“It’s like me leaving a manual of me behind”: Parents talk about succession planning of long-term care and support for their disabled adult children with high and complex needs (original) (raw)
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Journal of Intellectual Disabilities, 2012
Background: Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers' preferences for future care and the support systems required to make such future plans.
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.
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.
Journal of Applied Research in Intellectual Disabilities, 2020
This paper sets out a systematic review of empirically evaluated intervention studies and structured models/ frameworks of future care planning for adults with intellectual disability by family carers. The failure to adequately plan for when they are older is one of the key barriers to successful ageing for people with an intellectual disability (McCallion & Nickle, 2008). Given that the majority of families intend to provide lifelong support at home for loved ones with intellectual disabilities and that people with intellectual disabilities themselves largely wish to remain in the family home (McConkey, McConaghie, Barr, & Roberts, 2006), it is essential that families engage in future care planning "if crisis situations are to be avoided, particularly the double shock… of losing their home at a time when they are also bereaved"(Gorfin & McGlaughlin, 2004). Furthermore, the need for general engagement in future planning is exacerbated by macro-level factors of ageing populations and post-institutionalization policy and service contexts which will likely lead to more people with intellectual disabilities ageing in a family care environment in the future. At the same time, increased life expectancy for people with intellectual disabilities
Parent, carer, person: future plans and the identities of parent carers for people with disabilities
Disability & Society, 2016
Parent carers are often central in future planning for their children with disability; however, little is known about the implications of planning for parents' futures and aspirations. In understanding these, parents' own identities are important, but how these identities intersect with their planning is not well understood. This study explored how parents were positioned in discussions about planning. Interviews with parents and planning service staff highlighted three positions among parents-carer, parent, and person-representing multiple, intersecting identities. These impacted on and were impacted by planning in particular ways. Understanding these processes may assist programmes to support parents more effectively.
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.