The Road Ahead – Literature review

3. Changes at transition

Transition to adulthood is a time of change and includes coping with:

Legal, social and physical changes

Becoming an adult involves a shift in legal status. For young people with learning difficulties, legal changes will involve the right to vote and the legal right to make their own decisions, with support if necessary. Legally, adulthood occurs when a young person reaches the age of 18, although in reality many young people will have taken steps towards adulthood long before this.

Decision making is an important part of both becoming an adult and the transition process itself. But young people with learning difficulties often get very little practice in making choices until they are presented with what can seem like an overwhelming array of decisions to make about the future (Thoma et al, 2001). A recent action research project in England (Carnaby et al, 2003) evaluated the involvement of students with learning difficulties in their transition review meetings during their final year of special school. The researchers found that many students were excluded from meaningful discussion, mainly due to a lack practice and preparation. The school developed more individualised ways of working using person-centred techniques to enhance meaning, and staff spent time and effort with the young person and their family over several sessions to ensure that the transition review meeting was not the first time for discussion and decision making about the student's future.

As well as opportunities for practice in decision making, young people and families also need information about support to make choices. There is scant published evidence of the provision of independent advocates and peer-support schemes for young people with learning difficulties. One exception is the 'Trans-active Project' (Pennington, 2001) which set up a buddying scheme pairing young people with learning difficulties from special schools with their mainstream peers. The project wanted young people with learning difficulties to be able to make more informed choices about their future through sharing experiences with non-disabled youngsters. The project provided support for the initial bonding process via a residential weekend. Teenagers then worked together on different topics relating to transition, such as advocacy, education, living skills, working, leisure and friendship. By using photos, video clips and other multi-media techniques each child was able to create a CD Rom (or 'transition passport') to express their views and spell out their own choices. Interestingly, the project found that mixing with non-disabled peers in this way broadened the horizons of young people with learning difficulties and encouraged them to aim 'higher' in terms of their future goals than they would otherwise have done.

The new Connexions service also offers opportunities for practice and support in decision making through the provision of a Personal Adviser for all young people with learning difficulties. In their study of the role of Connexions in supporting young people with disabilities and/or learning difficulties, Rowland-Crosby et al (2003a) found that young people appreciated the preparatory meetings and individual planning work that their Personal Adviser offered. In a separate study of the Personal Adviser role in two special schools and an FE college in Lewisham (England), students said that they liked having an independent person with whom they could discuss their plans and ambitions. Families also liked having someone who had no other agenda and would try to understand their needs, even if they had no immediate way of meeting them (Grove and Giraud-Saunders, 2003). A fuller discussion of the role of Connexions in supporting young people at transition follows in section four.

Another element of legal and social change at transition relates to benefits and financial matters. As Heslop et al (2002) have noted, financial resources are a key factor in young people's participation in activities that are part of becoming an independent adult. At transition, some of the benefits that were previously paid to a parent, or carer will start to be paid directly to the young person with learning difficulties. At the age of 16, young disabled people can also claim new benefits relating to their adult status. A consistent theme from the literature is that young people with learning difficulties and families need more information about benefits and how these change at transition (Ward et al, 2003d; Edinburgh Youth Social Inclusion Partnership, 2001; O'Sullivan, 2001). Very few of the parents involved in Heslop et al's (2002) study had received good, accurate information from professionals about claiming benefits at transition. Their information was gleaned in an ad-hoc way from a variety of sources - information days at school, benefits promotional events, organisations for disabled people or carers, or just by chance.

Managing and handling money can also be a great source of anxiety to youngsters, and many young people with learning difficulties have reported worries and difficulties in this area (Ward et al, 2003d). Access to money and learning how to budget appropriately are important aspects of the transition to adulthood. Yet few of the young people involved in Heslop et al's (2002) study managed their own money, or had received support to do so.

The Life Options Project in Wales is supporting families and young people with learning difficulties at transition (Life Options, undated). One of the key areas covered focuses on support to 'control your own money and benefits'. There is a particular emphasis on exploring the use of direct payments and the Independent Living Fund to enable financial independence and support a wider range of options at transition. For young disabled people, it is well established that direct payments, the Independent Living Fund and Disability Living Allowance are key benefits for supporting transition, leaving home and enabling autonomous adulthood (Hendey and Pascall, 2001). The role of direct payments in transition planning is relatively unexplored, but has great potential given that the Carers and Disabled Children Act 2000 extended direct payments to disabled 16 and 17 year olds (Hudson, 2003). However, it appears that some social services departments are not encouraging the discussion of direct payments with young people as part of their transition from children's services to adult services (Rowland-Crosby et al, 2003a) and take-up of direct payments by young people with learning difficulties is very low (Hudson, 2003). Russell (2003) suggests that it is vital to develop the role of the Independent Living Fund, the Access to Work Scheme and direct payments for younger disabled people to encourage flexible and appropriate personal support and enhanced access to education, training and employment.

In tandem with the move towards legal independence (in terms of decision making and financial matters) comes an emphasis on social independence. This involves developing independent adult friendships and relationships and taking more responsibility for one's health and personal safety.

Safety and risk is a major concern for families and young people with learning difficulties at transition (Ward et al, 2003d; Heslop et al, 2002). At transition parents may face the dilemma of wanting to create opportunities for independence for the young adult and wanting to assure that health and safety needs are met. They understand the importance of independence and letting go but they often do not know whether their child can do an activity or whether or not it is safe to try (Thorin et al, 1996). Parents may expect adult services to create the same sort of 'safe' environment previously provided by school and may favour 'special' clubs, segregated day services and facilities with high levels of supervision and transport available door-to-door (McConkey and Smyth, 2003).

The literature points to a strong need for more information and support for parents in coping with issues of safety and risk at transition (Ward et al, 2003d), as it is one of the key areas that can inhibit young people's moves towards independence (Heslop et al, 2002). The only study found by this review which focused entirely on the topic of safety and risk as it relates to young people with learning difficulties at transition is the work of McConkey and Smyth (2003). This study explored and compared parents' perceptions of risk with the perceptions of their teenage sons or daughters who had just left school. Parental reports stressed the amount of care and supervision required by the young people. They talked about the need to attend to the young person's personal care needs (washing, dressing, feeding, shaving), household tasks (cooking, laundry), the need for constant supervision, the need to be escorted outside, help with travel, giving medication, managing money, giving prompts and reminders, reading and writing, telling the time. Parents viewed their youngsters as vulnerable to various hazards commonly undertaken by non-disabled teenagers such as crossing the road, staying in the house alone, using household appliances, using public transport, going out with friends with learning difficulties, and going to town on their own. Less than half (45%) of the parents interviewed were prepared to risk their son or daughter learning to do any of these tasks, and 44% rated their youngster as being unable to do any of the tasks. In contrast, only 22% of young people rated themselves as being unable to do any of the tasks. Parents had a particular fear of sexual abuse against their son or daughter, although for young people, the bigger risk - going by their own reports - was verbal abuse and bullying from peers (McConkey and Smyth, 2003). The authors suggest that this sort of danger-avoidance strategy restricts young people's freedom of choice and autonomy and may lead to loneliness and inactivity. The alternative is what they have termed a 'shared risk' strategy where parents, young people and professionals explore their mutual perceptions of hazards and work together to reduce risks.

The model of parental risk-taking posited by McConkey and Smyth is interesting, novel and potentially very significant as a tool for supporting families and young people with learning difficulties to cope with risk and uncertainty during the transition to adulthood. It involves professionals, families and young people working actively together to identify the key elements in managing the risks inherent in moving towards adulthood and independence. It also highlights the need to promote and confirm the competencies of young people through continuing education and the need to practise these in real-life settings rather than in classrooms. Implementing the model requires close partnership between young people, parents and professionals, parent-to-parent contact (in terms of sharing experiences and learning from each other), and parental involvement in life-skills training. It also requires greater emphasis on self-advocacy, and advocacy, for young people, to enable them to demonstrate their competence, argue for positive consequences, propose conditions that are acceptable to them and become active collaborators with others in assessing risks (McConkey and Smyth, 2003).

Taking increased responsibility for one's health is another aspect of the changing nature of relationships between young people and their families at transition. Any move into independent living away from the family home will involve changes in routine, exercise and diet. Young people with learning difficulties need information about how to keep themselves well and healthy by eating a balanced diet, doing exercise and feeling good about themselves. They will also need information about getting regular health checks (Pearson et al, undated). By 2005 all young people with learning difficulties moving from children's to adult services should be offered a Health Action Plan to help them be more actively involved in their own health and well-being (Department of Health, 2001). Families and young people need information about what this means for them, and how the health action planning process will be implemented and managed (Ward et al, 2003c).

Another aspect of life that will almost certainly change in the move towards adulthood is the nature of friendships and relationships. It is inevitable that friendships will come and go as young people move on from school or college and into other learning or work-based environments (Heslop et al, 2002).

The issue of friendship was one that was most prominent in interviews with young people with learning difficulties at transition carried out by Heslop et al (2002). Young people were concerned both about the difficulty of leaving friends behind when they moved on from school or college, and about the issue of boyfriend/girlfriend relationships. Many other studies have identified that friendships and relationships are two of the most important aspects of young people's lives at transition (Morris, 2001, 2002; Pennington, 2001; Smyth and McConkey, 2003; Williams, 2003; Barnardo's, undated).

Several studies have shown that young people with learning difficulties face numerous barriers to an independent social life, and to sustaining friendships (Edinburgh Youth Social Inclusion Partnership, 2001; Morris, 2002). Morris (2002) suggests that some of these barriers - lack of one-to-one support, independent access to transport and communication technology, high degree of adult surveillance, lack of access to a peer-group - should and could be the focus for input during transition planning. And yet discussions about friendships are rarely reflected in assessments, reviews and transition planning (Morris, 2002; Heslop et al, 2002). The young people involved in the 'My Voice, My Choice' consultation had a range of ideas for promoting and sustaining friendships including the following:

Sexuality and sexual relationships with boyfriends/girlfriends also feature as important issues in transition to adulthood for all young people, but may be overlooked or not viewed as important by professionals and families of young people with learning difficulties (Morris, 2002). Sex education should be covered as part of the national curriculum for all young people with learning difficulties. However, many young people will need much more input than this, particularly in terms of handling relationships and the emotional complexity that is involved in developing and sustaining adult sexual relationships. It is also important to include issues on same sex relationships as part of sex and relationship education. Young disabled lesbian, gay and bisexual people need support and information relevant to their own experience (Stewart and Ray, 2001).

Half of the young people interviewed by Heslop et al (2002) had a boyfriend or girlfriend and many of them mentioned the difficulties of negotiating roles and boundaries within this friendship. Parents too talked about the difficulties inherent in supporting their son or daughter's developing relationships. Feelings and views were mixed - some parents did not believe that a sexual relationship was possible for their youngster whilst others were more relaxed and accepted that it was happening. However, almost all parents involved in Heslop et al's (2002) study described feeling 'at a loss' as to where to go for advice or support.

This finding is mirrored by the work of Clegg et al (2001) who found that parents of young people with learning difficulties reported being unable to obtain advice about issues relating to sexuality, body changes and maturation during the transition to adulthood. There is a clear need for more support and information to enable parents to have the opportunity to explore their thoughts and feelings about their son or daughter's developing sexuality and adult relationships.