The Road Ahead – Literature review
5. What to expect from services at transition
Although several different services have statutory roles to play at transition, families and young people are often understandably confused about what to expect from professionals and providers at this time. The 'Valuing People' white paper (Department of Health, 2001) states that services should ensure continuity of care and support for young people with learning difficulties and their families during the move into adulthood, and should provide equality of opportunity to enable as many disabled young people as possible to participate in education, training and employment.
The main services which should be involved in planning for transition and in implementing transition planning are:
A range of other professionals may also be involved in planning for the future, but do not have specific statutory duties at transition. These include: local adult education provision, local colleges, local supported employment projects, the youth service, leisure services, housing services, Job Centre Plus, local adult information, advice and guidance providers (Valuing People Support Team, 2003).
Although a fairly recent development, Connexions should be delivering a service to all young people in England by 2006. The Connexions service can begin working with young people with learning difficulties from the age of 13 up to the age of 25 where appropriate. The main way in which Connexions offers support to young people is by providing a Personal Adviser (PA) to help them with a whole range of issues around transition. All young people with learning difficulties have the right to a Connexions PA if they want one. The role of a Connexions PA is broad and encompasses several statutory duties as well as the provision of a wide range of information and advice individualised to the needs and interests of the young person.
A Connexions PA has to attend the transition review for young people in Year 9 and co-ordinate the resulting transition plan (under the DfES SEN Code of Practice 2001). Once the transition plan is in place, the Connexions PA is responsible for ensuring that the plan is implemented. The PA can (and should where possible) continue to attend annual reviews for the young person until they leave school or up until a person's 25 th birthday where needed.
In addition to playing a role in the transition planning instigated by Education, Connexions PAs also undertake their own form of planning with young people, using an Assessment, Planning, Implementation and Review framework (APIR) and resulting in a Personal Action Plan. The Connexions service also has to carry out an assessment (Section 140 assessment) when a young person is in Year 11 of school (age 16). This assessment is to take account of what the young person wants to do and what support they will need to achieve this. The information gathered from the Section 140 assessment should then be passed to local Learning and Skills Councils (LLSC) so that they can identify gaps in provision and profile training and learning needs and support for this group as a whole. Recent research (Rowland-Crosby et al, 2003b) has found, however, that this information sharing does not appear to be happening. Completed Section 140 assessments are simply being forwarded to the 'destination' as a way of clarifying what the young person will be doing and what their support needs are. As the authors point out, not only is this duplicating the education-led transition plan but it also means that information about the whole local population of learners with learning difficulties/disabilities is not being actively shared with LLSCs (Rowland-Crosby et al, 2003b).
On a more positive note, Grove and Giraud-Saunders (2003) suggest that the advent of the Connexions PA seems like a promising means of improving the experience of transition and outcomes for students and families. Connexions PAs are supposed to be 'multi-skilled workers' who can provide a full range of advice, information and support at transition. In their study of the PA role in two special schools and a further education college in Lewisham (England), Grove and Giraud-Saunders found that there was general agreement amongst professionals and parents that the main components of the PA's role were to co-ordinate transition planning, provide information about options, help to access resources and advocate for students and families where necessary. And in Rowland-Crosby et al's (2003b) research, families felt that the presence of a PA at Transition Review Meetings was very positive in that there was an extra person speaking up for them. Young people with learning difficulties/disabilities also said they valued the independence, expertise and support offered by a PA.
Rowland-Crosby et al (2003b) have found that young people with learning difficulties and/or disabilities have clear views about the sort of help and support they want from a PA:
- An approachable person, who smiles and has a good sense of humour.
- Someone who looks at me when they are talking to me and speaks clearly and slowly.
- Someone who isn't patronising and treats me like a grown-up.
- Someone who is an expert and knows what they are talking about - understands the disability or difficulty I have.
- Someone I have known for some time, who knows about what kind of support I need, who knows what I want to do when I grow up and who I can trust.
- Someone from outside of school, who I can meet with at different times.
- Someone I can call at the weekend or in the holidays if things are getting difficult.
Research by Grove and Giraud-Saunders (2003) has also found that families and professionals wanted a PA who could:
- Act as a point of co-ordination.
- Have neutral status.
- Supplying good information to services about students.
- Inform families and students of their entitlements.
- Remind agencies of their responsibilities.
- Be someone who would be straight with parents about what they had to do.
- Offer crisis management.
- Track children at risk.
- Help individuals to find appropriate and attractive activities inside and outside school.
- Connect the school and student body with the community.
- Support students to have a voice in different forums.
- Be 'good to talk to'/trusted.
- Help students to overcome barriers to accessing college and to settle down there.
- Understand child protection issues.
However, recent and on-going research into the effectiveness of the Connexions service for young people with learning difficulties has already highlighted some significant concerns about the implementation of Connexions and the role of the PA. Rowland-Crosby et al (2003b) have found that the wider role of Connexions, as more than just a careers service, is poorly understood by young people with learning difficulties and their families. Many other professionals may also be unclear about what a PA can offer (Ward et al, 2003a) and indeed PAs themselves may be less than keen to take on the broader aspects of their 'fully differentiated' role (Rowland-Crosby et al, 2003b). PAs who are already working with young people with learning difficulties have highlighted that they lack knowledge, information and training in certain areas such as mental health issues, Autistic Spectrum Disorders, adult protection, and support services more generally (Rowland-Crosby et al, 2003b).
Other issues include a lack of time, due to very large case-loads, for PAs to get to know young people in order to help them to make decisions (Rowland-Crosby et al, 2003b), and lack of access by young people to their own copy of the Personal Action Plan despite guidance stating that young people should maintain 'ownership of the plan' and be given a copy (Rowland-Crosby et al, 2003a). Indeed, Hudson (2003) asks whether the very wide remit of Connexions may lead inevitably to PAs focusing on helping people to access education and training, rather than delivering the particular forms of practical and learning support that young people with learning difficulties require at transition. Grove and Giraud-Saunders (2003) suggest that the success of the PA role depends on building trust with parents and professionals. To be effective, PAs must have an official role in school life that enables children and families to see them as insiders, but does not completely identify them with the systems that maintain discipline or allocate places and resources. They must also have 'clout' in terms of a formal status with other agencies involved in the transition process. The literature appears to demonstrate that this role has, so far, been very difficult to achieve.
When a young person (with a statement of special educational needs) reaches Year 9 (age 14) of secondary school, the Local Education Authority should organise a meeting to make plans for the future. This is called a Transition Review Meeting. This meeting will be the first point for developing the transition plan that will set out a young person's future plans and how these will be met by services. The head teacher usually has responsibility for making sure that the transition plan is written, but can delegate this task to the Connexions Personal Adviser. After the Transition Review Meeting, the transition plan is supposed to be reviewed and updated every year (with the young person and their family) until the young person leaves school (Heslop et al, 2002).
The purpose of the Transition Review Meeting is to discuss the young person's progress at school, look at how they support is helping, look at what their educational, and other targets might be for the coming year, think about what support the young person needs to make a smooth transition to adult life in general, including the transition to further education or work if appropriate (Valuing People Support Team, 2003). The 2001 revised SEN Code of Practice also stresses the importance of ensuring that young people are involved in making choices and decisions and that parents are treated as partners throughout the transition planning process (Ward et al, 2003d).
Despite legislation and guidance to the contrary, some young people with learning difficulties are continuing to leave the English school system without any form of planning (Ward et al, 2003a). In their study, Ward et al found that one in five young people with learning difficulties who had already left school had done so without any planning at all, despite the legal requirement. Of the young people involved in the study who were still at school, only two-thirds of them had a transition plan.
Several studies have highlighted a lack of involvement in the transition process by young people with learning difficulties and their families alike (Heslop et al, 2002; Morris, 2002, quoted in Thornton, 2003; O'Sullivan, 2001). Morris (1999) also points out that it is common for social services and education departments to assume that communication impairment precludes the possibility of giving an opinion. She stresses that if young people with high levels of support need are to be involved in transition planning, methods must be developed that do not rely solely on holding meetings or on verbal and written communication. Two studies have also highlighted that topics covered in transition planning are not those of most importance to young people (Heslop et al, 2002; Morris, 2002, quoted in Thornton, 2003).
As Ward et al (2003a) remind us, parental involvement is a fundamental principle of the Code of Practice. There is a general right to involvement and a specific right to documentation. Parents should be invited to Transition Review Meetings and receive copies of each review report. The transition plan should document parental expectations for the young person and include contributions that parents can make towards helping their child move towards adulthood. It should also include parents' own support and practical care needs for the future.
Parents involved in Heslop et al's (2002) study suggested that there should be better preparation for Transition Planning Meetings. They wanted more advice and guidance, to be told who would be attending meetings, and to know what were the duties and obligations of these people were to make sure meetings were effective. Parents also wanted a named person to co-ordinate the transition planning process. Smooth transitions were helped when families had access to key professionals who were consistent figures at planning meetings and who got to know the young person well (Ward et al, 2003b).
Clearly there is work to be done on improving the transition planning offered by and based within Education services. An English study conducted by Carnaby et al (2003) showed that reflection and feedback on the process of transition planning can enable education professionals to improve and refine their practice to the benefit of young people and families. The first phase of this study evaluated the involvement of students with learning difficulties in transition review meetings. The researchers found that many students were excluded from meaningful discussion in their planning meeting, and highlighted the fact that students with high individual support needs were particularly vulnerable to exclusion. Recommendations were made for improving practice in terms of inclusion and participation. Four years later, phase two of the study re-assessed ways in which practice in these areas had improved. The school had developed more individualised ways of working using person-centred techniques to enhance meaning for students including:
- All students being involved in their meetings for at least 80% of the time.
- Time and effort spent with the person and their family before the meeting.
- Inclusion in meetings focusing on the student and their plans and being aided by appropriate and individualised materials.
- Issues relating to health being discussed at a separate meeting so these were acknowledged but set in a context of the young person's strengths and achievements across their life.
- Timing of meetings scheduled to meet parent need and not to clash with the young person's favourite activities.
- Contact with outside professional is encouraged prior to the meeting - nobody to come to the meeting who has not met the student before.
- The role of friendships and relationships being explicitly acknowledged as an important topic for discussion and friends being present if desired.
- The transition review meeting not being the first time that the student's future was discussed, but was part of on-going work to support the move to adulthood.
- Professionals and families also highlighted additional possibilities for future work to support better transition planning, which included:
- Workshops for parents where transition could be discussed in terms of immediate events but also within the context of adult life for people with learning difficulties.
- Presentations from professionals, adult learning difficuties services, and other parents.
- Clarification about the role of careers advice and Connexions.
- Setting up buddy systems whereby students visiting employment and further education settings could make contact with ex-students already there and spend with them talking about what happens.
- Video recordings and photos of future options when visits are made to support discussion on return to school (Carnaby et al, 2003).
The main issues relating to the role and responsibility of social services departments at transition have already been spelt out in section two. Suffice to say that the role of social services professionals at transition may take many forms. The very least to expect is that a social services representative will attend transition review meetings so that information can be shared and the move to adult services planned and implemented as smoothly as possible. Some social services departments have Transition Workers, based either in children's or adult services and their role should be made clear to families and young people.
As explained in section two, social services have a duty to carry out an assessment of need for children aged 14 and over with a statement of special educational need if it appears that they are likely to need input from the adult social services team. If the young person meets the service's local eligibility criteria, services must be provided from the age of 18. The Valuing People Support Team (2003) suggests that services should be agreed and put in place before the young persons stops receiving support from children's social services, although in reality this may be difficult due to age-limited responsibilities of different agencies.
As outlined in section two, many children with learning difficulties will be receiving health care support from a community child health team and from one or more hospital specialists. The main issues relating to the role and responsibilities of health care staff at transition have already been covered. To summarise:
- Health professionals involved in the management and care of the young person should provide advice towards transition plans in writing.
- They should attend the transition review meeting in Year 9 where possible or send a report if they cannot attend.
- They should advise on the services that are likely to be required and should discuss the transfer to adult health care services with the young person, their parents and their GP.
- They should facilitate any referrals and transfer of records, subject to informed consent and should liaise with Connexions (Ward et al, 2003c).