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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.

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

“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.

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.

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

More at risk: how older people are excluded in humanitarian data

TANYANG, Gaynor
VENTURES, Lumina
2019

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This report evaluates existing policies and practices on how older people have been excluded from data in disaster preparedness and humanitarian responses in Bangladesh, India, Nepal, Pakistan, Sri Lanka, Cambodia, Indonesia, Myanmar, the Philippines, Thailand and Vietnam.

In order to evaluate existing policies and practices in the collection of inclusion data, the research employed two main methods: a review of documents and a survey. The review of documents was conducted in three stages: a global literature review, followed by a policy review and a practice review. The survey analysed the responses of 72 respondents from 10 countries .

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.

Provision of wheelchairs in Tajikistan: Economic assessment of alternative options

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication presents the results of a study on the economic aspects of various models for the provision of wheelchairs in Tajikistan. The study was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. The study was finalized in consultation with Tajik users of wheelchairs, the Ministry of Health and Social Protection and international experts on wheelchair production and provision, and made use of national and international evidence on the provision of wheelchairs to inform the analysis and develop evidence-based policy options. While the study focuses on the Tajik context and its aspirations to expand in-country production of wheelchairs, its approach and findings will also be of interest to other countries in a similar situation and to other interested stakeholders"

 

 

Assistive technology in Tajikistan: Situational analysis

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication summarizes the current gaps, needs and opportunities for intervention in the field of assistive technology in Tajikistan. The situational analysis was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. It was undertaken in collaboration with different Government ministries and State agencies, development partners, United Nations agencies, nongovernmental organizations, disabled people’s organizations and users of assistive products. It adopted a realist synthesis approach, responsive to the unique social, cultural, economic and political circumstances in the country. The evaluation focuses on assistive technology policy and governance, service provision and the impact of assistive technology on the health and well-being of individual users and their families, with the aim of improving access to high-quality, affordable assistive products in Tajikistan.

 

200 persons with disabilities participated in a survey designed to collect information on self-reported need for assistive products, user experiences and barriers to access. An additional 11 focus groups made up of persons with disabilities and older adults held indepth discussions on assistive technology. The major providers of assistive technology (Government facilities, nongovernmental organizations, local producers) were also interviewed as part of the research"

Seeing the invisible: Sexuality-related knowledge, attitudes and behavior of children and youth with disabilities in China

SHANGHAI INSITITUTE OF PLANNED PARENTHOOD RESEARCH (SIPPR)
UNESCO
HUMANITY & INCLUSION (HI)
2019

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Young people with disabilities have the same right to Sexual and Reproductive Health (SRH) as their peers without disabilities, but their needs and rights are often overlooked. This study examines the SRH status of young people with disabilities in China. In particular, the study explored the sexuality-related knowledge, attitudes and behaviour of young people with disabilities as well as their access to sexuality-related information, education and services. The findings of the study are intended to provide evidence to support decision-making by government agencies, educators, development workers and other relevant stakeholders regarding developing and implementing disability-inclusive SRH and sexuality education policies and programmes for young people in China.

The study, using quantitative and qualitative methods, was conducted in 2015 among unmarried young persons aged 12 to 24 living with visual, hearing, physical and intellectual disabilities, in both urban and rural areas. The analysis was based on data collected through 707 completed valid questionnaires, 20 group interviews and 35 individual interviews with young people with disabilities, and individual interviews with 60 parents and teachers, along with one case study.

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.

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