider prosperity. 

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Disability, health and human development

MITRA, Sophie
2018

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This open access book introduces the human development model to define disability and map its links with health and wellbeing, based on Sen’s capability approach. The author uses panel survey data with internationally comparable questions on disability for Ethiopia, Malawi, Tanzania and Uganda. It presents evidence on the prevalence of disability and its strong and consistent association with multidimensional poverty, mortality, economic insecurity and deprivations in education, morbidity and employment. It shows that disability needs to be considered from multiple angles including aging, gender, health and poverty. Ultimately, this study makes a call for inclusion and prevention interventions as solutions to the deprivations associated with impairments and health conditions.

 

Chapters include:

  • The Human Development Model of Disability, Health and Wellbeing
  • Measurement, Data and Country Context
  • Prevalence of Functional Difficulties
  • Functional Difficulties and Inequalities Through a Static Lens
  • Dynamics of Functional Difficulties and Wellbeing
  • Main Results and Implications

 

Disability Inclusive Health Technical Advisory Group established by Core Group

2018

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In 2018, CORE Group prioritised a Disability Inclusive Health agenda and established the Disability Inclusive Health Technical Advisory Group (TAG), based on requests from the global practitioner community, to address gaps in disability inclusivity in health programming and advocacy. The Disability Inclusive Health Technical Advisory Group is open to all CORE Group members and associates, as well as non-members.

 

CORE Group’s Interest Groups are convened based on need. The Interest Groups are: Disability Inclusive Health Technical Advisory Group; Humanitarian-Development Task Force; and Noncommunicable Diseases Interest Group.

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

Disability and the Global South, 2018, Vol.5, No. 2

Inclusion of marginalised Aboriginal and Torres Strait Islander peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

TOWNSEND, Clare
McINTYRE, Michelle
LAKHANI, Ali
WRIGHT, Courtney
WHITE, Paul
BISHARA, Jason
CULLEN, Jennifer
2018

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Given the ambiguity surrounding the extent and experience of neurocognitive disability (NCD) among marginalised Aboriginal and/or Torres Strait Islander peoples in Australia, evidence regarding the level and nature of NCD is crucial to ensure equitable access and inclusion into the National Disability Insurance Scheme (NDIS). This paper reports the results of the implementation of The Guddi Protocol (a culturally informed and appropriate screening protocol for Aboriginal and/or Torres Strait Islander peoples) at two locations in Queensland. Results indicated high levels of NCD, and additional qualitative data revealed a number of factors associated with the complex disablement of study participants, namely: i) intergenerational trauma; ii) a social context of disadvantage, marginalisation and exclusion; and iii) the nonidentification of disability. The results are linked to implications for NDIS inclusion for this population, and recommendations are made. Unless the extent and nature of complex disability and the issues surrounding culturally safe policy, and service design and engagement are addressed with and by Aboriginal and Torres Strait Islander peoples, including those who experience complex disablement, marginalised people will continue to be effectively excluded from the NDIS.

 

Disability and the Global South, 2018, Vol.5, No. 2

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