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Database of disability and health information resources
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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.

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Every learner matters: Unpacking the learning crisis for children with disabilities

McCLAIN-NHLAPO, Charlotte
et al
June 2019

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This paper was developed by the World Bank in partnership with Leonard Cheshire and Inclusion International. It is an attempt to add knowledge to the current understanding of the importance of learning achievements, with a focus on children with disabilities. While the premise is that inclusive education refers to the inclusion of all children, the focus of this paper is on children with disabilities.

The aim of the paper is to:

  • Provide an evidence-based review of educational participation of children with disabilities.
  • Establish a case for focusing on learning achievements for students with disabilities.
  • Take stock of current mechanisms of measurement of learning outcomes and review their inclusivity.
  • Explore evidence of practice and systems which promote disability-inclusive learning for all. 

Four case studies are provided - from Pakistan, South Africa, Canada and UK.

Progress on drinking water, sanitation and hygiene 2000–2017 - Special focus on inequalities

United Nations Children’s Fund (UNICEF)
World Health Organization (WHO)
June 2019

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The WHO/UNICEF Joint Monitoring Programme for Water Supply, Sanitation and Hygiene presents updated national, regional and global estimates for water, sanitation and hygiene (WASH) in households in its 2019 update report, Progress on Household Drinking Water, Sanitation and Hygiene 2000–2017: Special focus on inequalities. The report shows that in 2017:

The population using safely managed drinking water services increased from 61 per cent to 71 per cent
The population using safely managed sanitation services increased from 28 per cent to 45 per cent
60 per cent of the global population had basic handwashing facilities with soap and water at home

The report also focuses on inequalities between and within countries and reveals populations most at risk of being left-behind.

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/

Coordination between health and rehabilitation services in Bangladesh: Findings from 3 related studies

PRYOR, Wesley, HASAN Rajib
MARELLA, Manjula
NGUYEN, Liem
SMITH, Fleur
JALAL, Faruk Ahmed
CHAKRABORTY, Ripon
HAQUE, Mazedul
MOSTOFA, Golam
HASAN, Rajib
April 2019

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The unmet need for rehabilitation is profound and is likely to worsen as population health shifts towards longer lives lived with more ill-health and disability. The WHO Global Action Plan on Disability and the Rehabilitation 2030 framework [1] call for quality evidence to inform targeted responses.
The intent of this work is to examine six IDSCs (Integrated Disability Service Centres) in detail but to use the results to inform new activities through the network of more than 100 Integrated Disability Service Centres, with potential to influence practice in other services. As such, results of this work have the potential to directly inform policy decisions concerning future investments in rehabilitation services in Bangladesh and bring awareness to key stakeholders on current challenges and potential solutions.

Research was conducted during March-October 2018 in Kurigram, Tangail, Manikgonj, Dhaka and Narsingdi districts of Bangladesh to map out the current trends and determinants of good coordination
between health and rehabilitation, emphasising quantitative measures of: timeliness, continuity, acceptability, availability and integration

Local economic and inclusive development; a toolkit for replication

Humanity & Inclusion
CAMID
The Employers' Federation of Ceylon
2019

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This replication guidebook is a tool that aims to highlight the link between social exclusion and poverty and is based on the premise that a country cannot achieve its development targets, if a section of its people is left behind.

 

This guidebook aims to show practitioners practical ways of working on economic development that inclusive of socially excluded groups such as women, people with disabilities, people living in poverty, etc. It provides corresponding concepts, explains the steps and suggests tools that may help practitioners use and adapt to their context. The context of this book are based on field level experience of the project team of the Inclusive Economic Development project.

India inclusion summit 2018

March 2019

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India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

“On the Margins” Education for children with disabilities in Kazakhstan

RITMANN, Mira
March 2019

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Thisd report presents findings of research into report into progress towards inclusive education for disabled children in Kazakhstan and also presents recommendations for future progress.

Field research for this report was carried out between September 2017 and December 2018. The report is based on over 150 interviews with children and young adults with disabilities, their families, and disability rights activists, in multiple cities in Kazakhstan: Almaty, Astana, Kostanay, Kyzylorda, Shymkent, and Taldikorgan. Human Rights Watch researchers visited one PMPK office, five inclusive schools, and four special schools in Almaty and one inclusive school in Kyzylorda. Human Rights Watch also visited three neurological-psychiatric institutions for children in Almaty, Karaganda, and Shymkent. Human Rights Watch met and corresponded with officials from the Ministry of Labor and Social Protection and exchanged letters with the Ministries of Education and Health, and with the Almaty City Administration.

Resources for business owners with disabilities

GRAVER, Sarah
February 2019

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A USA based blog providing a guide for entrepreneurs and business owners with disabilities. It includes information on business plans, marketing strategies, funding, training and networking. The US PASS (Plan to Achieve Self-Support) program and the requirements for it are outlined. There is a list of resources for people living with specific disabilities who are interested in self-employment including people with visual, hearing, developmental and mobility disabilities.

Disability-themed emojis approved for use

British Broadcasting Company (BBC)
February 2019

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New accessibility-themed emojis including characters with hearing aids, wheelchairs, prosthetic limbs, white "probing" canes and guide dogs are to be introduced.

Their inclusion in 2019's official list means many smartphones should gain them in the second half of the year

CII launches the India Business Disability Network, a unique platform for companies to enable inclusion

ILO Global Business and Disability Network
February 2019

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The Confederation of Indian Industry (CII) launched the India Business Disability Network (IBDN) at the National Conference on ‘Mainstreaming Inclusivity & Accessibility – Enabling Industry’ in Delhi on 21 January 2019.

The IBDN is a National Business and Disability Network that promotes and facilitates an inclusive, accessible and a barrier-free workplace within the corporate sector, and set up in joint partnership with the International Labour Organisation (ILO) and the Employers’ Federation of India (EFI). IBDN is a one stop solution to share learnings and best practices, create context-based solutions, facilitate partnerships, facilitate inclusion, and create & dissemination knowledge

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Using the Washington Group Questions in humanitarian action (learning toolkit on disability data collection)

January 2019

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Humanity & Inclusion has created a learning toolkit to improve the collection of quality data on persons with disabilities and improve its use by humanitarian organisations.

 

Until now, existing guidance on the Washington Group Questions (WGQs) has been specific to national data collection efforts on persons with disabilities. To address the lack of guidance for humanitarian actors, Humanity & Inclusion (HI) is launching a learning toolkit on collecting data in humanitarian action, which includes an e-learning, a training pack for enumerators and various supporting resources that can all be found on the HI website.

 

Gathering evidence on the use of the WGQs in humanitarian action:

To respond to the need to collect, analyse and use data on persons with disabilities in humanitarian action, HI has been implementing a project, funded by the UK Department for International Development, to test and assess the use of the WGQs in humanitarian action. An action-research was carried out with over 30 humanitarian partners in Jordan, the Democratic Republic of Congo and the Philippines, with the evidence used to develop learning materials.

 

Development of a learning toolkit for humanitarian actors:

In addition to the findings of the action-research, HI gathered inputs from over 30 humanitarian organisations working in 22 countries to inform the design of the learning toolkit. Specific focus was given to the development of open source materials that would be accessible with screen readers, on mobile phones, and in hard to reach locations. The content was then informed by selected subject matter experts in inclusive humanitarian action and data collection.

 

What is included in the toolkit?

An e-learning on Collecting Data for the Inclusion of Persons with Disabilities in Humanitarian Action – The Application of the WGQs providing an entry point for humanitarian actors who would like to understand how to plan for and use the WGQs.

A Training Pack for enumerators giving guidance, session plans and activities to deliver training on using the WGQs (developed in collaboration with RedR UK).

Supporting resources providing practical guidance on the application of the WGQs in humanitarian contexts.

 

Who is this for?

The toolkit is tailored to a full range of humanitarian actors who would like to understand how to use the WGQs in their own work and organisations. The content has also been designed to provide technical guidance for programme and technical staff: with a practical focus on different topics relevant for the use of the WGQs –from the human rights based approach that underpins them, to their planning, use and the analysis of the data produced.

 

Where is the Toolkit available?

The e-learning is available now on disasterready.com and on Kayaconnect.org (accessible for mobile phones and tablets). Organisations interested in hosting the e-learning are welcome to contact the project team members. Toolkit resources and more information about the project are available for download in the project webpage.

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.

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:

 

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

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