The Road Ahead – Main report
9. Summary and recommendations
This report has brought together the findings from three interlinked investigations around transition for young people with learning difficulties and their parents, undertaken between October 2003 and March 2004. It provides an insight into the views of young people, their parents and supporters about transition and the extent to which their information needs were recognised in the literature or reflected in information resources available on transition at this time.
This section begins by reviewing young people's, parents' and supporters' perspectives on the kind of information they need. It shows that young people, parents and supporters require information in the same areas, but that this needs to be tailored to their particular perspectives and be provided within a context of appropriate support and person centred planning. It goes on to summarise the types of information required and the extent to which they are discussed in the literature or reflected in the resources available. Key pointers regarding the development of a website about transition for young people and their families are then provided.
The information needs of young people
Most of the young people involved in this study did not initially understand the term 'transition'. For some of the younger people the issue seemed irrelevant as they were staying on at school until they are 19 and they were happy living at home. Others had begun upon the series of changes that occur in adult life: had part-time jobs or were doing work experience with a view to getting a job or at college to learn about future work options.
The young people had expectations similar to their peers and those expressed in the literature as markers of adulthood. They expected to go to work or college, have a social life, continue their hobbies, make friends and have relationships. They did not mention use of services but did require very practical information and support that would enable them to 'be in charge of their lives and to live more independently'.
The young people recognised that while growing up there were emotional changes as well as choices to be made. They wanted information on music, sport, hobbies and socialising as well as information to help them be in control of their lives. One young person specifically highlighted the contribution young people could make to society through helping others.
The parents' and supporters' ideas of what the young people needed to know reflected their own needs for information on transition. Parents needed information regarding the transition process and their role within it; they believed that their young person would want to know about the transition process and their role in it also. Supporters were concerned with empowering the young people to make their own choices and to have their voices heard, while having a realistic understanding of their abilities and life choices. They felt that young people would want to know about their options and know that their voice would be heard.
Information at transition: the perspectives of parents
The parents recognised that transition was about their young person growing towards adulthood and adult responsibility. This understanding was contextualised within concerns about their young person's ability to take on the responsibilities of adult life and how they would be treated by the wider public. Parents often lacked any understanding of the transition process, commonly not realising that the school transition process should cover all the aspects of the young person's life, not just a move from school to college. They talked about feeling scared and frightened, not knowing what their role was in the process, but being aware of the lack of services available and that they might have to fight to get their young person the support they needed. They felt they needed information on each of these areas.
Support was a dominant theme within the parents' discussions. They were concerned about their young person getting the right support in all aspects of their life as they moved into adulthood. Some parents discussed the longer term issue of support when they were no longer able to support their young person themselves.
The supporters confirmed the parents' apprehension about transition and lack of information about the process, and the parents' concern about support and the choices and options available to them and their young person.
Information at transition: the supporters' perspectives
The supporters discussed transition from the viewpoint of the young people. They recognised that transition was a very emotional process for them. It was a time of confusion, fear, challenge and excitement during which appropriate and realistic emotional and practical support was vital. They felt that young people should have the support of 'trustworthy people' at this time while recognising that the young people's dreams and aspirations might be met with a lack of choices and struggles to get appropriate services.
The supporters felt that they needed to know the young person very well, and their home background and the wider support available to them, in order to be able to support and empower them through this emotional and challenging time. They needed full information about the transition process locally and the choices/services and supports available, as well as how they could contribute to the young person's planning process.
Supporters highlighted the importance of person centred planning to ensure that the young people's expectations were championed, whilst being sensitive to the realities of current local service provision and availability.
Detailed information was therefore needed not only on the transition process (both at a national and local level) and the roles and responsibilities of everyone involved, but the choices and changes facing young people and how these could be grounded and worked through at local level.
What information do people need about transition?
Young people, parents and supporters need detailed information about the transition process. They need to know:
- What transition is, who is involved and the different roles they have to play - whether as young person, parent, supporter, social worker, teacher, Connexions Personal Adviser.
- What rights, entitlements and procedures exist at a national level. This includes information on changes in funding and benefits and explanation of terms such as: Supported Living; Direct Payments; HAPs (Health Action Plans).
- How the transition process is interpreted locally.
- How person centred choices can be accessed locally.
- What services are available locally and what options might be developed for the individual through the different agencies. This information should be up to date and include relevant contact details.
- What support is available to young people and families throughout the transition process and into adult life; are there specific transition workers or keyworkers?
In addition to this basic understanding of the transition process and how it is implemented locally, information needs to be provided to support young people, parents and supporters to understand, and work through, a range of other issues arising at transition. These include:
- The changes occurring and their impact on family relationships
- Adult rights and responsibilities
- Empowerment and self advocacy
- Increasing independence, including taking opportunities, safety and risk taking.
These issues need to be presented in a concrete and practical way, using activities to enable young people, their parents and supporters think through the implications of the young people's choices and changes in the context of their own personal and emotional lives.
9.6 Information about changes and choices
The young people, parents and supporters also wanted more specific information on the following areas:
- Going to college
- Where to live
- Money (including handling money and the impact on benefits of getting a job or moving out of home)
- Sex and relationships
- Being in charge of your life
- Rights and responsibilities (including helping others, playing an active role in the community, and the law and people with learning difficulties)
- Living independently
- Healthy living
- Emotional changes
- Having fun
- Changes in services.
The information provided for young people, parents and supporters needs to vary in presentation and format to meet the particular needs of each different group.
9.7 What do the literature and available resources say about the information needs identified?
A full review of the literature on transition (Townsley, 2004) and review of the current resources available (Watson, 2004) were also undertaken as part of the project. The findings from the review of resources are summarised in Table 1 (p55).
Key points from the literature review were as follows:
- Transition is a stressful time.
- Young people's aspirations may not be met.
- Young people are often not involved appropriately in their own transition planning process.
- Family support and involvement is very important.
- Confusion exists around the transition process, the way it is implemented locally and the nature of the different plans made by different agencies.
- As well as clear information, families need a key contact who is independent of services to help them through the process. It is unclear whether Connexions Personal Advisers are in a position to undertake this role.
- An holistic approach to person centred planning is essential at transition. Such an approach needs to ensure that young people's aspirations are supported and championed, whilst being sensitive to the realities of what is currently available in terms of services and support.
There are many resources designed to support young people and their families through transition. The resources for parents vary hugely in format and detail, ranging from factsheets to a 246 page pack. The most comprehensive of these is the 'All Change' pack (N13) which describes all of the parties and issues that are likely to be involved in the transition process and has sections for both young people and parents. A number of local resources combine both local and national information in the way which parents said they wanted.
Some resources are specifically for young people and aim to explain the transition planning process. These include resources such as Transplan , (N3), Planning My Future, (N11) and The Big Picture, (P36 when completed). The Transactive (W7) website aims to help young people create a multi-media passport about themselves in transition.
How well do the literature and resources reflect young people's, parents' and supporters' information needs?
|Theme||What the literature says||Coverage in resources|
|Work - getting and keeping a job||While having a job is a marker of adulthood and an aspiration of many young people, few young people actually have a proper job.||There is only one specific resource about employment produced for young people, although several of the more general resources cover the issues. There is also a resource that helps professionals plan courses to support young people in their transition to work.|
|College - going to college as a step towards a job or the obvious next step||College often seen as the only route of progression.||Two resources specifically around college.|
|Where to live||Thinking about where to live is both worrying and exciting. Parents need support to discuss the issue with young people. There are additional barriers to moving out of home for young people with high support needs.||Choices and decision making around housing are covered in specific resources, one of which includes a video, while another has choice cards, as well as in a number of the general resources.|
|Money - Young people were concerned about handling money while parents were also concerned about benefits||Clear easy information about benefits is required. The uptake of direct payments has not been encouraged strongly by local authorities.||No specific resources on handling money, although it is mentioned in a number of the general resources.|
|Friends - the importance of social networks, keeping in touch with old friends and making new friends||Friendships are recognised as one of the most important elements in young people's lives. Concerns re. leaving friends behind and how to maintain friendships are recognised, while the barriers to maintaining friendships are documented (lack of transport, lack of peer group, high level of supervision). Friendships, however, are not given a high profile in transition planning.||Few resources emphasise the importance of friendships other than the All Change Pack and resources from the Foundation for People with Learning Difficulties.|
|Sex and relationships||Parents concerned about supporting their young person in this area and do not know where to go for information and support.||No specific resource for young people addressing the issues in a clear, accessible way. Some resources aimed at families but these were not very recent.|
|Safety (in all environments)||Only one study looks in depth at how to cope with risk and uncertainty during transition.||Only one resource discusses issues of risk in detail. One resource covering 'keeping safe' in the context of relationships.|
|Being in charge of your life - knowing own capabilities and making their own decisions||Confirms parents are balancing their aspirations for their young people with concern about their abilities. Notion of choice is often unclear to young people and strategies to support choice such as MAPs and talking mats are discussed. Importance of parents in supporting young people's choice is recognised.||Little explicit discussion of empowerment although some of the resources for young people are empowering in tone.|
|Rights and responsibilities - the right to be treated respectfully is inherent within young people's discussions and key theme in supporters' discussions||Literature does not specifically discuss how young people can be empowered. Examples of aids to communication given and importance of role models and real-life examples stressed.||A number of resources designed to support communication difficulties and to think through choices.|
|Living independently - very practical information required related to self-help skills including handling money||Issues around transport specifically mentioned as this impacts on both young people's work and social life.||Little guidance about daily living provided although some guidance available on personal assistance.|
|Healthy living - young people focusing on healthy eating etc while parents discuss health issues||Information about health checks and health action plans.||Not well addressed within the resources, except a small part of some of the general resources.|
|Emotional changes which occur as young people grow up||Importance of support from friends recognised.||Issues not thoroughly addressed. One leaflet around bullying.|
|Having fun, music and sport including information on how to access social environments||Little attention paid in the literature.||Issues covered only as part of a general guide to transition.|
|Changes in services - mentioned by parents and supporters only||Many young people use day services. Parents want services to be meaningful and have a purpose.||All Change pack has a section on services.|
Table 1 summarises the way in which the literature and resources reflect the key information needs expressed by the young people, parents and supporters about the changes and choices available at transition. (Full details can be found in Section 7.) The table shows that many of the themes were discussed in the literature, which recognised the supporters' and parents' concerns that the young people's dreams and aspirations might not be realised. The literature showed that:
- Few young people had jobs
- Many young people used day centres
- Going to college was often an expected route of progression
- Parents needed support to discuss housing issues with their young person
- There is a lack of clear information about benefits and information about direct payments
- Choices may be difficult for young people; some strategies for decision making are suggested.
The literature review confirmed that safety and risk is a major concern for families and young people with learning difficulties at transition (Ward et al, 2003c; Heslop et at, 2002). However, only one study has focussed entirely on this issue. (McConkey and Smyth, 2003). Similarly the literature on transition highlights both the importance of support to make choices at transition and that the notion of choice can be very unclear to many young people with learning difficulties (Rowland-Crosby et al, 2003). But issues of empowerment, rights and responsibility at transition have received scant, if any, attention in the published literature reviewed for this project.
The review of resources showed that there were a number of general packs which covered the majority of issues raised by study participants. The 'All Change 'pack (Mallet et al, 2003) most closely reflected the themes above. Generally, there was less information than would have been expected on employment, while only two packs specifically focused on transition to college. There was no resource focusing specifically on handling money for young people at transition and no specific information, in an accessible format on sex and relationships for young people. The information available for parents about sex and relationships was not recently published.
There was also little information that would support young people to be in charge of their lives. Although empowering in tone, the resources did not include direct information on empowerment or guidance on daily and healthy living. Neither did the resources respond to the emotional aspects of transition, particularly how to deal with disappointment or frustration, when young people's dreams could not be turned into reality.
Clearly, resources are available for people with learning difficulties on these various topics, such as housing, employment and self advocacy etc. But these themes are not covered in the specific information produced on transition for young people.
No resources were found to help schools with the process of transition planning, other than the Transactive website which helps young people develop information about themselves for use in the transition process.
Presenting information about transition
This final section summarises the best ways to present information for young people and parents, including on a website.
It was clear from the discussions with the four groups of young people with learning difficulties in England and Wales and the transition project team, that a website presenting information about transition for young people with learning difficulties should have the following features:
- It should be age appropriate - using adult looking images and language which is clearly understood by young people.
- Text should be large.
- Sentences should be short, clear and use easy words. Long words should be explained.
- The layout should be clear with lots of space around the text and pictures.
- Small amounts of information should be provided at a time (with links to further information where appropriate).
- Pictures should be used to convey the messages within the text.
- Pictures should be clear and simple. Each picture should convey one message. Pictures should not use words to get their message across.
- The pictures and text should be checked out with young people with learning difficulties to see that they understand correctly.
The design of the site should:
- Use colour, be inviting, fun and easy to use
- Use colour or symbol coding and easily recognisable buttons to help navigate around the site
- Use activities and interesting examples to help young people understand the text and apply the messages to their own lives.
Information for parents also needs to be clear, inviting, not too densely packed with information, but provide them with an overview of the national and local context, including relevant contact information for services.
Finally, remember that information should be developed in conjunction with young people and their parents. Explaining concepts very clearly can involve a lot of thinking and discussion time. Making a website which is suitable for young people with learning difficulties, their families and supporters will take a great deal of consultation (with all relevant parties), time and commitment. It will need to recognise that young people and parents will need information in a variety of other ways as well, including personal support, such as a keyworker, during the transition process.