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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.

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.

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.

Older people’s perceptions of health and wellbeing in rapidly ageing low- and middle-income countries

ALBONE, Rachel
2019

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This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.

This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.

 

 

 

Women and young persons with disabilities: Guidelines for providing rights-based and gender-responsive services to address gender-based violence and sexual and reproductive health and rights

HOLOBOFF RADFORD, Anastasia
et al
November 2018

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This publications aims to provide practical and concrete guidelines for making Gender-Based Violence (GBV) and Sexual and Reproductive Health and Rights (SRHR) services more inclusive of and accessible to women and young persons with disabilities and for targeting interventions to meet their disability-specific needs.
 
Critical services for all victims and survivors of GBV include health services (e.g. first-line support, sexual assault examination and care, mental health assessment and care), justice and policing services (e.g. assessment and investigation, perpetrator accountability and reparations, safety and protection, justice sector coordination), social services (e.g. crisis counselling; help lines; legal and rights information, advice, and representation; psychosocial support and counselling), and coordination at both the national and local level.

 

Fundamental SRHR services for women and young persons—with and without disabilities— include comprehensive sexuality education; information, goods, and services for the full range of modern contraceptive methods, including emergency contraception; maternal/newborn healthcare (including antenatal care, skilled attendance at delivery, emergency obstetric care, post-partum care, and newborn care); prevention, diagnosis, and treatment for sexual and reproductive health issues (e.g. sexually transmitted infections, including HIV, syphilis, and HPV, cancers of the reproductive system and breast cancer, and infertility); safe and accessible abortion, where it is not against the law; and post-abortion care to treat complications from unsafe abortion.

 

While the primary audience of these Guidelines is GBV and SRHR service providers and support staff, these Guidelines are also intended as a valuable resource for all stakeholders—including those in government, international organizations, and non-governmental organizations—involved in designing, developing, implementing, or advocating for GBV or SRHR services for women and young persons with disabilities. 

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

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Disability, CBR & Inclusive Development Vol 29, No 1 (2018): Spring 2018

2018

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Research papers in this journal issue are:

  1. Anticipated Barriers to Implementation of Community-Based Rehabilitation in Ribeirão Preto, Brazil
  2. Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia
  3. Utilisation and Satisfaction with Health Services among Persons with Disabilities in Accra, Ghana

 

Brief reports are:

  1. Predictors in the Selection of an AAC system: An Evidence-based Report on Overcoming Challenges
  2. Negotiating Future Uncertainty: Concerns of Mothers of Children with Down Syndrome in Kashmir, India
  3. Competencies of Students with Visual Impairment in using the White Cane in their Learning Environment: a Case Study at Wenchi Senior High in Ghana
  4. Teacher Trainees’ Perceptions of Inclusion of and its Challenges

Household expenditure on leprosy outpatient services in the Indian health system: A comparative study.

TIWARI, Ajun
et al
January 2018

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The primary objective of this study is to estimate the expenditure in primary (outpatient) care incurred by leprosy patients in two different health system settings in India. The secondary objective is to compare the effect of the health systems on consumer behaviour and practices. 

The study followed a cross-sectional design, where a cohort from the Union Territory of DNH (an administrative division ruled directly by the federal government) was compared with a cohort from Umbergaon block of Valsad district, Gujarat, India. A block is the smallest administrative unit under a district. The cohorts were leprosy cases detected between April 2015 and March, 2016. A sample of 120 participants from each group was selected randomly. In the financial year of 2015–16, DNH reported 425 and Umbergaon reported 287 cases. 

A household survey was conducted between June and October, 2016 by means of a structured questionnaire collecting data on patient demographics, HH socioeconomic status, accessibility of health services, treatment seeking history and OPD expenditure. Respondents were asked to report on the last three OPD visits, either in a public or private facility, in the last 6 months. 

The costs were categorized as direct and indirect expenditure. The direct part included the expenditure on consultation, investigations and medicines & supplies. The indirect part constituted expenditure on transport, food, and days lost during illness of the patient and attendant

PLOS Neglected Tropical Diseases, January 4, 2018

https://doi.org/10.1371/journal.pntd.0006181

Strengthening environmental sustainability and inclusion in health and other development programs. Practical guidance for environmental sustainability, accessibility, gender, safeguarding and disaster risk reduction

CBM
2018

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The purpose of this booklet is to promote discussion and innovation for strengthening environmental sustainability and inclusion in health and other development activities. The case studies and checklists are designed to foster creative thinking and the ongoing gathering of evidence related to these topics. The booklet will be useful to anyone seeking high quality outcomes from health and other development programs. The information was first compiled for CBM’s engagement in the General Assembly of the International Agency for the Prevention of Blindness 2016, however will be useful for advancing sustainable development with inclusion in any context.

The case sutdies are: Environmental Sustainability in Eye Health, Caritas Takeo Eye Hospital (CTEH), Cambodia; and  Strengthening Accessibility and Inclusion in Eye Health. UMC Kissy Eye Hospital, Freetown, Sierra Leone, West Africa

Global AgeWatch Insights. The right to health for older people, the right to be counted

ALBONE, Rachel
et al
2018

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This report considers the progress being made to achieve older people's right to health amid the global drive towards universal health coverage. It explores how older people are currently accessing health services and what changes need to be made to improve on this. It considers the role of data in driving and informing changes to health systems and the services they deliver. Data must be collected with and about older people to ensure adequate evidence for service design and delivery that is targeted and appropriate. This report explores the adequacy of current data systems and collection mechanisms and how, alongside health systems, they must be adapted in an ageing world. 

 

This report is supported by 12 country profiles (for Argentina, Colombia, El Salvador, Kenya, Lebanon, Moldova, Myanmar, Pakistan, Serbia, Tanzania, Vietnam and Zimbabwe; see Appendix 1). These provide national information on trends in the physical and mental health status of older people, and population-level information on access to UHC. The profiles are supplemented by data mapping, showing the national data available on older people’s health in the 12 profile countries, and revealing the data gaps. The data mapping results are available at www.GlobalAgeWatch.org.

Landmine Monitor 2017

INTERNATIONAL CAMPAIGN TO BAN LANDMINES – CLUSTER MUNITION COALITION (ICBL-CMC)
December 2017

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Landmine Monitor 2017 provides a global overview of the landmine situation. Chapters on developments in specific countries and other areas are available in online Country Profiles on the website.

Landmine Monitor covers mine ban policy, use, production, trade, and stockpiling in every country in the world, and also includes information on contamination, clearance, casualties, victim assistance, and support for mine action. The report focuses on calendar year 2016, with information included up to November 2017 when possible.

The Victim Assistance section covers: assessing the needs; frameworks for assistance; enhancing plans and policies; inclusion and active participation of mine victims; availability of and accessibility to services (medical care, rehabilitation including prosthetics; socioeconomic inclusion; education, pyschosocial support); guaranteeing rights in an age- and gender-sensitive manner; communicating objectives and reporting improvements; legal frameworks and new laws.

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Ensuring universal access to eye health in urban slums in the Global South: the case of Bhopal (India).

PREGEL, Andrea
et al
October 2017

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In the context of its Urban Eye Health Programme in Bhopal (India), Sightsavers launched a pilot approach aimed at developing an Inclusive Eye Health (IEH) model and IEH Minimum Standards.

Accessibility audits were conducted in a tertiary eye hospital and four primary vision centres located within urban slums, addressing the accessibility of physical infrastructures, communication and service provision. The collection and analysis of disaggregated data inform the inclusion strategy and provide a baseline to measure the impact of service provision. Trainings of eye health staff and sensitisation of decision makers on accessibility, universal design, disability and gender inclusion are organised on a regular basis.

A referral network is being built to ensure participation of women, people with disabilities and other marginalised groups, explore barriers at demand level, and guarantee wider access to eye care in the community. Finally, advocacy interventions will be developed to raise awareness in the community and mainstream disability and gender inclusion within the public health sector.

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.
 

Impact of cross-border healthcare on persons with disabilities and chronic conditions

INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS
February 2017

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"The International Federation for Spina Bifida and Hydrocephalus (IF) together with the European Disability Forum (EDF) and the European Patients Forum (EPF) conducted a survey among their networks to assess the impact of the Directive 2011/24/EU on the application of patients’ rights in cross border healthcare (crossborder healthcare Directive) on persons with disabilities and chronic conditions in the EU. The findings of the survey showed low awareness and low use of the Directive. A vast majority of 85% has never used crossborder healthcare even though 69% of respondents might have used it had they received information about it. Approximately three quarters (77%) of respondents have never heard about the Directive" 

Strengthening mental health system governance in six low- and middle-income countries in Africa and South Asia: challenges, needs and potential strategies

PETERSEN, Inge
et al
February 2017

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The aim of this study was to identify key governance issues that need to be addressed to facilitate the integration of mental health services into general health care in the six participating "Emerald" countries (Ethiopia, India, Nepal, Nigeria, South Africa, and Uganda).  The study adopted a descriptive qualitative approach, using framework analysis. Purposive sampling was used to recruit a range of key informants, to ensure views were elicited on all the governance issues within the expanded framework. Key informants across the six countries included policy makers at the national level in the Department/Ministry of Health; provincial coordinators and planners in primary health care and mental health; and district-level managers of primary and mental health care services. A total of 141 key informants were interviewed across the six countries. Data were transcribed (and where necessary, translated into English) and analysed thematically using framework analysis, first at the country level, then synthesised at a cross-country level.

Greece: Refugees with Disabilities Overlooked, Underserved

HUMAN RIGHTS WATCH
January 2017

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Refugees, asylum seekers, and other migrants with disabilities are not properly identified and do not enjoy equal access to services in reception centres in Greece.  On the basis of research carried out in mainland Greece and on the Greek islands in October 2016 and January 2017, and follow-up phone interviews in December 2016 and January 2017, Human Rights Watch found that asylum seekers and refugees with disabilities are not properly identified in Greece, in part because of a rushed registration process and the need for better guidance for staff. Without an adequate understanding of the scale and needs, aid agencies cannot respond effectively. Problems with equal access to water and sanitation services, food distribution, shelter, and health care including mental health and psychosocial support are reported.

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