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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.

The impact of COVID-19 on disabled people in Northern Ireland

FITZSIMONS, Sean
O'NEILL, Emma
CRAWFORD, Alison
September 2020

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Key findings and recommendations are reported from an online survey published in April 2020 to gather the experiences of disabled people, their families and carers during the COVID-19 outbreak in Northern Ireland. The survey went live on April 1st 2020 and closed on April 30th 2020.  Over 400 survey responses were received, including over 1300 written statements. 

Key findings are reported in the areas of: social care; physical health; mental health and emotional wellbeing; carers; accessing food and medicine; accessing information; employment and training; social security benefits and community support

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Send all my friends to school : a global campaign for education UK evaluation of UK’s aid to education for children with disabilities

NOCK, Stephen
DAVIS, Warren
Eds
2014

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This report reveals a major gap between DFID’s inclusive education policy and practice, with weak implementation, as a result of a lack of resources and capacity. GCE UK’s report highlights that there is an urgent need for a significant increase in policy attention and resources to address the major structural and social barriers that children with disabilities currently face in accessing education. It concludes by making key recommendations.  It finds that the issue needs much greater prioritisation within DFID, and that there is an urgent need for DFID to develop a systematic approach towards the issue, both directly within its education portfolio, and by mainstreaming the issue across other areas of DFID operations. It recommends that it is critical that DFID works to embed disability throughout its development programmes to achieve long-term change, even as governments change and key individuals move on

Child first, migrant second : ensuring that every child matters

CRAWLEY, Heaven
February 2006

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This paper attempts to address the growing tension between family law, policy and practice and immigration law, policy and practice. The paper claims that this tension 'is closely associated with the politicisation of asylum and immigration policy and the growing use of the welfare state as a tool for controlling immigration'. The aim of this paper is to examine the impact of recent changes in asylum and immigration law and practice on children subject to immigration control, which increasingly look at immigrant children, first as immigrants and second as children. It focuses on four areas of experiences: policy and practice around separated asylum seeking children; the use of poverty and detention as instruments for controlling families, and the implications for the children; the implications of current policy on trafficked children; the invisibility of privately fostered children. This paper is aimed at policy makers, judges, practitioners and social workers who routinely come into contact with children subject to immigration control

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