Chapter 1. Introduction and background to the research

One of the challenges for social care in Scotland is the increasing number of young people with complex disabilities and high support needs who are making the transition from children’s to adult services (Social Work Inspection Agency, 2010). Transitions are nationally recognised as being problematic for agencies and frequently lead to poor outcomes for disabled young people and their families (Scottish Government, 2011).

Self-directed Support (SDS) is seen as the means by which individuals and families can have informed choice and greater control about the way support is provided to them. The Social Care (Self-directed Support) (Scotland) Act 2013 passed by the Scottish Parliament, and likely to be brought into force sometime in 2014, places a duty on local authorities to have regard to five general principles: involvement, informed choice, collaboration, respect, and participation in the community to promote increased personalisation in meeting the social care needs of adults and children. The Act seeks to ensure that adults and children are given more choice and control over how their social care needs are met, and those individuals and their carers will require information and advice to make informed choices about their care (Payne, 2012).

Choice plays an important role in a person’s quality of life (Smyth & Bell, 2006). However, people with learning disabilities frequently report a lack of choice and control regarding many decisions, including not being given a choice in who provides formal social care support (Bond & Hurst, 2009). Disabled young people with cognitive and communication difficulties face additional challenges to meaningful engagement in decision-making (Murphy & Oliver, 2012). There is a gap in the literature regarding how informed choice is realised in the context of self-directed support for disabled young people in transition.

The dissertation will explore the principle of informed choice in relation to disabled young people in the transition between school and adult services requiring ongoing formal support to meet their social care needs. This research has the potential to benefit policy-makers, managers and practitioners from across health and social care by increasing the understanding of the facilitators and barriers to informed choice. The timing of this research is particularly pertinent as the Scottish Parliament recently passed the Social Care (Self-directed Support) (Scotland) Act 2013, and local authorities and others are preparing for it being in force sometime in 2014.

Transitions for young disabled people and their family carers

Transition from child to adult services is internationally recognised as being problematic, frequently due to a lack of co-ordination between adult and child services (Cheseldine, 2010; Mansell, 2010). Where children’s and adult services do not work collaboratively, at transitions young people and carers have high needs for information (Allen et al, 2012). Parents are said to find transitions difficult and stressful (MacIntyre, 2009).

There are concerns about the lack of involvement of young people in the transitions planning process. It is often assumed that because of communication difficulties and impaired intellectual capacity, the views of people with learning disability are either irrelevant or inadequate (Smart, 2004). This can lead to children’s and young people’s issues being identified and resolved by parents and professionals (Davis, 2011). In the absence of the client voice, the views of professionals and family carers can determine the transition agenda (Kaehne & Beyer, 2009).

While the views of parents and other family carers are often accepted uncritically as being a proxy for the voice of the young disabled person, this is a problematic area. For many the term ‘carer’ (when referring to parents) is ineffective in that it can be seen to depersonalise the relationship between parent and child and turn a normal human experience into a quasi-professional role that contains an implication of burden (Molyneaux et al, 2011).

Issues of empowerment, rights and responsibilities for disabled young people at transition have received little attention in the published literature (Tarleton & Ward, 2005). However, a qualitative study involving six young people with learning disabilities which explored the perspectives of this group on their transition to adulthood, focusing on the process of negotiating autonomy within the family, found some evidence that those young people who were supported to take on valued roles and responsibilities had an improved experience of transition (Mill et al, 2009).

While some research studies focus on young people with specific disabilities (e.g. learning disability or specific health conditions) this study will include all young people who have a disability which necessitates them requiring ongoing formal social care supports.

Self-directed Support (SDS) in Scotland

SDS is at the centre of the Scottish Government’s agenda to promote personalised services. The Bill for the Social Care (Self-directed Support) (Scotland) Act 2013 was passed by the Scottish Parliament in November 2012 and received Royal Assent in January 2013. It is expected that Scottish ministers will bring the Act into force sometime in 2014.

Internationally self-directed support and personalisation are seen to be the basis of a reconfigured relationship between the individual and the state which draws on a view of individual and community strengths working in partnership with local agencies (Glasby, Duffy & Needham, 2011). Scotland has decided that SDS should be less focused around the individual budget and more about the relationship between the individual and the state, as was explained in the author’s recent interview with a Scottish Government SDS policy maker:

We wanted our policy to be primarily about values and principles that underpin self-directed support. […] it is about social care returning to what it should be about for professionals […] and the individual having more control and say.

Individuals assessed as having social care and support needs can choose to directly manage their individual budget, or they can decide to take less direct control by asking the local authority to arrange support on their behalf. The Act provides four options for self-directed support for individuals who are assessed as needing care or support:

  1. The local authority makes a direct payment to the supported person in order that the person can then use that payment to arrange their support.
  2. The supported person chooses their support and the local authority makes arrangements for the support on behalf of the supported person.
  3.  The local authority selects the appropriate support and makes arrangements for its provision.
  4. A mix of options 1, 2 and 3 for specific aspects of a person’s support.

There is no universally accepted definition of self-directed support and the term can be seen to be evolving to reflect changing emphases in policy. The difficulty in agreeing a clear definition for SDS is evident from a review of SDS commissioned by the Scottish Government which states that the many descriptions are unclear and use terms such as choice and control interchangeably (Manthorpe et al, 2011).

The Scottish SDS legislation and associated guidance provides five principles that will guide everyone when they use the new law: involvement, informed choice, collaboration, dignity, and community participation. In terms of the principle of informed choice, there is a duty on local authorities to provide a person with assistance to make an informed choice when choosing an option for self-directed support.

Informed choice

A person must be provided with any assistance that is reasonably required to enable the person: a) to express any views the person may have about the options for self-directed support, and; b) to make an informed choice when choosing an option for self-directed support. (Payne, 2012, p. 19)

Disabled young people confront not only the everyday challenges of growing up and moving from school to further education and employment, but also the challenges of moving from children’s to adult social care and health services. Giving people choice is seen as the key to personalisation (Jenkins & Hay, 2010). People with learning disabilities in nine EU member states said that having choice and control in their lives was essential to their sense of personal well-being and belief that they had a future (European Agency for Fundamental Rights, 2012). Research on the experiences of disabled young people who are leaving school has focused primarily on the parent-professional interface and their experiences of statutory processes. Little is known about the decision-making processes that take place within families when a disabled young person is in transition (Maddison & Beresford, 2012).

The assumption that adults are rational beings provides the intellectual foundation for most public policies in Western democracies, promoting the individual’s right to choose, unless the choice harms others. However, behavioural psychology research has found that that choice involves both rationality and intuition (Beresford & Sloper, 2008). Rationality is based on considering the available information, while intuition is framed by past experiences and associative memory. Kahneman (2011) highlights that we like to think our decisions are based on rationality, but our intuition is often a more powerful determinant of choice. In addition, choice should not be considered as a discrete event as it involves a process of locating the issue within the individual’s social context, collecting relevant information leading to a decision, and reflection and review following the choice being made.

Choice has emerged as a key concept for the reform of public services and is seen as a cornerstone of SDS in Scotland. Having choice is seen as important in improving health and promoting independence (Baxter et al, 2011). Choice is also regarded as a lever for changing the power base of relationships between individuals and care services (Stevens et al, 2011). However, choice is not an unproblematic concept and can involve conflicts in three areas: conflicts over inequalities; conflicts over power; and conflicts over the relationship between public and private (Clarke et al, 2007). To summarise Clarke et al (2007): choice mechanisms in public services can firstly replicate social and economic inequalities where those with more social capital (e.g. education, wealth, social networks, etc.) can more effectively achieve desired outcomes. Secondly, there is an antagonism between choice and power, in that professionals retain power over eligibility criteria and identifying how needs can be legitimately met. Thirdly, there can be conflict over the relationship between public and private, where services have to deal with multiple and competing demands from individual ‘consumers’ within finite resources.

Information of good quality, given at the right time, in the right format is seen as a precondition for choice (Baxter & Glendinning, 2011). Informational continuity was found to contribute to smooth transition from child to adult services for young people with diabetes (Allen et al, 2012). Professionals have a role in providing relevant information to service users by targeting information and developing personalised information systems (Baxter et al, 2008). However, research into health screening programmes concluded that the evidence that written information promotes informed choice is unconvincing, and that the definition and measurement of informed choice is problematic (Fox, 2006). Services may not be providing information in a format that is keeping pace with trends in the way that people access information. However, the use of the internet for health and care services may not be common-place; for example, despite the increasing proportion of the population that use the internet, the use of online information for healthcare choices is relatively low (Radha et al, 2012).

Research commissioned by the Social Care Institute for Excellence in England found that for young people and their families at transition there was little information made available to support young people to be in charge of their lives (Tarleton & Ward, 2005). There is a similar lack of accessible information in Scotland for disabled young people and their families about supportive services during transition (Scottish Transitions Forum, 2013). There is also limited evidence of the involvement of disabled young people in decision-making regarding their social care (Franklin & Sloper, 2006). A qualitative study of disabled young people with degenerative conditions found that the processes of choice-making are diverse and that choices are often shared with other people, especially parents and peers (Mitchell, 2011).

Choice and control are seen to increase the ability for people to make positive changes in their lives and to achieve desired outcomes (Glasby & Littlechild, 2009). However, choice can be a problematic concept, with the process of making choices sometimes causing negative emotions such as fear, worry and stress (Baxter, Rabiee & Glendinning, 2011). Many choices take the form of a choice between retaining the status quo and accepting an alternative to it which has potential advantages and disadvantages. Kahneman (2011) has demonstrated that where there is a possibility of loss the decision maker will be biased in retaining the status quo.

For disabled young people in transition retaining the status quo is not an option as school, health and social services set age criteria which are not negotiable, but it is possible that in times of change parents will prefer the option closest to the existing status quo. A study of the decision-making preferences of adolescents with chronic illnesses in medical decision making found that the largest proportion of adolescents preferred a passive approach compared to active or shared decision-making (Knopf et al, 2008). It may be that different preferences are expressed when it comes to decisions about social care services. A study of advocacy for disabled children and young people found that they have a view, can be assisted to express their views, and can contribute to complex decision-making processes if supported through advocacy (Franklin & Knight, 2011).

The review of the literature on SDS, informed choice and transitions for disabled young people illustrates the complexity of understanding how emerging policy initiatives are enacted by local agencies and the impact on the people the policy is designed to help. Existing research findings and acknowledgements of gaps in our knowledge have shaped the design of this exploratory study by addressing the research questions outlined in the following section.