SEND Participation: Project Report

Shortland Palmer Consultancy

‘A strategy for the effective and meaningful participation of children and young people with special educational needs and disabilities’

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Acknowledgements

There are many people who have contributed greatly to this project. In particular we wish to thank Ken Harvey, Head of Service for Families with Disabled Children, and Central Bedfordshire Councils ‘Support and Aspiration’ Project Board for sponsoring this important piece of work.

With their support children and young people with special educational needs and disabilities within Central Bedfordshire have had the opportunity to express their views about how they will be involved in co-producing services in the future.

We also wish to extend our thanks to the professionals and practitioners who have been interviewed from Central Bedfordshire Council, and from Bedfordshire Clinical Commissioning Group.

The contributions and support of parents and carers has proven to be of great value to the success of this project, and has given us a fuller understanding of important factors to consider when working together. Thank you.

We recognise the important role that schools, colleges and other groups have in the lives of children and young people, and wish to thank the following for their time and support: Weatherfield Academy, Central Bedfordshire College, The Chiltern School, Samuel Whitbread Academy, Harlington Upper School, Families United Network, Outside-In and MENCAP; and a special thanks to the Leicester ‘Big Mouth’ forum for supporting the event on the 28th October 2014.

Finally we would like to express our thanks and appreciation to all of the children and young people who contributed their views and experiences to designing a strategy for their participation. Your enthusiasm about being involved is fantastic, and we hope that you will be able to build on this by actively participating in the development of services, affecting your lives now and in the future.

Shortland Palmer Consultancy

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Definitions

! SEND: Special Educational Needs and Disabilities

! Children: Children aged 0-16 with SEND

! Young People: Young people aged 17-25 with SEND

! Parents and Carers: Parents, or those with parental responsibility for children and young people with SEND

! Families: Families of children with SEND, and other family members

! VCS: Refers to the Voluntary and Community Sector

! CBC: Refers to Central Bedfordshire Council

! CCG: Refers to Clinical Commissioning Group

Authors

Esta Orchard, Participation Consultant & Researcher: Esta has extensive experience of quantitative and qualitative research methodology, with previous projects including: the development of participation strategies on behalf of the Office of the Deputy Prime Minister, and office of the Children’s Commissioner.

Sarah Walker, Project Manager: Sarah has a vast experience of project management within the areas of SEND development and provision, with projects including the ‘Sibling’ project, management of Short Breaks service provision and the establishment of Parent Carer Forums.

Benjamin Palmer, SEND Consultant: Benjamin has an inclusive understanding of the issues and legislation relating to SEND, with experience in the areas of Special Education Needs provision, Short Break Service development and in commissioning services for children and young people with SEND.

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Contents

Executive Summary 7

Section 1: Project Approach 11

Section 2: Research and Learning 28

Section 3: SEND Participation Strategy 39

Section 4: Implementation Plan 58

Appendices 77

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Executive Summary The Children and Families Act 2014, the Special Educational Needs and Disability (SEND) Code of Practice and supporting regulations place duties on local authorities and health services to fully participate and co-produce services with children and young people with SEND and their families.

‘The Act places the views, wishes and aspirations of children, parents and young people at the heart of the system and requires a culture change in the ways in which professionals work with families and with each other.’ - Edward Timpson, Parliamentary Under Secretary of State for Children & Families

Shortland Palmer Consultancy were commissioned by Central Bedfordshire Councils (CBC) ‘Support and Aspiration’ Project Board to develop a strategy for the ‘effective and meaningful’ participation of children and young people with SEND living in Central Bedfordshire, with the organisation Kaizen Partnership facilitating the operational elements of the project. Central to the success of the project was ensuring that the objectives, approach and expected outcomes were effective, that is ‘successful in producing the desired or intended results’, and meaningful, namely ‘serious, important, or worthwhile.’ This focus encompasses taking personal responsibility, engaging in open and honest communication and supporting positive working relationships towards real and tangible differences. Further to this, the SEND Participation strategy needed to promote participation on personal, organisational and strategic levels; to actively facilitate the views, wishes and feelings of children and young people with SEND; to listen and respect their personal aspirations and individual right to make decisions about their own support; and to embed this learning within policy and practice.

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Stakeholders from CBC, health services and the Voluntary and Community Sector (VCS) were interviewed, and over 180 children and young people with differing needs have participated in the project. Engaging with children and young people in familiar environments with people who knew them well proved to be highly successful, and this was facilitated by the involvement of 2 special schools, 2 mainstream schools, a further education college and 3 charities. A culture change is required in the way children and young people are involved in decision-making. Current structures and approaches to participation, planning services and making decisions about individuals care and support needs are often inaccessible to children and young people with disabilities, especially those with special educational support or communication needs. Children and young people are typically not accustomed to being involved in decision-making. In some cases, the only time they have been asked to input is in discussions and decisions, which have the biggest impact. By practicing decision-making in other areas, on a regular basis and in a way that is right for them, children and young people have a greater opportunity to learn and develop the necessary skills for the bigger decisions they will make in life. Children and young people have said throughout this project that they want to have a greater say in decisions affecting them. Currently they do not have universal access to information about available options in a format they can easily understand. They also want the flexibility to be able to choose a known and trusted person to help them to build confidence and support them to express their views, which could be a friend, sibling, parent or relative. The following Code for Participation has emerged from this consultation process, and also amalgamates findings from other national consultation reports, highlighting the following:

! Children and young people have a right to be listened to in decisions that are being made that affect them, both individually and collectively

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! Children and young people should have information about services, support and their care delivered in a way that they can understand

! Children and young people should have support to help them express their views and opinions from someone that they feel comfortable with and trust

! Children and young people should be given the support and encouragement to practice and develop decision-making skills at home, in school and in the community

! Young leaders should be nurtured and where possible consultation with children and young people should be youth-led or delivered in partnership with children and young people

! Opportunities for participation should be fun, creative and varied so that children and young people of different ages, abilities and interests have an opportunity to express their opinions and take part

The recommendations from this report focus on building the capacity, confidence and skills of children and young people, their parents and carers, and professionals to engage children and young people in decision-making through sharing or resources and training. Resources such as an ‘About Me’ one page profile, or tools like the ‘Mind of My Own’ application (Momo1) help children and young people to have a say in their Education, Health and Care plans or assessments about their need. Building upon the success of using schools to engage children and young people with SEND, we are recommending a children and youth-led outreach model where a central group of children and young people meet regularly. As well as informing service consultations and information and communication materials, this group would also consult with peer groups on a regular basis using mixed methods to enable those with differing needs to be involved.

                                                                                                               1 Mind of My Own: Application supporting self-advocacy in decision making

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Having access to accurate data on the population of children and young people with SEND within Central Bedfordshire is of great importance. CBC will need to actively develop participation with differing groups, fully engaging with all children and young people and ensuring the engagement and participation process reaches any currently underrepresented, including younger children and those from wider ethnic and cultural groups.

‘Fundamental to making this work and managing expectations on all sides is open and honest dialogue with parents, children and young people.’ – Dr. Dan Poulter, Parliamentary Under Secretary of State for Health

Although the findings within this report directly contribute to the areas required within CBC’s ‘Local Offer’, further development work will be necessary to fully co-produce a children and young peoples version of the ‘Local Offer’, which will be developed and ‘owned’ by these, proving to be a truly useful resource. For this project to achieve long-term success, commitment from CBC and health services will be required through organisational support and financial resources. It is vital that this work is taken forward and that participation is widely recognised as being central to day to day working when designing and delivering services, in fully meeting legislative requirements and in working in a coherent and equitable manner.

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Section 1: Project Approach Introduction This section of the report focuses on the background and reason for change, how the project was managed and key activities undertaken during the project timeframe. It also provides an overview of lessons learned during the project, in particular about changes in approach to engagement and participation. Background On 1st September 2014 the Children and Families Act and SEND Code of Practice came into effect as part of the reform of Special Educational Needs and Disabilities (SEND) legislation. These place duties on local authorities and health services to change the way in which they provide services for children and young people with SEND and their families in the following areas:

! Preparing for adulthood and post 16

! Co-ordinated assessment and Education, Health and Care plans

! Personal Budgets

! Local Offer

! Joint Commissioning

! Engagement with Children and Young People and Parents and Carers

‘Support and Aspiration’ Project Board CBC and health services in Central Bedfordshire have outlined their intentions for the implementation of the SEND reforms, and for the culture change required to embed participation with children, young people and their families in policy and

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practice through the ‘Support and Aspiration’ Project Board, and subsequent work-streams including:

1. Engagement and Involvement of Parents and Carers: The Parent Carer Forum in Central Bedfordshire is the Special Needs Action Panel (SNAP) which has parent representatives involved in all of the ‘Support and Aspiration’ Project Board work streams.

2. Engagement and Involvement of Children and Young People: CBC wishes to ensure that children and young people with SEND have the opportunity to express their views and have the opportunity to be actively involved in how services are designed and developed.

3. Single Assessment Framework and Improving Outcomes for All: The process to assess the needs of children and young people with SEND and their families, using a person-centered approach to record their views, wishes and feelings, and with these aspirations and outcomes being central to the Education, Health and Care plan, or SEND support.

4. The Local Offer: Providing information to children and young people with SEND and their families about services they are likely to require, and further information, advice and guidance about significant policies and practices relating to SEND services and provision.

5. Transition from Childhood to Adulthood: Improving the process which supports children and young people with SEND to move from childhood into adulthood as smoothly and successfully as possible.

6. A Developed Approach to Joint Commissioning: Reviewing the way that services are commissioned for Education, Health and Social Care with a greater focus on outcomes to improve the quality and capacity of service provision and to achieve better value for money.

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Project Objectives Shortland Palmer Consultancy has worked in partnership with CBC and health services in Central Bedfordshire to oversee a project with the following objectives:

! To review the SEND Pathfinder sites, examples of good practice and the requirements for participation within legislation

! To identify and engage with stakeholders from education, health, social care, leisure and the VCS to identify partners to support the participation of children and young people with SEND

! To facilitate the operational participation for the co-production of the ‘Local Offer’ by children and young people with SEND and the ‘Support and Aspiration’ Project Board

! To co-produce a strategy for the ‘effective and meaningful’ participation of children and young people with SEND

! To provide recommendations for the sustainable participation of children and young people with SEND

! To provide a project report including project methodology, scope and impact, outputs and outcomes, recommendations, project timeframe and record of expenditure

Methodology The project ethos was to remove barriers to participation, rather than to create them. The approach was to produce a strategy for participation that would work in the real world, that was in tune with children and young people’s lives, and that could be sustained in the long-term. This meant adapting to children and young peoples preferred ways of participating, truly listening to them and their

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individual circumstances, and being flexible and willing to change the way we worked. Shortland Palmer Consultancy utilised a tiered approach of ‘information’ consultation, participation and co-production’ to enable a broad range of children and young people with SEND to be involved in the project. This included the use of mixed methods of engagement and participation, so that children and young people with differing needs were still able to contribute to the project. The project itself comprised of five phases; research, development, validation, and evaluation with the implementation phase to include the handover to CBC and health services, and the ongoing culture change required to embed participation with children, young people with SEND and their families in policy and practice. Phase 1: Research (April – July 2014) The research phase included a review of the SEND pathfinder sites, examples of good practice and the requirements for participation within legislation; it included a scoping exercise to identify and engage with stakeholders from within health, education, social care, leisure services and the VCS; and it looked to identify and engage an inclusive group of children and young people with and without SEND. Professionals from across education, health, social care, leisure services and the VCS were interviewed. These consisted of face-to-face interviews lasting up to an hour. Analysis of these interviews highlighted a number of issues around how young people are currently involved in areas of participation, and how this might be improved for the future. Key contacts were identified through liaison with CBC, using the project teams’ known contacts and existing networks in Central Bedfordshire. In future more time will need to be invested in the development of links with health services.

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Based on the examples of good practice for Parent Carer Participation seen in recent years and the impact this has had, a focus group with parents and carers was established. This proved to be of great value in hearing from parents and carers on how their children might be enabled to express their views, and in determining an approach of how best to engage these. Research was conducted regarding current examples of good practice of participation with children and young people with SEND, and a review of the potential challenges or difficulties to achieving this. This encompassed both local and national examples and assisted greatly in developing an approach for engagement and participation. Findings from the SEND Pathfinders published on the Mott MacDonald website were reviewed in order to gain understanding of examples of good practice for participation nationally. The legislation around the SEND reforms was also reviewed, with particular consideration of areas relating to the voice of the child, and new responsibilities for local authorities and health services. Good Representation and the Importance of Data In planning for the development phase of the project, consideration was given to how to best engage with a sample group who were representative of the wider population of children and young people with SEND in Central Bedfordshire. In order to reach a sufficiently diverse group, the project team engaged support from the following organisations and educational settings:

! VCS: Families United Network; MENCAP and Outside-In

! Mainstream Education Settings: Samuel Whitbread Academy (Autism Provision) and Harlington Upper School (Hearing Impairment Unit)

! Special School Settings: The Chiltern School and Weatherfield Academy

! Further Education Settings: Central Bedfordshire College

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These settings took a very active part with this project and it would be sensible to continue to build on these established relationships as part of the ongoing development of SEND Participation. Making further use of the many and varied settings similar to those involved with the project in Central Bedfordshire will enable greater representation for children and young people with all levels of need. Within the scope of this project it was not possible to have full representation of all areas of additional need, disabilities, ages, genders and ethnicity. As part of ongoing development of SEND Participation, there will need to be sufficient opportunities for all areas of SEND, and targeted approaches for those currently underrepresented, including younger children (3-8), young adults (20-25) and those from wider ethnic and cultural groups. Following the next School Census, CBC will have more comprehensive data available on the number of children and young people who require additional support; including those requiring Education, Health and Care (EHC) Plans and SEN Support. This information will increase understanding of the differing needs of children and young people with SEND; highlight any areas of unmet need, support current service provision, and assist in future planning. By seeking to engage and support children and young people with and without additional needs or disability to work together in participation and co-production, a precedent for genuine inclusive practice will be established in the development of services, policy and practice. National Research During the research phase, Kaizen Partnership sought to obtain a wider perspective concerning the best recognised approaches for engagement and participation with children and young people with SEND from 12 practitioners working nationally. This research suggested that participation works best when

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people who know the children and young people best are engaged in the process. Examples highlighted that this would typically be parents and carers, but could also include teachers, teaching assistants and others from within educational settings. These collectively spend the most time with children and young people, know their particular needs and are best able to provide support as required to facilitate participation in an ‘effective and meaningful’ way. This became an important consideration for achieving the objective of engaging with a diverse group of children and young people with SEND for active participation within the project, and as a critical learning point for inclusion with the SEND Participation strategy itself. Following this, the approach for engaging and participation was adapted to allow the planned participation activities to take place in environments that the children and young people were most familiar with, that had the right support in place, and subsequently that provided the best opportunity for each child to successfully participate in their own individual way. Ultimately, these were the places that children and young people with SEND were already going to and, as such participation required much less in the way of time, energy or cost to them. In addition, this demonstrated the advantages of a discrete, person-centered approach that proved to be successful in achieving participation in a sustainable way. Engagement Strategy Meeting In July 2014 an engagement strategy meeting was held, bringing together people who either worked within CBC, the health services or the local VCS and provided services for children and young people with SEND and their families. It also brought together a number of parents who had children with SEND.

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The aim of the meeting was to feedback initial findings from the qualitative research with adult stakeholders, consult further about the hopes and concerns for the SEND Participation strategy, communicate the next steps in the strategy development and invite further involvement. The interim project report and findings are included within this document as an appendix. The meeting was structured to invite discussion, to inspire a positive view of participation and to provide information about the changes as a result of the SEND reforms; central to this being the requirements for local authorities and health services to involve children and young people with SEND in decision making for their individual care and in the strategic development of services. Phase 2: Development (August – October 2014) The development phase set out to bring together identified stakeholders to work alongside the inclusive group of children and young people with SEND to undertake analysis of the findings from the research phase within task and finish groups; and begin the process to co-produce the ‘Local Offer’ and the strategy for the ‘effective and meaningful’ participation of children and young people with SEND. During this phase children and young people were actively encouraged to express their views about how they wanted to participate. At all times the aim was to flexible, to be in tune with the world in which children and young people with SEND live, and to give them the freedom to say what they thought. It is important to note that when referring to ‘speaking’, ‘saying’ or ‘expressing their views’ this does not simply refer to the spoken word. Communication included a variety of methods, including expression through music, drama and arts; and other forms of augmented communication such as Picture Exchange Communication System (PECS).

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As part of this phase music sessions took place at MENCAP and Families United Network during their holiday play schemes to gather feedback from children and young people with SEND and their families. These sessions were very well received and as the sessions were being run at a place that was familiar, this made it much more accessible. During September, surveys were developed for use in education settings and with VCS organisations. Two versions were developed, a mainstream version and one for the special school settings. The suggestions for completion included the option for those supporting to adapt the questions and format to the individual needs of the child. Some children and young people completed their survey on-line in the classroom with very little support, while others received support from their teaching assistant who adapted the questions for them using PECS. When a child or young person needed support to complete the survey, the relevant areas of experience of the person supporting them was documented in order to improve practice in the future. The children and young people’s surveys and a parent and carer survey were circulated through CBC’s Children’s Services using the Children with Disabilities Register and Adult Social Care. In addition, 8 classroom-based sessions took place in 4 different settings, which increased the reach of engagement and participation and gave many more children and young people the opportunity to complete the surveys. Home visits were conducted with a number of families to complete the survey in different environments. This demonstrated an alternative approach as to how participation might work in practice, which resulted in a broader understanding of the personal experiences of children and young people with SEND.

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Phase 3: Validation (September – October 2014) The validation phase planned to include a series of broader engagement and consultation activities in order to gain consensus on the ‘Local Offer’ and the strategy for the ‘effective and meaningful’ participation of children and young people with SEND; and to establish the feasibility of the models for the sustainable participation of children and young people with SEND. During this phase the project team focused on analysing the feedback from the surveys, home visits, individual interviews and classroom-based sessions; collating the findings from the research and development phases; and providing an opportunity for the children and young people involved in the project to feed back their views on a proposed participation strategy. This culminated in a ‘Have Your Say’ workshop held at the Forest Centre in Marston Vale during the October half term. This was the first time that the group of children and young people had engaged with other stakeholders about participation. The event provided those present with an update of the project findings, outlining elements of the proposed new strategy and detailing aspects of the required structure to support it. Representatives from Leicestershire’s ‘Big Mouth Forum‘ for children and young people with SEND also attended. The ‘Big Mouth Forum’ gave an account of how they became established as part of Leicestershire Council’s ‘The Access Point’ service, and how they had diversified to develop the ‘Little Mouth Forum’ to give greater opportunities for younger children to participate. The ‘Have Your Say’ workshop should be celebrated as a first step towards enabling the ‘effective and meaningful’ participation of children and young people with SEND in Central Bedfordshire. As part of the programme, the children and young people put forward statements and questions to the professionals in attendance, including: ‘How can I get support to start my own business?’; ‘Why

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does it cost so much to get a bus to college each day?’; and ‘Why does everything with councils take so long?’ What became apparent by the nature of the questions and statements was that this was a group of children and young people with very clear ideas about what was important to them. Although some were nervous, they really wanted the opportunity to engage in conversation with professionals, and to be able to express both their own views, wishes and feelings, but to also give thoughtful consideration to the wider issues impacting on others. Many of the children and young people present expressed with great clarity their aspirations in life. These included what many would consider to be ‘normal’ opportunities, but which were made more challenging by a lack of available information, difficulties in navigating the system or simply not knowing who to ask for help. The unique perspectives presented was refreshing to many of the professionals, and was an indication of how co-production, with the right support can be a real opportunity to make things better. Phase 4: Evaluation (October – November 2014) The evaluation phase considered the reach and impact of the activities undertaken for the identification and engagement of stakeholders, the inclusive group and the co-production of the ‘Local Offer’ and the strategy for the ‘effective and meaningful’ participation of children and young people with SEND; and used the evaluation to identify models for the sustainable participation of children and young people with SEND. The Local Offer The reach of this project, its approach and methodology set out to gain further understanding of how best to engage and participate with children and young

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people with SEND. An important reason for this is the requirement for local authorities to develop a ‘Local Offer’ of services for SEND, and to publish it in such a way that it is fully accessible. Whilst the findings of this report, including the surveys, home visits, individual interviews and classroom-based sessions contribute to the areas required within CBC’s ‘Local Offer’, this did not provide all children and young people with SEND living in Central Bedfordshire with an opportunity to participate. This report contains indicators of what children and young people consider important in their lives, what they like and dislike and how they currently find out about services. What is also important to recognise for the ongoing development of the ‘Local Offer’, is that the engagement and participation of children and young people with SEND needs to happen in an environment that they are comfortable with, with people they trust and with the support that’s right for them. What has been achieved with this project can become the foundation for future participation, and for the co-production of the ‘Local Offer’ during the implementation phase. Leadership Training and Steering Group Within the original project outline leadership training had been planned for those children and young people who had been involved with the project and who wished to remain involved. In addition to this, an inaugural steering group meeting had been scheduled to review the project findings to date, as well as initiate working relationships with leads from health, education and social care. The leadership training and steering group were aimed to assist children and young people with SEND to develop the necessary skills to support them to build confidence, become more involved with participation and to be able to express their views on a SEND Participation strategy.

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It became clear that arranging both the leadership training and the steering group outside of the environments that the children and young people had engaged in the project to date would be adding further logistical complications. With this understanding, and with the support of the settings involved it became apparent that the best way to achieve the desired outcomes of the leadership training would be to deliver these sessions within the settings themselves. This proved advantageous in that children and young people were already attending the setting; they were familiar and comfortable with the environment; and were supported by people that knew them and their preferred methods of communication. Further, it meant that more children and young people could be reached, it mitigated the need to arrange sessions in addition to already busy schedules and it proved to be a more financially efficient approach as no additional resources, venues or transport were required. These findings proved to be extremely important both in terms of completing the project tasks, and as indications of how the SEND Participation strategy could prove to be ‘effective and meaningful’ in practice, with the following benefits recognised:

! Being responsive and listening to settings about the participation process has engaged them in the project and given these a greater sense of ownership

! Establishing participation where children and young people were already in attendance reduced the need for additional activities, which was easier for professionals and less pressure for families with diverse schedules

! The project had a greater reach and impact to children and young people with SEND, and was more inclusive resulting in a greater understanding of differing needs

During the leadership training sessions, children and young people were invited to attend the ‘Have Your Say’ workshop during October half term. This was in

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place of the steering group meeting, but aimed to achieve the intended outcomes in light of the principles outlined above. With representation from CBC, health services, educational settings and the VCS present, the children and young people involved in the project undertook the following:

! Review the findings from the surveys and classroom-based sessions and provide feedback

! Plan how they wanted to feedback their viewpoint on these findings to the CBC and health services

! Explore different ways to express their views and how to get involved in participation in the future

! Consider proposed recommendations for participation based on the research phase

Settings were very positive about developing opportunities for children and young people to participate and express their views. This is to be recognised, and further utilised in developing SEND Participation in Central Bedfordshire. By bringing these settings into a wider network, children and young people can have an active involvement in participation on a personal level for support they individually receive, an organisational level for places they attend and a strategic level by feeding these experiences into the development of policy and practice. Lessons Learned A central aspect of the project was to ensure that the objectives, approach and expected outcomes were effective, that is ‘successful in producing the desired or intended results’, and meaningful, namely ‘serious, important, or worthwhile.’ This highlighted the significant value when those involved with participation take personal responsibility; engage in open and honest communication and support positive working relationships towards real and tangible differences.

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It also meant being responsive when barriers became apparent. The project team was mindful of the need to ensure that where opportunities for participation were presented, that they proved to be accessible for all. In practice this was not always possible given the timescale of the project. However in the application of the SEND Participation strategy this principle should be used to ensure an equitable approach. Further evaluation of the project objectives, approach and findings highlight the significance that the views, wishes and feelings of children and young people on both an individual and collective basis have on the approach to engagement and participation. Additional elements that support and promote participation of children and young people with SEND include:

! Having a single point of contact in the early days of engagement with schools and other settings avoids confusion and builds good relationships

! When working with schools, colleges and charities it is good to liaise and plan participation around less busy periods

! Using available data on population, particularly relating to those with SEND to identify the needs and requirements for representation within CBC

! Children and young people with SEND need to be supported by people who know them well and using existing networks can be very effective

! Build upon the foundations existing within schools, colleges and charities which have been involved in the project

! Activities with children and young people have to be relevant and appropriate for their world, not necessarily adults preferred methods

! Children and young people need to be given adequate time to participate, with timings sufficiently flexible to allow for this

! For similar projects, co-design how the project would work in each individual environment, make it a children and youth-led process

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! Use a diverse range of methods to enable a broad range of children and young people with differing needs to participate

By ensuring adequate time is available, truly listening, giving consideration to personal circumstances, recognising individual support needs and by being flexible and willing to change the way we work, it is possible to achieve the participation of children and young people with SEND in an ‘effective and meaningful’ manner. Project Management This project was managed through Shortland-Palmer Consultancy, with Kaizen Partnership utilised for operational participation elements. During the project timeframe the project manager maintained contact with the project consultants, researchers, project administration and other professionals, tracking progress against the project objectives and reporting this to the project team and project lead for CBC. The project consultants supported the project manager in collating and providing updates to CBC’s ‘Support and Aspiration’ Project Board and undertook the required tasks necessary in order to ensure the successful delivery of the project within the required timescales, and in agreement with the project lead for CBC. Stakeholders were kept informed at the engagement strategy meeting by means of the interim report and at the ‘Have Your Say’ workshop co-hosted by the children and young people involved in this project during the October half term. Further detail is included at Appendix 1: ‘SEND Participation Infographic’ The project duration was around 9 months; this could have been less if the work around engagement and participation was conducted earlier in the academic year, therefore avoiding the school summer holidays. The project duration would have been longer if additional schools and charities had participated.

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Phase 5: Implementation (December 2014 – Onwards) The implementation phase built on the learning gained throughout the project and sought to disseminate the project outcomes, the published ‘Local Offer’, the strategy for the ‘effective and meaningful’ participation of children and young people with SEND by means of an active learning event for stakeholders; and the identification of ‘participation champions’ within health, education, social care, leisure services and the VCS. In order for this project to achieve long-term success, commitment from CBC and health services will be required by means of organisational support and financial resources. It is vital that this work is taken forwards and participation is widely recognised as being central to day to day working when designing and delivering services, in fully meeting legislative requirements and in working in a coherent and equitable manner. Within the scope of the implementation phase, it will be necessary to utilise the existing networks to good effect in order to develop a robust SEND Participation network. By bringing these settings into a wider network, children and young people will have greater opportunity to have an active involvement in participation on a personal level, an organisational level and a strategic level. In order to maintain the momentum for SEND Participation, the project team will present to CBC’s Corporate Parenting Panel in December 2014 and will provide further briefings to CBC and health services as required. The project team’s report will include guidance, strategy and recommendations for the development of participation for children and young people with SEND in Central Bedfordshire.

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Section 2: Research and Learning  Introduction This section of the report sets out to share the learning from the research, development and validation phases of the project. It also includes findings from the consultation with children and young people with SEND and their families, and feedback from professionals who support these.

‘I would like my points to be heard…’ – Young Person

In addition to informing the recommendations for ‘effective and meaningful’ participation, we hope that these findings will be useful to others supporting children and young people with SEND; and as such will promote opportunities for these to be involved in decisions affecting them personally, and as part of a wider community. Involving Children and Young People Children and young people with SEND were keen to have a say in almost all aspects of their lives. However, priorities identified during this project focused on education, social and recreational activities and the journey to achieving greater independence. Parents and professionals were very supportive of children and young people’s involvement in decision-making but are often unclear about how to achieve this, particularly for those with learning disabilities. There was some concern that simply ‘going with’ what children and young people say, without being certain it was what they really meant, could lead to poor decision-making with potential risks to their safety and well being.

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Having someone who knows the person well who can help them express themselves is important, and should not be overlooked. This is reflected within the SEND Code of Practice where it states: ‘A young person can ask a family member or friend to support them in any way they wish…’ (Section 8, p.127)

‘It was clear that friends were very important; they would rather spend time with friends than do anything else…’ - Facilitator

Children and young people with SEND often feel that their friends are the best listeners, closely followed by their parents and carers. While having friends around for support to express their viewpoint was identified as being helpful, large group discussions were felt to be not so helpful. Children and young people expressed a preference to the use of technology and other methods to help them express their views, such as computers, Makaton, British Sign Language (BSL), Picture Exchange Communication System (PECS), Talking Mats and other augmented communication systems.

‘I would like to have a sign-language communicator with me at events like youth club…’ – Young Person

It was apparent that creating leaflets or websites in clear English alone is not sufficient to ensuring effective communication and meaningful understanding. The ‘Local Offer’ will need to provide information in a manner that is compatible with all communication needs of children and young people with SEND. Most of the information that children and young people were aware of was obtained from people who they knew, and who were able to explain it to them, including parents and carers, friends and trusted professionals. This indicated the need to ensure that any information developed is done so in a manner that it is fully accessible for both children and young people with SEND, and adults.

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A lack of detail in the support that activities and services provided was often a factor in whether children and young people with SEND decided to attend or not. Information with the ‘Local Offer’ should be especially clear in this area, including details of wheelchair access, the availability of changing places and accessible toilets and whether the setting is able to support different communication needs.

‘These young people are not always aware of what they could do, so it’s very difficult for them to answer questions on what they would like to do as they don’t know what their options are…’ – Professional

Siblings can have a very important role to play as they often have a unique relationship with their brother or sister and are able to offer a different perspective to that of a parent or teacher. They know their brother or sister’s likes and dislikes, the best way to communicate with them, the things they are able to do by themselves, and those that they need support with.

‘The problem with disabled people, like my brother, they only say what they think is the correct answer that you want to hear…’ – Sibling

We saw a number of examples where children and young people with SEND had fewer opportunities to partake in decisions for themselves. This included small decisions with little impact, to big decisions with huge impacts on their lives. Where this was the case many tended to have less confidence, and were often unsure as to what was the ‘right’ decision to make, simply because making decisions was not something they were used to doing.

‘I just want people to be kind and nice to me, not rude…’ – Young Person

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Training programmes, networks and participation forums for children and young people with SEND have been developed in different parts of the country. Some were established during the ‘Aiming High for Disabled Children’2 programme, with others in response to the SEND reforms. These have been hugely successful in enabling children and young people to become involved with participation. Working with schools, colleges and charities proved to be particularly effective in engaging with children and young people in an environment they were familiar and comfortable with. However, teachers and other professionals have busy schedules, and they are not always able to support all children and young people with SEND to be involved in public decision-making. Information and Communication Accessible information and the opportunity to communicate are the foundations of successful practice in engaging people in effective decision-making. Despite this, most children and young people with SEND did not consistently have access to information in formats they understood, so did not feel that they fully understood any options available to them.

‘You need to know the young person you are talking to. If someone has autism, if you knew them, you would know what to ask them, how to ask and if you should ask…’ – Young Person

At best ‘accessible’ versions of documents appear in clear English, but for many children and young people with learning difficulties, or who use other methods to express themselves, such as Makaton, British Sign Language or PECS this is not sufficient to ensuring effective communication and meaningful understanding.                                                                                                                2 Aiming High for Disabled Children: Better Support for Families (2007)

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Children and young people said that they get most of their information from parents or carers, friends or the Internet. However, it was highlighted that unless information specifically says that events and activities are accessible for them, many assume that it is not something they can join in with. Really Get to Know Me Many of the children and young people talked about having support from someone they knew and trusted to help them communicate. Others mentioned they found it difficult or embarrassing to say when they didn’t like something, didn’t understand or know what to do. Most said they needed to have enough time to be able to communicate what they think, or how they feel about things.

‘If you don’t trust the person, or feel comfortable with who is talking to you, you can feel like a bit of data that will just sit there and get ignored…’ - Young Person

Children and young people felt their friends were best at listening to them, followed by parents and teachers (Chart A: ‘Good Listeners’). Professionals that children and young people saw less frequently scored significantly lower than these.

‘You have to know the person so you can work out what they really mean…’ - Facilitator

Parents supported these findings and highlighted the importance of knowing and using each persons preferred way of communication on every occasion. They cautioned against responses to leading questions as some children and young people tended to reply with what they thought was the ‘right’ answers rather then what they thought, or they wanted to please the person asking the questions.

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Who Is Good At Listening?

Chart A: ‘Good Listeners’

From the children and young people surveyed, 74% stated that having someone to help them communicate, rather than speak on their behalf, would make it easier to express what was important to them. They indicated that they found it hard to communicate dislikes, and times when they didn’t understand.

‘I don’t want to say that I can’t do something…’ – Young Person

Of those surveyed 67% felt able to express themselves when they liked something, whereas this dropped to 41% feeling able to do so when it came to expressing that they didn’t like something. This is reinforced by consultations

23%

21%

19%

16%

13%

8%

FriendsParentsTeachersFamilyDoctorsProfessionals

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elsewhere which suggest that people can be reluctant to complain about care or support through fear it may jeopardise their access to services. Professionals who supported children and young people with learning difficulties were concerned that listening, without knowing them and really understanding their communication style could lead to poor decision-making in practice. Others were apprehensive that any structure to support participation would not be inclusive of children and young people with more complex needs. Gaining Confidence to Say What I Think Communicating and participating in decision-making are skills that require practice. For many children and young people with SEND, they have not had sufficient opportunities to allow them to gain these skills and to be confident using them. Low confidence levels amongst children and young people reflect the current lack of opportunities for ‘effective and meaningful’ participation.

‘They feel quite isolated…they don’t feel like they have the right to say what they need, which is quite sad.’ – Volunteer

Of the children and young people surveyed, 66% said that they would like to be asked their opinion more. There were a significant number of children and young people who were unsure on this, which may indicate a lack of confidence, or uncertainty about what this would involve.

‘I need to be more confident…’ – Young Person

Increasing their confidence to express their thoughts and feelings and to take part in decision-making was a recurring theme with 61% saying it would help them personally. Other consultations have also emphasised that children and

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young people need more access to opportunities to practice decision-making, and gain confidence in their own abilities. What’s Important to Me During the consultation process, children and young people were asked what areas they would most like to have a say in. The findings indicated that they considered education to be a primary area, with social life and free time a close second. From the survey results 54% of children and young people mentioned that they would like to have a greater say in local services. Independence emerged as a priority for those involved in the focus groups, especially where this involved chances to socialise and go to recreational activities on their own or with friends. Children and young people particularly wanted to do activities that took them ‘out’ like swimming, football and visiting places, with creative activities such as cooking and arts also proving popular.

‘Sometimes I like to be independent…’ – Young Person

For most of the children and young people surveyed, they mentioned that they were reliant on their families to find out about any opportunities or activities that they could attend. In most cases they also needed to be transported to the activities by their family, and on many occasions their families would have to stay at the venue while the activities took place. For others their focus and goals were to get work, go to further education or to live independently. These were really important areas that many expressed personal aspirations towards. Some professionals expressed frustration on the seemingly limited availability of options past the age of 16 for children and young people with SEND.

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Children and young people talked less about their involvement in decisions on health or personal care; this may be because it was considered a lower priority, although it is important to consider if this was influenced by the methodology. Most of the focus groups and surveys took place in schools within group discussions and they may not have been comfortable to discuss this subject within that context. Culture Change Children and young people are not routinely involved in decision-making about their lives in Central Bedfordshire. Parents and carers were normally accepted as the representative of the views of children and young people. At times there was seen to be a conflict between listening to the views of the child and listening to what the parent felt was in their best interests.

‘It’s important that we listen to our children, I know the decision makers want to listen to the parent, but it’s about the child’s needs…’ - Parent

During the interviews parents stated that they felt their children should have a greater say in decisions that affected them. Barriers to doing so included simply not being asked; a lack of sufficient time; a need for routine and structure limiting opportunities for change; and perceived communication barriers, or not having appropriate communication methods available.

‘Very few people actually ask them what they want. I think a lot of them feel like they haven’t been listened to…’ – Parent

Professionals generally aspired to more regularly involving children and young people in decision-making. Within specialist services, particularly in the VCS,

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there was a practice of observing children and young people’s reactions and asking for feedback on activities. However there was little or no evidence of co-production, or examples where children and young people were proactively involved in participation. There are well-established children and youth voice structures within CBC, including Youth Parliament, Young Inspectors and plans to resume a Young Commissioners programme. There is also a desire to ensure these structures are fully inclusive, with the necessary arrangements in place to enable the ‘effective and meaningful’ participation of children and young people with SEND. Some of the children and young people who took part in this consultation were keen to attend inclusive groups, and would be more than able to participate in these so long as the venues were accessible; interpreters were available where this was required; and support was offered to them before and after to ensure their needs were understood. However, for some, group discussions would be difficult and they would find it hard to participate. Throughout the consultation period, professionals mentioned that they would like further support on how to make their activities more accessible to children and young people with SEND, and particularly those with learning disabilities. The concept of having resources with examples of how to do so effectively was seen as a useful tool. Conclusions Children and young people, their parents and carers and those who supported them, all supported the move towards ensuring that children and young people with SEND had a stronger voice in decisions about them. While this was the case, most were unsure as to how this could be universally achieved within Central Bedfordshire.

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Children and young people had clear priorities on areas that they wanted to have a greater voice in, including education and leisure services. In terms of day-to-day decision-making, the ambition for greater independence was a significant area that many children and young people either wanted to achieve, or felt pressure to make decisions on. At times it was support around this that was most requested. However this is quite a big change in the current way of working. All those with whom we spoke wanted to see more support and guidance available for this in particular, including good practice models of how best to achieve it, examples of how decision-making could be fun and resources to ensure it is fully inclusive. One of the biggest challenges is ensuring information is provided in accessible formats, and that children and young people have the appropriate support to express their views. The solution to this is based on the strength of relationships and understanding that friends, families, teachers and support staff have of individual children and young people who are their friends, or who they support. Any sustainable strategy for increased participation needs to make use of these relationships as the foundation for strengthening and supporting the participation of children and young people with SEND. Local authorities and health services should be flexible in their approach in line with the SEND Code of Practice, ensuring that children and young people have the support they need to help them engage with both personal decision-making and broader participation.

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Section 3: SEND Participation Strategy Introduction This section of the report is based upon examples of good practice nationally, requirements for participation within legislation and learning gained throughout the project. It also provides recommendations for the sustainable participation of children and young people with SEND, and the identification of ‘participation champions’ within health, education, social care, leisure services and the VCS. Background The drive to ensure that children and young people with SEND are listened to and involved in decision-making comes from a number of sources3. For over 25 years the ‘Children’s Rights’ movement has championed the right of children and young people to be involved in decisions that are made about their lives. This is enshrined in the United Nations Convention on the Rights of the Child. United Nations Convention of the Rights of the Child

(Article 12)

                                                                                                               3 The Children’s Act (1989; 2004; 2007); Framework for the Assessment of Children in Need and their Families (2000); Working Together to Safeguard Children (2010; 2013); and The Chronically Sick and Disabled Persons Act (1970)

‘Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.’

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‘Working Together to Safeguard Children‘ provides guidance to safeguard and promote the welfare of children and young people, and to monitor this through Local Safeguarding Children Boards (LSCBs). Recent investigations into child abuse and neglect have highlighted the consequences of not actively listening to children and young people. Working Together to Safeguard Children

(Par. 11.28)

For children and young people with SEND this is particularly relevant due to the difficulties many have with communication and the type of support they receive, including personal or intimate care. A recommended safeguard to protect children and young people from abuse is ensuring they are listened to and that their views are central to decision making. The greater their vulnerability, the more important it is that those supporting them take every action to enable this to happen. Requirements to engage and participate with children and young people and their families is set out in the ‘Children and Families Act 2014’, the ‘SEND Code of Practice’ and supporting regulations. These establish responsibilities for local authorities and health services to involve children and young people in individual decision-making and the co-production of services; with formal procedures established to facilitate this and to embed it in policy and practice.

‘The available evidence on the extent of abuse among disabled children suggests that disabled children are at increased risk of abuse, and that the presence of multiple disabilities appears to increase the risks of both abuse and neglect.’

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Children and Families Act: General Principles

(Section 19, p. 28)

In addition to the general principles in the Children and Families Act to ‘support and involve children and young people’, the SEND Code of Practice outlines specific principles to underpin this in practice. This incorporates the participation of children and young people and their families in decision-making, early identification and early intervention for support needs and a greater choice and control over support.

In exercising a function under this Part in the case of a child or young person, a local authority in England must have regard to the following matters in particular:

a) the views, wishes and feelings of the child and his or her parent, or the young person;

b) the importance of the child and his or her parent, or the young person, participating as fully as possible in decisions relating to the exercise of the function concerned;

c) the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions;

d) the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.

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These principles cover responsibilities for education, health and social care services to work collaboratively in the provision of high quality services with a focus on inclusive practice, better access to learning and successful preparation for adulthood, including independent living and employment. (SEND Code of Practice, Chapter 1, p.19) The SEND Code of Practice goes onto detail requirements for local authorities to involve children and young people and their families in discussions and decisions for individual support and local provision. And for early years, schools and colleges to ensure that support is available to help these actively contribute to needs-assessments and in developing and reviewing EHC plans. SEND Code of Practice: ‘The Principles in Practice’

(Chapter 1, p.20)

Specifically, local authorities must

! ensure the child’s parents or the young person are fully included in the EHC needs assessment process from the start, are fully aware of their opportunities to offer views and information, and are consulted about the content of the plan

! consult children with SEN or disabilities, and their parents and young people with SEN or disabilities when reviewing local SEN and social care provision

! consult them in developing and reviewing their Local Offer

! make arrangements for providing children with SEN or disabilities, and their parents, and young people with SEN or disabilities with advice and information about matters relating to SEN and disability

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In addition to duties for local authorities, the SEND Code of Practice also sets out duties for health services, including Clinical Commissioning Groups, NHS Trusts or NHS Foundation Trusts. This states that where these ‘are of the opinion that a child under compulsory school age has or probably has SEN or a disability,‘ they ‘must give the child’s parents the opportunity to discuss their opinion with them before informing the local authority.’ (Chapter 1, p.20) Early Support ‘Early Support’ is a core delivery partner supporting the implementation of the SEND reforms; and aims to improve the provision of services for children and young people with SEND in line with the following principles:

! Valued Uniqueness: The uniqueness of children, young people and families is valued and provided for

! Planning Partnerships: An integrated assessment, planning and review process is provided in partnership with children, young people and families

! Key Working: Service delivery is holistic, co-ordinated, seamless and supported by key working

! Birth to Adulthood: Continuity of care is maintained through different stages of a child’s life and through preparation for adulthood

! Learning & Development: Children and young people’s learning and development is monitored and promoted

! Informed Choices: Children, young people and families are able to make informed choices

! Ordinary Lives: Wherever possible, children, young people and their families are able to live ‘ordinary lives’

! Participation: Children, young people and families are involved in shaping, developing and evaluating the services they use

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! Working Together: Multi-agency working practices and systems are integrated

! Workforce Development: Children, young people and families can be confident the people working with them have appropriate training, skills, knowledge and experience

The ‘Early Support’ principles reinforce the importance of including children and young people in decision-making as well as valuing the uniqueness of children and families. The table included at Appendix 2: ‘Children and Families Act; Early Support Principles’ aligns these with the general principles from the Children and Families Act, and together they provide a useful framework for this strategy. ‘Effective and Meaningful’ Participation In order for the strategy to work in practice it needs to be established on what children and young people with SEND and their families experience. The intention was to develop a strategy that was effective, that is ‘successful in producing the desired or intended results’ and meaningful, namely ‘serious, important, or worthwhile’ for children and young people with SEND. The strategy should promote personal, organisational and strategic participation that facilitates the views, wishes and feelings of children and young people and respects their personal aspirations. It aims to influence a culture change within current practice to ensure that all children and young people with SEND have the right to personal decision-making and wider participation. The recommendations within this strategy are based upon the consultation with children, young people, parents and professionals in Central Bedfordshire. They are also informed by good practice and research from SEND pathfinders.

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SEND Participation Charter In addition to duties in legislation and the ‘Early Support’ principles, a number of reoccurring themes emerged from the consultation with children, young people, their parents and professionals. Along with findings from national consultations4, these have been brought together to form the SEND Participation Charter, which establishes the right of children and young people with SEND to:

! be truly listened to in decisions that affect them, individually and collectively regardless of their background or abilities;

! receive fully accessible information about services, support and care in formats and methods that they completely understand;

! have support to help them really express their views and feelings from someone they are comfortable with, and who they trust;

! receive help and encouragement to practice decision-making skills at home, in school and in the wider community;

! have opportunities to develop as young leaders with support to become more confident in communicating their opinions

! help shape decision-making in ways which are creative, varied and inclusive of all ages, interests and abilities; and be able to

! develop methods for information, consultation, participation and co-production in genuine partnership with statutory authorities.

This charter will be owned and developed by children and young people with SEND living in Central Bedfordshire as part of the SEND Participation strategy. Professionals, and those involved in strategic service development will be asked to commit to achieving the ‘effective and meaningful’ participation of children and young people with SEND in their areas of responsibility.                                                                                                                4 Young People’s Views on the Draft SEND Code of Practice, Council for Disabled Children, January 2014

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SEND Participation Guidance The following guidance for participation supplements the SEND Participation Charter, and was sourced from the consultation with children, young people and their families living in Central Bedfordshire, and those professionals supporting them.

! Let me have enough time: ‘Adults are good at listening if they have the time, it’s all about people who have time for you and don’t rush you.’ Often a lack of confidence or self-esteem can hold people back from expressing themselves, ensure young people have enough time to be able to do so.

! Really get to know me: ‘I don’t want just anyone helping me, make sure there are people to help me that I know and trust.’ Take time to get know the young person you are supporting, and ensure the continuity of people involved as far as possible, but especially at the start and end of projects.

! Don’t limit my aspirations: ‘I would like to create my own films but need support.’ Recognise, celebrate and respect individual skills, talents and strengths. Give people time to explore options that can help them work towards achieving their goals in a meaningful way.

! Support and encourage me: ‘I don’t know the words to say something.’ Provide support and opportunities to practice decision-making so young people build confidence; inspire young person to get involved and sincerely encourage them when they do, recognising their achievements.

! Visit me where I am relaxed: ‘Someone should go and visit the college and find out about our views.’ Work with children and young people in environments that they are familiar with, or allow time so they can get to know a new space.

! Talk to me in a way I understand: ‘You need to know the young people you are talking to. If someone has autism, if you knew them, you would know what to ask them, how to ask it and if you should ask.’ Adapt your approach for each person, and ensure it is right for him or her.

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! Let me use what I need to communicate: It is of utmost importance to use whichever communication system or approach that young people use, including Makaton, British Sign Language, PECS, Talking Mats and other augmented communication systems.

! Explain what you really mean: ‘Questionnaires are ok, but you really need someone to help you go through them so you really get the point.’ Some people may repeat what you say when they are unsure of how to respond, or are anxious; use different approaches and communicate clearly.

! Let me chose: Working with friends or in pairs ‘like we are doing now’ can be a good way for some young people to gain confidence to express themselves ‘not in a big group or writing things down.’ Allow young people to choose themselves the best way for them to participate.

! Be flexible: Children and young people like using technology and other methods to help them express their views including iPads, computers, theatre, video and arts based activities. Keep activities simple, engaging, relevant to them and their life and most of all fun!

! Stick to what’s agreed, or let me know if things change: Routine can be very important; predictable start and finish times are good. If plans change, it is really important to let young people know in advance so that they are prepared and less likely to become anxious.

! Be aware of how you may come across: ‘People from the council should come and talk to us, a softer person, someone you can trust. People in suits are intimidating.’ Be proactive and use an approach that works, it doesn’t have to be complicated; most of all really listen to each person and respect their views.

Further guidance on how to achieve ‘effective and meaningful’ participation with children and young people with SEND in practice is included at Appendix 3: ‘Best Practice on Consultation and Strategic Involvement with Young People with Special Needs’

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Objectives The SEND Participation Charter and supporting guidance is intended to assist local authorities and health services in meeting their duties for participation. This strategy includes further objectives covering ‘Information and Communication’, ‘Individual Decision-making’ and the ‘Co-production of Services’. Objective 1: ‘Information and Communication’ Children and young people have information to help them understand what support is available in school or at home, and what other activities they can access. They know who to speak to if they are unhappy in school or at home, or with decisions that doctors, teachers, social workers or other professionals make. They know they have a right to express their views and are confident that these are taken seriously. Objective 2: ‘Individual Decision-making Children and young people are routinely listened to and involved in decisions about the support they receive including education, health, social care and other activities. They are encouraged to make decisions about things at home, in school and in other areas of their lives. Parents and those supporting them help with this, and understand that sometimes they will make mistakes. Objective 3: ‘Co-production of Services’ The quality of SEND services and provision will improve by means of effective participation between children and young people and statutory authorities. Services will be more aligned with the differing needs of children and young people with SEND through meaningful co-production. The involvement and contributions of children and young people is valued and respected.

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Recommendations The recommendations outlined here seek to promote personal, organisational and strategic participation and were identified as part of the consultation process with children, young people, parents and professionals in Central Bedfordshire, and informed by good practice and research from SEND pathfinders. Accessible Information Without accessible information about available options, it is very difficult to make informed decisions. One of the most important areas for development is the creation of genuinely accessible information for children and young people with SEND that is compatible with all of their communication needs. We recommend the children and young people involved with this project be supported to co-produce the brief for the ‘Local Offer’. A version should be developed that adults can share with children and young people and which has a visual design focus, including Makaton, BSL and PECS where required; and a version for more independent use which is compatible with popular technology. One Page Profile Research shows that when children and young people are able to create their own ‘One Page Profile’ they prove to be especially successful in supporting person-centred planning. ‘One Page Profiles’ have also been particularly effective in enabling better participation for all children and young people, whether they have an EHC plan, receive assistance through SEN Support or have no additional needs. Children and young people should have the option to choose a known and trusted person help them to create their ‘One Page Profile’, and to support them

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at meetings. This could be a friend, family member or trusted professional, but most importantly someone who can support them to express their views. The views, wishes and feelings that children and young people outline in their ‘One Page Profile’ should be valued. These should be central to all decision-making processes, with copies included in case notes, and be used routinely in practice. Professionals should recognise the right of children and young people to make decisions about their own support and respect their personal aspirations. Training and Capacity Building for Professionals Training should be developed for professionals to increase their skills and confidence in involving children and young people with SEND in decision-making. This should be incorporated into existing programmes, including inductions, Continued Professional Development (CPD) and other mandatory training. The training programme should be personalised for professionals who are involved in individual support and assessments, and those who are involved in organisational and strategic service planning. Children and young people with SEND should be involved in the design of the training materials, including determining the learning objectives and aspects of the delivery. Training and Capacity Building for Parents and Carers Workshops should be offered to parents and carers to support the culture change in participation. The workshops should be parent-led and developed in partnership with children and young people. They should aim to promote the rights to personal decision-making and wider opportunities to participate for children and young people with SEND.

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The workshops would provide information to help children and young people to learn decision-making skills at home and to confidently participate in meetings and assessments. They would also consider elements to help with preparing for adulthood, including further education, employment and independent living. The workshops would be sensitive and considerate of the emotional aspects of decision-making as well as the practical, and look to learn from the knowledge and experiences of parents and carers in establishing best practice for transition to adulthood. SEND Participation Champions ‘Participation Champions’ should be identified within education, health and social care, including the strategic leads from the ‘Support and Aspiration’ board, and the wider network including VCS groups. The ‘Participation Champions’ will provide governance for the SEND Participation strategy, overseeing the implementation and development of participation in Central Bedfordshire. SEND Participation Network A SEND Participation Network should be established as the strategic partner for children and young people with SEND living in Central Bedfordshire. It should be developed and led by children and young people in partnership with the local authority and health services. There should be resources provided to enable the SEND Participation Network to facilitate ‘effective and meaningful’ participation. The SEND Participation Network would be based on a ‘Hub and Spoke’ model, with the ‘Hub’ comprising of the children and young people involved in this project, and the ‘Spokes’ the different settings they attend. This will develop in time to include additional settings in health, education, social care, leisure and the community (Chart B: ‘SEND Participation Network’).

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The SEND Participation Network ‘Hub’ would retain links with the schools and voluntary groups who have supported this project, and would seek to build on those relationships. The ‘Hub’ would be structured in a similar way to Parent Carer Forums where a steering group coordinates participation with a broader group of parents and carers. ‘Hub and Spoke’ Model

Chart B: ‘SEND Participation Network’ The ‘Spokes’ of the SEND Participation Network would be supported to develop through a ‘Hub’ outreach programme and with assistance from a new SEND Participation post, covering health, education and social care. Through these methods understanding of the views, wishes and feelings of children and young

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people within a wider network can be achieved. Further detail is included at Appendix 4: ‘SEND Participation Network’. The SEND Participation Network ‘Hub’ would meet monthly with ‘Spoke’ activities taking place between these meetings, subject to each of the settings particular circumstances. The frequency of meetings should be reviewed on a regular basis to ensure it is suitable for all those wanting to attend. Young Leaders The SEND Participation Network will develop young leaders, who will be involved in co-producing guidance for accessible information, SEND Participation Charter and the ‘Local Offer’. They would audit existing participation structures and make recommendations on how these can be more accessible, and facilitate consultations at the settings in the SEND Participation Network. In these settings children and young people with SEND could explore the issues that affect them the most using different methods such as music, drama and arts. The most pertinent issues would be highlighted to the strategic leads for health, education and social care by the young leaders, where they were unable to do so in person, this could be achieved with multimedia presentations. Outreach Programme The SEND Participation Network would develop an outreach programme to assist existing ‘Spoke’ settings to grow and to support new settings to become established. The outreach programme was inspired by the children and young people who were involved with this project, and is based on examples from SEND pathfinders and other initiatives from around the country5.

                                                                                                               5 ‘Viper’ Young Researchers; ‘Big Mouth’ Leicester; Darlington Association of Disability: Young Leaders Programme; and EPIC (Council for Disabled Children)

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Young leaders from the SEND Participation Network would develop and deliver the outreach programme with support from the SEND Participation post. These young leaders would receive training to help them to grow in confidence and to develop leadership and training skills. The outreach programme would offer settings a range of resources and training in addition to membership of the SEND Participation Network. SEND Participation Officer The implementation of the SEND Participation strategy will be supported and developed by a new SEND Participation post, covering health, education and social care. The post would manage the operational budget and work-stream for the SEND Participation strategy and be proactive in supporting ‘effective and meaningful’ participation within the ‘Hub and Spokes’ of the SEND Participation Network. Outputs Implementation of the SEND Participation strategy, and completion of the project recommendations and actions detailed within this report will enable the following outputs to be achieved:

! Children and young people will receive leadership training and will actively support the SEND Participation Network as young leaders

! Children and young people who receive training in recruitment will contribute to the appointment of staff centrally

! Consultation activities will be delivered at settings within the SEND Participation Network and facilitated by the young leaders

! Children and young people will attend events bringing the SEND Participation Network together to share views and experiences

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! Young leaders will present the findings from consultations to leads for health, education and social care to assist with strategic planning

! Young leaders will undertake an audit of existing participation structures and provide recommendations to make these more accessible

Benefits and Risks There are a number of advantages to the recommendations provided within this report, notably to the structure for the SEND Participation Network and the quality of the participation that this enables, including:

! Children and young people are familiar and more comfortable with the environment, and subsequently more likely to express themselves

! Teachers or support workers know the children and young people personally and are able to adapt to their individual needs

! Communication systems are in place and are used effectively for different styles of communication

! Young leaders have an inspiring role supporting their friends and peers to communicate, and motivating others to get involved

! A greater number of children and young people can get involved as part of the SEND Participation network than that of a single structure

! Provides a structure that has the flexibility to work on timescales that suited children and young people

! Children and young people are already at these settings thus negating any requirements for additional transport

! It is more sustainable as it is based on settings rather than people, and provides opportunities for others to get involved when some move on

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! There is potential for spin-off activities which can have a positive effect within school and other settings

In addition to the advantages highlighted, there are a number of risks associated with this approach, including that schools and other settings may have different availability to engage in any additional participation activities. The recommended approach also requires central resources to support the SEND Participation Network, young leaders and the outreach programme. There may also be great time demands on young leaders, or expectations that put undue pressure on these, without allowing them sufficient time to develop the necessary skills and confidence. Participation activities may require a greater number of children and young people to be involved than currently engaged in order to achieve the aims for training, recruitment and co-production. The detail of how to progress the SEND Participation strategy and undertake the project recommendations is contained within the implementation plan. This is a working document that will need to be kept up-to-date with progress and changing circumstances. It contains details of the actions required to achieving the recommendations, and to ensure the necessary commitment from statutory authorities and their partners.

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Section 4: Implementation Plan Introduction This section of the report provides a breakdown of actions underpinning the project recommendations, including: establishing commitment and ongoing support from within the local authority and health services; the identification of strategic leads for health, education and social care; and provision of the resources required to achieving the recommendations. Background This implementation plan is based upon the ‘Hear by Right‘ framework6, which was developed in 2001 by the National Youth Agency. ‘Hear by Right’ is a standards framework which enables children, young people and adults to work together to develop an organisational participation action plan for improvement, and is structured around the following themes:

1. Shared Values: The organisation commits to the participation of children and young people with SEND and publicly communicates these shared values. These values are also used to underpin partnerships, commissioning relationships and to review performance.

2. Strategies: A plan is in place to help make the participation of children and young people with SEND in decision making a reality. The plan identifies resources, expertise, key leads and strategic allies. Children and young people with SEND have had an opportunity to help develop and review the plan.

3. Structures: Structures for involving children and young people with SEND in decision making are varied, both formal and informal, enabling participation on their own terms. They are integrated with professional

                                                                                                               6 Hear by Right, National Youth Agency 2008

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decision-making structures. Children and young people play an active role in reviewing structures for their involvement.

4. Systems: Policies and logistics are in place to ensure that participation activities are accessible and safe. Policies also cover complaints, incentives and rewards. Communication systems are in place to ensure that children and young people’s views are recorded, that they have the required information in order to make informed decisions, and that support is provided so that they are effectively able to express themselves.

5. Staff. Relevant job descriptions specify the duty to listen, respect and have regard for the views of children and young people with SEND, and how to support them to express themselves. Staff members are given information on their responsibilities for participation as part of their induction and this is assessed within supervisions and appraisals. Children and young people with SEND are involved in the recruitment and selection of staff.

6. Skills and Knowledge: There is a programme of capacity building for children, young people and professionals that enables them to take part in shared decision-making activities. Workshops are provided for parents about how to help children and young people with SEND develop decision-making skills in the home context.

7. Style of Leadership: Key managers and leaders act as champions for the active involvement of children and young people with SEND. Young leaders are supported to develop, and children and young people have opportunities to engage directly with senior management and leaders.

SEND Participation: Implementation Plan

1. Shared Values: The organisation commits to the participation of children and young people with SEND and publicly communicates these shared values. These values are also used to underpin partnerships, commissioning relationships and to review performance.

Actions Methods of Participation Lead Resources Due

1. Shared Values

1.1. Strategic leads for the local authority and health services are identified to support the implementation and ongoing development of the SEND Participation strategy

1.2. The project findings are presented to the Corporate Parenting Panel, Support and Aspiration Board and Health and Wellbeing Board, with actions, resources and timescales for the recommendations agreed

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

1.3. The Support and Aspiration Board accept responsibilities for the implementation and ongoing development of the strategy

1.4. Accessible versions of the SEND Participation strategy and charter are produced, which:

! sets out children and young people’s rights and how they can have their say

! provides examples of how parents, carers and professionals can support the implementation

! promotes greater awareness of SEND and the requirements for participation

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Actions Methods of Participation Lead Resources Due

1.5. Commissioning and Partnership arrangements include the participation of children and young people with SEND in the co-production of services; and individual care

1.6. The Young Commissioners programme and training is adapted to become more inclusive of children and young people with SEND; and the remit is extended to include SEND services

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2. Strategies: A plan is in place to help make the participation of children and young people with SEND in decision making a reality. The plan identifies resources, expertise, key leads and strategic allies. Children and young people with SEND have had an opportunity to help develop and review the plan.

Actions Methods of Participation Lead Resources Due

2. Strategies

2.1. The recommendations outlined in the implementation plan has leads for each action identified

2.2. Resources are identified to support the following actions:

! creation of accessible communication materials;

! identification of key issues for children and young people with SEND;

! development of engaging methods for consultations;

! effective provision of feedback to strategic leads

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

! planning and management of participation events

! participation resources to support parents, carers and professionals

! and the development of training programmes for children, young people, parents, carers and professionals

2.3. Links are established with partners, including: Leicester ‘Big Mouth’ forum, Darlington Association for Disability, EPIC and others; to support the implementation and ongoing development of the strategy; to establish opportunities for shared learning; and to broaden the SEND Participation network

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3. Structures: Structures for involving children and young people with SEND in decision making are varied, both formal and informal, enabling participation on their own terms. They are integrated with professional decision-making structures. Children and young people play an active role in reviewing structures for their involvement.

Actions Methods of Participation Lead Resources Due

3. Structures

3.1. Individual Decision-making: Children and young people with SEND are routinely able to:

! have a ‘One Page Profile’ for decision-making;

! have enough time to prepare for meetings;

! be given the opportunity to express their views;

! have meetings where they are comfortable;

! bring a friend, family member or trusted professional for support;

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

3.2. Outreach Programme: The children and young people involved in the project are supported to:

! develop accessible communication materials for the strategy, charter, ‘Local Offer’ and other resources

! lead consultation events and outreach discussions with their peers in schools and voluntary groups

! engage in participation with the local authority and health services on a needs-led basis

! audit existing participation structures providing recommendations for inclusive practice

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Actions Methods of Participation Lead Resources Due

3.3. Peer Workers: A number of young people with SEND are employed as Peer Workers to support the planning and delivery of consultation workshops, and supporting others to engage with participation

3.4. SEND Participation Network: Children and young people within the network are consulted on issues that that affect them and have the opportunity to highlight these matters to strategic leads at network events

3.5. Mainstream Participation: Following the Outreach Programme audit, mainstream participation programmes are more inclusive of children and young people with SEND

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4. Systems: Policies and logistics are in place to ensure that participation activities are accessible and safe. Policies also cover complaints, incentives and rewards. Communication systems are in place to ensure that children and young people’s views are recorded, that they have the required information in order to make informed decisions, and that support is provided so that they are effectively able to express themselves.

Actions Methods of Participation Lead Resources Due

4. Systems

4.1. Information: Children and young people help to co-produce an accessible ‘Local Offer’

4.2. Information: Accessible guides to Education, Health and Care plans, including information on mediation and appeal are developed with children and young people

4.3. Communication: A range of ‘One Page Profile’ templates are developed with children and young people, and made readily available

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

4.4. Communication Support: Children and young people can bring a friend, other family member or professional to meetings about their support, education or care, or to provide support during participation activities

4.5. Personal Care Assistants and Interpreters are made available when children or young person need support to enable them to be involved in participation activities

4.6. Qualifications are available to children and young people who partake in the Outreach Programme or other SEND Participation activities to recognise their skills and accredit their achievements and developing confidence

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Actions Methods of Participation Lead Resources Due

4.7. Certificates of participation are given to children and young people who engage in participation activities

4.8. Celebration Events: The Outreach Programme have resources available for an annual SEND Participation celebration event

4.9. News and Updates: Children and young people’s activities are celebrated and shared in the local authority and health service communications, and external outlets for news and updates

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5. Staff. Relevant job descriptions specific the duty to listen, respect and have regard for the views of children and young people with SEND, and how to support them to express themselves. Staff members are given information on their responsibilities for participation as part of their induction and this is assessed within supervisions and appraisals. Children and young people with SEND are involved in the recruitment and selection of staff.

Actions Methods of Participation Lead Resources Due

5. Staff

5.1. The job descriptions and annual objectives for roles which have responsibilities for SEND services are reviewed to include specific duties for the ‘effective and meaningful’ participation of children and young people with SEND

5.2. All new posts that involve listening to the views of children and young people, or with responsibilities relating to this area, include children and young people with SEND in the recruitment process

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

5.3. A training programme is developed to support children and young people with SEND to develop the skills to confidently participate in staff recruitment, including job descriptions, advertising, recruitment panels, supervision and appraisals

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6. Skills and Knowledge: There is a programme of capacity building for children, young people and professionals that enables them to take part in shared decision-making activities. Workshops are provided for parents about how to help children and young people with SEND develop decision-making skills in the home context.

Actions Methods of Participation Lead Resources Due

6. Skills and Knowledge

6.1. Professionals supporting children and young people with SEND receive training that covers:

! responsibilities for SEND Participation;

! using ‘One Page Profiles’ in decision-making;

! making meetings more accessible;

! helping children and young people to prepare for meetings;

! bringing a friend or family member for support

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

6.2. Parent-led workshops are developed in partnership with children and young people to support participation in individual decision-making and wider participation, including:

! how to support decision-making;

! managing risk-taking;

! children and young people’s rights

6.3. A resource is identified to collate and share materials and examples of good practice relating to SEND Participation, consultation methods, accessible information and shared decision-making tools

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7. Style of Leadership: Key managers and leaders act as champions for the active involvement of children and young people with SEND. Young leaders are supported to develop, and children and young people have opportunities to engage directly with senior management and leaders.

Actions Methods of Participation Lead Resources Due

7. Style of Leadership

7.1. Leadership training is provided to children and young people involved in the Outreach Programme

7.2. ‘Participation Champions’ from education, health, social care, leisure and the VCS agree to:

! promote the rights of children and young people with SEND in individual decision-making and wider participation;

! oversee implementation and ongoing development of the strategy in their

(Information; Consultation; Participation; Co-production)

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Actions Methods of Participation Lead Resources Due

areas of responsibility

! actively communicate the views of children and young people with SEND to their colleagues;

! ensure their colleagues are aware of the strategy and areas of training;

! report back to children and young people changes that happen as a result of their participation

7.3. Strategic leads, ‘Participation Champions’ and senior managers in the local authority and health services engage with children and young people to develop trust, confidence and understanding in working effectively together

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Actions Methods of Participation Lead Resources Due

7.4. Children and young people from the Outreach Programme engage with the Corporate Parenting Panel, Support and Aspiration Board and Health and Wellbeing Board to provide feedback from the SEND Participation network:

! in person on specific agenda items

! through multimedia presentations

! by means of strategic leads or ‘Participation Champions’

Appendices Appendix 1: ‘SEND Participation Infographic’

Acknowledgement: Kaizen Partnership

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Appendix 2: ‘Children and Families Act; Early Support Principles’

Acknowledgement: Anna Gill

Children and Families Act 2014: ‘Local Authorities must have regard to…’ Early Support Principles

‘…the views, wishes and feelings of the child and his or her parent, or the young person.’

1. Valued Uniqueness: The uniqueness of children, young people and families is valued and provided for.

2. Ordinary Lives: Wherever possible, children, young people and their families are able to live ‘ordinary lives’.

‘…the importance of the child and his or her parent, or the young person, participating as fully as possible in decisions relating to the exercise of the function concerned.’

3. Planning Partnerships: An integrated assessment, planning and review process is provided in partnership with children, young people and families.

4. Participation: Children, young people and families are involved in shaping, developing and evaluating the services they use.

‘…the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions.’

5. Informed Choices: Children, young people and families are able to make informed choices.

6. Workforce Development: Children, young people and families can be confident the people working with them have appropriate training, skills, knowledge and experience.

‘…the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.’

7. Learning & Development: Children and young people’s learning and development is monitored and promoted.

8. Key Working: Service delivery is holistic, co-ordinated, seamless and supported by key working.

9. Working Together: Multi-agency working practices and systems are integrated.

10. Birth to Adulthood: Continuity of care is maintained through different stages of a child’s life and through preparation for adulthood.

 

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Appendix 3: ‘Best Practice on Consultation and Strategic Involvement with Young People with Special Needs’ While there was information available about the consultation and involvement of young people with special needs, there was not much difference in the methods of consultation across different types of special needs. The majority of information found relating to the consultation and involvement of the young people mentioned general guidelines for the involvement rather than formulated plans. Below are some of the most commonly mentioned tips for better communication:

! Allowing them plenty of time to formulate their thoughts and respond

! Meeting them beforehand makes the situation more comfortable (ice breaker) and gives a glimpse into their individual communication style

! If they know in advance what the topics are there is more time for them to prepare their opinions

! Allowing them to show or present their views through pictures or creativity can lessen the burden of verbal communication; pictures are good!

! Make it fun and entertaining The following are methods that were specifically mentioned:

! Augmentative and alternative communication, for people with verbal communication problems.

! Art, creativity and expression (like storytelling) were sometimes used to get young people involved

! Alternative languages like ‘Makaton’ or sign language Augmentative communication systems included ‘Talking Mats’, communication boards, and symbol questionnaires. While there was not much mentioned about difference in age groups or needs, it did seem as though talking mats, symbol questionnaires and similar creative ways for communication worked best with younger children and those requiring more specific care. Questionnaires seemed favored by the young to middle age group.

 

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Two projects aimed specifically towards the communication with and involvement of young people with special needs, ‘Ask Us’ (interactive CD) and ‘Two Way Street’ (training video), showed that multi-media tools are a useful way to consult with disabled children about a range of issues, including government policy.

Resources for Engagement and Consultation with Children and Young People with Special Educational Needs and Disabilities Children with vocal special needs (have difficulty talking or communicating) find success in communicating through augmentative and alternative Communication, which is basically any strategy to help participation and communication. A very common example of this used for communicating with special needs young people is the interaction through images or other devices to help them talk, like matching moods/feelings to pictures or selecting different images to communicate needs and opinions. These communication boards can be physical or digital. Recently, young people involved in ‘1 Voice’ (national support network for children and young people who use communication aids) wrote and produced a music DVD called ‘Listen to Me’. The song and video told viewers about them, and gave top tips on how to talk with young people who use communication aids. The DVD has been really successful and has been distributed all over the world. ‘Making Ourselves Heard’ is a book based on a series of eight seminars with local authorities. This book sets out the current policy context for disabled children and young people's participation, outlines the barriers and challenges to effective participation and highlights what is working well. It promotes the active participation of disabled children and young people in all decisions and issues that affect them. (Making Ourselves Heard) ‘Talking Mats’ communication symbols tool is based on extensive research and designed by Speech and Language Therapists. It uses unique, specially designed picture communication symbols that are attractive to all ages and communication abilities and is used by clinical practitioners, carers and support workers. It uses three sets of picture communication symbols – topics, options and a visual scale – and a space on which to display them. This can either be a physical, textured mat, or a digital space, for example a tablet, smart board or computer screen for which we have created one of the best apps for communication disability. (Talking Mats.)

 

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Symbol questionnaires are beneficial to children who experience difficulties both with verbal communication and with reading conventional text. Sometimes these children find it easier to communicate using symbols. Symbols persist longer than the spoken word and can therefore be viewed and decoded at the child’s own pace. Symbols can be used combination with images (such as photographs and pictures) to express more complex concepts than it is possible to covey using arrays of objects and photographs alone. (University of Bath Research; Symbol Questionnaire) The Children’s Society’s ‘Disability Toolkit’ was created to give you a wealth of tools to use with young people, and keep you up-to-date with research, policy and training opportunities. ‘Disability Toolkit’ is an online database to help you quickly find information and ideas to support your work with disabled children and young people. It has practitioner recommended resources as well as a practice section for information on enabling young people’s participation that have been tested by others. (Disability Toolkit Overview; Practices) ‘I’ll Go First’ is a planning and review toolkit for disabled children and young people. It provides a fun and easy way for them to express their likes/dislikes and preferences about their care and education. It is a CD-ROM for using computer technology to enable disabled children and young people to make their views known in a fun and creative way. Contains new storyboards and the option for disabled children and young people to record their views online. (I’ll Go First) ‘Ask Us’ is a CD-Rom resulting from a multi-media consultation through which over 200 disabled children and young people aged 4 to 24 from across England addressed issues such as access to leisure, participation and social exclusion, communication and services. (Ask Us) ‘Two-Way Street’ is a training video and practice guide for involving disabled children in assessment, planning and review processes. Written with help from disabled young people, it is full of practical ideas for making initial contact with children, working directly, observing children respectfully and representing children's views. Children in the video communicate through behaviour, sign, symbols, body language, eye pointing, facial expression, gesture, play, use of art, objects of reference, speech, vocalisation and physical movement. (Two Way Street)

 

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‘Personal Communication Passports’ are a practical and person-centered way of supporting children, young people and adults who do not use speech to communicate. (Personal Communication Passports) Examples of Excellence and Best Practice (UK & Global) The ‘Children’s Society’ is involved in many projects that relate to the involvement of young people with special needs. Their projects include the Disability Toolkit, I’ll Go First, Ask Us, and Askability. (The Children’s Society) ‘Askability’ is the only symbol-supported website of its kind in the world, allowing disabled young people to explore online and take part safely in social networking. (Askability) The ‘Disability Toolkit’ is a website established by the Children’s Society to support professionals in involving disabled children and young people in participation and decision-making. The website has a database of resources and practice examples. (The Disability Toolkit) ‘Participation Works Partnership’ has a number of tools to support disabled children and young people’s participation are available. These include mechanisms for making complaint procedures accessible to disabled children, practical toolkits such as communication passports, practice guidance, training materials and multi-media approaches. (Participation Works Partnership) The ‘Disabled Children's Champion’ makes sure that disabled children and young people across the city are included, involved and take part in activities in the city and their voice is heard. (Disabled Children's Champion) ‘Every Disabled Child Matters’ (EDCM) is the national campaign fighting for rights and justice for disabled children. It is a consortium campaign run by four national organisations working with disabled children and their families - Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium. Between them, the campaign partners represent over 800,000 disabled children and young people in the UK. They also organized ‘If I Could Change One Thing…’ which asked children, young people and their parents ‘If you were Prime Minister for the day, and could change one thing, what would it be?' and printed their answers in booklets. (Every Disabled Child Matters)

 

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Appendix 4: ‘SEND Participation Network’

 

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Shortland Palmer Consultancy