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 home - choices about where to live

Leaving the family home is another choice that some young people with learning difficulties may wish to make at transition. Some young people will leave home to enter residential further education (college, University, out-of-area placement at another school or specialist college). Other young people may simply feel the need to 'leave home' and get their own place like others of their non-disabled peers. However leaving the family home and getting a place of one's own is a transition that is fast becoming difficult to achieve for all young people and often needs a lot of parental support (Morrow and Richards, 1996). For young people with learning difficulties, leaving home may also be something that happens several times, with varying degrees of success and with young people returning to the family home when housing options break down.

Young people with learning difficulties wishing to leave home will need to consider whether to live alone, or with other people. They will also need to decide where they want to live - with another family (family placement or adult fostering), in a small group home, in larger residential accommodation, in sheltered housing or a living support network, or in their own house that they are renting or buying themselves (King, 2000). Services should also help young people and their families to consider what level of support they are likely to need at home, in the morning, during the day, in the evening, and overnight and how this support will be provided (King, 2000).

Despite the seeming promise of housing choices at transition, the reality is that the vast majority of young people continue to live at home with their family. Families are often very happy for their son or daughter to continue living in the family home, but if this is the case, then it is important for carers' needs to be considered, particularly in terms of access to short breaks services and the entitlement to a carer's assessment (Valuing People Support Team, 2003). Three-fifths of the young people who had left school and were involved in Heslop et al's (2002) research still lived at home. For those young people who had left home, few options existed beyond local authority-run residential or group homes. Of the 272 parents responding to Heslop et al's questionnaire, only one mother reported that her son had found his own flat and was receiving 24-hour support to live independently. The other respondents described living arrangements as being at home, in residential care or at residential college. Similarly, Smyth and McConkey (2003) found that the majority of those young people with learning difficulties involved in their Northern Irish study were continuing to live with the family albeit for different reasons. Interestingly, however, there was a strong parental emphasis on fostering the young person's independence. Only a minority of families envisaged that their son or daughter would move into a residential care setting.

Morris (2002) points out that young disabled people wanting to move into their own home face huge barriers: shortage of suitable housing, segregated housing, difficulties bringing housing and support together, and a failure of housing and social services to work together. The only option is often to move into particular residential accommodation, a decision which is all too often determined by vacancies rather than young people's choices about where to live and who with. For young disabled people with high support needs, there is an almost inevitable assumption that they will move into a residential or nursing home and that this is rarely seen as one step in the transition to adulthood - the assumption is that they will be there for the rest of their lives. (Morris, 2002).

Heslop et al's (2002) research adds that for young people with learning difficulties, the likelihood that they will be able to move into appropriate accommodation of their own choosing, with the right level of support, largely depends on statutory and voluntary sector input. In their survey, only 11% of families and young people had received information about housing options at transition. Parents described a process that was haphazard and uncertain and a complete lack of information about this topic:

'This sounds a bit bizarre really, but, I mean. we have no idea of what the process is for him to go into his own form of residence, whether it was sheltered accommodation or in somewhere [residential]. We haven't got a clue, have we, how that works. no idea!' (Parent, quoted in Heslop et al, 2002).

Most parents said that leaving home was not a topic covered by school and that it had been left to them. Indeed, housing transition seemed to be largely driven by parents themselves, involving a huge amount of energy and stress. Understandably, many felt that it was too sensitive a subject for them, as parents, to tackle with their son or daughter:

'I think she might feel she is being chucked out sort of thing.I want somebody, an adviser, to go at it gently and give her the idea to think about.' (Parent, quoted in Heslop et al, 2002).

For young people with learning difficulties and their parents, leaving home can feel both very exciting and very worrying (Cowen, 2001). There is an important need for continuous emotional and practical support, as well as for clear information about the sources and accessibility of housing, the support available for seeking benefits and the management of budgets (Barnardo's, undated).