‘I hope he goes first’: Exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues?

Abstract

Accessible Summary• This paper attempts to find out why it is that many adults with a learning disability and their older parents and carers do not make plans for their future. • The author takes a look at other research to try and find the reasons for why this is. • The author finds that this may be to do with the type of relationship families have with professionals and if they feel able to trust them. • The author suggests ways to improve these relationships. SummaryThis paper reports on the key findings from a review of the literature on future planning for adults with a learning disability who live with older parents and carers. This area has gained attention in recent years, owing to the improved life expectancy of people with a learning disability and the increasing number who now outlive their parents. For those currently living with older parents and carers, this has major implications for the future, with the likelihood that formal services will eventually take over the care role. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, regardless of several policy initiatives to encourage active planning for the future, the take-up rate remains poor. This review of the literature seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the ª The Official Journal of the British Institute of Learning Disabilities relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so-called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication.

Agency, social and healthcare supports for adults with intellectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review

“…Adults with intellectual disabilities are generally not involved in making end‐of‐life decisions for themselves (Flynn et al., ; Forbat & McCann, ; Tuffrey‐Wijne et al., ; Tuffrey‐Wijne, Bernal, & Hollins, ; Tuffrey‐Wijne, Bernal, Hubert et al., ) and they rarely have advance care plans in place (Bibby, ; Heller & Caldwell, ; Kingsbury, ; Kirkendall, Linton, & Farris, ). In their recent literature review, Kirkendall et al.…”

Planning for the future: Exploring the experiences of older carers of adult children with a learning disability

“…Given the legal requirement to offer a carer's assessment, this may appear surprising, but is in line with research by Seddon and Robinson (). This lack of interest, and consequent absence of information, is often cited as a key barrier to future planning, with many families not being aware of possible options (Bibby, ). The majority of carers in this study had received new information from their support worker which they valued highly, especially when it broadened their opportunities (e.g., discussion of foster care) or offered particular help (e.g., details of a specialists solicitor).…”

The changing face of parent advocacy: a long view

“…For example, in the twenty-first, as in the twentieth and earlier centuries, families act as the first and last resort for care (Dumbleton 2013; Foundation for People with Learning Disabilities 2012; House of Lords and House of Commons Joint Committee on Human Rights 2008; Prosser 1997). One possible reason for this is that families describe a lack of confidence in current and future service provision, particularly what will happen when parents die (Bibby 2013;Davys, Mitchell, and Haigh 2014;Fitzroy 2015;Neary 2015a). Families also report problematic relationships with professionals, and difficulty in getting the family's knowledge of the person taken into account (Bibby 2013;Davys, Mitchell, and Haigh 2014;Jingree and Finlay 2012;Michael 2008;Ryan 2015a;Ryan and Runswick-Cole 2008).…”

“…One possible reason for this is that families describe a lack of confidence in current and future service provision, particularly what will happen when parents die (Bibby 2013;Davys, Mitchell, and Haigh 2014;Fitzroy 2015;Neary 2015a). Families also report problematic relationships with professionals, and difficulty in getting the family's knowledge of the person taken into account (Bibby 2013;Davys, Mitchell, and Haigh 2014;Jingree and Finlay 2012;Michael 2008;Ryan 2015a;Ryan and Runswick-Cole 2008). Lastly there is an enduring challenge of achieving a balance between autonomy and protection (Foley 2012;Ledger et al 2016;Tilley et al 2012) in which families are often considered risk averse.…”

“…Families do not trust the state to provide safe, consistent care for their relatives (Bibby 2013;Davys, Mitchell, and Haigh 2014;Neary 2015a). They have good reason to be suspicious.…”