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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.

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.

Protection of civilians in armed conflict (S/2019/373) [EN/AR/RU]

UNHCR SECRETARY GENERAL
May 2019

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The present report is submitted pursuant to the request contained in the statement by the President of the Security Council of 21 September 2018 (S/PRST/2018/18). It also responds to the Council’s requests for reporting on the protection of medical care and on conflict and food insecurity, contained in resolutions 2286 (2016) and 2417 (2018), respectively. Section II provides a summary of achievements and challenges to the United Nations work on protecting civilians over the past 20 years. Section III reviews the current state of the protection of civilians and emphasizes the enduring relevance of the protection agenda 20 years on. Section IV focuses on the central challenge of enhancing respect for the law – the first of three protection priorities identified in the report of 2017 (S/2017/414) and discussed in the report of 2018 (S/2018/462) – with a particular focus on the conduct of hostilities. Section V discusses how the Council and Member States can rise to meet this challenge and, moreover, strengthen the practical impact of the protection agenda in the years ahead.

Making it count: The power of youth advocates in the disability movement

WILM, Suzanne
LEONARD CHESHIRE
HANKS, Phil
May 2019

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The 2030 and Counting pilot project sought to give youth with disabilities a seat at the table on the SDGs – providing them with the tools and confidence they need to become their own agents of change. This report provides an overview of the project, together with learnings and recommendations for the future.

In its pilot year, 2030 and Counting brought together young women and men with disabilities and DPOs from Kenya, the Philippines and Zambia to report on and advocate for their rights through the framework of the SDGs

The project had three consecutive phases: Training, Story gathering (data collection) and Influencing. 

In total, 332 reports were collected between June and September 2018. The highest number of reports were submitted under the theme of Education (44%), followed by Work (33%), and Health (14%). The category of Other, which almost entirely focused on discrimination in daily life, accounted for 8%. 80% of reporters had smartphones, offering the potential to increase the use of this feature in future.
 

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

Study on explosive hazard victim reporting and data management processes in Iraq

NIJHOLT, Sarah
April 2019

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Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:

  • Understand what explosive hazard victim reporting and data management processes exist in Iraq;
  • Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
  • Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
  • Understand the successes, shortfalls, and challenges in data collection and information sharing;
  • Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
  • Identify if and how the data on victims is being collected and used by government authorities and the international fora.

 

Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.

Guidance on strengthening disability inclusion in Humanitarian Response Plans

PERRY, Stephen
LANGE, Kirstin
MITRA, Gopal
WOOD, Gavin
April 2019

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This guidance provides support to seven UN entities on how to strengthen inclusion of disability in Humanitarian Response Plans (HRPs) as part of the UK Department for International Development (DFID) Humanitarian Investment Program. The aim of this work is to make humanitarian programming more responsive to the needs of people with disabilities affected by crisis. Humanitarian Response Plans are the product of a strategic planning process that is informed by humanitarian needs assessment activities. Therefore, this guidance focuses primarily on the steps in the humanitarian program cycle (HPC) leading to the HRP, including the process of developing the Humanitarian Needs Overview (HNO). This guidance has been aligned to the 2019 revision of this process

Geneva Academy briefing on Disability and armed conflict 2019

PRIDDY, Alice
April 2019

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This publication brings attention to the devastating impact conflict has on persons with disabilities and, crucially, highlights that many of the key international humanitarian law (IHL) provisions that serve to minimize the impact of armed conflict – such as the proportionality assessment and advanced effective warnings – are not being applied in a disability inclusive manner, resulting in persons with disabilities being killed, seriously injured or left behind as families flee armed attacks.

 

Research methods included a combination of: desk research; structured interviews with persons with disabilities and their representative organizations, NGOs and humanitarian personnel; and field workshops through which feedback was sought on discrete issues. 

 

The project focused on the situation of persons with disabilities in five states experiencing different levels of armed conflict or its aftermath (the DRC, Colombia, Palestine, Ukraine and Vietnam). These states were selected because they are all States Parties to the CRPD, and they represent a diverse range of regions and cultures, differing types of conflicts (including the involvement of ANSAs), different stages of conflict or post-conflict situations, differing levels of economic development and varying levels of international assistance

“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.

Rapid needs assessment of older people Cyclone Idai, Malawi

HELPAGE INTERNATIONAL
MALAWI NETWORK OF OLDER PEOPLES ORGANISATIONS (MANEPO)
March 2019

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In early March 2019, heavy rains and floods affected the majority of the districts in southern Malawi. At least 115,000 were affected, with scores of fatalities, injured and missing persons. The situation intensified when Cyclone Idai reached Malawi, increasing the devastation caused by heavy rain weeks earlier. When Cyclone Idai caused the Shire river to reach capacity and flood, the districts of Chikwawa and Nsanje were among the worst affected. The aim of this rapid needs assessment was to inform the design of  HelpAge International’s own humanitarian response to the devastating impact of Cyclone Idai on older people in Malawi. The Malawi Network of Older Persons’ Organisations (MANEPO) and HelpAge International jointly conducted the assessment in Chikwawa and Nsanje districts in March 2019. The report also aims to support organisations operating in the affected areas to develop inclusive programmes and support advocacy for the rights of older people to be upheld in the response. The report contains key findings of the assessment, together with observations and analysis. 

Women and girls with disabilities. Needs of survivors of gender based violence and services offered to them

BURGHAL, Waseem
March 2019

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This study on GBV among women and girls with disabilities was conducted by UNFPA (United Nations Population Fund) with the support of Denmark in the context of the GBV Sub-Cluster Strategy 2018-2020. It was based on a needs analysis and mapping of services offered to women and girls with disabilities aged 15 and older who are survivors of gender-based violence (GBV) in the West Bank and Gaza Strip, particularly in view of the poor protection, care and social services available to women survivors of violence. Its objective was to map the available services; analyze major gaps and challenges related to service delivery; identify roles and responsibilities of stakeholders and service providers, including stakeholder coordination, legislation and policies, capacity, prevention and response services, the referral process and accountability; as well as to make recommendations and propose interventions to address the weaknesses in the protection system for women and girls with disabilities in Palestine.

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Global survey of inclusive early childhood development and early childhood intervention programs

VARGAS-BARON, Emily
et al
March 2019

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To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

 

The main objectives of the survey were to:

  • Map current implementation of IECD and ECI programs and related activities;
  • Describe key IECD and ECI program features;
  • Identify gaps and challenges in providing accessible IECD and ECI services;
  • Document factors associated with successful implementation and scale-up;
  • Generate recommendations to inform future policy and program development and national planning and implementation efforts.

 

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

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

Reimagining the workplace: disability and inclusive employment

LEONARD CHESHIRE
February 2019

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This UK based report examines the challenges and barriers facing disabled people throughout their working journey, as well as considering solutions to some of the key issues. Through our own research survey and interviews we look at the impact on disabled people where they cannot access adequate support as well as what works in improving their employment prospects

 

Topics discussed include: conditions of employment; preparing for work; falling out of work; and the performance of government based programmes.

 

ComRes interviewed in 2018 online 1,647 disabled adults in the UK, aged between 18 and 65, and in 2017 they interviewed 1,609 disabled adults. ComRes interviewed 503 UK line managers responsible for or involved in the recruitment process in 2018 and in 2017.  Between 1 December 2018 – 20 January 2019, Leonard Cheshire conducted in-depth telephone interviews with seven disabled people of working age about their experiences of employment. 

 

Recommendations are made throughout.

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

KIDD, Stephen
et al
February 2019

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This 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 project 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.

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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