THE JOINT PERSON-CENTERED TRANSITIONS PROJECT

Northumberland families, Northumberland County Council and the Community Business Unit of Northumbria Healthcare NHS Foundation Trust (Council delegated Adult Care responsibilities)

2011-2012

Evaluation completed by

PIPPA KENDALL [Chartered Educational Psychologist]

OCTOBER 2012

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Executive Summary All young people say that they want the same outcomes for their adult lives (Green et al 2007). However, for some young people, such as those who have a special educational need or a disability, successful transition to adulthood can be much harder to achieve and sustain. Recent statistics confirm that this is currently the experience of young people with additional needs in Northumberland. The government Green Paper Support and aspiration: a new approach to special educational needs and disability (DfE 2011) stated that opportunities for this population “fall short of what they need in order to make a successful transition to adult life” (p80), and identified well coordinated, person-centred transition planning with children, young people and their families as one important factor that makes a difference to young peoples’ futures. The person-centred approach is a way of working together that aims to:

Place people at the centre of making decisions about their own futures

Seek creative and effective possible solutions

Remove barriers so that people can successfully achieve what they aspire to Evaluation of the Joint Person-Centred Transitions Project’s activities shows that, by working together, Northumberland families, Northumberland County Council and the Community Business Unit of Northumbria Healthcare NHS Foundation Trust (Council delegated Adult Care responsibilities) have developed an innovative person-centred approach to transition planning to support vulnerable young people moving into adulthood. The approach complements the operation of other FACT teams, partners and stakeholder organisations that provide support to those with long term or on-going additional needs and requirements. It is very much in line with the wider visions and aims of both the Council and the Trust during this period of national and local austerity. In addition, it is also in tune with the research findings currently being published for the combined Education, Health and Social Care Plan (EHC Plan) which will be required for all children and young people with additional needs aged 0-25 years by 2014 (DfE May 2012; www.preparingforadulthood.org.uk). Results from the project showed how Northumberland can develop a future EHC Plan format and transition process that is underpinned and driven by person-centred principles. Learning from the project indicated that the process is likely to be most effective when its design is both flexible enough to be adaptable to individual needs, as well as comprehensively embedded across the local authority. Strategic planning and support across settings, the local authority and the NHS Trust was also recognised as vital, as it is difficult for a setting such as a school or Care Team to work independently with this approach and achieve best outcomes. Some costs are likely to be incurred, such as for training, on-going evaluation, and to fully involve the person’s key support group, but the overall view was that these costs can be limited when organisational changes are in place and everyone becomes familiar with the process. The approach also contributes value-added potential. Ensuring that all young people and their families had opportunities to experience and develop ideas about possible positive futures was also found to be a very important factor. Feedback, representative of the range of families and support professionals who took part in the project’s activities, showed overwhelming support for the immediate benefits of the approach and enthusiasm for developing it countywide in the future. Outcomes from this project therefore provide families, individual settings, the Trust and the local authority with valuable information and innovative strategies as they work toward putting the 2014 legislation changes in place and improving the outcomes for young people with additional needs.

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Background Description of the ‘person-centred approach’ This is a way of working together that aims to:

place people at the centre of making decisions about their own futures;

seek creative and effective possible solutions;

remove barriers so that people can successfully achieve what they aspire to. The approach includes a range of information-gathering activities, and also can be used to develop person-centred formats for meetings that review children’s progress and plan for their futures, such as a Statement of Special Educational Needs, Looked After Children’s Review, and Transition Plans. All person-centred activities should include the following five core principles:

The person should understand that their views are as important as everyone else’s, in what ever way they are expressed;

The person should understand the process of the activity in which they are involved;

The activity should be as accessible and user friendly as is practical to achieve;

The person should have a realistic understanding of the remit of the activity and what decisions their views can impact on;

The person should be given information about the outcome of any activity, in a manner that is meaningful to them.

When these principles are properly in place, all person-centred activities have a positive, informal and inclusive ethos. In addition, activities can involve a range of media and so respond to the different communication styles and preferences of everyone involved, and the skills and resources available in each setting. Reviews and plans are led by trained facilitators, who have the responsibility to ensure that everyone feels confident to take part and their voice is heard and recorded. The person who requires additional support attends, alongside a small group of key people who know the person closely. This group may include parents/carers, other family members, and school, care and support services staff. Accessibility, transparency and trust in reviews and plans are also promoted by putting all information on wall posters so that everyone can see and contribute to what is presented, discussed and recorded – this may be visual (photographs, video, drawing, etc.) as well as written. This information forms the minutes of the meeting, and is drawn on to agree plans for future actions. In this way, creative discussion and planning is maximised, and it promotes the person’s best chances to achieve their aspirations for the future.

Importantly, the approach also provides a mechanism by which information about individuals’ needs, and the resources that can provide effective outcomes for them, can be used to inform organisational change and commissioning.

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The national picture The person-centred approach was initially introduced in the UK to support disabled adults to achieve successful lives in their community (DoH 2001). It was pioneered by Helen Sanderson Associates [www.helensandersonassociates.org.uk]. A major UK evaluation of person-centred planning (P-CP) with disabled adults concluded, “P-CP, while being largely cost neutral, is both efficacious and effective in improving the life experiences of people with learning disabilities“(Robertson et al 2007 p.vii). The approach has now become a key framework in progressing the wider personalisation movement (HM Government 2007), such as making available personal budgets and direct payments for adults requiring additional support from Adult Health and Social Care Services. During this time, there has also been a focus on developing children’s and young peoples’ rights to participate in making choices about their own lives (e.g. UNICEF 1989; DfES 2001; DfES 2004). As part of this agenda, the Aiming High Transition Support Programme (Council for Disabled Children 2011) was introduced to promote better outcomes for disabled young people when they moved from receiving additional support via Children’s Services to Adults’ Services1. Transition for any young person can be a difficult and disruptive time, but for young people with additional needs it can be a fluid and complex process spread out over a number of years, with transitions in education, health and adult social care occurring at different times and with varying criteria. Evaluation of the Transition Support Programme reported that the use of the person-centred approach had the potential to successfully engage young people and their families in active decision-making, and also to influence the wider systems change of organisations. Both these factors have been noted as central to successful transition to adulthood, including improved opportunities to enter training and employment (Green et al 2007). In response to this evidence, the government Green Paper Support and aspiration: a new approach to special educational needs and disability (DfE 2011) endorsed the use of the person-centred approach with families. The Green Paper also proposed to give every child and young person aged 0-25 years with additional needs a combined Education, Health and Care (EHC) Plan, and the option of a personal budget by 2014. Most recently, current findings being published by Pathfinder local authorities researching best practice for the 2014 changes indicate that the person-centred approach is likely to underpin the design of the proposed EHC Plan (www.preparingforadulthood.org.uk September 2012). The Northumberland picture

Despite a range of interventions to support children and young people in Northumberland, there remains significant inequality in achievement in early adult life for more vulnerable groups in comparison with their whole peer group. For example, the most recent data on outcomes for 16 – 19 year olds not in education, employment or training (NEET) in Northumberland remain similar to the national UK picture (Igen 2010):

Those with contact with Youth Offending Service: 3.5 x more likely to become NEET than the whole group • Those with a learning difficulty or disability: 2.5 x more likely NEET • Those looked after in care: 5.0 x more likely NEET

1 The use of ‘disabled young people’ here includes all children and young people who have a Statement of Special Educational Needs

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Data also shows that these gaps are likely to widen as adulthood progresses. Anecdotal evidence, recently given by Northumberland families with a young person with additional needs, showed transition to be a confusing and sometimes distressing time and likely to disadvantage the young person in achieving their future aspirations (reported by the Disabled Children’s Team). Some children and young people said they made little contribution to decision-making and reviews, or that they felt disempowered by established processes that were dominated by professionals. Families did not consider existing systems holistic in looking at the overall needs, and the young person’s aspirations could be overlooked or disregarded if they did not fit into already available resources. The reliance on paper formats of written text was also recognised as a barrier to some people. In response to this feedback and the relatively poor outcomes for vulnerable young people, the Person-Centred Planning Team (Adult Services), Connexions, the Disabled Children’s Team, and Psychological Services worked together to introduce the person-centred approach in Northumberland, and to develop a coordinated protocol and pathway for transition to adulthood. As a result, fragmented pockets of good practice became established within the county, such as person-centred Transition Plans carried out and early versions of person-centred Looked After Children Review and SEN Statement Review formats being designed and trialled. However, the number of families who participated remained very limited. Families who took part in these early pilots very positively welcomed the person-centred approach to reviews and plans. In practice, however, a number of difficulties were experienced. Firstly, there were capacity issues for support services and so larger scale delivery was not sustainable using current practice. Secondly, take up by other support services and schools was slow and sometimes resistant. Evaluation of person-centred Looked After Children Reviews, completed by the Disabled Children’s team with schools, identified a number of further difficulties. These included: the additional time it took to plan and complete the reviews using the original person-centred planning model developed for adults, the need for costly staff training to develop facilitation and visual recording skills, and the duplication of paperwork. Finally, unfortunately, progress overall was also curtailed due to county budget reductions, loss of staff, and reorganisation of support services during 2010-11. In March 2011, it was agreed by Northumberland County Council and the Community Business Unit of Northumbria Healthcare NHS Foundation Trust (Council delegated Adult Care responsibilities) to complete the person-centred protocol and pathway for transition to adulthood. A £30,000 budget was earmarked to fund the Joint Person-Centred Transitions Project. In addition, Pippa Kendall (Chartered Educational Psychologist) agreed to contribute relevant findings from her research activity toward completing her Applied Educational Psychology Doctorate (Newcastle University) to the overall evaluation of the project (unfunded). Also during 2011, Northumberland County Council applied to become a Pathfinder authority for the SEND Green Paper (DfE 2011) but was not successful, and therefore did not receive additional government funds to work toward developing and promoting the changes to be implemented in 2014 as outlined above.

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The challenge for the Joint Person-Centred Transitions Project Drawing on the evidence outlined above, the challenge was to create a more inclusive, effective and sustainable transition process to adulthood for young people with a range of additional needs that not only achieved the outcomes all parties required but was also underpinned and driven by person-centred principles. This needed to be achieved at a time of significant reductions in Local Authority and Health Trust budgets and resources and wide-scale re-organisation as well as rapid legislation changes to comply with. The aims of the project therefore needed to be both ambitious and innovative, whilst building on the pockets of good practice already established across the county and taking account of planned future changes in government policy and legislation. It required the development of a comprehensive Northumberland model, which would ensure that a high standard of person-centred practice could be replicated in and embedded across all contexts through significant systems changes within organisations.

Description of the work of the Joint Person-Centred Transitions Project Lead Officers: Ann Brown, Valuing People Coordinator Community Business Unit

Northumbria Healthcare NHS Foundation Trust Ann.brown@nct.nhs.uk Steve Ingham, Manager Disabled Children’s Service until 2011 Former employee - Northumberland County Council Samantha Clarke, Chief Executive Inclusion North Samantha@inclusionnorth.org

Project workers: Haltwhistle Film Project (Film and IT Specialists) haltwhistlefp@btinternet.com Pippa Kendall, Chartered Educational Psychologist

(Employed by Northumberland Council as Senior Educational Psychologist until March 2010) Pippa.Kendall@yahoo.com

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Project Aims:

To develop a smooth and coherent transition pathway for young people who require on-going additional support from Children’s and Adults’ Services, where all person-centred activities are linked and provide the central approach and drive for planning and reviewing:

1) Development of core person-centred principles and practice frameworks which can be applied to any review or planning setting across all ages to give a

continuity of approach and standard of involvement;

2) Identification of relevant initial and advanced multi media skills, which can be used to promote staff skills so as to increase accessibility and speed up completion times of reviews and plans in any context;

3) Development of a practical and deliverable person-centred SEN Statement Review process that could be replicable across all schools.

Project Actions: Actions were split into three development areas to reflect each project aim, working at a number of levels during the project with children, young people and their families, schools, support services, voluntary agencies, and other funders: Project Action (1):

i. Liaising and consulting with parents/carers, Northumbria Healthcare NHS Foundation Trust Person Centred Planning team, Northumberland County Council SEN department and Support Service colleagues in both Children's and Adults' Services, Connexions and specialist Further Education providers to meet for a defined number of meetings to agree core person-centred principles and practice frameworks that could be adapted to suit different ages, contexts and legal requirements. Reference also made to relevant research and practice.

ii. An action research pilot, developing person-centred Care Plan Review formats with young people who have already left school and older adults who require the support of Adult Social Care Services, to be carried out by the Disabled Children’s Team and the Learning Disability Community Team in West Northumberland. Care Plan Review formats to be adapted to the agreed person-centred principles and trialled, and to be replicable with all adults requiring additional support from Adults’ Services.

Project Action (2):

i. Training and support by IT, film and animation specialists with the Person-Centred Planning Team (Adults’ Services), over a period of one year, to develop multi-media resources and skills.

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Project Action (3):

i. Completing an action research pilot to support two Northumberland special schools (one for pupils with Learning Disabilities and Difficulties [LDD] and one for young people with social, emotional and behavioural difficulties [SEBD]) to develop and embed sustainable, whole-school person-centred practice, including combined person-centred SEN statement and transition reviews for each pupil. (Limited budget and time did not allow additional work with a mainstream school as initially planned);

ii. Liaising and consulting with families, Children’s Services SEN Section, schools and support services to agree and pilot changes in procedures and paperwork linked to the SEN Statement and Transition process, so as to reflect the person-centred approach whilst at the same time complying with legislation, as well as families’, Council’s, support services’ and schools’ requirements.

Results of the Evaluation of Project Actions All the above project actions were completed. Short-term evaluation of each project action is given below in turn, followed by discussion of key themes and issues that emerge. A summary of suggestions for future actions completes each section. Everyone who was invited to give feedback gave their permission verbally for their contributions to be included in this evaluation. They were provided with information about how this information would be used, and were assured that as far as possible (given that numbers of respondents were small) that their contributions would be anonymous. The data collected for each project action was transcribed, collated and analysed using thematic analysis (Braun and Clarke 2006) where appropriate. This approach has allowed key themes emerging across all the data to be noted and used to inform discussion. Insufficient feedback was available from some activities prohibiting more detailed analysis, and so this information has been reported directly. Analysis and discussion for Project Action (3) includes relevant additional evidence collected at the SEBD special school and analysed as part of Pippa Kendall’s Applied Educational Psychology Doctorate study. Results of Project Action (1) Data collection Writing core principles

Information was taken from the minutes taken as an agreed account of relevant meetings. Adult Social Care Services and Disabled Children’s Team

A brief questionnaire was completed and returned by families who took part in a person-centred Care Plan Review.

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Data analysis and discussion Five core person-centred principles were agreed (see Appendix 1). This discussion was informed by reference to relevant research literature, and by sharing experience of current practice and legal requirements of a range of review and planning formats currently used across Children’s and Adults’ Services. A generic audit chart was also constructed to support the development of any review or planning framework to include a person-centred format (see Appendix 2). The Northumberland Care Plan Review design for adults with additional needs was adapted for different settings using the five core principles (see Appendices 3, 4 and 5), and this revised person-centred format was trialled by Adult Care and the Disabled Children’s Team with a small number of adult clients and young people who are looked after in public care. Positive responses from participants showed that changing to a person-centred Care Plan Review format:

Provided a more interactive and comfortable environment for participants. It was easier to join in, to contribute views on much wider topics about the person’s current situation, and to think “out of the box” about the future

Allowed more discussion of issues that would not have been raised or discussed if the usual format was used

Focused more on relevant outcomes to support the person to achieve their aspirations

Allowed personalisation of the process whilst still maintaining the core person-centred principles and Care Plan Review format e.g. one family hosting their Care Plan Review at home felt more comfortable to have contributions recorded by hand written notes rather than use a flip chart, as this made them feel less self-conscious

Increased attention on thinking about and planning creatively for the person’s future, rather than mainly discussing the past as in the old format

Provided more accessible paperwork, such as minutes of the reviews

Benefitted from time given to support participants to prepare for the review

Participants’ responses concerned with on-going challenges showed that:

Comprehensive change across all steps of the process to provide additional support for peoples’ social care needs is needed, so as to ensure that it is consistent, manageable and accessible. This includes the need to review of all relevant supporting paper work

Introductory training is required for facilitators, so as to support them to develop the skills required to work using a person-centred approach, including basic multi-media training

Evaluation of the process needs to be on going, so as to ensure that core person-centred principles are consistently used. Although feedback was limited, this small pilot showed that adult clients, families, young people and staff welcomed the person-centred format. Evidence confirms that the five core principles were a helpful guide to changing current practice with working together with adults who are supported by Adults’ Services

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and the Disabled Children’s Team. The results of this trial will be likely to support the development of the EHC Plans in a person-centred proposed to be introduced in 2014 (DfE 2012): In summary, evidence from this section of the pilot project indicates a number of possible ways forward to develop core person-centred principles and practice frameworks which can be applied to any review or planning setting across all ages to give a continuity of approach and standard of involvement. These include, as part of a multi-agency strategic plan, to:

Further trial and refine the person-centred Care Plan Review format and relevant paperwork in anticipation of the introduction of the combined EHC Plan in 2014

Develop a programme for initial training and on-going support and evaluation, which will also include basic multi-media skills

Complete the full development of a 0-25 years Northumberland transition pathway, with reference to the current findings from this pilot project and also from Pathfinder local authorities who have a remit for developing the proposed EHC Plan format

Project Action (2) Data collection Person-centred Planning Team

A brief postal questionnaire was completed and returned by 3 out of 4 team members (2 further team members had left the team before the end of the project, and so their views were not sought)

[Statistics concerning the numbers of referrals of young people to the team, and person-centred plans completed, were not available at the time of writing.]

IT, Film and Animation Specialists

A brief postal questionnaire was completed and returned by 2 out of 2 team members. Data analysis and discussion Everyone who took part found the multi-media training very useful. However, skill-building and skill-maintenance was shown to be quite a complex area, and a number of issues were raised:

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Positive responses from participants showed that additional IT, film and animation training:

Significantly improved the practical skills of the PCP Team members, across a range of skills

Significantly improved each member’s grasp of the multi-media process, such as progression in expressing ideas more clearly, simply and imaginatively, and adopting a problem solving approach

“[They are] beginning to understand that stories are often not best told in a strictly linear way…and started to explore editing more creatively i.e. to express the ideas more clearly, and went beyond simple worrying about ‘How To’? They became problem solvers... everyone started to understand how much information can be put in a very short space of time” [IT, Film and Animation Specialists].

Enabled each individual to progress at their own rate and in their own style, due to the personalised focus of the training and also time set aside to train, practice and share ideas

“Having tuition from experts in the field was a huge help….Being allowed time to practice these skills. If you do not use them all the time you lose them” [PCP Team member].

Significantly empowered and raised the confidence of team members to use existing and newly gained skills. “Confidence to work on with and add in effects…Being able to do, as well as being instructed whilst sitting in front of the computer.” [PCP Team member].

Comments concerning on-going challenges showed that:

Building up and maintaining relevant multi-media skills which can complete plans in a shorter timescale without technical hitches is a big job. This requires funding, on-going protected time, and expert support

NHS Trust IT policy requirements limit the information that is permissible to distribute, and therefore restricts the team’s ability to use their multi-media plans with families regardless of the level of their own skills e.g. unable to burn information on to a DVD disc

“Because we cannot use the programs effectively in the work environment I feel this has impinged on the effectiveness of the training.” [PCP Team member].

As a result of the positive approach taken by both the PCP Team and the IT, Film and Animation trainers, significant strides were made in building the multi-media skills and confidence of the team members. However, experience showed that continuing to maintain and add to their repertoire of skills, and putting these multi-media skills into practice, is likely to prove quite a demanding task for the team. It was one the project’s aims that well-rehearsed, appropriate skills and knowledge would reduce the time to produce a plan. Unfortunately no final figures were submitted here, but one team member made the point that improved multi-media communication could sometimes prove more time consuming to include into person-centred plans. This raises the issue of the need to ensure that expectations of different parties take a realistic account of the balance between timeliness and appropriate standards of communication. Experience has also shown that the IT environment in which the team currently works does not always support the team members’ needs to complete actions in the quickest or simplest way or to take advantage in the development of new technology and software and it can prevent them from accessing appropriate programmes which could support the speed of their work.

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In summary, evidence from this section of the pilot project indicates a number of possible ways forward to develop multi media as an accessible and practical tool in reviews and planning that will increase accessibility and speed up completion times. These include to:

Develop person-centred formats that make best use of current digital and social media where appropriate for the context, but to ensure that each setting can adapt and personalise the format to its own needs and preferences and skill-level

Identify a core range of basic multi-media skills and resources which will be required by all facilitators in any context to ensure that all person-centred activities’ are accessible, and to provide these as part of initial training programme for all new facilitators

Identify a more advanced range of multi-media skills and resources which will be required by facilitators in some contexts to ensure accessibility, and to provide these as part of on-going training programmes

Develop a varied programme of approaches to training for both core and more advanced multi-media skills e.g. the team and film makers working together with clients so as to help the team apply what they have learnt in situ thus producing film and animation which would better express and meet the clients' needs; short ‘refresher’ courses; access to telephone advice; opportunities for peer discussion, and sharing of skills and support

Continue to discuss how to maximise the development of a supportive IT environment with the NHS and local authority IT departments Project action (3) Data collection LDD Special School:

Semi-structured telephone interviews were held with six parents/carers who attended their child’s SEN Statement Review with their child, which was their first time using the person-centred review format (see Appendix 5). Children and young people were in classes Years 3 - 10. Written notes recorded key statements during the conversations

One group semi-structured discussion was held with three assistant head teachers. Each teacher had observed PK facilitate two reviews, and subsequently they each facilitated two reviews themselves using the person-centred format with support from PK. This discussion was audio-recorded and transcribed

[N.B. It was not possible to gain feedback from pupils taking part in their SEN Statement Reviews on this occasion due to lack of capacity in this project.]

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SEBD Special School:

Semi-structured telephone interviews were held with six parents/carers who attended their child’s SEN Statement Review with their child, which was their first time using the person-centred format. Young people were in classes Years 7 - 11. Written notes recorded key statements spoken during the conversations

Two 1:1 face-to-face semi-structured discussions were held with the Special Educational Needs Coordinator (SENCo) and teacher who had observed the researcher facilitate six reviews using the person-centred format. This discussion was audio-recorded and transcribed

One group face-to-face semi-structured discussion with the SENC0 who had facilitated six Year 7 reviews, and the class tutor who had contributed to these reviews. These discussions were audio-recorded and transcribed

One group face-to-face semi-structured discussion with the SENC0 who had facilitated six Year 11 reviews, and the class tutor who had contributed to these reviews. This discussion was audio-recorded and transcribed

Three semi-structured telephone interviews with support service staff (social care, Child and Adolescent Mental Health Service, school welfare). Written notes recorded key statements spoken during the conversations

Six Year 7 boys wrote a leaflet giving their views on their experience of taking part in their person-centred SEN Statement review (see Appendix 7)

A short animated film was made by 2 Year 7 boys on their experience of taking part in their SEN Statement review (see excerpts illustrated in the Executive Summary)

Children’s Services SEN section:

A brief semi-structured postal questionnaire was completed and returned by one SEN officer. Data analysis and discussion There can be no doubt that that everyone involved in person-centred SEN Statement Reviews during the pilot project found the experience to be useful, with strong recommendation that this format should be widely adopted across the local authority. As a result, both the LDD and SEBD special schools have been successful in embedding the approach school-wide. By the end of academic year 2012/13 about 200 children and young people aged 4 – 19 years with a wide range of additional needs and their families will have experienced the revised format at least once. A person-centred SEN Statement Review format was designed (see Appendix 5) using the principles and audit chart (see Appendices 1 and 2). An example of the format reproduced in the school’s preferred format as a hand-drawn wall poster is given in Appendix 6. Versions of this format were used in all reviews evaluate here. Positive responses from participants showed that they thought that changing to using the person-centred format for SEN Statement reviews:

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Underlined the importance of the contributions that parents/carers and pupils make at their reviews “My son [aged 8 years] took to it. It was nice to have him in the room; he can become a ‘topic’ rather than a human in discussions, but when someone is there it’s heart felt” [Parent].

Enabled people to feel more relaxed, willing and confident to take part, and to speak out their views and ideas “I’ve seen kids ‘badgered’ into things before, and then they are unhappy because its turned out to be a mundane existence – no one asked their views; this way does” [Parent].

Constructed a more positive but still realistic, view of the child or young person “It allowed the ‘elephants in the room’ to be talked about, but still be positive” [Support service staff].

Encouraged a more hopeful future for the child or young person “It’s hard work. You have a standard for the other children [siblings] before you start, but with [Pupil] the expectations are not so clear. It’s having it realistic, so as he can mature and grow from a boy to a man. He has got his path coming, and we managed to capture that.” [Parent].

Provided more detailed, accessible and holistic information that fitted all parties’ requirements, which could be used for well-planned transitions “It gave me more information for my work. It’s helpful to have teachers’ comments – we rarely get this – it’s a clever bit of work” [Support service staff].

Led to better relationships between everyone taking part “It was a new experience. I thought it was a good way to get everyone’s points of view on board…it can be the High and Mighty vs. families awestruck by people in authority; this is more relaxed. [Parent].

Increased parents/carers’ intentions to attend future reviews

Led to people taking more responsibility and being more motivated to complete actions as planned and on time

Positively influenced subsequent behaviour and communication more widely in the classroom, at home and in school after the reviews were over “It’s so good for [Pupil aged 15 years] to see and hear this – not just the bad stuff – he can get so down about the future, but this reminds him of ALL the things he can do. And now I’ve got more ideas about what to talk to him about to help him at home” [Parent]

Combined some SEN meetings, and so reduced the number of meetings required e.g. combined the SEN Statement Reviews and Transition Reviews (for Year 9 pupils and above)

Allowed more accessible paperwork to be used to record the review and re-draft the Statement of SEN, that fitted all requirements but was less onerous to complete

“This approach fits in with paperwork we have to complete very well. It provides the holistic evidence that we need. It’s likely to cut down the time we take to write reports” [Support Service staff] “[SEN Officer] has been most impressed … they contain all the information that we need to review the statement and are clearly set out. I know the admin staff that do all the processing like to see a photo, so that they can put a face to names that they deal with, but never see. [SEN Officer]

Brought benefits that can outweigh the effort, increased resources and disruption incurred in the changeover of formats “I’m still very positive about rolling-out child-centred reviews across the school. It’s still do-able in terms of money, and the cost/benefit is positive. It’s still ‘watch-this-space’ however, until the whole staff team have taken part, as some may be less convinced by the process. The current model is workable in school, but the facilitation role is not to be underestimated. [Head Teacher]

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Comments voicing on-going challenges showed that participants thought that embedding the person-centred approach successfully:

Needed additional resources to enable ALL parents/carers to take part in their child’s review so as to: inform parents/carers about the purpose and importance of attending their child’s reviews; support parents/carers to prepare for their review where requested; provide a budget to support their transport costs to travel from anywhere across the county

Was sometimes more tiring and emotional to be involved in, which facilitators needed to feel confident to manage

Required additional resources for: initial training for: school and support services staff; additional training for facilitators; on-going evaluation to maintain effective person-centred practice in line with the agreed core principles; pre-review preparation support for children, young people and parents/carers

Needed time to embed: everyone who attends a review needs to become familiar with the principles and practice of the approach; facilitators require time to practice; whole-school systems can need to be revised to accommodate the approach

Needed on-going commitment and involvement from the school’s senior management and also the local authority Schools are very busy places with many, sometimes conflicting, demands and agendas. They have little spare capacity. Recommending a new ‘good idea’ is not sufficient, particularly one that is still in the process of development. Schools need to be convinced that their commitment to any change will bring relevant and valued benefits. The pilot therefore enabled a dual opportunity: firstly, guided by the five core person-centred core principles, to develop a generalizable model of a person-centred SEN Statement review process and format that could be useable and useful within any school context; and, secondly, at the same time it allowed each pilot school to try out the approach and to develop person-centred SEN systems to suit their own unique context. One important achievement, in terms of generalizable development, has been to design a person-centred SEN Statement review format that can meet the challenge of completing a review within one hour. This format also includes all the information relevant to the additional Transition Review that is also legally required for all young people with a SEN Statement from Year 9 upwards, thus reducing the number of formal meetings necessary. A second achievement has been to work together with the LA to revise the county hall paperwork. It proved quite complex to align a range of legal and LA requirements for formal review of a SEN Statement, and at the same time to embed core person-centred principles and practice. Both these developments were key to the two schools and the Children’s Services SEN Section accepting that the person-centred approach has the potential to improve outcomes, to be responsive to legal requirements, and, not least, to shape a manageable process. These two outcomes also contribute useful evidence to support the development of a Northumberland person-centred EHC Plan format when legislation is introduced in 2014. In terms of individual school development, each pilot school has evolved equally appropriate but rather different person-centred SEN systems, such as how they record and process review information, roles and responsibilities delegated to different staff members, different venues for reviews, and one school has slightly tweaked the review format itself as this worked better for them. Any future training programme will therefore need to support each setting to develop personalized systems and practice that apply the core person-centred principles to suit their own context.

Feedback sought at different stages during the pilot also gave helpful information about what it takes to successfully embed the person-centred approach. Although the approach was universally popular once participants had experience of it, it did also incur costs: it required effort, time, demands on the school

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budget, and sometimes determined persistence, to make the change-over from previous practice. For some participants the cost was more emotional. Many respondents noted that initially they had some anxiety about taking part in an unfamiliar review. Some school staff, who took on the role of facilitator, said it took courage to tackle new skills in a rather public arena. Other staff, less familiar with the ideas of children’s and young peoples’ participation, initially described it as being somewhat of a “jump in the dark’” which could challenge their core beliefs:

“I was a little sceptical about it, you know. Honestly I was thinking is it going to be worth it! And I came out and I said straight away ‘That is spot on. That is so, so good. This is how it should have always been. They get something out of it, the parents do, the school does’.” [Teacher]

Experience showed that with familiarity much of this worry dissipated quite quickly. Some increased costs remained, however. For example, both schools said that the person-centred review model was more rigorous and comprehensive than their previous practice and therefore did inevitably take longer than before although not necessarily outside of the intended ‘one hour watershed’. Facilitators also said that they found the person-centred model more tiring as well as emotional to be part of. However, there was evidence that the person-centred approach also added value, such as through improved relationships and more effective action plans. It could therefore be argued that potentially it can balance out increased costs in the longer term. Overall the two schools’ response to this complex cost/benefit issue was similar. They took account of both the children’s rights argument and also acknowledged early evidence they were already finding improved outcomes for children, young people and their families, in addition to considering straight financial cost implications. This was best summed up by one senior teacher’s comment when it became clear that it was no longer realistic to complete two SEN Statement reviews in one evening at the end of the school day:

“We’ve got to think of a way round it {the capacity and timetabling problem]…There are too many good things that come out of it [person-centred approach] to say ‘No!’” [Senior teacher]

This also illustrates how whole-school level changes are necessary to embed the approach successfully. Commitment and leadership from the senior management team was vital in both schools to identify and put these changes in place, as well as to sustain the vision to properly apply the core person-centred principles in practice. As noted above, experience also showed, unsurprisingly, that the most successful reviews occurred when both the child or young person and their parents/carers participated. Although it was possible to complete a person-centred formatted review without one or both of them – an important point as schools sometimes have to do this as they must complete it within a legal timescale - the discussion was significantly impoverished. It not only lacked information about out-of-school experiences, but it was also harder for those present to think and plan creatively as there were fewer contributions to share and reflect on together. Most children and young people attended their pilot reviews, and appeared relaxed and confident to contribute (although this feedback is largely reported by adults due to the project’s limited resources). Over time, both schools increasingly designed a range of whole class-based activities linked to the National Curriculum to help each child or young person to prepare for their review. This was an example of how creative, positive

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thinking by staff could reduce potential extra costs. Reviews worked best when young people and their families had had prior opportunities to develop their ideas about possible positive futures, which they could then talk about at the review. It will therefore be important to ensure that aspirational experiences are built in for everyone. Fewer parents/carers attended their child’s review, however, continuing a long-term trend reported in both schools. Costly and long journeys, child-care responsibilities, disengagement, and schools’ difficulties with being able to timetable flexibly were some of the reasons put forward. Reversing this pattern presents a major challenge to both schools, but a number of parents did indicate in their feedback that, if future reviews are person-centred, then they would be more likely to come along and take part. This issue will therefore be an important factor to include in their longer-term evaluations. It will be helpful, therefore, to build in time to help people to raise and explore this issue in any future initial training programmes. Successful reviews were also those attended by other people with close links with the child or young person, including other family members, school staff and support service staff. This points to the need for wider local authority involvement at strategic level to plan for and promote the person-centred approach beyond schools, so as to include everyone working to support children and young people who have an SEN Statement and to maintain best practice. As increasing numbers of person-centred reviews were completed, both schools started to identify themes shared across individual reviews, and used this information to inform their whole-school planning. Sometimes this information was known but hadn’t been openly spoken about as it was difficult to talk about with colleagues, such as relationships within in specific Year groups. The person-centred review format not only provided a safe context to in which to speak out, but also the collated information provided a mandate to act. Other information was new and sometimes surprising or counterintuitive, and thus stimulated original and creative thinking and planning. For example, the impact of some young peoples’ smoking addiction on reading skills became obvious in one school, and thus planning for cessation support as well as additional literacy support classes was put in place. This potential for novel data collection, and planning and actions informed by what really works for children and young people and their families could be developed on a much larger scale with the involvement of more schools and the local authority. Unfortunately limited resources did not allow much time to focus in this section of the project on the developing the accessibility of person-centred SEN Statement reviews. A number of participants brought photographs, video and drawings to illustrate their views, which was agreed to be very helpful. Both schools experimented with ways of recording information on the wall poster during a review. Ideas included using an electronic smart board in one school, and writing onto a wipe-clean laminated poster and then digitally photographing the poster. This could then be more easily emailed to their administrative colleagues who then typed the information into the SEN Statement review. The short animation film that was made with two Year 7 boys has also provided some very useful evidence of how this format can be used during all stages of a review:

“Animation continues to be a vital tool for issue-based work, allowing conversation both about the subject in question itself, and through the process of decision-making during the work…It [is] a useful tool for school change and personal development… Individual children responded well to using film and animation as a way to conduct conversations and express ideas…Parents/families need a short film explaining the process to act as a focus for discussion prior to the process beginning. This would encourage the families to talk about it by themselves, without professionals present.” [IT, Film and Animation Specialist]

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In the future, facilitators’ multi-media skills and exploring creative ways that participants can communicate their experiences and ideas will be important areas of development. In summary, evidence from this section of the pilot project indicates a number of ways forward to support a countywide strategic plan working toward implementing person-centred EHC Plans in 2014 to:

Use the 5 person-centred principles to inform the development of the future Northumberland EHC Plan format

Use evidence from this pilot to develop an initial training programme to support schools and support services to work with the future Northumberland person-centred EHC format

Develop an ongoing programme of training, auditing and support to build ideas, resources and skills to ensure that all future Northumberland EHC Plans are properly underpinned and driven by person-centred principles long term

Make accessible information available to explain the person-centred approach underpinning the EHC Plan to everyone who may want to attend a review

Revise local authority and Trust systems so as to be able to collate themes emerging across individual EHC Plans, and use this information to inform county-wide planning and commissioning

Concluding summary for the Joint Person-Centred Transitions Project The Joint Person-Centred Transitions Project has been fully completed, making a significant contribution toward progressing its three key aims. The project has built on what has already been learned from existing pockets of good practice established across the county, taking account of the vision and aims of both the Council and the Trust. However, the project has also coincided with a period of significant national and local change, and has taken account of these changes within its work. This includes the introduction of proposed government legislation to implement a new approach to supporting children and young people 0-25 years with additional needs to be in place by 2014 (DfE 2011; DfE 2012). The project has also been carried out during a time of national austerity, and this has impacted on families, the local authority and the Trust. Cuts in public funding and rises in unemployment and living costs now mean more demand for fewer resources. As a result, the project has been very mindful as it has worked to explore the potential for change against this uncertain and unsettling backdrop.

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The project confirms that the five person-centred principles are likely to be a useful guide to help revise existing ways of working to support children and young people with additional needs across education, health and social care. It indicates that, with a shared person-centred approach underpinning how families and support services work together, a smooth and coherent transition pathway can be put in place for all Northumberland children and young people with additional needs as they grow up to adulthood. This would be likely to be closely in line with the proposed EHC Plan. Feedback from the project indicates a number of factors that can promote an effective person-centred transition model. Firstly, the process will need to be both flexible enough to allow it to respond to the needs of individual people and settings, as well as provide a generalizable format that can be embedded countywide. Secondly, it is also likely that there will be initial as well as on-going costs involved which would need to be budgeted for realistically. However, it has been shown that there is a complex ‘value for money’ equation involved here taking account of (a) the moral view of the right of all children and young people to be at the centre of making decisions that effect their lives, (b) the evidence that families say they prefer the person-centred way of working and that they want a more coherent transition process, and (c) the value-added contribution that the person-centred approach can make. These factors all need to be considered alongside financial calculations. There also needs to be a focus on developing core multi-media skills useable by all facilitators in any context, and on developing creative ways to support participants to communicate ideas and information. In addition, there is clear evidence that there needs to be a high-level strategic plan across the county to embed a person-centred transition model that maximises its benefits and makes it equally available to all children, young people and adults who receive additional support from Children’s and Adults’ Services. Attention to these factors would then not only provide a transition plan and process compliant with the new legislation for 0-25 year olds, but also extend the process for as long as a person requires additional support across their life. This project has shown that families and schools cannot do this by working alone. A strategic role should also include on-going evaluation and support to ensure that vision and best person-centred practice are maintained, so as to achieve better long-term outcomes such as improved employment for young people from vulnerable groups. In conclusion, it’s important to reflect on the hugely positive feedback and strength of feeling about the person-centred approach to transition by everyone who took part in this project. This is despite the fact that that their experience has coincided with procedures continuing to be in development. It also mirrors exactly the same commitment and enthusiasm of others with similar experience of the approach, documented more widely in the research literature (e.g. www.transitioninformationnetwork.org.uk). Northumberland County Council and the NHS Trust therefore currently have a great opportunity to use this mandate to explore innovative ways to successfully put changes in place during a time of national recession. One example could be to develop a social enterprise business structure in partnership with parents/carers and adults and young people who receive additional support to provide a powerful approach to training across the county as part of the implementation strategy for the proposed EHC Plan. New structures such as this properly place people at the centre of participating in decisions that effect their own lives, and would hopefully ensure that the new EHC Plan will remain underpinned and driven by the person-centred approach.

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References Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), p77-101. Council for Disabled Children. (2011). Information from the Aiming High for Disabled Children Transition Programme. London: National Children’s Bureau. DfE. (2011). Support and aspiration: a new approach to special educational needs and disability. www.education.gov.uk DfE. (2012). Draft legislation on Reform of provision for children and young people with Special Educational Needs. www.education.gov.uk DfES. (2003). Every Child Matters – Action for Change. www.gov.uk DfES. (2001). The Special Educational Needs: Code of Practice; www.education.gov.uk DfES. (2004). Removing Barriers to Achievement: the Government’s Strategy for SEN www.education.gov.uk DoH. (2001). Valuing people: a new strategy for learning disability for the 21st century - a White Paper. www.health.gov.uk Green, A. and White, R. (2007). Attachment to place, social networks, mobility and prospects of young people. Joseph Rowntree Foundation www.jrf.org.uk Hartlepool and Darlington Pathfinder Update (2012). www.preparingforadulthood.org.uk H. M. Government (2007). Putting People First. www.gov.uk Igen. (2010). Making a Difference in the Lives of Young People 2010 And Beyond: Locality Profile Information. www.northumberland.gov.uk Robertson, J., Emerson, E., Hatton, C., Elliott, J., McIntosh, B., Swift, P., Krinjen-Kemp, E., Towers, C., Romeo, R., Knapp, M., Sanderson, H., Routledge, M., Oakes, P. & Joyce, T. (2007). Person-centred planning: factors associated with successful outcomes for people with intellectual disabilities. Journal of Intellectual Disability research, 51(3), 232-242. www.transitioninformationnetwork.org.uk

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UNICEF. (1989). Convention on the Rights of the Child. www.unicef.org

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APPENDIX 1

Person Centred Review Core Principles Involving Clients in Reviews

Person centred approaches aim to help people achieve the lives that they aspire to. By taking into account what is important to the person, as well as what is important for them, it can help to successfully put into place what is possible for that individual and to remove barriers to achieving this.

We have developed 5 principles which can be applied to any review or meeting for each person in a range of statutory settings which focus on the outcomes experienced by disabled people, older persons and their families:

The person should understand that their views are as important as everyone else’s, in what ever way they are expressed;

The person should understand the process of reviews or meetings in which they are involved;

The meeting or review should be as accessible and user friendly as is practical to achieve;

The person should have a realistic understanding of the remit of the review and what decisions their views can impact on;

The person should be given information about the outcome of any review or meeting, in a manner that is meaningful to them.

Personal goals may be linked to policy goals but will be different for every person and across each setting. In applying these core principles, it may be helpful to consider the following:

Everyone has the capacity to contribute to finding solutions to issues in their lives

The person and their carers have unique knowledge and understanding about their lives to contribute

The problem is the problem, not the person

The sequence and timings that are needed to cover the relevant issues within the review are appropriate for the person

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APPENDIX 2: A GENERIC AUDIT CHART TO SUPPORT THE DEVELOPMENT OF ANY PERSON-CENTRED REVIEW OR PLANNING FRAMEWORK

Applying Person-Centred Principles

Before the Review/Plan During the Review/Plan After the Review/Plan

Your views are important – we want to know what you think

You are given time to prepare with support if you need it

You are asked who you suggest would be important to invite to your review

Consideration is given to how you are supported and prefer to express your views

You are offered an opportunity to talk about your goals and what is important for you in any plans

You can express your feelings about issues that are important to you

Your views are recorded in an appropriate way

Your views are recorded and presented in a way that gives them value and status

You understand the purpose and process of the meetings and reviews

You know in good time what we will be talking about

You know who has been invited, why they will attend, what their job is and what they will be talking about

You understand some of the words and phases that may be used

You know you can attend all or

You are introduced to everyone at the review, and they will explain why they are attending

You know who is facilitating your review

You know what order things will happen in the meeting, how it will start and end, and how long it will last

There is a clear process for your next review and when it will be held

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part of your meeting

You are comfortable and able to take part in your meetings and reviews

The meeting is organised at a time and place that you can attend

The room is prepared and set out to make the meeting as comfortable and welcoming as is practical

Everyone has an opportunity to say what they need to

The facilitator has checked everything that needs to be said has been

The meeting is positive and people feel motivated and better informed even if there are difficult issues

You have the opportunity to feedback how the review felt for you

You understand the remit of your review and what decisions your views can make a difference to and how

You understand the range of powers and influence the meeting has and what the limits are

You are given the opportunity to say how you would view future assessments, provision or changes in care

There is appropriate discussion about any issues for each type of review

You know how and when you can contribute to planning if this needs to be done outside the meeting

You will know what actions and You know what decisions and You are involved in planning any You know what decisions and

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outcomes will happen as a result of your review

actions were agreed previously and what they meant in your life

change

actions were agreed in your review in a way that you can understand

You know the timescales for any changes

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APPENDIX 3: DRAFT CARE PLAN REVIEW [ADULT]

WHAT WE LIKE AND ADMIRE

ABOUT…………….....?

WHO CAME:

…………………………………………………………………’s Review

Date………………………………………………

HOME

GOING WELL:

COULD BE BETTER:

HELPFUL STRATEGIES:

COMMUNITY AND WORK

GOING WELL:

NOT SO GOOD:

HELPFUL STRATEGIES:

NEXT STEPS

What? How? Who? When? Outcome?

WHAT’S IMPORTANT TO……………

NOW:

IN THE FUTURE:

HAVING FRIENDS, A SOCIAL LIFE

AND RELATIONSHIPS

GOING WELL:

COULD BE BETTER:

IDEAS TO THINK ABOUT:

KEEPING HEALTHY AND SAFE

HELPFUL STRATEGIES:

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APPENDIX 4: DRAFT CARE PLAN REVIEW [COLLEGE]

WHAT WE LIKE AND ADMIRE

ABOUT…………….....?

WHO CAME:

……………………………………………………………….’s Review

Date………………………………………………

HOME AND OUTSIDE

GOING WELL:

TRICKIER:

HELPFUL STRATEGIES:

COLLEGE

GOING WELL:

TRICKIER:

HELPFUL STRATEGIES:

NEXT STEPS

What? How? Who? When? Outcome?

WHAT’S IMPORTANT TO

………………..NOW?

WHAT’S IMPORTANT TO…………

IN THE FUTURE?

KEEPING HEALTHY AND SAFE

HELPFUL STRATEGIES:

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APPENDIX 5: DRAFT SEN STATEMENT REVIEW (0-19 YEARS)

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APPENDIX 6: EXAMPLE OF HAND-DRAWN WALL POSTER IN ONE SCHOOL’S SETTING PREPARED FOR A PERSON-CENTRED SEN STATEMENT REVIEW

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APPENDIX 7: YEAR 7 FEEDBACK LEAFLET ***to be scanned up