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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.

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.

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

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

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

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