The Road Ahead – Main report
7. How do the literature and resources available reflect the information needs identified?
This section discusses the key information needs presented by young people and their parents. These views are supplemented by insights from the supporters who often help young people and parents navigate through the transition process.
The section begins by looking at how the transition process is understood. It then examines each of the key themes from the young people's discussions (plus additional themes from the parents' discussions) in the context of the literature available and indicates where there are appropriate resource materials providing young people and their parents with relevant information in this area. It draws on the review of literature by Ruth Townsley (2004) and the resources review undertaken by Debby Watson (2004) in the summary tables which are presented in Appendix C. The letters and numbers in brackets relate to the location of the resources within these summary tables.
The transition process
The young people's understanding of the transition process (as indicated by the themes below) reflected the common markers of adulthood described in previous work on young people's views of transition (Barnardo's, undated; Choices Advocacy, undated; Heslop et al, 2002; Williams, 2003). These markers include: common goals such as going to college, getting a job, earning money, leaving home and friendships; the young people expected these to happen for them in much the same way as they did for their brothers, sisters and non-disabled peers.
The young people's expectations were high. This apparent lack of realism was a cause for concern for their parents, who experienced the transition process with a mix of emotions including anxiety and fear (Ward et al, 2003; Goupil et al, 2002; Mitchell, 1999). Hanley-Maxwell (1995, in Clegg et al, 2001) recognises that parents often experience high levels of stress at this time. With the exception of one resource for young people from the Foundation for People with Learning Disabilities (N9) and the corresponding resource produced for parents (N22), there was little emphasis on emotional issues within the more general resources available and a notable lack of recognition of, or discussion on, how to cope with disappointment or frustration.
Parents in this study had concerns about their young person's lack of understanding of reality and their own abilities, and about whether their aspirations could be met by services that they knew would have to be fought for or might not be available locally. As Armstrong and Davis (1995) noted, the best laid plans have little chance of realisation if the options and services are not available. The Edinburgh Youth Social Inclusion Partnership (2001) and Ward et al (2003) also highlight the narrow range of options available for young people.
The supporters felt that this issue should be addressed through person centred planning, which would involve looking at the young person's dreams within a context of local provision. The 'Families Leading Planning' pack (N15) is a major resource in this area and gives comprehensive guidance to parents on how to ensure that their child is kept at the heart of the planning process.
As Carnaby et al (2003) note, young people themselves (including those in the project team conducting this study) are often not involved in transition planning. This further inhibits their realistic understanding of the process. Only one young person in the discussion groups had a detailed concept of the transition process, as she was involved in the local Partnership Board. So young people themselves need clear, appropriate information about the transition process - and to be involved in the meetings and process at all stages. Resources such as 'Transplan' (N3) 'Planning My Future' (N11) and 'The Big Picture' (N12 - when completed) and the 'All Change' (N13) pack's accessible guidance for young people go some way to address this situation. The 'Trans-active' website (W7) aims to help young people with learning difficulties to create a multimedia 'passport' about themselves at transition. Young people do, however, need considerable support to be able to do this.
Parents were also confused and disempowered by a lack of understanding of the transition planning process. They were unsure of their role, whether they would be listened to, how the transition process works and who was responsible for what. Supporters confirmed parents' and their own need for detailed information about the transition process and the ways in which the various professionals and agencies were involved in the variety of plans that proliferate in the transition process.
Although the parents in this study were confused, and stressed their own need for information and support in the transition process, parents are seen in the literature as a significant factor in facilitating a successful transition for their son or daughter (McNair and Rusch, 1991). It was also clear from the literature that transition planning, where possible, should be within the context of family support and involvement. Blacher (2001) notes that active family involvement is critical to successful transition. In Hendy and Pascall's study (2001) disabled people in their 20s and 30s said that their parents had been their most important resource at transition; Thorin et al (1996) also recognised the importance of parental oversight and advocacy particularly if services are insufficient or inappropriate.
The literature also confirms parents' confusion about the transition process. It highlights the wide variability in the way the transition process is implemented locally and notes the confusion of multiple plans made for young people by different agencies. These include: the transition plan produced at school, the personal Connexions action plan, an individual learning plan in some areas and, possibly, a care plan (by social services, if using adult services) health action plan or person centred plan. Rowland-Crosby (2003) confirms parents' confusion about the nature of different plans and assessments whilst pointing out that professionals also feel that there is a lot of duplication and extra work. There are, however, a number of resources which are designed to help parents with the transition process (N13, N16, N17, N19, N29, N30, N31, W4, W5, W8, W9 and W10). These vary hugely in format and detail, ranging from factsheets to 246 page packs. The most comprehensive of these is the 'All Change' pack (N13).
Both parents and supporters highlighted the need for a key worker to provide one point of contact and information about the process of transition. The parents in the discussion groups turned to their child's school as the point of information and contact. They frequently conceptualised transition as moving on from school to college and recognised the school's key role in this. Perhaps surprisingly, the resources available to parents do not fully acknowledge the role that schools play in parents' lives at transition. There are no recent resources that we are aware of that help school staff to work with parents on transition planning other than the 'Trans-active' package (W7) which is largely aimed at schools working directly with young people, not necessarily their parents.
Grove and Giraud Saunders (2003) point out that the role of key contact could be played by the Connexions Personal Adviser (PA) who should be able to take a semi-independent approach to co-ordinating the transition planning process. But it is unclear whether a Connexions PA responsible for a young person's action plan can hold other parties to account for the overall implementation of the young person's transition plan. Connexions resources (W1, L13, L14, L18 and L22) are locally produced in some areas of England but provide both local and national information. Their website (W1) is not specifically geared towards young people with learning difficulties but does link to the Family Fund's website 'After 16-What's New?' (W4) which covers young disabled people generally, rather than young people with learning difficulties specifically.
This lack of clarity about who is responsible for co-ordinating the process, continues alongside clear instructions from the Qualifications and Curriculum Authority (2003) that transition programmes (within education) should have a clear focus, coherent provision, a strong emphasis on meeting the individual's needs and exist within a framework of flexible provision.
Hudson (2003) recognises that person centred planning, which includes an emphasis on continuity and a historical perspective about what has happened in the young person's life so far, appears to be a way forward in ensuring that transition plans reflect the aspirations young people have for their future. Several other recent authors confirm the importance of an 'holistic person centred approach to transition encompassing the broader aspects of planning for adult life'(Ward et al, 2003a; O'Sullivan, 2001; Bond 1999).
Under the provisions of the English White Paper Valuing People local agencies should be introducing person centred planning for young people with learning difficulties as they move from child to adult services. The Valuing People Support Team (set up to support implementation of the White Paper) recommends that person centred approaches should be adopted within any of the different agencies' planning processes. This approach seems to be the way forward. The Valuing People Support Team stresses that person centred approaches to transition planning should involve discovering what is important to the young person and the support they want and need, as well as exploring their dreams, aspirations and what could enable them to achieve what they want in the context of what is practical and available locally (Valuing People Support Team, 2003).
The adoption of person centred planning would respond to parents' concerns about the real prospects and circumstances of the young person. It would enable their dreams and aspirations to be both supported yet grounded in their real world, with appropriate steps being taken to move towards their ideal situations. This person centred planning needs to be underpinned by strategic and operational multi-agency working. The draft National Service Framework for Children in England has proposed the development of multi-agency protocols which would actively promote multi-agency working although Russell (2003) recognises that this is a daunting task and would require a level of collaboration and sophistication that has not previously been achieved. Russell also suggests that the forthcoming National Services Framework (NSF) could set standards for transition which could provide a template for Connexions services.
The draft National Service Framework for Wales (National Assembly for Wales, 2004) proposes the development of one multi-agency plan for each young person, covering all aspects of the young person's life, as well as access to a transition keyworker and opportunities for work experience as part of the transition planning process.
As Ward et al (2003a) note, there is still a lack of information about the transition process and the choice and possibilities available at this time. Mitchell and Sloper (2000) confirm parents' need for accurate, up to date, easy to understand information. Parents specifically want local contact information, including contact names, so that they can get the information they need. Information for young people and parents is, however, only one aspect of the support needed. They would also like a keyworker to support the young person, and their family, and co-ordinate the multi-agency working around the young person's person centred transition plan. Ward et al (2003c) underline parents' need to talk to agencies as well as to have information, and to see examples of the choices made by other young people and their parents. The Valuing People Support Team's 'Information Pack for Transition Champions' (N36 and W9) gives comprehensive information about all the different agencies involved in transition planning. The 'All Change' pack (N13) also gives a good explanation of the different agencies that families might expect to encounter at this time. The review of available resources (Appendix C) identified some good examples of resources where areas had combined both local and national information successfully, with Surrey being the most notable (L11). Two other local resources that provide information within a multi-agency context, are the website from Fusion4 (L24) and the Learning Partnership West, South West co-ordination project and SENSE (L25).
7.3 Changes and choices at transition
This section discusses the various changes and choices facing young people and their families, the information that is required by young people and their parents and the extent to which their need for information is reflected and addressed in the literature and resources.
Getting a job was one of the two ways in which the young people wanted to make use of their days. (The other - going to college - is discussed below.) Employment was one of the key markers of having attained adulthood, was linked to having their own money, and could also lead to other markers of independence, such as their own place to live. Three of the young people in the discussion groups already had part-time jobs. Other young people wanted information on how to get a job and recognised the benefit of going to college to learn about work. At least two of the young people in the groups were going back to college in preparation for their chosen career.
Parents also wanted to know what opportunities were available for their young person employment wise, what would be appropriate for them and whether support would be available. Parents also mentioned work based training, recognised as an important second choice for skill development by the Collaborative Group for Learning Disabilities in the North West (undated). Older young people were aware of the possibility of work experience and of supported employment agencies which could help them get a job and support them in it.
The literature recognises that having a job is central to a young person's self esteem, confidence and the way they are perceived by others (Heslop et al, 2002; Hendy and Pascall, 2001; Mitchell, 1999). However, the literature also shows that very few young people actually have 'an ordinary job'(Heslop et al, 2002; Grove and Giraud-Saunders, 2003). Training for, and getting, a job should be central to the person centred planning process (McAnespie et al, 2000). We found only one specific resource about employment, written in an accessible style and produced for young people with learning difficulties from National Institute for Adult and Continuing Education (NIACE); (N7); although several of the more general resources have useful sections on this subject (N1, N13 and N14). NIACE also produce a resource for professionals (N35) that helps them to plan courses that will help young people to make the transition to work.
College and day services
Going to college was the alternative option discussed by the young people in relation to how they would spend their days. They either saw college as their next step or as a way of preparing for their future career.
The parents wondered whether there was guidance available about the most appropriate courses for their young people, whether certain courses were appropriate or whether residential college was an option (Morris, 2002). Some parents and young people saw college as the only route of progression or the 'obvious next step'(Rowland-Crosby et al, 2002; Mitchell, 1999; Heslop et al 2003). This perception is reinforced by the close contact parents and young people have with schools, which organise and support transition to college. Of the resources located only two focus specifically on college (N5 and N6); neither gives specific advice about what courses might be available.
Day services were only discussed by a minority of parents in relation to the options available after college. The young people did not discuss the use of day services at all; their aspirations were higher. The literature, however, indicates that many young people do use day services after leaving college (Heslop et al, 2002). The parents involved in the study by Mitchell (1999) wanted purposeful and meaningful activity for their young person. Hudson (2003) suggests this might be pursued via person centred planning and the use of direct payments.
Where to live
The young people and their parents wanted information on the choices that were available to them, such as their own flat or living with friends, or whether it was acceptable for them to remain in the family home. Parents required in-depth information about the suitability of each option and the support that would be available for their young person.
The literature recognises that thinking about where a young person should live is both exciting and worrying for both young people and their parents (Cowen, 2001). Parents often do not receive the information they need, yet they are recognised as a vital support to young people as they leave home (Morrow and Richards, 1996). Several authors stress the need for careful support for parents around the issue of their young person leaving home. On the one hand, leaving home is a natural part of human development; on the other, the young person may perceive that support from parents in this way constitutes 'being chucked out'. Morris (2002 ) points out that for young people with high support needs, there are additional barriers, such as the assumption that they might have to live in a nursing home, as well as a significant lack of options, which further complicate parents' and young people's thinking and decision making.
There are three resources available to families and young people that specifically concern decisionmaking around where to live. One, by the Foundation for People with Learning Disabilities (N4) is written in an accessible style, for the young people themselves. The Joseph Rowntree Foundation (N20) has produced a book and video for families to help with the transition from home to independent living, while Housing Options (N21) have a resource pack which includes a manual, video and photocards. Some of the general resources also include information about a range of living options (N1, N2, N13, N14).
The young people wanted information on handling money as well as other ways in which money would support their independence. These included considering issues such as: 'how to pay bills, getting a job and having to balance it with benefits' and using banks.
Parents were concerned that their young people should be supported in handling and understanding money. They were also worried about the impact of changes in the young person's benefits they receive and their family finances. Parents specifically wanted clear, easy information about benefits. This need for information was also a consistent theme in the literature (Heslop et al, 2003; Ward et al, 2003c; Edinburgh Social Inclusion Unit, 2001). Direct payments, were only mentioned by one parent. Rowland-Crosby et al (2003) suggest that the uptake of direct payments had not been encouraged by local authorities. Within the general resources, there were references to handling money and benefits advice (N1, N2, N13, N14, N17, W4 and W7) but no specific resources had been developed to support families and young people with financial matters.
Most of the young people talked about needing information about friendship. They recognised the importance of social networks and keeping in touch with family and friends when living independently. They wanted information on strategies to maintain friendships, particularly if the young person attended a special school some distance from their home, as well as how to socialise. The young people in the Barnardo's study (undated) confirmed the need for support to promote and sustain friendships.
The parents recognised social activities as opportunities for friendships to grow and that their young people needed to extend their circle of friends. Supporters recognised the support that should be given to ensure young people can maintain and develop friendships.
Work by Heslop et al (2002) also documents that friends come and go and that young people were concerned about leaving some friendships behind and about how to maintain others. While friendships are recognised as one of the most important things in young people's lives (Morris, 2001, 2002; Pennington, 2001; Smyth and McConkey, 2003), the literature documents the barriers to an independent social life including lack of transport, lack of peer group and a high degree of adult surveillance (Morris, 2002; Rowland-Crosby et al, 2002). It also indicates that young people's friendships are not given a high priority in transition planning (Heslop et al, 2003; Morris, 2003). This was borne out by the resources; very few placed an emphasis on this area. As noted in the earlier section on emotional support there is little attention paid to this subject, apart from resources from the Foundation for People with Learning Disabilities (N9 and N10) and the 'All Change' pack (N13).
Sex and relationships
The young people wanted information on all aspects of sex and relationships, such as advice on getting a boyfriend or girl friend, sex and contraception. Their parents wanted advice about how to approach the issues and what information to give. The parents involved in Heslop et al's (2002) study were concerned about the difficulties in supporting their young person in a sexual relationship. Parents did not know where they could go for support or information in this area (Heslop et al, 2002; Clegg et al, 2001). Morris (2002) also suggests that professionals overlook this issue during the transition process.
Some information for young people appears to ignore the issue of sexual relationships or refers to it in an oblique way. The young people in the research project team preferred clear practical information. Within the resources reviewed no specific resource for young people was found that addressed these issues in detail and in a clear, accessible way. This was a major gap in the available resources. Some resources aimed at families were found (N23, N24 and N25) but these were not very recent.
The young people required information on all aspects of 'being safe'. They spoke of needing to know about being safe on the street and while out socialising as well as being safe at home (from burglars and from fire).
Safety, or the management of risks, was also a key theme within the parents' discussion. Parents were trying to balance their young person's aspirations with their personal knowledge of their young person's vulnerabilities and support needs and their concern about the wider society's response to their child. This theme permeated all of their discussions about the information they needed about the different choices available to their young people at transition. However, only one study (McConkey and Smyth, 2003) appears to focus on this issue. This study suggests a model of parental risk taking, which Townsley (2004) describes as an interesting, novel and potentially very significant tool for supporting families and young people to cope with risk and uncertainty during transition: a 'shared risk' strategy where parents, young people and professionals explore their mutual expectations of hazards. This strategy highlights the need to promote and confirm the young person's competences and to continue their education through practising skills in real life situations. Self advocacy and advocacy for young people is important here, to enable them to demonstrate their abilities, argue for positive consequences and propose conditions that are acceptable to them. Only one resource, from the Citizenship Foundation and United Response (N2) was found that addressed these issues around safety and risk taking in detail. A resource from the Family Planning Association (N27) contains some discussion about 'keeping safe' in the context of relationships.
Being in charge of your life
The young people stressed the importance of being in charge of their lives, understanding their own capabilities and knowing 'what they can handle'.
This theme of empowerment was confirmed by supporters but not explicitly promoted by parents generally in our discussion groups. But parents whose children were involved in a self advocacy group involved in these discussions were full of praise about how the group encouraged their young person's independence and speaking up skills. Within the literature, however, parents balanced their aspirations for their young person against a sense of anxiety regarding the future (Mitchell, 1999). Some of the resources for young people which we reviewed were empowering in tone (for example, N13) but little explicit discussion of empowerment was found.
The right to be treated respectfully and play a full part in society
The young people's ideas about the ways in which their lives would develop, reflected an underlying assumption that they would play a full part in society. One of the young people specifically said she would like to help 'less fortunate people'. The parents believed that the young people needed role models to emulate; the supporters' discussions highlighted the importance of young people both being 'respected' and being aware of their rights and responsibilities. The supporters felt that they had a key role to play in supporting this development, by knowing the individual and their context and helping them to develop their views and skills.
Interestingly, although empowerment is a key information need for supporters, the literature, as noted above, does not specifically discuss ways in which young people can be empowered. It does, however, refer to strategies, to support young people in making choices such as Talking Mats (Cameron and Murphy, 2002). The literature also highlights the importance of real-life examples and role models to help young people think through choices and the importance of discussing dreams and fears for the future through MAPS (Making Action Plans - Goupil et al, 2002). The methods followed in the Transactive Project (Pennington, 2001) reflected the significance of role models. The Transactive Project, as we have seen, was praised by the young people for its clarity of presentation and examples of choices, with one member of the project team stating that they would use the planning sheets provided to plan activities in the community. Amongst the resources, there were a number that were designed to help young people with communication difficulties. The 'Acting Up' website (W12) is an example, as are 'Talking Mats'(N39) and the Transactive website (W7) mentioned above.
The young people's needs for information on living independently focused on very practical issues, which often linked with the theme of money. They included information on a wide range of self-help skills such as: cooking, time, understanding technology and television listings, as well as transport.
The parents were concerned with their young person's 'independence skills' at college, how they could live and travel independently in the future and the support that their young person would require to function at an appropriate level of independence in all areas of their life. They specifically mentioned transport issues which are recognised in the literature as having a fundamental impact on young people's ability to work as well as to maintain a social life (O'Sullivan, 2001; Morris, 2002). Supporters were also concerned that young people should have a realistic understanding of their skills and the support they needed.
The resources available to young people and their families do not directly address issues of living independently. A game, 'Going Places' (N8), has been produced to help young people with learning difficulties with their travel training, but other than this the resources reviewed did not include practical guidance about daily living skills.
Rowland-Crosby et al (2003) are clear about the kind of support young people want from a Connexions Personal Assistant (PA), including treating young people as a grown up and not being patronising. However, there appears to be little literature discussing the skills supporters should have to enable young people to live independent lives. Supporters within the discussion groups stressed that they needed information on 'how can you help as a supporter?'as well as information around 'youth work skills, personal development skills'. Within the resources reviewed, these issues were addressed to a certain extent within the video produced by Empower (N10), which covers how to get a Personal Assistant, what to look for in a PA and difficult issues that might arise. A resource produced by the National Youth Agency (N41) describes the work of the Youth Personal Assistance Support Scheme and includes good practice guidelines.
The young people wanted information about how to have a healthy life, such as healthy food, hygiene and not smoking. Their parents, however, discussed health issues rather than healthy living, perhaps in relation to the support the young people would need in all aspects of their life. The literature discussed young people and their families' need for information checks and health action planning (DH, 2001; Pearson et al, undated; Ward et al, 2003c). These issues were not well addressed within the resources, except as a small part of some of the general resources (N13, N14).
Within the young people's discussions of the changes that occur as they grow up, emotional changes featured strongly. The young people noted that they were provided with information at school or college about emotional changes and that they were supported by friends. The supporters stressed the importance of emotional support for young people during transition. The literature reveals that many young people with learning difficulties experience mental health support needs during transition and that existing conditions can be intensified during this period of a young person's life. It also suggests the importance of friends supporting each other and adults who have the time to listen (Williams, 2003; Morgan, 2003).
These issues were not thoroughly addressed within the resources available to young people and their families. However, a series of projects funded by the Foundation for People with Learning Disabilities under the umbrella title of 'Count Us In' (P6) may go some way to address this, as resources from them are produced. There is also an Association for Real Change project (P2) around bullying which has produced a leaflet for young people which raises awareness about bullying of young people with learning difficulties.
Having fun, music and sport
The young people talked about wanting information about having fun and accessing music and sport. They required specific information on how to access social environments and sports clubs etc. A couple of young people specifically mentioned sporting role models. The parents and supporters discussed the young people's need for meaningful and appropriate leisure and social activities. The literature suggests that young people's wider goals and aspirations including leisure should be considered in transition planning and person centred plans (Bond, 1999; O'Sullivan, 2001; Ward et al, 2003c).
Having 'fun' is important to the young person's overall well-being but issues around leisure were only addressed within the resources to a limited extent, for example in a newspaper style publication, Progress 2004 (N1). However, this resource was produced for disabled young people in general and was not written in an accessible style. Some other resources did cover this issue in an easier to understand way, but only as part of a more general guide to transition (N2, N13, N14, N15, N17 and N19).
Issues relating to ethnicity were highlighted within one of the discussion groups as being very important. Black supporters stressed the importance of services understanding parents' fears that services might not recognise young people's cultural support needs and the importance of young people remaining in their local community in their adult life. Within the literature Morris (2002) and O'Sullivan (2001) recognise that young disabled people from Black and minority ethnic communities are particularly disadvantaged at transition. Services generally know very little about their needs and views and they and their families find it especially difficult to get information about options and possibilities. Low expectations can also inhibit their choices. Rowland-Crosby et al (2002) also report that young Black and Asian disabled people may have very different views from their parents about what they want to do in the future.
A small amount of material was located within the resources relating specifically to issues of ethnicity. A website is in development by ARC (Association for Real Change) (W2) covering issues around transition for young people from Black and minority ethnic communities. They have also produced an 'Ethnicity Toolkit' (Valuing People Support Team, 2003) for Learning Disability Partnership Boards to use in their local communities as part of the implementation of the 'Valuing People' White Paper. The Valuing People Support Team have also produced 'Framework for Action' around learning difficulties and ethnicity (N33) which includes a chapter on transition, highlighting issues that are of particular relevance to young people from minority ethnic communities. The Aasha Project (P1) looks at the involvement of young people with learning difficulties from a South Asian background in post-school education and training. One of the Foundation for People with Learning Disabilities' projects in the 'Count Us In' programme (P6) is looking at self-defined service models for young people with learning disabilities and mental health needs from ethnic minority communities.
This section discussed whether the key themes within the young people's, parents' and supporters' information needs are represented in the literature and reflected in the resources available to support young people and their families at transition. A table summarising the key themes and the extent to which they are addressed and reflected in the literature and available resources (Table 1) can be found in Section 9.