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Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Positive and Negative Impacts on Caregivers of Children with Intellectual Disability in India

ADITHYAN, G S
SIVAKAMI, M
JACOB, John
2017

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Purpose: The factor integral to the empowerment of children with intellectual disability is the presence and active involvement of support mechanisms such as their family and their caregivers. This study assesses both positive and negative impacts on parents/caregivers of children with intellectual disability in Oddanchatram block of Dindigul District in Tamil Nadu, India.

 

Method: Mixed method techniques (quantitative and qualitative) were used.

 

Results: Although many disturbing realities in the family situation were revealed, there were also positive impacts which were a hopeful sign.

 

Conclusion: Empowering the caregivers of children with intellectual disability is the first step towards inclusion of these special children in society. Various strategies to achieve this goal are discussed in the study. 

2017 HLPF Thematic review of SDG 5: Achieve gender equality and empower all women and girls

UNDESA - SUSTAINABLE DEVELOPMENT PLATFORM
2017

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The gender-responsive implementation of the 2030 Agenda for Sustainable Development presents an enormous opportunity to achieve gender equality, end poverty and hunger, combat inequalities within and among countries, build peaceful, just and inclusive societies, protect and promote human rights, and ensure the lasting protection of the planet and its natural resources. The SDGs provide an important framework for collective action to achieve gender equality and the empowerment of all women and girls and the realization of their full enjoyment of all human rights. This work requires continued attention to the implementation of outcomes of major United Nations conferences and Summits, including the Beijing Declaration and Platform for Action and the Programme of Action of the International Conference on Population and Development, as well as sustained implementation of international human rights treaties. 

Network on inclusive employment of people with disabilities

SHEKULO TOV
2017

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The establishment of an international digital network on inclusive employment of people with disabilities is proposed.

The main goals of this digital network are to:

  • Enhance strategic networking, engagement and dialogue among the different stakeholders around the world
  • Disseminate cutting edge knowledge, good practice and innovations through diverse formats
  • Actively involve people with disabilities in the promoting this issue in all levels.

Activities of the network to include: an electronic mailing list; a monthly webinar and presentations of new research findings and evidences and of policy papers and information material

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.

Spotlight on Sustainable Development Goal 5: Achieve gender equality and empower all women and girls - UN WOMEN 2017

UN WOMEN
2017

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Spotlights are made on areas of the Sustainable Development Goal (SDG) 5, to achieve gender equality and empower all women and girls, and specific targets and indicators are given. The spotlights are on intimate partner violence, harmful practices (including child marriage and female genital mutilation (FGM)), unpaid care and domestic work, women in leadership, sexual and reproductive health and the gender data gap. Data gaps are identified and a five year programme is outlined, Making Every Women and Girl Count, which is designed to provide technical and financial support to countries to improve the production and use of gender statistics in order to monitor the implementation of gender equality commitments in the 2030 Agenda.

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

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

Disability, family and identity

SCHNEIDER, Cort
October 2016

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Many people with disabilities struggle with issues that relate to identity development.  Many people with disabilities find it difficult to develop a positive sense of self. There is also no question that familial relationships play a significant part in the process of identity construction for people with disabilities. Thus, it is important to examine how family relationships influence the process of identitydevelopment for people with disabilities. Conversely, it relevant to explore how a person’s identity development can impact his or her relationship with family members. This article employs an autoethnographic approach to research in order to examine issues that relate to disability, identity and family. It elucidates the complex nature of family scripts and identity. In addition this paper contends that the process that an individual goes through in order to “come to terms” with a disabled identity, can transform the relationships that an individual has with various family members.

 

Considering Disability, Vol.1, Issue 3&4

DOI: 10.17774/CDJ1.32016.2.20575874

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.

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

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How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Roads to inclusion, a tool for identifying progress in community-based rehabilitation projects

February 2016

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The roads to inclusion tool has been developed by ENABLEMENT (the Netherlands) and LIGHT FOR THE WORLD on the basis of an action research programme carried out in Burkina Faso, Ethiopia and North East India. Communities in two sites of each country were asked to define what inclusion meant to them and those definitions were used as a basis for developing this tool. LIGHT FOR THE WORLD and ENABLEMENT hope this tool will support CBR teams in assessing communities’ progress in becoming more inclusive of persons with disabilities and planning activities to further the inclusion process. It promotes reflection on changes related to inclusion rather than judging projects on the impact of their work, and is thus not a tool for impact evaluation or comparing inclusion between different countries and cultures. The tool can be used in a variety of contexts. We recommend adjusting it to fit your organisation’s needs and seeing it as an inspiration on how it could be done, not as a prescription on how it should be done

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

The 2030 agenda : the inclusion of people with disabilities : comprehensive guide

INTERNATIONAL DISABILITY ALLIANCE (IDA)
INTERNATIONAL DISABILITY AND DEVELOPMENT CONSORTIUM (IDDC)
2016

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This resource is an in-depth document that provides a comprehensive guide on all of the sections of the 2030 Agenda and how they relate to disability and people with disabilities. The guide begins by presenting the references in the Sustainable Development Goals (SDGs) to disability and inclusion, and analysing the background of the SDGs and links to teh UNCRPD.and other international movements involving people with disabilities. This further reinforces that inclusion of people with disabilities is not only an international obligation, but also a necessity if the SDG targets are to be met. Once this is established, the guide outlines a number of suggestions to ensure that people with disabilities are included in the SDG processes, including the high level political forum

 

Note: this resource is available in MS PowerPoint, Adobe PDF and text only in MS Word from the link above

 

Ensuring that no one is left behind. High-level political forum (HLPF) 2016 position paper by Persons with Disabilities.

INTERNATIONAL DISABILITY ALLIANCE (IDA)
2016

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This position paper states that "only by utilising the UN Convention on the Rights of Persons with Disabilities (CRPD) as a guiding framework in implementing the SDGs, will it be ensured that exclusion and inequality are not created or perpetuated". Proposals are made and background presented on the topics of: the unfinished work of the MDGs; realising, through an enabling environment, the full potential of persons with disabilities; working together to protect our planet; and reaching the farthest behind first

Improving a web-based employability intervention for work-disabled employees: results of a pilot economic evaluation

NOBEN, Cindy
EVERS, Silvia
VAN GENABEEK, Joost
NIJHUIS, Frans
DE RIJK, Angelique
2016

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Purpose 

The purpose of this study is to improve web-based employability interventions for employees with work-related health problems for both intervention content and study design by means of a pilot economic evaluation. 

 

Methods 

Uptake rate analysis for the intervention elements, cost effectiveness, cost utility and subgroup analyses were conducted to identify potential content-related intervention improvements. Differences in work ability and quality-adjusted life years and overall contribution of resource items to the total costs were assessed. These were used to guide study design improvements. 

 

Results 

Sixty-three participants were a-select allocated to either the intervention (n = 29) or the control (n = 34) group. Uptake regarding the intervention elements ranged between 3% and 70%. Cost-effectiveness and cost-utility analyses resulted in negative effects although higher total costs. Incremental effects were marginal (work ability −0.51; QALY −0.01).

 

Conclusions 

The web-based tool to enhance employability among work disabled employees requires improvements regarding targeting and intensity; outcome measures selected and collection of cost data. With respect to the studies of disability and rehabilitation, the findings and methods presented in this pilot economic evaluation could guide the assessment of future assistive “e-health” technologies.

Gender and disability : a way forward to overcoming multiple discrimination

HANDICAP INTERNATIONAL
2015

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This advocacy briefing paper presents key information about the inclusion of disability in gender policies and programs. It highlights key facts and issues such as women and girls with disabilities facing multiple discrimination, gaps in political and program responses and legal policy and frameworks. It outlines practical steps can be taken by development actors at different levels and suggests ways to measure progress

 

Advocacy briefing paper

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