The Road Ahead – Literature review

6. Transition and the family

Families of young people with learning difficulties play a major role at transition. The literature highlights the essential nature of family involvement and the difference it makes to effective transition. Yet this is often overlooked by professionals, to the extent that family involvement and families' views and input are frequently absent from the transition planning process (Morris, 2002).

Blacher (2001) believes that active family involvement in accessing services appears to be critical to successful transition for young adults with learning difficulties. Sibling involvement is also likely to be a critical factor both in transition success and parental well-being. Similarly, Bjarnason's (2002) exploration of the perspectives and experiences of 36 young disabled adults (16-24 years old) in Iceland found that the type and nature of early support for parents of disabled children is critical for young adults approaching adulthood in regular society or expecting to remain in the limbo of 'eternal youth' within segregated settings. And McNair and Rusch (1991) go as far as to state that in the absence of special funding or special projects, the single most important factor in successful transition is the parent. However, little is known about how parents can be involved, and what they perceive their role to be. In this North American study, McNair and Rusch (1991) found that parents were significantly less involved (30%) in transition programmes than they desired (70%). Parents often said that they wanted to be involved in finding job placement and community-living arrangements more often than they had the opportunity to do so. The authors suggest that parents may be a largely untapped resource in this regard, as they are likely to know and to have lived in the local community all their lives.

In England, research (Rowland-Crosby et al, 2002a) has highlighted the necessity of close working relationships and good communication between Connexions staff and parents. Parents kept Connexions PAs informed of issues they needed to be aware of where contact only with the young person was insufficient. This is a finding echoed in research by Heslop et al (2002).

Section one has already discussed some of the factors that make transition to adulthood a different experience for young people with learning difficulties. One of these differences is the recognition that more, not less (as is the norm for non-disabled youngsters) parental involvement may be necessary at transition. Day- -to-day reality may mean a greater need for parental advocacy and oversight when adult services are inadequate, unavailable or unacceptable (Thorin et al, 1996). Hendey and Pascall's research (2001) with 72 disabled people in their 20s and 30s found that parents were seen as the most important resource, and their input was key in the lives of the most independent respondents (those who were living independently and in employment). These parents had a relatively high level of social, economic and cultural resources, encouraged independence with expectations of achievement and were able to negotiate with professionals.

An acknowledgement, by professionals, of the huge role played by families at transition is essential, and should be an intrinsic part of the transition planning process (Morris, 2002). It is also important to recognise that parents may feel some discomfort, and indeed sadness, at the extent of their role in helping to plan their youngster's future, feeling compelled to make important decisions without sufficient information, knowledge, or the urging for independence that comes from non-disabled young people (Clegg et al, 2001).

There is very little research on the impact of transition on parental stress and family well-being for families of young people with learning difficulties. But some studies have highlighted the range of 'coping strategies' that families develop at this difficult time. Ward et al (2003d) found that parents coped by viewing transition as a 'balancing act, using the experiences of other siblings to guide the way, and coping with change as it arose by trial and error. The parents in Mitchell's (1999) study of school leavers recognised the need to be realistic and not to raise expectations for their young person. But they also experienced conflicting emotions - wanting to encourage aspirations, yet also fearing undue disappointment for their son or daughter.

Young people have stressed the importance of their family at transition. The young people with learning difficulties involved in Heslop et al's (2002) research talked about the importance of family contact (through visits, phone, photos, mementoes) when away from home, the encouragement they got from parents and siblings, and their pride in having a sense of a place in the family. Beginning to take on an adult role in the wider family, often in terms of supporting other family members, is something that is important to many young people with learning difficulties/disabilities. Morris (2002) found that the young disabled people she spoke to said how important it was to fulfil expectations and roles within their families, and to be part of family and community celebrations. However, many of these young people experienced major barriers to playing a full role in the wider family unit, and these issues were rarely covered in assessments and reviews (Morris, 2002).

However important the role of the family is at transition, the views and needs of the young person with learning difficulties should still be uppermost. Transition planning should be focused on the young person and their move to adulthood, within a context of family support and involvement where this exists. Rowland-Crosby et al (2002a) point out that young Black and Asian disabled people may have very different views to their parents about what they want to do in the future. Connexions PAs may be in the very sensitive position of having to advocate for the young person and acknowledge the strong feelings of the parent. The authors make a plea for Connexions PAs to strengthen their links with local groups and networks to ensure that the service they offer is appropriate and respectful.

Finally, Morris (2002) reminds us that not all young people with learning difficulties have families and those who have spent a lot of their life living away from home, may not have anyone who will be there to act as advocate, information-seeker, and arbiter. Rabiee (2000) suggests that some care leavers with learning difficulties are being denied the rights and choices available to others. Without proper transition planning, when foster placements, or other care arrangements end at age 19, some young people with learning difficulties are either institutionalised in residential or day care settings, or left to live independently without appropriate support.

Key areas of information need for young people with learning difficulties and their families