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Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Disability Employment Policy 101 Guide

LeBLANC, Nicole
BUEHLMANN, Eric
2019

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This USA based toolkit is intended to help self-advocates and their allies to advocate for Real Jobs for Real Pay and for Competitive Integrated Employment (CIE). It covers the issues with sheltered workplaces and the advantages of CIE. It also covers what individuals can do locally, at the State level and nationally. The Workforce Innovation and Opportunity Act (WIOA) is outlined. Four self advocate stories are given.

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

Stigma, disability and development

BOND DISABILITY AND DEVELOPMENT (DDG)
November 2017

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This briefing considers how stigma affects people with disabilities and why challenging stigma is a critical issue for development.

 

Examples of successful efforts by UK non-governmental organisations (NGOs) to reduce and eliminate stigma are briefly outlined including: self help groups; alliances between groups (including DPOs); staff training; skills training and wider awareness raising.

How CBM Australia supports engagement with government for disability inclusion and prevention

CBM AUSTRALIA
March 2016

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CBM Australia engages both directly and indirectly with governments. Indirectly, CBM Australia supports other organisations, for instance disabled people’s organisations or civil society organisations to engage with governments. This report looks at the different ways that CBM partners seek influence government and promote sustainability. It considers the different roles and relevance of activism, advocacy, service delivery and advisory approaches.

 

The cases in this report were identified and gathered through semi-structured interviews with CBM’s Program Officers, Technical Advisors, regional/country office and project staff in-country, as well as drawing on reports and evaluations. The report starts with a section explaining the four different approaches to working with government, followed by a brief introduction to each approach, highlighting what CBM are doing and the key lessons learned. Each section is followed by case studies giving more detailed insight into how CBM are engaging, key achievements, challenges and the lessons learned. Fifteen case studies covering key projects from CBM Australia’s International Programs and the Inclusive Development Team are described in this report.

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Support to organisations representative of persons with disabilities

GEISER, Priscille
ZIEGLER, Stefanie
ZURMÜHL, Ute
July 2011

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This policy paper is based on the practice and experience acquired by Handicap International (HI) in working with and supporting organisations representative of people with disabilities. The paper first outlines the development of DPOs and their particular roles and responsibilities with regards to the goal of improving the situation of persons with disabilities. It then discusses the importance of supporting DPOs specifically regarding HI’s engagement, presents key components of projects, and highlights links with HI’s institutional framework documents. This paper is useful for anyone interested in support to organisations representative of persons with disabilities

Political participation of women with disabilities in Cambodia : research report 2010

HANDICAP INTERNATIONAL FRANCE (HIF)
THE CAMBODIAN DISABLED PEOPLE’S ORGANIZATION (CDPO)
THE COMMITTEE FOR FREE AND FAIR ELECTIONS IN CAMBODIA (COMFREL)
2010

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"This report examines the interests of women with disabilities, as well as the barriers to their participation. It also provides recommendations for the promotion of their electoral and political participation, while highlighting opportunities and strategies for intervention and engagement by relevant stakeholders"

Youth to youth|Disability-sensitive youth to youth : methodologies in HIV and AIDS

HANDICAP INTERNATIONAL KENYA
2010

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This video features HIV and AIDS prevention and education initiatives in Kenya. It particularly targets the youth population due to a lack of available information and risk behaviours, such as sexuality, drug use and alcohol use. In order to prevent risks and present treatment options for the youth who are AIDS-carriers, several youth groups organized the following activities to prevent and fight the disease: street theatre for awareness-raising, group education sessions, and promotion of VCT services for communication and information. This video contains several testimonies and one features Mercy, a young girl who has AIDS after working as prostitute to feed her two children and is now involved in a support group

Keeping the promise : interventions by persons with disabilities against HIV/AIDS

HANDICAP INTERNATIONAL KENYA
2009

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People with disabilities, including people with disabilities who are living with HIV, are often excluded from their community and their family. This video presents testimonies of people with disabilities who are living with HIV and proposes actions in Kenya to fight against their exclusion. For example, it highlights support groups that have been created to educate people with disabilities, living with HIV or not, on sexuality, HIV/AIDS, and how to live positively with disabilities and reduce the stress caused by them. Another section of the video presents a support group for parents of children with disabilities where it is encouraged to talk about sexual abuse and violence on children and prevention of sexually transmitted diseases. Support groups for hearing and visually impaired people are also presented in the video. In addition to support groups, education and prevention are also promoted by through sport and street shows which contribute to the social inclusion of people with disabilities living with HIV

Funding for self-employment of people with disabilities : grants, loans, revolving funds or linkage with microfinance programmes

DE KLERK, Ton
March 2008

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"In 2005, Handicap International commissioned a study on the practices of funding for self-employment activities of people with disabilities (PWD), with a special focus on access to microfinance. The overall goal of the study was to produce a framework document highlighting good practices, strategies, tools and operational methods that guarantee the efficiency and sustainability of self-employment projects for PWDs. The first phase of the study consisted of a literature review and a worldwide survey. Through this first phase the research team identified the most innovative programmes for further analysis through field visits. In the second phase field visits were conducted in Afghanistan, Bangladesh, Ethiopia, India, Kenya, Nicaragua and Uganda, while regional workshops were organised in Dhaka and Nairobi. Phase three involved consolidation and analysis of the information and finally drafting of the framework document. This paper summarises the findings and good practices as presented in the framework document, based on the results of the literature review, the survey and the field research. It is not a scientific paper, i.e. it doesn't contain a discussion of the literature reviewed or systematic reference to sources, the same as the document on which it is based, as it is primarily meant for practitioners"
Leprosy Review, Vol 79, Issue 1

Change your life with human rights : a self-advocacy guide for people with disabilities

STEIN, Michael
2008

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This guide provides self-help advocacy advice for people with disabilities. It includes explanations, exercises and resources that provide clarity on the Convention on the Rights of Persons with Disabilities, and outlines how to advocate and influence legislation. This resource would be useful for anyone with an interest in human rights, advocacy and influencing legislation

Women inspiring women - a peer group in Sri Lanka improves the lives of people with disabilities | Moving forward : toward decent work for people with disabilities|Examples of good practices in vocational training and employment from Asia and the Pacific

PERRY, Debra A
Ed
2003

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This paper is about a Sri Lankan disabled women's organisation, founded by a disabled woman, to empower women through a support network that allows them to exercise their rights and gain access to services, skills training and self-employment. In Sri Lanka, women with disabilities have few opportunities for economic independence and most are confined to their homes, protected by their families from a society that stigmatises them, particularly in rural areas

Positive development : setting up self-help groups and advocating for change. A manual for people living with HIV

MAASDORP, Aubrey
LONG, Siân
BEHRMAN, Nina [ed]
1998

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This manual has been written for people working in groups. It aims to offer suggestions and ideas to people and organisations who are beginning new groups, or planning to do so and who have limited experience of running a group. It will also be useful for trainers and facilitators who have been running groups for some time or who are helping others set up their own groups. It has developed from experiences of people living with HIV who have been working together in groups around the world. It is practical in focus and written in accessible language, with checklists, examples and tips throughout. Part 1 looks at why we set up groups and the benefits of group working. Part 2 looks at the practicalities of setting up groups, organising meetings and keeping the group going. Part 3 looks at some skills and activities for developing and maintaining positive group dynamics. Part 4 explains how to develop a project step-by-step, from planning to evaluation. Part 5 offers advice on finding sources of funding, Part 6 deals with disclosure issues, and Part 7 looks at advocacy and campaigning at all levels

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