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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.

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/

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.

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.

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.

Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

Disability and HIV

UNAIDS
August 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care. Globally, it is estimated that 1 billion people (15% of the world’s population) have a disability. Of those aged over 15 years, approximately 110–190 million (2.2–3.8%) experience significant disabilities. Disability is increasing in prevalence due to ageing populations, trauma, accidents and the increase in chronic health conditions, including HIV. Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection.
 

Healthcare provider's attitude towards disability and experience of women with disabilities in the use of maternal healthcare service in rural Nepal

DEVKOTA, Hridaya Raj
KETT, Maria
GROCE, Nora
MURRAY, Emily
June 2017

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BACKGROUND:
Women with disabilities are less likely to receive maternal healthcare services compared to women without disabilities. While few studies have reviewed healthcare experience of women with disabilities, no studies have been conducted to understand provider's attitude towards disability in Nepal, yet the attitude and behaviour of healthcare providers may have a significant influence on aspects of care and the use of service by women with disabilities. This study examines healthcare provider's attitudes towards disability and explores the experience of women with disabilities in maternal healthcare service utilization during pregnancy and childbirth.

METHOD:
The study used mixed method approach. An attitude survey was conducted among 396 healthcare providers currently working in public health facilities in Rupandehi district of Nepal. For additional insight, eighteen in-depth interviews with women with disabilities who used maternal healthcare services in a healthcare facility within the study district in their last pregnancy were undertaken. The Attitude Towards Disabled Persons (ATDP) scale score was used to measure the attitudes of healthcare providers. For quantitative data, univariate and multivariate analysis using ANOVA was used to understand the association between outcome and independent variables and qualitative analysis generated and described themes.

Reproductive Health, 2017

Disability and HIV

UNAIDS
January 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care.

SDGs, Inclusive Health and the path to Universal Health Coverage

HASHEMI, Goli
KUPER, Hannah
WICKENDEN, Mary
2017

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The Sustainable Development Goals (SDGs) are a set of goals designed to improve the social, economic and well-being of all, while maintaining global and environmental sustainability. Health is one of the 17 goals, and focuses not only on addressing morbidity and mortality, but also on improving access to healthcare services for all through Universal Health Coverage (UHC). While disability is not specifically mentioned in this goal, a focus on people with disabilities is important given the inclusive nature of the SDGs and the fact that people with disabilities make up the largest minority group in the world. This paper aims to critically consider what the health goal could mean for people with disabilities and advocates for inclusive health. It discusses the complex relationship between disability and health, and why people with disabilities are more vulnerable to poor health are discussed, and then considers factors that impact access to quality healthcare for people with disabilities and how these impact on the achievement of the targets in SDG Health Goal and the main principles of UHC. The paper argues that developing an inclusive approach to healthcare will not only improve achieving good health for all, but is also important since experiencing poor health may reduce quality of life and participation (e.g. in education, employment or community activities). Poor quality of life and participation can exacerbate disability, poverty and exclusion in addition to increasing suffering, morbidity and early mortality. The paper concludes that an inclusive UHC will not only fulfil the fundamental rights of people with disabilities to health and rehabilitation, as emphasized within the UN Convention on the Rights of Persons with Disabilities, but also contribute to the achievement of the SDGs.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

Priority assistive products list

WORLD HEALTH ORGANISATION (WHO)
May 2016

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The Priority Assistive Products List (APL) aspires to follow in the footsteps of the WHO Model List of Essential Medicines, which creates awareness among the public, mobilises resources and stimulates competition. The Priority Assistive Products List is similarly intended to be a catalyst in promoting access to assistive technology. It is not a restrictive list but aims to provide each Member State with a model from which to develop a National priority assistive products list. 

The List includes hearing aids, wheelchairs, communication aids, spectacles, artificial limbs, pill organizers, memory aids and other essential items for many older people and people with disabilities to be able to live a healthy, productive and dignified life.

The APL is part of the Global Cooperation on Assistive Technology (GATE)

Disability Inclusion in Primary Health Care in Nepal: An Explorative Study of Perceived Barriers to Access Governmental Health Services

VAN HEES, S
CORNIELJE, H
WAGLE, P
VELDMAN, E
2015

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Purpose: Persons with disabilities face additional barriers in accessing primary healthcare services, especially in developing countries. Consequently the prevalence of secondary health conditions is higher among this population. This study aims to explore the perceived barriers to access primary healthcare services by persons with disabilities in the Western region of Nepal.

 

Methods: 10 primary healthcare providers and 11 persons with disabilities (physically or visually impaired) were selected by non-governmental organisations from the hilly and lower areas. Based on the International Classification of Functioning and the health accessibility model of Institute of Medicine, semi-structured interviews were conducted and analysed using analytical induction.

 

Results: In general, healthcare providers and persons with disabilities reported similar barriers. Transportation and the attitude of family members and the community were the main environmental barriers. Even with assistive devices, people still depend on their families. Financial barriers were lack of funds for health expenses, problems in generating an income by persons with disabilities themselves, and the low socio-economic status of their families. Personal barriers, which affect help-seeking behaviour in a major way, were most often mentioned in relation to financial and socio-environmental barriers. Low self-esteem of the person with disability determines the family’s attitude and the motivation to seek out healthcare. Lastly, poor public awareness about the needs of persons with disabilities was reported.

 

Conclusions: Besides the known physical environmental barriers, this study found several environmental, financial and personal barriers that also affect access to primary healthcare. In particular, the attitudes of families and poor financial conditions seem to be interrelated and greatly influence help-seeking behaviour.

A home-based rehabilitation intervention for people living with HIV and disability in a resource-poor community, KwaZulu-Natal : study protocol for a randomized controlled trial

COBBING, Saul
HANASS-HANCOCK, Jill
MYEZWA, Hellen
2015

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In this paper, the researchers develop a needs-based home-based rehabilitation programme for people living with HIV in order to improve their quality of life and functional ability. The study aims to  provide rehabilitation professionals and researchers with evidence that can be utilised to improve existing rehabilitation interventions for people living with HIV.

The paper outlines a randomised control trial to test the programme, to be conducted at a public hospital in KwaZulu-Natal, South Africa. The trial will assess the participants’ quality of life, perceived level of disability, functional ability and endurance

Trials 16:491

World report on ageing and health

WORLD HEALTH ORGANIZATION (WHO)
2015

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This report lays out framework for the development of new strategies to bring the right programmes, information, and services to an ageing international community. The report focuses on policy development, healthy ageing and health in old age, health systems and long – term care systems.  The report concludes by presenting a series of recommended next steps to realising the vision of a world that is more friendly to an ageing population

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Strengthening participation of children and young people with disability in advocacy

SIMMONS, Dr. Catharine
ROBINSON, Dr. Sally
October 2014

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Participation by children and young people in advocacy and change-making can not only improve and foster positive change in their own lives, but also influence the lives of others. When young people’s participation is supported, meaningful and engaged, multiple benefits accrue; their perspectives and experiences bring a unique contribution and can result in rights-based empowerment, enacted citizenship and improved relationships. This has the potential to shape policy, to increase the relevance and responsiveness of organisations they use, and to influence change in their communities in positive ways

 

However, there are significant issues and a range of barriers that discourage, prevent or actively exclude children and young people with disability from participating. A culture of low expectations, social and cultural barriers, relationship and identity difficulties and practical hurdles exist for many young people. As a result, many are precluded from participation, particularly around change-making activities

 

This paper examines how meaningful participation of children and young people with disability in advocacy and change-making can be strengthened. In the paper CDA calls for the promotion of children and young people’s participation as active and valued community members

Disability action plan

WORLD HEALTH ORGANIZATION (WHO)
April 2014

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The Action Plan is based on the recommendations of the WHO and World Bank World report on disability and in line with the Convention on the Rights of Persons with Disabilities. It was developed in consultation with Member States, United Nations organizations and national and international partners including organizations of people with disabilities.

The Action Plan has three objectives : to remove barriers and improve access to health services and programmes; to strengthen and extend rehabilitation, habilitation, assistive technology, assistance and support services, and community-based rehabilitation; to strengthen collection of relevant and internationally comparable data on disability and support research on disability and related services

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