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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

Caregivers' views on stigmatisation and discrimination of people affected by leprosy in Ghana

ASAMPONG, Emmanuel
DAKO-GYEKE, Mavis
ODURO, Razak
January 2018

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In Ghana, the social interpretation of leprosy regardless of the language, culture and tradition engenders stigmatisation and discrimination that leads to social rejection and exclusion of persons who have been cured of the disease. Often, these persons are cared for by relatives who happen to live with them in a confined place. From the views of these caregivers, this paper identifies areas of stigmatising and discriminatory tendencies against people affected by leprosy who reside in a Leprosarium in Accra. A qualitative interview with semi-structured interviews were conducted for twenty caregivers.

African Journal of Disability Vol 7 (2018)

2018

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This journal provides

  • Nineteen original research articles on a variety of topics including the cost of raising a child with autism, experiences of care givers to stroke survivors, dyslexic's learning experiences, communication rehabilitation, disability and food security, hearing children of deaf parents and rehabilitation of stroke survivors, disability policy, learning for deaf learners, aquatic based interventions for children with cerebral palsy, evaluation of community based rehabilitation programmes, the impact of stroke and barriers to the implementation of inclusive education.
  • Seven review articles: Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?; The benefits of hydrotherapy to patients with spinal cord injuries; Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities; The relationship between social support and participation in stroke: A systematic review; Parents of children with disabilities: A systematic review of parenting interventions and self-efficacy; Implementation of the 2006 Convention on the Rights of Persons with Disabilities in Zimbabwe: A review; Part 1: A review of using photovoice as a disability research method: Implications for eliciting the experiences of persons with disabilities on the Community Based Rehabilitation programme in Namibia
  • There is an opinion paper entitled - Deafening silence on a vital issue: The World Health Organization has ignored the sexuality of persons with disabilities
  •  There is a case study - Lessons from the pilot of a mobile application to map assistive technology suppliers in Africa

Fully accessible guide to flying with disabilities

2018

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A table is provided of the top 15 US airports giving notes on restrooms, pet relief areas, parking for people with disabilities and wheelchair services. Advantages of the use of specific credits cards by disabled people when travelling by plane in the USA are highlighted.

Studying in UK as a disabled student

2018

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A brief introduction is provided about being a person with disabilities and a student in the UK. Information is given on rights, University’s office for disabled students, adjustments and scholarships and loans.

GEM report summary on disabilities and education

UNESCO
2018

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In support of the run-up to the 2020 GEM Report on inclusion and education, this paper contains summarised content related to disabilities and education in previous Global Education Monitoring (GEM) Reports since 2010. Reports cited from 2010 and 2015 monitored countries in the Global South. The GEM Report started monitoring countries in the Global North from the 2016 Report onwards only.

 

Topics covered include: compliance monitoring; the role of civil society organisations; lack of data; marginalisation; data on primary school attendance; intersection with other disadvantages; different education related challenges; and ten education policies to counteract marginalisation.

Disability-inclusive social protection research in Nepal: A national overview with a case study from Tanahun district

BANKS, Lena M
et al
2018

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Social protection programmes are increasingly being adopted in low- and middle-income countries as a set of strategies for poverty reduction, improving livelihoods and decreasing inequality. Due to high levels of poverty and social exclusion, people with disabilities – who comprise upwards of 15% of the global population – have been identified as a key target group for inclusion in social protection, in both international guidelines and in national strategies. However, there is currently a lack of evidence on whether these programmes are adequately reaching and meeting the needs of people with disabilities.

The aim of this research was to assess the extent to which social protection systems in Nepal and Vietnam address the needs of people with disabilities. This research uses a mixed methods approach, combining a national policy analysis with district-level qualitative and quantitative studies in each country

Disabling bodies of/and land: Reframing disability justice in conversation with indigenous theory and activism

JAFFEE, Laura
JOHN, Kelsey
2018

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A central claim of this paper is that the destruction of Earth through practices of settler colonialism is inextricable from the disablement of Indigenous ontology, peoples, and communities. The disablement of land/body as a tactic of settler colonialism has persisted for centuries and takes multifarious forms. By highlighting Indigenous struggles to protect Mother Earth and her sacred resources, we suggest that Indigenous ontology, specifically relationships to land (Deloria, 1972), challenges Eurocentric/settler disability theory at the epistemological level by rejecting the taken-for-granted dualism between the environment and (disabled) humans within (settler) disability studies. Indigenous ontology, and Indigenous peoples’ experiences of settler colonialism, belie a clear bifurcation of humans and the environment, or bodies and space. Land appropriation, resource extraction, linguistic genocide, forced removal, erasure, and devastation by settlers invariably wreaks havoc on the land, spirit, livestock, and bodies of Indigenous peoples. Rejecting logics of elimination and imagining alternative futures- in opposition to the capitalist state’s projection of futures devoid of disability and Indigeneity- is essential for realizing national and bodily self-determination for non-Indigenous disabled and Indigenous peoples in the present and into the future.

 

Disability and the Global South, 2018, Vol.5, No. 2

Poverty and disability in low- and middle-income countries: A systematic review

BANKS, Lena Morgon
KUPER, Hannah
POLACK, Sarah
December 2017

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Disability and poverty are believed to operate in a cycle, with each reinforcing the other. While agreement on the existence of a link is strong, robust empirical evidence substantiating and describing this potential association is lacking. Consequently, a systematic review was undertaken to explore the relationship between disability and economic poverty, with a focus on the situation in low and middle income countries (LMICs).

Ten electronic databases were searched to retrieve studies of any epidemiological design, published between 1990-March 2016 with data comparing the level of poverty between people with and without disabilities in LMICs (World Bank classifications). Poverty was defined using economic measures (e.g. assets, income), while disability included both broad assessments (e.g. self-reported functional or activity limitations) and specific impairments/disorders. Data extracted included: measures of association between disability and poverty, population characteristics and study characteristics. Proportions of studies finding positive, negative, null or mixed associations between poverty and disability were then disaggregated by population and study characteristics.

 

https://doi.org/10.1371/journal.pone.0204881

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 inclusion and the sustainable development goals : practices and challenges

AL-GHAIB, Ola Abu
WILM, Susanne
October 2017

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This research was commissioned on the occasion of the 2017 High-level Political Forum (HLPF) in New York to investigate how far the global commitment to disability has translated into implementation, monitoring and reporting processes at national and sub-national level. Four case studies were commissioned, exploring the extent of disability inclusion in alignment with the SDGs in Bangladesh, Kenya, Sierra Leone and Zambia. DPOs played a pivotal role in the research, with more than 40 DPOs consulted through key informant interviews and focus group discussions. In Zambia, the research was implemented by a local DPO – the Zambia Federation of Disability Organisations (ZAFOD). A literature review identified internet-based policy, legal and strategic documents related to disability and the 2030 Agenda, as well as documentation and reports on different SDG nationalisation initiatives.

 

 

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

Resource book on Disability Inclusion

LIGHT FOR THE WORLD
2017

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This is a resource book on disability inclusive practices. Within this book a variety of resources has been brought together that are relevant for disability inclusion. This is of particular interest for persons working in (development) organisations who would like to ensure that their projects and programmes are inclusive of persons with disabilities.

This book consists of four parts:

Core concepts
How To Pages
Resource Listing
Trainer-facilitator’s Guide

The book relies heavily on the experiences and practices of inclusion developed by different organisations to which the authors are indebted, and they have tried to make reference to the sources wherever possible. In addition, they have drawn on their experiences as programme managers and disability inclusion advisors.

These materials may be used for non-commercial purposes, with proper references to all authors and sources involved. Should you use this resource book in your training or other work, please let us know via lab@light-for-the-world.org.

Including children with disabilities in humanitarian action

UNICEF
July 2017

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"The purpose of Including Children with Disabilities in Humanitarian Action is to strengthen the inclusion of children and women with disabilities, and their families, in emergency preparedness, response and early recovery, and recovery and reconstruction. This series of booklets provides insight into the situation of children with disabilities in humanitarian contexts, highlights the ways in which they are excluded from humanitarian action, and offers practical actions and tips to better include children and adolescents with disabilities in all stages of humanitarian action. The booklets were created in response to UNICEF colleagues in the field expressing a need for a practical resource to guide their work. The information and recommendations are based on evidence and good practices gathered from literature and field staff experiences. The six booklets on how to include children and adolescents with disabilities in humanitarian programmes are as follows: 1) general guidance; 2) child protection; 3) education; 4) health and HIV/AIDS; 5) nutrition; 6) water, sanitation and hygiene (WASH)".

General guidance available July 2017. Others to follow.

In addition to the PDF versions in English, Arabic and French, the guidance is also available in a range of accessible formats, including EPUB, a Braille-ready file and accessible HTML formats. 

The guidance was developed in collaboration with Handicap International.

‘These are not luxuries, it is essential for access to life’: Disability related out-of-pocket costs as a driver of economic vulnerability in South Africa

HANASS-HANCOCK, Jill
NENE, Siphumelele
DEGHAYE, Nicola
PILLAY, Simmi
2017

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Background: With the dawn of the new sustainable development goals, we face not only a world that has seen great successes in alleviating poverty but also a world that has left some groups, such as persons with disabilities, behind. Middle-income countries (MICs) are home to a growing number of persons with disabilities. As these countries strive to achieve the new goals, we have ample opportunity to include persons with disabilities in the emerging poverty alleviation strategies. However, a lack of data and research on the linkages between economic vulnerability and disability in MICs hampers our understanding of the factors increasing economic vulnerability in people with disabilities.


Methods: This article aims to present data related to elements of this vulnerability in one MIC, South Africa. Focusing on out-of-pocket costs, it uses focus group discussions with 73 persons with disabilities and conventional content analysis to describe these costs.


Results: A complex and nuanced picture of disability-driven costs evolved on three different areas: care and support for survival and safety, accessibility of services and participation in community. Costs varied depending on care and support needs, accessibility (physical and financial), availability, and knowledge of services and assistive devices.


Conclusions: The development of poverty alleviation and social protection mechanisms in MICs like South Africa needs to better consider diverse disability-related care and support needs not only to improve access to services such as education and health (National Health Insurance schemes, accessible clinics) but also to increase the effect of disability-specific benefits and employment equity policies.

Guatemala National Disability Study ENDIS 2016 Report

DONICIO Carlos
GRECH Shaun
Islay MACTAGGART
Jonathan NABER
Dr Ana Rafaela SALAZAR DE BARRIOS
Gonna ROTA,
Sarah POLLACK
April 2017

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The Guatemala National Disability Study (ENDIS 2016) was undertaken to address a need for up to date reliable data on disability in Guatemala.

Through a population based survey:

* To estimate the national disability prevalence among adults and children in Guatemala, and to provide regional estimates for 5 broad regions

* To disaggregate the prevalence of disability in Guatemala by age, sex, type of functional limitation and socio-economic status

* To explore the impact of disability on: poverty, quality of life, participation, health and opportunities to go to school and to work amongst children and adults respectively

Through a qualitative study:

* To explore cultural, ideological, and social interpretations and responses to disability; provide insight into the disability and poverty relationship; and examine social, political, and economic dimensions operating within this relationship.

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

The economic burden of dementia in China, 1990–2030: implications for health policy

WORLD HEALTH ORGANIZATION
January 2017

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Objective To quantify and predict the economic burden of dementia in China for the periods 1990–2010 and 2020–2030, respectively, and discuss the potential implications for national public health policy. Methods Using a societal, prevalence-based, gross cost-of-illness approach and data from multiple sources, we estimated or predicted total annual economic costs of dementia in China. We included direct medical costs in outpatient and inpatient settings, direct non-medical costs – e.g. the costs of transportation – and indirect costs due to loss of productivity. We excluded comorbidity-related costs.

Findings The estimated total annual costs of dementia in China increased from 0.9 billion United States dollars (US$) in 1990 to US$47.2 billion in 2010 and were predicted to reach US$ 69.0 billion in 2020 and US$ 114.2 billion in 2030. The costs of informal care accounted for 94.4%, 92.9% and 81.3% of the total estimated costs in 1990, 2000 and 2010, respectively. In China, population ageing and the increasing prevalence of dementia were the main drivers for the increasing predicted costs of dementia between 2010 and 2020, and population ageing was the major factor contributing to the growth of dementia costs between 2020 and 2030.

Conclusion In China, demographic and epidemiological transitions have driven the growth observed in the economic costs of dementia since the 1990s. If the future costs of dementia are to be reduced, China needs a nationwide dementia action plan to develop an integrated health and social care system and to promote primary and secondary prevention.

Inclusive teaching and learning in higher education as a route to excellence

DISABLED STUDENTS SECTOR LEADERSHIP GROUP
LAYER, Geoff
January 2017

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The report encourages UK higher education providers (HEPs) to look at how they can support and offer the best environment for disabled students. It considers the requirement to provide ‘reasonable adjustments’ under the UK Equality Act 2010, and suggests actions to mitigate risks associated with that. It has been produced by the Disabled Student Sector Leadership Group, a sector-led group. 

DFE-00044-2017

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