The Road Ahead – Literature review

4. Choices at transition

The transition to adulthood involves making active choices about the future, as well as responding to a number of changes to individual and family life. These choices fall into two main areas:

Leaving school - choices about how to spend one's time

The vast majority of young people with learning difficulties will be in full-time education until the age of 16 or 18/19. At Year 11 and again at Year 13, young people will be presented with the choice of continuing their education (either by staying on at school until Year 13, or by leaving school and continuing FE elsewhere), entering employment, or engaging in other forms of daytime activity.

Leaving school to continue education may involve considering choices about whether to go to another school or sixth form, to go a local college or to go away to college. Leaving school can be a very traumatic event for young people with learning difficulties. Half of the young people interviewed for Heslop et al's (2002) study said that they had been sad or upset to leave school. Others, however, expressed a wish to move on and do others things. Heslop et al (2002) found that the following factors made the transition from school easier for young people and their families:

This study also found that young people liked seeing videos or brochures about possible further education options and choosing which to visit. Information days at school or college and discussing options with their teachers, friends or families were also important (Ward et al, 2003a).

Further education appears to be a very popular progression route for young people with learning difficulties. However, organising funding for further education, particularly for placements at residential colleges, and making appeals when college choices are turned down are noted in the literature as particularly difficult issues for families at transition (Heslop et al, 2002).

Heslop et al (2002) found that 78% of the young people with learning difficulties in their study who were in their first placement after school were in further education. There seemed to be an expectation for young people and their parents that college or further education was the 'next step'. In Mitchell's study (1999) of special school leavers, 94% remained in some form of education full or part-time time after leaving school. Similarly, in another English study of school-based transition programmes for young people with moderate learning difficulties, the majority of students leaving special schools were attending college, with training or work-based learning being the second most common destination (Collaborative Group for Learning Disability in the North West, undated). Nevertheless, it also seems that for students with high individual support needs, there are few opportunities for participation in further education (Florian et al, 2000b). This finding supports an earlier study by the same authors (Florian et al, 2000a) that confirmed the widely held view that students with high individual support needs have few opportunities to participate in community life as adults. This 1999 survey found that of the 505 young people represented aged over 19, 39% remained in school, 24% moved onto day centres, 2% stayed at home, and only 19% went onto part-time or full-time courses in residential or further education colleges (the remainder did a combination of activities, or results were missing).

Rowland-Crosby et al (2002) suggest that colleges (or on-site sixth forms) are often seen as the only progression route for many young people with learning difficulties and/or disabilities. Their research also found that learning choices were often restricted to courses based around independence or life skills and that there was little parity between provision for non-disabled young people and that for disabled young people. Morris (2002) adds that many further education placements for young people with learning difficulties are more concerned with meeting care needs than educational needs. Indeed, some researchers have suggested that in the absence of information about other choices, going to college can be seen as a way of putting off a 'crisis' (Edinburgh Youth Social Inclusion Partnership, 2001).

Heslop et al's (2002) research found that most young people with learning difficulties quickly settled into college and enjoyed further education. Young people talked about the fact that going to college makes them feel 'grown up'. For families and young people, going away to a residential college may be seen as an important step on the road to adulthood and may indeed offer a 'surrogate' mode of transition (Mitchell, 1999). It involves moving away and acquiring more independence, the loosening of familial bonds, letting go and limited risk taking, social independence and the development of an adult social life without family input, the development of educational or vocational skills, particularly life-skills and practical preparation for a more independent future (Mitchell, 1999). Heslop et al (2002) suggest that time at college can give young people and parents a chance to take stock and relax in the knowledge that the next change will not happen for a few more years yet.

Interestingly, despite a focus on the importance of going away to college as a means of encouraging independence, the young people involved in Rowland-Crosby et al's (2003b) research said that they would rather go to a local college. These researchers make the point that there is a rising number of out-of-area post-16 Learning and Skills Council funded placements. Although young people with learning difficulties may be less likely to be offered an out-of-area placement than other young disabled people, such placements should only arise if there is no suitable provision at local colleges. They go on to suggest that using out-of-area placements may mean that local gaps in provision are not recorded so the situation becomes self-perpetuating (Rowland-Crosby et al, 2003b).

The issue of 'what to do?' after college or further education will follow an all too brief period of independence for most young people, as after residential college the only real option may be to return to the family home (Mitchell, 1999). Sinson's (1995) study of ex-residential college students found that families' concerns post-college focused on their youngsters' future accommodation needs, community reintegration, and danger of social isolation from local peers. For those attending local colleges, post-education outcomes are also an issue and O'Sullivan (2001) reminds us that young people with learning difficulties need planning for what happens when they leave college.

Finding employment is another choice that young people with learning difficulties should be able to make at transition, either after leaving school or after leaving further education. Young people should be able to consider options along a continuum which includes work experience, supported employment, sheltered workshops or social firms, voluntary work and ordinary, paid work.

Having a job is central to one's self-esteem and self-confidence and can positively affect the way one is perceived by others (Heslop et al, 2002). Indeed Hendey and Pascall (2001) found that for the young disabled people involved in their research on transition, employment was central to their sense of themselves as adults, and there was a widespread feeling that paid work was the best route away from poverty and social exclusion and into social relationships and citizenship. Work and employment is highly valued by young disabled people and their families (Mitchell, 1999) and parents in particular value paid work and wages for their youngsters (McNair and Rusch, 1991). The financial independence that paid work brings is a definite aspiration for many young disabled people and people with learning difficulties (Barnardo's, undated).

However, research has shown that many people with learning difficulties fail to progress from education and training to any form of employment, paid, supported or voluntary (Beyer et al, 1996). Jacobsen (2003) suggests that in reality, individuals often remain at college for many years, sometimes repeating courses or returning to the day centre from which they were originally referred, only to come back to college a few years later. The transition to work from training or employment can be particularly hard for people with learning difficulties. Jacobsen (2003) examined vocational courses or training that included support for the transition to work. Key factors for the successful development of transition to work provision were:

Work experience can be a good way to get a feel for the world of work. But recent research has found that the provision of work experience, especially that available to young people with learning difficulties in Years 10, 11 and 12, is very different across the UK (Rowland-Crosby et al, 2002). The Disabled Children's component of the National Service Framework for Children in Wales has as one of its key actions that young people with learning difficulties should have access to a range of work experience opportunities in community settings at transition (National Assembly for Wales, 2004).

Supported employment is also a chosen option for many people with learning difficulties. But provision of supported employment varies and projects are often short-term and fragile. Schools and colleges often lack information about supported employment options and there are low levels of awareness about the Access to Work schemes amongst employers and young disabled people (Morris, 2002). In their study of the role of Connexions Personal Advisers (PAs), Grove and Giraud-Saunders (2003) found that despite efforts of the project team to raise awareness of the profile of work and employment as a potential option for young people with learning difficulties, this issue hardly featured in the role of the PAs they interviewed. They suggest that work should become much more central to the support offered by Education and Connexions staff. This must be matched by close working between PAs and careers advisers and include development links with local supported employment agencies where they exist (Grove and Giraud-Saunders, 2003).

For young people with learning difficulties, finding paid employment in ordinary jobs is rare but possible. Of the 109 young school leavers with learning difficulties included in Heslop et al's (2002) research, four had experience of paid work, with three of these currently in paid employment (supermarket, catering, hairdressing). This finding is consistent with research which shows that although people with learning difficulties have been saying for years that they want proper jobs, very few are actually employed (Grove and Giraud-Saunders, 2003). A comparative European study identified some core skills needed by young people with learning difficulties to access paid employment. It concluded that for young people throughout Europe there are shared employability skills of punctuality, reliability, flexibility and a capacity to work in a team. The findings echoed previous work about the need for effective training to get young people into work, and on-going support to enable them to sustain employment once they had got a job (McAnespie, et al, 2000).

O'Brien (undated; quoted in Morris, 2001) believes that a conceptual shift is needed in order to expand employment opportunities for young people with learning difficulties and involves moving the focus from the person alone to the person plus a skilled job coach. Potentially this would increase the number and variety of jobs available. The emphasis in this approach is very much on support within and outside the (ordinary) workplace. This concurs with the views of young people themselves (e.g. Barnardo's, undated) who state that helpful things about having and keeping a job include:

If further education or work is not acceptable or possible, some young people with learning difficulties may choose to spend their time engaged in other forms of daytime activity. The most likely option will be some form of day service package, provided by the young person's local authority and specified in their Care Plan. In many areas this is likely to include attendance at a day activity centre for people with learning difficulties. Day centres were used by about a quarter of the young people in Heslop et al's (2002) study. All but one of the young people had moved to day activity centres after a period at college. Some of these young people described feelings of boredom and said that there were skills that they would have liked to develop but were not offered the chance to by their day centre (e.g. first aid, using a computer). Two young people explained that transition to day services had been helped by visiting a variety of places, allowing plenty of time to settle in, and trying a number of activities before making the final choice.

More personalised options for day activities are growing, and the Department of Health has directed local authorities to modernise day services by 2006 with the aim of ensuring that resources are focused on providing new opportunities for people with learning difficulties to lead full and purposeful lives (Department of Health, 2001). This is also something that most parents want for their youngsters. Mitchell's (1999) study found that parents wanted their school-leaver son or daughter's future activities to be both 'purposeful' and 'meaningful'.

The provision of person-centred planning and use of direct payments is central to any move away from fixed daytime programmes towards individualised action plans designed to establish the activities that an individual wishes to engage in, and the support needed for these (Hudson, 2003). Person centred planning discovers and acts on what is important to a person and design and delivery of services is based upon a knowledge and understanding of what is important to a person. A fuller discussion of the role that person centred planning can play at transition follows in section four.

Choices about how to spend one's time involve thinking about leisure and transport options. Leisure options are often not considered during planning for transition to adulthood, yet this is an important area of focus for young people with learning difficulties (Goupil et al, 2002). Young people will need information about what leisure options are available to them as young adults, how they can access these, and what support is available. Leisure activities (such as sport, evening classes, and other forms of socialising) are an excellent way to meet and make friends. Social exclusion is big issue for all young disabled people. Morris's (2001) research found that this meant having no friends, finding it difficult to do the kinds of things that non-disabled young people do (such as shopping, gong to the cinema, clubbing), feeling unsafe, being harassed and bullied and not having control over spending money. Many young people with learning difficulties find it difficult to spend time with friends away from their families. For example, although the young people in this Northern Irish study were actively involved in leisure activities outside of the home, these were done mostly in the company of family members (Smyth and McConkey, 2003).

Access to and support to use transport can also make the difference between a range of options and restricted choice. Despite this, Ward et al (2003d) found that post-school transport arrangements were rarely covered in transition planning. O'Sullivan (2001) found that free and accessible transport was felt to be very important in enabling young people with learning difficulties and young disabled people to participate in leisure activities and also in part-time work. Rowland-Crosby et al (2002) found that poor transport links and poor access to transport had a negative impact on young people's choices and aspirations at transition. In rural areas, a lack of public transport and the withdrawal of free transport (by the local authority) at age 19 curtailed many young people's further education choices and restricted their choice of future employment (Rowland-Crosby et al, 2002). The notion of independent travel can be a source of anxiety for young people with learning difficulties and parents (Ward et al, 2003d). Parents may have concerns about young people's safety when travelling independently, and young people can be worried about the unpredictability of public transport.