Parent, carer, person: future plans and the identities of parent carers for people with disabilities (original) (raw)
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Disability & Society, 2016
Interactions between services and families have significant implications for families planning for the future needs of a family member who has a disability. However, little research interrogates the implications of these relationships for parent carers' agency in this planning. This qualitative study explored parents' experiences with public and not-for-profit services during planning. Findings revealed varied and fluid power dynamics, with attempts by carers to shift to more productive power relations, which carried risks and costs. In a context characterised by systemic constraints, these shifts create an iterative planning process, and highlight the need to support parents to use power productively. Points of interest • The relationships that parent carers have with services and organisations have important implications for long-term planning. We know there are issues with these relationships, but we do not understand in depth what impact this has on parents' agency in planning. • This research explored parents' experiences with public and non-profit organisations and services, placing a particular focus on the complex power relationships that could be seen between parents and services, and what this meant for planning. • The power relationships between parents and services were quite varied. They also shifted when parents actively tried to change them in order to create opportunities. The power relationships between parents and services are therefore dynamic. However, attempts to shift power were not always successful, limiting parents' agency. • Trying to create these shifts helped parents but also placed them and their future plans at risk. The nature of these relationships and the broader organisational and policy context also meant that planning tended to be iterative and often uncertain, rather than a clear process. • The research raises questions about how planning programmes and processes can support parents more effectively in this unpredictable context.
British Journal of Learning Disabilities, 2019
• There are a large number of adults with learning disabilities who live with and are cared for by their parents. • There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring. • This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home. • Twelve carers were interviewed individually. • The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective
Aotearoa New Zealand Social Work, 2018
INTRODUCTION: A question that concerns most parents of disabled adults with high and complex needs (HCN) is: "What will happen to my child when I am no longer alive?" One of the factors that could assist these parents in securing a better future for their children beyond their own lifetime is timely succession planning. METHOD: Semi-structured interviews were conducted with 14 Aotearoa New Zealand parents and 18 Indian parents with a view to understanding their wishes and worries concerning the long-term care and well-being of their adult children with HCN. This article focuses on the parents' views on their own role in succession planning. FINDINGS: Based on parents' responses, six key components of succession planning were identified: preparing the child; preparing the informal network; sorting out the living arrangements; securing their financial future; creating a life plan and a training manual; and preparing the community. IMPLICATIONS: The study revealed that not all parents have the necessary skills, resources or even desires to engage in succession planning and hence it becomes crucial that professionals working in the social services sector provide appropriate support to these parents.
In contrast to other forms of family caregiving, becoming the parent or carer of a child with an intellectual disability (ID) implies an ongoing responsibility beyond the attainment of chronological adulthood . At the same time, a discourse of self-determination pervades policy around transition to adult services in ID in England (Valuing People, 2001). In this paper we present a subset of data from a project which aimed to examine how the process of transition from child to adult services in ID is managed. Using data from 8 taperecorded meetings in which transitions were planned and discussed, we examine what happens when the views of the parent/carer and the young adult are in apparent conflict. Drawing on the growing body of interactional work in the field (eg Rapley, 2004;, we use conversation analysis to examine how professionals manage and negotiate this conflict and how some points of view or courses of action ultimately prevail over others. While the discourse of self-determination may prevail in English policy terms, we show how the fact that parents or carers ultimately have a key role in enabling the choices of the young person has a significant impact on these interactions.
Lubelski Rocznik Pedagogiczny, 2022
Introduction: Exploring people's plans, hopes and perceptions of future can help us understand their inner world, intentions, drives, and meaning ascribed to their lives. Little do we know, however, about this sphere in fathers with intellectual disabilities (ID). Research Aim: The aim of the study was to explore how fathers with ID visualize their children's future, what their plans and hopes are and how these plans and hopes are ascribed with meaning by them. Method: Interpretative Phenomenological Analysis was used to examine plans, hopes and vision of the future as expressed by fathers with ID. The research was conducted using in-depth interviews with twenty fathers with mild to moderate ID (aged 21-54). Results: Three superordinate themes and 10 constituent themes were extracted from the data. The superordinate themes included: (1) vision of the child's future-hopes and fears, (2) objects of plans and hopes, and (3) towards fulfilling plans and hopes. Conclusion: The findings can be used by professionals working in institutions supporting people with ID and for social services to help them raise awareness about plans and intentions of fathers with ID-a group commonly regarded as reluctant to cooperate.
“40 Years Is an Awful Long Time”: Parents Caring For Adult Sons and Daughters With Disabilities
Behavior and Social Issues, 2009
Older people who are caring for their adult sons and daughters with disabilities are under tremendous stress because they may suffer health problems themselves; have financial problems due a lifetime of caring; may have to care on their own due to the death of their spouse; worry about the future care of their child; and may feel uncomfortable approaching professionals for help. Professionals working with these families need to take contextual pressures into consideration when planning intervention. Twenty-nine parents of 27 adults with intellectual and/or developmental disabilities (including autism) were asked about present care and service arrangements, health issues, family support, and "futures planning." The research reported here identifies complex networks of relationships. Virtual absence of structured futures planning was one of the key issues. Recommendations are made for professionals working in this field.
British Journal of Learning Disabilities, 2010
Accessible summaryWhen sons and daughters with disabilities live with their parents all their lives, this can sometimes be difficult for the parents as well as the sons and daughters. We asked the parents what they like and dislike about having their sons and daughters living with them and what makes it easy and what makes it difficult. The parents who took part in this study told us that• They loved their sons and daughters very much and had much fun living together;• Sometimes they had difficulties getting help or services;• They worry a lot about the future and what will happen when they can no longer look after their sons and daughters with disabilities;• It is really important that families plan ahead so that everyone knows what will happen when parents get older and can no longer look after their sons and daughters with disabilities.When sons and daughters with disabilities live with their parents all their lives, this can sometimes be difficult for the parents as well as the sons and daughters. We asked the parents what they like and dislike about having their sons and daughters living with them and what makes it easy and what makes it difficult. The parents who took part in this study told us that• They loved their sons and daughters very much and had much fun living together;• Sometimes they had difficulties getting help or services;• They worry a lot about the future and what will happen when they can no longer look after their sons and daughters with disabilities;• It is really important that families plan ahead so that everyone knows what will happen when parents get older and can no longer look after their sons and daughters with disabilities.They loved their sons and daughters very much and had much fun living together;Sometimes they had difficulties getting help or services;They worry a lot about the future and what will happen when they can no longer look after their sons and daughters with disabilities;It is really important that families plan ahead so that everyone knows what will happen when parents get older and can no longer look after their sons and daughters with disabilities.SummaryResearch-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and ‘future planning’. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and ‘future planning’. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.
What the future holds: Older people caring for adult sons and daughters with disabilities
Improvements in healthcare have lead to unprecedented population ageing that affects all cultures, gender, and levels of impairment . This has profound implications, especially for ageing parents who continue to be the main carer for adult sons and daughters with disabilities. While Valuing People (Department of Health, 2001) and Valuing Carers (DHSSPS, 2002) demand that service providers must have plans for all individuals with learning disabilities who live with older carers and ensure service user choice and control, health and social care systems have not kept apace (Bamford, 2006; McDowell & Mawhinney, 2007). This report is based on interviews with 29 parents reporting on 27 adult sons and daughters with disabilities in which issues were explored in relation to present life circumstances, support from family and service providers, levels of health and impairment, and futures planning. Findings expose high levels of commitment and love for sons and daughters in the face of, oftentimes, severe disabilities and carers' ill health. Carers experienced twice the level of psychological stress than the general population and had to make life adjustments that do not concur with expectations of peers who have typically developed adult sons and daughters.
Disability and the restructuring of welfare: The problem of partnership with parents
International Journal of Inclusive Education, 2003
Abstract Parent Partnership Services are now required in every LEA in England and Wales. Research has documented parents’ experience of dissatisfaction when engaging with services responsible for providing for children’s special educational needs, and differences in priorities and assumptions between parents and professionals. The analysis in this paper suggests that Parent Partnership Services have the potential to make the system work in a more understandable, friendly, respecting and involving way for parents. Evidence is drawn from interviews in Newby LEA with twenty-four parents and both LEA and voluntary agency Parent Partnership Officers. However, tensions and assumptions were identified which suggest a limit to authentic partnership possibilities. The political nature of the discourse of partnership continues to be ignored. There remains little awareness of the need to negotiate the meaning of partnership. Partnership was assumed to be a ‘good’, with little understanding of the need to work in ways that avoid its potentially disempowering effects. Parent Partnership Officers represent a further tier of ‘professionals’, which for some parents remove them from those who are the decision-makers. Parent Partnership Services remove from schools the arena of parent partnership when a child is undergoing statutory special needs assessment. Such services move this area of partnership into a space between schools and the LEA – which may distance responsibility of schools to take seriously the need to engage with parents as partners.