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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.

Rehabilitation in health systems: guide for action

WORLD HEALTH ORGANISATION (WHO)
May 2019

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There is great variation across countries regarding the rehabilitation needs of the population, characteristics of the health system and the challenges that face rehabilitation. For this reason, it is important for each country to identify their own priorities and develop a rehabilitation strategic plan. A rehabilitation strategic plan should seek to increase the accessibility, quality and outcomes of rehabilitation.

To assist countries to develop a comprehensive, coherent and beneficial strategic plan, WHO has developed Rehabilitation in health systems: guide for action. This resource leads governments through a four-phase process of (1) situation assessment; (2) strategic planning; (3) development of monitoring, evaluation and review processes; and (4) implementation of the strategic plan. This process utilizes health system strengthening practices with a focus on rehabilitation.

The Rehabilitation in health systems: guide for action provides practical help that directs governments through the four phases and twelve steps. The process can take place at national or subnational level. Typically phases 1 to 3 occur over a 12-month period, while phase 4 occurs over the period of the strategic plan, around 5 years. The four phases and accompanying guidance are outlined below

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

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

SKEMPES, Dimitrios
et al
October 2018

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The process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities is described.  A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.

 

Globalization and Health (2018) 14:96
https://doi.org/10.1186/s12992-018-0410-5

Challenges and priorities for global mental health in the Sustainable Development Goals (SDG) era

ACADEMY OF MEDICAL SCIENCES
June 2018

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Published in 2011, the Grand Challenges in Global Mental Health initiative provided a framework to guide the research needed to improve treatment and prevention of mental health disorders and expand access to mental health services. At the Academy’s workshop on global mental health participants reflected on progress since 2011, focusing on specific life-course stages, and identified priorities for research in treatment and prevention, as well as enduring challenges and emerging opportunities

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.

Building the capacity of policy-makers and planners to strengthen mental health systems in low- and middle-income countries: a systematic review

Roxanne Keynejad
Maya Semrau
Mark Toynbee
Sara Evans-Lacko
Crick Lund, Oye Gureje
Sheila Ndyanabangi
Emilie Courtin
Jibril O. Abdulmalik
Atalay Ale
Abebaw Fekadu
Graham Thornicroft
Charlotte Hanlo
October 2016

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Background

Little is known about the interventions required to build the capacity of mental health policy-makers and planners in low- and middle-income countries (LMICs). We conducted a systematic review with the primary aim of identifying and synthesizing the evidence base for building the capacity of policy-makers and planners to strengthen mental health systems in LMICs.

Methods

We searched MEDLINE, Embase, PsycINFO, Web of Knowledge, Web of Science, Scopus, CINAHL, LILACS, ScieELO, Google Scholar and Cochrane databases for studies reporting evidence, experience or evaluation of capacity-building of policy-makers, service planners or managers in mental health system strengthening in LMICs. Reports in English, Spanish, Portuguese, French or German were included. Additional papers were identified by hand-searching references and contacting experts and key informants. Database searches yielded 2922 abstracts and 28 additional papers were identified. Following screening, 409 full papers were reviewed, of which 14 fulfilled inclusion criteria for the review. Data were extracted from all included papers and synthesized into a narrative review.

Results

Only a small number of mental health system-related capacity-building interventions for policy-makers and planners in LMICs were described. Most models of capacity-building combined brief training with longer term mentorship, dialogue and/or the establishment of networks of support. However, rigorous research and evaluation methods were largely absent, with studies being of low quality, limiting the potential to separate mental health system strengthening outcomes from the effects of associated contextual factors.

Conclusions

This review demonstrates the need for partnership approaches to building the capacity of mental health policy-makers and planners in LMICs, assessed rigorously against pre-specified conceptual frameworks and hypotheses, utilising longitudinal evaluation and mixed quantitative and qualitative approaches.

Integration of childhood tuberculosis into maternal and child health, HIV and nutrition services: A case study from Uganda

VERKUIJL, Sabine
et al
September 2016

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"Country case studies were conducted in Uganda and Malawi to document and analyse experiences and perspectives on childhood TB integration into other programmes at country level and related health system requirements. The aim was to inform the broader thinking about integration of childhood TB services. The Uganda case study identified and described different approaches to integration and unpacked the integration process. The perspective on TB integration of different relevant health actors at national and district level are described. The case study used a health systems approach and focused on the community and primary levels of the health system, paying attention to factors related to children of different ages in a lifecycle approach. The methodology for the case study included document review, consultations with key health actors at national and district level, a facility visit and a participatory workshop at national level. An analytical framework approach was used to investigate the extent of integration of childhood TB interventions in multiple dimensions. An assessment tool for the case studies was developed, summarising the assessment questions by theme, combining a number of existing tools and frameworks on health care integration in general and childhood TB and iCCM benchmarks"

Health financing country diagnostic: a foundation for national strategy development

MCINTYRE, Diane
KUTZIN, Joseph
2016

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Health systems’ analysis is not an exact science in the sense that it is not a case of calculating an indicator and comparing that to a target that is set in stone. Instead, the analysis rests on describing elements of the existing system and critically assessing this on the basis of a clear understanding of health financing policy, the objectives associated with UHC, and relevant comparisons with and lessons from other countries. The paper attempts to provide guidance on how this can be done by highlighting the key issues that should be considered and some of the specific questions that should be addressed. It is not intended to provide a strict chapter-bychapter outline for a system assessment, but instead to foster and guide a systematic approach to the analysis of the health financing system. The health financing country diagnostic is written for Ministries of Health, advisors and others actors responsible for developing and implementing health financing policies, and provides step-by-step guidance on how to undertake a situation analysis of a country’s health financing system. Topics considered include: key contextual factors that influence health financing policy and attainment of policy goals; overview of health expenditure patterns; review of health financing arrangements; analysis UHC goals and intermediate objectives; and overall assessment - priorities for health financing reform.

UNICEF’S STRATEGY FOR HEALTH (2016-2030)

UNICEF
December 2015

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UNICEF envisions a world where no child dies from a preventable cause, and all children reach their full potential in health and well-being. To this end, UNICEF’s 2016-2030 Strategy for Health aims to:

 

- End preventable maternal, newborn, and child deaths

- Promote the health and development of all children

 

With the first goal, UNICEF commits to maintaining focus on the critical unmet needs related to maternal, newborn and under-5 survival. With the second, UNICEF highlights the importance of also looking beyond survival and addressing the health and development needs of older children and adolescents.

 

The Strategy emphasises the importance of prioritising the needs of the most deprived children and promotes multi-sectoral approaches to enhance child development and address underlying causes and determinants of poor health outcomes. It aims to shift UNICEF from vertical disease programmes to strengthening health systems and building resilience, including calling for better integration of humanitarian and development efforts by encouraging risk-informed programming in all contexts.

Methods for the economic evaluation of health care programmes. 4th edition. Chapter 1 to 3)

DRUMMOND. Michael
et al
September 2015

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The analytical and policy challenges that face health systems in seeking to allocate resources efficiently and fairly are discussed. A critical appraisal framework is employed, which is useful both to researchers conducting studies and to decision-makers assessing them. Practical examples are provided throughout to aid learning and understanding. A key part of evidence-based decision making is the analysis of all the relevant evidence to make informed decisions and policy.

2015 global reference list of 100 core health indicators

WORLD HEALTH ORGANIZATION (WHO)
2015

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“The Global Reference List of 100 Core Health Indicators is a standard set of 100 indicators prioritized by the global community to provide concise information on the health situation and trends, including responses at national and global levels. It contains indicators of relevance to country, regional and global reporting across the spectrum of global health priorities relating to the post-2015 health goals of the Sustainable Development Goals (SDGs). These include the Millennium Development Goals (MDGs) agenda, new and emerging priorities such as noncommunicable diseases, universal health coverage and other issues in the post-2015 development agenda.”

Health-related rehabilitation and human rights : analyzing States' obligations under the United Nations convention on the rights of persons with disabilities

SKEMPES, Dimitrios
STUCKI, Gerold
BICKENBACH, Jerome
August 2014

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This article analyses States' obligations with respect to rehabilitation of health under the Convention on the Rights of Persons with Disabilities. Based on internationally accepted standards of human rights law interpretation and drawing extensively on current literature from the field of global health policy, the authors identify the range of governments legal obligations regarding health related rehabilitation across several key human right commitment areas, such as equality and nondiscrimination; progressive realization; international cooperation; participation in policymaking processes; the accessibility, availability, acceptability, and quality of rehabilitation services; privacy and confidentiality; and informed decision making and accountability.To support effective implementation of the Convention, governments need to focus their efforts on all these areas and devise appropriate measures to monitor compliance with human rights principles and standards in rehabilitation policy, service delivery, and organization. This study lays the foundations for a rights-based approach to rehabilitation offering a framework that may assist in the evaluation of national rehabilitation strategies, the development of appropriate indicators and the identification of gaps in the implementation of the Convention

Archives of Physical Medicine and Rehabilitation, Volume 96, Issue 1

Universal health coverage for inclusive and sustainable development. A synthesis of 11 country case studies.

MAEDA, Akiko
ARAUJO, Edson
CASHIN, Cheryl
HARRIS, Joseph
IKEGAMI, Naoki
REICH, Michael R.
et al
2014

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Universal health coverage (UHC) for inclusive and sustainable development synthesises the experiences from 11 countries—Bangladesh, Brazil, Ethiopia, France, Ghana, Indonesia, Japan, Peru, Thailand, Turkey, and Vietnam—in implementing policies and strategies to achieve and sustain UHC. These countries represent diverse geographic and economic conditions, but all have committed to UHC as a key national aspiration and are approaching it in different ways. The UHC policies for each country are examined around three common themes: (1) the political economy and policy process for adopting, achieving, and sustaining UHC; (2) health financing policies to enhance health coverage; and (3) human resources for health policies for achieving UHC. The path to UHC is specific to each country, but countries can benefit from experiences of others and avoid potential risks

Towards sustainability of the physical rehabilitation sector through sector development within broader health systems

URSEAU, Isabelle
BOGGS, Dorothy
November 2013

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This brief is a summary of Handicap International’s Sustainability of physical rehabilitation initiatives. To date these include a four year study, a participatory methodology, an international seminar and ongoing trainings, workshops and monitoring results, all of which exhibit our knowledge management cycle

PG Brief No 8

Quality management of global rehabilitation services

PRYOR, Wesley
BOGGS, Dorothy
September 2013

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This seminar report outlines the proceedings and discussions of Handicap International’s seminar “Quality Management of Global Rehabilitation Services: Global Experiences, Innovations and Shaping Future Reform”. The report closely follows the structure of the seminar week, highlighting key information, contributions, discussions and recommendations from the participants.

During the seminar week, the participants from over 12 countries shared positive and challenging rehabilitation responses and analysed the quality of services, focusing upon the management and development of the workforce. Based upon their lessons learned from rehabilitation experiences, the participants then developed short-term and long-term recommendations, to be shared widely with the aim of contributing to the enhancement of global quality rehabilitation

“Quality Management of Global Rehabilitation Services: Global Experiences, Innovations and Shaping Future Reform” Seminar

Ougadougou, Burkina Faso

11–15 June 2012

Social determinants of health : the role of social protection in addressing social inequalities in health

ROHREGGER, Barbara
August 2011

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This paper aims to provide focused insights into specific aspects of the international debate on social protection. The author highlights that "the social, economic and political context in which people grow, live, work and age has enormous impact on their health status. These wider structural determinants of health lie largely outside the health sector. The level and coverage of social protection systems is one key determinant. Social protection measures and mechanisms directly contribute to poverty reduction and human resource development by providing recipients with in-kind or cash transfers. They also allow beneficiaries to gain better access to social services, including health facilities, drugs, etc"
Discussion Papers on Social Protection, Issue No 11

Disability and health related rehabilitation in international disaster relief

REINHARDT, Jan
LI, Jianan
GOSNEY, James
et al
August 2011

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Natural disasters result in significant numbers of disabling impairments. Paradoxically, however, the traditional health system response to natural disasters largely neglects health-related rehabilitation as a strategic intervention. The objective was to examine the role of health-related rehabilitation in natural disaster relief along three lines of inquiry: (1) epidemiology of injury and disability, (2) impact on health and rehabilitation systems, and (3) the assessment and measurement of disability. A qualitative literature review and secondary data analysis were carried out. 

 

Global Health Action

http://dx.doi.org/10.3402/gha.v4i0.7191 

Ethnographic study of community-based child protection mechanisms and their linkage with the national child protection system of Sierra Leone

THE COLUMBIA GROUP FOR CHILDREN IN ADVERSITY
July 2011

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"Community-based child protection mechanisms (CBCPMs) are used widely by non-governmental organisations and communities to address and protect children from violence, exploitation, abuse, and neglect. The research in this study reviews the effectiveness and sustainability of CBCPMs and aims to strengthen the link between CBCPMs and the national child protection system"

Access to services for persons with disabilities in challenging environments : supplement to the seminar held in Amman (Jordan) in December 2009

DIXON, Catherine
BLANCHET, Karl
Eds
July 2010

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This is a collection of articles on research, policy initiatives and case studies on the theme of access to services based upon exchanges during a seminar on access to services in Amman in December 2009. It was written by Handicap International staff, field partners and international experts. There are three sections: key concepts and references on access to services; challenging environments; and innovation to improve access. This resource would be useful for practitioners and policy makers interested in access to services for people with disabilities.

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