Análisis harmónico del sistema eje-ruedas.

Futures planning is of great significance to adults who have a learning disability because if no plans are in place or if plans are inappropriate, emergency steps may be taken which are unsuitable for the individual and their family. Despite, or perhaps because of, the significance of futures planning for learning disability families there appears to be generalised worry on the part of carers about the future and what will happen to the learning disabled person (Bowey and McGaughlin 2007; Mansell and Wilson 2010; Taggart et al 2012). Carers may also have specific concerns such as the level and quality of care available from service providers outside the family (Gilbert et al 2008), and that service options outside the family are lacking compared to family support. Older parents or carers perceive the learning disabled person to be vulnerable (Bowey at al 2005) and worry about the role of siblings when parents are no longer able to provide care (Jokinen and Brown 2005; Davys and Haigh 2008; Mansell and Wilson 2010; Taggart et al 2012). The presence of more maladaptive behaviours, a diagnosis of mental illness, fewer non-disabled children, poorer affective relationships between siblings and not being able to identify who would assume primary care responsibilities are further areas of parental concern (Prunchno et al 1996).

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When making future plans for people who have a learning disability, a number of aspects need to be addressed, such as where the person will live, financial, guardianship and lifestyle issues. Four types of plan were identified in an Australian study by Bigby (1996): implicit and explicit key person plans, financial and residential. Key person plans were the most common, followed by financial and then residential plans. Within the key person plans, siblings were the people most likely to be nominated as key person, however nominations were not based on family relationship alone, but rather the nature and quality of the sibling relationship. The main reason for the implementation of plans was parental death or incapacity. According to the literature, the number of families who have made plans for the future is variable. From a USA perspective (Heller and Kramer 2009) only 32% of families had made residential plans. From a Canadian study, Jokenin (2008) reported variation in the degree of futures planning between families; whilst in the UK, just over half the number of family members were said to have some form of futures plan in place (Bowey and McGaughlin 2007; O’Grady 2007), whilst a small scale qualitative Irish study (Dillenburger and McKerr 2010) found that most older parents and carers had not made long term plans for the future. Similarly low proportions of plans were apparent in the published results of Stage one of this thesis (Davys et al 2010).

In reference to Bowey and McGaughlin (2007), around half the number of families of learning disabled people did not feel ready to plan, which is in accordance with barriers to futures planning. Where plans did exist the depth has been seen to vary from very vague to explicit, although most have been reported as vague, even where open discussion with parents was said to occur (Bigby 1996; Taggart et al 2012); this again was evident in the publication of Stage one of this research (Davys et al 2010).

Impediments to futures planning include a lack of information on accommodation, finance and guardianship issues along with the need for case management,

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advocacy and support groups (Heller 2000; Bowey et al 2005; Gilbert et al 2008; Arnold et al 2012). Joint working between families and service providers can also be a significant concern, as complications may occur where there is a perceived or real lack of co-operation between family members and care providers. Inter-family conflicts can also generate complications. Some carers have experienced difficulty in ‘letting go’ within the futures planning process, believing that the family home is the best environment and provides the highest level of care (Bowey et al 2005). According to an Irish study by Taggart et al (2012) the most acceptable options for future care from an older carer perspective was for the learning disabled person to remain in the family home with support from the family or from paid staff or to live with a sibling. The least preferred carer options were general nursing home or non- specialist residential facilities.

Further barriers to futures planning are that some older carers prefer to ignore the issue in the belief that support will be provided as and when the need arises (Dillenburger and McKerr 2010; Taggart et al 2012). In addition to this some learning disabled people lack awareness of later life issues such as changes in health and social situation, leisure, wellness and retirement, which makes it difficult for them to make an informed choice for their future. Some family carers claim that learning disabled people may not want to move away from the family home because they worry about how they would adapt to a new environment and new people; a further complexity is that learning disabled people may have care responsibilities for an older parent or carer and worry about how this person would manage without their support (Heller 2000). In studies where learning disabled respondents have discussed options for the future, plans have again tended to be vague, although participants have expressed a preference to stay in the local area, to be near family, friends and that which is familiar (Bowey et al 2005).

Specific parental issues have been linked to futures planning and a range of parental wishes are expressed. Some older parents who have made plans would like the

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learning disabled person to live with a family member (Heller 2000) and some want this to be a typically developing sibling (Knox and Bigby 2007; Taggart et al 2012). Alternatively, although some siblings have offered to take on the care of the learning disabled person in the future (Gilbert et al 2008), other parents have not wanted this, feeling that siblings had their own lives and responsibilities. Some parents have also expressed the view that the typically developing child had lost opportunity in childhood because of the disabled child and therefore do not want to place a perceived burden upon them (Todd and Shearn 1996; Dillenburger and McKerr 2012). Parents may feel a sense of being ‘torn’ between the needs and wishes of the disabled person and the typically developing sibling; they may accept the need for the non-disabled son or daughter to have their own lives, but equally want them to have ongoing involvement in the long-term future of the learning disabled person. This was found in the results of my Masters level work which was concerned with the older parents of learning disabled people and preceded this thesis (Davys and Haigh 2008).

Although future plans and living arrangements may be discussed within the family, there is evidence of inter-family diversity and confusion. Krauss et al (1996) demonstrated that in 22% of families where siblings expected the learning disabled person to live with them, their parents had also put the name of the disabled adult on a waiting list for residential services. This may indicate divergence of opinion within the family or a desire on the part of parents to have a contingency plan. Similarly Griffiths and Unger (1994) found that although greater communication within families regarding futures planning was positively associated with sibling satisfaction with plans, there was some level of confusion between parents and siblings; although the majority of parents in this study said they had discussed future plans with siblings, over half of these siblings claimed they were unclear about future plans.

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Factors that may influence future care giving and expectation of future care giving by adult siblings of people with intellectual and developmental disabilities, include: being female, having a close relationship with the disabled person, living close by, being the only other sibling in the family and where parents were currently able to care for the disabled person (Burke et al 2012). Further influences upon family residential plans are social, local and financial resources, personal coping styles, family culture and ethnic background. As there is such a wide array of factors that influence futures planning, it makes it a potentially difficult area to negotiate from a range of perspectives. There have been a number of futures planning initiatives across America, Canada and parts of Europe; however despite the provision of programmes and information on legal, financial, housing and community options, anecdotal feedback suggests that such programmes have limited success in actually leading to the development of future plans (Heller 2000).

Showing parity with typically developing siblings regarding the care of older parents and siblings of mentally ill and physically disabled people, adult siblings of people who have a learning disability often expect to provide some level of care or support to the learning disabled person in the future (Heller and Arnold 2010). This expectation and sense of future responsibility has been seen in some studies to have been present in childhood and adolescence, demonstrating anticipation of a future care role and concern for the future health and well-being of the disabled child (Cate and Loots 2000; Hames 2008, Wilson 2011; Angell et al 2012). Adult siblings have reported particular concern for the time when parents are no longer available to provide previous levels of support (Griffiths and Unger 1994; Greenberg et al 1999; Benderix and Sivberg 2007; Orsmond and Seltzer 2007). There is a general feeling that family should then assume responsibility for the care of a learning disabled person, although the quality of the relationship and degree of contact between siblings where one has a learning disability varies (Zetlin 1986) and is likely to influence a care giving role.

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With consideration of future expectations for co-residence between learning disabled people and their siblings, some brothers and sisters plan to co-reside whilst others do not. In a literature review related to futures planning, Heller (2000) claimed that between 25% and 50% of families had made plans for future living arrangements and that nearly half of these families wanted the learning disabled person to live with a family member. In contrast, Bigby (1996) found that only six families out of 62 planned for sibling co-residence. Despite this, there is often an expectation to provide ongoing support and to be involved even where siblings plan to live apart. Regular face to face contact with the disabled person, ongoing discussion about future plans with parents and the intention to take on the future role of legal guardian are linked positively to expectations of future care giving (Krauss et al 1996), as is satisfaction with a care giving role and the number of shared activities between siblings and their disabled brothers and sisters. This further suggests that the relationship between siblings is significant in any plans for co-residence (Heller and Kramer 2009, Burke et al 2012).

Alongside their counterparts in the fields of mental illness and physical disability, siblings of learning disabled people are concerned about the future, and again, specifically the time when parents will no longer be available to provide previous levels of care (Egan and Walsh 2001, Orsmond and Seltzer 2007; Benderix and Sivberg 2007). Some siblings have expressed pessimism about the future for their disabled brother or sister, and concern about their ability to match parental standards of care; these concerns may have been present since teenage years and early adulthood (Benderix and Sivberg 2007), raising the possibility that siblings take on their parents’ fear regarding the future for the learning disabled person, a view supported by Kramer (2008) and Karasik (1993). That siblings worry about parental death and responsibility for financial, legal and care arrangements is reinforced by Rawson (2009) and ESRC (2011), although factors that affect sibling concerns are linked to a range of variables. Orsmond and Seltzer (2007) claimed that compared

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to a Down syndrome sibling group, siblings of autistic people were more pessimistic about the future for the disabled person; although the reason for this pessimism was not clearly stated, the inference was that attitude was linked to the type of learning disability. This was further supported by Greenberg (1999) who compared adult siblings of people who had a mental illness and those who had a learning disability and found that siblings in the learning disability group had a significantly higher expectation to care than those in the mental illness group.

Summary of key theme

It has been demonstrated throughout this theme that adults expect to provide some level of support to family members. This may be the case in typically developing families where siblings support older parents, but also in the context of disability where siblings may support both older parents and a disabled sibling. Across all families however, whether or not disability is present, family support is often associated with circumstance, events and the life stage of family members, in addition to issues of proximity, gender and relationships. The presence of a most involved sibling is a phenomenon found in typically developing families and where disability is present. When disability is present in a family, be this physical, mental or learning disability, most adult siblings worry about the future, particularly for the time when parents are no longer able to provide previous levels of support; although a care role may be anticipated, adult brothers and sisters may not expect to provide the same levels of care that parents previously provided. Common concerns of adult siblings include the impact of a care role upon their own lives and families, not having enough information and knowledge to deal with matters arising and in particular, financial and legal issues. Proximity and health matters, for both themselves and the disabled person are also a worry.

Futures’ planning within families appears to be an area of confusion with varied results. In typically developing families there is little evidence of detailed futures planning; it is rather that families respond to a situation when it arises, as is the

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pattern in the presence of mental illness. With specific reference to learning disabilities, there appears to be a lack of clear future plans in place; where plans do exist, key person and financial plans are the most common types, followed by residential plans. A number of factors are seen to influence futures planning within learning disability, such as: a lack of information and advice, difficult relationships between service providers and families, inter-family conflict and learning disabled people themselves. Additionally, issues of finance, available resources, personal coping styles, gender, parental expectation and type of disability are seen to have an impact. A higher expectation of future care giving to adult siblings has been associated with gender and quality of the relationship with the disabled person; however additional factors, for example, being the only other sibling in the family and a high level of parental ability to provide support, have also been found to enhance sibling expectations of future care giving.

It is acknowledged at a national and an international level that futures’ planning within the field of learning disability is a difficult and sensitive area within which to effect change. Such challenges support the aim of this thesis, which is to explore sibling wishes and preferences regarding a future care role for a learning disabled person, as it is siblings who are most likely to take on a future care role due in part to family role and expectation, but also in light of the current rationalisation of services. Only by exploring siblings’ wishes and listening to their voice can services provide appropriate support that will meet the needs of families and learning disabled people themselves, which leads on to the final theme of this literature review.

2.6 Key theme four: Adult siblings of people who have a disability - future needs