A Story To Tell: learning from the life-stories of older people with intellectual disabilities in Ireland (original) (raw)
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British Journal of Learning Disabilities, 2013
• This article synthesises current literature regarding ageing and service provision for people with an intellectual disability. • People with intellectual disability are living longer. • Services need to respond to the needs of older people with intellectual disability. Summary People with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age profile of clients and the support services they require. While Ireland had specifically trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as been at odds with the philosophy of supporting people with intellectual disability live at home with their family and the primary care system. As the ageing population is rising, intellectual disability services need to proactively develop and respond to this changing age profile by reviewing and adjusting the way in which they deliver services, not only in terms of how services develop and respond to a changing age profile but also in terms of collaborative working across all health services.
Journal of Clinical Nursing, 2013
Aim and objectives. To explore the experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Background. Increased longevity for the older person with intellectual disability is relatively a new phenomenon with social and medical factors having significantly increased the lifespan. The ageing population of people with intellectual disability is growing in Ireland, and they are outliving or expected to outlive their family carers. Design. A qualitative Heideggerigan phenomenological approach allowed the researcher become immersed in the essence of meaning and analyse how registered intellectual disability nurses working with the older person perceive, experience and express their experience of caring. Methods. After ethical approval was granted, data were collected through semi-structured interviews from seven participants and were transcribed and analysed thematically using Burnard's framework for data analysis. Results. Three key themes were identified: 'care delivery', 'inclusiveness' and 'clientfocused care'. The study highlights the need for effective planning, an integrated approach to services and that the registered intellectual disability nurse needs to be integrated into the care delivery system within the health service to support client and family carers in the home environment. Conclusions. Overall, the study shows the importance of teamwork, proactive planning, inclusion, attitudes, individualised care, knowing the person and best practice in providing care for older people with intellectual disability. Relevance to clinical practice. This paper reports on the findings of a study which explored the experiences of caring for the older person with intellectual disability. Teamwork, proactive planning, client-centred approach and supporting clients living at home are important as ageing is inevitable.
Scandinavian Journal of Disability Research
This paper discusses youth and the significance of age in the lives of persons with profound intellectual and multiple disabilities. The analysis is based on an ethnographic research project that explores what makes a good life for this group of people. The findings indicate that whilst the meaning and significance of youth and age were discussed often by care workers and family members, age had very little significance in the lives of our research participants. Youth as a phase of life gets lost in the transition from children's services to adult services: age in the lives of persons with profound intellectual disabilities means merely a move from one service system to another. For the care workers, age provides a way to evaluate and criticize the service system and whether it caters for the individual needs of persons with profound intellectual disabilities.
Stories affording new pathways: bridging the divide between aged and disability care
Journal of Organizational Change Management, 2014
Purpose -To examine the time, place and space of stories in opening up 'intractable' problems by affording new pathways in changing organizations. The empirical focus is on a project undertaken by two organisations located in Australia. The organizations -IRT, a large aged care provider and Greenacres Disability Services, a disability support service -collaborated with the researchers in identifying the nature of the problem and storying new ways for tackling the transitioning needs of people with intellectual disabilities into aged care services.
Identities on paper Constructing lives for people with intellectual disabilities in life story books
This paper examines how life story books were used in two care settings in the UK for people with complex support needs. The context of the research was the transition of six people from a long stay hospital to a community home. Discourse analysis was used to analyse talk and texts in the care settings including staff interviews, meetings and the written text in the life story books themselves. Three uses of the books are highlighted in the analysis. They were used as a resource for: getting to know the person; defining the person; and displaying personality and uniqueness. Mutual identities of the various participants were constantly changing with reference to the life story books. It is suggested that the books encourage acceptance in the care relationships. The analysis demonstrated that despite the different uses of the life story books, highlighted by the care staff, there is an underlying assumption that what is written in the books is a direct representation of the person. It appears that once this type of information is committed to paper the identity of the person becomes reified.
19-stories-social-inclusion-ireland.pdf
2019
Irish disability policy, in line with international treaties such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), aims to support people with intellectual disabilities to live included lives in their community. Despite this, people with intellectual disabilities are far more likely to experience social exclusion than non-disabled people. However, there are also people with intellectual disabilities taking part in their communities and living ordinary lives all over Ireland. The aim of this research is to let people hear their stories and to show that it is possible for people with intellectual disabilities to live socially included lives in communities. This research is inspired by the ’19 Stories of Social Inclusion’ project carried out in Australia. Its approach was to start with the ‘success stories’ and work backwards to find out how people have created socially included lives for themselves. This report is accompanied by an easy to read report of the research as well as a series of stories, some told through video, some through images and text, hosted on the Inclusion Ireland website. The dissemination of the participants’ stories by accessible means aims to support people with intellectual disabilities and families to contribute to bringing about greater levels of social inclusion. Taken together, the report and stories demonstrate what successful implementation of Article 19 of the UNCRPD looks like.
Family carers of adult persons with intellectual disabilities on the island of Ireland
Journal of Policy and …, 2006
Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receiveor need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Usingboth sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with familycarers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have receivedrelatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role.
The situation of younger people with disabilities living in nursing homes in Ireland - phase 1
2018
This research is very timely given Ireland’s recent ratification of the UN Convention on the Rights of Persons with Disabilities, the imminent full commencement of the Assisted Decision Making (Capacity) Act, 2015 together with proposed legislation dealing with Deprivation of Liberty.1 Although the sample in the study is small, it offers valuable insights into the referral of, and pathways into nursing homes for younger people with disabilities. Whilst law and policy are centred on the enabling of people with disabilities to live the lives of their choosing in the community, the report notes that the supports to enable them to do so ‘are underdeveloped, unplanned and often not sufficient to meet their needs’. Instead of taking a human rights based, social model approach, which would look to the person’s will and preference, there is an overemphasis on the medical model in the assessment form. There is little focus on a person’s abilities, capabilities or on options for care in the c...
Lived experiences of ageing and later life in older people with intellectual disabilities
Ageing and Society, 2013
ABSTRACTThe aim of this article is to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. The article is based on a study with a phenomenological approach, grounded on the concept of life-world. Individual, qualitative interviews were conducted with 12 people with ID (five men, seven women), between the ages of 48 and 71 (mean=64), who lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and sub-themes. The findings of the study reveal the informants' lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes, ‘age as a process of change’ and ‘existential aspects of ageing’, each with three sub-themes. The body is an essential element in their experience of ageing and growing old, and in how this experie...