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The Relationship Between Gross Motor Function and Quality of Life Among Children with Cerebral Palsy

PUSPITASARI, M
RUSMIL, K
GURNIDA, D
2014

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Purpose: The aim of this study was to determine the relationship between gross motor function and quality of life among children with Cerebral Palsy (CP).

 

Method: This observational analytical study with cross-sectional design, was conducted at Yayasan Pembinaan Anak Cacat (YPAC) Bandung, Sekolah Luar Biasa (SLB) Cileunyi, and Paediatric Neurology Clinic of Dr. Hasan Sadikin Hospital Bandung, Indonesia, from March 2011 to September 2012. Gross motor function was assessed using Gross Motor Function Scale (GMFCS). Cerebral Palsy-Quality of Life (CP-QOL) questionnaire for parent-proxy version was used to assess quality of life of children with CP. Statistical analysis was done using Spearman rank test to determine the relationship between variables.

 

Results: Participants were 31 children with CP, between 4 -12 years of age. The most common type of CP was spastic quadriplegia (17 of the 31 children). Around 17 children had mild disability (GMFCS level I and II), 3 children had moderate disability (GMFCS level III), and 16 children had severe disability (GMFCS level IV and V). Majority of the parents had senior high school level education. Most of the fathers were self-employed while most of the mothers were housewives. Gross motor function was not significantly correlated to quality of life in general in children with CP (rs=-0.153, p=0.205). Although gross motor function was significantly correlated to pain and the impact of disability (rs=-0.313, p=0.043), other aspects of quality of life (social well-being and acceptance, feeling about functioning, participation and physical health, emotional well-being and self-confidence, access to services, and family health) were not significantly correlated (p>0,05) to it.

 

Conclusions: Gross motor function in children with CP was correlated to pain and the impact of disability domain of quality of life.

Empowerment and participation : good practices from South & South-East Asia in disability inclusive disaster risk management

BOLTE, Patrick
MARR, Samadhi
SITOMPU, Dewi
et al
2014

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This report presents good practices showing examples of inclusion and active participation of persons with disabilities in disaster risk management. The paper is structured in three sections that illustrate general recommendations towards greater participation of persons with disabilities.

Section A provides the background on disability inclusive disaster risk management and reviews existing guidelines as to how the participation of people with disabilities in disaster risk management can be facilitated. 

Section B contains the actual good practices, structured in three separate chapters that illustrate general recommendations towards greater participation of persons with disabilities. Each practice highlights the involvement of individual persons as well as groups, describes the initial setting, the achievements, and the lessons learned from the practice. Each practice concludes with a box with key insights.

The final section C presents the key recommendations that can be drawn from the good practices and that are geared to inform future programming

Youth with disabilities in law and civil society: Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia

MEYERS, Stephen
KARR, Valerie
PINEDA, Victor
2014

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Youth with disabilities, as a subgroup of both persons with disabilities and of youth, are often left out of both legislation and advocacy networks. One step towards addressing the needs of youth with disabilities is to look at their inclusion in both the law and civil society in various national contexts. This article, which is descriptive in nature, presents research findings from an analysis of public policy and legislation and qualitative data drawn from interviews, focus group discussions, and site visits conducted on civil society organizations working in Phnom Penh, Cambodia and Jakarta, Indonesia. Data was collected during two separate research visits in the Spring and Summer of 2011 as a part of a larger study measuring youth empowerment. Key findings indicate that youth with disabilities are underrepresented in both mainstream youth and mainstream disability advocacy organizations and networks and are rarely mentioned in either youth or disability laws. This has left young women and men with disabilities in a particularly vulnerable place, often without the means of advancing their interests nor the specification of how new rights or public initiatives should address their transition to adulthood.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

Disability and the Global South (DGS), 2014, Vol. 1, No. 1

2014

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Articles include:

  • EDITORIAL :  Introducing Disability and the Global South (DGS): we are critical, we are open access!
  • Youth with Disabilities in Law and Civil Society:  Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia
  • Performing the Stare in Indra Sinha’s Animal’s People  
  • Disability Sport in Sub-Saharan Africa: From Economic Underdevelopment to Uneven Empowerment
  • Does Africa Dream of Androids?
  • Mendicidad y discapacidad en la Ciudad de Buenos Aires: un síntoma de nuevas formas de  vulnerabilidad social
  • Facilitating Disability Inclusion in Poverty Reduction Processes: Group Consensus Perspectives from Disability Stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone
  • Disability, poverty and Education: perceived barriers and (dis)connections in rural Guatemala 

Mainstreaming disability and ageing in water, sanitation and hygiene sector

JONES, Hazel
September 2013

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This report presents the findings of a desk study that provided an overview of the current state of disability and ageing issues in WASH, from the perspective of the WASH sector. Both disabled and older people were looked at together, because many frail older people, although they may reject the label ‘disabled’, experience impairments that limit their daily activities, which result in them facing similar kinds of barriers to accessing WASH

Disaster risk management for all : for the inclusion of children, elderly people and people with disabilities

FEDERAL MINISTRY FOR ECONOMIC COOPERATION AND DEVELOPMENT (BMZ)
World Food Programme
GIZ sector programmes
Eds
May 2013

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This publication explains the links between disasters, disaster risk management and particularly vulnerable sections of the population including children, elderly people and people with disabilities.  It gives an overview of the experience to date and provides some practical suggestions on how to meet the needs of all people on an equitable basis through disaster risk management.  Specific activities to strengthen inclusive disaster risk management are provided in this guide for all vulnerable groups

BMZ Information Brochure 1, 2013e

Accessible elections for persons with disabilities in five Southeast Asian countries

THE CENTER FOR ELECTION ACCESS OF CITIZENS WITH DISABILITIES (PPUA Penca)
GENERAL ELECTION NETWORK FOR DISABILITY ACCESS (AGENDA)
2013

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This report is the first systematic attempt to gather data on election access from Cambodia, Indonesia, Laos, the Philippines and Vietnam. The report reviews, for persons with disabilities, existing legal frameworks, challenges and barriers in exercising political rights and participation; best practices and innovations; and examples of how disabled persons organisations have been involved in electoral issues

Moving towards universal health coverage: health insurance reforms in nine developing countries in Africa and Asia

LAGOMARSION, G
GARABRANT, A
ADYAS, A
OTOO, N
MUGA, R
September 2012

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The implementation of national health insurance reforms designed to move towards universal health coverage by 9 low-income and lower-middle-income countries in Africa and Asia  is reported. Five countries at intermediate stages of reform (Ghana, Indonesia, the Philippines, Rwanda, and Vietnam) and four at earlier stages (India, Kenya, Mali, and Nigeria) are considered. These countries’ approaches to raising prepaid revenues, pooling risk, and purchasing services are described using the functions-of-health-systems framework. Their progress across three dimensions of coverage: who, what services, and what proportion of health costs is assessed using the coverage-box framework. Patterns in the structure of these countries’ reforms including use of tax revenues to subsidise target populations and steps towards broader risk pools are identified. Trends in progress towards universal coverage, including increasing enrolment in government health insurance and a movement towards expanded benefits packages are reported. Common, comparable indicators of progress towards universal coverage are needed.

JSLU, JSPACA, PKSA, Cash and in-kind transfers for at-risk youth, the disabled, and vulnerable elderly social assistance programm and public expenditure review 7

WORLD BANK
February 2012

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Direct cash transfers for vulnerable elderly and disabled populations have been provided by the Indonesian Ministry of Social Welfare (Kementerian Sosial, Kemensos) since 2006; a similar cash transfer for at-risk youth was inaugurated in 2009. These programs Jaminan Sosial Lanjut Usia (JSLU), Jaminan Sosial Paca Berat (JSPACA), and program Kesejahteraan Sosial Anak (PKSA) for the elderly, disabled, and youth respectively transfer cash directly to beneficiaries. They account for increasing shares of the Kemensos overall budget, but subsidies directed to care and rehabilitation facilities as well as direct provision of institutional care still account for a noticeable portion of the Kemensos budget for these groups.  The report summarises quantitative and qualitative evidence in order to build a sound foundation for evaluating these cash transfer programs . Design features, efficiency and effectiveness of program implementation and operation, and impacts are analyzed. 

A Low-intensity Approach for Early Intervention and Detection of Childhood Disability in Central Java: Long-term Findings and Implications for “Inclusive Development”

KUIPERS, P
MARATMO, J
2012

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Purpose: This paper describes a qualitative follow-up study, conducted eight years after completion of a low-intensity early intervention and detection of childhood disability project in Central Java, Indonesia. The original project sought to increase the level of skills and engagement of existing community health volunteers, for the support of children with disabilities. This follow- up study explored long-term outcomes and implications for the inclusive development approach.

 

Method: Semi-structured interviews were conducted with 18 of the original volunteers. Interview notes were translated and thematically categorised.

 

Results: While the study was qualitative and descriptive, results indicate that despite the low intensity of the project, some early detection and prevention activities were still going on eight years later.

 

Conclusions: The study suggests that a low-intensity initiative such as this, which is closely aligned with the goals of a government department, may indeed achieve some ongoing change by extending the focus of the department towardsdisability-related concerns.

 

Implications: Implications are drawn for the emerging area of “inclusive development”, which similarly seeks to promote change in mainstream services for the benefit of people with disabilities.

Disability, CBR and inclusive development (DCID), 2011, Vol. 22 No. 1

2011

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Original Research Articles

  • Quality of life, perceived stigma, activity and participation of people with leprosy-related disabilities in south-east Nepal
  • The face of disability in Nigeria: a disability survey in Kogi and Niger states
  • The communication deall developmental checklist - inter rater reliability
  • ‘Welcome to my life!’ photovoice: needs assessment of, and by, persons with physical disabilities in the Kumasi metropolis, Ghana
  • Rehabilitation services for persons affected by stroke in Jordan
  • CBR matrix and perceived training needs of CBR workers: a multi-country study

 

Brief reports

  • impact of micro credit scheme for persons with physical disabilities in Herat, Afghanistan.
  • impact of physical therapy on burden of caregivers of individuals with functional disability
  • perceptions of parents of typical children towards inclusive education

 

Mainstreaming disability into disaster risk management in Indonesia and Philippines : lesson learned from the project

SUPROBO, Novina
2011

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This report compiles the lessons learned during Handicap International’s initiatives to mainstream disability into disaster risk management (DRM) through programmes implemented in Indonesia and Philippines.  It presents an overview of the programmes and the lessons learned that were identified and selected with a potential for replication or adaptation by other actors in other contexts, either as a full approach or with a focus on a specific component.

The lessons learned were identified through the development of case studies highlighting important steps of the project, a review of all available documentation, including project reports, proposal and Memorandum of Understanding (MOU) with project partners; notes of workshops, trainings and meetings; as well as interviews with key stakeholders.

This document was developed to accompany a training manual for DRM stakeholders, which provides practical tools and modules on how to implement disability-inclusive DRM. Both documents can serve as resources for DRM stakeholders aiming at mainstreaming disability in their initiatives

CBR matrix and perceived training needs of CBR workers: a multi-country study

DEEPAK, Sunil
2011

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CBR Matrix, proposed in the CBR Guidelines, provides a systematic framework for organising and analysing CBR activities. A sample of experienced CBR workers, active at community level in 7 countries , were asked for information about different activities they actually carry out, so as to understand the applicability of CBR Matrix framework in the field. The CBR workers were also asked to identify their most pressing learning needs in different areas of CBR Matrix.

This study shows that CBR Matrix can be a useful framework to understand field-level activities in CBR projects. The study has identified a number of priority learning needs, in terms of different domains of CBR Matrix, and in terms of different disabilities. It also shows that globally, areas related to advocacy, lobbying, legal protection and rights-based approach, are the most important learning needs identified by CBR workers.

Mainstreaming disability in disaster risk reduction : a training manual and faciliiation guide

HANDICAP INTERNATIONAL
2011

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This training manual was developed to provide information on the link between disability and disasters and the experiences of Handicap International in including and engaging with persons with disabilities in disaster risk reduction (DRR).  It provides information to managers and policy makers in government and non-government organisations. A facilitation guide that includes detailed chapter-by-chapter sample training sessions for use by community groups and other stakeholders addressing the topics in the manual

Child centred disaster risk reduction and climate change adaptation : roles of gender and culture in Indonesia

HAYNES, Katharine
LASSA, Jonatan
TOWERS, Briony
September 2010

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"The principle aim of this research was to investigate the roles of gender and religion in child-centred disaster risk reduction (DRR). Moreover, and through participatory research, informal conversations and direct advocacy, the project team hoped to build knowledge and awareness of child-centred DRR. The research was also designed to validate findings from previous research by the wider project team and to provide a body of empirical evidence in support of child-centred DRR and the Children in a Changing Climate programme"
Working Paper No 2

Child-centred disaster risk reduction : building resilience through participation : lessons from Plan International

PLAN INTERNATIONAL
2010

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This report “presents the results and recommendations of a five-year programme and…includes a series of case studies illustrating how child-centred Disaster Risk Reduction (DRR) supports the delivery of the Hyogo Framework’s Priorities for Action, as well as the realisation of children’s rights to education, health and participation within disaster risk contexts…Child-centred Disaster Risk Reduction is an innovative approach to Disaster Risk Reduction (DRR) that fosters the agency of children and youth, in groups and as individuals, to work towards making their lives safer and their communities more resilient to disasters”

Going to scale with community-led total sanitation : reflections on experience, issues and ways forward

CHAMBERS, Robert
2009

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Community-Led Total Sanitation (CLTS) is a revolutionary approach in which communities are facilitated to conduct their own appraisal and analysis of open defecation and take their own action to become open defecation-free. This report presents CLTS approaches in six countries which differ organisationally with contrasting combinations of NGOs, projects and governments. Practical elements in strategies for going to scale have included: training and facilitating; starting in favourable conditions; conducting campaigns and encouraging competition; recruiting and committing teams and full-time facilitators and trainers; organising workshops and cross-visits; supporting and sponsoring Natural Leaders and community consultants and inspiring and empowering children

 

Practice Paper, Vol 2009, No 1

Annual review of HRH situation in Asia-Pacific region 2006-2007

DING Yang
TIAN Jiang
August 2008

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"This report reviews the Human Resources for Health (HRH) status in the targeted countries by mainly focusing on health education and training, distribution and retention of health workers, community health workers. Eighteen countries have been included in the report: Bangladesh; Cambodia; China; Fiji; India; Indonesia; Lao PDR; Myanmar; Nepal; Philippines; Papua New Guinea; Samoa; Sri Lanka; Thailand; Vietnam; Australia; New Zealand and Mongolia"

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