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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.

Disability and Climate Resilience: A Literature Review

SMITH, Fred
SIMARD, Mathieu
TWIGG, John
KETT, Maria
COLE, Ellie
April 2017

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"This literature review covers a comprehensive body of literature targeting data from 2007 onwards in low and middle-income countries. It presents evidence from a literature review that retrieved and screened 1,011 articles and 546 grey literature sources. A total of 107 relevant sources were selected from the published and grey literature in accordance with the study design, of which 53 were included in the final review. The paper explains the literature review methodology, discusses concepts and definitions of resilience and introduces key global frameworks relating to climate change, disaster risk reduction and development"

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

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Partnerships in mental healthcare service delivery in low-resource settings: developing an innovative network in rural Nepal

ACHARYA, Bibhav
MARU, Duncan
SCHWARZ, Ryan
et al
January 2017

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"Mental illnesses are the largest contributors to the global burden of non-communicable diseases. However, there is extremely limited access to high quality, culturally-sensitive, and contextually-appropriate mental healthcare services. This situation persists despite the availability of interventions with proven efficacy to improve patient outcomes. A partnerships network is necessary for successful program adaptation and implementation."

High-Level Political Forum 2017

INTERNATIONAL DISABILITY ALLIANCE (IDA)
2017

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The theme for HLPF 2017 (High-Level Political Forum on sustainable development), 10-19 July 2017, is "Eradicating poverty and promoting prosperity in a changing world". The set of goals to be reviewed in depth will be goals 1, 2, 3, 5, 9, 14 and 17.

Key documents for HLPF 2017

Policy Briefs: HLPF 2017  
Global Report on the participation of organisations of persons with disabilities (DPOs) in VNR Processes 
Accessible Information Communication Technology and Assistive Technologies and Persons with Disabilities 
HLPF 2017: Submission Paper by the Stakeholder Group of Persons with Disabilitie

Issue brief: Making the SDGs count for women and girls with disabilities

UN WOMEN
2017

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The 2030 Agenda for Sustainable Development provides global opportunity and obligation to work towards achieving the Sustainable Development Goals (SDGs) for all women and girls, and address the rights and demands of women with disabilities as a matter of priority. This brief underlines the need to mainstream disability into all efforts to achieve gender equality and women’s empowerment (SDG 5); highlights key issues for ending poverty (SDG 1) and ensuring healthy lives (SDG 3) for women and girls with disabilities; and calls for closing data gaps on gender and disability.

The brief provides the following at a glance facts about women and girls with disabilities:

  • One in five women live with a disability globally
  • An estimated one in four households has a person with disabilities
  • Women are more likely than men to become disabled throughout the course of their lives
  • Women comprise up to three-quarters of persons with disabilities in low and middle-income countries
  • Prevalence of disability is higher among marginalised populations and people in rural areas.

Inclusive disaster risk reduction

LAFRENIERE, Annie
WALBAUM, Veronique
2017

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This policy paper defines the themes of inclusive disaster risk reduction and explains how these activities fit into the HI mandate. It also identifies the target population and defines modalities of intervention–standard expected outcomes, standard activities–as well as monitoring and evaluation indicators.

Pilot testing of 3D printing technology for transtibial prosthesis in complex contexts (Togo, Madagascar and Syria)

CONICAVE, Jerome
TAN, Daniele
2017

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In January-October 2016, Handicap International carried out a pilot testing of 3D printing technology for transtibial prosthesis in Togo, Madagascar and Syria. The aim of the study was to explore and test how physical rehabilitation services can be more accessible to people living in complex contexts via innovative technologies (such as 3D printing, treatment processes that use Internet technology and tools) and decentralised services by bringing them closer to the patients. This scientific summary provides the context, the objectives, the methodology, the results of the study, and perspectives for the future.

A number of technical appendices are available

RS/05

Global report on the participation of organisations of persons with disabilities (DPOs) in VNR (voluntary national review) processes

INTERNATIONAL DISABILITY ALLIANCE (IDA)
STAKEHOLDER GROUP OF PERSONS WITH DISABILITIES
2017

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"This global report raises awareness for DPOs and how to engage with their governments in the national consultation processes on SDG implementation. This case study features the volunteering countries of Argentina, Bangladesh, Denmark, El Salvador, Ethiopia, India, Indonesia, Italy, Kenya, Nigeria, Peru, Sweden and Togo.

The information summarised in the country chapters was derived from DPOs and partners working at the national level on SDG implementation and information may be subjective. The country chapters are structured to include; status of persons with disabilities, engagement in the voluntary national review process, thematic issues--poverty alleviation, healthcare, women with disabilities and accessibility—and analysis of the submitted VNR report

No One Left Behind: A review of social protection and disability at the World Bank

KARR, Valerie L
VAN EDEMA, Ashley
SIMS, Jacob
BRUSEGAARD, Callie
2017

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The 2030 Agenda for Sustainable Development cites poverty eradication as both the ‘greatest global challenge’ and an ‘indispensable requirement’ for sustainable development (UN, 2015). Unfortunately, the path between discourse and practice is rarely clear. This is especially true for the estimated one billion people with disabilities around the globe who face barriers and challenges to inclusion in mainstream development efforts; and for whom disability-specific projects and interventions are far and few between. This paper responds to the lack of available data focused on tracking the inclusion of persons with disabilities in mainstream poverty reduction efforts. It reports on work by a multidisciplinary research team in developing and piloting a methodology measuring disability inclusive investments in the World Bank’s active portfolio. The paper focuses specifically on the World Bank’s social protection portfolio, aligned with SDG 1 (End Poverty), and outlines a methodology for analysing project-level documentation, using key word searches, and codes aligned with the Sustainable Development Goals to determine the inclusion of persons with disabilities. Findings indicate that only a small percentage, 5%, of the World Bank’s active social protection portfolio explicitly include persons with disabilities as target beneficiaries. It goes on to argue that this dearth in disability inclusive development efforts exposes a vital need to systematically include the needs of this population in the planning for, provision of, and assessment of development assistance efforts. The paper concludes with a set of recommendations for ensuring future projects are inclusive from program development and implementation through to assessment of outcomes.

 

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

The wellbeing of children with developmental delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam: An analysis of data from UNICEF’s Multiple Indicator Cluster Surveys

EMERSON, Eric
SAVAGE, Amber
LLEWELLYN, Gwynnyth
December 2016

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This report, produced by the University of Sydney’s Centre for Disability Research and Policy (CDRP),
uses data collected in rounds four and five of UNICEF’s Multiple Indicator Cluster Surveys programme (MICS) to describe the wellbeing of young children with and without developmental delay in six Asian countries. The United Nations Sustainable Development Goals (SDG) were used as a framework for identifying indicators of child wellbeing.

The report, authored by CDRP Disability and Inequity Stream Leader Professor Eric Emerson with Dr Amber Savage of the Family and Disability Studies Initiative, University of Alberta, Canada and CDRP Director Professor Gwynnyth Llewellyn, found that children with Developmental Delay in Bangladesh, Bhutan, Laos, Nepal, Pakistan and Vietnam are more likely than their peers to:
• Be living in poverty (SDG1). In five out the six countries children with developmental delay were more likely to be living in poverty than their peers
• Experience hunger (SDG2). In all six countries children with developmental delay were more likely to have experienced persistent severe hunger than their peers
• Suffer poor health (SDG3). On three indicators (poor peer relationships, diarrhoea and fever) children with developmental delay were more likely to have poor health than their peers. On three indicators (obesity, aggression and acute respiratory infections) there was no systematic difference between children with and without developmental delay.
• Experience barriers to quality education (SDG4). On all four indicators (attendance at early childhood education centre, family support for learning, access to learning materials in the home, maternal level of education) children with developmental delay were more disadvantaged than their peers.
• Experience barriers to clean water and sanitation (SDG6). On two indicators (improved sanitation, place to wash hands) children with developmental delay were more disadvantaged than their peers. On one indicator (improved drinking water) there was no systematic difference between children with and without developmental delay.

The authors noted that “Since the development of the United Nations Convention on the Rights of the Child (UNCRC) in 1998, increased attention has been paid to monitoring the well-being of children. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) and UNCRC both contain explicit provisions regarding the rights of children with disabilities. These impose obligations on governments to act to ensure that children with disabilities enjoy the same rights and opportunities as other children. In order to promote the visibility of children with disabilities, enable better policy, and monitor progress, disaggregation of data related to children’s well-being on the basis of disability is needed."

Birth prevalence of Congenital Talipes Equinovarus in Low and Middle Income Countries: A Systematic Review and Meta-analysis

Tropical medicine and International Health
December 2016

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"Congenital talipes equinovarus (CTEV), or clubfoot, is a structural malformation that develops early in gestation. Birth prevalence of clubfoot is reported to vary both between and within low- and middle-income countries (LMICs), and this information is needed to plan treatment services. This systematic review aimed to understand the birth prevalence of clubfoot in LMIC settings." 

Society at a Glance 2016 : OECD Social Indicators

OECD
November 2016

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Society at a Glance 2016 aims to address the growing demand for quantitative evidence on the social situation, its trends, and its possible drivers across OECD countries. One objective is to assess and compare social outcomes that are currently the focus of policy debates. Another is to provide an overview of societal responses, and how effective policy actions have been in furthering social development. This edition of Society at a Glance discusses policy actions in response to the situation of youth Neither in Employment, Education, nor Training (NEET). Indicators on youth are therefore a particular focus

DOI: http://dx.doi.org/10.1787/9789264261488-en

End the cycle

CHRISTOFFEL BLINDENMISSION (CBM) AUSTRALIA
October 2016

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End the Cycle is a community awareness initiative promoting the human rights and empowerment of people with disabilities living in the world’s poorest countries. This website provides background information about the cycle of poverty and disability, highlights personal stories, and provides links to useful publications and related resources. Details are also provided about how to get involved with the initiative

World social science report, 2016 : Challenging inequalities; pathways to a just world

INTERNATIONAL SOCIAL SCIENCE COUNCIL
UNIVERSITY OF SUSSEX
INSTITUTE OF DEVELOPMENT STUDIES
September 2016

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This report focuses on the critical issues of inequalities and social justice and warns that unchecked inequalities could jeopardize the sustainability of economies, societies and communities, undermining efforts to achieve the Sustainable Development Goals (SDGs) by 2030. It highlights significant gaps in social science data about inequalities in different parts of the world and, to support progress towards more inclusive societies, calls for more robust research into the links between economic inequalities and disparities in areas such as gender, education and health. A short case study entitled "Consequences of inequality for persons with disabilities – experience of ADD International" is included.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

An adult learning perspective on disability and microfinance: The case of Katureebe

NUWAGABA, Ephraim L
RULE, Peter N
2016

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Background: Despite Uganda’s progress in promoting affirmative action for persons with disabilities and its strategy of using microfinance to fight poverty, access to microfinance services by persons with disabilities is still problematic due to barriers, characterised by discrepancies between policies and practices. Regarding education, the affirmative action in favour of learners with disabilities has not translated into actual learning opportunities due to personal and environmental barriers.


Objectives: The study on which this article is based investigated the non-formal and informal adult learning practices regarding microfinance that persons with disabilities engaged in. This article seeks to illuminate the barriers that a person with a visual impairment encountered while learning about and engaging with microfinance and the strategies that he developed to overcome them.


Methods: This was a case study, framed within the social model of disability and critical research paradigm. Data were collected through in-depth interviews of a person with visual impairment and observations of the environment in which adult learning and engagement with Savings and Credit Cooperative Organisations (SACCOs) occurred.


Results: Findings indicate that the person with a visual disability faced barriers to learning about microfinance services. He experienced barriers in an integrated manner and developed strategies to overcome these barriers. The barriers and strategies are theorised using the social model of disability.


Conclusion: The case of a person with visual impairment suggests that persons with disabilities face multiple barriers regarding microfinance, including social, psychological and educational. However, his own agency and attitudes were also of importance as they influenced his learning. Viewing these barriers as blockades can lead to non-participation in learning and engagement with microfinance whereas viewing them as surmountable hurdles can potentially motivate participants to succeed in learning about and engaging with microfinance.

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